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One of the Last Chapters in the Big Book of Life | March 8, 2013

Dr. Barry

I am so going to surprise you by actually writing about something I have some experience with. I want to talk about something that’s going to depress you. No, not the economy, it’s not about the future of health care, although both subjects have left me morose. It’s March so it’s a dark, wet, cold time anyway…perfect weather to let a bad mood fester. Of course that’s why I always take and recommend a vacation down south this time of year for some much needed warmth and sunshine on the old pineal gland. No, the depressing issue I want to write about is Nursing Homes. Not the care in nursing homes…but your unrealistic expectation of life therein. I have worked in two nursing homes and was a medical director of a third. I still have a floor at a local home that I have worked at for over 20 years so that’s my bone fides. Last year my mother died in a nursing home so I also have the perspective of a family member.

I don’t write these columns to make friends…sometimes I write to get stuff off my chest or to show a different side to a story, but today I write to because sometimes there’s stuff you really need to hear and you are not going to hear it from anyone else…not in writing, anyways. Everyone who works in any aspect of the nursing home environment…the nurses, the diet staff, the therapists…they all will nod in agreement with what you are going to hear. I’m not going to sugar coat this topic…it’s too important.

Let’s start with the basics. No matter how nice you try to make it…paint the walls in cheerful colors and dress up the dining service and have memory hour during activities…it doesn’t change the basic facts. For the vast majority of residents, the nursing home is the place to go to die. It may be in 3 days or 33 years but most people don’t get out alive. It’s the last train to Clarksville, people. It’s the end of the end of the line. No body but nobody says “I am looking forward to spending my last days in the nursing home. Get me there on the double.” Not everyone wants to spend their waning days in their own home…however unrealistic that may be without a buttload of help. Not everyone has the resources for this help and so we shuttle you off to the nursing home.

So the nursing home is unfortunately all too often the last chapter of your life. It’s usually not a very pleasant chapter. Can you see the comparison with a book? If the last chapter of your life is going to be unpleasant…why would you prolong it? Is it better to die within a month of entering the nursing home or would you rather linger usually in great diminished capacity until some illness finally claims you? You go into the nursing home because of a broken hip or because you are too old or weak or had a stroke…most nowadays go in with dementia. Even the demented patients…maybe especially the demented patients, know they are in the “wrong place” and can literally beg anyone that comes by to take them home or ask over and over again “Why am I here?”

These poor retches are taken care of by people who can never get paid enough for the care they give. Their families have completely unrealistic expectations of how much time and effort can be put into any one patient’s care. The costs of care…or at least the charges seem outrageous. You could live abroad a cruise ship and get more care, better service and better food for a cheaper price. It’s the next most regulated industry short of nuclear plants. Probably has surpassed nuclear plants by now. Whole staffs have been hired…countless hours of completely ridiculous paperwork to try to explain away and justify the events that inevitably have to happen in the nursing home. Here’s a partial list of what inevitably happens.

Your loved one WILL FALL. Unless we strap them down they will want to get up for any number of reasons no matter how confused and weak they are…and they will fall. Honestly you know, I blame many of these falls on too many medications. Staff and families alike want a medicine for each problem…there must be a pill for the agitation…sure there is but it comes with a black box warning that says its use results in more deaths than in patients who don’t take the meds. But meds or no meds your loved one will fall…the last fall will result in some serious injury and they will pass away…will you make them struggle in some ICU or will you let them pass quietly away with family nearby?

Your loved one WILL get dehydrated, have a urinary tract infection and get pneumonia. You can’t easily or reliably prevent any of these things from happening. If you give them food they can’t recognize they will choke. Personally I would rather choke on a nice sausage sandwich and die rather than have all my food pureed so it’s just globs of different colored mud on the plate…the pale yellow puree…the brown glop and the green glop…I know the therapists that made that suggestion and the dietary staff that is arranging it are doing their best but that doesn’t mean you have to go along with it. A knowing and eminent doctor long ago said that “Pneumonia is a friend of the elderly and in firmed alike”. He said that over 100 years ago and that means that a quick death from pneumonia is preferable to a slow lingering death.

So let’s get down to serious suggestions. Maybe you won’t understand my suggestions until you have someone you love go through this. Just because it’s the last chapter of your life and just because you don’t want to prolong this certainly difficult tome doesn’t mean you don’t have a helluva lot of control over it still.

Make you loved on a DNR. Of course you don’t want your mother to die. Sorry, gonna happen anyway but you can help her with a DNR. When the end comes they can die peacefully with meds to keep them comfortable or they can die surrounded by tubes and wires and some poor nurse or doctor crushes their chest in an order to keep them alive a few days longer…and those won’t be good days.

Let them eat whatever they want. If Uncle Johnny wants ice cream for breakfast, lunch and dinner…why the heck now. Who cares if they were on a low-salt diet on the outside. Who really cares about their diabetes now. It’s about quality of life now…not quantity. Unless the resident can sign the papers themselves don’t put a feeding tube in. this isn’t saving their lives…it is prolonging their suffering. When you can’t reliably swallow any more it’s game over…

Stop most of the pills. Why are you letting them give your loved one a pill for cholesterol? Don’t you realize a stroke or quick heart attack would be a blessing for most of them. Likewise it’s long past time to worry about high blood pressure…the side effects from the pills are likely worse than any possible benefit from the meds. Your own doctor will likely admit it if you press him. If the pill directly makes them feel better…Tylenol, pain pills, etc., use it. Otherwise, you are just not thinking about the end game, a painless gently passing into the next life.

Aggressively treat pain. I hate codeine for chronic pain on the outside but in the nursing home because again it’s the last stop on the train to endsville I open up the cabinet and will try to help keep your pain to a minimum. No one ever said to me “My mother was too comfortable when she passed”, but they have said the opposite. Don’t be frightened of morphine at the end. We are not committing euthanasia, we are making the patient pain free as far as we can tell. It’s one of the few things we do have control of.

I try to treat all my nursing home patients with three guiding principles. Would I do this to or for my momma? Would the patient themselves want this treatment if they could wake up and speak to us for just a moment? How do we help the families realize there is only one eventual outcome and to focus on that understanding rather than the day to day stuff that drives them crazy? I am not saying in any way that the families’ concerns aren’t real or valid. It’s just not focusing on the big picture. This makes decisions easier for me. I hope my suggestions make things a little easier for you.