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I heard a prominent speaker talk about studies at the National Institute of Aging.  The speaker described several new large and well funded trials aimed at preventing illnesses associated with aging, such as dementia and disability.  These studies are terrific, and worthy of funding.  I was disappointed, however, that little was said about funding for studies of older adults already living with dementia and disability.  Research in prevention will not help these patients.  I asked: where is the funding that focuses on improving the quality of life for these patients?  The speaker replied that the National Institute of Nursing Research is the funding center for end-of-life research. 

Aging research has always had a strong focus on quality of life concerns, but I worry that the emphasis has shifted too far toward the “successful aging” model.  This model sets up an unreasonable expectation that if you do all of the right things (eat right, avoid smoking, exercise your body and mind) you will be able to play tennis and Scrabble until you die.  What about those patients, like the many I care for (and I suspect you care for as well), who live with cognitive impairment, disability and multi-morbidity for years?  Have they “failed aging”?  Cancer centers made the same mistake for years, with slogans like “focused on the cure” – what about those patients who can’t be cured?

Here is some empirical data that sets the table for this issue.  Tom Gill was the lead author of a terrific study published in the New England Journal of Medicine recently.  Dr. Gill has been following a cohort of older adults since 1998, and 383 of 754 died and were eligible for the analytic sample for this study.    Ability to complete basic activities of daily living (such as toileting, eating, dressing, and transferring from a chair) was assessed monthly.  Disability was defined as the need for assistance with these activities of daily living, and was rated on a scale of one to four.  Dr. Gill used some fancy statistical methods to plot disability trajectories in the last year of life.  Here are two major points from the study:

  • Nearly half of elders who died had at least one disability one year prior to death
  • There was surprising heterogeneity in the disability trajectories.  Patients with organ failure or frailty were about as likely to have no disability at least until the last 2 months of life as they were to have persistently severe disability for the entire year before death
  • Only about 40% of subjects with cancer had what we might consider a prototypical cancer trajectory, as described most prominently by Joanne Lynn and June Lunney as sudden and catastrophic disability in the last few months of life. 

Dr. Gill makes a nice point about these findings in the discussion:

“This heterogeneity in disability trajectories suggests that personal care needs at the end of life cannot be easily predicted for most older persons and raises concerns about policies that establish benefits for end-of-life care primarily on the basis of disease-specific criteria.”

Here’s the thing I’d like to come back to: nearly half of these elders were living with disability for the last year of their life.  I’m sure a substantial proportion were disabled for years, and a minority may have been disabled for decades.  Shouldn’t we focus funding on caring for those patients?  Is it ethical to focus funding on “compressing disability” until just before death, leaving “end-of-life” funding for one of the smallest and most poorly funded NIH institutes?

by: Alex Smith

This Post Has 4 Comments

  1. Very interesting post Alex!

    One thing to keep in mind—there are many different definitions of disability. The degree of functional impairment needed to be classified as "disabled" in the Gill study was quite high. Disability was defined as needing the help of another person with a basic activity of daily living. Activities of daily living are fundamental self-care activities that are essential to being able to live independently. For example, being able to take a bath or shower, get dressed, use the toilet, or get out of a chair. If you need the help of another person with any one of these activities, you can not successfully live alone. You will be dependent on a caregiver, or will need some type of long term care arrangement.

    So put another way, this study tells us that half of elders will not be independent in a very basic self-care activity for at least the last year of their life. A substantial number will have this severe level of disability for much longer.

    The need for help with help with basic activities of daily living is a relatively advanced form of disability. Before elders reach this stage of disability, they have other less severe forms of functional impairments. For example, they will be have difficulty walking short distances or up stairs, difficulty with basic housework, or be unable to manage their medicines or finances. While not as severe as ADL impairment, these impairments have profound impacts on quality of life and many would view these elders as disabled as well. If one included these less severe forms of disability, it seems logical to conclude that the vast majority of older persons will have major functional impairments for at least the last 12 months of life. Many will have substantial degrees of impairments for many years.

    So the Gill study is very important evidence that many elders have a prolonged period of disabilty at the end of life. Half are disabled enough to no longer be able to live independently for at least the last year of life. And we can presume far more than half of elders have some very substantial functional impairment for at least the last year.

    So, clearly, it is reasonable that the NIA fund research that works to prevent or delay this disability. But we also need to recognize that prolonged periods of functional impairment are the norm and not the exception for older persons. It is hard to imagine how any research agenda focused on improving the well being of the nation's elderly could not have as a major focus improving the quality of life of elders with disability and functional impairment.

  2. For the past 22 years I have been working as an RN with persons who have memory impairment such as Alzheimers and related dementia. Providing quality care improves their end of life physical status, such as keeping them ambulatory to prevent contractures, providing specialized nutrition to prevent weight loss. Then it becomes difficult for them to qualify for hospice under Medicare guidelines, although they are obviously in the end stage (aphasic, dysphagia) many family members as well as those with the disease are unable to benefit from Hospice care due to the antiquated guidelines. It is often not until they get aspiration pneumonia that hospice are able to become involved, sometimes only for a few days. It is sad that quality care can negate the support that is needed at this stage of life for those with Alzheimers

  3. The phrase that resonates with me is “This model sets up an unreasonable expectation that if you do all of the right things (eat right, avoid smoking, exercise your body and mind) you will be able to play tennis and Scrabble until you die”. What of those of use who go into our elder years with disabilities? I would hope there is as much research out there for improving quality of life as for extending life.
    I had always believed I would work as a nurse until I was 70-75. My health was good, I love nursing, and I cannot imagine doing anything else. Last year I was unexpectedly diagnosed with a large brain tumor, had surgery, and then took 6 months of rehabilitation to get back to work (dropping hours and changing shifts as well). I have some minor deficits but the question is will they become more than minor as I age (I am 61 now)? I am not alone, as our generation ages the unexpected happens (in regards to our health and ability to do things).
    I see research improving quality of life (and that includes all aspects, physical, psychological, social, and spiritual) for all elders as extremely important.

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