Perspectives: Thoughts on palliative care: critical debates for global challenges

At the time of writing, I have just completed four years as the President of the European Association for Palliative Care (EAPC). Since its foundation in 1988, the EAPC has played a significant role in determining the global messages which aim to place palliative care at the centre of healthcare. Having worked as a palliative care nurse for almost 30 years, I have always chosen to hold dual academic–clinical roles where possible, which proved very useful in establishing the credibility and contribution of nursing in a burgeoning medical field. No criticism of the benefit of medicine to the management of serious health-related suffering but I think an important starting point for this review of palliative care development is to remember that the founder of the modern hospice movement, Dame Cicely Saunders, was herself originally a nurse and her first paper on the benefit of hospice and the need to manage cancer pain better was published in the Nursing Times (reproduced in Saunders and Clark, 2002). The fact that her own view that palliative care was ‘often just good nursing care’ (Saunders and Clark, 2002) places the profession as a critical element for the delivery of optimal palliative care. The opening of St Christopher’s Hospice in Sydenham, London in 1967 was a catalyst for what has become a global movement in the care of people living with life-limiting and life-threatening disease. Historically, it was a courageous decision since its very existence was a direct criticism of a health service that failed to care for the suffering of its patients. At this time, morphine was considered a dangerous and addictive medication, thus avoided, and so the need for the relief of pain and other symptoms was always the ‘raison d’être’ of the work of the hospice. Moreover, the opening of the first home-care service under the direction of Dr Mary Baines in 1969 and an education centre in 1973 signalled important principles for a growing clinical discipline; people should be enabled to live and die in their own home if that was their choice and professionals needed education on how to care well for them. Both have remained key factors in the expansion of hospice care and its later North American evolution as palliative care.

In leading a palliative care organisation responsible for 59 membership associations across 33 countries, I have seen how the ideals of the St Christopher’s hospice model have remained important in the establishment of palliative care within respective national health sectors. Many early pioneers across the world came to St Christopher’s to learn what of the UK model could be transplanted into their culture and practice and although the practice of palliative care may differ, the vision and wisdom of Cicely Saunders in establishing what palliative care should be remains a constant.

Hospice – a vision for the future

However, in contemporary terms, the hospice model has had to accept the need for radical revision. The reasons for this are varied: challenges to funding, a changing picture of dying beyond cancer including frailty and multi-morbidity, technological advancement, significant professional recruitment challenges particularly within nursing and a change in expectation of patients and families that has changed significantly since the early days of hospice. Heather Richardson and Shaun O’Leary, joint-CEO of St Christopher’s Hospice, have proffered these challenges in a recent presentation at the 2018 Hospice UK National Conference, now accessible through YouTube (Richardson and O’Leary, 2018). Respecting the challenges, the core elements of good care in chronic and life-limiting illness which hospice always stood for, such as challenging mainstream thinking, providing care that is both individual and relational and engagement with the community as a critical actor for change must be embedded in the delivery of any new models and approaches to care planning. If the difference or added value of hospice to the wider healthcare sector is not clear, then there is a risk that hospice as it is currently known will not survive.

Palliative care – an expanding discipline

The recently published third edition of the EAPC Atlas of Palliative Care in Europe 2019 (Arias-Casais et al., 2019) provides a comprehensive infographic text at country level of the current status of palliative care, as well as 51 country reports defining the evidence for national policies, service provision, both specialist and generalist, academic development and morphine consumption per capita. The Atlas (of which versions are also available for Latin America, Africa and Arab Nations) contends that although there is clear evidence of palliative care expansion across many European countries with stronger legislation and policies for integration and partnership, gaps remain between East and West in terms of access to services, essential medication and education and training. A promising outcome of the report is the rise of children’s palliative care services, with 38 of the 51 countries indicating the establishment of new clinical teams. However, the level of academic development in the discipline remains poor, particularly in the number of professorial appointments in both medicine and nursing, barely in double figures. Given the academic leadership role needed to instil and promote quality research, engagement with the university sector to create academic palliative care positions is essential. The findings of the Atlas also echo those of an earlier Council of Europe report (Mullen, 2018), which argues that despite international calls for palliative care to be recognised as a human right, many people in Europe still lack access to services and supports to relieve unnecessary suffering. Moreover, the report makes specific mention of the role of the informal caregiver since, in many instances, care is given by family in the absence of sufficient community-based clinical services and of the value of respite care with family-support packages. Both the Atlas and the Council of Europe report, as well as important position papers such as that of the Lancet Commission on palliative care and pain relief (Knaul et al., 2018), make the case that palliative care is part of a growing socio-political debate on death in society which exists in a neoliberal system where the ‘commodification’ or buying and selling of care leads to inequality and injustice. Those considered most vulnerable are least likely to receive the best care possible and this can only impact negatively on a clinical practice based on a human response to relief of suffering.

Palliative care as a public health issue

An important advancement for palliative care was the 2014 World Health Authority resolution 67.19 ‘Strengthening of palliative care as a component of comprehensive care throughout the life course’, which included palliative care as a central element to universal health coverage. The report acknowledged the inequity of access to and experience of palliative care. Set against a background of an ageing global population and the need to address the rise in mortality from chronic disease as well as cancer, the impact of the report remains somewhat negligible in real terms. The Lancet Commission report (Knaul et al., 2018) into palliative care and pain relief still identifies a considerable differential between the affluent West and low- and middle-income countries (LMICs) in terms of access to pain relieving medication, notably morphine. Over-restrictive legislation in some countries, often based on misplaced opioidphobia, means that ‘50% of the global population (3·6 billion people who reside in the poorest countries) receive less than 1% of the morphine distributed worldwide’ (p.2). For agencies like EAPC, and their international counterparts such as the International Association for Hospice and Palliative Care (IAHPC) and World Hospice Palliative Care Alliance, this challenge can best be met through a joint advocacy approach to create a single voice which supports the initiatives of the World Health Assembly (WHA) and the Lancet Commission to provide equitable and just solutions for the poorest nations.

Allied to the public health approach has been a focus towards primary care. Led by Professor Scott Murray, University of Edinburgh and Chair of the International Primary Palliative Care Network (Murray and Mitchell, 2018), this work brings the generalist–specialist debate to the fore. The need to promote palliative care within all settings and for all diseases has been a fundamental call to reframe palliative care from the UK specialist model to one which establishes the critical place of community, especially the General Practitioner and community nurse as leaders in the delivery of care. A recently published set of supportive palliative care indicators to help community practitioners identify palliative care patients and a toolkit for national palliative care development in the community provide substantial resources to the generalist practitioner.

Serious health-related suffering – a matter of definition

In fostering the public health debate, the policy and practice documents cited have focused thinking towards the need for a clearer definition of palliative care which can respond to all health-related suffering. The need for this is evident in a recent paper (Sleeman et al., 2019a) providing the first global assessment of serious health-related suffering (SHRS). The paper proposes that by 2060, just under 50% of all deaths will be due to SRHS each year, of which 83% will occur in LMICs. Concomitantly, the need for palliative care will increase by 87%. This requires a shift in global thinking to realise that palliative care is not only a practical and cost-effective solution but a moral imperative for the future. The current World Health Organisation (2002) definition of palliative care (itself a revision of an earlier 1990 version) has been criticised for being too Western in scope and failing to encompass the reality of need globally, particularly in the LMICs noted in the work of Knaul et al. (2018) and Sleeman et al. (2019a). The IAHPC have proposed a revised definition which goes some way to addressing the context of global burden, although a lack of specificity has meant that some international groups, including EAPC, have not accepted the definition as is, but seek to engage with the wider community to find a common language upon which to agree. The risk is that we become lost in the debate and those in greatest need will suffer because of a lack of engagement and consensus. For the future, resolution on the definition and role of palliative care in the relief of SHRS is something which must be addressed, and urgently.

Palliative care research – a case of gender inequality

Since inequality has figured largely in the discourse surrounding palliative care, an earlier paper by Sleeman et al. (2019b) highlights the specific challenge of gender equality faced by women working in academic palliative care. Based on a quantitative analysis of gender balance at EAPC Conferences from 2012 to 2016, the study demonstrated that although palliative care is a predominantly female workforce, only six of the invited 23 plenary speakers over this four-year period were women. No women were invited to give plenary talks in 2014 and 2016. The study also demonstrated a gender differential between themed sessions (usually men as invited speakers) and free communication sessions (usually women, selected anonymously by abstract). Notwithstanding earlier comments about the need to increase the visibility of palliative care in academia, the need to provide realistic strategies to avoid both conscious and unconscious gender bias to promote academic excellence is essential.

Palliative care – a nursing perspective

Given earlier comments about the place of nursing and gender inequality within the discipline of palliative care and the need for established education and training, there remains a considerable amount of work needed to support nurses to develop credible academic and clinical roles to demonstrate their clinical expertise. If I were writing this 10 years ago, then the issue would have been a lack of educational opportunity for nurses, particularly at Masters and PhD level. At that time, hardly any countries in Europe beyond the UK and Ireland offered PhD programmes for nurses. That has changed and although gaps remain, there has been a slow if steady increase in access to higher education across Europe with excellent examples in Spain and Italy. However, at the beginning of this paper, I made the point that holding academic–clinical roles is important to embed the potential of nurses as leaders in the field. I believe that, at least in the mid-term, efforts should be made to develop such roles and to avoid separation of the academic (theory) from the clinical (practice). It does not seem to be so complex for our medical colleagues, who often hold joint appointments, but seems to be an ongoing problem in nursing. However, as the generalist–specialist debate continues, it is incumbent on nurses working in specialist palliative care to be explicit about their specific contribution since, as a commissioner of services, I may choose to allocate my resources to a wider generalist nursing workforce who can, ostensibly, offer the same thing.

Conclusion

The diversity of palliative care means that many aspects noted here warrant a deeper and more critical debate to understand what is needed to address the challenges for the future. That said, palliative care will, without doubt, be a key player in global health. To be that, it needs some urgent self-reflection to be clear on what role it will play and how it can be enacted to best effect.

Biography

Philip J Larkin (PhD, MSc, BSc (Hons), RN, RCN, RNT) is currently Professor of Palliative Care Nursing at the University of Lausanne. Philip has worked in palliative care for 30 years as a clinician, academic and researcher. He is past President of the European Association of Palliative Care (EAPC).