KindEthics Newsletter November 30, 2009
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The great secret that all old people share is that you really haven’t changed in seventy or eighty years. Your body changes, but you don’t change at all. And that, of course, causes great confusion. Doris Lessing
Putting The Human Back Into Nursing Homes:
One day when I was visiting my aunt at the skilled nursing facility, the woman that shared her room was complaining to the nurses aide that she was tired and she wanted to put on her nightgown and go to bed. The aide told her that she couldn’t go to bed, because it wasn’t allowed until after dinner. I remember at the time thinking how strange this was. Why couldn’t this woman go to bed? If she was tired, why couldn’t she take a nap? My dad took naps, I take naps and lots of other people take naps. I realize looking back that what this woman wanted/needed didn’t fit in with the schedule of the nursing staff or the institution. When did the needs of the staff become more important than the needs of the resident? When did the nursing home staff become the boss of the resident? When did the residents lose their right to having their basic needs and decision making power taken away from them?
(This bothers me a lot as I am writing this. I can imagine the day when I am living in a long term care facility and someone won’t let me nap. I love to nap and can’t imagine that this would be taken away from me just because I am old. But it isn’t just about the nap, this is about our human need to be listened to and to be respected while we receive the care we need.)
I have been reading The Erosion of Autonomy in Long-Term Care written by Charles W. Lidz, Lynn Fischer and Robert M. Arnold. This book takes a look at the history of long term care facilities and where we are today. As you can tell by the title, the right of the patient to be heard in these facilities is slipping away.
The authors write that what once was a home-based environment to serve the needy in our small communities, has morphed into a hospital-like institution where the rules dominate the humanity. The residents who “behave” and are “compliant” are good and those who want something that isn’t on today’s schedule are “bad”.
This makes me wonder if the people we store in nursing homes are as impaired when they get admitted or if the institution itself, takes away their voice and their interest in life. (I know I just said store in nursing homes. Perhaps that is too harsh a word, but have you visited a nursing facility lately? Have you seen what kind of life these people are living? If you haven’t, I would suggest that you visit your local care facility.) Another concern I have is the growing number of people being abandoned by their families in nursing homes. There are laws against abandoning your pet, but we allow people to be disposed of and forgotten in these institutions. Something has to change and it has to change soon.
Now I am not saying that people are being mistreated in care facilities, (of course a few are and that is why we have ombudsman to protect them), but what I am saying is that it is no kind of life for the residents at most of these places. But this doesn’t mean it can’t be improved and that some people know how to get it right. I recently talked with a woman who raved about the place where her mom was staying. Her mom had been admitted to one facility and when it became evident that it wasn’t a good place, she took the time to find a better place for her mother. Advocacy and effort matter when it comes to our loved ones.
So, here are some organizations that are helping to get it right.
The Pioneer Network http://www.pioneernetwork.net/
The GreenHouseProject Homes http://www.ncbcapitalimpact.org/default.aspx?id=148
The Eden Alternative http://www.edenalt.org/
National Consumer Voice for Quality Long Term Care http://nccnhr.org/
There are four states receiving financial incentives from Medicare to change the culture of nursing homes. Arizona, Mississippi, New York and Wisconsin. If these incentives work, then these programs will be spread to other states.
The Nursing Reform Act is also working to promote and mandate the changing of nursing facilities from institutions into a more home-like environment. Where people can live without hearing bells and alarms going off or being told when they are tired. Where people can get up when they want to, eat when they are hungry and be treated as an individual. You can download information about the Nursing Home Reform Act at http://www.resource4nursinghomeabuse.com/images/pdf/nursing_home_reform_act.pdf
I think if I was granted one wish, this is what I would wish for. That long term care facilities could become home-like and that people wouldn’t be abandoned in them. I don’t have the answers but I do know that others do. If you are interested in being part of the change, volunteer at your local nursing home. Connect with one of the organizations that are making a difference. And if you are a healthcare professional, make sure you visit the facilities you are recommending to your patients. Don’t take someone’s word for it that it is a nice place, go there yourself. See what is being served for dinner and sit and watch what is happening. You will be surprised by what you see.
Have a kind and respectful day.