Sad cases

Nurses General Nursing

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I currently work in a LTACH. One side of my floor has an average of 18 patients at any given time - 17 of whom have tracheostomies and 100% of the trached patients are on ventilators for at least part of the day (usually nighttime, roughly 75% of the ventilated patients require 24/7 ventilation). There are 4 who are in a chronic vegetative state and typically have been that way for years. I believe all of these 4 have their years-long hospital stays paid for by the government (Medicare/Medicaid) while their 'loved ones' are at home banking Social Security checks and/or pension checks. All of these 4 DO react to pain, but that's about it. If you've ever seen a comatose patient with a look of horror on their face while you're working on them / suctioning them, you know what I mean. These are the saddest cases I've ever seen - WHO is looking out for their best interest? Shouldn't SOMEONE? I mean, I probably have a better chance of winning millions in a lottery than to see any of these patients wake up and have ANY quality of life. Since family has no intent of allowing their family member's suffering to end, shouldn't someone investigate the fact that the person's social security checks are being used for themselves and government money is being thrown away for keeping these poor souls "living" with feeding tubes and ventilators? If these patients could wake up for 10 seconds just to say one thing, I almost guarantee it would be "Please, let me go in peace!"

I know I shouldn't get so involved in certain patients but it just seems like someone should take responsibility for them since their family members are using them as a paycheck. Can't the hospital social workers perform investigations and go to court to gain guardianship / become healthcare proxy? It just seems like more should be done to stop these patients from undergoing unnecessary suffering. What is your opinion / advice here?

Ali, RN in MA

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Specializes in PICU, Sedation/Radiology, PACU.

Honestly, I think you are making some big assumptions about these families. You are assuming that the families are "keeping the patient in suffering" so that they can profit financially. You are assuming that they could care less about the patient's quality of life as long as they are making money. While there may be some families like this, in my experience, the great majority are not.

Nurses have different perspectives about life and death than many in the general public. We have learned, and been taught in some cases, that no quality of life means that the life is not worth living. Since it isn't our loved one in the bed, it's easy for us to make that distinction. However, for the family, the idea of allowing a loved one to die by withdrawing care if often inconceivable. They believe that any life is better than no life at all. So they really may care very much about the patient, but believe that keeping them alive by feeding tubes and ventilators is better than letting them die.

As far as the money is concerned, you really have no idea how it is being spent. It may be being used to care for the patient's spouse or family. it could be used for paying the patient's debts or other medical bills. It might be put into a trust for the patient's descendants or used in some other way that the patient specified.

Legally, medical decisions are made by the patient's POA. So even if social work were to do an investigation, they can't override the POA or the family without conclusive evidence that they are going against the patient's wishes or best interests. What did the patient's advance directive say? Perhaps the patient wanted medical interventions to keep him alive and the family believes that they are honoring their wished.

I understand that this situation is frustrating and upsetting you. Maybe you are getting burned out in your current job, which sounds very stressful, and need a change of pace. I don't think that you can assume the worst about the family and have them investigated because you don't agree with their decisions. It might be helpful for you to vent your feelings to a support person at work. Good luck to you.

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I am not making assumptions - This has already been proven.

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Specializes in PICU, Sedation/Radiology, PACU.
I am not making assumptions - This has already been proven.

How has it been proven?

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Specializes in Medical and general practice now LTC.

Moved to the General Nursing Discussion forum

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Specializes in LTC, MDS, plasmapheresis.

I agree with the OP, people are kept alive to maintain other's lifestyles. I have directed 1000's of care plan meetings, and often family members make no bones about the finances involved. And it's also not uncommon for the financial office to get irate calls for family members for minor bills, that they don't feel obligated to pay since "Mom is on MEDICARE! WHY are so you sending ME this bill!?", etc. Pensions, annuities, insurance policies, real estate, SS, and on and on are all at stake if a patient dies. And, check to see how many vegetative patients have visitors.

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Spend time in an adult ICU and in hospice or in LTAC. Sometimes it is something that one becomes aware of only as they age as well. If you are oh, say over 40, and are a nurse who has spent time in these units, and, have been through the personal ordeal of family member severe illness as well. You begin to see things in a very Frank way. People, many, many more than you want to admit DO do these things, they are all around you by the thousands. It's just really uncomfortable to some to admit that they do know how many folks out there are just not what you thought morally, ethically. Yes, the world can be a nasty place. As an RN you might see some of the worst nasty. If you were not an RN, you might have not been faced with this kind of knowledge and really that is why, at least I know that my friends I had/have from my old life, pre-RN, have this lightness about them because they don't know what I know. All this type of conversation would seem like confabulation to them. It is a true horror story.

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Specializes in PICU, Sedation/Radiology, PACU.

Since I work in PICU I see the opposite. I see families desperate to hold on to their child for as long as they can. Willing to give anything for their child to open their eyes. Unable to accept that the child could possibly be dead if there is a heart beating. Interpreting every primitive reflex as a sign that there is still hope for recovery.

Not to say that there aren't rare exceptions when parents don't visit. When days can go by without calls for an update. But I'm still going to choose to see the best in people, unless I have proof otherwise. The OP has yet to provide any evidence that the families are doing the things she claims, other than a feeling or the examples of others. Even if they are, like I said earlier, it would be legally very difficult to prove that they are acting against the wishes of the patient. I doubt the LTACH wants to undertake that kind of responsibility. This is why advance directives are so important.

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unfortunately advance directives are the most useless in a situation where they are needed most ie: family that Grandma doesnt trust to follow her wishes so she has advance directives which family promptly ignores by threatening the hospital & medical staff with large lawsuits. i had a 95yo nonverbal x5 years, hx of dementia, 3 large decubs, PEG, Trached full code who doesnt respond except to painful stimuli and she was trached & PEGed because the lawyer children threatened to sue if her "I do not wish to be kept alive by artificial means or tubes" were followed.

dead people dont sue.

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i don't know how this can be proven, but it HAS been my experience that op is spot on.

and it is a heartbreaking and appalling situation to witness.

anecdotal stories, should not always be discounted.

leslie

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Specializes in PICU, Sedation/Radiology, PACU.
unfortunately advance directives are the most useless in a situation where they are needed most ie: family that Grandma doesnt trust to follow her wishes so she has advance directives which family promptly ignores by threatening the hospital & medical staff with large lawsuits. i had a 95yo nonverbal x5 years, hx of dementia, 3 large decubs, PEG, Trached full code who doesnt respond except to painful stimuli and she was trached & PEGed because the lawyer children threatened to sue if her "I do not wish to be kept alive by artificial means or tubes" were followed.

dead people dont sue.

I completely agree. But an advance directive would at least be helpful if someone were trying to go to court to prove that the family was not following the wishes of the patient. Without the advance directive, it's just the word of the family that Grandpa wanted to be kept alive no matter what.

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I completely agree. But an advance directive would at least be helpful if someone were trying to go to court to prove that the family was not following the wishes of the patient. Without the advance directive, it's just the word of the family that Grandpa wanted to be kept alive no matter what.

that's true, i never thought of that. i wish the ethics committees would get involved more often, sometimes i think the hospital likes the repeated weeks long hospitalizations for UTI/septicemia/cdiff cause i dunno..it brings in revenue??:rolleyes: (disclaimer: jaded person here who has worked for ALOT of corporations medical and not medical)

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