In 2003 the American National Consensus Guideline project defined palliative care as that aspect of Medicine that works to relieve suffering and promote quality of life. That’s fine, as far as it goes, although the definition includes a lot of territory – everything from a nasal spray for a stuffy nose to morphine and spiritual support. So it might be worth asking, what is not palliative care? Often care focusing on cure or life-prolongation is invoked as representing “traditional” (non-palliative) medicine. Discussions about the relationship between palliative and non-palliative care rightly note that these two aspects of care can and often should operate synergistically. Begging the obvious – it is not just the dying who wish not to suffer in illness. However, there is still something about this palliative/non-palliative dichotomy that bugs me.
In my more extreme moments, I have ranted about what I have labeled the cult of cure. This “cult” takes a truly radical position. The apparent goal of this group is to cure – everything. All disease would disappear. Presumably, even old age and death would be vanquished. Like the fairy tale, the goal apparently is to live “happily ever after.” While this makes a nice fairy tale, it is hard for me to imagine how such a world would work. One could argue that this belief system represents the driving ethos of Modern Medicine. It is cult-like not in its size, but in its stubborn refusal to hold up for reexamination its doctrine to the clear light of reality. It is also cult-like in its lack of balance. By focusing excessively on cure, other aspects of medicine and healing have been sorely neglected. Disciples of the cult of cure are not completely insensitive to the problem of suffering in illness. However, they are blinded by a magical belief that IF we can just cure everything, then suffering will disappear. The evidence is overwhelming that so far we have not succeeded in doing so.
I go on like this, because I am struggling to understand why the balance in our medical system has been tipped so far to the extreme of cure and away from alleviation of suffering as a primary charge of healing. I do not believe it is because physicians and other clinicians are bad people. Quite the contrary. They care deeply. However, I believe that something bordering on a mass psychosis is at work. Despite the great advances of medical science, the mortality rate remains what it has always been, 100%. At best, we can prevent certain ways of dying, so-called pre-mature deaths, but always at the cost of creating new illnesses and different ways of dying. That is not a terrible thing. It is very good that we have radically reduced infant mortality due to gastroenteritis, for example. But even good things have their consequences. Even very good things like seatbelts are “carcinogenic.” Decreasing the chance of dying one way (auto accidents) must to some degree increase all other causes of death. The problem is that as a society we are largely ignoring the inevitable “side-effects” of our medical advances.
Another tragic consequence of a cult-of-cure mentality is that we will inevitably be defined by failure, because success (immortality) is always beyond our reach. The obituary may honor the departed for a “valiant battle with cancer.” Left unsaid is that the battle was lost. In our hospice, I sometimes overhear staffing say things like, “Mr. Smith? Oh, he is not doing well.” What they mean by this is usually that Mr. Smith is progressing in his dying. Mr. Smith may otherwise be doing quite well, thank you. But his health is…failing. But does it have to be this way?
Arthur Kleinman, psychiatrist and anthropologist in his book, Writing at the Margin, compares our Western biomedical system to that of other world systems of healing. He notes that virtually all other medical systems take relief of suffering as a priority in healing. World systems (including antiquated Galenic medicine in the West) also understood health and illness as issues of balance, not of cure (success) or non-cure (failure). The Chinese Yin-Yang system serves as an example. He also noted that most medical systems do not narrowly construct illness as occurring only in individual bodies, but as events with social, cultural, and environmental components and contexts. Reading this helped me understand the great challenge we who work in palliative care have before us. We take the family as the unit of care. Suffering is a primary, not secondary concern for us and, while rarely stated this way, much of what we do in helping relieve suffering and promote quality of life relates to helping people find an optimal balance - given their circumstances.
So, finally, let us return to the initial question of palliative and non-palliative care. What I think (or hope) palliative care is doing as a social movement is to question the win-lose tenets of a cult-of-cure philosophy. I think we need to redefine health, not as the absence of disease, but as an optimal balance, given the circumstances. In some cases, finding this balance will mean effecting a cure. If a wayward pneumococcus finds its way to the lungs of an otherwise healthy person, finding an optimal balance will probably involve treating the resulting pneumonia with antibiotics. On the other hand such a redefinition would also allow us to consider the possibility that people can die “healthy.” That is, given their circumstances (advanced disease) they can be optimally balanced in terms of symptom management and in terms of the psychological, social, cultural, and spiritual dimensions of their lives. For me, this is not some fairy tale, because I have witnessed such healthy deaths. I hope when my time comes I am half as healthy.
Were we to have such a redefinition of health and illness, the current dichotomy of palliative and non-palliative care would seem, well, rather ridiculous. What might the slogan be for such a redefinition of health? Borrowing from the United States Army, I might suggest that to be healthy is to “Be. All that you can be.”