Palliative care for people with advanced illness

“Palliative Care is the health system platform for all countries” – Dr Simon Sutcliffe, IAPCON, 2105

There is widespread recognition of the importance of palliative care, with major advances in policy and advocacy in recent years (1, 2). One of the most significant advances was achieved at the World Health Assembly in 2014. The Assembly voted in support of strengthening palliative care as a component of integrated treatment throughout the life course, in recognition of the essential nature of palliative care in health care (1). They recommended that evidence-based, cost effective and equitable palliative care services be available within the continuum of care, across all levels.

Implementation of these advocacy advances now rests squarely on the shoulders of the international palliative care community working in partnership with key cancer and other organisations.
There is no time for complacency or perspectives limited to national borders, as we cannot avoid the evidence of unrelieved, human suffering which is presented to us through the social and traditional media and other forms of information sharing.

For example, it is estimated that 42 % of the world’s countries have no delivery system for palliative care services and that integration of palliative care is achieved in only 20 of the world’s 234 (8.5%) countries (3). In addition or perhaps, as a result, 80% of people are unable to access treatments for pain relief (4) and only 7.5% of the world’s population live in countries considered to have adequate opioid consumption (3). The needs of children in particular, are often neglected (3, 5) but there are many other groups which remain hidden from view, such as people with dementia, the homeless and those living in remote and rural areas. The distribution of access is skewed toward economically more developed countries (6). When poverty is combined with political instability, war, populations on the move and humanitarian crises, introducing this essential component of health care requires strategic, creative, coordinated, policy and education-driven efforts on a scale as yet far from realised.

At the IAPC conference, Hyderabad, in February 2015, I listened to a plenary by Professor Simon Sutcliffe in which he urged the palliative care community present to change our conversation about palliative care and revitalise our efforts to drive development. He urged alignment with the efforts to achieve global cancer control, rather than distancing and engaging in a polarised or competing discourse, the either – or discourse between these two aspects of cancer care. He challenged us to recognise that the drivers of global cancer control -burden, mortality, morbidity, disability – also drive the need for palliative care, especially in countries where resources are least and cancer burden is greatest. We do not need to make a business case for palliative care so much as a moral and ethical case for humane, expert care of those suffering at the end of life, who have a right to expect relief of pain, distress, support for their caregivers and whole person care. Such relief is likely to result in an increased capacity for engagement with family and community, renewed independence and improvement in societal, not just personal, quality of life.

We need to be open to new collaborations and new thinking to address current global inequality.

An important change needed to improve palliative care for patients with advanced illness is finding ways to achieve better integration of palliative care into cancer or other speciality areas of health care. This change involves developing and testing new models of palliative care practice which foster integration (7, 8). There are encouraging reports of new models of palliative care service delivery within renal, respiratory, cardiac and intensive care medicine, to mention only a few (9-11). Features of integrated models include increasing palliative care services in the ambulatory care setting in acute medical centres (12), participation in specialist multidisciplinary team case conferencing, mutual sharing of expertise between palliative care and the respective other specialty area, research collaborations, and training opportunities across palliative and acute care specialities for trainees.

Looking at integration of palliative care into cancer care in particular, there has been a growing acceptance of the essential nature of palliative care in cancer care with key organisations such as ASCO, NICE, and ESMO promoting this for several years now (13-15). There is recognition of the range of benefits this brings, including better symptom control and quality of life (16), more caregiver satisfaction, fewer ICU deaths and fewer hospitalisations (17), and longer survival in metastatic lung cancer (18). Yet despite this, progress is slow and increased financial support for the development of palliative care, even in Europe and the USA, is lacking (19, 20).

In the recently published 2015 Quality of Death index (21), it is apparent that advances can be made despite scarce resources, when the triad of policy, education and access to essential medications is activated (22). In Panama, policy changes at primary care level have driven integration, in Mongolia, the focus on education by leading champions and the development of hospice facilities have been key and in Uganda, a significant increase in access to opioids has improved the quality of dying.

Identifying and supporting champions on the ground is critical to development. Finding ways to effectively grow that support in order to reduce the burden of unrelieved suffering related to health deterioration, is a critical challenge for all of us who enjoy a high level of health care development. We look forward to exciting developments ahead and challenge the next generation of palliative care specialists to use their innovativeness and energy to apply existing knowledge in new and creative ways.

– Assoc. Prof. Odette Spruyt

References:
1. Strengthening of palliative care as a component of integrated treatment throughout the life course, (2014).
2. ESMO. ESMO Press Release: ESMO, UICC, NCD Alliance and Other Endorsing Partners Issue Palliative Care Statement at WHA 2014 [cited 2015 12.3.15]. Available from: http://www.esmo.org/Press-Office/Press-Releases/ESMO-UICC-NCD-Alliance-and-other-endorsing-partners-issue-joint-statement-on-palliative-care-at-67th-World-Health-Assembly.
3. WHPCA. World hospice and palliative care day 10 October 2015 Hidden lives, hidden patients 2015 [cited 2015 October].
4. WHO Briefing Note. “Access to Controlled Medications Programme,” 2009. Available from: http://www.who.int/medicines/areas/quality_safety/ACMP_BrNoteGenrl_EN_Feb09.pdf
5. Wolfe J. Recognizing a global need for high quality pediatric palliative care. Pediatr Blood Cancer. 2011.
6. Lynch T, Clark D, Connor SR. Mapping levels of palliative care development: a global update 2011. 2011.
7. Hui D, Bruera E. Models of integration of oncology and palliative care. Annals of palliative medicine. 2015;4(3):89-98.
8. Zhi WI, Smith TJ. Early integration of palliative care into oncology: evidence, challenges and barriers. Annals of palliative medicine. 2015;4(3):122-31.
9. O’Mahony S, McHenry J, Blank AE, Snow D, Eti Karakas S, Santoro G, et al. Preliminary report of the integration of a palliative care team into an intensive care unit. Palliat Med. 2010;24(2):154-65.
10. Cohen LM, Moss AH, Weisbord SD, Germain M. Renal palliative care. Journal of Palliative Medicine. 2006;9(4):977-92.
11. Dalgaard KM, Bergenholtz H, Nielsen ME, Timm H. Early integration of palliative care in hospitals: A systematic review on methods, barriers, and outcome. Palliative & Supportive Care. 2014;12(06):495-513.
12. Corbett C, Johnstone M, Trauer J, Spruyt O. Palliative Care and Hematological Malignancies: Increased Referrals at a Comprehensive Cancer Centre Journal of Palliative Medicine. 2013;16( 5): 537-41.
13. National Institute for Health and Clinical Excellence. End of life care for adults quality standard 2012 [updated This page was last updated: 22 December 2011; cited November 2011]. Available from: http://www.nice.org.uk/guidance/qualitystandards/endoflifecare/home.jsp?domedia=1&mid=E9C7F836-19B9-E0B5-D4B49B5A7149F081.
14. Ferris FD, Bruera E, Cherny N, Cummings C, Currow D, Dudgeon D, et al. Palliative cancer care a decade later: accomplishments, the need, next steps — from the American Society of Clinical Oncology. J Clin Oncol. 2009;27(18):3052-8.
15. Cherny N, Catane R, Schrijvers D, Kloke M, Strasser F. European Society for Medical Oncology (ESMO) Program for the integration of oncology and Palliative Care: a 5-year review of the Designated Centers’ incentive program. Ann Oncol. 2010;21(2):362-9.
16. Zimmermann C, Swami N, Krzyzanowska M, Hannon B, Leighl N, Oza A, et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. The Lancet. 2014;383(9930):1721-30.
17. Higginson IJ, Evans CJ. What is the evidence that palliative care teams improve outcomes for cancer patients and their families? Cancer J. 2010;16(5):423-35.
18. Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer. New England Journal of Medicine. 2010;363(8):733-42.
19. Hui D, Elsayem A, De La Cruz M, et al. Availability and integration of palliative care at US cancer centers. JAMA. 2010;303(11):1054-61.
20. M.P. D, Strasser F, Cherny N. How well is palliative care integrated into cancer care? A MASCC, ESMO, and EAPC Project. Support Care Cancer. 2015.
21. Economist Intelligence Unit. The 2015 Quality of Death Index. Ranking palliative care across the world. 2015.
22. World Health Organization. Cancer pain relief: with a guide to opioid availability, 2nd ed. World Health Organization, 1996.