Others, however, come back to us again and again. It is not just that they have chronic conditions like heart failure, or COPD, or diabetes. Rather, it is that they have combinations of these and other conditions and that these life-limiting disorders have already devastated their bodies. These persons are riding the rim of a maelstrom. We may rescue them from each crisis, albeit briefly, but they are left weaker and ever more vulnerable to yet another hospital admission, or worse.
When we discuss these patients, I find myself asking time and again, "have we asked our Palliative Care team to get involved?" And time and again, the answer comes - from nurses, from physicians, from Case Managers, from all of us - "no, the patient (or the daughter, or the son) isn't ready for that." This is a baffling and disturbing statement. Let me explain my thinking.
Last week I finished Atul Gawande's brilliant exposition on America and the problem of death, entitled "Being Mortal -- Medicine and What Matters in the End." Much of the book is an exploration of the insights that comprise the field of Palliative Medicine, from the notion that the relief of suffering really matters (and is much more than an asterisk applied to the science of curing) to the idea that our role as health professionals must include efforts to identify what matters to patients and families as the progression of chronic disease comes to define their life stories. The essential questions are the same. What are your goals and your expectations? Is it your wish to fight death with every last weapon in our arsenal, regardless the human cost? For some, the answer is exactly and unambiguously "Yes!" and it is best that the patient be provided the information necessary to understand this choice. And it is best that we know the choice so that we can tailor our care accordingly.
At other times, the patient is looking for a plan - to paraphrase Gawande - that is less George Custer and more Robert E Lee. Fight the battles that can be won, but understand the battlefield, and when victory cannot be obtained, determine a course of action that limits harm and preserves essential human dignity. This is why I am so frustrated to hear "the patient isn't ready for that."
The statement makes no sense. What is it the patient isn't ready for? Not ready to be asked whether we are effectively relieving their suffering? Not ready to know what lies ahead? Not ready to have their present and future choices explained?
When the answer is that "the patient isn't ready for that," I fear that we have failed twice over. The first failure resulted in the need for Palliative specialists in the first place. As though having honest and sensitive conversations with patients involves a procedure for which only a few physicians are qualified. And then the second failure, which involves turning Palliative Medicine teams into caricatures of themselves, or of what right wingers like to call "death panels." Much is implied when we say "the patient isn't ready" - not so much about the patient or her family, but about us.
We can do better. The first thing we need to do is to resist the temptation to trivialize the heart-wrenching decisions that patients and families need to make as the end draws near. Respect the process. The second is never to forget that even though Palliative Medicine consultations sometimes lead to a movement away from curative treatment and toward comfort care, this is NOT the goal. The reality is more complex. The aim of these teams is really no different than that of every physician and nurse - to understand the patient and in doing so learn how to give the care that the person wants and needs. It is nothing less than a perversion of our mission if we view every instance where life extending care is withdrawn a "success" and every one where it is not a "failure."
Finally, we need to figure out how to deliver "care" -- and not just treatment. This means inviting questions, promoting dialogue early and often, and giving patients that which has become scarcer and more valuable than almost anything else in healthcare, by which of course I mean our time.
