Barriers and facilitators to care for the terminally ill

Christopher A Klinger, PhD, postdoctoral fellow at the University of Ottawa, Department of Medicine, Division of Palliative Care and chair of the (Canadian) National Initiative for the Care of the Elderly’s (NICE) End-of-Life Issues Theme Team, explains the background to his PhD-thesis research on different approaches to care for the terminally ill, an article derived from which has been selected as ‘Editor’s choice’ in the February issue of Palliative Medicine.

Christopher A Klinger

Christopher A Klinger

A German national and international graduate student in both Canada and the United States, my research interest was drawn early on toward different approaches to care for the terminally ill. The seminal book ‘Providing a Palliative Care Service’, edited by Bosanquet and Salisbury (1999), and an internship at the National Hospice and Palliative Care Organization, Inc.  in the United States further highlighted the need for cross-country comparisons as – despite different national strategies or frameworks for care – many terminally ill patients still do not die at their preferred location or under the form of care desired.

The establishment of the Collaborative Program in Aging, Palliative and Supportive Care across the Life Course at the University of Toronto gave me the opportunity to link up with internationally renowned experts in health policy (Dr Raisa Deber), public health (Dr David Zakus) and palliative care (Dr Doris Howell)  as members of the Thesis Committee, and to use the English End of Life Care Strategy as a window of opportunity for case study research in this regard.

Setting out from a ‘most similar – most different’ perspective, we triangulated the evidence from a scoping review of the literature, document analyses and semi-structured key informant interviews/site visits concerning Canada, England, Germany and the United States toward barriers (eg, legislative, regulatory and financial) and facilitators (eg, advance care planning, population aging, and standards of practice and guidelines to hospice and palliative care) to best practice service provision. Strikingly, while similar with regard to leading causes of death, patient needs and potential avenues to care, the different models of service provision employed in the four countries lead to varying outcomes with regard to access, utilisation, etc. – reaffirming Bosanquet’s notion (1999) toward the potential for accelerated learning through international contact. The ability to implement best practice approaches also depends on how health care systems are organised – and includes monitoring and fine-tuning.

As shared from preliminary results at the 7th World Research Congress of the European Association for Palliative Care in Trondheim, Norway (Klinger, Howell, Zakus, et al., 2012), scheduling, transcribing and follow up concerning the 77 key informant interviews and site visits on two continents posed considerable logistical challenges alongside data coding, warehousing and triangulation. Lessons learned in this regard include:

  • Patience, patience, patience (!);
  • Solid recruitment, coding and data warehousing/triangulation strategies;
  • Monitoring of inter-coder reliability and a mechanism for consensus building, and
  • The ability to incorporate emerging themes.

Please share your expertise with us…
With the case study methodology gaining greater importance toward the investigation of phenomena in their real-world context (eg, Walshe, Caress, Chew-Graham, et al., 2004; Payne, Field, Rolls, et al., 2007), further expertise and a community of practice need to be built. Please share your expertise and feel free to indicate your interest in establishing enhanced connections by leaving a reply below.

The research team, once again, thanks all key informants and the site visit sites. The full thesis, including further coding information and statistics, is available from the website of The University of Toronto’s T-Space Research Repository.

Bosanquet N & Salisbury C. (Eds.). (1999). Providing A Palliative Care Service: Towards An Evidence Base. Oxford, UK: Oxford University Press.
Klinger C, Howell D, Zakus D, et al. Different approaches to care at the end-of-life: a transcontinental study utilizing key informant interviews (abstract). Palliat Med 2012; 26: 399.
Payne S, Field D, Rolls L, et al. Case study research methods in end-of-life care: reflections on three studies. J Adv Nurs 2007; 58: 236–245.
Walshe C, Caress A, Chew-Graham C, et al. Case studies: a research strategy appropriate for palliative care? Palliat Med 2004; 18: 677–684. 

Read the full article, selected as 'Editor's choice', in Palliative Medicine

Read the full article, selected as ‘Editor’s choice’, in Palliative Medicine

Download a free copy of the full article published in Palliative Medicine…
This post relates to a longer article, ‘Barriers and facilitators to care for the terminally ill: a cross-country case comparison study of Canada, England, Germany and the United States’ by Raisa B Deber et al, Palliat Med February 2014 vol. 28 no. 2, 111-120. Published online before print June 25, 2013, doi: 10.1177/0269216313493342. EAPC members and registered users of the EAPC website can download a free copy of this article and other ‘Editor’s choice’ papers from the EAPC website. (Just follow the instructions in the top right-hand corner of EAPC home page to register or login, and scroll down to download the article). Click here to view other EAPC-originated papers on the EAPC website.

Palliative care in critical care settings
A forthcoming Special Edition of Palliative Medicine is focused on developing our knowledge of the care of patients nearing the end of their lives in intensive and critical care settings. For more information and guidance please read the journal’s Author GuidelinesDeadline for submissions is 30 April 2014.  For further information please contact the Editorial Office:

This entry was posted in EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice, RESEARCH and tagged . Bookmark the permalink.

One Response to Barriers and facilitators to care for the terminally ill

  1. Pingback: Barriers and facilitators to care for the terminally ill | EAPC Blog | All Things Palliative - Article Feed

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