Why do palliative care services grow so slowly?

Prof Wim JA van den Heuvel, Chairman of PALIAŢIA

There is no doubt – based on research – about the benefits of palliative care: palliative care improves the quality of life of patients and their families. Nevertheless, worldwide only about 14% of people who need palliative care receive it, as stated by (World Health Organisation) WHO (1). These are figures from 2012. What about the situation in Europe nowadays? In this issue of PALIATIA, two articles indicates that the availability of palliative care services are still ‘problematic’. In Romania, palliative care services started 28 years ago, but today only 12% of the need is covered (2). In Albania, palliative care services are developing slowly, despite the effort and enthusiasm of Albanian health care workers (3).

Why is the development and availability of palliative care, despite scientific evidence, problematic? WHO lists various barriers (1):

a. lack of awareness among policy-makers, health professionals and the public about what palliative care is, and the benefits it can offer patients and health systems;

b. cultural and social barriers, such as beliefs about death and dying;

c. misconceptions about palliative care, such as that it is only for patients with cancer, or for the last weeks of life;

d. misconceptions that improving access to opioid analgesia will lead to increased substance abuse.

These barriers sounds very reasonable and in line with the experiences of many pioneers in palliative care. Some experts see a solution to overcome these barriers in improving the quality of palliative care, especially the education and training in palliative care. A recent study by EAPC recommends to improve multidisciplinary postgraduate palliative care education and therefore presents a new and comprehensive list of learning goals (4).

As known, in 2014, the World Health Assembly Resolution on Palliative Care called for all countries to incorporate palliative care provision into their health care systems. Such incorporation would stimulate the access to palliative care for all patients in need. Till now, this is still an intention, also in European countries. Maybe the concept of palliative care has to be reconsidered?

Two years ago Hawley (5) questioned why such ‘incorporation’ did not happen. His analysis is worthwhile to think over. As is written in all handbooks:  palliative care is intended to prevent and relieve suffering. Prolongation of life is not the objective nor the reason to start palliative care, neither does palliative care intend to shorten life. Palliative care is not identical with end-of-life care. Palliative care should be provided alongside treatment of a diagnosed disease; it should be part of curative care.

It is part of part of curative care. Palliative care focuses of prevention of complications and management of symptoms (including pain, not only pain). Communication with the patient, goal setting, shared decision making and advanced care planning are essential conditions for palliative care as it is (or should be) for curative care. All patients, who receive such ‘integrated care’ will be better off! Accordingly to Hawley, ‘there is an overwhelming body of evidence that for patients with serious illness, receipt of palliative care is better in all respects than no access and that early access is better than late’. He states that simultaneous disease-targeting and palliative approaches are necessary and of equal value.

Palliative care should not be used – any longer as Hawley states – ‘as a euphemism for dying’.

Integrated care (curative and palliative treatment) may be ambulatory or institutional. Such integrated services are highly needed.

See PDF

        Bibliografie/References

  1. News-room. [Available at https: //www.who.int/news-room/fact-sheets/detail/palliative-care]. Accessed 27 Dec 2019.
  2. Dumitresu M. Îngrijirile paliative în România anului 2019. Paliatia 2020; 13(1) :15-20.
  3. Laska I. Integration of Palliative care in undergraduate and postgraduate training programs in Albania. Paliatia 2020 ; 13(1) :21-23.
  4. Paal P, Brandstötter C, Lorenzl S, Larkin P, Elsner F. Postgraduate palliative care education for all healthcare providers in Europe: Results from an EAPC survey. Palliative and Supportive Care 2019; 17: 495–506. https://doi.org/10.1017/
  5. Hawley P. Barriers to access to palliative care. Palliative Care: Research and Treatment 2017;1–6. DOI: 10.1177/1178224216688887