Tracking progress in Palliative Care: developments and contributions past, present and future

Currently in its 27th Volume, Progress in Palliative Care has been a growing source of scholarly and practice-oriented literature for multidisciplinary teams over nearly three decades now. As the journal approaches its 30th year—under the leadership of a new editorial team—it is timely not only to acknowledge the loyal readership who continue to support Progress, but also to reflect on the important contributions made to the journal, which include the global dissemination of research and practice developments in the field of palliative care. Now is also a time for us personally to consider what our own future contributions might be, vis-à-vis progress in palliative care.

As the incoming Editor-in-Chief, its only fitting to acknowledge the sterling contributions made by those who have served previously. From humble beginnings in 1993, the path for progress has been paved by luminaries from the field, each leading with distinction. Sam Ahmedzai,^1,2 Ian Maddocks,^3–5 and David Currow^6,7 worked tirelessly to establish and consolidate the journal as a unique publication of relevance and import to clinicians and researchers alike. More recently, Mellar Davis⁸ and Margaret O’Connor (Co-Editor) made an invaluable contribution to the continued success of the journal. Progress in Palliative Care owes its current standing to their vision and combined editorial leadership over time. As a well-cited and leading multidisciplinary palliative care journal, listed on the Emerging Sources Citation Index (produced by Clarivate Analytics - formerly Thomson Reuters), it will continue to grow from strength to strength into the future.

It is certainly an interesting period in which to be discussing international developments in palliative care. As a specialty area of professional practice, palliative care has taken tremendous strides in its evolution from the socially informed hospice movement largely pioneered by Dame Cicely Saunders. Advances have been made in broadening the reach and focus of palliative care services to patients and families living with non-cancer diagnoses. In many countries, quality frameworks are available and evidence relating to clinical outcomes of palliative care is increasingly embedded within practice. Advance health directives and conversations about advance care planning are more common now when compared to times past. Progress can be seen in the early referral and involvement of specialist palliative care teams along trajectories of chronic illness where complex and integrated care can better promote quality of life. At the same time, capacity-building efforts to support the provision of palliative and end-of-life care in generalist settings are gaining momentum.

Yet, despite this progress, significant disparities remain a concern. Whilst fundamentally a human right, palliative care in developing countries is compromised by lack of access to opioid analgesia for pain control.⁹ This is coupled by a variety of policy, education, social, cultural, financial and implementation barriers associated with palliative care development. For instance, limited training and awareness of palliative care among health professionals represents a major obstacle to improved access to palliative care. Perhaps more alarming is the stark reality that, according to the Global Atlas of Palliative Care at the End of Life,¹⁰ the need for palliative care far overshadows the number and capacity of health services providing palliative care around the world. The majority of people needing palliative care do not actually receive it. This deficit is further compounded by the increasing demand and complexity of care associated with an ageing population of so-called baby boomers.

Adding to the clinical access-human rights milieu, are ethical and legislative debates around or implementation of legal access to assisted suicide or euthanasia (also referred to as voluntary assisted dying, medical assistance in dying or physician-assisted dying, depending on jurisdiction), particularly in the United Kingdom (UK) and several States across Australia. While there is potential for division both between and within public and professional opinions, it is essential that all voices are included and heard in the debate; not only the loudest or most powerful. This includes those without a voice. The collective voice of palliative care must also be heard to ensure that its rightful place remains enshrined as an essential component of healthcare. As has been established in other countries, palliative care still plays a vital role in promoting quality of life and its advancement therefore should not suffer due to the implementation of assisted suicide or euthanasia. Careful stewardship is necessary if problems are to be avoided.

Even defining palliative care, so it seems, can be problematic. Take, for example, the International Association for Hospice and Palliative Care’s (IAHPC) consensus-based definition of palliative care, recently developed for potential adoption by the World Health Organization. Based upon the recommendation of the Lancet Commission on Global Access to Palliative Care and Pain Relief,¹¹ IAHPC’s objective was to provide a definition focused on relief of suffering that is timely and applicable to all patients regardless of the diagnosis, prognosis, geographic location, point of care and income level:

Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers.¹²

Although this definition (abbreviated above) was developed internationally via consensus involving 450 palliative care experts and workers, it has been met with a mixed reception. Over 1,000 individuals and 176 representatives of organizations have endorsed it; however, key international bodies such as the European Association of Palliative Care and the Worldwide Hospice Palliative Care Alliance have not—with both citing concern about several issues relating to nomenclature, ambiguity, and omission of direct acknowledgement of informal caregiving roles and public health approaches such as compassionate communities. Surely, the aforementioned problems will remain so, if the collective voice of palliative care cannot find accord and articulate what exactly it is to provide and receive palliative care. Clearly, many challenges lay ahead for those seeking to advance the field of palliative care, and there is much yet to be accomplished. To disrupt the status quo, meaningful partnerships together with spirited advocacy and consideration of new approaches and innovative models of care will be vital, in developing and developed countries.

Recently in The Conversation, we were warned that UK hospices are at risk of collapse due to funding constraints - and a case was made inter alia for ‘radical action’ towards more sustainable approaches to end-of-life care. The main approach proffered was one of fostering compassionate communities. As a public health approach,¹³ compassionate communities should be understood within the broader context of Public Health Palliative Care, which traces its origins to the Ottawa Charter for Health Promotion and is further reflected in emerging initiatives such as the Taipei Declaration for Health Promoting Palliative Care. In beginning to conceptualise linkages between palliative care practice and compassionate communities, the expression of compassion—based on common humanity—represents a clear constant worthy of empirical investigation.

While explorations of compassion and self-compassion in palliative care professionals are beginning to feature in the literature,^14,15 we must remember that compassion involves total immersion in the human condition. Vulnerability, exposure to suffering, and compassionate care are common threads to our human experience, shared between palliative care professionals and broader compassionate communities. Indeed, the healing expression of compassion is everyone’s business. In this light, the notion of compassionate communities may not seem so much like radical action; in reality compassionate communities share their expertise alongside that of trained palliative care professionals who must, in turn, include and support rather than exclude and disempower them. Outside of lobbying councils or governments at the policy level, there is a fundamental contribution to be made by palliative care practitioners within a compassionate community. The task at hand, then, is to reflect and explore ways in which we might best develop and refine this contribution through current clinical practice and future research.

Your future contributions to progress in palliative care are always welcome as practitioners, researchers, reviewers, or engaged citizens advocating for end-of-life concerns. Whether publishing your research to disseminate new knowledge, providing a scholarly review of the literature to summarise and highlight gaps in current knowledge, or critically discussing new models of care and proposed innovations in clinical practice—your work will receive the benefit of peer review and upon publication, will reach a wide audience through the journal’s growing international readership. In recent years there has been a proliferation of palliative care journals, but few parallel the holistic focus and multidisciplinary perspectives of Progress. The journal is well-placed to advance its positioning and reach. To this end, you can now follow the journal through its social media presence on Twitter (@ProgPalliatCare) and further disseminate your papers when tweeted via this platform. While you will notice enhancements such as this over time, the journal will maintain the same format familiar to its loyal readership. Given the rapidly changing landscape of health and palliative care, the bibliography and special issues themed to developing and topical areas will remain a feature. Together with Claire Johnson, as Co-Editor, I look forward to working with you and the Editorial Board as colleagues in advancing progress in palliative care.

ORCID

Jason Mills http://orcid.org/0000-0002-5584-5225