Research in palliative care
Max Watson, Stephen Ward, Nandini Vallath, Jo Wells, and Rachel Campbell
(This is an edited extract from the full chapter ‘Research in palliative care’ from the Oxford Handbook of Palliative Care Third Edition (OUP, 2019)
The origins of palliative care research in the modern UK hospice movement date from the founding of St Christopher’s Hospice in 1967. Dame Cicely Saunders advocated scientific observation and systematic research as an essential component of the specialty.
To ensure that patients are managed in the most appropriate way, a solid body of knowledge must be developed. However, this can only be done on the basis of good research, which some would say is an absolute moral imperative.
In the palliative care setting, the effectiveness of many treatments has not yet been proven through rigorous clinical trials. The use of treatments is often based on evidence from less robust evidence with different patient populations, anecdotal evidence, and doctor preference. However, it is not practicable or ethical to remove all treatments from use in clinical practice because they have yet to be tested in clinical trials. The practice of many other specialties would be equally decimated by the application of such an approach.
In recent times, research has been expanding in the area of palliative medicine with good quality, well-designed trials being carried out and published. This is a huge step forward and will ultimately improve patient care in the future through the use of evidence-based practice being integrated into day-to-day clinical work.
The overarching ethical dilemma is in balancing the needs of the individual patient you are treating, who may be approaching the end of life, with those of future populations for whom we should endeavour to improve our evidence base to optimize their care. Without striving to develop a body of evidence for the treatments we are using in clinical practice, we risk doing our future patients a disservice.
The Declaration of Helsinki was drawn up by the World Medical Association in 1964 in response to the need for a code of ethics on human experimentation. This is particularly pertinent in the field of palliative care where the core practice is looking after the dying and there is a clear need for guidance for the physician caught in the conflict between patients’ best interests and the necessity to advance knowledge for society as a whole.
Some people feel that palliative care research in dying patients is not appropriate—an affront to dignity and an expression of disrespect for the emotional and physical state of people who are terminally ill. Others feel that precious time—which is limited by disease and growing physical incapacity—should not be taken from patients or their families by conducting ‘research’, particularly when patients may be emotionally vulnerable and may feel easily coerced into studies in order to maintain the level of care that they need from staff.
Research has shown, however, that patients are often keen to participate even when it is clear that such research will have no immediate benefit for them. They may not share the concerns of others about the difficulties and hazards of research. However, if they are not given the opportunity to decide for themselves about whether they wish to participate in research because of the concerns of well-meaning others, an important opportunity for both patient autonomy and research will be lost.
Thus the methodological, ethical, and practical difficulties encountered in conducting palliative care studies need to be looked at clearly, and strategies devised which are sensitive both to the needs of this particular group of patients as well as to the needs of similar patients in the future in terms of having access to improved care.
Max Watson, Director Project ECHO Hospice UK, London; Consultant in in Palliative Medicine, Western Trust, Enniskillen; Visiting Professor, University of Ulster, Belfast, UK
Stephen Ward, Teacher Practitioner Pharmacist, Belfast Health and Social Care Trust, Belfast, Northern Ireland
Nandini Vallath, Academic Consultant, Palliative Care Training Program Coordinator for India, Indo-American Cancer Association, Houston, USA
Jo Wells, Nurse Consultant (Triage), Southern Adelaide Palliative Service, Australia
Rachel Campbell, ADEPT Clinical Leadership Fellow and Speciality Trainee in Palliative Medicine, Northern Ireland Medical and Dental Training Agency, Northern Ireland, UK
1 White C, Hardy J (2008) Gatekeeping from palliative care research trials. Progress in Palliative Care, 16(4): 167–71.