Atul Gawande is a surgeon at Brigham and Women's Hospital and a thoughtful and compelling writer. In today's New York Times, he discusses life in nursing homes and the deterioration of spirit that occurs among many residents in this setting. Referring to a person he met, who picked her own high quality nursing home, he says:
The things she misses most, she told me, are her friendships, her privacy, and the purpose in her days. She’s not alone. Surveys of nursing home residents reveal chronic boredom, loneliness, and lack of meaning — results not fundamentally different from prisoners, actually.
Along these lines, a friend's mother left behind a letter with this advice to her family after spending several of her last years in a nursing home (yes, also a high quality one).
Try to find an alternative to nursing homes. People are segregated by age and they have very little in common. I have found them a terrible home. I’ve done the best I could but that’s not good enough.
In the "old days", elderly relatives would have lived with their extended families. That chapter is closed for most people in the US. In lieu of that, Gawande refers to "a small band of renegades" who have created alternatives aimed at replacing institutions for the disabled elderly with genuine homes.
These are houses for no more than 10 residents, equipped with a kitchen and living room at its center, not a nurse’s station, and personal furnishings. The bedrooms are private. Residents help one another with cooking and other work as they are able. Staff members provide not just nursing care but also mentoring for engaging in daily life, even for Alzheimer’s patients. And the homes meet all federal safety guidelines and work within state-reimbursement levels.
They have been a great success [and they are building these in] every state in the country with funds from the Robert Wood Johnson Foundation. Such experiments, however, represent only a tiny fraction of the 18,000 nursing homes nationwide.
I don't pretend to know the solution to this problem, but bravo to Dr. Gawande for bringing the issue to a large audience.
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I agree with you that Dr. Gawande is a terrific writer. I am currently listening to his audio book 'Better'. Thanks paul for your recommendation on Jerome Groopmans book 'How Doctors Think' sometime ago in this blog. Two great medical writers from Boston.
This is an interesting model of care, promoted by the same gentleman who earlier had been promoting the "Eden Alternative." For further information, please check out, on my blog, a post on the Green House Model and a post on current Medicare and Medicaid rules on financing of nursing facility stays.
I heard the CEO of the Masonic Health System of Massachusetts speak recently about his organization's commitment to the principles of the Green House model of care and his intention to convert an existing long term care facility to the Green House model, thus joining one other Massachusetts project on the drawing board (the Chelsea Jewish Nursing Home).
While this model is extremely appealing, I am concerned that it may not be entirely appropriate for most nursing facility residents, who are short-term residents: in for rehabilitative services, and not there for the long haul. The model is a good one for facilities truly providing long-term care but, thanks to a whole host of factors, most nursing facility beds are dedicated to another kind of resident.
Hi Paul,
About 7 years ago I was faced with potentially having to find an alternative living arrangement for my mother in Wisconsin. I was relieved to find that Wisconsin offered the residences Gawande refers to....they were as close to "home-like" as you get without it really being your home. Small, modern, private rooms, sort of like a "grown-up dorm." That state's Medicaid program recognized those residences as legitimate "long term care" placements. A great alternative to traditional nursing homes for those not so mentally and/or physically disabled to need intensive adl and medical/nursing services. One caution: at that time, (I have had no need to up-date my knowledge so don't know what is ahppening today) the same program that recongized these designed-to-be-residences also accepted "converted" private home placements and I saw some real nightmares in my quest for a suitable place for Mom...homes with bedrooms partitioned to make them "private" so there was barely room to move, "residents" left on their own in shabby living rooms to stare at a T.V., etc., etc. Done right, the type of residence referenced is a great addition and alternative. Not closely supervised, it could be just another variation on a nightmare.
My mother is in a very high quality nursing home under the care of a religious order who are loving and respectful. Nonetheless, they do not have the staff necessary to give personal attention to each resident. Because my mother tends to wander and is prone to falls, she has to sit in the hall all day long so that she can be in view of the nursing station. There is no entertainment other than watching the patient care attendants come and go. Her Alzheimer's is too far advanced for her to read, and the television is in her room, which she is not allowed to stay in without supervision. They now have her on pureed food--and I think that is becuase it is easier for the staff not to have to cut it--not because of my mother's teeth or digestion. All in all, it is very disheartening, but I feel I don't have a choice because she requires a lot more care than I could provide in a home setting. The Green Houses sound like the right way to go, although I doubt that severely demented patients could be cared for there.
Gawande wrote a similar essay in the April 30th issue of the New Yorker. It's a fantastic read:
Annals of Medicine: The Way We Age Now.
http://www.newyorker.com/reporting/2007/04/30/070430fa_fact_gawande?currentPage=all
We have been in charge of our mother's welfare for almost 20 yrs, the last 11 very intensively. She suffers from dementia, but not Alz. She has been in a medium-sized assisted living facility (50 residents), but they made a bum call when she was found on the floor that led to a hosp horror show. We moved her to a big place in a locked memory unit. She was sexually assaulted. We zipped her out of there and into a private home accredited by the state--2 residents cared for by a Filipino family. This is the best yet, but we still pop-in several times a week unnanounced. We take her to all doc appts, out to meals, etc. No place is ideal...Certainly our homes with our animals (she hates animals) are not even a possibility. I left my life back East and am now trapped in AZ as a non-driver. Never foresaw any of this. This is a theme of our time...we lead our kids' lives (one at home still) and our parents'. Ours? In the cracks.
when my great aunt was dying, her daughter brought her into her own home, quit her job, and between the children and great grandchildren they worked in shifts to care for her. hospice visited constantly, helping to administer medication. she lasted over a year, was cared for entirely by family (three of whom have nursing experience) and died in the bed that my cousin debi spent her childhood in.
once when my cousin melissa was changing her bed after an accident, my great aunt started crying. "i am so sorry i messed the bed..." melissa laughed "oh nanna-- you changed my pants and bed so many times... it's high time i paid you back."
my husband is a speech therapist working almost entirely with elderly patients. so many of the people he cares for have family that want to take them in but cannot do what my aunt did for her mother. Doug did an informal poll for his own curiosity.
it wasn't money that was the obstacle... people had the money to pay for the nursing home, they had the money to pay for a lot of things...
it was the concept of cleaning up bodily waste from their adult relative that they didn't want to deal with.
i'll remember that forever, and my cousin melissa's sweet heart in caring for her great grandmother.
i wish we could all do such things... i know right now i have the room in my home if my parent(s) needed it. quitting my job would be a hardship... but with a huge supporting extended family, i could see doing it.
sorry this is so long and rambly. maybe i should do my own journal entry on the topic...
This is the usual wisdom about nursing homes, and, yes, I think we need other alternatives. Nonetheless a physician interviewed on Frontline's 2006 program, "Living Old," stated that he has had patients who have thrived in that environment because they are no longer isolated from other people.
A very good point, and I am glad you took the itme to post it. Thanks.
I think the feelings of helplessness and having no purpose in life are unimaginably painful after a life raising a family, owning a home, having a career / job outside the home, cooking, cleaning, entertaining, etc. How can anyone easily transition from that to a life of just existing from one day to the next? My mother was blessed with good health until she was in her mid-80's and then ... the unthinkable. The best thing I can do for her is to make her feel purposeful and valuable to me, continue to ask her advice, continue to value her opinions, continue to make her feel loved. My mum is getting excellent care, but she does fall into the category of being in a nursing home where she sits in a hallway, can't read anymore and passes the time in her own way. She is a very private person and has had to transition into a world with absolutely no boundaries. Very hard for her. Thank you for this post. It does help to share with others going through a similar experience and to know that in our own way, we are doing the best we can to care for our elder loved ones. Still, I am always just a breath away from tearing up or falling apart from the heartache.
To Paul Levy: You sound like a wonderful, caring person, I love your blog, keep up the great work you do.
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