“The real reason for not committing suicide is because you always know how swell life gets again after the hell is over.” “What does a man care about? Staying healthy. Working good. Eating and drinking with his friends. Enjoying himself in bed. I haven’t any of them.” - Both quotes from Ernest Hemingway, at far different times in his life.
For a brief period, I took care of a lady who had severe knee and hip osteoarthritis. Bad enough that she would have easily qualified for joint replacements, but her numerous medical problems (we call them comorbidities, an awfully cold yet very descriptive term) made her too high a risk for surgery. She was unable to walk more than a couple of steps at a time. As long as she was able to lie on her sofa she was not in pain.
She had worked hard all of her life. Enough to be able to afford a small house, which was paid for. She received social security, and she had minimal savings. She was a senior citizen of modest expectations. She felt financially secure.
She was admitted to the hospital with heart issues. It was clear that she had not been taking care of herself. A bit malnourished. Unkempt. Poor hygiene. One of those instances where the doctor is sure that, with proper care and medication, the patient will improve.
Care for her we did. Heart medicine. Knee injections. Healthy food. Many family members stopped by to see her. We were sure that we had scored a goal in this case. She left our care with few symptoms; clean; happy; looking forward to the future.
She was back within two weeks. With the same issues that she presented with in the past. Maybe worse. Again, she did extremely well with proper care. We sent her home, but this time we sent a social worker to her house to see what had gone wrong.
The day after her visit I received a call from the social worker. It made me shudder.
There were seven people living in her small house. Most of them related to her, but there were a couple of boyfriends in the picture. Numerous other visitors stopped by. To eat or socialize; sometimes they would disappear behind a closed door. No one in the house had any means of support. All of them depended on her social security check. Her savings were dwindling.
The social worker found her lying on the living room couch. She did not have a bed, or a bedroom. She had soiled herself, but no one had tried to clean her, or to help her to a bathroom. It was mid- afternoon at the time of the visit. She had been offered one candy bar to eat the whole day. No one had brought her the prescribed medicine.
A clear case of elderly abuse. The social worker told my patient that she would call the hot line. The old lady vehemently protested.
“Why? You would be better off in a different place. Get the help you need.”
“It’s my home. If I go in a nursing home they will take it away from me. These are my children. They depend on me.”
“But you are not getting any help!”
“I would rather have it this way.”
I called the hot line. The family stopped bringing her to me. I lost touch.
Why do I bring this up in a context of end of life? Because sick people, particularly the elderly, have values and fears that we cannot begin to understand.
It does not matter to many of them if relatives take advantage of them, as long as they feel needed.
They feel that if they are left alone and uncared for, this is a small price to pay for avoiding a nursing home. They do not want to be a burden.
They want to leave something behind for the kids. They do not want all of their resources used up, even if the little money that is left is employed to help them be comfortable.
Most important: they want control. They want some say as to where they live, and with whom, and how their care is administered, even if it means that they will suffer as a consequence of their decision.
If you were to take a basically helpless person and give him or her a terminal diagnosis, many of them will ask their doctors to help them kill themselves. Because they do not want to be a burden. They want money left over for the kids. They want control as to what happens to them. What better control than to be able to end it all at their command?
They make no mention of what the best way is to care for them.
The Covid-19 pandemic has laid bare, in case that anybody was unaware, the neglect that our elderly population suffers. Pharmaceutical firms will spend hundreds of millions of dollars in order to develop medications that might prolong our lives by a couple of years. There is truly little money invested in trying to come up with ways that our senior citizens can retain some of their independence while receiving a desirable level of supervision.
Too often the choice is stark: be warehoused in a nursing home or be left alone in your home under filthy conditions. Be able to cook and clean for yourself or die. We could mobilize an army of caregivers to provide essential needs. We have enough computing power to come up with ways that we could remotely monitor senior care. We could design buildings that would make it easy for young tenants to “adopt” an elderly person who lives next door. We neglect to use the skills that functional seniors have: they could tutor children at math; they could take a young kid to the zoo once in a while.
Our society has successfully marginalized the elderly. We have made up our minds: you reach a milestone birthday, and you become useless, overnight. We need to figure out, soon, how we can keep the functioning minds sharp, and how we can help to slow down the deterioration that some experience. We must show our gratitude in better ways than with a social security check.
There should be no compromise in this endeavor. We should; we need to; we are obligated to care.