I don’t often write about the dying side of death’s continental divide. There’s enough on grief’s side of the mountain to occupy me. But my cat Minya is currently in assisted living and keeps reminding me of my father’s last months. He would not like the comparison—not a cat person. She also reminds me of Atul Gawande’s insightful book, Being Mortal.
Minya requires extra help and medications throughout the day. I think she’s comfortable but she doesn’t say much, just like dad. I’m hoping she will die peacefully in her sleep, but chances are that something critical will fail, and we’ll have to put her to sleep. I think we all want to die at home with our brains sharp and undulled by drugs, but I don’t know how realistic this is anymore.
This brings me to Gawande’s book. A medical doctor and surgeon, Gawande writes about how doctors, the medical system, and nursing homes deal with end of life matters, and says they are missing the boat when they focus on the disease instead of the person.
With terminal illnesses, many of us live with hopes rather than realities, thinking there is always something more that can be done, something experimental that will magically cure the problem, or at least stop further destruction. Doctors don’t like to talk about dying with their patients because it sounds like they failed.
Doctors used to be Dr. Knows-Best, the paternalistic model of medical care, and many still are. We took the red pill because the doctor told us to. Then a shift took place and they became Dr. Information. They shared more about the medical options and made us choose one. Besides the red pill, they let us know there was also a blue pill and a yellow pill.
Now some doctors are listening to their patients and there is shared decision making. The doctor tells you about the options with the benefits and risks, asks what you like and dislike about the outcomes for each, asks what you value the most, and then you both make a shared decision for what you want. This takes more time, of course, and some doctors are too busy to listen to their patients.
What we want from doctors is all the information, guidance in making an informed choice, and the right for us to decide. If any of us knew that we only had limited time left, most of us would live the rest of our lives differently. If we had the choice between three good months of life, doing what brought us joy and pleasure, versus five months of pain from additional medical procedures that offered only marginal benefits, I think many of us would choose the three good months. But if we don’t know the options, we can’t make the right choice.
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Besides taking doctors to task, Gawande also spends time talking about retirement and nursing homes, and how the development of palliative care and hospice has greatly improved the quality of life for people in their last months.
Even if we don’t have any dire illness, what is clear is that in our last years or months we will need the help of someone else to get through each day, whether this help comes from family, live-in help, an assisted living facility, or hospice. Most of us don’t face the nuts and bolts of dying until we’re forced to, and then we have to make snap decisions out of panic or fear, and we may not make the better choice.
Nursing homes are moving away from hospital-like maintenance of people where everyone eats, sleeps, and takes pills at the same time (which was an improvement on the warehousing of the poor houses) to where people have privacy, community with others in a relaxed setting, and the right to decide when they want to get up, eat, and go to bed.
I’m a supporter of palliative care and hospice because my father benefited from both. When he could no longer take care of himself at home after mom died, he let us move him into an assisted living facility where he had his own room. He had time to wrap his life up and finish his projects. When it was time to enter hospice care, he didn’t fight us. Having been a doctor, he understood that he fit the criteria, and hospice provided enough medication to keep his pain at bay.
When you’re in hospice, medical treatments aimed at curing a disease end and the focus shifts to keeping you comfortable so that you can still do some of the things you enjoy. Not surprisingly, hospice patients with the same diagnosis as patients who continue with surgery and experimental medical treatments tend to live longer and be happier.
After a lifetime of making our own decisions, we’re reluctant to give this up when we get old. Already so much has been taken away — friends and spouses who’ve died, the physical ability to play our favorite sports, mow the lawn, chop wood, and the mental clarity to drive a car safely. We want to keep the right to make the decisions about what happens to us. But first we have to know what the choices are, and we need doctors who are willing to sit down with us and discuss them.
We think the heroic battle ends when someone dies, because for months there has been a flurry of physical activity as everyone worked to keep the person alive—family, doctors, ambulances, ER, ICU, and hospitals. Then the rushing stops, we bury our loved ones, and, after a short period of time, we’re expected to return to normal life.
Except that this is when the heroic battle of grief begins, and we are fighting to survive. We enter a place like the mountainous Mordor, in Tolkien’s Middle Earth, where Sauron’s armies and powerful forces come out of nowhere and batter us around. But because this is a battle that is fought inside, it’s hard for people to see how difficult and long our struggle is. Unless they sit down with us and listen.
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Related Links
Retiring Into the Forest http://widowersgrief.blogspot.com/2017/05/retiring-into-forest.html
Thinking Ahead About the Unthinkable http://widowersgrief.blogspot.com/2015/08/thinking-ahead-about-unthinkable.html
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