After reading this, be sure to read the comment from KP doc Wes Lisker.
This is for the “Unmentionables” panel today at Health 2.0 in San Francisco. Susannah Fox blogged about this now-annual panel, which gets into “the real barriers to good health — all the stuff that nobody wants to talk about but which we know is at the center of people’s lives – and the future of healthcare:
We talked about financial stress, birth control, sexually transmitted diseases,how to increase physical activity among tweens, smoking cessation, how clinicians can have an authentic voice online, and supporting overall behavior change (just to name a few).
For today’s panel she asks for new unmentionables. Mine ties in to her previous post, “Prepare.” It’s quick – please go read it, and especially note the amazing animated graphic that shows how the age mix in our population is shifting astoundingly as boomers age and don’t die. Because medicine has gotten really good at saving lives.
Health 2.0 co-owner Matthew Holt @BoltyBoy pointed out it’s even more alarming if you add in the growth in population. I decided to do that – I did some clumsy screen grabs and added some notes. Result:
1. The shift in percentage by age group:
2. Add the growth in US population, and add a blue bar on the side that shows the number of people 85+:
Who’s going to take care of all the old people??
The cost of assisted living and skilled nursing facilities ought to scare the crap out of you – as should the risks caused by the reality that people try to defer more care. I commented on Susannah’s post with links from a Boston Globe article this Sunday about disasters in local assisted living places.
Who’s going to take care of all the old people??
THANK YOU Dave for bringing up this really important issue!
If people get better help maintaining their health, we might see less disability and chronic illness in old age. But any way you look at it, we’re still collectively facing a massive caregiving challenge.
The Census Bureau released a report on people aged 65+ this past June, and it’s filled with all kinds of interesting info & data:
http://www.census.gov/content/dam/Census/library/publications/2014/demo/p23-212.pdf
I esp encourage people to see Figure 2-14 on page 43 (Functional Limitations in the Population Aged 65 and Over by Age), which shows how many older adults have practical difficulties, like problems w walking, getting dressed, doing errands, or w memory. 38% of people aged 65+ have at least one functional impairment :(
Thanks again for bring up this important issue…near & dear to my heart, as you know.
Thank you, Leslie! You’re the perfect person to join in here. Sorry for the delay releasing your comment – another 5 hour United flight with no wifi. :)
Hi Dave, on reading your post about Health 2.0’s panel discussion on unmentionables, I was reminded of this clipping, I think from the 1992 New York Observer:
The New Orphans
An employee at a Post Falls, Idaho, dog racing track discovered a foundling near a restroom at the race track on a recent Saturday night. A bag of diapers was found too, as well as a note saying that the foundling’s name was John and that he needed to be cared for. All labels had been cut from his clothing, and John was unable to provide any information about who had left him at the race track. It’s a familiar story: Someone who has vowed to shower love and affection on a helpless charge discovers that the burdens are just too great. Heartbroken, the person decides that the only alternative is to trust others to care for the loved one, who is bundled up against the cold and deposited in a public place where someone is sure to find him.
Only, in Post Falls, John wasn’t a baby wrapped in a blanket and left in a basket. He was an 84-year old victim of Alzheimer’s disease. The note said John was retired and a widowed farmer from Spokane, Wash.; he had no income and no savings, the note said, and he required 24-hour care. He was found slumped in a wheelchair. The episode speaks volumes about our times, and may well presage times that lay ahead. As the population ages in an era when health care becomes increasingly difficult to afford, middle-aged Baby Boomers, already struggling to keep their jobs and provide for their own families, are going to find themselves facing wrenching choices about caring for ailing parents. The Presidential primary races have engendered some debate about health care, but something this side of rhetoric will be needed if, when the Baby Boom generation reaches retirement age in the next quarter-century, we are to avoid becoming a nation of elderly foundlings.
The NY Times had a more detailed article, and a name for the man–John Kingery.
I think we as a nation have made some positive changes to provide for the elderly. I wish the same could be said for our care of and for the chronically and severely mentally ill, which I hope came up due to its obviousness in SF at the panel discussion. Perhaps there are some better answers awaiting.
Wes Lisker, MD
Nephrology
Greater Southern Alameda Area
Kaiser Permanente Medical Center
27303 Sleepy Hollow Avenue
Hayward, CA 94545
Wes, this caught me totally by surprise and put me into tears as I sit at this Starbucks finishing a report. What a punch in the gut.
I just identified the feeling: I feel hopeless.
What are we going to do?? How long does it take society to adjust to a massive, unprecedented demographic changes, if there’s no booming market to pay for it?
I’m not happy about the feeling but thank you for posting it. I can’t find that text online but the Times piece fills it in.
Not the best picture of the future of healthcare.
Wow, what a story from Dr. Lisker. I haven’t heard of many older people being abandoned at public spaces, but they certainly come into hospitals and emergency rooms, and sometimes stay for weeks — if not longer — waiting for “placement.”
Atul Gawande’s new book Being Mortal is being hyped as an “end-of-life care” book, but most of it is about better care for aging adults in their years of dependence. His book covers some wonderful and very important ideas about how we might make this time meaningful and purposeful. (Hint: it generally involves medicalizing less, and attending more to dignity and autonomy.)
We should also make sure that better long-term care, and care for caregivers are given serious thought at the upcoming White House Conference on Aging. Hopefully they will invite Dr. Bill Thomas, of Green Houses fame.
Thanks again Dave and Dr. Lisker for raising awareness about this topic.
On the spectrum of unmentionables, the heft of caregiving will amaze us with its power to make our nation strong and glorious if we do it well, and to leave it depleted and worn and destitute if we do not.
Some of the most powerful passages for me personally are ones where I can feel – in the most fundamental way – how close I am to that same reality – a reality that is usually unnamed, a reality that rattles around in our core waking us up in the middle of the night with fear…almost like standing on the edge of a deep precipice and feeling how just-oh-so-very-easy it would be to jump.
This passage feels like that to me: ‘Only, in Post Falls, John wasn’t a baby wrapped in a blanket and left in a basket. He was an 84-year old victim of Alzheimer’s disease. The note said John was retired and a widowed farmer from Spokane, Wash.; he had no income and no savings, the note said, and he required 24-hour care. He was found slumped in a wheelchair. The episode speaks volumes about our times, and may well presage times that lay ahead.’
Any of us in the healthcare space who aren’t thinking hard about the positive side of all this – how do we leverage the very abled and hard working and best intentioned caregivers out there who currently toil thanklessly and unsupported – are missing a critical element to ‘pivoting’ healthcare.
And any of us NOT waking up in the middle of the night in a cold hard sweat about the other end of that spectrum… one where caregivers, en masse, give up … is, likewise, missing the boat. We need to ferociously and with a fine tooth comb think of the impact of that potential on our industry – and on ourselves (one day each of us will potentially be John Kingery).
What greater Unmentionable than for each of us to start by acknowledging the very imaginable horror of the poor soul who dropped John off….sure, we could judge them (how could they do such a thing?)…but if you’ve ever been a caregiver, instead of judging them, you might feel an emotion that could be even scarier – a recognition of EXACTLY how just such a thing could happen.
This is a topic we need to call out into the light – so we can frame it and shape it together… and not just because that’s the right thing to do…but because whether we do or not, how we handle the caregiver will define the next generation.
Thanks, Alex.
> the very imaginable horror of the poor soul who dropped John off
I googled more, and learned that the father was quickly identifed. Labeled John King, he was actually John Kingery. His 42 year old daughter was Sue Gifford. Google their names together and you get a slew of results. Very sad.
She was quickly found and convicted of multiple charges. He died within a year, having been reunited with the children from a previous marriage – they’d all lost touch years earlier.
This story really hits me in Solar Plexus… In Sweden, no person with Alzheimer’s is left at a race track for someone else to take care of because there are basically no out-of-pocket expenses for healthcare. (Although my grandmother was found at a racetrack a few miles from town on one of her walks, escaping from her carehome :) ). That does not mean however, that the quality of care for our elderly is better in Sweden. We have our share of horror stories in elderly care.
But what REALLY hurt was the fear that I might become dependant on my family myself… And I don’t mean in my 80’s… Parkinson’s is a very cruel “house guest” and although I am (mostly) doing well, I know that time is against me…. How’s that for unmentionable…? That is DEFINITELY worth fighting for to me :)
What scares me about this?
I’ll BE John without accident (luck in the face of some genetic risks) or determination (keep walking, keep eating right, keep using your brain, kiddo).
After hands-on managing my parents’ care in the last 2+ years of their lives, I know the level of heavy lifting that sort of care takes. I loved my parents deeply, but I would have been completely overwhelmed if my dad hadn’t had a platinum plated federal pension, with enough money coming in every month, along with healthcare benefits, to cover their medical needs and living costs. As it was, the emotional toll was the only cost, and one I happily paid.
I’m in no such place. I have no children. I sank my life savings into my late husband’s struggling business, and never got it back. If I get an Alzheimer’s dx, I might work to amass barbiturates. Or move to Oregon …
Yeah, Casey. Somewhere last year I heard about someone who had left clear instructions: “The moment I am no longer there, I don’t want another penny spent keeping my body alive.” He meant that to include “not even food.”
As someone who has a 50% chance that his cancer might return, and who now “might live forever,” I sometimes wonder about what you might call a “partial save”: what if, someday next time around, I end up clearly incapacitated but definitely not dying?
I know I might feel differently when the time comes, but I’m also fully aware that life is full of uncertainty and I’m at peace with the idea that some things can’t be controlled so I might be surprised.
Having said that, I most certainly don’t want anyone else telling me how long my life must go on. I certainly don’t expect anyone to be bankrupted trying to keep me alive.