Skip to main content

The last year of life in the oldest-old

There is a very interesting study in the January issue of the Journal of the American Geriatrics Society that characterizes functional status during the last year of life in the very old. The study illustrates a point we have recently stressed on GeriPal: The vast majority of older persons will have some degree of significant disability in the last years of life. This is in contrast to the popular perception that disabiity can be prevented if one does all the right things. Encouraging good health habits is a very good thing. However, suggesting that if you become disabled, it must be because you did something wrong is a very bad thing.

This clever study, led by Jun Zhao of the University of Cambridge in the United Kingdom, leveraged the Cambridge City Over 75 Cohort Study. This longstanding study originally enrolled a representative sample of persons over age 75 and has been following them for over 2 decades. This analysis examined the 321 subjects who died after the age of 85, who had interviews in the last year of life. On average, these subjects were interviewed 6 months before death. Because these 321 subjects are broadly representative of older decedants in Cambridge, the results provide important insights about the functional status of persons over age 85 in the last year of life. Here are some key selected findings:

In the last year of life, the overwhelming majority of persons over the age of 85 have major functional impairments. Among those age 85-89, in the last year:
  • 50% of persons needed the help of another person to bathe
  • 30% needed the help of another person to shower
  • Only 43% could walk one block, and only 19% could walk around town
  • 57% needed help preparing meals
  • 76% needed help doing housework
  • 86% needed help shopping
  • 34% needed help taking their medicines
  • Putting this all together, 59% were disabled in basic activities of daily living (ADL). 26% could do all their ADL independently, but needed help with instrumental activities of daily living (IADL). Only 15% did not have disability in ADL or IADL. (note: ADL refer to basic activities essential to living independently such as bathing or dressing. If one is disabled in ADL, one generally can not live successfully without help. IADL refer to higher ordered activities important to well being such as housework or meal prep)
Rates of late life disabilty escalate markedly as people approach their 90's. It is rare for persons in their 90's to not have major disability in their last year of life. For example:
  • 56% of persons needed help getting dressed
  • 76% needed help bathing
  • 90% needed help preparing meals
  • 87% needed help with housework
  • 97% needed help shopping
  • 64% needed help taking medicines
  • Only 6% could walk about town. Only 22% could walk one block
  • Putting this all together, 85% had a disability in a basic activity of daily living (ADL). 11% were independent in ADL, but had a disability in an instrumental activity of daily living (IADL). Only 3% (ie, about 1 in 30), were free of disability in either ADL or IADL.
So, does this mean quality of life is bad at the end of life in older persons? ABSOLUTELY NOT. It would be interesting to know what the elders felt about their disability, but based on their self-rated health, it seems many adjusted quite well. 61% of those 85-89 said their health was good or better. In the far more disabled 90+ year olds, 67% rated their health good or better.

It is interesting that many would be distressed to learn that living to a very old age is accompanied by an extremely high likelihood of being disabled for an extended period of time towards the end of life. However, I suspect the majority of elderly adapt to disabilty and are satisfied with their lives.

"Compression of morbidity" is a good thing. However, the common perception that if one just does all the right things, one will be free of disabilty for one's whole life is a myth. I wonder if some of the societal attitudes towards disabilty reflect ageism and lack of respect towards the elderly. Many notions of "successful" age would view the elders in this study as "non-successful." I hope that many of the elders would beg to differ.

Our discipline of Geriatrics needs more balance in its research. We have done great work elucidating the causes and risk factors for disability and developed novel interventions that may delay the development of disabilty. This is important work that needs to progress. But we need to balance this with much more research that examines the quality of life of elders with disabilty, coupled with interventions to improve the quality of life of disabled elders and their caregivers.

As a society, we need to talk much more about late life disabilty. Of course we should encourage healthy lifestyles that may delay disabilty, but we really need to stop suggesting that those who are disabled somehow did something wrong. Over the coming decades, the number of elders who are blessed to live into their ninth and tenth decades will increase dramatically. We need to think about how to better structure health care and living environments to promote the quality of disabled elders.


Comments

Patrice Villars said…
Great post. We have such a deep seated rejection of getting older and (God forbid) dying, that we fail to see these are natural processes. I think the blame game (you didn't eat the right foods, exercise the right way, have the right 'fighting' attitude)reflects our fear of our own disability and death. It is frightening to think about who is going to be able to care for us and at what cost if we are 'lucky' enough to age 'successfully'. We want it all - not to die young, not to get old, and not to be cared for by others.
Great post, Ken - It does clarify the importance of the things we were discussing in those prior NY Times-inspired interchanges regarding accepting the reality of disability and even the "malignant, metastatic adulthood" concept http://www.jhartfound.org/blog/?p=1236.

As always, the human diversity in aging is one of the hardest things to wrap one's mind around. Some will be very healthy into great age but most won't. Prevention and health promotion are good things, but people shouldn't be blamed when it doesn't work for them.

Before hearing of this paper, I have used Joanne Lynn's taxonomy of deaths as my rule of thumb: 50% of people have several years of disability before death, relatively few have quick deaths without illness.

Now all I have to do is find my current issue of JAGS.
suzanne said…
The distances we have not traveled: illness, disability, and age have long been held and treated as moral flaws. Early in the AIDS crisis, folks were pressured to rehearse their affirmations; overcoming cancer is still about positive attitude and strident self-advocacy; want to age without debility: walk several thousand steps, drink a glass of wine and be a good patient--anything less is non-compliant, self-destructive willfulness! Do we live with our bodies or against them.
Dan Matlock said…
Great post. Your last paragraph really summarizes the challenge well. The problem is really a societal one. Viewing late-life disability as something other than failure is (unfortunately) a counter-culture viewpoint. As the baby boomers age and the dependency ratio gets lower, I wonder how this viewpoint will evolve.
It is really heartbreaking that when you necessitate your loved ones and they are not close to you. But you should not feel dishearten. We are always in attendance to hand round you. Our association works for Elderly Care in South Atlanta. For more questions you can visit us.

Popular posts from this blog

Dying without Dialysis

There is a terrific article in this weeks Journal of Pain and Symptom Management by Fliss Murtagh of King's College in London about the epidemiology of symptoms for patients with advanced renal failure who die without dialysis.  This study is important because while we know that patients with advanced renal failure have a limited life expectancy and the average age of initiation of hemodialysis is increasing, we know little about the alternatives to hemodialysis.  Specifically, we know nothing about symptoms affecting quality of life among patients who elect not to start dialysis (so called "conservative management" - is this the best label?).  This article provides a terrific counterpoint to the article in last years NEJM showing that nursing home residents who initiated hemodialysis tended to die and decline in function (see GeriPal write up here). 

The study authors followed patients with the most advanced form of chronic kidney disease (the new name for renal failu…

The Dangers of Fleet Enemas

The dangers of oral sodium phosphate preparations are fairly well known in the medical community. In 2006 the FDA issued it’s first warning that patients taking oral sodium phosphate preparations are at risk for potential for acute kidney injury. Two years later, over-the-counter preparations of these drugs were voluntarily withdrawn by the manufacturers.  Those agents still available by prescription were given black box warnings mainly due to acute phosphate nephropathy that can result in renal failure, especially in older adults. Despite all this talk of oral preparations, little was mentioned about a sodium phosphate preparation that is still available over-the-counter – the Fleet enema.

Why Oral Sodium Phosphate Preparations Are Dangerous 

Before we go into the risks of Fleet enemas, lets spend just a couple sentences on why oral sodium phosphate preparations carry significant risks. First, oral sodium phosphate preparations can cause significant fluid shifts within the colon …

Does “compassionate deception” have a place in palliative care?

by: Olivia Gamboa (@Liv_g_g)

There is broad consensus in the medical community that lying to patients is unethical.  However, in the care of patients with dementia, the moral clarity of this approach blurs.  In her recent New Yorker article, “The Memory House,”  Larissa MacFarquhar provides an excellent portrait of the common devices of artifice, omission and outright deception that are frequently deployed in the care of patients with dementia.  She furthermore explores the historical and ethical underpinnings of the various approaches used in disclosing (or not) information to patients living with dementia.

Ms. MacFarquhar introduces the idea of “compassionate deception,” or the concept that withholding truths, or even promoting outright falsehoods, is a reasonable and even ethical choice for those caring for patients with dementia.  To the extent that it helps a person with dementia feel happier and calmer, allowing them to believe in a gentler reality (one in which, say, their spo…