Proxy perspectives regarding end‐of‐life care for persons with cancer

Abstract

BACKGROUNDEach year, greater than a half million people die of cancer in the U.S. Despite progress in increasing access to palliative oncology services, end‐of‐life care still needs improvement. Measuring the quality of the end‐of‐life experience is difficult because of patient debility and reduced consciousness as death approaches. Family proxies have been proposed as valuable informants regarding the quality of end‐of‐life care. This article describes family proxy perspectives concerning care at the end of life in patients who died of advanced cancer.METHODSIn the context of a novel outpatient palliative care demonstration project, 125 family proxy respondents completed a structured survey by telephone 3 months to 6 months after the patient's death from breast, lung, or gastrointestinal cancer. Four key quality of care indicators were measured: decision‐making and physician communication, location of death, hospice involvement, and end‐of‐life symptoms.RESULTSProxies reported that 78% to 81% of patients completed at least 1 form of advance directive and approximately half of them were helpful in guiding care. Communication with physicians regarding end‐of‐life treatment wishes occurred in 67% of cases, but only 57% of the patients actually made a plan with their physician to ensure that their wishes were followed. The majority of patients died in their location of choice, most often at home, and greater than half had hospice involvement for an average of 41.8 days before death. During the last week of life, the majority of patients experienced troublesome physical and emotional symptoms.CONCLUSIONSMeasurement of proxy perspectives is feasible as an indicator of the quality of end‐of‐life care, and the results of the current study provide actionable data for areas of improvement in palliative oncology care. Cancer 2008. © 2008 American Cancer Society.

Determinants of Preference for Home Death Among Terminally Ill Patients With Cancer in Taiwan

“…Independent variables were selected using factors shown to influence the preferred place of death for terminally ill patients with cancer (Bakitas et al, 2008;Gomes & Higginson, 2008).…”

“…The preferred place of death is determined by complex relationships between multiple factors, broadly including individual characteristics (e.g., educational level; Choi et al, 2005), personal attitudes (e.g., knowledge about their prognosis; Aabom, Kragstrup, Vondeling, Bakketeig, & Stovring, 2005), disease processes (e.g., diagnosis, functional status; Bakitas et al, 2008), social factors (e.g., family caregivers' knowledge of the patient's place-of-death preferences; Brazil, Howell, Bedard, Krueger, & Heidebrecht, 2005), and healthcare system structures (Nakamura, Kuzuya, Funaki, Matsui, & Ishiguro, 2010;Stajduhar, Allan, Cohen, & Heyland, 2008). However, current knowledge about the factors correlated with the actual place of death of patients with cancer (AlonsoBabarro et al, 2011;Murray, Fiset, Young, & Kryworuchko, 2009) is more extensive than that about the factors associated with their preferred place of death (Gomes et al, 2012).…”

Palliative Medicine and Decision Science: The Critical Need for a Shared Agenda To Foster Informed Patient Choice in Serious Illness

“…Research suggests that patients who complete advance directives are indeed more likely to receive care that is consistent with those preferences. 50 A recent strategy in the implementation of advance directives is the Physician (Clinician) Orders for LifeSustaining Treatment (POLST) paradigm program that is designed to improve the portability of advance directives across settings. 51,52 The forms create an opportunity for patients to identify their wishes for ''comfort measures''; limited medical treatment; full medical treatment; and whether they wish to receive specific treatments such as antibiotics and medically administered nutrition and hydration, and by what means and for what length of time.…”

Translating and Testing the ENABLE: CHF-PC Concurrent Palliative Care Model for Older Adults with Heart Failure and Their Family Caregivers

“…1), we embarked on translating our successful early, concurrent PC model, ENABLE (Educate, Nurture, Advise, Before Life Ends) [32][33][34] for the HF population. ENABLE is a phone-and manual-based intervention conducted by advance practice PC nurse coaches with patients and their primary family caregivers.…”