How might a clinician start learning what matters most to their patients about end-of-life care? One way is to talk about choosing a health care proxy. In this interview, Kate Lally, MD, FACP, Chief of Palliative Care, Care New England Health System, shares how she uses the How to Choose a Health Care Proxy & How to Be a Health Care Proxy kit for this purpose. Dr. Lally is faculty for the Conversation Ready: Understanding and Respecting Patients’ End-of-Life Wishes virtual Expedition.
How do you introduce the topic of choosing a health care proxy?
I usually say something like, “Mrs. Smith, you obviously make all of your own decisions. However, if for any reason you couldn’t speak, who would speak for you?” I usually introduce the importance of appointing a proxy and then use the How to Choose a Health Care Proxy & How to Be a Health Care Proxy kit as a tool to help [my patient] figure out who to assign [as proxy] and how to talk with them. I try to do this routinely with all of my patients.
The Health Care Proxy kit is a nice resource to help patients think about their surrogate decision maker. The kit makes it seem like a normal, natural thing to talk about for patients — which it is — and not an indicator that I feel that they are sick or aren’t doing well. Some people learn better from having me explain something to them; others prefer to read something written down. It is great to have resources for either kind of learner.
Some patients have already thought about [who should be their proxy] and have a ready answer, but others don’t. I use the kit to help those who aren’t sure who to pick. It’s also helpful for people who’ve chosen a proxy, but they haven’t yet talked with them about what kind of care they would want if they got very ill.
How have patients responded when you talk about identifying a health care proxy?
Most people understand that a medical situation might arise where they can’t speak for themselves and they need someone to speak for them. This is generally not a scary subject to broach. Taking the next step and thinking about the type of care you would want is where it can get a bit scarier and people sometimes don’t want to think about it. Using both the Health Care Proxy Kit and the Conversation Starter Kit can make that discussion less scary.
Would you share a story that helps illustrate why helping patients identify a health care proxy is so important?
The stories that stick in my mind are the stories of people who didn’t choose a proxy and then ended up getting care at the end of life that was likely not consistent with their wishes. I often think of a woman that I cared for who had kidney failure and had been in and out of the hospital many times. Her son was always at her side and said he was her decision maker. While she was awake, she seemed amenable to having him help with decisions.
She became very ill, became unconscious, and was dying. Her son, after talking to her doctors, decided to move her onto hospice. Her brother showed up and said that she had never wanted her son involved and would never want hospice. Unfortunately, she had never formally assigned a health care proxy, so it wasn’t clear to the medical team what her wishes were. She ended up getting protracted medical treatments while her brother and son fought in court. Unfortunately, she passed away before the courts made a decision about her surrogate decision maker.
Note: This conversation was edited for length and clarity.
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