HCR -- How Doctors Die

John Ballard

This is a recycled post from December, 2011. I got an email notice that someone left yet another comment at The Health Care Blog where it also appeared.  Go there and check out a string of approving comments left by health care professionals. 

Read the whole piece, but here are a couple of snips.

Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient's five-year-survival odds-from 5 percent to 15 percent-albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn't spend much on him.

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....Many people think of CPR as a reliable lifesaver when, in fact, the results are usually poor. I've had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who'd had no heart troubles (for those who want specifics, he had a "tension pneumothorax"), walked out of the hospital. If a patient suffers from severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal, while the odds of suffering are overwhelming. Poor knowledge and misguided expectations lead to a lot of bad decisions.

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Several years ago, my older cousin Torch (born at home by the light of a flashlight-or torch) had a seizure that turned out to be the result of lung cancer that had gone to his brain. I arranged for him to see various specialists, and we learned that with aggressive treatment of his condition, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me.

We spent the next eight months doing a bunch of things that he enjoyed, having fun together like we hadn't had in decades. We went to Disneyland, his first time. We'd hang out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital foods. He had no serious pain, and he remained high-spirited. One day, he didn't wake up. He spent the next three days in a coma-like sleep and then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.

Other links to know about.

?The One Slide Project

?Engage with Grace

?Aging with dignity

?Jim Cooper's Story (video)

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Dr. Murray participated in a discussion of death and dying at a recent event reported at Zacalo Public Square. (This post is being recycled thanks to Dr. Murray's ongoing participation in events such as this. It's easier for me to keep important links at one place than have them lost in the archives.)

?Going Gentler Into That Good Night
A Discussion of How Doctors-And the Rest Of Us-Prepare For the End

At a panel sponsored by the California HealthCare Foundation at MOCA Grand Avenue, experts in healthcare and end-of-life issues let a crowd in on the secrets that doctors-perhaps unknowingly-are keeping from patients and their families.

Dr. Ken Murray, author of "How Doctors Die," traced Americans' lack of familiarity with death to the 1950s, when the death industry was commercialized and parlors, where dead people were laid out for wakes, were renamed living rooms. He added that, while medicine has made incredible advances in the past six decades, the way people experience healthcare in television and movies offers a false sense of the power of intervention.

San Jose Mercury News reporter Lisa Krieger, the evening's moderator and the author of a series of articles about the cost of dying in America today, asked the panelists what two or three things the audience needed to take away from the evening's conversation.

Judy Citko, the executive director of the Coalition for Compassionate Care of California, said that we should start advance care planning now. If you are 18 or older, you should have an advance directive that includes treatment preferences and values, she said. At the very least, you should name a surrogate to speak for you. This can be tricky-since the people you love may react to your illness differently from you-but the job of the surrogate "is to stand in your shoes," no matter how emotionally difficult that may be.

What questions, asked Krieger, should a surrogate, or other friends and family members who are making decisions for someone who's very sick, be asking doctors?

Murray said that the best scenario is to have the patient's long-term primary care physician-someone he or she trusts-on hand. He also said that it's less helpful than we think to ask a doctor, "What would you do, or what would you do if it's your mother?" Physicians are wary of imposing their own value system onto the patient. Instead, asking clear-cut questions and demanding answers is critical.

There is more at the link, including a link to an hour-long video of the conference which is well worth the time for anyone seeking more information. Dr. Murray pointed out, for example, that the modern funeral industry has made death and dying a forbidden topic for most people. Not very long ago caring for someone who died was the responsibility of those who cared for them in life, typically but not always family members. 

The funeral industry even had an effect on architecture -- the vanishing of the parlor. Old movies and plays would have us believe parlors were only used for romantic liaisons, but they also served as a separate room where the deceased were kept prior to the funeral and burial services, and where wakes were observed. Dr. Murray pointed out that "living" rooms which were larger and separate, were not named by accident. 

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I have two contributions to add not mentioned above. First, regarding the selection of an agent for medical decisions in the event one is not able to communicate, most sources presume that will only be one person. In a gerontology class I took it was pointed out that it's better to have more than one, perhaps as many as three to five people -- all of whom are informed and listed with their permission and know where your documents are kept. Having more than one agent expedites medical decisions in case whoever is first on the list is not immediately reachable for whatever reason. Instructions should include the list and sequence to follow should the need arise. (I also heard that in Georgia the same person who has legal POA cannot also, for legal reasons, be named agent for medical decisions.)

Second, with increased Internet and social media access nearly everybody has a number of Internet connections, often with individuals or institutions whom they have never met. It's a good idea to make a list of sites and passwords that can be made available to a trusted, competent person willing to follow up as appropriate in each case. Should someone be either dead or in a medical condition that interrupts their Internet access both courtesy and ID security dictates someone should follow up.