#588 Musings Beyond the Bunker (Monday February 20)
Good morning,
Jimmy Carter announced over the weekend that he has elected to enter hospice care, rather than undergo additional medical treatments. At 98 years of age and after multiple bouts with illnesses over the past several years, my suspicion is that this was the correct decision. Regardless of one’s opinion of the 39th president, he left a legacy both during and after his time in office.
There are two other recent news stories that resonate with President Carter’s personal choice. In Florida, doctors refused to perform an abortion on a woman whose fetus suffers from a condition that will cause it to either die in utero or live only hours after birth. The reasoning is that the doctors fear running afoul of Florida’s anti-abortion laws. In the meantime, some legislatures around the country are doubling-down on restricting a woman’s access to abortion by imposing strict penalties, including loss of a medical license, monetary penalty and prison time for doctors who are found not to have complied with the letter of the law. In many states, doctors, nurses and hospitals are loathe to act when a woman’s life might be in danger until the situation becomes acute.
There is a common link between these stories. There is a group of people in America who, notwithstanding their view may be in the minority, want to limit how we live our lives and how we end our lives. It is ironic that some of these same people speak of the sanctity of the individual, while trying to restrict individual rights.
I’ve spoken a lot about abortion rights. In a nutshell, many of the indicia of a fetal life that must be preserved are hardly scientific. They largely seem based upon religious grounds, tied less to viability and more to some vague sense of when the fetus becomes human or when there is “ensoulment.”
The religious also want to preempt questions at end-of-life. Again, people of sound mind,, with proper counseling, are more than capable of making decisions for themselves, without requiring state intervention.
End-of-life issues divide into three broad categories:
WAIVING OFF MEDICAL INTERVENTIONS
Both patients and their loved ones are confronted toward the end of life with myriad options to prolong life, often without regard for the quality of life. There is serious question one should pursue each and every possible medical intervention, regardless of age, chance of success, or negative impact on quality of life. Medical advances in our lifetimes have been extraordinary and tend to support the notion that there is a medical answer for everything. If one round of chemo doesn’t work, try another. If a 98 year old with multiple morbidities needs bypass surgery, why not do it? After all, we are in the 21st century and medical miracles can be had.
Unfortunately, sometimes there isn’t a medical solution or, if there is, it comes at great emotional, physical, and financial cost to the patient, the family, and the health care system. Further, these often have extraordinarily low odds of successfully extending life of any quality. In an effort to assuage their guilt, show that they care, or avoid being accused of “not doing enough,” people are making decisions that often strip the dying of dignity, subject them to untold pain, burden the health care system, and relegate the person to a death tied to tubes in a hospital, rather than at home.
There are so many books and articles on the subject of unnecessary medical interventions in the last months of life. But the word hasn’t been spread far enough and medical professionals need to be better at explaining the options, the physical toll of the procedure, and the relative chances of success. There are trade-offs that must be discussed. Suffice it to say that most medical professionals will tell you that the last few “Hail Mary” treatments are almost always futile, painful and costly. They wouldn’t choose it for themselves. This would seem to me an area where it is possible to really “move the needle” and help people make better informed decisions. We need better education on what end-of-life treatments are like, which hopefully can lead to better decisions.
It seems Jimmy Carter has been well advised and has made an informed decision about future care. As to the case of the pregnant woman who is being relegated to stillbirth, she similarly should be free to preserve her health (physical and mental) and terminate a pregnancy that is hopeless. But that’s an argument for another Musing…
THE CHOICE TO END ONE’S LIFE ONE ONE’S OWN TERMS
I think this issue falls into a similar analysis as electing not to accept herculean life saving measures. If a person is of relatively sound mind, can be shown not to be unduly influenced, and either (a) the end is near, (b) considerable pain lies ahead, or (c) their brain likely will slip away, they should be able to pursue their last important decision on their own terms. As a practical matter, this just means that suicide should not be a crime. I would go a step further and make its successful execution more easily achievable. While I wouldn’t want life-ending drugs freely accessible at a 7-Eleven, I think there should be a point where individuals can access the means to end their lives on their terms. I see little reason why a person with competency can’t make this decision.
PHYSICIAN ASSISTED SUICIDE
This is the most problematic, given the competing interests of physicians—to provide medical care to people and not to cause harm. But if all the doctor is asked to confirm the patient is of sound mind and then simply follow the patient’s carefully considered instructions, it should be allowed. Unfortunately, we live in a world where we increasingly apply the opinions of legislators (as in the case of abortions), based, I believe more on religious conviction than on medical realities or individual choice. I’m not sure how this ever can be implemented in the current political environment, as doctors currently legitimately fear criminal reprisal or loss of their license for performing otherwise medically warranted procedures
SOME STORIES
Because so many people wrote in with their own experiences or opinions on end of life issues, I thought I would share a few, together with one of my own:
Diane Feldman:
“When my dad was diagnosed w pancreatic cancer in July (it had already metastasized to his liver and one lung), we elected not to put him through treatment. We knew what the eventual result would be, and rather than put him through grueling and weakening days, we spent five beautiful, connected—and sometimes sad—months with him at home, in his own house. We were with him every day, every step of the way. We held him as he took his last breaths. It was a blessing and a privilege. There were moments when we questioned whether or not we should've tried treatment - but reading your words, and Dr. Murray's words about doctor Charlie, somehow validates the decision we made to let dad live through the rest of his days sans drugs and interventions.”
Brad Mindlin:
I remember my paternal grandmother when she came to visit from Montreal. She was in her 90s. She looked terrible. My dad, a doctor, rushed her to his best friend who was her doctor (our entire family’s doctor). He took x-rays and saw that all lobes of her lungs looked like they had masses in them. He wanted to do lung biopsies. They both knew it would either be metastasized lung cancer or a terrible pneumonia. My dad slowed him down. Instead of doing an invasive procedure with risk, my dad suggested putting her in the hospital with strong antibiotics. Then take another set of x-rays a few days later. If the masses in the x-rays shrunk, clearly the antibiotics were working and it was pneumonia. If not, cancer. But, if cancer, they were not going to do surgeries, chemo or radiation on a 90+ year old. Just to make her comfortable. There are many stories like this.
I often say, when it comes to medical care, that our technology and ability out way our compassion and common sense.
My story:
My father lived a life of love, accomplishment, and meaning. Until he hit 90 years of age, everything was going pretty well. There were, of course, the signs of physical and mental decline, but he was still the guy I knew and loved. Ninety was a tougher year. But things really accelerated after his 91st birthday.
I received a phone call from his caregiver, relating that he had passed out and was taken to UCLA. I left to meet them. I was told by the nurse that they were going to run some tests. When I saw my father, he greeted me and, a bit perplexed, asked “why am I here?” After I was there for a bit, he said, “I want to go home.”
So I called for the attending physician. I asked “what tests are you proposing to do on a 91 year old man in declining health?” Then I asked, “and if these tests indicate that surgery is called for, will you really put this man through that amount of pain, the risk of death on the table, and an unlikely positive outcome? And, to what end?”
The doctor was taken aback and confirmed all I felt. She said the tests really weren’t needed, and if surgery would be indicated, it would likely be significant for a man of his age. Then she smiled and said, “you know, I don’t have many of these conversations with patients and families. It is refreshing that we’re speaking frankly right now.
Having spared my father from further poking, prodding and testing, I said, “Dad, we’re going home now.” He responded with a huge smile. We brought him home, brought him his favorite decaf mocha and spent some time together. We were able to enjoy a couple of months together, before he began sleeping more and, just like that, he was gone.
I wonder how many families would be well served with greater counseling when a relative is facing excruciating end-of-life treatments. It would be great if they could instead be offered the option of a quiet exit at home. And it would do our healthcare system well, as well.
HAVING AN INCURABLE DISEASE
From a friend:
“As someone with a chronic and progressive disease that has no medication or therapy and leads to a conclusive outcome this topic is something I think about every day.
The one thing I have come to believe is society has distanced the dying process so far from being a common experience for most of us that fear has filled the vacuum left by lack of experience with something that at one time was part of common life.”
LIFE AND DEATH
I’ll close with the words of Brad Mindlin: “Remember, that everyone dies. That being said, not everyone has lived.”
Have a great day,
Glenn
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