Palliative Care: Once Taboo, Now Overdue?

Gary Blanchard, MD

“Can you believe this family? They just don’t get it.”

“I just don’t understand why they want us to ‘do everything’ for their father… Look at him!”

“Why would anyone allow their mother to suffer like this?”

As a resident Physician, I still remember first hearing these rueful, exasperated sighs in the face of overwhelming perceived futility from my physician and nursing colleagues taking care of frail, older adults nearing the end of life. It was the first time I was forced to really confront what palliative care was, could be, or should be. My initial emotional reaction, I remember, was mostly one of groupthink nodding to these comments: it really did seem, from our perspective, like these families were being “unreasonable,” “stubborn,” and, above all, “difficult.” From our perspective, we were bandying terms like “widely metastatic,” “ejection fraction of 10-15%,” and “non-revascularizable.” How could these families not appreciate that more of the “do everything” panoply had clearly become more burdensome than beneficial? We all felt disheartened and helpless in the face of suffering.

Fifteen formative years later, I believe that the phrase “palliative care” is still the most widely misunderstood medical term among not only the lay public (see: news coverage of any celebrity/politician choosing to “stop fighting” their cancer “battle” when opting to enroll in hospice care) but also physicians, who often Pavlovianly associate palliative care with imminent death. But, what I’ve come to realize as a practicing geriatrician and Saint Vincent Hospital’s palliative care medical director is that the families that we perceive to spar with us — those who “just don’t get it” — have often times never had someone actually sit down with them at any point of their loved one’s illness to assess their understanding of their disease, let alone offer a kind, but clear, prognosis or expected disease trajectory. I’ve observed that the common thread when contentiousness arises is that a physician has not tried to align with a cognitively and functionally vulnerable patient and their family on their overall goals for their treatment plan, even when they might have widely metastatic disease, severe HFrEF, or non-revascularizable ischemic heart disease.

The data from a 2014 JAMA Internal Medicine review article bears this out, as seen through the facts here:

• 69% of patients with metastatic lung cancer and 81% with metastatic colon cancer did not understand that chemotherapy was very unlikely to cure their cancer.

• The first conversation about end-of-life care took place an average of 33 days before death for patients with metastatic lung and colorectal cancer.

• 90% of hemodialysis patients reported that their physicians had not discussed prognosis.

I would at this point offer forgiveness and a healthy dose of empathy for my physician colleagues and for myself as well. For even in someone who practices palliative medicine, it is never easy being present, trying to align competing cultural and religious differences, and trying to unravel years of family dynamics through a goals of care conversation. And very few physicians up until recently report having received formal training on how to hold goals of care discussions, with communication very much being a skill to be learned as a central line. I do not always navigate perfectly for sure.

Inpatient medicine increasingly feels like a turnstile with frequent ports of re-entry, not enough time for well-meaning physicians to be present, and feeling shackled to the electronic patient. Often times we end up changing someone’s diuretic regimen from a pill to IV, back to the same pill at the same dose they came on, knowing that there is a ~35% chance they’ll be back within a month. And yet, the ecosystem in which we practice does not make it easy for us to ask our patients, “What do you think of all this? How do you see this all playing out?” It is often a dehumanizing experience to be a patient in the hospital, often with a runaway locomotive momentum of care plans that you don’t really, truly have a say in.

Palliative care is a great many things, from aggressive symptom management to a bridge to allow for more services to more collaborative care. But, in essence, it is an active reflective process — “goals of care” discussion — that tries to align a patient’s medical plan with who they are as a person, mindful of their personality, background, upbringing, cultural preferences, and religious preferences. It is being present through active, shared-decision-making. It is asking, “What matters most to you in all this?”

And, remember: Being a palliative care provider does not mean that you automatically deescalate everyone’s care. Far from it. Geriatricians and palliative providers are often the ones advocating for more care for an older adult, trying to overcome the bias of ageism. When we survey Americans, typically ~85% often say that they value quality of days over quantity of days. But, 85% is not 100% by my napkin math and we need to be comfortable in honoring a heartfelt care plan expressed by a patient who values something different than we might choose for ourselves or our families.

We are all inundated with incessant multitasking, but I would urge all my colleagues to try to emotionally triage their time to allow for a five minute conversation with one patient, once a day, either in the inpatient or outpatient setting. For someone who has perhaps had frequent readmissions, or worsening frailty, you might ask, “What do you understand about all of this? What matters most in all of this to you?”

I believe that only by normalizing these sorts of conversations upstream — not at 3 am — can we tint our perspective away from patients being “difficult” and “unreasonable.”

Gary Blanchard, MD Geriatrics and Palliative Care Medical Director, Saint Vincent Hospital Head of Kelley House, University of Massachusetts Chan Medical School