Paul Kostick’s DNA was under attack and his fate was sealed. Forces beyond his control were hacking large pieces of genetic material off the ends of his chromosomes. His telomeres (a bit of junk DNA that protects other DNA whenever his cells divide) were wearing down. In patients with this amount of telomere destruction, the average life expectancy is around five years.
Should Kostick’s doctor tell him how long he has to live? Not how long as in: “You are going to perish on February 26, 2017.” Instead, I’m asking whether this physician, when discussing the pros and cons of colon cancer screening with Kostick or when talking about the risks and benefits of major surgery, should make sure Kostick knows that there is a good chance he won’t live long enough to experience the benefits of these procedures.
At first glance the answer to my question is obvious: of course doctors should discuss life expectancy with terminally ill patients when they face important medical decisions. And yet, Kostick’s doctor never mentioned this terminal illness to him. In fact, most doctors taking care of people with Kostick’s condition are hesitant to discuss prognosis with these dying patients.
If this were the 1960s, such silence would not be so surprising. Surveys back then revealed that more than 90% of doctors routinely withheld cancer diagnoses from terminally ill patients, out of concern that such news would cause patients to suffer. Better to comfort them with evasions and out-and-out lies than to burden them with the truth of their imminent demise.
This silence largely ended in the 1970s, a decade that saw the rise of the empowered patient—the dawn of the bioethics movement. Doctors realized that they could no longer keep patients in the dark about their health and healthcare. “Informed consent” became the law of the land—as in: if you don’t inform your patients about their situations before consenting them for interventions, you will be held legally responsible!
So why are patients like Kostick being left in the dark?
Because they are old! Kostick has a life expectancy of around five years because he is 87 years old. His telomeres are falling apart not as a result of a rare disease, but as a consequence of his longevity.
Kostick’s physician probably feels no need to discuss his terminal illness because that “illness” is old age. Kostick surely knows that the end is approaching. But when Kostick asks for a screening colonoscopy, a test that carries small but real risks of serious side effects, shouldn’t his doctor talk about whether that test makes sense at his advanced age?
When the doctor notices that Kostick’s cholesterol is mildly elevated, should he prescribe a cholesterol pill without discussing the way Kostick’s age shifts the cost-benefit ratio of this medication?
Or should the doctor simply defer any cholesterol testing for patients like Kostick without discussing her reasons? Is it worthwhile spending any amount of routine clinical appointment time discussing cholesterol screening when so many other issues loom larger in Kostick’s life?
What do you think?
Peter Ubel is a physician, behavioral scientist and author of Pricing Life: Why It’s Time for Health Care Rationing and Free Market Madness. He teaches business and public policy at Duke University. Peter’s new book, Critical Decisions will be available in the fall of 2012. You can follow him on his personal blog.
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