Tools: Dr. Farber's Five Questions

Palliative Care as Narrative Medicine

Dr. Stuart Farber was a family practice doc. That tells you a lot to begin with. He majored in English as an undergraduate. He loved a good story and wrote poetry. I went to work for him as he was developing a Palliative Care program within the Family Medicine Department at the University of Washington in 2008, where for the first time I heard the term Narrative Medicine.

Storytelling. In the context of family systems. In many ways he was the perfect mentor for those of us wanting to learn the principles of Palliative Care.

I had come primarily from an oncology pain and symptom management background, with a post-graduate experience in geriatric internal medicine and then inpatient hospice.

He taught me the core questions to ask in a Palliative Care Consultation.

1)    Tell me a little bit about yourself or Where are you from?

Some folks will open up and give you a peek, others will not. If I was asked this I would say the following. I was raised in eastern North Carolina and moved to the Seattle area when I was 12, so this is home. My husband recently died. I’m a little adrift right now. I was an oncology and palliative care nurse for three decades. My kids are all local and I have a bunch of grandkids. I’m retired and writing a memoir.

So that gives you some place to start. There is family around. I have a medical background. I am grieving. Perhaps you offer condolences and remark that it must be good to have family close by. I might give you more background if I sense your empathy. My background is my story. You get important cues from someone’s life story.

2)    What are you hoping for?

Well, I have discovered that I have one copy of the Alzheimer’s gene—APOE4 and I am writing about being a dementia caregiver to both my mother and my husband, so it is at the front of my mind that it could happen to me. I am hoping that I do not get it and taking steps to make lifestyle changes that bring that risk down.

So not only am I grieving, but the experience of two family members having Alzheimer’s was likely traumatic and I am hoping I don’t get Alzheimer’s. This seems like a big disclosure and you reflect back to me that wow, that’s a lot. Pretty normal that I would be hoping not to suffer that same condition. Normalizing what I’m feeling is important.

3)    What are you most concerned about?

Well, yeah, that I will get it. The sense of dread is paralyzing. The experience with my husband who was the love of my life going through that is very fresh. I cannot bear the thought of my kids having to watch me go through that. I did go and get a set of baseline cognitive tests done and have signed up to be contacted for Alzheimer’s research studies in the future.

So I am self-aware enough to take some action around my fear. You reflect that it’s pretty amazing that I am doing as well as I am.

4)    What is your understanding of the current status of your health?

I’m pretty healthy, except for some asthma that has been kicking up of late and I am exercising and trying to eat well. I am writing everyday and participating in writing classes and feedback groups. I have a therapist I see twice a month. I have read that having one copy of the APOE4 gene (as opposed to two) does not raise the risk all that much. I am working hard on self-care, but I still feel deep sadness about my husband’s passing.

So you could reassure me that the loss of a spouse is huge and perhaps point me in the direction of a grief support group. Give me positive feedback about talking to a therapist and how writing can be therapeutic. Reinforce that educating myself about Alzheimer’s risk factors is self care.

5)    What is the most important thing right now?

The most important thing for me is to be able to finish this book. It is our love story that morphs into an Alzheimer’s journey.  Even though we were both medical people, we were unprepared for how difficult it was and many times felt abandoned by the health care system. I feel like it holds so much meaning and purpose for me to tell the story in a way that can help others get through it. Right now my asthma is causing me to have a lot of difficulty doing the voice-over on the essays I am putting out. It’s upsetting.

I have always said this is the most important question of all. It speaks directly to what the patient’s goals are in the near term and will often break the dam of closely contained emotion. So I need a pulmonary consult and with all the other things going on in my life, it has not risen to the top of my to do list. I’m now going through a workup and trying a new inhaler.

This is a very simple example of how these five questions can drill down to find what someone’s immediate needs are. In reality this would constitute the first of many such check ins from a palliative care provider over time, each one building on the story that they drew out at their last meeting. It’s about establishing a caring relationship that leads to action steps that are patient goal directed.

Love this. Loved Dr. Farber and was so lucky to have worked with him.