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• About "terminally ill"
  Joanne Lynn
  Published on: 30 April 2019

• Published on: 30 April 2019

  About "terminally ill"

  • Joanne Lynn, Geriatrician Altarum Institute

  The article assumes that discerning a category of terminally ill persons will be done fairly readily, with some minor controversy that can be ignored. This is not the case. Most of us now will die after a long period of decline, from any of a long list of illnesses and conditions associated with aging. The mean length of self-care disability for persons who make it to 65 years old is about 2 years. We built the concept of a 6 month prognosis on the experience with certain highly fatal cancers, where the usual time from onset of a clearly fatal course to death was well under 6 months. This trajectory is not the experience of persons dying with various causes of frailty, as most of us will experience. We will know that our Parkinson's or Alzheimer's or frailty (or whatever) will worsen through to death, but the timing of the dying will depend mostly on rather random events - an infection, a fall, or some such event when we have so little resilience. Another way to look at it is to try to define the statistical meaning of a prognosis of less than 6 months. Is it 51% likely to die within 6 months, or 91%, or 99%? To many people, this sounds like a silly set of questions, but the difference in the population made "eligible" for PAD (or hospice) is more than 1000-fold at each of these thresholds. And the "error rate" at 1 or 2 years is very different for different illnesses. A person who has a 51% chance of dying within 6 months from a ne...

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  The article assumes that discerning a category of terminally ill persons will be done fairly readily, with some minor controversy that can be ignored. This is not the case. Most of us now will die after a long period of decline, from any of a long list of illnesses and conditions associated with aging. The mean length of self-care disability for persons who make it to 65 years old is about 2 years. We built the concept of a 6 month prognosis on the experience with certain highly fatal cancers, where the usual time from onset of a clearly fatal course to death was well under 6 months. This trajectory is not the experience of persons dying with various causes of frailty, as most of us will experience. We will know that our Parkinson's or Alzheimer's or frailty (or whatever) will worsen through to death, but the timing of the dying will depend mostly on rather random events - an infection, a fall, or some such event when we have so little resilience. Another way to look at it is to try to define the statistical meaning of a prognosis of less than 6 months. Is it 51% likely to die within 6 months, or 91%, or 99%? To many people, this sounds like a silly set of questions, but the difference in the population made "eligible" for PAD (or hospice) is more than 1000-fold at each of these thresholds. And the "error rate" at 1 or 2 years is very different for different illnesses. A person who has a 51% chance of dying within 6 months from a neuromuscular disease probably still has a 30% likelihood of being alive at one year - and 20% at 2 years. There's a long "tail" to the survival curve. The person who can be known to have a 51% chance of dying from lung cancer within 6 months has only a few percent chance to be alive at a year. Again, I know that readers' tolerance for these statistics is slim, but consider - can you reliably categorize most people who are living with eventually fatal illnesses as "terminally ill" at the 6 month criterion? Since most of us will be in a situation that is difficult to categorize for a very long time, it seems to me that relying on the "terminally ill" criterion has become silly - for PAD and for hospice eligibility.

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  Conflict of Interest:
  None declared.

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