Accepting the Unacceptable

What is acceptable to a patient on palliative care?

I reassured an end stage cancer patient recently that now that he was on palliative care, comfort was our goal, not cure. No more uncomfortable procedures, tests, or chemotherapy. Comfort measures only.

But what if these “comfort” measures don’t give comfort? What if, for example, that foley catheter to drain a bladder that no longer can empty on its own is the worst case scenario for our patient? Uncomfortable with it, uncomfortable without it. What if side effects of pain medications are making the rest of our patient’s life unlivable and unmanageable? Again, uncomfortable with them, uncomfortable without them. Our patient has come to expect that his primary diagnosis will lead to the end of his life, but what about secondary health conditions that he did not count on happening?

The loss of control at end of life feels so real and raw and it is often, as a clinician, hard to face.

We like to fix things, to troubleshoot, to send somebody home in better shape than when we first met them. I fixed your bladder drainage problem with this catheter. See, all better now and fixed. And yet, we are dealing with a whole person, their spouse, their family, their expectations. It just isn’t that simple.

We are affected by those we treat as we affect them. Many of us often go home after an interaction like that, drained and sad, with the overwhelming feeling of just not having enough to offer. We give ourselves mental-work arounds to prevent burnout and taking too much home with us from work. A catheter isn’t that bad, they’ll adjust. But there are always cases that stick with us, patients we felt helpless to relieve of their discomfort.

How do you stay in a job that demands you see the hardest part of life: cancer, death, pain and still stay relatively sane and well adjusted?

I would like to say I have the answer, the perfect thing to say, the holistic solution to helping a patient accept what has always been unacceptable in their mind; for example, a catheter. The perfect thing to say to you, a caregiver who takes home that feeling of not enough. But I don’t have that answer. I can only say to my patient, I’m sorry this has happened. This one more thing, an unexpected thing, an uncontrollable thing, on top of all that you have already gone through and endured.

And I can offer to you and to them the suggestion to go home, look around you and see what makes you feel most grateful, what makes you feel most loved and alive. What are your happiest memories and what are your most important conquests. These things make the catheters in life more bearable and maybe even worthwhile.