Sealskin Birds and Cultural Discussions about End of Life Care

I got to see one of my favorite patients today. He has severe, end-stage COPD (emphysema) and so I see him frequently to keep him out of the hospital (where he was practically living in the Winter/Spring, because of frequent exacerbations). He is from Little Diomede, and his sweet wife is from Big Diomede (technically Russia).

Their families used to cross over between the two islands, before the International Date Line was constructed, before the US bought Alaska from Russia. They told me stories of how they used to love growing up in Diomede. They reminisced of all the meat, the eggs, and birds and greens and fish they hunted and gathered for subsisting off the land. They told me of their arts and crafts and ivory carving. My patient is an ivory carver. He still carves some when he is not feeling too short of breath or run down.

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Months ago, when I first met him, I brought up end stage care for COPD. I thought I was doing the right thing medically by explaining what to expect with COPD, and the downward stepping process, and how it is a terminal diagnosis. I asked him what his wishes would be if he were to stop breathing or his heart were to stop beating. If he would want to be resuscitated or a DNR. I remember he got very quiet and looked down at the floor. When he looked up, his eyes were stormy cloudy. But he didn’t say anything. I was not sure if he was scared or upset or just taking it in, or what… I asked him what he was thinking or feeling, but he didn’t say.

A few more appointments I again tried to gently bring it up, explaining that we only wanted to know what his wishes were so we could do what he wanted if that day unexpectedly ever came. One day his eyes flashed and he told me that it is not appropriate to bring up this topic to elders. That to speak to someone about their death or dying is to almost seen as a curse them. I had been wondering if it was this. I asked him if he would prefer if we physicians would just make the decision in a patient’s best interest when that time comes. He said yes. He is not the first elder who has expressed this to me.

I remember learning about this very different medical-cultural decision in residency on my Palliative Care month. There are other countries, in Asia, where to speak to elders about their own death is taboo. The doctors, rather than pressing the unwanted subject, understand that it is in their purview to decide whether and how much a patient would be resuscitated. They are trusted to do the best for the patient and make the right decision about whether a full code would be appropriate or not.

I felt bad to have made him feel so uncomfortable. I explained to him that the general culture in the Lower 48 is to make sure that doctors know and respect the wishes of each patient. He expressed that he kind of understood.

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The next visit he greeted me in his language, Inupiaq. His wife made these beautiful little birds of sealskin that I bought. She told me she was grateful and now they can buy food  (!) These birds grace my office space with a little reminders of my beloved patients who are teaching me so much. icon smile Sealskin Birds and Cultural Discussions about End of Life Care

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They are so happy that it is summer and the salmon are running the rivers now I was told by another patient that this year is odd, that all the salmon are running together, instead of in their normal sequence. But there is a lot of fish to catch and dry! When I asked my patient and his wife about it, they said “Everything is changing.” The climate is changing so much.

I have found that the people who are the most acutely aware of climate change are those who are subsistence living.

In any case, they are happy their family is bringing them seal meat and walrus meat! they wanted to leave the appointment quickly and go get food. I prescribed him a Z-pack for his worsening cough, with encouragement to take it so he can stay strong and stay out of the hospital. He said he will try to take it. he does not like Western medicine. When I’ve asked him about it before, he doesn’t say much, but know there is more to the reasons why.

Maybe someday he will tell me more what he really thinks about the pills and the inhalers he is prescribed, just like he did about the end of life discussions. I know he misses the tribal healing that he grew up with. I think he just might benefit from the amazing Tribal Healers that we have at Norton Sound.

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