The fifth edition of the Oxford Textbook of Palliative Medicine is dedicated to the memory of Prof Geoffrey Hanks, one of three founding editors of the textbook, who died in June 2013. With a legacy spanning almost four decades as a clinician, researcher, teacher, and editor, Geoffrey was a man of great compassion and wisdom. While we are greatly saddened by his death, we are inspired by his legacy.
The two decades since the first edition of this textbook have witnessed truly remarkable growth in palliative care. Such growth is challenging to master, and brings both uncertainties and optimism about the future. In this three-part series of articles, we’ll take a look at some of the complex and challenging issues of continuity, development, and evolution in the field of palliative care.
The maturing of palliative medicine as a profession has been accompanied by the ongoing development of palliative medicine education and educational resources all over the world.
Globally, the principles and precepts of palliative care are finding a new home in medical education. Palliative care is an excellent framework for teaching the bio-psycho-social model of illness and the inter-professional approach to complex health care problems. Curricula have been developed and published in many countries, universities and individual faculties; moreover, there are a plethora of teaching models and aids that have been published and disseminated.
Yet, much more needs to be done to introduce palliative care into the curriculum of every specialty that provides care to populations with serious or life-threatening illness. In all of these specialties, there have been important developments, but change around the world is inconsistent at best, and at worst, disappointing. Despite evidence of progress, the development of a high level of skill and understanding of palliative medicine remains a goal that has yet to be achieved.
Palliative medicine is now a recognized medical specialty or subspecialty in over 20 countries, and in others application for specialty or subspecialty accreditation are underway or pending. There is however no consensus as to how to best train palliative medicine specialists. The content and duration of advanced training programmes vary greatly around the globe, from one year in the United States, to four in the UK, and three in Australia. Given that the level of training not only affects competence and service delivery, but also influences the role and well-being of specialist clinicians working in the field, the issue of adequate training is salient. How best to adequately equip specialist palliative care clinicians remains an open question worthy of further evaluation and research.
Preclinical, translational, and clinical research are all badly needed to expand the boundaries of knowledge and provide an evidence base for patient care. This truism is valid for the medical endeavor in general, but is particularly relevant to palliative medicine, in which evidence-base practice is still relatively underdeveloped. The proliferation of research relevant to the care of the incurably ill has been a critical part of the maturation of palliative medicine. Research findings have sharpened our understanding of the mechanisms of symptoms we seek to relieve, helped define the limits of old approaches, and have uncovered new approaches to the problems that have hitherto been refractory to older treatments.
By its nature, research in palliative medicine is very broad in its scope. Palliative care needs research in communication, service delivery, quality, and ethics, as much as it needs biomedical and psychological research. Rigorous observational studies and well-crafted clinical trials are both essential at this point. The care of the incurably ill and their families is a “complex system” challenge, requiring multiple inputs, resource allocation, pharmacotherapeutic and psychological skills, and social understanding. All of these factors are increasingly represented in the evolving research culture that we encourage and cultivate. Some believe that palliative care is unlike other disciplines in that it is not possible to inform practice with rigorous trials. We do not believe this. We must learn from our colleagues in other disciplines and ensure that, whenever possible, we run multi-site studies.
The past two decades have seen a flourishing of palliative medicine services in different settings worldwide. This has been well documented and monitored by the International Observatory of End of Life Care Project. There are now a great many models of palliative medicine service delivery: inpatient and home-based hospices, hospital consultation services, acute palliative care wards, and day hospitals, ambulatory clinics, and mobile clinics. Although the underlying principles and philosophy are consistent, the spectrum of observed problems may be profoundly different depending on the care settings.
This is particularly true with the increasing movement towards “upstream palliative medicine”, in which palliative medicine is being delivered at an earlier stage of the trajectory of illness. The issues confronted by clinicians working in early stage palliative medicine units, such as those in acute palliative medicine units, are often quite different from those confronted by clinicians who are providing immediate end-of-life care. The goals of care are different with a greater emphasis on optimizing function and, often, life prolongation (even in the face of progressive incurable disease). In such cases, the duration of care will be prolonged and the fluctuating status of illness (with treatment-induced remissions and relapses) may involve rapidly changing care needs, problem lists, and priorities.
The quality of care that is offered through these services must be measured and responses to variations in the quality of care or its outcomes actively addressed. As in all areas of clinical care, we must each be striving to improve the care offered. In palliative medicine, as in any area of clinical practice, we can and do cause morbidity and, at times, premature mortality. To ensure the ongoing development of the specialty, such outcomes must be acknowledged and critically addressed.
Read part one of this three-part series, “Facing the challenges of palliative care: continuity”.