None of us wants to see ourselves as an ostrich, with our head in the sand, hoping bad things won’t happen if we just don’t look or pretend it’s not there. But even though it will happen to all of us and everyone we care about, we can’t face up to the inevitability of death. And while people die all the time in hospitals, doctors and nurses have a hard time facing up to death, as well. Not surprising. Their job is to save lives or extend them.
But maybe we should talk about it. Talk to yourself, and have a discussion with people you care about. What do you want your death – probably from cancer or a chronic disease – to be like? If you are in the ICU, how aggressive do you want care to be? How much technology should come to bare and for what purpose?
Outside the ICU, should you travel overseas with the hope of finding a cure when there was no hope close to home? Would you be losing precious time with family and friends?
These are tough conversations to have. End of life is tough to face.
About two years ago I got a call from a man in my synagogue. He had been diagnosed with inoperable brain cancer. He did his due diligence in a measured way to check authoritative sources to see if anything could be done. There wasn’t. He began to accept that and celebrate the life that he had that would end in a few months or a year, at most. He invited Patient Power to make a video with him, which we did, where he shared his wisdom from a life well lived. And then, not long after, he died.
His family pleaded with us to not release the video, and we haven’t so far. They said it was too tough for them and I can understand. Death, or in this case, video of a man who had made peace with it approaching, is something we just can’t bring ourselves to talk about.
I have found there’s a liberation when we do. We found that when we made the video mentioned above, the man was very positive as he looked back on his life. And I found that in another instance about five years ago when I sat at the ICU bedside of my beloved father, Max, age 92 and still a practicing attorney, as he decided to ask for an end to extraordinary measures. His advanced prostate cancer was getting the better of him and while technology, with significant discomfort and loss of dignity, could keep him alive for another week or two, he opted to request that he be allowed to die a gentle death. Was it sad? Absolutely? But we had several hours to talk and reflect before he slipped away. It was a gift. Facing end-of life.
America has a long way to go on this discussion for patients, family members and healthcare professionals. Robert Martensen, a former emergency room doctor and now medical historian, has written a great book about this called A Life Worth Living.
How many people are ready to face a difficult subject now, a subject that will become very real for each of us one day sooner or later.
I am hoping people will begin discussing these difficult issues, and that one day soon the video testimony from the man who died of brain cancer will be released as a celebration for his family rather than a reliving of a life lost.
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