Who's in charge here?

I never know what I’m walking into when I have a new hospice admission. Likewise, my patients and their families don’t always understand why I’m there. The nurse and the home health aide, even the chaplain, have very clearly defined roles. When I tell people I just want to talk, it can make them nervous.

At that first visit, death doesn’t always come up in the conversation. It’s a delicate balance: building rapport and offering education and being present without pushing too hard on the door to deeper issues. However, sometimes the patient opens the door for me. Take, for instance, the other day: I visited with a new patient who almost immediately wanted to talk about her impending death. She wanted to know how much time she had left (can’t tell you, sorry); how involved she could be in her funeral planning (as involved as you want!); and how it was possible to feel physically ok and somehow still be dying (take that one as a gift, my friend). We had a difficult but very nice conversation and I think I was helpful.

The next day, the nurse called me to tell me that the patient’s sister didn’t want me to talk to the patient about end of life issues. (Imagine me rolling my eyes).

Luckily, the nurse is no shrinking violet; she informed the sister that the patient is alert and oriented times 72 and gets to be a part of her care planning. In fact, the regulations (if you, like me, are a rule-follower) insist upon the patient being involved in her own care.

But families don’t care about the regulations; they care about their loved ones not being sad, or scared, or “losing hope.” I can’t tell you how many times a (well-meaning) family member has said to me, “We don’t want him to know he’s on hospice” or “we didn’t tell her that she’s dying.” (Spoiler alert: people typically know that they’re dying). And truly, I get it: we don’t want the people we love to be afraid or feel sad or suffer. But, as I always remind those family members, we don’t get to make decisions for other people as long as they’re capable of making their own. We can be tactful; we can be kind. But I will not lie to a patient who asks me a direct question. I will not change the subject when a patient wants to talk about her death. It’s easier sometimes, as I tell my patients and their family members, to bear one’s soul to a stranger, if only because they don’t have to be careful. I won’t start crying or tell them it’s going to be ok; they don’t have to protect me the way they want to protect their loved ones.

In my most gracious moments, I can acknowledge that protection is what people like the afore-mentioned sister are after. In my more annoyed moments, I start crabbing about how it’s all about control and who wants it and who has it. Both can be true! What’s important is to focus, once again, on the person we are serving and to (kindly, firmly, lovingly) set boundaries with everyone else. Advocating for patient choice is foundational to this work; what a joy when it is so easily done.