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Getting Things Right – Advance Care Planning September 21, 2014

Posted by ijwoods in Blog+.
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During a recent conversation, one friend said, “I told my husband that when I’m too sick and frail, and I look ready to go, just blast me with a shotgun and toss me in the back yard.” She made us all laugh and lightened up what was becoming a dour discussion on end-of-life choices. But it also got me thinking about many of the off-the-cuff conversations I’ve had with people about what we want to happen when it’s time to wind down and pass away.

Such conversations usually end up being a sentence or two such as, “cremate me and sprinkle my ashes in the Hudson River.”  Or  “just bury me in the family plot and don’t make a fuss.” I can’t remember any depth to these conversations except for the ones I had with Kris. Inspired by the fact that her passing was a serious possibility, and because she was tenacious in understanding the nuances of things, a considerable amount of discussion and thought was given to this subject. But outside of that I can’t think of a single in depth conversation I had about this, even with doctors.

A  New York Times article recently reported on how insurance companies were now beginning to reimburse doctors for having end-of-life conversations with patients. With boomers now in their 50’s, 60’s and 70’s, this is probably a good thing.  Even Medicare is considering making it reimbursable despite its exclusion from the Affordable Care Act. With such a big swath of the population now looked at as “seniors”, any way to get this conversation going will be helpful.  But, I have to admit that whenever business comes into play with medicine I get suspicious.

Let’s face it, the insurance companies don’t benefit from paying out large sums to keep someone on constant life support. Yet, the hospitals do benefit. It reportedly costs over $10,000 per day to keep someone in the intensive care unit.  Doctors, who receive payment from insurance companies, or work with hospitals have incentives both ways.  There’s a lot of conflict of interest here. Polls show that a majority of people wish to die at home, yet 75% die in a hospital or nursing home. It makes me wonder why, and what it tells me is that I need to take control of the situation. By being clear, discussing it and thinking it through I can create a directive that reflects my exact wishes and ensures I will have someone I can trust to see it through.

Yet, even those who are clear about their end-of-life wishes and create legally binding advance directives can run across some unexpected complications. Earlier this summer Casey Kasem, the well known radio personality of the American Top Forty countdown, passed away. The papers were (and continue to be) following the turmoil around his death. In Kasem’s case he clearly documented what he wanted; his daughter was to be in charge of medical decisions and that he not be kept alive if it  “would result in a mere biological existence, devoid of cognitive function, with no reasonable hope for normal functioning.” 

Sounds pretty good. But I guess no one anticipated that his wife would hijack him from the nursing home when he was quite ill and then move him around North America to avoid detection. In doing so she could to keep him “biologically” alive and not follow his stated wishes. With help from the courts and by virtue of the directive, his daughter eventually got him back to fulfill his wishes except for the last part – to be buried in Los Angeles. News reports have it that his wife snatched his body from the funeral home and brought it to Norway. What a mess. Although this is hopefully an anomaly, when I hear such stories it makes me realize that even with an advance directive things can go haywire, so how about without one? The chances of us getting what we wish seem very slim.

What I found with Kris was that our conversations helped me quite a bit by taking out the guesswork. I knew she didn’t want to feel that her sickness and passing was going to be a burden for anyone (it never was, Kris!). She knew she wanted to wind down in the comforts of her own home in a tranquil and loving environment. She wanted people to be able to feel good about any final ceremonies. And she wanted to go through her last days with nothing on her mind to distract her from going within and departing as consciously and as openly as possible. Judging from her final weeks on earth I would have to say she accomplished what she wanted.

It didn’t surprise me that a study in the BMJ (British Medical Journal) concluded that “Advance care planning improves end of life care and patient and  family satisfaction and reduces stress, anxiety, and depression in surviving relatives.”  All this pre-planning can really help, it’s just a matter of getting it done sooner than later. For some help and a thorough overview on advance care planning, with some excellent links, check out the following document at the National Institute of Aging: Advance Care Planning.