Hospital nurse slang. You work in the units–high tech like operating room or Intensive Care– or on the floors. That’s Med-surg, general nursing. I’ve always worked on the floors, nursing home long-term-care or rehab, and later in home care.
I took my first job in health care, as a nurse’s aid, in 1984. The place I worked closed down following an incident involving a hot tub that Rhode Islanders still talk about. At the time nurses aides were not certified, we got on the job training.
This was before advance directives, DNR, Hospice and end of life issues were discussed. Our instructions were to make sure that each patient ate enough to satisfy the state regulations whether they wanted to or not. If this was not force-feeding, I don’t know what else to call it. We nagged, cajoled, tricked and forced unwilling, unhungry elderly people to swallow enough cc’s of mush to meet the regs. We have comfort care now, we had discomfort care then.
And no one was allowed to fall. That would be neglect. The charge nurse made it easy. “Posey that patient!” I can still hear her say. A ‘Posey’ is a vest with strings for tying people to beds and chairs. I haven’t seen one in years. But in those days all the patients who had not the wit to escape into their rooms were tied to chairs for the shift.
The nurses were miserable souls. They sat smoking in their nurses station, looking idle from my perspective. Nurses aides do the hands on, difficult, never enough time work. It’s no picnic on the other side of the desk, though, passing meds to 20 people with no margin for error, treating wounds, assessing condition, calling doctors, writing notes. Always knowing that the care you are able to give is far short of what you would want for yourself or your loved ones.
It was about as homelike as a mill. But the first day I saw some things clear as day.
It’s not true or fair to assume that families dump their loved ones in nursing homes because they don’t care. You see the whole range of family dynamics, but there are many who visit daily for hours, very devoted families and friends. Also, it’s not fair to blame the nursing home for all the suffering that occurs there. The illness itself is the worst villain. This nursing home–and it was a lousy one, had patients who were doing just fine. They were the ones who were well enough to get up, walk to the bathroom, dress themselves and eat. They could sit outside smoking, or walk across the street and buy stuff that wasn’t allowed on their diet. For them the nursing home functioned as an assisted living. The staff had quite enough helpless patients on their hands and had no agenda to make anyone more disabled than they had to be. On the other hand, there wasn’t much rehabilitation. Helping someone to regain function takes time, which we never had enough of.
I didn’t stay at that job for long. The pay was minimum wage. I moved to a couple of other places and began to temp. I started to see patients on feeding tubes.
I was sent to a place that has changed hands a few times since I worked there. It’s a place that was built to serve a community, and financed with their donations, and mismanaged. I thought it resembled Dante’s circles of Hell, with the highest floor being the most damned. That’s where I took care of a tiny, emaciated woman on a feeding tube who screamed nonstop. “Don’t worry”, I was told, “She does that all the time.” Other ancient people were unresponsive, or in a world of their own. I was careful to get the nurse if I had to have the feeding stopped to change the patients, but there was an incident I heard about after I’d stopped working there, where an aide mixed up some tubes and ran liquid nutrition into a patient’s lungs, or at least that’s what I think happened. Bad stuff.
I kept returning to health care from other kinds of work, there were always jobs and they were interesting. I was sent to temp in a hospital. It was the night shift, and the patient was a man dying of cancer. He had been sleeping all shift, but when I walked into his room for a last check, he sighed and ceased breathing. I did what I was supposed to do–tell the nurse. She did what she was supposed to do, call a code. He was pounded back into life and lasted a few more weeks in intensive care. I don’t know if it would have been better if I’d not walked in and he’d died in his sleep, I knew nothing about him or his family. But if there is no ‘do not rescusitate’ order then everything will be done. I’ve talked to lots of people who were coded and brought back, so if there is a fair chance of recovery it’s worth it.
Later, as an EMT, I participated in codes that made no sense. These were dying, unconscious, elderly people shipped into the ER from nursing homes. There was no DNR in their record and no one was going to take the rap for failing to do everything possible. So the patients were sent in by rescue for a futile round of CPR, defibrillation, intubation and IV’s. It’s a shame that end of life care was not discussed more, because what’s a lifesaving treatment for someone who has a chance of recovery is senseless violation for someone who is dying a natural death. I’m glad that my grandmother who died in a nursing home was allowed to stay in her bed, surrounded by her family, in peace and dignity.
Working as a nurse in a nursing home I had to cope with people who ripped their tubes out. This was not temporary delirium. These were people who were stroke survivors. One had relatives who decided to have the tube placed. They never visited. Another had to have her hands restrained. She had no relatives to make the decision for her, so the tube stayed. She was too demented for her actions to count as an expression of her wishes. I saw a man who was put on a feeding tube in his last days and passed green bile. His digestion must not have been working anymore, he didn’t live long. I saw people who did live a long time, unable to move or speak, seeing a familiar face maybe once a week for an hour. I think I’ve seen enough to say I would not want this for me or my loved ones. There are fates that seem worse than death.
I had the privilege of removing a feeding tube from a woman who had recovered enough to eat normally. It’s just a device, one that can be lifesaving and health-restoring. But at end of life we run up against a question–just because we can do it, should we do it? Is it always right to keep someone alive for a few days or weeks regardless of what they said they would want, regardless of their condition?
I worked on the floors before there was Hospice, and I saw patients die under florescent lights with the TV blasting, lie in a bed staring at the ceiling, mute, with a tube in their stomach, pushed to take food and meds that they spit out or let run out of their mouths. This is one reason people fear nursing homes.
The Terry Schiavo case never became the Republican recruiting tool it was supposed to be. Too many people have seen what their relatives went through in their last days. People who can’t ever imagine themselves having or condoning an abortion can all too easily imagine themselves helpless in a bed while politicians cut off all options for refusing care.
I think that a lot of the push for feeding tubes and interfering with dying was helped along by the profit motive. Good reimbursement.
Natural death is not always peaceful. It can be awful. It is a process. Interfering with the process does not ease suffering. It’s better to put our energy into extending good quality of life, as the patient defines it, and easing pain.
I was working in the community and a patient of another agency, a young woman with terminal cancer, died in her apartment. A nurse who had talked to the woman’s mother dropped an implication to me that the Hospice nurse had intentionally overdosed the patient. Easy to say, hard to forget. I can’t blame the mother for raging against an intolerable loss, but I wonder at the nurse who had the Hospice nurse accused and convicted in her mind and spread such slander. I myself once was preparing a dose of pain medication for a dying woman when she suddenly passed. The family was inconsolable. Would they have blamed me if I had given the med a few minutes earlier?
The kind of language going around, comparing health care reformers to Nazis, claiming that the elderly are being euthanized, is a slur not only on politicians but on health care workers. We see the reality. We see the uncertainty. It’s a slur on families who ask that their loved ones be given pain relief and not be forced to take treatments that they don’t want.
It’s one thing to sit and write about mortality, it’s a different thing to be of an age where you know your time is short. I am always impressed by the courage of old people, and the equanimity. They talk quite frankly about death. Everyone is different, some want everything done, some fear pain and loss of independence the most.
A health plan that pays for a consultation with their doctor, to discuss end of life treatment is a benefit. It’s better to listen to the elderly and let them make their wishes known.