The Floors

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.

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9 responses

  1. Preparing for end of life matters before it becomes urgent is a good idea.My parents did.My wife and I have.My in laws never did.My father in law has Alzheimer’s and can’t now.I would hate to see him in the situation described above.
    Home hospice workers are super.I was there to see them take care of my father,because I was injured on the job and out for two months just when he was going downhill,so I was commuting between here and New Jersey-the home hospice personnel really did a great job when I was there and when I wasn’t.At least my father didn’t suffer mental lapses,so it wasn’t like some other cases-he just had a lot of pain and wasting from bone cancer,but he was able to participate in his own care.My garndmother died of stomach cancer at home-there was no home hospice back then(1959),BUT the doctor lived down the street and made house calls(!!).Docotrs lived in the neighborhoods they served often enough back then,with the office in the house.
    I’ll never mistake end of life counselling with euthanasia.
    Please don’t tar everyone with the same brush who wants to stop and examine this legislation carefully.I think it is far too important to go over it in detail publicly,rather than rush through it while critics with legitimate concerns are told essentially to shut up by Obama and Pelosi.
    Please don’t insinuate that everyone who raises questions at town halls is somehow shilling for insurance or drug companies,or is a mind slave to Glenn Beck or Sarah Palin.I wouldn’t let either of them tell me how to cross a street on a green light,but I still have questions about the bill,particularly concerning illegal aliens.I don’t know how anyone can listen to Glenn Beck-the few times I’ve seen him he looks and sounds crazy.
    Thete was a guy on CNBC named Cramer who also seemed nuts,but he wasn’t very political as I recall-he was hawking stocks-something I never got into(a good thing too).
    I worked in a hospital in Brooklyn for a while after getting out of the service,so I saw a few things that stayed with me.i didn’t like the job,but it was another part of my life education,so it wasn’t time wasted.

  2. Thanks for your post, Joe.
    It’s hard to keep your cool when people are making outrageous claims about your profession and about your patients, many of whom have specified which treatments they don’t want. This kind of talk didn’t start with Sarah Palin. The Catholic church had spokesmen saying that it’s a sin not to place a feeding tube. The pro-life movement was very involved in meddling in the family dispute about the care of Terry Schiavo.
    That doesn’t mean that we should not carefully examine the health care bill. It’s just hard to screen out all the noise. The Republican party is not acting like a responsible opposition–they’re letting their extreme wing take the lead.
    I don’t know the answer to health care for people here illegally. I have a problem with denying care to anyone. A lot of ‘illegals’ have children who are citizens, and some of them came here as children and have lived here all their lives. Also, an untreated condition today can be a rush to the ER tomorrow. I know that we don’t have unlimited money to put into health care, and covering our own citizens is a challenge. I would like to look at what Canada, France and England do.
    Marjane Satrapi was a young woman who was suffering from severe depression and ended up sleeping outdoors for weeks. She eventually passed out on a park bench and was picked up and taken to a hospital. She was treated for pneumonia, her family was called. They had been desperately worried. She was an Iranian student in France. Today she is a respected graphic novelist, a film-maker and a voice for the youth of Iran who suffered under religious dictatorship. I’ve wondered what would have happened to her if she had come to the US instead. Who knows, but it would have been a terrible loss if she had died on a bench somewhere.

    1. A true,interesting story:My friend Mike,who was a Border patrol academy classmate and served with me in Chicgo,left the INS and eventually became a primary care doctor in Iowa.He worked at a small clinic for years and was in high demand by both legal immigrants and illegal aliens because he was fluent in Spanish and also a genuinely nice guy.He was noticing a large number of patients from the same town far in the interior of Mexico.He finally asked a patient why this was the case and the patient told him they had signs posted in the town that if you were working and kliving in a particular area of Iowa this clinic had a Spanish-speaking doctor and no prying questions were asked.Mike said that the clinic set the policy and he had no problem with it since he was no longer a sworn officer.I think he was right in that regard.I don’t want to deputize medical personnel,teachers,etc to be auxiliary immigration officers.
      Trained police officers and personnel making decisions on distributing government assistance are a different story.
      A country full of snitches isn’t a healthy country.
      I think my attitude is reasonable in the face of the enormous problem.

  3. The way things are now,she wouldn’t have been turned away.Haven’t you become aware how many hospitals in proximity to the border have gone under?In California it’s not just at the border for that matter.It’s because of unreimbursed care to illegals.Pneumonia is an emergency-I wasn’t referring to that type of illness.
    I wish the shouting would ratchet down because it accomplishes nothing.This,as I’ve said before,goes beyond health care or even liberal/conservative-it is to a large degree anger at legislators who forget they work FOR US two seconds after taking the oath of office.It then becomes a non-stop effort to stay there and suck up every perk that doesn’t sit still.And money-LOTS of money.Just ask Mr.Army Ranger Jack Reed.
    The health care debate has served as a trigger to the long-festering problem of poor(or none)communicationn between the governing and the governed.

  4. Great memoirs, Nancy! I see the potential for a book of memoirs about nursing experiences — would make a good tool for exploring the complex issues nurses face.

  5. My quad father is on a vent, he broke C1, 15 years ago. We almost lost him again this month. He’s been in ICU for 3 weeks now.
    They just put in a feeding tube yesterday, as his swallower isn’t working well.
    The above post is a good honest view of things. I appreciate that.
    The staff at the hospital know my family so well by now (15 years of this), that they all have approached me at one time or another to comment on what wonderful people my parents are, and how they have come to love them like family.
    When Dad is not doing well, they actually come to the ICU on their days off to check on him, or at least call.
    Wonderful people like you Nurses make life bearable in the worst situations.
    Thank YOU!

    1. My mom,who’s 96 broke C2 in March and because of good medical personnel,she’s walking around,despite getting pneumonia during the recovery.The nurses in Rehab were great,as were the therapists.Her neurosurgeon was no slouch either-he went with the most conservative treatment-no surgery,no HALO,just a collar.My mom already had specified if she were paralyzed she didn’t want life support-this about 18 years ago.I think all Americans should understand this option.

  6. thank you for saying that. I hope your father recovers soon, best luck to him and you.
    I’ve had patients who were temporarily unable to take in food, or unable to take in enough. A feeding tube can relieve the pressure to take a certain amount of food and water a day, so the patient can eat and drink only what they can or only what they want.
    It sounds like your father is safer with the tube, so that he’s not at risk for choking. Nursing homes I worked in had speech therapists to evaluate how much patients could safely swallow and help them overcome problems that kept them from eating.

    1. We did get the evaluation. I do believe he will eat naturally again, just not yet.

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