On Dying and Cancer

 

Atul Gawande, Being Mortal, 2014; Complications, 2002; Rana Awdish, In Shock, 2017.

Effective health care begins when patients feel their concerns are being heard and they are involved in deciding their course of treatments. Atul Gawande’s books speak of the need for patients to feel empathy from their doctors, and of the challenges that doctors face to provide the right care. He writes eloquently from the doctor’s perspective and tells stories in a narrative voice rather than using the language of clinical reports that cite case studies. Doctors and nurses find in him a kindred voice.

Atul Gawande is a medical doctor and surgeon. In Being Mortal, he talks 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.

If you have metastatic cancer and are being maintained by drugs, there comes a time when the notion of dying changes in your mind from being a possibility to being reality. From what friends have said, when you are metastatic, you live on hope, praying for an experimental drug to come out of cancer research that will keep you alive. 

Gawande says doctors used to be the benevolent 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 in medicine took place and they became Dr. Information. They presented the medical options and made us choose one. Besides the red pill, they now let us know there was also a blue pill and a yellow pill. 

Now more doctors are listening to their patients, so there is shared-decision making. The doctor tells you about each option with its different benefits and risks, asks what you like and dislike about each, asks what you value the most, and then you make a decision together about what to do. This takes more time, of course, and some doctors are too busy, or tied up in their egos, to listen, especially if they work for a business group that pushes them to handle more patients every day.

He notes that patients sometimes have to be steered away from making bad decisions because they are fearful or frustrated. If we knew that we had limited time left (and doctors need to be upfront with us about this), 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 that many of us would choose the three good months, yet some would choose the pain route only because it offered the possibility of a slightly longer life. 

Gawande says that nursing homes are moving away from hospital-like maintenance of people where everyone eats, sleeps, and takes pills at the same time (which is an improvement on the warehousing of people in 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. 

Even if we don’t have cancer, we know that at some point in our latter years, we will need the help of someone to get through each day, whether this help comes from family, a live-in person, an assisted living facility, or hospice. Most of us don’t want to face the nuts and bolts of what to do when we’re dying until we’re forced to, and then our options may be limited. 

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 because he understood that he fit the criteria, and hospice provided enough medication to keep his pain at bay. 

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.

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In his earlier book Complications, from 2002, about how even experienced surgeons, supported by the latest diagnostic technology, make honest mistakes in judgement because the human body is a complex of interconnected systems, Gawande includes a chapter that discusses who controls your body and decides on treatments – the doctor or the patient. He references a 1984 book by ethicist and doctor Jay Katz, The Silent World of Doctor and Patient. What is at play here is that treatment decisions are not just about what is medically prudent, there are also personal issues involved, and no doctor is an authority on this. Gawande says that when he was in training in the early 1990s, he was taught that doctors work for the patient.

The doctor-patient decision sharing has advanced some, but in Dr. Rana Awdish’s superb 2017 book, In Shock, written fifteen years later, she details her near-fatal experience as a patient with multiple organ failures when doctors wouldn’t listen to her as she described her symptoms with medical precision, so she pushed back and fought with them to care for her as a person and not as a case study.

After a lifetime of making our own decisions, we’re reluctant to give up our independence when we become old or are dying. We want to keep the right to make the decisions about what happens to us. First we have to know what the choices are, and we need doctors who are willing to sit down with us and listen.

(An earlier version of this was published on my grief blog in 2018.)