Tracy and I have been talking for some time about dying.
Precipitated by the death of friends, an increasing clarity of our own mortality and some of the news that drifts in and out of our own stream of consciousness, especially that of Brittany Maynard choosing to die rather than fight the death sentence that took her and Tracy’s first husband Bob. ( See “My Right to Death With Dignity” by Brittany Maynard, CNN Opinion, Nov. 4, 2014)
It is a good fight to fight to live.
But our life is a burbling stream beginning at the source and ending in the sea carrying there only the memories we lived. It ends, and we have built up a culture that refuses to see that end as inevitable and right.
We spend an inordinate amout of money and scarce resources fighting against that end, when it is a given.
In Forbes, 1/10/2013, ‘Why 5% of Patients Create 50% of Health Care Costs,’ Michael Bell writes, “According to one study (Banarto, McClellan, Kagy and Garber, 2004), 30% of all Medicare expenditures are attributed to the 5% of beneficiaries that die each year, with 1/3 of that cost occurring in the last month of life. I know there are other studies out there that say slightly different things, but the reality is simple: we spend an incredible amount of money on that last year and month.”
He makes a convincing case that it’s not worth it, and further that the diminished quality of life for those dying under extreme medical procedures is disturbingly traumatic for both the patient and those who care about the patient.
“It seems that no matter how much money you use during that last year/month, if the person is sick enough, the effort makes things worse. A lot of the money being spent is not only not helping, it is making that patient endure more bad experiences of death.”
My wife Tracy, who cares more about any living thing than any one person I’ve ever met, said that because of what she experienced in tending to her husband as his life drained away over 13 months, if ever she were to receive a similar diagnosis, she would want to simply be kept as comfortable as possible through palliative care and die at home with loved ones close.
And it seems that many in the medical community agree with her.
Ken Murray M.D. wrote ‘How Doctors Die – It’s Not Like the Rest of Us’ (Nov.30, Nexus). “It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.”
The comments section after the article was filled with responses from medical professionals who agreed. He wrote of his own struggle as a physician working with patients and families who truly want the best for their loved ones, trying to do the best he could to follow those wishes and guide them through very difficult times.
From those experiences he writes: “Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.”
There are a lot of reasons why we spend so much on “futile care.” And it’s easy to point fingers. But in truth, we can change that math ourselves if we want to. It takes some work, some research and some hard, clear discussions, but we can.
Murray wrote: “Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days.”
Brittany Maynard, in her final address to the world watching her choose death with dignity wrote: “The world is a beautiful place, travel has been my greatest teacher, my close friends and folks are the greatest givers. I even have a ring of support around my bed as I type. Goodbye world. Spread good energy. Pay it forward!”
She was 29.