The practice of medicine is a dance that occurs in the gap between what we know and what we don’t know. The practice of palliative care, my specialty, is uniquely positioned to serve people of all backgrounds and circumstances as they navigate their paths in the face of serious and progressive illnesses of all sorts. The consensus definition is straightforward:
Palliative care is specialized medical care for people with serious illness. It focuses on providing patients with relief from the symptoms, pain and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.
My own operational definition emphasizes the practical. I tell folks and their families that we are helpful in navigating the frequently complex, and always difficult, circumstances. We target our assistance to help provide value, while avoiding harm, within our crazy and broken healthcare system. It turns out that the relief of symptoms is often the least challenging element. What’s often missing for patients is wise guidance, clear information, and clarity around their prognosis and their in the face of life completion.
Health Literacy = Shared Choice-Making
Here’s an example of a gap. It turns out that about 2.5 million people die every year. Depending on whom you ask and how you ask, researchers have found that somewhere between 50-90% of people would prefer to die in their homes. However, the data shows that approximately 80% of people die somewhere else (hospital wards and ICUs, nursing homes, and the like), despite hard-won improvements over the last few years. And many people do not requeust or accept palliative care. Why is that?
“Mind the gap” by Marcin Wichary is licensed under CC BY 2.0
Health literacy focuses on effective communication and empowers shared choice-making. The milieu in which we operate, however, is an industrial system of delivery obsessed with efficiency and driven by obsolete economics, that rewards doing more stuff to people rather than for them. The people providing the care and the people receiving the care are simply cogs in that machine.
Except, of course, people are not mechanical—and that is especially true when they are in great distress. For people with illness and their families, this translates to disempowerment and gaps between what they understand, what they want, and what they get. The poorly designed system predictably leads to avoidable suffering. For those of us who identify as caregivers, it is responsible for unprecedented levels of dissatisfaction and burnout.
A Focus on the Person at the Center
Trust me on this: death is not a medical experience. Not at all. It is a human experience, a family experience, and a mysterious truth. Although our system of healthcare can deliver improved quality of life and even prolonged survival in some situations, blind trust not informed by clarity and understanding can also lead to many hazards. Examples include excessive and dangerous interventions and a drift from the best interests of the person at the center of the situation toward expediency for distressed healthcare providers.
Remember that all people you encounter, both at home and in healthcare settings, have their own perspectives on the way forward—and they may not match yours. None of them are “right.” The right path for you is the one you choose. Slow them down. The “secret sauce” of palliative care is time. We have more of it and we know how to spend it to reorganize care around the best interests of the person at the center—as defined by the person at the center.
We live in a transforming world electrified by rapid changes resulting from communication and information technologies. One result is that people are thinking and talking about topics that have remained sequestered and taboo for decades. The hiding of death (and birth, for that matter) by medicalization in this brief era of Modern Medicine is an anomaly.
A chorus of hopeful phenomena include the health literacy, human-centered design, patient engagement, and e-patient movements. Powerful initiatives like The Conversation Project and The Dinner Party address the tough issues of advance care planning and bereavement outside of the traditional medical system and across your dinner table!
Whatever Your Job, Start Talking
Start talking, folks. Contribute to the much needed clarity and understanding. Talk to your families, your friends, and your healthcare providers about how you see your life completing. Before you and the people you love get sick (and you/they will), allow yourselves to reflect on and communicate with each other about the “big stuff,” the important stuff. Trust yourselves to not freak out at the thought that life doesn’t go on forever. (You won’t and it doesn’t.)
And mind the many gaps. That’s where the clues to who you are and what you want from life are waiting.