Topic
End-of-life care
About: End-of-life care is a research topic. Over the lifetime, 9216 publications have been published within this topic receiving 189433 citations. The topic is also known as: EoLC & terminal care.
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TL;DR: Advance care planning improves end of life care and patient and family satisfaction and reduces stress, anxiety, and depression in surviving relatives.
Abstract: Objective To investigate the impact of advance care planning on end of life care in elderly patients. Design Prospective randomised controlled trial. Setting Single centre study in a university hospital in Melbourne, Australia. Participants 309 legally competent medical inpatients aged 80 or more and followed for six months or until death. Interventions 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. Main outcome measures 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. Results 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 Conclusions Advance care planning improves end of life care and patient and family satisfaction and reduces stress, anxiety, and depression in surviving relatives. Trial registration Australian New Zealand clinical trials registry ACTRN12608000539336.
1,930 citations
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TL;DR: Many people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support, and being treated with respect, according to this evaluation of the US dying experience at home and in institutional settings.
Abstract: ContextOver 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.ObjectiveTo evaluate the US dying experience at home and in institutional settings.Design, Setting, and ParticipantsMortality 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.Main Outcome MeasuresPatient- 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.ResultsFor 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).ConclusionsMany 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.
1,442 citations
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TL;DR: 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.
Abstract: ContextQuality 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.ObjectiveTo identify and describe elements of quality end-of-life
care from the patient's perspective.DesignQualitative study using in-depth, open-ended, face-to-face
interviews and content analysis.SettingToronto, Ontario.ParticipantsA 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).Outcome MeasuresParticipants' views on end-of-life issues.ResultsParticipants 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.ConclusionThese domains, which characterize patients'
perspectives on end-of-life care, can serve as focal points for
improving the quality of end-of-life care.
1,278 citations
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TL;DR: This study describes the attributes of a good death, as understood by various participants in end-of-life care, and compared the perspectives of different groups of persons who had experienced death in their personal or professional lives.
Abstract: 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.
1,082 citations
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TL;DR: There is evidence thatvance care planning positively impacts the quality of end-of-life care and complex advance care planning interventions may be more effective in meeting patients’ preferences than written documents alone.
Abstract: 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.
1,007 citations