Understanding what you mean by “provide comfort care” can be very challenging.  We use the term as shorthand within medicine, but it is confusing to the “real” world of our patients and families.  Palliative care is often focused on helping people be more comfortable, but isn’t that always our goal in medicine?  We sometime employ the scalpel or the toxic chemical to take patients through great discomfort to get to an end of feeling better, but our long-term goal is to give the patient more comfort and peace so they can pursue what gives life meaning to them.  Life may be short with advanced illness, but that probably makes the choices even more vital.  A recent essay in JAMA recognizes the ambiguity in the term “comfort care” and asks what that term means.  Why is Palliative Care so often seen as a binary medical choice in advanced illness?

“There’s nothing more we can do,” say my residents, “so let’s call Palliative Care so we can move to “comfort care”.

As the essay brilliantly highlights: what’s a family member to think?  Do we really mean they must “choose between life-extending therapies and experiencing relief”?

Here’s the dilemma I have faced personally: a mother-in-law with marginal decisional capacity after the not-quite-big-enough stroke.  She didn’t want to be alive.  In fact one of the very few coherent sentences she said in the 6 months she lived after the stroke was “If I had a gun, I’d shoot myself.” We all wanted to make her comfortable.  But what would “comfort care” look like?  If you fall and break a bunch of ribs and fill your chest with blood as she did, is hospitalization and a chest tube too much, or is it part of pain relief and comfort for her breathing? Another common dilemma: after a hip fracture, if it means the difference between being able to walk to your dining room to be around friends and to get a dinner tray plunked down in your room, which is better?  (And what are the odds of that desired result?)

We had to work shoulder to shoulder with BOTH surgeons and palliative care specialists to try to discern what was in our mother’s best interest.  She stayed in the hospital with chest tubes for 5 days, then back to her assisted care facility for the last 2 months of her life.  I don’t know if we made the right choice, the one that maximized her comfort.  But it took a lot of people to think through our best guess as to a good option.  And we knew a lot about medical choices!  What about our patients and their families, who would be led by (at the mercy of?) whomever she would have been assigned to from the ER?

As the authors point out, the implied dichotomy of switching to “comfort care” suggests that Palliative Care is not actually medical treatment.  There is no switch from one “type” of care to another.  We in PC consult along the way, trying at each step to help the patient be as comfortable as possible and to be intentional about medical choices.  The conversation should start before the advanced illness leads to these end-game choices.  As the “Serious Illness Guide” suggests, we can stimulate trade-off questions like:

“If you become sicker, how much are you willing to go through for the possibility of gaining more time?” (Bernacki 2014).

We have such a long way to go to teach our colleagues and ourselves some better scripts for talking to people about the best practices in end of life care and the importance of doing it well.  The complexities of balancing interventions with comfort near the end of life are enormous and can’t be easily separated.

For more information:

Kelemen AM, Groninger J. Ambiguity in end-of-life care terminology – what do we mean by “comfort care?” JAMA 2018; 178: 1442-3.

Bernacki RE, Block SD. Communication about serious illness care goals: a review and synthesis of best practices.  JAMA Intern Med 2014; 174: 1994-2003.