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Tuesday, February 17, 2015

Nursing homes: what are we paying for and what are the alternatives?

The US population is getting older. There are about 9 million Americans who are over the age of 80 and about half of them need some kind of help in the activities of daily life. About 1.3 million Americans live in nursing homes. The average yearly cost to live in a nursing home is over $80,000, but that varies hugely by location. In San Francisco, the average cost of a year's stay is $144,000. In my state, which is notoriously cheap, if you live in a small town away from the big universities and population centers, it would cost closer to $68,000. This is quite the deal, but still more than double the average yearly salary for a working person. The total costs associated with nursing homes and assisted living in the US was $255.8 billion in 2013, according to the Medicare data.

Expensive, and...
What do you get for all that money? It varies, but generally nursing homes are older buildings and rooms are shared and often cramped. There is a hospital bed for each patient, sometimes a mattress on the floor if the patient is at risk of falling out of bed due to being demented and wakeful at night. That sounds a little barbaric, but it is actually a great idea when compared to bed rails or pads on the ground next to the bed, which can just make things worse. There is usually a shared private bathroom, with toilet and sink, sometimes a shower. There are 3 meals a day and snacks, like ice cream or pudding. There is a registered nurse available around the clock, but he or she may be responsible for 50 patients or more. There are licensed practical nurses available as well, and the ratio is a bit better for them, maybe 1 per 5 patients. There are nurses aids, less well trained, who help with dressing and toileting and cleaning up messes, and are spread pretty thinly. For-profit nursing homes, which make up the majority, have worse staffing ratios than state or non-profit facilities, and better staffing ratios correlate with better care and outcomes. There is often physical therapy available in a nursing home to help patients walk better or have less pain or regain function after an injury. Some nursing homes have speech therapy specialists who help improve swallowing and help patient learn to communicate after strokes. There are often activity directors who devise ways to make the time pass more pleasantly with games or crafts or music or movies.

People often end up in nursing homes when their health takes a sudden downturn, such as after an illness or injury that leads to hospitalization. After an acute illness older people are often profoundly weak and have lost the self confidence to return to their homes. Injuries such as fractures of the leg or hip may require that a person not bear weight, leaving them stuck in a wheelchair, needing help to get to meals or the bathroom. Many of these problems are temporary, but sometimes they are part of a cascade of events leading to no longer being able to function independently. When patients no longer require hospitalization, they may be transferred to a nursing home or "skilled nursing facility" (SNF or "sniff," for short.)

You can't always get what you want...
My patients tell me that nursing homes are, in general, terrible. Some patients are grateful and satisfied but most really dislike living in nursing homes. A large proportion of residents can't express themselves well enough to have an opinion that can be heard. What the ones who talk about it say is:

1. The food is bad. Usually it is mass produced and bland. In any case, people like their own special ways of making food, and this can't happen in an institutional kitchen.

2. It takes a really long time for a nurse or aid to come when a resident needs them. If this is to use the potty, often they are wet or soiled by the time help arrives, then they feel sorry and embarrassed. I think there is such shame attached to this that I only hear about a tiny fraction of it. If the problem is pain, the resident is often in such a state when the relief arrives that medicines don't work as well and they become irritable, alienating staff.

3. Mistakes are made. One of my patients, who was labeled a trouble maker, told me that 30% of the time he received his medications, there was some kind of error. Not necessarily large, but stuff like forgetting the aspirin, or giving him a whole rather than a half pill of something. The vast majority of mistakes like this would go completely unrecognized, not even showing up as a cause of morbidity, since most nursing home residents don't check to make sure their medications are correct.

4. Other residents are loud or rude or are just so sick that being near them is demoralizing. It would be nice if we could all be compassionate to our less fortunate or less polite peers, but many people need refuge, especially when they are old and vulnerable.

Like being in a sub-optimal summer camp as a child, people usually do adjust to living in a nursing home, but a large proportion of them, when they have returned home, tell me that they do not want to go back.

How about DIY?
It seems crazy that it should cost so much to live like this, when many nursing home residents were able to survive on a tiny social security check before they were admitted. What if they just arranged for the important part of this care without going to an actual nursing home? It sounds like a great idea, but the math doesn't work out that well. The average nursing home cost of $80,000 a year is what we have to beat. If we just start with the 24 hour care, it costs over $80,000 to pay someone $9.50 an hour for 24 hours a day, 365 days a year, and that isn't even a living wage. Compared to this cost, stuff like rent and food barely need mentioning, but $1000 a month for rent and utilities plus $400 a month for penny pinching groceries adds about another $17,000. Sharing the expense with a spouse starts to be comparable to the cost of a nursing home, but reliable home help that will not call in sick or smoke or mismanage money is extremely hard to come by. 

People have, for years, come up with creative ways of dealing with the process of aging. Before going further, I should mention the fact that humans have devised state and federal programs, Medicaid and Medicare, to help pay nursing home costs, since few seniors have enough money to pay their own nursing home costs. Medicare pays a large proportion of nursing home costs for patients who are expected to return home, but need a relatively brief nursing home stay after a hospitalization in order to do so. Medicaid will pick up the bill for nursing home costs when a senior can prove that they no longer have the resources to pay their own way. But there are also non-nursing home options that many people make work.

Living with family
As long as humans have existed, old people were taken care of by their extended families. This is shockingly inexpensive, since the very old don't eat much and already have all the clothes they need and rarely have expensive hobbies. Unfortunately not everyone has an extended family, and American lifestyles are not focused on having someone with time on their hands hanging out at home all the time. Even when family is available, things can go very wrong. About a year ago I saw a pair of sisters, one 96 and the other 102, who lived with their son in an apartment. They were hungry, thin and dirty and, according to the emergency medical crew, slept on a mattress together without sheets and just a grubby blanket. Their son wasn't cruel or abusive, just not much of a homemaker. There was shock and outrage among our hospital staff, but the sisters eventually went home with him because that was what they wanted.

On the very much more jolly end of the spectrum, one of my patients took her mother out of a perfectly fine nursing home to where she had prepared a room at her monastery. Her mother became more active and always had a novice assigned to her, who learned compassion by practicing it. She ate healthy food and complained about it, but she had complained worse about the nursing home. She got healthier and needed less medication. She eventually succumbed to old age, with hospice attending her at the monastery. 

Adult Family Homes
Since staffing is the biggest cost associated with care of the very old or disabled, adult family homes have arisen so that the cost can be shared among several clients. These are large private homes that have 24 hour staff, some of whom live there, and care for several older adults. Some of these are great. Near my home, there is a family home care place run by a family from Kenya, and I've been told that they are wonderful. One of the great benefits of a place like this is that staff turnover can be quite low. If staff live in the home or are close friends of the owners, they really get to know the residents and they get good at what they do. Also there are a smaller number of clients to take care of than in nursing homes, which means that care is more personal. Some of these places have come into the spotlight for providing terrible care, which is made more possible by there being less regulatory oversight.

Foster care
Adult foster care homes usually have one or very few clients, and caregivers need to have the basic knowledge necessary to care for their clients, but don't need to be nurses. If the chemistry is right, these can be great. I don't know of a clearinghouse for foster care providers, and in my experience these arrangements tend to happen when somebody knows somebody who is willing and able to do it.

Just a little bit of help at home
For people who don't need 24 hour care, staying at home and having help come in is much more affordable. Medicaid will even pay for this, in some cases. Some people remodel to make room for a roommate  and can trade rent for care duties. The patients of mine who have done this often have a long lasting solution that also can solve the problem of being isolated. They do, though, need to have contingency plans for vacations and illnesses and such. 

Out-sourcing--care tourism
What about out-sourcing? There are cultures that do personal care better than we do in the US, and at a much lower cost. Thailand, for instance. The last time I was in Thailand, there were professional massage places everywhere, and they cost maybe 5 or 10 dollars. Service in hotels was amazing and the staff actually seemed to enjoy doing their jobs well. The food was delicious. As it turns out, there are at least 2 nursing homes in Chiang Mai which are geared toward clients from Europe and the US. The very old in Thailand, and there are increasing numbers of them, are almost always cared for by their families, though there are a some facilities that cater to Thai seniors.  One of the ex-pat focused nursing homes is called The Care Resort and is pretty high end, with multiple levels of care and big beautiful grounds and outings to see elephants, or so it appears on the website. I can't find anything about cost on the website, but an article about it in the UK Daily Mail says that a year's cost is about 21,000 British pounds, which is about $35,000. Another such nursing home, which appeared on the website actually to have some Thai clients, is at the McKean Rehabilitation Hospital, which was a home and hospital for lepers when I spent time there in the 1980's, after finishing my residency. It was a beautiful place then, a bit outside of the city, with shade trees and open wards and a wonderfully creative approach to all aspects of leprosy as a chronic disease, but not a death sentence. The staff was cheerful and caring and there was an affiliation with the Presbyterian Church. The website makes it look fine, but not opulent. No prices are mentioned. The extended grounds still house some aging patients with leprosy (a disease which, despite its reputation, is not very contagious) who have no other home, and there is a strong outreach program to serve and rehabilitate people with all sorts of disabilities. 

Going to Thailand in one's great old age would have various benefits, not least of them elephants and tropical fruit. It is never cold, which would be good for those waning years when it is hard to get warm. There is a cultural kindness. On the not so bright side, though, family and friends would hardly ever visit. Medicare and Medicaid would not pick up the bill. Emergency hospital services would not compare favorably to the US. The recent movie, the Best Exotic Marigold Hotel, tells the story of some aging British people who move to India to live at a place that is trying to figure out how to provide assisted living for seniors, and portrays some of the drawbacks and benefits of outsourcing elder care. Moving to Asia is probably impractical for most aging Americans. Relocating would take a very committed friend or family member and a physically pretty intact potential nursing home resident and a hefty dose of courage and flexibility. 

Retirement Communities
Some people are wealthy enough and forward thinking enough to become part of continuing care retirement communities. For a chunk of money, which can range from $100,000 to over a million dollars, it is possible to have an independent house or duplex with the option to move into assisted living or a nursing home on the same grounds as the need arises. High end places of this type probably offer better staffing ratios and probably lower staff turnover than standard nursing homes, and it is certainly easier on couples who can live in close proximity even when one of the pair needs more help than the other.

Co-housing solutions
Cooperatives and co-housing offer another alternative to the corporate approach to aging care. This requires immense planning by community members, but is a way to deliberately and intentionally create an extended family with whom we can age.  

Having the conversation
So what should we do about the fact that we will all, with any luck, grow old? In the year 2050 it is estimated that 1 in 10 people will be over the age of 80. Perhaps half of them will require care of various levels of intensity. I will be 89 years old, if I'm not dead. The majority of people reading this will be 80 or older, or, possibly, dead. I venture to say that none of us wants to be in a nursing home. Are we really doing the hard work of remaining healthy and alive only for the opportunity to spend a small fortune living in a small fusty room with a roommate who may or may not be a suitable companion, waiting for a nurse's aid to come help us? Some solutions may involve technology, unloading overworked personal care givers by having robotic solutions to bedpans and med passing. Perhaps technology will unload everyone's job, and personal care will be one of the only jobs that still requires the work of a human. 

I think that it is mostly important for a conversation to begin, involving not just seniors who are vulnerable if they complain, but all of us who dread dependence and institutionalization. Those of us not yet old need to recognize that it is very unlikely that we will die before this issue becomes relevant. It is very inconvenient to say that the nursing homes we have now are an unacceptable solution to the problem of growing old. If we say that, we have to actually do something, because 1.3 million people need what nursing homes supply, and most of us are unwilling or unable to provide those services ourselves. 

Staying strong and useful
Besides actually planning for our years of dependency, perhaps we not-quite-yet-old also need to think about policies that make us less dependent. Most people dream of retirement, but the reality of not being useful or needed does not usually make us happy. I came upon a link to Thailand's initiatives on the elderly while looking at the nursing home situation there. In 2003 they passed The Elderly Act which, in addition to guaranteeing healthcare and basic food and shelter needs to older citizens, also grants them vocational training and support to become involved in community networks. I don't think we are doing that in the US. It might be a really good idea.


John Tarrant said...

thanks Janice, it's wonderful to have all this thought through in such a diligent and touching way

Janice Boughton said...

Thanks for reading!

Susan Sanders said...

Thank you for the well-written and thoughtful analysis and compassionate perspective. Reflecting on alternatives, people sometimes don't have the support system/help to find them, or they themselves don't know how to think out of the box. Educating, motivating people to think and act on what they value is key. Thanks again for your role in the conversation!

bett martinez said...

thank you, Janice. I've been thinking the same things, from a different perspective/two actually: for decades i've taught the well-being practice of Qigong movement and meditation. i'm also an insurance broker, providing those who wish with best offerings available.
currently i'm bringing my bi-polars together, presenting March 21-25 at the Intercompany Long Term Care Insurance Conf in CO. Here's what i'm proposing, in brief:
Enhancing Vitality In the Face of Increasing Longevity:
The Revitalization of Long Term Care Insurance

Since people are living so much longer, it makes sense that current products are not working well.

Studies have shown that healthy longevity is created by interconnectedness and living in near proximity of like-minded people while still having one’s own private space. Engaging in socially meaningful activities, nourishing food, and adequate movement are also key. Living situations that include all of these are almost nonexistent now in our culture.

This is the right time to create a template where people who are living longer will not need so much care. This is a Well-Being Experiment, not just a CCRC. This new model will reduce the need for care and offer shared care as necessary.

We are coalescing smart core people--Bay Area and Silicon Valley innovators--as investors and participants. Some are thinking about this as a place where their own parents could thrive.

One promising site is the new UC Berkeley campus on the Marina Bay waterfront. The university connection could be ideal as the model could be studied over time.

Where is the benefit for insurance companies? It will save them money because it will reduce claims and make care delivery less costly.

For more information contact Bett Martinez at 510-526-0312 or

i love your tale about the monastery.
if people volunteer to this sort of community i hope the response will be even more promising. hopefully, this model and study would have your support. welcome your questions, comments, and critiques

Janice Boughton said...

Bett, I like your statement about how our present structures are not working well because we are living longer, which is a situation that requires new solutions. We need to figure out how to make new good ideas that don't break the bank be financially attractive to major players. It would be nice if good ideas just happened because they were good, but that's not how it usually works. Good for you--I hope your presentation goes well.

eric777100763 said...

Janice, what a crock!! I do long term care. After 28 years as a nurse I cannot believe the misinformation out here. Now adays residents and their families want every luxury and staff to be their personal slaves! The clincher that you and 95 percent can't or won't get is people want it all now their way and of course free!! I have NEVER seen single patient mistreated! What I have and do see if patients spit, bite, curse and mistreat staff with impunity! Most patients and families want a chef to make a meal constant entertainment and to treat staff like a slave! Those are the real facts!

Rathbone Home said...

You are so cool! I do not believe I've read through anything like this before. So nice to find another person with unique thoughts on this subject. Seriously.. many thanks for starting this up. This website is something that is required on the internet, someone with some originality!