Medicine › Public Health, Environmental and Occupational Health

Palliative Care and End-of-Life Issues

Works Count: 135116

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Description

This cluster of papers focuses on the integration of palliative care into end-of-life treatment, including advance care planning, family perspectives, communication strategies, prognostic disclosure, ICU care, ethical considerations, and health care costs. It explores the impact of early palliative care, patient and caregiver outcomes, and the quality of dying and death.

Keywords

Palliative Care; End-of-Life; Advance Care Planning; Family Perspectives; Quality of Dying; Communication Strategies; Prognostic Disclosure; ICU Care; Ethical Considerations; Health Care Costs

The Edmonton Symptom Assessment System (ESAS): A Simple Method for the Assessment of Palliative Care Patients

1991-06-01

Éduardo Bruera , Norma Kuehn , Melvin J. Miller +2 more

We describe a simple method for the assessment of symptoms twice a day in patients admitted to a palliative care unit. Eight visual analog scales (VAS) 0-100 mm are completed … We describe a simple method for the assessment of symptoms twice a day in patients admitted to a palliative care unit. Eight visual analog scales (VAS) 0-100 mm are completed either by the patient alone, by the patient with nurse's assistance, or by the nurses or relatives at 10:00 and 18:00 hours, in order to indicate the levels of pain, activity, nausea, depression, anxiety, drowsiness, appetite, and sensation of well-being. The information is then transferred to a graph that contains the assessments of up to 21 days on each page. The sum of the scores for all symptoms is defined as the symptom distress score. The Edmonton Symptom Assessment System (ESAS) was carried out for 101 consecutive patients for the length of their admission to our unit. Of these, 84% were able to make their own assessment sometime during their admission. However, before death 83% of assessments were completed by a nurse or relative. Mean symptom distress score was 410 +/- 95 during day 1 of the admission, versus 362 +/- 83 during day 5 (p less than 0.01). Mean symptom distress scores throughout the hospitalization were 359 +/- 105, 374 +/- 93, 359 +/- 91 and 406 +/- 81 when the ESAS was completed by the patient alone, patient with nurse's assistance (p = N.S.), nurse alone (p = N.S.), or relative (p less than 0.01) respectively. We conclude that this is a simple and useful method for the regular assessment of symptom distress in the palliative care setting.

Measuring the quality of life of cancer patients

1981-01-01

Walter O. Spitzer , Annette J. Dobson , Jane Hall +5 more

Patient preferences for oral versus intravenous palliative chemotherapy.

1997-01-01

Geoffrey Liu , E. Franssen , Margaret I. Fitch +1 more

PURPOSE To assess patient preference for oral versus intravenous (i.v.) palliative chemotherapy (CT). A strong preference would be an important quality-of-life issue. PATIENTS AND METHODS A structured interviewer-administered scenario-based questionnaire … PURPOSE To assess patient preference for oral versus intravenous (i.v.) palliative chemotherapy (CT). A strong preference would be an important quality-of-life issue. PATIENTS AND METHODS A structured interviewer-administered scenario-based questionnaire evaluated incurable cancer patients who would be likely to receive palliative CT in the future. Using probability trade-offs, the preference for route of administration was evaluated against diminishing treatment response. RESULTS Of 103 assessable patients, 92 preferred oral CT, 10 preferred i.v. CT, and one had no preference. Patient preferences were not associated with age, sex, site of primary cancer, or previous CT experiences. Major reasons for preferring oral CT were convenience, problems with i.v. access or needles, and a better CT-taking environment (outside of the clinic). Regardless of initial preference, 70% of patients were not willing to accept a lower response rate and 74% were not willing to accept a shorter duration of response to retain their initial preference. Although 99% of patients had a preference, 39% wanted the specific treatment decision made primarily by their physicians, 38% primarily by themselves, and 22% shared equally. CONCLUSION Patients with incurable cancer have a clear preference for oral CT, but are generally not willing to sacrifice efficacy for their preference. Almost 40% of patients did not want to make final treatment decisions themselves.

Extent and determinants of error in doctors' prognoses in terminally ill patients: prospective cohort study Commentary: Why do doctors overestimate? Commentary: Prognoses should be based on proved indices not intuition

2000-02-19

Nicholas A. Christakis

<h3>Abstract</h3> <b>Objective:</b> To describe doctors9 prognostic accuracy in terminally ill patients and to evaluate the determinants of that accuracy. <b>Design:</b> Prospective cohort study <b>Setting:</b> Five outpatient hospice programmes in Chicago … <h3>Abstract</h3> <b>Objective:</b> To describe doctors9 prognostic accuracy in terminally ill patients and to evaluate the determinants of that accuracy. <b>Design:</b> Prospective cohort study <b>Setting:</b> Five outpatient hospice programmes in Chicago <b>Participants:</b> 343 doctors provided survival estimates for 468 terminally ill patients at the time of hospice referral <b>Main outcome measures:</b> Patients9 estimated and actual survival. <b>Results:</b> Median survival was 24 days. Only 20% (92/468) of predictions were accurate (within 33% of actual survival); 63% (295/468) were overoptimistic and 17% (81/468) were overpessimistic. Overall, doctors overestimated survival by a factor of 5.3. Few patient or doctor characteristics were associated with prognostic accuracy. Male patients were 58% less likely to have overpessimistic predictions. Non-oncology medical specialists were 326% more likely than general internists to make overpessimistic predictions. Doctors in the upper quartile of practice experience were the most accurate. As duration of doctor-patient relationship increased and time since last contact decreased, prognostic accuracy decreased. <b>Conclusion:</b> Doctors are inaccurate in their prognoses for terminally ill patients and the error is systematically optimistic. The inaccuracy is, in general, not restricted to certain kinds of doctors or patients. These phenomena may be adversely affecting the quality of care given to patients near the end of life

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Factors influencing death at home in terminally ill patients with cancer: systematic review

2006-02-08

Bárbara Gomes , Irene J Higginson

To determine the relative influence of different factors on place of death in patients with cancer.Four electronic databases-Medline (1966-2004), PsycINFO (1972-2004), CINAHL (1982-2004), and ASSIA (1987-2004); previous contacts with key … To determine the relative influence of different factors on place of death in patients with cancer.Four electronic databases-Medline (1966-2004), PsycINFO (1972-2004), CINAHL (1982-2004), and ASSIA (1987-2004); previous contacts with key experts; hand search of six relevant journals.We generated a conceptual model, against which studies were analysed. Included studies had original data on risk factors for place of death among patients, > 80% of whom had cancer. Strength of evidence was assigned according to the quantity and quality of studies and consistency of findings. Odds ratios for home death were plotted for factors with high strength evidence.58 studies were included, with over 1.5 million patients from 13 countries. There was high strength evidence for the effect of 17 factors on place of death, of which six were strongly associated with home death: patients' low functional status (odds ratios range 2.29-11.1), their preferences (2.19-8.38), home care (1.37-5.1) and its intensity (1.06-8.65), living with relatives (1.78-7.85), and extended family support (2.28-5.47). The risk factors covered all groups of the model: related to illness, the individual, and the environment (healthcare input and social support), the latter found to be the most important.The ne of factors that influence where patients with cancer die is complicated. Future policies and clinical practice should focus on ways of empowering families and public education, as well as intensifying home care, risk assessment, and training practitioners in end of life care.

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Factors Considered Important at the End of Life by Patients, Family, Physicians, and Other Care Providers

2000-11-15

Karen E. Steinhauser

ContextA clear understanding of what patients, families, and health care practitioners view as important at the end of life is integral to the success of improving care of dying patients. … ContextA clear understanding of what patients, families, and health care practitioners view as important at the end of life is integral to the success of improving care of dying patients. Empirical evidence defining such factors, however, is lacking.ObjectiveTo determine the factors considered important at the end of life by patients, their families, physicians, and other care providers.Design and SettingCross-sectional, stratified random national survey conducted in March-August 1999.ParticipantsSeriously ill patients (n = 340), recently bereaved family (n = 332), physicians (n = 361), and other care providers (nurses, social workers, chaplains, and hospice volunteers; n = 429).Main Outcome MeasuresImportance of 44 attributes of quality at the end of life (5-point scale) and rankings of 9 major attributes, compared in the 4 groups.ResultsTwenty-six items consistently were rated as being important (>70% responding that item is important) across all 4 groups, including pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences, and being treated as a "whole person." Eight items received strong importance ratings from patients but less from physicians (P<.001), including being mentally aware, having funeral arrangements planned, not being a burden, helping others, and coming to peace with God. Ten items had broad variation within as well as among the 4 groups, including decisions about life-sustaining treatments, dying at home, and talking about the meaning of death. Participants ranked freedom from pain most important and dying at home least important among 9 major attributes.ConclusionsAlthough pain and symptom management, communication with one's physician, preparation for death, and the opportunity to achieve a sense of completion are important to most, other factors important to quality at the end of life differ by role and by individual. Efforts to evaluate and improve patients' and families' experiences at the end of life must account for diverse perceptions of quality.

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Use of intensive care at the end of life in the United States: An epidemiologic study*

2004-03-01

Derek C. Angus , Amber E. Barnato , Walter T. Linde‐Zwirble +4 more

Objective Despite concern over the appropriateness and quality of care provided in an intensive care unit (ICU) at the end of life, the number of Americans who receive ICU care … Objective Despite concern over the appropriateness and quality of care provided in an intensive care unit (ICU) at the end of life, the number of Americans who receive ICU care at the end of life is unknown. We sought to describe the use of ICU care at the end of life in the United States using hospital discharge data from 1999 for six states and the National Death Index. Design Retrospective analysis of administrative data to calculate age-specific rates of hospitalization with and without ICU use at the end of life, to generate national estimates of end-of-life hospital and ICU use, and to characterize age-specific case mix of ICU decedents. Setting All nonfederal hospitals in the states of Florida, Massachusetts, New Jersey, New York, Virginia, and Washington. Patients All inpatients in nonfederal hospitals in the six states in 1999. Intervention None. Measurements and Main Results We found that there were 552,157 deaths in the six states in 1999, of which 38.3% occurred in hospital and 22.4% occurred after ICU admission. Using these data to project nationwide estimates, 540,000 people die after ICU admission each year. The age-specific rate of ICU use at the end of life was highest for infants (43%), ranged from 18% to 26% among older children and adults, and fell to 14% for those >85 yrs. Average length of stay and costs were 12.9 days and $24,541 for terminal ICU hospitalizations and 8.9 days and $8,548 for non-ICU terminal hospitalizations. Conclusions One in five Americans die using ICU services. The doubling of persons over the age of 65 yrs by 2030 will require a system-wide expansion in ICU care for dying patients unless the healthcare system pursues rationing, more effective advanced care planning, and augmented capacity to care for dying patients in other settings.

Health-Related Quality-of-Life Assessments and Patient-Physician Communication

2002-12-18

Symone Detmar , Martin J. Muller , Jan H. Schornagel +2 more

There has been increasing interest in the use of health-related quality-of-life (HRQL) assessments in daily clinical practice, yet few empirical studies have been conducted to evaluate the usefulness of such … There has been increasing interest in the use of health-related quality-of-life (HRQL) assessments in daily clinical practice, yet few empirical studies have been conducted to evaluate the usefulness of such assessments.To evaluate the efficacy of standardized HRQL assessments in facilitating patient-physician communication and increasing physicians' awareness of their patients' HRQL-related problems.Prospective, randomized crossover trial.Outpatient clinic of a cancer hospital in the Netherlands.Ten physicians and 214 patients (76% women; mean age, 57 years) undergoing palliative chemotherapy who were invited to participate between June 1996 and June 1998.At 3 successive outpatient visits, patients completed an HRQL questionnaire (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30). The responses were computer scored and transformed into a graphic summary. Physicians and patients received a copy of the summary before the consultation.Audiotapes of the consultations were content analyzed to evaluate patient-physician communication. Physicians' awareness of their patients' health problems was assessed by comparing physicians' and patients' ratings on the Dartmouth Primary Care Cooperative Information Functional Health Assessment (COOP) and the World Organisation Project of National Colleges and Academics (WONCA) charts.The HRQL-related issues were discussed significantly more frequently in the intervention than in the control group (mean [SD] communication composite scores: 4.5 [2.3] vs 3.7 [1.9], respectively (P =.01). Physicians in the intervention group identified a greater percentage of patients with moderate-to-severe health problems in several HRQL domains than did those in the control group. All physicians and 87% of the patients believed that the intervention facilitated communication and expressed interest in its continued use.Incorporating standardized HRQL assessments in daily clinical oncology practice facilitates the discussion of HRQL issues and can heighten physicians' awareness of their patients' HRQL.

Quality End-of-Life Care

1999-01-13

Peter Singer , Douglas K. Martin , Merrijoy Kelner

Quality end-of-life care is increasingly recognized as an ethical obligation of health care providers, both clinicians and organizations. However, this concept has not been examined from the perspective of patients.To … Quality end-of-life care is increasingly recognized as an ethical obligation of health care providers, both clinicians and organizations. However, this concept has not been examined from the perspective of patients.To identify and describe elements of quality end-of-life care from the patient's perspective.Qualitative study using in-depth, open-ended, face-to-face interviews and content analysis.Toronto, Ontario.A total of 126 participants from 3 patient groups: dialysis patients (n = 48), people with human immunodeficiency virus infection (n = 40), and residents of a long-term care facility (n = 38).Participants' views on end-of-life issues.Participants identified 5 domains of quality end-of-life care: receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones.These domains, which characterize patients' perspectives on end-of-life care, can serve as focal points for improving the quality of end-of-life care.

Understanding the Treatment Preferences of Seriously Ill Patients

2002-04-04

Terri R. Fried , Elizabeth H. Bradley , Virginia Towle +1 more

The questions patients are asked about their preferences with regard to life-sustaining treatment usually focus on specific interventions, but the outcomes of treatment and their likelihood affect patients' preferences. The questions patients are asked about their preferences with regard to life-sustaining treatment usually focus on specific interventions, but the outcomes of treatment and their likelihood affect patients' preferences.

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Generalist plus Specialist Palliative Care — Creating a More Sustainable Model

2013-03-06

Timothy E. Quill , Amy P. Abernethy

Countermeasuresanyone injured by research; and provisions must be made to engage communities throughout the course of research.Routine preexposure prophylaxis in military personnel has resulted in observational studies of AVA in … Countermeasuresanyone injured by research; and provisions must be made to engage communities throughout the course of research.Routine preexposure prophylaxis in military personnel has resulted in observational studies of AVA in young adults, but additional data from adult populations -from dose-sparing studies, for example -are needed before pediatric testing can be ethically considered.With additional safety data, the level of risk to young adults could be inferred with increased statistical confidence.Such an inference, in turn, would influence a possible minimal-risk design of a series of age-deescalating safety and immunogenicity studies.Sound science must always respect our ethical obligations to protect children from unnecessary risks.Medical countermeasure research warrants an ongoing national conversation to ensure an unwavering commitment to safeguard all children both from unacceptable risks in research and through research promoting their health and well-being.

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Post-Hospital Syndrome — An Acquired, Transient Condition of Generalized Risk

2013-01-09

Harlan M. Krumholz

Interview with Dr. Harlan Krumholz on a condition of generalized risk after patients are discharged from the hospital. (17:28)Download Patients who were recently hospitalized experience a period of generalized risk … Interview with Dr. Harlan Krumholz on a condition of generalized risk after patients are discharged from the hospital. (17:28)Download Patients who were recently hospitalized experience a period of generalized risk for myriad adverse health events. Their condition may be characterized as a post-hospital syndrome, an acquired condition of vulnerability not necessarily linked to the original illness.

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Effects of a Palliative Care Intervention on Clinical Outcomes in Patients With Advanced Cancer

2009-08-18

Marie Bakitas , Kathleen Doyle Lyons , Mark T. Hegel +7 more

There are few randomized controlled trials on the effectiveness of palliative care interventions to improve the care of patients with advanced cancer.To determine the effect of a nursing-led intervention on … There are few randomized controlled trials on the effectiveness of palliative care interventions to improve the care of patients with advanced cancer.To determine the effect of a nursing-led intervention on quality of life, symptom intensity, mood, and resource use in patients with advanced cancer.Randomized controlled trial conducted from November 2003 through May 2008 of 322 patients with advanced cancer in a rural, National Cancer Institute-designated comprehensive cancer center in New Hampshire and affiliated outreach clinics and a VA medical center in Vermont.A multicomponent, psychoeducational intervention (Project ENABLE [Educate, Nurture, Advise, Before Life Ends]) conducted by advanced practice nurses consisting of 4 weekly educational sessions and monthly follow-up sessions until death or study completion (n = 161) vs usual care (n = 161).Quality of life was measured by the Functional Assessment of Chronic Illness Therapy for Palliative Care (score range, 0-184). Symptom intensity was measured by the Edmonton Symptom Assessment Scale (score range, 0-900). Mood was measured by the Center for Epidemiological Studies Depression Scale (range, 0-60). These measures were assessed at baseline, 1 month, and every 3 months until death or study completion. Intensity of service was measured as the number of days in the hospital and in the intensive care unit (ICU) and the number of emergency department visits recorded in the electronic medical record.A total of 322 participants with cancer of the gastrointestinal tract (41%; 67 in the usual care group vs 66 in the intervention group), lung (36%; 58 vs 59), genitourinary tract (12%; 20 vs 19), and breast (10%; 16 vs 17) were randomized. The estimated treatment effects (intervention minus usual care) for all participants were a mean (SE) of 4.6 (2) for quality of life (P = .02), -27.8 (15) for symptom intensity (P = .06), and -1.8 (0.81) for depressed mood (P = .02). The estimated treatment effects in participants who died during the study were a mean (SE) of 8.6 (3.6) for quality of life (P = .02), -24.2 (20.5) for symptom intensity (P = .24), and -2.7 (1.2) for depressed mood (P = .03). Intensity of service did not differ between the 2 groups.Compared with participants receiving usual oncology care, those receiving a nurse-led, palliative care-focused intervention addressing physical, psychosocial, and care coordination provided concurrently with oncology care had higher scores for quality of life and mood, but did not have improvements in symptom intensity scores or reduced days in the hospital or ICU or emergency department visits.clinicaltrials.gov Identifier: NCT00253383.

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Communication About Serious Illness Care Goals

2014-10-20

Rachelle Bernacki , Susan D. Block

An understanding of patients' care goals in the context of a serious illness is an essential element of high-quality care, allowing clinicians to align the care provided with what is … An understanding of patients' care goals in the context of a serious illness is an essential element of high-quality care, allowing clinicians to align the care provided with what is most important to the patient. Early discussions about goals of care are associated with better quality of life, reduced use of nonbeneficial medical care near death, enhanced goal-consistent care, positive family outcomes, and reduced costs. Existing evidence does not support the commonly held belief that communication about end-of-life issues increases patient distress. However, conversations about care goals are often conducted by physicians who do not know the patient, do not routinely address patients' nonmedical goals, and often fail to provide patients with sufficient information about prognosis to allow appropriate decisions; in addition, they tend to occur so late in the patient's illness that their impact on care processes is reduced. This article (1) reviews the evidence and describes best practices in conversations about serious illness care goals and (2) offers practical advice for clinicians and health care systems about developing a systematic approach to quality and timing of such communication to assure that each patient has a personalized serious illness care plan. Best practices in discussing goals of care include the following: sharing prognostic information, eliciting decision-making preferences, understanding fears and goals, exploring views on trade-offs and impaired function, and wishes for family involvement. Several interventions hold promise in systematizing conversations with patients about serious illness care goals: better education of physicians; systems to identify and trigger early discussions for appropriate patients; patient and family education; structured formats to guide discussions; dedicated, structured sections in the electronic health record for recording information; and continuous measurement. We conclude that communication about serious illness care goals is an intervention that should be systematically integrated into our clinical care structures and processes.

Trends in the Aggressiveness of Cancer Care Near the End of Life

2004-01-13

Craig C. Earle , Bridget A. Neville , Mary Beth Landrum +3 more

To characterize the aggressiveness of end-of-life cancer treatment for older adults on Medicare, and its relationship to the availability of healthcare resources.We analyzed Medicare claims of 28,777 patients 65 years … To characterize the aggressiveness of end-of-life cancer treatment for older adults on Medicare, and its relationship to the availability of healthcare resources.We analyzed Medicare claims of 28,777 patients 65 years and older who died within 1 year of a diagnosis of lung, breast, colorectal, or other gastrointestinal cancer between 1993 and 1996 while living in one of 11 US regions monitored by the Surveillance, Epidemiology, and End Results Program.Rates of treatment with chemotherapy increased from 27.9% in 1993 to 29.5% in 1996 (P =.02). Among those who received chemotherapy, 15.7% were still receiving treatment within 2 weeks of death, increasing from 13.8% in 1993 to 18.5% in 1996 (P <.001). From 1993 to 1996, increasing proportions of patients had more than one emergency department visit (7.2% v 9.2%; P <.001), hospitalization (7.8% v 9.1%; P =.008), or were admitted to an intensive care unit (7.1% v 9.4%; P =.009) in the last month of life. Although fewer patients died in acute-care hospitals (32.9% v 29.5%; P <.001) and more used hospice services (28.3% v 38.8%; P <.001), an increasing proportion of patients who received hospice care initiated this service only within the last 3 days of life (14.3% v 17.0%; P =.004). Black patients were more likely than white patients to experience aggressive intervention in nonteaching hospitals but not in teaching hospitals. Greater local availability of hospices was associated with less aggressive treatment near death on multivariate analysis.The treatment of cancer patients near death is becoming increasingly aggressive over time.

Ethnicity and Attitudes Toward Patient Autonomy

1995-09-13

Leslie Blackhall

To study differences in the attitudes of elderly subjects from different ethnic groups toward disclosure of the diagnosis and prognosis of a terminal illness and toward end-of-life decision making.Survey.Thirty-one senior … To study differences in the attitudes of elderly subjects from different ethnic groups toward disclosure of the diagnosis and prognosis of a terminal illness and toward end-of-life decision making.Survey.Thirty-one senior citizen centers within Los Angeles County, California.A stratified quota sample of 200 subjects aged 65 years and older self-identified as being from each of four ethnic groups: European American, African American, Korean American, or Mexican American (N = 800).Korean Americans (47%) and Mexican Americans (65%) were significantly less likely than European Americans (87%) and African Americans (88%) to believe that a patient should be told the diagnosis of metastatic cancer. Korean Americans (35%) and Mexican Americans (48%) were less likely than African Americans (63%) and European Americans (69%) to believe that a patient should be told of a terminal prognosis and less likely to believe that the patient should make decisions about the use of life-supporting technology (28% and 41% vs 60% and 65%). Instead, Korean Americans and Mexican Americans tended to believe that the family should make decisions about the use of life support. On stepwise multiple logistic regression, ethnicity was the primary factor related to attitudes toward truth telling and patient decision making.Korean-American and Mexican-American subjects were more likely to hold a family-centered model of medical decision making rather than the patient autonomy model favored by most of the African-American and European-American subjects. This finding suggests that physicians should ask their patients if they wish to receive information and make decisions or if they prefer that their families handle such matters.

Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial

2014-02-18

Camilla Zimmermann , Nadia Swami , Monika K. Krzyzanowska +7 more

Early Versus Delayed Initiation of Concurrent Palliative Oncology Care: Patient Outcomes in the ENABLE III Randomized Controlled Trial

2015-03-24

Marie Bakitas , Tor D. Tosteson , Zhigang Li +7 more

Purpose Randomized controlled trials have supported integrated oncology and palliative care (PC); however, optimal timing has not been evaluated. We investigated the effect of early versus delayed PC on quality … Purpose Randomized controlled trials have supported integrated oncology and palliative care (PC); however, optimal timing has not been evaluated. We investigated the effect of early versus delayed PC on quality of life (QOL), symptom impact, mood, 1-year survival, and resource use. Patients and Methods Between October 2010 and March 2013, 207 patients with advanced cancer at a National Cancer Institute cancer center, a Veterans Affairs Medical Center, and community outreach clinics were randomly assigned to receive an in-person PC consultation, structured PC telehealth nurse coaching sessions (once per week for six sessions), and monthly follow-up either early after enrollment or 3 months later. Outcomes were QOL, symptom impact, mood, 1-year survival, and resource use (hospital/intensive care unit days, emergency room visits, chemotherapy in last 14 days, and death location). Results Overall patient-reported outcomes were not statistically significant after enrollment (QOL, P = .34; symptom impact, P = .09; mood, P = .33) or before death (QOL, P = .73; symptom impact, P = .30; mood, P = .82). Kaplan-Meier 1-year survival rates were 63% in the early group and 48% in the delayed group (difference, 15%; P = .038). Relative rates of early to delayed decedents' resource use were similar for hospital days (0.73; 95% CI, 0.41 to 1.27; P = .26), intensive care unit days (0.68; 95% CI, 0.23 to 2.02; P = .49), emergency room visits (0.73; 95% CI, 0.45 to 1.19; P = .21), chemotherapy in last 14 days (1.57; 95% CI, 0.37 to 6.7; P = .27), and home death (27 [54%] v 28 [47%]; P = .60). Conclusion Early-entry participants' patient-reported outcomes and resource use were not statistically different; however, their survival 1-year after enrollment was improved compared with those who began 3 months later. Understanding the complex mechanisms whereby PC may improve survival remains an important research priority.

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Depression, Hopelessness, and Desire for Hastened Death in Terminally Ill Patients With Cancer

2000-12-13

William Breitbart

Understanding why some terminally ill patients desire a hastened death has become an important issue in palliative care and the debate regarding legalization of assisted suicide.To assess the prevalence of … Understanding why some terminally ill patients desire a hastened death has become an important issue in palliative care and the debate regarding legalization of assisted suicide.To assess the prevalence of desire for hastened death among terminally ill cancer patients and to identify factors corresponding to desire for hastened death. Design Prospective survey conducted in a 200-bed palliative care hospital in New York, NY.Ninety-two terminally ill cancer patients (60% female; 70% white; mean age, 65.9 years) admitted between June 1998 and January 1999 for end-of-life care who passed a cognitive screening test and provided sufficient data to permit analysis.Scores on the Schedule of Attitudes Toward Hastened Death (SAHD), a self-report measure assessing desire for hastened death among individuals with life-threatening medical illness.Sixteen patients (17%) were classified as having a high desire for hastened death based on the SAHD and 15 (16%) of 89 patients met criteria for a current major depressive episode. Desire for hastened death was significantly associated with a clinical diagnosis of depression (P=.001) as well as with measures of depressive symptom severity (P<.001) and hopelessness (P<.001). In multivariate analyses, depression (P=.003) and hopelessness (P<.001) provided independent and unique contributions to the prediction of desire for hastened death, while social support (P=.05) and physical functioning (P=.02) added significant but smaller contributions.Desire for hastened death among terminally ill cancer patients is not uncommon. Depression and hopelessness are the strongest predictors of desire for hastened death in this population and provide independent and unique contributions. Interventions addressing depression, hopelessness, and social support appear to be important aspects of adequate palliative care, particularly as it relates to desire for hastened death.

The Clinical Course of Advanced Dementia

2009-10-14

Susan L. Mitchell , Joan M. Teno , Dan K. Kiely +6 more

Dementia is a leading cause of death in the United States but is underrecognized as a terminal illness. The clinical course of nursing home residents with advanced dementia has not … Dementia is a leading cause of death in the United States but is underrecognized as a terminal illness. The clinical course of nursing home residents with advanced dementia has not been well described.We followed 323 nursing home residents with advanced dementia and their health care proxies for 18 months in 22 nursing homes. Data were collected to characterize the residents' survival, clinical complications, symptoms, and treatments and to determine the proxies' understanding of the residents' prognosis and the clinical complications expected in patients with advanced dementia.Over a period of 18 months, 54.8% of the residents died. The probability of pneumonia was 41.1%; a febrile episode, 52.6%; and an eating problem, 85.8%. After adjustment for age, sex, and disease duration, the 6-month mortality rate for residents who had pneumonia was 46.7%; a febrile episode, 44.5%; and an eating problem, 38.6%. Distressing symptoms, including dyspnea (46.0%) and pain (39.1%), were common. In the last 3 months of life, 40.7% of residents underwent at least one burdensome intervention (hospitalization, emergency room visit, parenteral therapy, or tube feeding). Residents whose proxies had an understanding of the poor prognosis and clinical complications expected in advanced dementia were much less likely to have burdensome interventions in the last 3 months of life than were residents whose proxies did not have this understanding (adjusted odds ratio, 0.12; 95% confidence interval, 0.04 to 0.37).Pneumonia, febrile episodes, and eating problems are frequent complications in patients with advanced dementia, and these complications are associated with high 6-month mortality rates. Distressing symptoms and burdensome interventions are also common among such patients. Patients with health care proxies who have an understanding of the prognosis and clinical course are likely to receive less aggressive care near the end of life.

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Oxford Textbook of Palliative Medicine

2009-01-01

G.W. Hanks , Nathan I. Cherny , Nicholas A. Christakis +3 more

This new edition of the Oxford Textbook of Palliative Medicine has been thoroughly updated to offer a truly global perspective in this field, and new sections include information on assessment … This new edition of the Oxford Textbook of Palliative Medicine has been thoroughly updated to offer a truly global perspective in this field, and new sections include information on assessment tools, care of patients with cancer, and the management of issues in the very young and the very old. It covers all the new and emerging topics, and the multi-disciplinary nature of palliative care is emphasized throughout, covering areas from ethical and communication issues, the treatment of symptoms, and the management of pain.

Patterns of Functional Decline at the End of Life

2003-05-13

June R. Lunney , Joanne Lynn , Daniel J. Foley +2 more

Clinicians have observed various patterns of functional decline at the end of life, but few empirical data have tested these patterns in large populations.To determine if functional decline differs among … Clinicians have observed various patterns of functional decline at the end of life, but few empirical data have tested these patterns in large populations.To determine if functional decline differs among 4 types of illness trajectories: sudden death, cancer death, death from organ failure, and frailty.Cohort analysis of data from 4 US regions in the prospective, longitudinal Established Populations for Epidemiologic Studies of the Elderly (EPESE) study. Of the 14 456 participants aged 65 years or older who provided interviews at baseline (1981-1987), 4871 died during the first 6 years of follow-up; 4190 (86%) of these provided interviews within 1 year before dying. These decedents were evenly distributed in 12 cohorts based on the number of months between the final interview and death.Self- or proxy-reported physical function (performance of 7 activities of daily living [ADLs]) within 1 year prior to death; predicted ADL dependency prior to death.Mean function declined across the 12 cohorts, simulating individual decline in the final year of life. Sudden death decedents were highly functional even in the last month before death (mean [95% confidence interval [CI]] numbers of ADL dependencies: 0.69 [0.19-1.19] at 12 months before death vs 1.22 [0.59-1.85] at the final month of life, P =.20); cancer decedents were highly functional early in their final year but markedly more disabled 3 months prior to death (0.77 [0.30-1.24] vs 4.09 [3.37-4.81], P<.001); organ failure decedents experienced a fluctuating pattern of decline, with substantially poorer function during the last 3 months before death (2.10 [1.49-2.70] vs 3.66 [2.94-4.38], P<.001); and frail decedents were relatively more disabled in the final year and especially dependent during the last month (2.92 [2.24-3.60] vs 5.84 [5.33-6.35], P<.001). After controlling for age, sex, race, education, marital status, interval between final interview and death, and other demographic differences, frail decedents were more than 8 times more likely than sudden death decedents to be ADL dependent (OR, 8.32 [95% CI, 6.46-10.73); cancer decedents, one and a half times more likely (OR, 1.57 [95% CI, 1.25-1.96]); and organ failure decedents, 3 times more likely (OR, 3.00 [95% CI, 2.39-3.77]).Trajectories of functional decline at the end of life are quite variable. Differentiating among expected trajectories and related needs would help shape tailored strategies and better programs of care prior to death.

Family Perspectives on End-of-Life Care at the Last Place of Care

2004-01-06

Joan M. Teno , Brian Clarridge , Virginia Casey +4 more

Over the past century, nursing homes and hospitals increasingly have become the site of death, yet no national studies have examined the adequacy or quality of end-of-life care in institutional … Over the past century, nursing homes and hospitals increasingly have become the site of death, yet no national studies have examined the adequacy or quality of end-of-life care in institutional settings compared with deaths at home.To evaluate the US dying experience at home and in institutional settings.Mortality follow-back survey of family members or other knowledgeable informants representing 1578 decedents, with a 2-stage probability sample used to estimate end-of-life care outcomes for 1.97 million deaths from chronic illness in the United States in 2000. Informants were asked via telephone about the patient's experience at the last place of care at which the patient spent more than 48 hours.Patient- and family-centered end-of-life care outcomes, including whether health care workers (1) provided the desired physical comfort and emotional support to the dying person, (2) supported shared decision making, (3) treated the dying person with respect, (4) attended to the emotional needs of the family, and (5) provided coordinated care.For 1059 of 1578 decedents (67.1%), the last place of care was an institution. Of 519 (32.9%) patients dying at home represented by this sample, 198 (38.2%) did not receive nursing services; 65 (12.5%) had home nursing services, and 256 (49.3%) had home hospice services. About one quarter of all patients with pain or dyspnea did not receive adequate treatment, and one quarter reported concerns with physician communication. More than one third of respondents cared for by a home health agency, nursing home, or hospital reported insufficient emotional support for the patient and/or 1 or more concerns with family emotional support, compared with about one fifth of those receiving home hospice services. Nursing home residents were less likely than those cared for in a hospital or by home hospice services to always have been treated with respect at the end of life (68.2% vs 79.6% and 96.2%, respectively). Family members of patients receiving hospice services were more satisfied with overall quality of care: 70.7% rated care as "excellent" compared with less than 50% of those dying in an institutional setting or with home health services (P<.001).Many people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support, and being treated with respect. Family members of decedents who received care at home with hospice services were more likely to report a favorable dying experience.

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The impact of advance care planning on end of life care in elderly patients: randomised controlled trial

2010-03-23

Karen Detering , A Hancock , Michael C. Reade +1 more

<b>Objective</b> To investigate the impact of advance care planning on end of life care in elderly patients. <b>Design</b> Prospective randomised controlled trial. <b>Setting</b> Single centre study in a university hospital … <b>Objective</b> To investigate the impact of advance care planning on end of life care in elderly patients. <b>Design</b> Prospective randomised controlled trial. <b>Setting</b> Single centre study in a university hospital in Melbourne, Australia. <b>Participants</b> 309 legally competent medical inpatients aged 80 or more and followed for six months or until death. <b>Interventions</b> Participants were randomised to receive usual care or usual care plus facilitated advance care planning. Advance care planning aimed to assist patients to reflect on their goals, values, and beliefs; to consider future medical treatment preferences; to appoint a surrogate; and to document their wishes. <b>Main outcome measures</b> The primary outcome was whether a patient's end of life wishes were known and respected. Other outcomes included patient and family satisfaction with hospital stay and levels of stress, anxiety, and depression in relatives of patients who died. <b>Results</b> 154 of the 309 patients were randomised to advance care planning, 125 (81%) received advance care planning, and 108 (84%) expressed wishes or appointed a surrogate, or both. Of the 56 patients who died by six months, end of life wishes were much more likely to be known and followed in the intervention group (25/29, 86%) compared with the control group (8/27, 30%; P<0.001). In the intervention group, family members of patients who died had significantly less stress (intervention 5, control 15; P<0.001), anxiety (intervention 0, control 3; P=0.02), and depression (intervention 0, control 5; P=0.002) than those of the control patients. Patient and family satisfaction was higher in the intervention group. <b>Conclusions</b> Advance care planning improves end of life care and patient and family satisfaction and reduces stress, anxiety, and depression in surviving relatives. <b>Trial registration</b> Australian New Zealand clinical trials registry ACTRN12608000539336.

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Recommendations for end-of-life care in the intensive care unit: A consensus statement by the American College of Critical Care Medicine

2008-03-01

Robert D. Truog , Margaret Campbell , J. Randall Curtis +5 more

Background: These recommendations have been developed to improve the care of intensive care unit (ICU) patients during the dying process. The recommendations build on those published in 2003 and highlight … Background: These recommendations have been developed to improve the care of intensive care unit (ICU) patients during the dying process. The recommendations build on those published in 2003 and highlight recent developments in the field from a U.S. perspective. They do not use an evidence grading system because most of the recommendations are based on ethical and legal principles that are not derived from empirically based evidence. Principal Findings: Family-centered care, which emphasizes the importance of the social structure within which patients are embedded, has emerged as a comprehensive ideal for managing end-of-life care in the ICU. ICU clinicians should be competent in all aspects of this care, including the practical and ethical aspects of withdrawing different modalities of life-sustaining treatment and the use of sedatives, analgesics, and nonpharmacologic approaches to easing the suffering of the dying process. Several key ethical concepts play a foundational role in guiding end-of-life care, including the distinctions between withholding and withdrawing treatments, between actions of killing and allowing to die, and between consequences that are intended vs. those that are merely foreseen (the doctrine of double effect). Improved communication with the family has been shown to improve patient care and family outcomes. Other knowledge unique to end-of-life care includes principles for notifying families of a patient's death and compassionate approaches to discussing options for organ donation. End-of-life care continues even after the death of the patient, and ICUs should consider developing comprehensive bereavement programs to support both families and the needs of the clinical staff. Finally, a comprehensive agenda for improving end-of-life care in the ICU has been developed to guide research, quality improvement efforts, and educational curricula. Conclusions: End-of-life care is emerging as a comprehensive area of expertise in the ICU and demands the same high level of knowledge and competence as all other areas of ICU practice.

Principles of Good Practice for the Translation and Cultural Adaptation Process for Patient-Reported Outcomes (PRO) Measures: Report of the ISPOR Task Force for Translation and Cultural Adaptation

2005-03-01

D Wild , Alyson Grove , Mona Martin +4 more

A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT Principal Investigators

1995-11-22

Alfred F. Connors , Neal V. Dawson , Norman A. Desbiens +7 more

To improve end-of-life decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying.A 2-year prospective observational study (phase I) with 4301 patients followed by … To improve end-of-life decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying.A 2-year prospective observational study (phase I) with 4301 patients followed by a 2-year controlled clinical trial (phase II) with 4804 patients and their physicians randomized by specialty group to the intervention group (n = 2652) or control group (n = 2152).Five teaching hospitals in the United States.A total of 9105 adults hospitalized with one or more of nine life-threatening diagnoses; an overall 6-month mortality rate of 47%.Physicians in the intervention group received estimates of the likelihood of 6-month survival for every day up to 6 months, outcomes of cardiopulmonary resuscitation (CPR), and functional disability at 2 months. A specifically trained nurse had multiple contacts with the patient, family, physician, and hospital staff to elicit preferences, improve understanding of outcomes, encourage attention to pain control, and facilitate advance care planning and patient-physician communication.The phase I observation documented shortcomings in communication, frequency of aggressive treatment, and the characteristics of hospital death: only 47% of physicians knew when their patients preferred to avoid CPR: 46% of do-not-resuscitate (DNR) orders were written within 2 days of death; 38% of patients who died spent at least 10 days in an intensive care unit (ICU); and for 50% of conscious patients who died in the hospital, family members reported moderate to severe pain at least half the time. During the phase II intervention, patients experienced no improvement in patient-physician communication (eg, 37% of control patients and 40% of intervention patients discussed CPR preferences) or in the five targeted outcomes, ie, incidence or timing of written DNR orders (adjusted ratio, 1.02; 95% confidence interval [CI], 0.90 to 1.15), physicians' knowledge of their patients' preferences not to be resuscitated (adjusted ratio, 1.22; 95% CI, 0.99 to 1.49), number of days spent in an ICU, receiving mechanical ventilation, or comatose before death (adjusted ratio, 0.97; 95% CI, 0.87 to 1.07), or level of reported pain (adjusted ratio, 1.15; 95% CI, 1.00 to 1.33). The intervention also did not reduce use of hospital resources (adjusted ratio, 1.05; 95% CI, 0.99 to 1.12).The phase I observation of SUPPORT confirmed substantial shortcomings in care for seriously ill hospitalized adults. The phase II intervention failed to improve care or patient outcomes. Enhancing opportunities for more patient-physician communication, although advocated as the major method for improving patient outcomes, may be inadequate to change established practices. To improve the experience of seriously ill and dying patients, greater individual and societal commitment and more proactive and forceful measured may be needed.

Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment

2008-10-07

Alexi A. Wright

Talking about death can be difficult. Without evidence that end-of-life discussions improve patient outcomes, physicians must balance their desire to honor patient autonomy against a concern of inflicting psychological harm.To … Talking about death can be difficult. Without evidence that end-of-life discussions improve patient outcomes, physicians must balance their desire to honor patient autonomy against a concern of inflicting psychological harm.To determine whether end-of-life discussions with physicians are associated with fewer aggressive interventions.A US multisite, prospective, longitudinal cohort study of patients with advanced cancer and their informal caregivers (n = 332 dyads), September 2002-February 2008. Patients were followed up from enrollment to death, a median of 4.4 months later. Bereaved caregivers' psychiatric illness and quality of life was assessed a median of 6.5 months later.Aggressive medical care (eg, ventilation, resuscitation) and hospice in the final week of life. Secondary outcomes included patients' mental health and caregivers' bereavement adjustment.One hundred twenty-three of 332 (37.0%) patients reported having end-of-life discussions before baseline. Such discussions were not associated with higher rates of major depressive disorder (8.3% vs 5.8%; adjusted odds ratio [OR], 1.33; 95% confidence interval [CI], 0.54-3.32), or more worry (mean McGill score, 6.5 vs 7.0; P = .19). After propensity-score weighted adjustment, end-of-life discussions were associated with lower rates of ventilation (1.6% vs 11.0%; adjusted OR, 0.26; 95% CI, 0.08-0.83), resuscitation (0.8% vs 6.7%; adjusted OR, 0.16; 95% CI, 0.03-0.80), ICU admission (4.1% vs 12.4%; adjusted OR, 0.35; 95% CI, 0.14-0.90), and earlier hospice enrollment (65.6% vs 44.5%; adjusted OR, 1.65;95% CI, 1.04-2.63). In adjusted analyses, more aggressive medical care was associated with worse patient quality of life (6.4 vs 4.6; F = 3.61, P = .01) and higher risk of major depressive disorder in bereaved caregivers (adjusted OR, 3.37; 95% CI, 1.12-10.13), whereas longer hospice stays were associated with better patient quality of life (mean score, 5.6 vs 6.9; F = 3.70, P = .01). Better patient quality of life was associated with better caregiver quality of life at follow-up (beta = .20; P = .001).End-of-life discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient quality of life and worse bereavement adjustment.

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Relationship Between Cancer Patients' Predictions of Prognosis and Their Treatment Preferences

1998-06-03

Jane C. Weeks

Context.—Previous studies have documented that cancer patients tend to overestimate the probability of long-term survival. If patient preferences about the trade-offs between the risks and benefits associated with alternative treatment … Context.—Previous studies have documented that cancer patients tend to overestimate the probability of long-term survival. If patient preferences about the trade-offs between the risks and benefits associated with alternative treatment strategies are based on inaccurate perceptions of prognosis, then treatment choices may not reflect each patient's true values.Objective.—To test the hypothesis that among terminally ill cancer patients an accurate understanding of prognosis is associated with a preference for therapy that focuses on comfort over attempts at life extension.Design.—Prospective cohort study.Setting.—Five teaching hospitals in the United States.Patients.—A total of 917 adults hospitalized with stage III or IV non–small cell lung cancer or colon cancer metastatic to liver in phases 1 and 2 of the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT).Main Outcome Measures.—Proportion of patients favoring life-extending therapy over therapy focusing on relief of pain and discomfort, patient and physician estimates of the probability of 6-month survival, and actual 6-month survival.Results.—Patients who thought they were going to live for at least 6 months were more likely (odds ratio [OR], 2.6; 95% confidence interval [CI], 1.8-3.7) to favor life-extending therapy over comfort care compared with patients who thought there was at least a 10% chance that they would not live 6 months. This OR was highest (8.5; 95% CI, 3.0-24.0) among patients who estimated their 6-month survival probability at greater than 90% but whose physicians estimated it at 10% or less. Patients overestimated their chances of surviving 6 months, while physicians estimated prognosis quite accurately. Patients who preferred life-extending therapy were more likely to undergo aggressive treatment, but controlling for known prognostic factors, their 6-month survival was no better.Conclusions.—Patients with metastatic colon and lung cancer overestimate their survival probabilities and these estimates may influence their preferences about medical therapies.

In Search of a Good Death: Observations of Patients, Families, and Providers

2000-05-16

Karen E. Steinhauser , Elizabeth C. Clipp , Maya McNeilly +3 more

Despite a recent increase in the attention given to improving end-of-life care, our understanding of what constitutes a good death is surprisingly lacking. The purpose of this study was to … Despite a recent increase in the attention given to improving end-of-life care, our understanding of what constitutes a good death is surprisingly lacking. The purpose of this study was to gather descriptions of the components of a good death from patients, families, and providers through focus group discussions and in-depth interviews. Seventy-five participants—including physicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved family members—were recruited from a university medical center, a Veterans Affairs medical center, and a community hospice. Participants identified six major components of a good death: pain and symptom management, clear decision making, preparation for death, completion, contributing to others, and affirmation of the whole person. The six themes are process-oriented attributes of a good death, and each has biomedical, psychological, social, and spiritual components. Physicians' discussions of a good death differed greatly from those of other groups. Physicians offered the most biomedical perspective, and patients, families, and other health care professionals defined a broad range of attributes integral to the quality of dying. Although there is no “right” way to die, these six themes may be used as a framework for understanding what participants tend to value at the end of life. Biomedical care is critical, but it is only a point of departure toward total end-of-life care. For patients and families, psychosocial and spiritual issues are as important as physiologic concerns.

A Comparison of Symptom Prevalence in Far Advanced Cancer, AIDS, Heart Disease, Chronic Obstructive Pulmonary Disease and Renal Disease

2006-01-01

João Paulo Consentino Solano , Bárbara Gomes , Irene J Higginson

American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care Into Standard Oncology Care

2012-02-07

Thomas J. Smith , Sarah Temin , Erin R. Alesi +7 more

An American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) offers timely clinical direction to ASCO's membership following publication or presentation of potentially practice-changing data from major studies. This … An American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) offers timely clinical direction to ASCO's membership following publication or presentation of potentially practice-changing data from major studies. This PCO addresses the integration of palliative care services into standard oncology practice at the time a person is diagnosed with metastatic or advanced cancer.Palliative care is frequently misconstrued as synonymous with end-of-life care. Palliative care is focused on the relief of suffering, in all of its dimensions, throughout the course of a patient's illness. Although the use of hospice and other palliative care services at the end of life has increased, many patients are enrolled in hospice less than 3 weeks before their death, which limits the benefit they may gain from these services. By potentially improving quality of life (QOL), cost of care, and even survival in patients with metastatic cancer, palliative care has increasing relevance for the care of patients with cancer. Until recently, data from randomized controlled trials (RCTs) demonstrating the benefits of palliative care in patients with metastatic cancer who are also receiving standard oncology care have not been available.Seven published RCTs form the basis of this PCO.Based on strong evidence from a phase III RCT, patients with metastatic non-small-cell lung cancer should be offered concurrent palliative care and standard oncologic care at initial diagnosis. While a survival benefit from early involvement of palliative care has not yet been demonstrated in other oncology settings, substantial evidence demonstrates that palliative care-when combined with standard cancer care or as the main focus of care-leads to better patient and caregiver outcomes. These include improvement in symptoms, QOL, and patient satisfaction, with reduced caregiver burden. Earlier involvement of palliative care also leads to more appropriate referral to and use of hospice, and reduced use of futile intensive care. While evidence clarifying optimal delivery of palliative care to improve patient outcomes is evolving, no trials to date have demonstrated harm to patients and caregivers, or excessive costs, from early involvement of palliative care. Therefore, it is the Panel's expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden. Strategies to optimize concurrent palliative care and standard oncology care, with evaluation of its impact on important patient and caregiver outcomes (eg, QOL, survival, health care services utilization, and costs) and on society, should be an area of intense research.ASCO's provisional clinical opinions (PCOs) reflect expert consensus based on clinical evidence and literature available at the time they are written and are intended to assist physicians in clinical decision making and identify questions and settings for further research. Because of the rapid flow of scientific information in oncology, new evidence may have emerged since the time a PCO was submitted for publication. PCOs are not continually updated and may not reflect the most recent evidence. PCOs cannot account for individual variation among patients and cannot be considered inclusive of all proper methods of care or exclusive of other treatments. It is the responsibility of the treating physician or other health care provider, relying on independent experience and knowledge of the patient, to determine the best course of treatment for the patient. Accordingly, adherence to any PCO is voluntary, with the ultimate determination regarding its application to be made by the physician in light of each patient's individual circumstances. ASCO PCOs describe the use of procedures and therapies in clinical trials and cannot be assumed to apply to the use of these interventions in the context of clinical practice. ASCO assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of ASCO's PCOs, or for any errors or omissions.

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Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer

2010-08-18

Jennifer S. Temel , Joseph A. Greer , Alona Muzikansky +7 more

Patients with metastatic non-small-cell lung cancer have a substantial symptom burden and may receive aggressive care at the end of life. We examined the effect of introducing palliative care early … Patients with metastatic non-small-cell lung cancer have a substantial symptom burden and may receive aggressive care at the end of life. We examined the effect of introducing palliative care early after diagnosis on patient-reported outcomes and end-of-life care among ambulatory patients with newly diagnosed disease.We randomly assigned patients with newly diagnosed metastatic non-small-cell lung cancer to receive either early palliative care integrated with standard oncologic care or standard oncologic care alone. Quality of life and mood were assessed at baseline and at 12 weeks with the use of the Functional Assessment of Cancer Therapy-Lung (FACT-L) scale and the Hospital Anxiety and Depression Scale, respectively. The primary outcome was the change in the quality of life at 12 weeks. Data on end-of-life care were collected from electronic medical records.Of the 151 patients who underwent randomization, 27 died by 12 weeks and 107 (86% of the remaining patients) completed assessments. Patients assigned to early palliative care had a better quality of life than did patients assigned to standard care (mean score on the FACT-L scale [in which scores range from 0 to 136, with higher scores indicating better quality of life], 98.0 vs. 91.5; P=0.03). In addition, fewer patients in the palliative care group than in the standard care group had depressive symptoms (16% vs. 38%, P=0.01). Despite the fact that fewer patients in the early palliative care group than in the standard care group received aggressive end-of-life care (33% vs. 54%, P=0.05), median survival was longer among patients receiving early palliative care (11.6 months vs. 8.9 months, P=0.02).Among patients with metastatic non-small-cell lung cancer, early palliative care led to significant improvements in both quality of life and mood. As compared with patients receiving standard care, patients receiving early palliative care had less aggressive care at the end of life but longer survival. (Funded by an American Society of Clinical Oncology Career Development Award and philanthropic gifts; ClinicalTrials.gov number, NCT01038271.)

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The effects of advance care planning on end-of-life care: A systematic review

2014-03-20

Arianne Brinkman‐Stoppelenburg , Judith Rietjens , Agnes van der Heide

Background: Advance care planning is the process of discussing and recording patient preferences concerning goals of care for patients who may lose capacity or communication ability in the future. Advance … Background: Advance care planning is the process of discussing and recording patient preferences concerning goals of care for patients who may lose capacity or communication ability in the future. Advance care planning could potentially improve end-of-life care, but the methods/tools used are varied and of uncertain benefit. Outcome measures used in existing studies are highly variable. Aim: To present an overview of studies on the effects of advance care planning and gain insight in the effectiveness of different types of advance care planning. Design: Systematic review. Data sources: We systematically searched PubMed, EMBASE and PsycINFO databases for experimental and observational studies on the effects of advance care planning published in 2000–2012. Results: The search yielded 3571 papers, of which 113 were relevant for this review. For each study, the level of evidence was graded. Most studies were observational (95%), originated from the United States (81%) and were performed in hospitals (49%) or nursing homes (32%). Do-not-resuscitate orders (39%) and written advance directives (34%) were most often studied. Advance care planning was often found to decrease life-sustaining treatment, increase use of hospice and palliative care and prevent hospitalisation. Complex advance care planning interventions seem to increase compliance with patients’ end-of-life wishes. Conclusion: The effects of different types of advance care planning have been studied in various settings and populations using different outcome measures. There is evidence that advance care planning positively impacts the quality of end-of-life care. Complex advance care planning interventions may be more effective in meeting patients’ preferences than written documents alone. More studies are needed with an experimental design, in different settings, including the community.

End-of-Life Practices in European Intensive Care Units

2003-08-13

Charles L. Sprung , Simon Cohen , Peter Sjökvist +7 more

ContextWhile the adoption of practice guidelines is standardizing many aspects of patient care, ethical dilemmas are occurring because of forgoing life-sustaining therapies in intensive care and are dealt with in … ContextWhile the adoption of practice guidelines is standardizing many aspects of patient care, ethical dilemmas are occurring because of forgoing life-sustaining therapies in intensive care and are dealt with in diverse ways between different countries and cultures.ObjectivesTo determine the frequency and types of actual end-of-life practices in European intensive care units (ICUs) and to analyze the similarities and differences.Design and SettingA prospective, observational study of European ICUs.ParticipantsConsecutive patients who died or had any limitation of therapy.InterventionProspectively defined end-of-life practices in 37 ICUs in 17 European countries were studied from January 1, 1999, to June 30, 2000.Main Outcome MeasuresComparison and analysis of the frequencies and patterns of end-of-life care by geographic regions and different patients and professionals.ResultsOf 31 417 patients admitted to ICUs, 4248 patients (13.5%) died or had a limitation of life-sustaining therapy. Of these, 3086 patients (72.6%) had limitations of treatments (10% of admissions). Substantial intercountry variability was found in the limitations and the manner of dying: unsuccessful cardiopulmonary resuscitation in 20% (range, 5%-48%), brain death in 8% (range, 0%-15%), withholding therapy in 38% (range, 16%-70%), withdrawing therapy in 33% (range, 5%-69%), and active shortening of the dying process in 2% (range, 0%-19%). Shortening of the dying process was reported in 7 countries. Doses of opioids and benzodiazepines reported for shortening of the dying process were in the same range as those used for symptom relief in previous studies. Limitation of therapy vs continuation of life-sustaining therapy was associated with patient age, acute and chronic diagnoses, number of days in ICU, region, and religion (P<.001).ConclusionThe limiting of life-sustaining treatment in European ICUs is common and variable. Limitations were associated with patient age, diagnoses, ICU stay, and geographic and religious factors. Although shortening of the dying process is rare, clarity between withdrawing therapies and shortening of the dying process and between therapies intended to relieve pain and suffering and those intended to shorten the dying process may be lacking.

Advance Directives and Outcomes of Surrogate Decision Making before Death

2010-03-31

Maria J. Silveira , Scott Y. H. Kim , Kenneth M. Langa

Recent discussions about health care reform have raised questions regarding the value of advance directives.We used data from survey proxies in the Health and Retirement Study involving adults 60 years … Recent discussions about health care reform have raised questions regarding the value of advance directives.We used data from survey proxies in the Health and Retirement Study involving adults 60 years of age or older who had died between 2000 and 2006 to determine the prevalence of the need for decision making and lost decision-making capacity and to test the association between preferences documented in advance directives and outcomes of surrogate decision making.Of 3746 subjects, 42.5% required decision making, of whom 70.3% lacked decision-making capacity and 67.6% of those subjects, in turn, had advance directives. Subjects who had living wills were more likely to want limited care (92.7%) or comfort care (96.2%) than all care possible (1.9%); 83.2% of subjects who requested limited care and 97.1% of subjects who requested comfort care received care consistent with their preferences. Among the 10 subjects who requested all care possible, only 5 received it; however, subjects who requested all care possible were far more likely to receive aggressive care as compared with those who did not request it (adjusted odds ratio, 22.62; 95% confidence interval [CI], 4.45 to 115.00). Subjects with living wills were less likely to receive all care possible (adjusted odds ratio, 0.33; 95% CI, 0.19 to 0.56) than were subjects without living wills. Subjects who had assigned a durable power of attorney for health care were less likely to die in a hospital (adjusted odds ratio, 0.72; 95% CI, 0.55 to 0.93) or receive all care possible (adjusted odds ratio, 0.54; 95% CI, 0.34 to 0.86) than were subjects who had not assigned a durable power of attorney for health care.Between 2000 and 2006, many elderly Americans needed decision making near the end of life at a time when most lacked the capacity to make decisions. Patients who had prepared advance directives received care that was strongly associated with their preferences. These findings support the continued use of advance directives.

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Patients' Expectations about Effects of Chemotherapy for Advanced Cancer

2012-10-24

Jane C. Weeks , Paul J. Catalano , Angel M. Cronin +4 more

Chemotherapy for metastatic lung or colorectal cancer can prolong life by weeks or months and may provide palliation, but it is not curative.We studied 1193 patients participating in the Cancer … Chemotherapy for metastatic lung or colorectal cancer can prolong life by weeks or months and may provide palliation, but it is not curative.We studied 1193 patients participating in the Cancer Care Outcomes Research and Surveillance (CanCORS) study (a national, prospective, observational cohort study) who were alive 4 months after diagnosis and received chemotherapy for newly diagnosed metastatic (stage IV) lung or colorectal cancer. We sought to characterize the prevalence of the expectation that chemotherapy might be curative and to identify the clinical, sociodemographic, and health-system factors associated with this expectation. Data were obtained from a patient survey by professional interviewers in addition to a comprehensive review of medical records.Overall, 69% of patients with lung cancer and 81% of those with colorectal cancer did not report understanding that chemotherapy was not at all likely to cure their cancer. In multivariable logistic regression, the risk of reporting inaccurate beliefs about chemotherapy was higher among patients with colorectal cancer, as compared with those with lung cancer (odds ratio, 1.75; 95% confidence interval [CI], 1.29 to 2.37); among nonwhite and Hispanic patients, as compared with non-Hispanic white patients (odds ratio for Hispanic patients, 2.82; 95% CI, 1.51 to 5.27; odds ratio for black patients, 2.93; 95% CI, 1.80 to 4.78); and among patients who rated their communication with their physician very favorably, as compared with less favorably (odds ratio for highest third vs. lowest third, 1.90; 95% CI, 1.33 to 2.72). Educational level, functional status, and the patient's role in decision making were not associated with such inaccurate beliefs about chemotherapy.Many patients receiving chemotherapy for incurable cancers may not understand that chemotherapy is unlikely to be curative, which could compromise their ability to make informed treatment decisions that are consonant with their preferences. Physicians may be able to improve patients' understanding, but this may come at the cost of patients' satisfaction with them. (Funded by the National Cancer Institute and others.).

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A systematic review of physicians' survival predictions in terminally ill cancer patients

2003-07-24

Paul Glare

<h3>Abstract</h3> <b>Objective</b> To systematically review the accuracy of physicians9 clinical predictions of survival in terminally ill cancer patients. <b>Data sources</b> Cochrane Library, Medline (1996-2000), Embase, Current Contents, and Cancerlit databases … <h3>Abstract</h3> <b>Objective</b> To systematically review the accuracy of physicians9 clinical predictions of survival in terminally ill cancer patients. <b>Data sources</b> Cochrane Library, Medline (1996-2000), Embase, Current Contents, and Cancerlit databases as well as hand searching. <b>Study selection</b> Studies were included if a physician9s temporal clinical prediction of survival (CPS) and the actual survival (AS) for terminally ill cancer patients were available for statistical analysis. Study quality was assessed by using a critical appraisal tool produced by the local health authority. <b>Data synthesis</b> Raw data were pooled and analysed with regression and other multivariate techniques. <b>Results</b> 17 published studies were identified; 12 met the inclusion criteria, and 8 were evaluable, providing 1563 individual prediction-survival dyads. CPS was generally overoptimistic (median CPS 42 days, median AS 29 days); it was correct to within one week in 25% of cases and overestimated survival by at least four weeks in 27%. The longer the CPS the greater the variability in AS. Although agreement between CPS and AS was poor (weighted κ 0.36), the two were highly significantly associated after log transformation (Spearman rank correlation 0.60, P < 0.001). Consideration of performance status, symptoms, and use of steroids improved the accuracy of the CPS, although the additional value was small. Heterogeneity of the studies9 results precluded a comprehensive meta-analysis. <b>Conclusions</b> Although clinicians consistently overestimate survival, their predictions are highly correlated with actual survival; the predictions have discriminatory ability even if they are miscalibrated. Clinicians caring for patients with terminal cancer need to be aware of their tendency to overestimate survival, as it may affect patients9 prospects for achieving a good death. Accurate prognostication models incorporating clinical prediction of survival are needed.

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Illness trajectories and palliative care

2005-04-28

Scott A Murray , Marilyn Kendall , Kirsty Boyd +1 more

When people with life threatening illnesses and their carers ask about prognosis (“How long have I got?”), they are often doing more than simply inquiring about life expectancy. Within this … When people with life threatening illnesses and their carers ask about prognosis (“How long have I got?”), they are often doing more than simply inquiring about life expectancy. Within this question is another, often unspoken, question about likely patterns of decline (“What will happen?”). One aid to answering both questions may be through the use of typical illness trajectories. Thinking in terms of these trajectories provides a broad timeframe and patterns of probable needs and interactions with health and social services that can, conceptually at least, be mapped out towards death. Such frameworks may help clinicians plan and deliver appropriate care that integrates active and palliative management. If patients and their carers gain a better understanding by considering illness trajectories this may help them feel in greater control of their situation and empower them to cope with its demands. An important implication for service planners is that different models of care will be appropriate for people with different illness trajectories. We review the main currently described illness trajectories at the end of life and draw out key clinical implications. We searched our own database of papers, conducted a Medline search, and approached experts for additional published references (further details available from SAM). We also re-examined primary data relating to illness trajectories from our previous studies investigating the palliative care needs of people with advanced lung cancer and heart failure.1 ### Different trajectories for different diseases A century ago, death was typically quite sudden, and the leading causes were infections, accidents, and childbirth. Today sudden death is less common, particularly in Western, economically developed, societies. Towards the end of life, most people acquire a serious progressive illness—cardiovascular disease, cancer, and respiratory disorders are the three leading causes—that increasingly interferes with their usual activities until death. Three distinct illness trajectories have been described so far for people …

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On death and dying.

1975-06-01

Elisabeth Kübler-Ross

Although most areas of human experience are nowadays discussed freely and openly, the subject of death is still surrounded by conventional attitudes and reticence that offer only fragile comfort because … Although most areas of human experience are nowadays discussed freely and openly, the subject of death is still surrounded by conventional attitudes and reticence that offer only fragile comfort because they evade the real issues. The dying may thus be denied the opportunity of sharing their feelings and discussing their needs with family, friends, or hospital staff. Although receiving devoted medical care, a dying patient is often socially isolated and avoided, since professional staff and students can find contact painful and embarrasing. Aware of the strains imposed on all sides by this situation, Dr Kubler-Ross established a seminar at the University of Chicago to consider the implications of terminal illness for patients and for those involved in their care. Patients invited to talk about their experience often found great relief in expressing their fear and anger and were able to move towards a state of acceptance and peace. The seminar, initially composed of students of medicine, sociology, psychology, and theology, but later joined by hospital staff and relatives of patients, enabled many members to come to terms with their own feelings and to respond constructi to what the patients had to teach them.

Rehospitalizations among Patients in the Medicare Fee-for-Service Program

2009-04-01

Stephen F. Jencks , Mark V. Williams , Eric A. Coleman

Reducing rates of rehospitalization has attracted attention from policymakers as a way to improve quality of care and reduce costs. However, we have limited information on the frequency and patterns … Reducing rates of rehospitalization has attracted attention from policymakers as a way to improve quality of care and reduce costs. However, we have limited information on the frequency and patterns of rehospitalization in the United States to aid in planning the necessary changes.

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[Actual causes of death].

1951-08-25

G O E Lignac

Palliative Performance Scale (PPS): A New Tool

1996-03-01

Fern Anderson , George Downing , J. Hill +2 more

The Palliative Performance Scale (PPS), a modification of the Karnofsky Performance Scale, is presented as a new tool for measurement of physical status in palliative care. Its initial uses in … The Palliative Performance Scale (PPS), a modification of the Karnofsky Performance Scale, is presented as a new tool for measurement of physical status in palliative care. Its initial uses in Victoria include communication, analysis of home nursing care workload, profiling admissions and discharges to the hospice unit, and, possibly, prognostication. We assessed 119 patients at home, of whom 87 (73%) had a PPS rating between 40% and 70%. Of 213 patients admitted to the hospice unit, 175 (83%) were PPS 20%-50% on admission. The average period until death for 129 patients who died on the unit was 1.88 days at 10% PPS upon admission, 2.62 days at 20%, 6.70 days at 30%, 10.30 days at 40%, 13.87 days at 50%. Only two patients at 60% or higher died in the unit. The PPS may become a basis for comparing drug costs at home and for studying the effects of treatments (e.g. hypodermoclysis) at various levels of physical performance. Validity and reliability testing are currently being undertaken.

Integration of Palliative Care Into Standard Oncology Care: American Society of Clinical Oncology Clinical Practice Guideline Update

2017-01-01

Betty Ferrell , Jennifer S. Temel , Sarah Temin +7 more

Purpose To provide evidence-based recommendations to oncology clinicians, patients, family and friend caregivers, and palliative care specialists to update the 2012 American Society of Clinical Oncology (ASCO) provisional clinical opinion … Purpose To provide evidence-based recommendations to oncology clinicians, patients, family and friend caregivers, and palliative care specialists to update the 2012 American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) on the integration of palliative care into standard oncology care for all patients diagnosed with cancer. Methods ASCO convened an Expert Panel of members of the ASCO Ad Hoc Palliative Care Expert Panel to develop an update. The 2012 PCO was based on a review of a randomized controlled trial (RCT) by the National Cancer Institute Physicians Data Query and additional trials. The panel conducted an updated systematic review seeking randomized clinical trials, systematic reviews, and meta-analyses, as well as secondary analyses of RCTs in the 2012 PCO, published from March 2010 to January 2016. Results The guideline update reflects changes in evidence since the previous guideline. Nine RCTs, one quasiexperimental trial, and five secondary analyses from RCTs in the 2012 PCO on providing palliative care services to patients with cancer and/or their caregivers, including family caregivers, were found to inform the update. Recommendations Inpatients and outpatients with advanced cancer should receive dedicated palliative care services, early in the disease course, concurrent with active treatment. Referral of patients to interdisciplinary palliative care teams is optimal, and services may complement existing programs. Providers may refer family and friend caregivers of patients with early or advanced cancer to palliative care services.

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Association Between Palliative Care and Patient and Caregiver Outcomes

2016-11-22

Dio Kavalieratos , Jennifer Corbelli , Di Zhang +7 more

<h3>Importance</h3> The use of palliative care programs and the number of trials assessing their effectiveness have increased. <h3>Objective</h3> To determine the association of palliative care with quality of life (QOL), … <h3>Importance</h3> The use of palliative care programs and the number of trials assessing their effectiveness have increased. <h3>Objective</h3> To determine the association of palliative care with quality of life (QOL), symptom burden, survival, and other outcomes for people with life-limiting illness and for their caregivers. <h3>Data Sources</h3> MEDLINE, EMBASE, CINAHL, and Cochrane CENTRAL to July 2016. <h3>Study Selection</h3> Randomized clinical trials of palliative care interventions in adults with life-limiting illness. <h3>Data Extraction and Synthesis</h3> Two reviewers independently extracted data. Narrative synthesis was conducted for all trials. Quality of life, symptom burden, and survival were analyzed using random-effects meta-analysis, with estimates of QOL translated to units of the Functional Assessment of Chronic Illness Therapy–palliative care scale (FACIT-Pal) instrument (range, 0-184 [worst-best]; minimal clinically important difference [MCID], 9 points); and symptom burden translated to the Edmonton Symptom Assessment Scale (ESAS) (range, 0-90 [best-worst]; MCID, 5.7 points). <h3>Main Outcomes and Measures</h3> Quality of life, symptom burden, survival, mood, advance care planning, site of death, health care satisfaction, resource utilization, and health care expenditures. <h3>Results</h3> Forty-three RCTs provided data on 12 731 patients (mean age, 67 years) and 2479 caregivers. Thirty-five trials used usual care as the control, and 14 took place in the ambulatory setting. In the meta-analysis, palliative care was associated with statistically and clinically significant improvements in patient QOL at the 1- to 3-month follow-up (standardized mean difference, 0.46; 95% CI, 0.08 to 0.83; FACIT-Pal mean difference, 11.36] and symptom burden at the 1- to 3-month follow-up (standardized mean difference, −0.66; 95% CI, −1.25 to −0.07; ESAS mean difference, −10.30). When analyses were limited to trials at low risk of bias (n = 5), the association between palliative care and QOL was attenuated but remained statistically significant (standardized mean difference, 0.20; 95% CI, 0.06 to 0.34; FACIT-Pal mean difference, 4.94), whereas the association with symptom burden was not statistically significant (standardized mean difference, −0.21; 95% CI, −0.42 to 0.00; ESAS mean difference, −3.28). There was no association between palliative care and survival (hazard ratio, 0.90; 95% CI, 0.69 to 1.17). Palliative care was associated consistently with improvements in advance care planning, patient and caregiver satisfaction, and lower health care utilization. Evidence of associations with other outcomes was mixed. <h3>Conclusions and Relevance</h3> In this meta-analysis, palliative care interventions were associated with improvements in patient QOL and symptom burden. Findings for caregiver outcomes were inconsistent. However, many associations were no longer significant when limited to trials at low risk of bias, and there was no significant association between palliative care and survival.

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Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel

2017-01-05

Rebecca L. Sudore , Hillary D. Lum , John J. You +7 more

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Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care

2017-09-01

Judith Rietjens , Rebecca L. Sudore , Michael Connolly +7 more

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Patient-centered communication in cancer care: Promoting healing and reducing suffering

2007-01-01

Ronald M. Epstein , Richard L. Street

A practical guide to using Interpretative Phenomenological Analysis in qualitative research psychology

2014-08-01

A Controlled Trial to Improve Care for Seriously III Hospitalized Patients

1995-11-22

Alfred F. Connors

<h3>Objectives.</h3> —To improve end-of-life decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying. <h3>Design.</h3> —A 2-year prospective observational study (phase I) with 4301 … <h3>Objectives.</h3> —To improve end-of-life decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying. <h3>Design.</h3> —A 2-year prospective observational study (phase I) with 4301 patients followed by a 2-year controlled clinical trial (phase II) with 4804 patients and their physicians randomized by specialty group to the intervention group (n=2652) or control group (n=2152). <h3>Setting.</h3> —Five teaching hospitals in the United States. <h3>Patients.</h3> —A total of 9105 adults hospitalized with one or more of nine life-threatening diagnoses; an overall 6-month mortality rate of 47%. <h3>Intervention.</h3> —Physicians in the intervention group received estimates of the likelihood of 6-month survival for every day up to 6 months, outcomes of cardiopulmonary resuscitation (CPR), and functional disability at 2 months. A specially trained nurse had multiple contacts with the patient, family, physician, and hospital staff to elicit preferences, improve understanding of outcomes, encourage attention to pain control, and facilitate advance care planning and patient-physician communication. <h3>Results.</h3> —The phase I observation documented shortcomings in communication, frequency of aggressive treatment, and the characteristics of hospital death: only 47% of physicians knew when their patients preferred to avoid CPR; 46% of do-not-resuscitate (DNR) orders were written within 2 days of death; 38% of patients who died spent at least 10 days in an intensive care unit (ICU); and for 50% of conscious patients who died in the hospital, family members reported moderate to severe pain at least half the time. During the phase II intervention, patients experienced no improvement in patient-physician communication (eg, 37% of control patients and 40% of intervention patients discussed CPR preferences) or in the five targeted outcomes, ie, incidence or timing of written DNR orders (adjusted ratio, 1.02; 95% confidence interval [Cl], 0.90 to 1.15), physicians' knowledge of their patients'preferences not to be resuscitated (adjusted ratio, 1.22; 95% Cl, 0.99 to 1.49), number of days spent in an ICU, receiving mechanical ventilation, or comatose before death (adjusted ratio, 0.97; 95% Cl, 0.87 to 1.07), or level of reported pain (adjusted ratio, 1.15; 95% Cl, 1.00 to 1.33). The intervention also did not reduce use of hospital resources (adjusted ratio, 1.05; 95% Cl, 0.99 to 1.12). <h3>Conclusions.</h3> —The phase I observation of SUPPORT confirmed substantial shortcomings in care for seriously ill hospitalized adults. The phase II intervention failed to improve care or patient outcomes. Enhancing opportunities for more patient-physician communication, although advocated as the major method for improving patient outcomes, may be inadequate to change established practices. To improve the experience of seriously ill and dying patients, greater individual and societal commitment and more proactive and forceful measures may be needed. (<i>JAMA</i>. 1995;274:1591-1598)

Death One Hour After Terminal Extubation in Children: Validation of a Machine Learning Model to Predict Cardiac Death After Withdrawal of Life-Sustaining Treatment in a Multicenter Cohort, 2009–2021

2025-06-25

Meredith C. Winter , Alice X. Zhou , Eugene Laksana +7 more | Pediatric Critical Care Medicine

Objectives: In the PICU, predicting death within 1 hour after terminal extubation (TE) is valuable in augmenting family counseling and in identifying suitable candidates for organ donation after circulatory determination … Objectives: In the PICU, predicting death within 1 hour after terminal extubation (TE) is valuable in augmenting family counseling and in identifying suitable candidates for organ donation after circulatory determination of death (DCDD). The objective of this study was to train and validate a machine learning model to predict death within 1 hour after TE. Design: The Death One Hour After Terminal Extubation (DONATE) database was generated using multicenter retrospective data from 2009 to 2021. Data covering demographics, clinical features, vital signs, laboratory values, ventilator settings, medications, and procedures were collected. Machine learning models were trained to predict whether a pediatric patient would die within 1 hour after TE and evaluated on a holdout set. Setting: Ten U.S. PICUs. Patients: Children and adolescents, 0–21 years old, who died after TE ( n = 957). Interventions: None. Measurements and Main Results: The final model was a parsimonious extra-trees model with 21 input features. It was trained on the 2009–2018 data from eight sites ( n = 634) and evaluated on a holdout set comprised of the 2019–2021 data of all ten sites ( n = 323), representing temporal and external validation. The area under the receiver operating characteristic curve and 95% CI was 0.84 (95% CI, 0.81–0.87). At a sensitivity of 90%, the positive predictive value (PPV) was 88%, the negative predictive value (NPV) was 70%, and the number needed to alert (NNA) was 1.14. Among potential organ donors, at the same sensitivity level, the PPV was 86%, the NPV was 74%, and the NNA was 1.17. Conclusions: Our model, trained and validated on multisite data, predicted whether a child will die within 1 hour of TE with high discrimination and a low false alarm rate. This finding has important applications to end-of-life counseling and institutional resource utilization when families wish to attempt DCDD.

Palliativmedizinische Notfallpatienten – immer häufiger im Rettungsdienst

2025-06-25

Volker Wanka | retten!

Palliativmedizin im Rettungsdienst – Herausforderungen, Strukturen und Handlungsempfehlungen

2025-06-25

Christina-Marie Krause , Sebastian Koch | retten!

Notfälle bei Palliativpatienten im Rettungsdienst – ethische und juristische Aspekte

2025-06-25

Jens Tiesmeier , Karlheinz Pfaff , Andrea Greulich | retten!

Re-Examining Early in Early Palliative Care: Precedent, Reality, and Future Research Priorities

2025-06-25

Laura A. Petrillo , Julia L. Agne | JCO Oncology Practice

Exploring Discharge to Hospice for Dementia-Related Health Care Among Racial and Ethnic Minority Groups in Southern Nevada

2025-06-24

Jalal Uddin , Drew Blasco , Timothy J. Grigsby +3 more | Journal of Palliative Medicine

Background: Nearly 50,000 people aged 65 and older are living with dementia in Nevada. The number of Nevadans living with dementia is projected to increase to 65,000 or more by … Background: Nearly 50,000 people aged 65 and older are living with dementia in Nevada. The number of Nevadans living with dementia is projected to increase to 65,000 or more by 2025-the third largest growth rate in the United States. Objective: We examined differences in discharge to hospice among racial and ethnic minority groups living with dementia and utilizing health care in Southern Nevada. We also explored differences by other demographic and health care-related characteristics. Methods: Data analyzed were from comprehensive health care data records from multiple health care settings in Nevada and for all causes for the years 2013-2021. Bivariate analysis and multiple logistic regression were utilized to examine differences in discharge to hospice by racial and ethnic minority groups accounting for demographic and health care-related characteristics. Results: During 2013-2021, 131,900 dementia-related health care encounters in Southern Nevada from both inpatient and outpatient visits occurred. Only 6% (n = 8,490) of dementia health care utilizers in Southern Nevada were discharged to hospice, which differed by racial and ethnic minority groups (p < 0.001). Black, Asian Pacific Islander, and Hispanic/Latino older adults living with dementia had between 15% to 26% lower odds of being discharged to hospice compared with their White counterparts. Age, gender, health insurance type, and inpatient encounters and year were also significantly associated with being discharged to hospice. Conclusions and Relevance: Findings from this study highlight the need to better understand potential disparities in access to hospice care among racial and ethnic minority communities living with dementia. Interventions to improve equitable access to hospice care among diverse populations in Southern Nevada should be explored.

Perioperative Advance Care Planning und Therapiezielplanung

2025-06-24

Peter Paal | Deleted Journal

Nationwide Trends and Disparities in End-of-Life Care for Acute Myeloid Leukemia: A 2019–2021 NIS Analysis of Palliative Care Utilization and Hospitalization Costs

2025-06-24

Nandhini Iyer , Krishna Doshi , Sripada Preetham Kasire +2 more | American Journal of Hospice and Palliative Medicine®

Purpose: Acute myeloid leukemia (AML) is a high-mortality hematologic malignancy, particularly in older adults. Early palliative care (PC) improves symptom control, quality of life, and outcomes, yet disparities in utilization … Purpose: Acute myeloid leukemia (AML) is a high-mortality hematologic malignancy, particularly in older adults. Early palliative care (PC) improves symptom control, quality of life, and outcomes, yet disparities in utilization persist. This study evaluated trends in inpatient PC use among AML patients and associations with mortality, costs, and complications. Patients and Methods: A retrospective cohort analysis was conducted using the 2019-2021 National Inpatient Sample. AML cases were identified via ICD-10 codes and stratified by PC use. The primary outcome was inpatient mortality; secondary outcomes included length of stay (LOS), costs, and complications. Analyses included t-tests, chi-square tests, and logistic regression adjusted for demographic, socioeconomic, and hospital-level factors. Results: Among 2 20 790 AML hospitalizations, 27 540 (12.4%) involved PC. PC recipients were older (67.4 vs 58.7 years, P < .01) and more often White (75.3% vs 70.7%, P < .01). PC use was lower among Black (OR 0.90, P = .05), Hispanic (OR 0.70, P < .01), and Asian (OR 0.77, P < .01) patients. Utilization was highest in urban teaching hospitals (89.2%, P < .01) and Medicare beneficiaries (OR 1.87, P < .01). PC use was associated with higher mortality (37.4% vs 4.4%, OR 11.74, P < .01), longer LOS (12.9 vs 12.3 days, P < .01), increased costs ($214,915 vs $174,193, P < .01), and more complications (all P < .01). Conclusion: PC utilization in AML is associated with poorer clinical metrics, likely reflecting late-stage intervention. Earlier PC integration and addressing disparities are urgently needed to improve equity, outcomes, and resource use in AML care.

Are Inappropriate Referrals Hindering The Two-Week Wait Cancer Pathway?

2025-06-24

Farooq A. Chaudhry , Abdul Karim , Ijaz Ur Rehman | International Journal of Oral and Maxillofacial Surgery

Collaborative care model for end-of-life support in a residential care home: two case reports

2025-06-23

Chit Wai Wong , Man Fuk Leung , Ching Yu Lam +6 more | Asian Journal of Gerontology and Geriatrics

A repertoire and critical review of international resources relevant to medical assistance in dying where a mental disorder is the sole underlying medical condition

2025-06-23

Caroline Favron‐Godbout , Izadora Foster , Éric Racine | International Journal of Law and Psychiatry

Multisite Randomized Trial of Inpatient Palliative Care Intervention for Patients Undergoing Hematopoietic Stem Cell Transplantation

2025-06-23

Areej El‐Jawahri , Thomas W. LeBlanc , Alison R. Kavanaugh +7 more | Journal of Clinical Oncology

Patients undergoing hematopoietic stem cell transplantation (HSCT) and their caregivers endure immense physical and psychological symptoms, which result in quality-of-life (QOL) impairments during HSCT. We conducted a multisite randomized trial … Patients undergoing hematopoietic stem cell transplantation (HSCT) and their caregivers endure immense physical and psychological symptoms, which result in quality-of-life (QOL) impairments during HSCT. We conducted a multisite randomized trial among adults undergoing autologous or allogeneic HSCT at three academic institutions. Patients were randomly assigned to an inpatient palliative care (PC) intervention or usual care. Intervention patients met with PC clinicians twice weekly during the HSCT hospitalization. Patients assigned to usual care could be referred to PC as per standard of care. We assessed QOL (patient: Functional Assessment of Cancer Therapy-Bone Marrow Transplant; caregiver: Caregiver-Oncology-QOL), depression and anxiety symptoms (Hospital-Anxiety-and-Depression-Scale), and patients' post-traumatic stress disorder (PTSD) symptoms (PTSD Checklist) at baseline, week 2, and 3 and 6 months post-HSCT. The primary end point was patients' QOL at week 2 during hospitalization when patients experience their QOL nadir. We used linear regression, adjusting for baseline scores, to evaluate the effect of the intervention on patient-reported outcomes at week 2. We used linear mixed-effect models to assess the effect of the intervention on study outcomes longitudinally. We enrolled 68.7% (360/524) of eligible patients between October 2018 and July 2022. Compared with those receiving usual care, patients receiving the intervention reported better QOL (adjusted mean difference [B], 6.3; SE, 0.1; P < .001), lower depression (B, -1; SE, 0.4; P = .026), and fewer PTSD symptoms (B, -1.9; SE, 0.9; P = .046) at week 2. Patient-reported anxiety did not differ significantly between groups at week 2. In longitudinal analyses, patients receiving the intervention reported a steeper decline in PTSD symptoms over 6 months post-HSCT (slope difference, -0.9; SE, 0.7; P = .012). All other patient-reported outcomes did not differ longitudinally between the groups. PC led to substantial improvements in patients' QOL, depression, and PTSD symptoms with sustained effects on PTSD symptoms up to 6 months post-HSCT.

The level of nurses’ knowledge about and attitude towards caring for dying patients and relationship with evidence-based practice among nurses of primary health care organisations in Kazakhstan: a cross‑sectional study

2025-06-23

Alexandra Masharipova , Nasikhat Nurgaliyeva , Gulmira Derbissalina +2 more | Australian journal of advanced nursing

The supportive oncology landscape: current status

2025-06-23

Ye Myint Aung , J. Deane Waldman , Jacquelyn Jackson +3 more | Supportive Care in Cancer

Primary care providers and their needs caring for cancer survivors: a qualitative study

2025-06-23

Jean C. Yi , Casey Walsh , Eric J. Chow +3 more | Journal of Cancer Survivorship

Digital Decision Aids to Support Decision-Making in Palliative and End-of-Life Dementia Care: Systematic Review and Meta-Analysis

2025-06-23

Jie Zhong , Wei Liang , Tongyao Wang +5 more | Journal of Medical Internet Research

Making a care-related decision is a complex cognitive process. Patient decision aids could provide information on potential options about risks and benefits, incorporate individual values and preferences, and help people … Making a care-related decision is a complex cognitive process. Patient decision aids could provide information on potential options about risks and benefits, incorporate individual values and preferences, and help people with dementia or their family carers make decisions about palliative and end-of-life care. This systematic review aimed to critically evaluate and synthesize evidence on the effectiveness of digital decision aids to support decision-making in palliative and end-of-life care for patients with dementia, their family carers, or clinicians. A systematic literature search in 4 health-related databases (PubMed, Embase, CINAHL, and Web of Science) was performed in September 2024. Articles were included if the study focused on the development and evaluation of a digital decision support tool on end-of-life dementia care, used an experimental design, and was available in full text in English. Studies using a nonexperimental design were excluded. The Cochrane Collaboration's Risk of Bias Tool Version 2.0 or the Risk of Bias in Non-randomized Studies of Interventions Version 2.0 was used to assess risk of bias. Narrative synthesis and meta-analyses were performed to comprehensively summarize the technologies and outcomes of the decision aids. The literature search across datasets identified a total of 1274 records. With an additional 5 records from citation searching and reference reviewing, a total of 20 articles were included, with 10 studies using data from randomized controlled trials (RCTs) and 10 pretest-posttest pilot studies. Technologies of visual aids, videos, web pages, and telehealth were reported in the included studies to support decision-making for end-of-life dementia care. Most decision aids focused on the decision about the primary goal of care (life-prolonging care, limited care, and comfort care), except for 1 visual aid focusing on the decisions about feeding tube placement and drug treatment for dementia. Most decision aids engaged both patients and their family carers. Pilot studies examining feasibility showed that most participants found these decision aids relevant to their needs and easy to use, and were able to complete the intervention sessions. Meta-analyses of 4 RCTs showed that video decision aids were effective in increasing the proportion of participants opting for comfort care (odds ratio 3.81, 95% CI 1.92-7.56) but inconclusive for the proportion of documented do-not-hospitalize orders (odds ratio 1.60, 95% CI 0.70-3.67), compared to the control group. Internet-based decision aids offer a feasible and acceptable approach to support the shared decision-making between patients, families, and clinicians. The included studies reported various outcome measures, including preferred goal of care, quality of palliative care, decision-making performance, and health care use. More large-scale RCTs are needed, and consistent outcome measures should be considered to evaluate the effects of end-of-life decision aids. PROSPERO CRD42024621321; https://www.crd.york.ac.uk/PROSPERO/view/CRD42024621321.

Differences in travel burden between patients with self-reported curable and incurable cancer: results from a Dutch flash mob study

2025-06-22

Moyke A. J. Versluis , Elianne C S de Boer , Lonneke V. van de Poll‐Franse +7 more | Supportive Care in Cancer

Abstract Purpose To explore travel burden in patients with self-reported curable and incurable cancer. Method A 2-day flash mob study was conducted in March 2023 among patients visiting medical oncology … Abstract Purpose To explore travel burden in patients with self-reported curable and incurable cancer. Method A 2-day flash mob study was conducted in March 2023 among patients visiting medical oncology departments in 65 Dutch hospitals. Disease status was self-reported. Patients completed a questionnaire on travel time (one-way), travel problems, and willingness to travel. Descriptive analyses and logistic regression analyses were used to assess travel burden and its associated factors. Results In total, 991 patients with curable and 1959 with incurable cancer were included. Patients with curable cancer more often reported daily or weekly hospital visits (63% vs. 22%, p < 0.001) and a travel time of less than 30 min (78% vs. 73%, p = 0.005). Almost one-third of patients with curable (28%) and incurable cancer (29%) experienced some travel problems. Patients with worse physical functioning and longer travel times were more likely to experience travel problems. Disease status was not associated with experiencing travel problems or the willingness to travel for oncological care. Instead, willingness to travel was associated with patients’ level of education, physical functioning, and tumour type. Conclusion Being diagnosed with self-reported curable or incurable cancer was not associated with experiencing travel problems or the willingness to travel for oncological care. Experiencing travel problems was associated with physical functioning and travel time, and the willingness to travel was associated with level of education, physical functioning, and tumour type. To ensure accessible and patient-centred care, physicians should be aware of these potential barriers and aim to provide well-coordinated, personalised care close to home.

Cancer progression: how to announce it? The perspective of physicians and nurses

2025-06-21

Julia Kolly , Sophie Lelorain , Kristopher Lamore | Humanities and Social Sciences Communications

Unmet needs and emotional well-being of family caregivers of adult patients with cancer in Oman: a cross-sectional study

2025-06-21

Eilean Rathinasamy Lazarus , Nasser Al Salmi , Joshua Kanaabi Muliira | Supportive Care in Cancer

Thinking about the End: Addressing Resident Perceptions of Palliative Care in the Emergency Department

2025-06-21

Max Trojano , Herbert Goldenberg , Kendall Stevens +2 more | Western Journal of Emergency Medicine

Anaemia investigation and treatment in hospice inpatients: palliative medicine consultants attitudes and practices survey

2025-06-20

Mary Teresa Kennedy , Jessica Lee , Marie Murphy +5 more | BMJ Supportive & Palliative Care

Assessment of Resident Physicians’ Knowledge, Attitudes, and Practices Concerning Advance Care Planning: A Cross-Sectional Study

2025-06-20

Gloria Y Ojerinde , Kahee A. Mohammed | Cureus

Increasing Care Partners’ Capacity for Supporting Individuals Living with Dementia Through Bravo Zulu: Achieving Excellence in Relationship-Centered Dementia Care

2025-06-20

Jennifer Carson , Taniya J. Koswatta , Samantha Hoeper +1 more | International Journal of Environmental Research and Public Health

The need for person- and relationship-centered care (PCC/RCC) in Alzheimer’s disease and other dementias is well established. Recognizing the limitations of PCC in fully honoring the intricate interdependencies between care … The need for person- and relationship-centered care (PCC/RCC) in Alzheimer’s disease and other dementias is well established. Recognizing the limitations of PCC in fully honoring the intricate interdependencies between care partners and persons living with dementia, a new training program called Bravo Zulu was developed. This comprehensive, 12-hour dementia training program aims to enhance personhood beliefs and self-efficacy among care partners, improving the experience of care and support for both people living with dementia and their care partners. Responses from 182 participants who completed the training were analyzed using paired t-tests to assess changes in personhood beliefs and self-efficacy. The Bravo Zulu training produced significant increases in both personhood beliefs and self-efficacy. Notably, healthcare professionals without prior care partner training exhibited the greatest gains in personhood beliefs, while participants who were not direct care partners showed substantial improvements in self-efficacy. Overall, these findings support the concept of tailoring dementia education to ensure care partners and healthcare professionals are able to provide culturally competent care that is aligned with the diverse backgrounds of people living with dementia. Expanding access to high-quality interactive programs such as Bravo Zulu can contribute to strengthening the dementia care workforce and improving care experiences for all involved.

Quality indicators and patient outcome measures for palliative care in cancer patients: a systematic review

2025-06-20

Chiu‐Wan Ng , Moira Hegyi , Grant Lewison +7 more | ecancermedicalscience

Why physician-assisted suicide has no place in the NHS

2025-06-20

Sheila Hollins , Ilora Finlay , Ruslan Zinchenko | BMJ Supportive & Palliative Care

The UK is currently debating legislation to allow physician-assisted suicide for competent, terminally ill adults. Though not explicit, it is likely to be delivered through the National Health Service (NHS). … The UK is currently debating legislation to allow physician-assisted suicide for competent, terminally ill adults. Though not explicit, it is likely to be delivered through the National Health Service (NHS). International evidence shows that integrating assisted suicide and euthanasia into mainstream healthcare increases uptake and rate of growth as well as broadens eligibility criteria. In this editorial, we argue that it should not be part of the NHS, since it is not a medical treatment, lacks a robust evidence base and fails to meet regulatory standards. The proposed framework for assessing decision-making capacity is unsuitable, and psychiatrists are not the right clinicians to be involved.

Reasons for and Congruence Between Preferred and Actual Place of Death Among Cancer Patients Receiving End-of-Life Care: A Cross-Cultural Multicenter Prospective Cohort Study in East Asia

2025-06-20

Chiu‐Hsien Yang , Chien‐Yi Wu , Shao‐Yi Cheng +7 more | Cancers

Background/Objectives: The place where a person dies serves as an indicator of end-of-life care quality. This study aims to identify the congruence of place of death (POD) and the reasons … Background/Objectives: The place where a person dies serves as an indicator of end-of-life care quality. This study aims to identify the congruence of place of death (POD) and the reasons behind decision-making among terminally ill cancer patients in East Asia. Methods: We conducted a prospective multicenter cohort study in palliative care units in Japan, Korea, and Taiwan. Data were collected by the responsible physicians during routine clinical practice. Sankey diagrams were applied to present changes in reasons for POD incongruence. Results: A total of 2638 participants from 37 palliative care units in the three countries were enrolled, and most of them died at PCUs (Japan: 95.7%, Korea: 94%, Taiwan: 82%, p < 0.05). The congruence rate of the preferred and actual POD among PCU inpatients ranged from 70% to 80%. Availability of end-of-life care is the most common reason for preferred and eventual PCU death (78.6%, 72.2%, and 52.1%, respectively, p < 0.05). However, 13–22% of patients admitted to PCUs still preferred to die at home, for which traditional culture (20.2%, 40.8%, and 82%, respectively, p < 0.05) or family influence (44.4%, 38.8%, and 51.7%, respectively, p > 0.05) are the main reasons. Cultural and environmental factors, such as influences from family members’ preferences in the three countries or the ownership of housing/housing settings in Japan, are the main challenges in achieving POD congruence. Conclusions: Culturally inclusive strategies in clinical practice and policy implementation for identifying the preferred POD, enhancing communication among stakeholders, and facilitating transitional support may improve the quality of goal-concordant care.

Palliative Care Needs Assessment for Emergency Medicine Residents

2025-06-19

Marilyn Harrington , Kit McCann | Western Journal of Emergency Medicine

Just-in-case drugs in the dying: home deaths retrospective chart review

2025-06-19

Paul Rutter , Paul Howard , Sandra Clawson +1 more | BMJ Supportive & Palliative Care

Objectives To evaluate whether the Isle of Wight (IoW) Just-in-Case (JIC) scheme to supply and administer anticipatory medication to end-of-life patients was performing to an appropriate level of performance. Methods … Objectives To evaluate whether the Isle of Wight (IoW) Just-in-Case (JIC) scheme to supply and administer anticipatory medication to end-of-life patients was performing to an appropriate level of performance. Methods A retrospective chart review was conducted on patients who were considered end of life and who died at home on the IoW during 2022. Results JIC medication was prescribed to 88% (n=70/80) of patients. Of these patients, half were administered at least four of the five medicines listed on the IoW JIC scheme. Almost three-quarters (71%, n=50/70) of patients had the standard dosage regimens amended to provide individualised treatment, and 96% (n=67/70) of patients saw some alterations to their ongoing management after initialisation of treatment. The time between prescribing and administration of JIC medication was short. Conclusions The JIC scheme on the IoW allowed patients to receive timely and individualised care. One or more JIC drugs were administered to a higher proportion of patients than in previous studies; further work is required to establish why (eg, the use of a 24/7 home visiting palliative care nursing team in this locality) and whether this led to improved family confidence that symptoms were effectively controlled.

Racial disparities in analgesic and psychiatric medication use during end-of-life care in advanced-stage colorectal cancer: A Retrospective Cohort Study

2025-06-19

John M. Allen , Olga M. Trejos Kweyete , Yi Guo +6 more | Cancer Research Communications

Abstract This study examined racial and ethnic disparities in the use of analgesic and psychiatric medications during end-of-life care among Medicare beneficiaries with advanced-stage colorectal cancer. Using the SEER-Medicare linked … Abstract This study examined racial and ethnic disparities in the use of analgesic and psychiatric medications during end-of-life care among Medicare beneficiaries with advanced-stage colorectal cancer. Using the SEER-Medicare linked database from 2005 to 2017, we identified 28,212 patients with stage IV colorectal cancer who died within one year of diagnosis. Multivariable logistic regression models were used to assess differences in medication use by race and ethnicity. Compared to non-Hispanic White patients, Black patients had significantly lower odds of opioid use (adjusted odds ratio [aOR]: 0.86; 95% confidence interval [CI]: 0.80–0.93) and overall analgesic use, while Hispanic patients had higher use of opioids (aOR: 1.12; 95% CI: 1.03–1.22) and non-opioid analgesics (aOR: 1.22; 95% CI: 1.06–1.40). Asian patients had increased non-opioid use (aOR: 1.71; 95% CI: 1.44–2.03) and decreased skeletal muscle relaxant use (aOR: 0.59; 95% CI: 0.43–0.82). Across all minority groups, psychiatric medication use was consistently lower than in non-Hispanic White patients. These disparities persisted after adjusting for demographic, clinical, and socioeconomic factors. Findings highlight the urgent need for equitable, culturally responsive symptom management strategies to improve the quality of end-of-life care in this population.

Policy nudges toward medicalizing death and their impact on planetary health

2025-06-19

Hayden P. Nix , Myles Sergeant , Nabha Shetty | Healthcare Management Forum

Despite most Canadians preferring to die at home, over 50% die in hospitals, a setting often discordant with patient-centered end-of-life care and environmentally harmful. This article argues that healthcare policies … Despite most Canadians preferring to die at home, over 50% die in hospitals, a setting often discordant with patient-centered end-of-life care and environmentally harmful. This article argues that healthcare policies unintentionally “nudge” patients and providers towards the medicalization of death, contributing to low-value care and significant greenhouse gas emissions. We analyze how inaccessibility to primary and palliative care, default “full code” status, overspecialization, and inadequate home-care supports perpetuate hospital deaths. Using an illustrative case, we demonstrate how these policies influence care trajectories from outpatient to hospital admission and disposition planning. Our aim is to highlight these underrecognized downstream effects to inform health leaders about opportunities to improve end-of-life care quality, align with patient preferences, and secondarily, benefit planetary health.

<i>Letter:</i> Response to Feder et al., Use of Hospice and End-of-Life Care Quality Among Medical Centers with High Versus Lower Specialist Palliative Care Reach Among People with Heart Failure: An Observational Study

2025-06-19

Shelli Feder , Tracy Shamas , Kathleen M. Akgün | Journal of Palliative Medicine

Wenn der Tod durch die für das Leben geöffnete Tür hereinkommt

2025-06-19

Anne-Kathrin Wenk | Monatsschrift Kinderheilkunde

Psychological Distress and Kidney Failure as Predictors of Chemoradiotherapy Toxicity and Quality of Life in Patients with Head and Neck Cancer

2025-06-19

Daniela Jicman , Alin Laurențiu Tatu , Alina-Maria Lescai +4 more | Healthcare

Background: Quality of life (QoL) in oncology patients is shaped by the interplay of biological, psychological and treatment-related factors. While prior studies have addressed the independent effects of treatment toxicity … Background: Quality of life (QoL) in oncology patients is shaped by the interplay of biological, psychological and treatment-related factors. While prior studies have addressed the independent effects of treatment toxicity and psychological distress, little is known about the interaction between depressive-anxious disorders, kidney failure and haematological toxicity on QoL among patients with head and neck cancer undergoing chemoradiotherapy. Objective: This study aims to examine the combined effect of haematological toxicity, depressive-anxious disorders and chronic renal disease on the total QLQ-H&N43 score, a validated measure of QoL in patients with head and neck cancer. Methods: A total of 93 patients were included in an observational study. PROCESS macro for SPSS was used to test the three-way interaction between haematological toxicity (X), depressive-anxious disorders (W) and kidney failure (Z) on QoL (Y). Results: The three-way interaction was statistically significant (β = 31.04, p = 0.032), accounting for 18.9% of the variance in QLQ-H&N43 scores (R² = 0.1888). Patients presenting both depressive-anxious disorders and renal comorbidities reported higher QoL scores, indicating poorer quality of life in the presence of severe treatment toxicity. Conclusions: Psychological distress and kidney failure may synergistically exacerbate the negative effects of chemoradiotherapy toxicity on quality of life. These findings underscore the need for integrated care models addressing both psychological vulnerability and medical comorbidities in oncology.

Deseo anticipado de muerte en personas mayores residentes de población española: estudio descriptivo

2025-06-19

Rosa Ruíz , Marian Navarro Chamizo , E. González +3 more | Revista Española de Geriatría y Gerontología

Enhancing Person-Centred Dementia Care Through Self-Experience: European Perspectives From a Qualitative Study

2025-06-19

Janina Wittmann , Gabriele Meyer , Fania C.M. Dassen +6 more | Dementia

Understanding the perspectives of people with dementia is crucial for providing person-centred care. Self-experience practices in caregiver training could foster empathy by simulating conditions individuals may encounter. This European study … Understanding the perspectives of people with dementia is crucial for providing person-centred care. Self-experience practices in caregiver training could foster empathy by simulating conditions individuals may encounter. This European study examines the potential contribution of self-experience practices to improving understanding and empathy towards people with dementia. A qualitative approach within the interpretative paradigm was employed to investigate perspectives on self-experience practices in dementia care through focus groups and individual interviews. Participants were people with dementia, informal caregivers, and professionals with experience in simulation-based dementia training and/or communication tools. Transcripts from Germany, Ireland, Italy, and the Netherlands underwent qualitative content analysis and thematic synthesis. Six analytical themes emerged across all target groups and countries, indicating the possibility of enhancing dementia care through self-experience. Themes cover the rationale and impact of these practices, required content and strategies, training procedures, target groups, implementation issues, and barriers and facilitators. Tailoring the training and supportive environment are crucial, but ethical and implementation issues must also be considered to ensure effectiveness and integrity. Integration of self-experience practices suggests benefits in skill acquisition, care strategies, and theoretical understanding. Further research is needed to reach an international consensus for self-experience dementia training practices.

Healthcare Professionals’ Perceived Burden Related to Care in the Dying Phase – Results of a Cross-Sectional Explorative Study on General Wards and Intensive Care Units

2025-06-19

Nikolas Oubaid , Sukhvir Kaur , V Milke +7 more | OMEGA - Journal of Death and Dying

Most patients dying in hospitals die outside of specialist palliative care, making healthcare professionals of all disciplines responsible for the care of the dying. This cross-sectional study assessed how burdened … Most patients dying in hospitals die outside of specialist palliative care, making healthcare professionals of all disciplines responsible for the care of the dying. This cross-sectional study assessed how burdened healthcare professionals on non-palliative care hospital wards are when caring for dying patients. Descriptive and inferential statistics (chi 2 and t tests) were used to analyze the data. N = 201 healthcare professionals on ten non-palliative care hospital wards participated in the survey (four general wards, six intensive care units). Intensive care unit staff reported a higher total burden related to care in the dying phase than general ward staff (d = 0.41; p = .005). “High demands of caring for dying patients”, “unexpected death”, and “special relationship with informal caregivers” were the most severe and prevalent burden factors in healthcare professionals. Results show specific burden factors that should be prioritized when implementing interventions to reduce burden in healthcare professionals.

Evaluating outcomes of advance care planning interventions for adults living with advanced illness and people close to them: A systematic meta-review

2025-06-19

Jodie Crooks , Noura Rizk , Charlotte Greene +4 more | Palliative Medicine

Background: Advance care planning enables individuals to define goals and preferences for future medical care. Despite advances in research and the production of tools and methods for advance care planning, … Background: Advance care planning enables individuals to define goals and preferences for future medical care. Despite advances in research and the production of tools and methods for advance care planning, uncertainty remains regarding whether and which interventions support intended outcomes for patients. This lack of clarity is occurring despite high financial investment into advance care planning research through grant funding, relative to other palliative care areas. Aim: To utilise published reviews to explore the efficacy of current advance care planning interventions, including how they are evaluated, and whether they achieve their intended outcomes for adults living with an advanced illness. Design: Meta-review of reviews. Data sources: Five electronic databases (PubMed, CINAHL, EMBASE, Medline and PsychINFO) were searched for reviews published between 2015 and 2025. Quality of reviews was assessed by the AMSTAR-2 tool. Results: Thirty-nine reviews were included. Fifteen reviews evidenced significantly decreased hospital utilisation in line with patient’s preferences following advance care planning. Fourteen reviews evidenced significant increases in patients receiving care consistent with their goals, and 12 evidenced significant increases in patients documenting their preferences. Evidence on the impact of advance care planning on decisional conflict was mixed. Conclusions: This review highlights where advance care planning interventions significantly impact outcomes defining successful advance care planning. The existence of a range of interventions can accommodate preferences of patients or families regarding how to receive and engage with their options. This heterogeneity is, however, a challenge for synthesising research data to understand the impact of interventions and inform practice.

Kompetenciahatárok és döntési helyzetek az élet végén

2025-06-19

Anikó Kussinszky , Péter Stánicz | Deleted Journal

Hiábavaló kezelést nincs értelme nyújtani. De mit is jelent a hiábavalóság, és ki dönthet róla? A hiábavaló kezelésről alkotott eltérő elképzelések gyakran vezetnek a betegek és/vagy családjuk, valamint az egészségügyi … Hiábavaló kezelést nincs értelme nyújtani. De mit is jelent a hiábavalóság, és ki dönthet róla? A hiábavaló kezelésről alkotott eltérő elképzelések gyakran vezetnek a betegek és/vagy családjuk, valamint az egészségügyi ellátók közötti nézeteltérésekhez, amelyek különösen élesek lehetnek életvégi helyzetekben. Egy kezelés hiábavalóságáról való döntés az etikai szempontból legérzékenyebb kérdések közé tartozik. A hiábavaló kezelés fogalmát ugyanis széles körben használják a kezeléskorlátozás indokolására, azaz olyan döntések alapjául szolgál, amelynek folytán egy kezelést el sem kezdenek, vagy beszüntetik a nyújtását. A tanulmány az orvosilag haszontalan kezelés kereteit és a hazai szabályozásával kapcsolatos problémákat térképezi fel, valamennyi szereplő szempontjait kiemelve. Bemutatja továbbá a szabályozás anomáliáit is (normavilágosság, kollízió, orvosszakmai szabályozó eszközök szerepe és határai, kompetenciahatárok stb.). A tanulmány az EJEB gyakorlatát, valamint az igazságosság és sorolás kérdéseit is feldolgozva, nemzetközi jó gyakorlatok számbavételével a közös döntéshozatal intézményét ajánlja előrelépési lehetőségként, kiemelve a hatékony jogorvoslat megteremtésének és szerepének fontosságát az életvégi döntésekben. A tanulmány végül az előzetes rendelkezés és az életvégi tervezés szerepére is kitér, mielőtt a szerzők levonják végső következtetéseiket.

Views and experiences on writing certificates for assisted dying: interviews with Swedish physicians

2025-06-18

Frida Jönsson , Manne Sjöstrand , Ulrik Kihlbom | Frontiers in Psychiatry

Intro The only legal option for Swedish patients who desire assisted dying (AD) is to travel to Switzerland. To access AD there, patients need medical certificates from their physicians. However, … Intro The only legal option for Swedish patients who desire assisted dying (AD) is to travel to Switzerland. To access AD there, patients need medical certificates from their physicians. However, Swedish healthcare law and professional ethical guidelines lack clear directives on how physicians should handle such requests, which may place physicians in perceived ethical and professional dilemmas. How physicians reason about their professional involvement in writing such certificates has previously not been studied in a Swedish context. The aim of this study was to describe and explore physicians’ opinions and reasoning when confronted with requests for AD or requests to enable AD in Switzerland. Material and methods 12 semi-structured interviews with physicians from different specialties (oncology, neurology, palliative care, psychiatry, general practice, internal medicine) were conducted, transcribed, and analyzed using thematic analysis. Results Participants felt it was important to address the reasons why patients wanted to pursue AD, including addressing fears, optimizing care, and existential aspects. Participants felt that they should write certificates to enable AD, citing different reasons. Simultaneously, many participants argued that performing AD in Sweden should not be part of their professional role. Some participants were more positively inclined but were still concerned with perceived obstacles. Conclusion Participants were concerned with the underlying reasons for patients pursuing AD, hoping to address them. Interestingly, although many of the participants expressed skepticism towards AD and its legalization in Sweden, they still supported writing a medical certificate enabling AD in Switzerland.

Satisfaction with Care Received at the End of Life in Portugal: A Systematic Review

2025-06-18

Amélia Ferreira , Alexandra Pereira , Sara Pinto | Nursing Reports

Background: Although there is recent evidence from a range of sources that demonstrates the usefulness of assessing satisfaction with healthcare, there is still a lack of evidence regarding the satisfaction … Background: Although there is recent evidence from a range of sources that demonstrates the usefulness of assessing satisfaction with healthcare, there is still a lack of evidence regarding the satisfaction with healthcare received by adult individuals at the EOL in Portugal. Methods: This systematic review aims to examine and synthesize the evidence published through 2024 regarding satisfaction with care received by adult individuals at the EOL in Portugal. Results: Seven studies were included in this review. Six out of the seven studies were quantitative descriptive cross-sectional studies. The majority of them used family caregivers as the source of information. Most studies had small samples that characterized the satisfaction with care received in a palliative care context in a specific region of the country. Sixteen different variables were studied to understand the factors that influence satisfaction with care. The majority of them were related to the personal characteristics of the patient or the family caregiver. No evidence was found regarding the study of variables related to the patient's trajectory, location of care provision, or place of death. Conclusions: The different instruments used in the data collection in all of the included studies made it difficult to compare the results and draw definite conclusions regarding satisfaction with care received by adult individuals at the EOL in Portugal. Although different levels of satisfaction with the care were found, it can be concluded that the results tend to be positive in the palliative care context.

Serious Illness Conversations in the Emergency Department for Older Adults With Advanced Illnesses

2025-06-18

Kei Ouchi , Susan D. Block , Dorene M. Rentz +7 more | JAMA Network Open

Importance Conversations between seriously ill patients and clinicians about values and goals (ie, serious illness conversations [SICs]) can lead to patient-centered care toward the end of life. However, many patients … Importance Conversations between seriously ill patients and clinicians about values and goals (ie, serious illness conversations [SICs]) can lead to patient-centered care toward the end of life. However, many patients have not had SICs when arriving in the emergency department (ED) and are at risk of receiving undesired care. Objective To determine the effect of an ED-based, multimodal SIC intervention (known as ED GOAL) compared with usual care on patient-reported engagement in advance care planning (ACP) and clinician-documented SICs after leaving the ED. Design, Setting, and Participants This 2-armed, 1:1, parallel-design randomized clinical trial was conducted at 3 participating EDs (2 academic medical centers and 1 community hospital) in Boston, Massachusetts, within a single health system between March 1, 2022, and July 1, 2024, with a follow-up duration of 6 months. Eligible participants were English-speaking adults 50 years or older with serious illnesses, including mild cognitive impairment or mild dementia, along with their caregivers. For patients with moderate to severe dementia, caregivers were the primary participants in the study. Patients with documented goals for medical care or physician orders in the last 3 months in medical records or deemed clinically inappropriate by the treating ED team were excluded. Intervention SIC-trained research nurses conducted (1) a motivational interview about SICs, (2) a structured SIC, and (3) communication priming for the patients and their primary clinicians to reinitiate SICs on a tablet computer in the ED or within 1 week after leaving the ED. Main Outcomes and Measures The primary outcome was a validated survey of patient-reported engagement in ACP at 1 month, with total possible scores ranging from 1 to 5, with higher scores indicating more engagement. Secondary outcomes included clinician documentation of end-of-life values and preferences in the medical record and completed advance directives. Results A total of 141 patients (mean [SD] age, 66.7 [9.2] years; 73 [51.8%] female), predominantly diagnosed with metastatic cancer (85 [60.3%]), were enrolled and randomized to the intervention (n = 70) or usual care (n = 71). At 1 month, no difference was observed in patient-reported engagement in ACP (mean [SD] score, 3.32 [1.28] for control vs 3.37 [1.07] for intervention; maximum possible score, 5.00; P = .58), yet 12 patients in the intervention group (17.1%) discussed care preferences with their physicians compared with 5 (7.0%) control group patients ( P = .07). Medical record documentation of end-of-life values and goals was significantly higher in the intervention group at 3 months (17 [24.3%] vs 7 [9.9%]; P = .03) and 6 months (22 [31.4%] vs 9 [12.7%]; P = .008). Conclusions and Relevance In this randomized clinical trial of seriously ill older adults in the ED, while a nurse-led SIC intervention did not significantly improve patient-reported engagement in ACP, it did increase clinician-documented SICs in the medical records. ED visits may serve as a critical access point to enhance SICs for seriously ill yet clinically stable older adults. Trial Registration ClinicalTrials.gov Identifier: NCT05209880

“There’s just such a mismatch”: a qualitative exploration of health systems and organizational-level barriers to accessing cancer services among people experiencing structural marginalization

2025-06-18

Tara C. Horrill , Jess Crawford , Scott M. Beck +6 more | International Journal for Equity in Health

Abstract Background Within the context of cancer care, access to timely, high-quality care is closely correlated with better health outcomes and quality of life. Yet in Canada, research continues to … Abstract Background Within the context of cancer care, access to timely, high-quality care is closely correlated with better health outcomes and quality of life. Yet in Canada, research continues to show that inequities in access to cancer care persist across the cancer continuum, particularly among people experiencing structural marginalization. Although some Canadian research has explored barriers accessing cancer care, little research has explicitly focused on barriers arising from organizational and health systems contexts. Our objective was to explore barriers to accessing cancer services within the health system and organizations delivering cancer services across the cancer continuum for people experiencing structural marginalization. Methods This study drew on critical ethnographic methods, employing a participatory, integrated knowledge translation approach. Data collection included interviews with health and social service providers ( n = 24) and key informants ( n = 7), interviews and focus groups with individuals with lived experience of significant health and social inequities ( n = 29), and 40 h of observations with service providers working in clinical oncology settings. Guided by social justice, critical and intersectional theoretical perspectives, data analysis followed an interpretive descriptive approach. Results Four interrelated themes were developed through our analysis, with the overarching thread of a ‘mismatch evident throughout: (1) the design of cancer services does not always account for social contexts and structural determinants of health; (2) discourses of operational efficiency are competing with equity-oriented care; (3) the physical spaces of cancer care matter; and (4) experiences of stigma and discrimination are incompatible with accessing cancer care. Our findings suggest that the ways in which cancer services across the continuum are designed, including the types of services available, how care activities are structured, what activities take priority, and how services are experienced, create barriers that particularly impact people experiencing structural marginalization. Conclusions Our findings highlight the mismatches between how cancer services are currently designed and delivered, and the specific needs of people experiencing health and social inequities. These findings also point to organizations delivering cancer services as potential sites for transformation toward more equitable access to cancer care. Equity-oriented healthcare may offer a framework for service design and delivery to improve access to cancer care and experiences of care.

Heterogeneity of professional goals among residents enrolled in a palliative care track: results of a national online survey in France

2025-06-18

François Chaumier , Emmanuel Gyan , Denis Angoulvant +1 more | Medical Education Online

Palliative care (PC) is recognized as a universal right, aimed at improving the quality of life for patients and their families facing life-threatening conditions. Training healthcare professionals, particularly physicians, is … Palliative care (PC) is recognized as a universal right, aimed at improving the quality of life for patients and their families facing life-threatening conditions. Training healthcare professionals, particularly physicians, is crucial for high-quality PC. Currently, France lacks a Palliative Medicine residency or fellowship (PMR-F), offering only a Palliative Care tracks (PCT) for voluntary postgraduate students. The aim of this study was to describe motivations and career plans of students enrolled in the PCT and to identify the proportion of those who would have preferred a PMR-F if it had been available. A national online survey was conducted between April and August 2024 among 128 students enrolled in PCT. A 12-item questionnaire, using a 10-point Likert scale, was designed and pilot-tested by PC educators and former students. The questionnaire was sent to identify their motivations and career plans. The response rate was 76% (97/128). For 76% (74/97) of students, the purpose was to acquire skills complementary to their original specialty. While 48% (47/97) also aimed to gain skills for future specialist PC practice, only 10% (10/97) enrolled due to the lack of a specialized certificate. Career plans varied, with 30% intending to practice in their original discipline and 31% in PC facilities. Finally, 23% of students aiming to work in specialized PC facilities planned to continue their training with a continuing medical education program in PM (7/30). The findings align with the official objectives of a track, emphasizing complementary skills acquisition. Our study reveals the coexistence of a variety of professional goals and projects within the same class of residents, which does not seem relevant for the same training program. It highlights the opportunity for setting up, in addition to PCT, a specialized PM curriculum in France, to better address specialized training needs for future PM experts.

Associated factors of home hospice care utilization by the terminally ill older adults: a mixed-methods study

2025-06-18

Jie Peng , Xiaoling Feng , Xiaoying Cao +7 more | Frontiers in Public Health

Objective Given the discrepancy between the low utilization rate of hospice care services and the high willingness to choose hospice care, this study aims to identify the factors influencing the … Objective Given the discrepancy between the low utilization rate of hospice care services and the high willingness to choose hospice care, this study aims to identify the factors influencing the utilization among older adults. The findings will provide a foundation for interventions designed to enhance the growth of this service. Design A mixed-methods study of convergent parallel designs. Methods In the quantitative research phase, in January 2024, a convenience sampling method was used to recruit 350 terminally ill older individuals from three hospitals and three communities in Guangxi, China. Face-to-face surveys were conducted using a general information questionnaire, a Home Hospice Care Service Needs Questionnaire, and a Home Hospice Care Service Knowledge, Attitude, and Practice Scale. In the qualitative research phase, semi-structured interviews were conducted with 16 terminally ill older individuals to explore the barriers and facilitators to the utilization of home hospice care services. Results A total of 332 (94.86%) older individuals completed the survey, and 45 (13.55%) accepted home hospice care. The identified barriers to utilization included high physiological, psychological, and spiritual needs, as well as families’ feelings of guilt. The facilitators included being of advanced age (≥80 years), having chronic diseases, not needing a caregiver, having high social needs and knowledge scores, and perceiving a significant economic burden. Conclusion The utilization of home hospice care services by older adults is lower, which is influenced by both subjective and objective factors. The novel identification of ‘families’ guilty’ as a barrier underscores the need for targeted interventions that address emotional and psychological barriers within families. Policymakers should consider these factors when developing strategies to promote the development of home hospice care for older adults, ensuring that interventions are culturally sensitive and economically feasible.

Advance care planning in dementia

2025-06-18

David J. Oliver , Simone Veronese , Ida J. Korfage +1 more | The Lancet Neurology