Abstract

It is never an easy task to settle on just five key practices that need to be changed at a systems level or at the level of individual clinicians. Were there to be a poll of readers, there would be a plethora of topics, often passionately held, that each of us would seek to champion for this list—pet likes or dislikes that each one of us is sure would positively change the outcomes of the clinical care that we provide on a daily basis.
The American Academy of Hospice and Palliative Medicine has taken on this unbelievably difficult challenge and the taskforce responsible is to be commended for the work that has been done. The five areas identified include:
- greater use of oral assisted feeding in people with advanced dementia (instead of percutaneous feeding tubes); - earlier referral to palliative care (even if disease modifying therapies are being pursued); - active management of implantable cardioverter-defibrillators at the end of life; - use of a single fraction (rather than multiple fractions) of radiotherapy for painful bony metastases; and - the avoidance of the use of topical lorazepam/diphenhydramine/haloperidol for nausea in hospice/palliative care settings.
The list in hospice and palliative care importantly includes collaborations with two other specialties: cardiology and radiation oncology. This builds a broader network of care addressing perennially difficult issues for health systems. But as we look to the type of recommendations made by other specialty groups in Choosing WiselyR, in general there is a focus on what clinicians within their respective specialties should do. In contrast, four of the five identified topics in the hospice and palliative care list are about what other specialties should do, and the fifth suggests that basic principles of clinical pharmacology are not well integrated into practice. How many times are parenteral medications given buccally or orally with no pharmacokinetic data? How often do we start a new medication by infusion without first giving a loading dose?
By any standards, hospice and palliative care is a relatively young area of clinical endeavor. In real terms, the data on which the taskforce could draw in order to develop the list are limited. Despite the increasing number of journals in hospice and palliative care, the majority of our published work remains retrospective. 2 No wonder it is hard to be confident about what interventions absolutely should or should not be in our palliative care toolbox. This editorial is to ask how the next list of five things that ‘physicians and patients should question’ will reflect the continuing evolution of hospice and palliative care evidence development and day-to-day practice, half a decade hence. Now that Choose WiselyR is in place, how do we as the clinical community in hospice and palliative care prepare for the next such opportunity? What program of work needs to be put in place to inform empirically the next set of recommendations? How will such a work program be prioritized?
Developing and using the evidence base that we have in hospice and palliative care is an ongoing challenge, as it is in any clinical discipline. It could be argued that because we are two to three decades behind the evidence base of many other disciplines, we are struggling as they were 20 to 30 years ago. The one difference is that the expectations of the community (as reflected in the ABIMF initiative) and of our clinical colleagues have also increased dramatically in that time. That indicates that we all must work to develop the depth and breadth of data to inform the choice of the next five questions. There is real urgency in this task and each and every one of us must contribute.
To fully inform the next five questions for the next list, there will be a number of research questions, some of which will require imaginative methodologies if we are going to complete such research in a timely way. Despite the primacy of phase III randomized controlled trials in evaluating new interventions as illustrated by the excellent study in this issue of the Journal by Epstein and colleagues, a wide range of approaches is going to be necessary to really evaluate our own practices and how they can be improved. Every piece of data that we collect in clinical care and service delivery needs to be mobilized to inform directly the advice given to specialist hospice/palliative care services that can most improve the care that we offer in the future.4–6
Every one of us can contribute to such an endeavor as part of everyday work by contributing our data to be pooled and help to inform future practice. Such a learning health care model is an expectation that patients and their families reasonably have. 7 Prospectively collected data can help to rapidly refine much of our practice in ways that will deliver our one universally held goal—improved patient outcomes—and inform the next list of five things that ‘physicians and patients should question,’ directly and intentionally improving day-to-day palliative care practice.
