Abstract
The majority of people perform well in a crisis and when the spotlight is on them; it's on the Sunday afternoons of this life, when nobody is looking, that the spirit falters.
While palliative care services have successfully adapted to their local circumstances and environments, including the income and health care structures within different countries, this variation in practice and access is probably greater than many other areas of health care. And it brings with it some disadvantages—it is much easier for palliative and hospice care to become an optional add on—if it is nebulous, variable, or poorly defined, and if some groups receive it and others do not.
Palliative care usually relies on other doctors, and sometimes nurses, to refer patients. There are rarely standards of referral—and frequently patients are told that they are “too early” for palliative care by referring clinicians. Therefore, the study reported by Johnson et al. 5 in this issue of the Journal of Palliative Medicine takes us forward in trying to understand what affects referring clinicians, particularly those of general practitioners and oncologists—the most common referring groups. The results show uncertainty and variation among referring clinicians, although there is a clear pattern that symptom related problems most often provoke consideration of referral. Timing and consideration of psychological, social or spiritual factors or general wellbeing are all highly varied. Interestingly, family or caregiver concerns were also less often raised.
The authors identified the importance of open and honest communication among referring clinicians as an important potential facilitator, or, when absent, as a barrier. Ambiguous language—which might be used in a mistaken belief that it protects the patient, can continue a misconception about the realistic goals of treatment, thus making it unlikely the clinician will discuss palliative care.
There are several important solutions that we could consider to this problem of variable access. First, palliative and hospice care must begin to standardise its terminology. We remain confusing to others. Different terms are often used—e.g., palliative care, hospice, end-of-life care—each meaning slightly different things in different contexts. For example, when we studied meanings of the term “end-of-life care,” family doctors variably thought it was anything from the last days of life to the last year of life. 6 Hospice in the United States tends to refer to home care programs, while in the United Kingdom this usually implies an inpatient unit. In some countries hospice means hospital. Palliative care is perhaps a more universal word, but can be misused in many oncology settings, as “palliative treatments” meaning a chemotherapy that will not cure or prolong life, in the hope of reducing symptoms.
Second, there increasingly is an argument that palliative care should be provided according to need rather than disease or prognosis. This could make referral criteria easier, if, as Johnson and colleagues suggest that referrers begin to use some agreed or compliant standard assessment or outcome tools to screen for when patients have multidimensional needs. Such tools do exist, 7 but if referrers are to use them, palliative care staff must lead the way and use them also.
Third, we need to increase the public awareness and understanding of the agreed common understanding of palliative care, in all sections of society, so that patients are aware of and can request access to palliative care, rather than currently relying on the knowledge of local clinicians. Indeed could some of the assessment and outcome tools suggested above be used directly by patients and/or families to indicate their need for care?
Fourth, palliative care itself must develop and improve its practice. There is still many areas of care and treatments that are not optimal. To improve care for patients and families we need guidelines based on the best evidence for practice, such as those recently developed for the management of depression. 8 We also need discovery and rigorous testing of better treatments and models of care, including systems like the COPE intervention reported in this issue Meyers et al. 9 The evidence provided in this issue of Temel et al. 10 enables us to determine in more detail what is needed for different types of patients being referred to palliative care. If specialist palliative care does not fully grasp the research mantle and drive care forward, in all its aspects, it would rightly be designated as a purely educational optional service. This means prioritizing research participation even in centers that do not lead studies, and overcoming some of the barriers to research such as consensus on definitions, capacity, funding, environment, and culture. 11