Gaps in Hospice and Palliative Care Research: A Scoping Review of the North American Literature

Abstract

Background. The demand for hospice and palliative care is growing as a result of the increase of an aging population, which is most prominent in North America. Despite the importance of the topic and an increase in hospice and palliative care utilization, there still are gaps in research and evidence within the field. Aim. To determine what gaps currently exist in hospice and palliative/end-of-life care research within the context of a North American setting to ensure that future directions are grounded in appropriate evidence. Methods. Using Arksey and O’Malley’s scoping review framework, six peer-reviewed, and four grey electronic literature databases in healthcare and the social sciences were searched in mid-2019. 111 full-text articles were retrieved, with 25 articles and reports meeting the inclusion criteria. Major themes were identified through thematic context analysis: (1) clinical, (2) system access to care, (3) research methodology, and (4) caregiving-related research gaps. Results. Findings include strategies for engaging stakeholder organizations and funding agencies, implications for other stakeholder groups such as clinicians and researchers, and highlight implications for policy (e.g., national framework discussion) and practice (e.g., healthcare provider education and training and public awareness). Conclusion. Reviewing and addressing targeted research gaps is essential to inform future directions in Canada and beyond.

The Medical Orders for Scope of Treatment (MOST) form completion: a retrospective study

“…There are plenty implications for future research as we previously discussed. MOST-specific studies are needed focusing on the effectiveness and efficiency of MOSTlike forms in facilitating discussions and GoC concordance [4,[32][33][34][35][36][37] and holistic system of ACP processes [4].…”

Combining realist evaluation and transformative evaluation to advance research in palliative care: The case of end of life companionship

“…The value of palliative care is well established, however, multiple research challenges are acknowledged. 1 Palliative care is a complex system which is emergent, unpredictable, and prone to adaptations. 2,3 For example, in the case of volunteering, role ambiguity, hesitancy about volunteering, and the partial appreciation of spiritual support in palliative care, all influence outcomes.…”

“…10 Traditional ethical boards also require procedures which risk removing agency from key groups, and subsequently results may not represent real life. 1,11 Therefore, research is needed that empowers patients, is low burden, and inclusive. This is also likely to be more acceptable to clinicians, thus increasing the likelihood of more complete datasets.…”

“…12 Working with patients to establish priorities will also advance the measurement of outcomes. 1 Illness-centric measures are well established compared to concepts like autonomy, human connection, acceptance, comfort, and dignity which are often used in practice, but have underdeveloped metrics 13,14 Research must be able to capture diverse and holistic outcomes in naturalistic settings to accurately appraise palliative care. 15,16 In addition, there is a lack of research which explores the practicalities of palliative care and little is known about why outcomes are variable, 17 and the lived experiences of those using services.…”

‘When a patient chooses to die at home, that's what they want… comfort, home’: Brilliance in community‐based palliative care nursing

“…6 These barriers are associated with personal, 7 social, 8 and economic implications. 9 Palliative care, therefore, needs to be recognised as an approach that involves different sectors 10 to address issues about access and, relatedly, the negative views about palliative care, which are evident in research [11][12][13][14][15][16] and the media. 17 This literature depicts a somewhat bleak portrayal of palliative care.…”