End of life care and the approach of death.
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101 to 125 of 969Advance care planning and end-of-life decision making in dialysis: a randomized controlled trial targeting patients and their surrogates.
Background: Few trials have examined long-term outcomes of advance care planning (ACP) interventions. We examined the efficacy of an ACP intervention on preparation for end-of-life decision making for dialysis patients and surrogates and for surrogates' bereavement outcomes.
Study design: A randomized trial compared an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) to usual care alone, with blinded outcome assessments.
Setting & participants: 420 participants (210 dyads of prevalent dialysis patients and their surrogates) from 20 dialysis centers.
Intervention: Every dyad received usual care. Those randomly assigned to SPIRIT had an in-depth ACP discussion at the center and a follow-up session at home 2 weeks later.
Outcomes & measurements:
Primary outcomes: preparation for end-of-life decision making, assessed for 12 months, included dyad congrue…
matched on Terminal Care (mesh), Advance Care Planning (mesh), end of life (text)
Effect of a disease-specific advance care planning intervention on end-of-life care.
Objectives: To compare patient preferences for end-of-life care with care received at the end of life.
Design: A randomized controlled trial was conducted with individuals with congestive heart failure or end-stage renal disease and their surrogates who were randomized to receive patient-centered advance care planning (PC-ACP) or usual care.
Setting: Two centers in Wisconsin with associated clinics and dialysis units.
Participants: Of the 313 individuals and their surrogates who completed entry data, 110 died.
Intervention: During PC-ACP, the trained facilitator assessed individual and surrogate understanding of and experiences with the illness, provided information about disease-specific treatment options and their benefits and burden, assisted in documentation of treatment preferences, and assisted the surrogates in understanding the patient's preferences and the surrogate's role.
Meas…
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Palliative assessment and advance care planning in severe dementia: an exploratory randomized controlled trial of a complex intervention.
Patients with advanced dementia often receive poor end-of-life care. We aimed to design and pilot a palliative care and advance care plan (ACP) intervention. Patients had undergone emergency hospital admission and had severe dementia. The intervention consisted of a palliative care patient assessment which informed an ACP discussion with the carer, who was offered the opportunity to write an ACP for the person with dementia. Carer-patient dyads were randomized to 'usual care' or the intervention. Carer-related outcome measures included the Kessler Distress Scale, Decision Satisfaction Inventory, Client Satisfaction Questionnaire and the Euroqol-5D, measured at baseline, six weeks, six months and three months after bereavement. The Satisfaction with End of Life Care in Dementia Scale was completed if the patient died. The 32 patient participants were physically frail and in the advanced s…
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Efficacy of short-term life-review interviews on the spiritual well-being of terminally ill cancer patients.
Context: There is a little information about effective psychotherapies to enhance the spiritual well-being of terminally ill cancer patients.
Objectives: The primary aim of the study was to examine the efficacy of a one-week Short-Term Life Review for the enhancement of spiritual well-being, using a randomized controlled trial. The secondary aim was to assess the effect of this therapy on anxiety and depression, suffering, and elements of a good death.
Methods: The subjects were 68 terminally ill cancer patients randomly allocated to a Short-Term Life-Review interview group or a control group. The patients completed questionnaires pre- and post-treatment, including the meaning of life domain from the Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp) scale, the Hospital Anxiety and Depression Scale (HADS), a numeric scale for psychological suffering, and items from the…
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Palliative care for Latino patients and their families: whenever we prayed, she wept.
Latinos account for 15% of the US population, a proportion projected to grow to 30% by the year 2050. Although there is tremendous diversity within this community, commonalities of language, beliefs, attitudes, and behaviors unite Latinos, making them more similar than different. Differences by national origin, although important, are attenuated when immigrants come to the United States, dominated by an English-language, Anglo-centric culture. For non-Latino and non-Spanish-speaking clinicians, communication barriers and cultural misunderstandings can impede the care of dying Latino patients and their families. We present the case of a young, pregnant, Spanish-speaking woman from Central America diagnosed with a fatal leukemia. As illustrated by this case, Latino immigrants face a number of external challenges to optimal end-of-life care: (1) geographic distance as well as political and …
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A controlled trial of a short course to improve residents' communication with patients at the end of life.
Purpose: High-quality palliative care requires physicians who communicate effectively, yet many do not receive adequate training. Leading efforts to demonstrate the effectiveness of such training have involved time-intensive programs that included primarily attending physicians, which have been conducted outside of the United States. The goal was to evaluate the effect of a short course to improve residents' communication skills delivering bad news and eliciting patients' preferences for end-of-life care.
Method: This prospective trial enrolled internal medicine residents at Duke University Medical Center from 1999 to 2001. The course consisted of small-group teaching with lecture, discussion, and role-play. The outcome measure was observed communication skills delivering bad news and eliciting patients' preferences for end-of-life treatment, assessed via audio-recorded standardized pati…
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Hospital-based bereavement services following the death of a child: a mixed study review.
Background: There has been a breadth of research on the grief experience of parents following the death of a child. However, the role and impact of hospital-based bereaved services remain unclear.
Aim: To identify services offered to bereaved families in perinatal, neonatal, and pediatric hospital settings and summarize the psychosocial impact of these services and published recommendations for best practice hospital-based bereavement care.
Design: Systematic review of qualitative, quantitative, and mixed method studies guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklist and methodological quality appraised in accordance with the Mixed Method Appraisal Tool.
Data sources: MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health, and PsychINFO were searched to find studies describing hospital-based bereavement services/interventions for parents…
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You JJ, Downar J, Fowler RA, Lamontagne F, Ma IW, Jayaraman D, Kryworuchko J, Strachan PH, Ilan R, Nijjar AP, Neary J, Shik J, Brazil K, Patel A, Wiebe K, Albert M, Palepu A, Nouvet E, des Ordons AR, Sharma N, Abdul-Razzak A, Jiang X, Day A, Heyland DK, Canadian Researchers at the End of Life Network (2015)cohort or longitudinalMEDLINE-indexed journal, not yet read by usJAMA internal medicine283 citations Barriers to goals of care discussions with seriously ill hospitalized patients and their families: a multicenter survey of clinicians.
Importance: Seriously ill hospitalized patients have identified communication and decision making about goals of care as high priorities for quality improvement in end-of-life care. Interventions to improve care are more likely to succeed if tailored to existing barriers.
Objective: To determine, from the perspective of hospital-based clinicians, (1) barriers impeding communication and decision making about goals of care with seriously ill hospitalized patients and their families and (2) their own willingness and the acceptability for other clinicians to engage in this process.
Design, setting, and participants: Multicenter survey of medical teaching units of nurses, internal medicine residents, and staff physicians from participating units at 13 university-based hospitals from 5 Canadian provinces.
Main outcomes and measures: Importance of 21 barriers to goals of care discussions rated …
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Balboni T, Balboni M, Paulk ME, Phelps A, Wright A, Peteet J, Block S, Lathan C, Vanderweele T, Prigerson H (2011)cohort or longitudinalMEDLINE-indexed journal, not yet read by usCancer179 citations Support of cancer patients' spiritual needs and associations with medical care costs at the end of life.
Background: Although spiritual care is associated with less aggressive medical care at the end of life (EOL), it remains infrequent. It is unclear if the omission of spiritual care impacts EOL costs.
Methods: A prospective, multisite study of 339 advanced cancer patients accrued subjects from September 2002 to August 2007 from an outpatient setting and followed them until death. Spiritual care was measured by patients' reports that the health care team supported their religious/spiritual needs. EOL costs in the last week were compared among patients reporting that their spiritual needs were inadequately supported versus those who reported that their needs were well supported. Analyses were adjusted for confounders (eg, EOL discussions).
Results: Patients reporting that their religious/spiritual needs were inadequately supported by clinic staff were less likely to receive a week or more o…
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Availability and use of palliative care and end-of-life services for pediatric oncology patients.
Purpose: Palliative care prevents or relieves the symptoms caused by life-threatening medical conditions. Previous surveys have shown both underuse and lack of availability of these services for children with cancer throughout North America. We sought to investigate the current practices and resources surrounding palliative and end-of-life care among participating institutions of the Children's Oncology Group (COG).
Methods: A survey regarding practices and resources was developed by the COG palliative care subcommittee and was sent to all 232 institutions to complete for the calendar year 2005.
Results: The survey was completed by 81% of the institutions. Per institution, there were a mean of 64.6 newly diagnosed patients and 17.7 patients experiencing relapse. A palliative care team was available in 58% of institutions, a pain service in 90%, a hospice in 60%, a psychosocial support te…
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End-of-life care for the critically ill: A national intensive care unit survey.
Objective: One in five Americans dies following treatment in an intensive care unit (ICU), and evidence indicates the need to improve end-of-life care for ICU patients. We conducted this study to elicit the views and experiences of ICU directors regarding barriers to optimal end-of-life care and to identify the type, availability, and perceived benefit of specific strategies that may improve this care.
Design: Self-administered mail survey.
Setting: Six hundred intensive care units.
Participants: A random, nationally representative sample of nursing and physician directors of 600 adult ICUs in the United States.
Interventions: Mail survey.
Measurements and main results: We asked participants about barriers to end-of-life care (1 = huge to 5 = not at all a barrier), perceived benefit of strategies to improve end-of-life care, and availability of these strategies. From 468 ICUs (78.0% of s…
matched on Palliative Care (mesh), Terminal Care (mesh), end of life (text)
Palliative Care Interventions for Patients with Heart Failure: A Systematic Review and Meta-Analysis.
Objective: To systematically characterize interventions and effectiveness of palliative care for advanced heart failure (HF) patients.
Background: Patients with advanced heart failure experience a high burden of distressing symptoms and diminished quality of life. Palliative care expertise with symptom management and healthcare decision-making benefits HF patients.
Methods: A systematic PubMed search was conducted from inception to June 2016 for studies of palliative care interventions for HF patients. Studies of humans with a HF diagnosis who underwent a palliative care intervention were included. Data were extracted on study design, participant characteristics, intervention components, and in three groups of outcomes: patient-centered outcomes, quality-of-death outcomes, and resource utilization. Study characteristics were examined to determine if meta-analysis was possible.
Results: T…
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Palliative care considerations for the older adults with HIV/AIDS: a clinical practice review.
Human immunodeficiency virus (HIV) has historically been viewed as a terminal condition affecting younger populations, however, with advancements in antiretroviral therapy (ART) and better healthcare provisions, people with HIV are now living longer than ever before. This shift has highlighted the need to readdress the end-of-life care needs of patients aging with HIV. People aging with HIV face a double burden. Aging itself comes with an array of health challenges, including cognitive decline, frailty, and increased susceptibility to chronic illnesses. Despite effective management with ART, HIV is associated with ongoing inflammation, and may accelerate aging processes, increasing the risk of certain cancers and comorbidities, as well as an increased risk of cardiovascular disease. The stigma surrounding HIV, though diminished over the years, still lingers. People living with HIV have e…
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Downar J (2018)reviewMEDLINE-indexed journal, not yet read by usJournal of palliative medicine16 citations Resources for Educating, Training, and Mentoring All Physicians Providing Palliative Care.
This article presents a rapid review of the published literature and available resources for educating Canadian physicians to provide palliative and end-of-life care. Several key messages emerge from the review. First, there are many palliative care educational resources already available for Canadian physicians. Second, the many palliative care education resources are often not used in physician training. Third, we know that some palliative care educational interventions are inexpensive and scalable, while others are costly and time-consuming; we know very little about which palliative care educational interventions impact physician behavior and patient care. Fourth, two palliative care competency areas in particular can be readily taught: symptom management and communication skill (e.g., breaking bad news and advance care planning). Fifth, palliative care educational interventions are …
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A consensus review on the development of palliative care for patients with chronic and progressive neurological disease.
Background and purpose: The European Association of Palliative Care Taskforce, in collaboration with the Scientific Panel on Palliative Care in Neurology of the European Federation of Neurological Societies (now the European Academy of Neurology), aimed to undertake a review of the literature to establish an evidence-based consensus for palliative and end of life care for patients with progressive neurological disease, and their families.
Methods: A search of the literature yielded 942 articles on this area. These were reviewed by two investigators to determine the main areas and the subsections. A draft list of papers supporting the evidence for each area was circulated to the other authors in an iterative process leading to the agreed recommendations.
Results: Overall there is limited evidence to support the recommendations but there is increasing evidence that palliative care and a mu…
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Hui D, Bruera E (2015)reviewMEDLINE-indexed journal, not yet read by usAnnals of palliative medicine110 citations Models of integration of oncology and palliative care.
Objective: Palliative care aims to improve cancer patients' quality of life through expert symptom management, psychosocial and spiritual care, patient-clinician communication, facilitation of complex decision making, and end-of-life care planning. Over the past few years, there has been increasing interest and evidence to support integration of oncology and palliative care. However, it remains unclear how best to promote integration. The goal of this review is to examine contemporary conceptual models and clinical approaches to integrate oncology and palliative care.
Methods: Narrative review.
Results: Conceptual models are useful to help stakeholders understand the rationale for integration, to compare the risks and benefits among different practices, and to define a vision towards integration. We will review four major conceptual models of integration, including (I) the time-based mod…
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Kavalieratos D, Corbelli J, Zhang D, Dionne-Odom JN, Ernecoff NC, Hanmer J, Hoydich ZP, Ikejiani DZ, Klein-Fedyshin M, Zimmermann C, Morton SC, Arnold RM, Heller L, Schenker Y (2016)meta-analysisMEDLINE-indexed journal, not yet read by usJAMA799 citations Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta-analysis.
Importance: The use of palliative care programs and the number of trials assessing their effectiveness have increased.
Objective: 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.
Data sources: MEDLINE, EMBASE, CINAHL, and Cochrane CENTRAL to July 2016.
Study selection: Randomized clinical trials of palliative care interventions in adults with life-limiting illness.
Data extraction and synthesis: 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]; mini…
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Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, Mitchell SL, Jackson VA, Block SD, Maciejewski PK, Prigerson HG (2008)MEDLINE-indexed journal, not yet read by usJAMA1,978 citations Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment.
Context: 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.
Objective: To determine whether end-of-life discussions with physicians are associated with fewer aggressive interventions.
Design, setting, and participants: 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.
Main outcome measures: Aggressive medical care (eg, ventilation, resuscitation) and hospice in the final week of life. Secondary outcomes included patients'…
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Differences in Physicians' Verbal and Nonverbal Communication With Black and White Patients at the End of Life.
Context: Black patients are more likely than white patients to die in the intensive care unit with life-sustaining treatments. Differences in patient- and/or surrogate-provider communication may contribute to this phenomenon.
Objectives: To test whether hospital-based physicians use different verbal and/or nonverbal communication with black and white simulated patients and their surrogates.
Methods: We conducted a randomized factorial trial of the relationship between patient race and physician communication using high-fidelity simulation. Using a combination of probabilistic and convenience sampling, we recruited 33 hospital-based physicians in western Pennsylvania who completed two encounters with prognostically similar, critically and terminally ill black and white elders with identical treatment preferences. We then conducted detailed content analysis of audio and video recordings of…
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Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer: results of a randomized study of early palliative care.
Purpose: Understanding of prognosis among terminally ill patients impacts medical decision making. The aims of this study were to explore perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer (NSCLC) and to examine the effect of early palliative care on these views over time.
Patients and methods: Patients with newly diagnosed metastatic NSCLC were randomly assigned to receive either early palliative care integrated with standard oncology care or standard oncology care alone. Participants completed baseline and longitudinal assessments of their perceptions of prognosis and the goals of cancer therapy over a 6-month period.
Results: We enrolled 151 participants on the study. Despite having terminal cancer, one third of patients (46 of 145 patients) reported that their cancer was curable at baseline, and a majority (86 of 124 patients) endorse…
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Communication about serious illness care goals: a review and synthesis of best practices.
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…
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Advance care planning in COPD.
The review aims to discuss current concepts in advance care planning (ACP) for patients with COPD, and to provide a narrative review of recent trends in ACP and end-of-life care for patients with COPD. ACP, which involves patient-clinician communication about end-of-life care, can improve outcomes for patients and their families, and may be especially relevant for patients with COPD. Effective patient-clinician communication is needed to inform and prepare patients about their diagnosis, treatment, prognosis and what dying might be like. It is important for clinicians to understand patients' values and preferences for life-sustaining treatments as well for their site of terminal care. Unfortunately, discussions about ACP and end-of-life care in current practice are scarce, and their quality is often poor. ACP can improve outcomes for patients and their relatives. The challenge remains in…
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Part 2: Home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998-2008).
Family caregivers are crucial for supporting home death. We reviewed published qualitative research on home-based family caregiving at end of life (1998-2008), synthesizing key findings and identifying gaps where additional research is needed. Multiple databases were searched and abstracts reviewed for a focus on family caregiving and palliative care; full articles were reviewed to extract data for this review. In total, 105 articles were included. Findings are presented in the following areas: the caregiving experience and contextual features; supporting family caregivers at end of life; caregiving roles and decision-making; and rewards, meaning and coping. We noted a lack of definitional clarity; a reliance on interview methods and descriptive, thematic analyses, and a relative lack of diversity of patient conditions. Research needs are identified in several areas, including the bereav…
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Chochinov HM (2006)reviewMEDLINE-indexed journal, not yet read by usCA: a cancer journal for clinicians176 citations Dying, dignity, and new horizons in palliative end-of-life care.
Palliative care practitioners are now better able than ever before to ameliorate end-of-life symptom distress. What remains less developed, however, is the knowledge base and skill set necessary to recognize, assess, and compassionately address the psychosocial, existential, and spiritual aspects of the patient's dying experience. This review provides an overview of these areas, focusing primarily on empirical data that has examined these issues. A brief overview of psychiatric challenges in end-of-life care is complemented with a list of resources for readers wishing to explore this area more extensively. The experience of spiritual or existential suffering toward the end of life is explored, with an examination of the conceptual correlates of suffering. These correlates include: hopelessness, burden to others, loss of sense of dignity, and desire for death or loss of will to live. An e…
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Breitbart W, Pessin H, Rosenfeld B, Applebaum AJ, Lichtenthal WG, Li Y, Saracino RM, Marziliano AM, Masterson M, Tobias K, Fenn N (2018)randomised controlled trialMEDLINE-indexed journal, not yet read by usCancer231 citations Individual meaning-centered psychotherapy for the treatment of psychological and existential distress: A randomized controlled trial in patients with advanced cancer.
Background: Patients with advanced cancer have high rates of psychological distress, including depression, anxiety, and spiritual despair. This study examined the effectiveness of individual meaning-centered psychotherapy (IMCP) in comparison with supportive psychotherapy (SP) and enhanced usual care (EUC) in improving spiritual well-being and quality of life and reducing psychological distress in patients with advanced cancer.
Methods: Patients (n = 321) were randomly assigned to IMCP (n = 109), SP (n = 108), or EUC (n = 104). Assessments were conducted at 4 time points: before intervention, midtreatment (4 weeks), 8 weeks after treatment, and 16 weeks after treatment.
Results: Significant treatment effects (small to medium in magnitude) were observed for IMCP, in comparison with EUC, for 5 of 7 outcome variables (quality of life, sense of meaning, spiritual well-being, anxiety, and des…
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