End-of-Life Care: Lessons from Other Nations

Abstract

Palliative care and hospice services have evolved across the globe in different contexts and in different ways, although many of the challenges faced are similar. Comparison between countries helps to identify the best solutions for individual patients and their families, who have complex needs and problems. This paper describes the globally shared challenges and beginnings in hospice and palliative care. It reviews evolution of services and approaches. It compares the models of hospice and palliative care in the United States and the United Kingdom, where pioneer hospices were developed through the work of Dame Cicely Saunders, and then seeks to highlight ways to learn from the different approaches to address common questions. Several research recommendations result from this review. In many countries the research agenda in palliative and end-of-life care must move from describing need (where there are ample studies) to understanding how and determining whether services and interventions work, for whom, and when. Studies should consider the whole trajectory of illness, particularly in slowly progressive or relapsing conditions (including neurological conditions). Future studies should work toward the use of a similar set of core outcome measures, as well as take advantage of the opportunity to undertake "natural experiments" by comparing and contrasting care systems developed in different contexts around the world.

Palliative Care Consultation Service and Palliative Care Unit: Why Do We Need Both?

“…PC infrastructure has developed differently around the globe [5]. Whereas for outpatients, PC home care teams, telephone consultations, and outpatient clinics have been implemented and evaluated [5], this publication takes a specific look at the PC infrastructure established to deliver PC for inpatients.…”

“…Reasons for the team's perception that severely ill PC patients might be cared for more adequately in a PCU than a non-PC ward might be (a) the comparably lower time and staff resources of non-PC wards and (b) the superiority of the medical and communicative PC expertise in PC wards [5].…”

Dying with Dementia: What We Know after More than a Decade of Research

“…* findings [57,137]. These comparisons are especially important for European and other countries since so far most research has been US-based.…”

“…Shortness of breath presented in 12% to 79% of terminal cancer patients [56]. In general, about two of three patients need relief from these symptoms at the end of life [57], an approach that is appropriate for dementia patients as well.…”

Evaluations of end of life with dementia by families in Dutch and U.S. nursing homes

“…Our findings can inform future comparisons between ongoing and new prospective studies such as those performed in the U.S.A., the Netherlands, Israel, and Belgium (van der Steen et al, 2007a;2008b), employing similar designs and time frames. Combined studies will allow researchers to examine system-level factors affecting end of life as in a "natural experiment," and, by comparing outcomes directly, to identify opportunities for improving care (Higginson, 2005;van der Steen et al, 2008a). This will ultimately inform intervention studies in each setting, where the EOLD scales may be used as an outcome.…”