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?
Specializes in Clinical Research, Outpt Women's Health.
It is sad. Inhuman really.
However, along with the financial issue is the "right to life" issue which many people passionately believe in no matter what a horror that so called life is.
makes me sick. I try to find understanding in my heart because I believe they think they are doing the right thing, but realistically I almost hate them.
This is a major reason I think I don't do acute ot LTC. I just found it to depressing even before I became a nurse (rer-nursing worked many years in the hospital).
I've worked for a year in one hospice ward (plus doing agency as well), and all I can say is, when it boils down to it:
EVERYTHING IN THE END IS ABOUT MONEY.
Unfortunately it's the reality of today - and always has been actually.
I've witnessed family members arguing over a dying man re his will, who would pay for what etc and the hospice RN threw the whole lot of them out. That patient died with her holding his hand. I've seen a senior nurse accused ot stealing money meant for hospice patients. I've seen a hospice volunteer scoffing food meant for relatives of dead patients at the memorial service we held every year. I've heard some nurses say they are only working nights in hospice simply for the money - patients seem to be secondary.
It's not evil - it's just life. Bills have to be paid (even dead people's bills), funerals have to be funded, all the minutiae of death has to be financed somehow.
As Vivian Leigh said in Streetcar Named Desire: 'Death is expensive'.
Movie: Critical Care. Exposes the corruption in health care. You'll LOVE it! In a nutshell, guy is in ICU, has 2 daughters. One pushes hard to unplug him, claiming he'd 'never have wanted this kind of life!'. The other fights tooth and nail to 'do everything- Daddy wants to live forever!'. The will specifies that one or the other inherits everything, based on the exact date and time he dies...
Is it contrary to say that I agree with just about every poster in this thread? That is ... the motivations of human beings run the whole gamut.
After 5 years in urban EDs I thought I had seen it all ... then I went to the ICU. It has been a world-view altering experience for me.
If I had to sum it up, I would say that I have been and continue to be disheartened by our culture's lack of long-view perspective, and lack of ability to cope.
How many times have I heard from the family of an 85-year old patient, "But Mom was active, cutting her own grass last week!" I understand the shock ... if your mom just had her CVA. But if mom's CVA was 11 months ago, and she has now been trached, PEG-ed, and unresponsive to anything but pain/suctioning for the last 10 months ... what is the reason that family have been unable to adjust to the new reality and make some practical decisions? And even if mom was running circles around her family at age 85 ... did it really never occur to you, gee, Mom's 85 now ... she's getting up there in age ... what might the future hold?
So there are individual cases where decision-making is about the social security check. Or a complete lack of perspective on the inevitable passage of phases of life. Or both. Or neither. In my mind, it all boils down to a lack of coping skills.
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. MA
It doesn't work that way.
Even if Medicare is paying the patient still has to pay for a portion of their stay. Once their assets are gone (or nearly so) Medicaid kicks in. The State still makes the patient exhaust their assets (or nearly so). Social Security gets diverted to reimburse the State, patient co-pays are adjusted to absorb private retirement. If the family doesn't use the patient's income to pay the patient portion the State steps in and has a representative payee designated.
Not really. Medicare patients are 'billed' for their share of cost, most of which very few providers even bother trying to collect. And with a smidgeon of research, anybody can find a legal way to protect all kinds of assets from Medicaid, such as a trust, etc.
Ashley, I'm going to assume from your profile that you are very new to the nursing profession. Someday you will see what people put their "loved ones" through just to gain financially. Trust me, someday your naivety will be replaced. As a nurse, we must always advocate for the patient whenever possible but it seems our hands are tied in situations like these. Have you ever seen someone who's been in a coma for 9 years and hasn't responded to anything but PAIN since they were admitted to the hospital? I'm guessing the answer to that would be a "no". All their muscles have contracted (even with daily passive ROM exercises). They cannot even wake up and tell you to stop the nonsense and take them off the vent & feeding tube. After 1 year, you have a better chance of winning the big lottery drawing than to see a comatose patient awaken and even less of a chance of that patient waking up and actually having ANY quality of life whatsoever. Someday you will see what suffering some are put through just so families either "feel better" about themseon the lookout lves or "collect a check as long as mom/dad's alive". Since we are supposed to be advocates for our patients and 'mandatory reporters', you cannot always assume the best in people - you should always be suspicious of the other side to protect your patients!
Also, since you work in a PICU, you really are working in an entirely different situation and really have zero cases that would even resemble the comatose patients for which I care 40 hours per week.
Investigations were done by the social workers on these long-term comatose patients' families and family "let it slip" about the checks being deposited into the account of their loved one where they promptly remove it as soon as the government deposits it. These family members NEVER visit unless called in by the doctor. They PRETEND to really care while their "loved" one's pension and/or social security is paying for that new car s/he's driving as well as anything else they can obtain with their loved one's money.
Since Medicare / the government take so long to even INITIATE their own investigation into this kind of situation, there is absolutely NOBODY to truthfully act as a healthcare proxy in the best interest of the PATIENT, instead of the financial well-being of the family. So, these patients are allowed to suffer unnecessarily while their family are out having a grand ol' time.
And thank you to everyone who understands exactly about which I'm speaking.
I think a trach and peg is the most inhumane thing to do to a person.....in most cases. I hate how people want everything done for a 127 year old person when quality of life has gone to the crapper. People really need to understand the difference between quality and quantity. Id rather live 50 great years than live to see 80 and have no function left.
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.
Yes we crossed over to the dark side. THere is no return. .....
I've experienced daughters who can't let their mother or father go. The alert pt. will go along with their wishes because they don't want to upset their family members. Alone they will admit they are tired and just want Hospice so they can die.
I have talked to many families that were insulted and said the "Dr. just gave up on the family member because he is old or only wants to care for people with money.
Some MD's are very honest about a pt's condition yet when they say "we could do this procedure or that, but it would be painful and I don't want to put the pt. through it" They become the enemy and evil bad person who is withholding care.
In trying to provide compassionate care, I have encouraged the family to put themselves in the pt's shoes. They will not, or can not do so. They want everything possible done to save the pt's. life. (just like a young person)
They will believe what they want to believe. Sometimes I feel like I can't win no matter what I say.
I am the son of an elderly patient in an LTACH. My father has been in his stupor for about 4 months now and I would imagine if he lives he will be just the type of patient to which OP is referring- he has a peg tube and a trach. I feel like my perspective is valuable here and I hope that some of you nurses take serious what I have to say because there is much more animosity in health care than there needs to be. There are already too many deep structural flaws in the system for people to add insult by going around thinking wrong things and hating each other. That cannot do the patient any good.
I accuse the OP of reading too much into situations that she both doesn't know enough specifics about or considered broadly enough. First of all I will remind you that THE FAMILY IS BIGGER THAN THE SINGLE POA. I have brother's and sisters. Some of us want dad off the life support (including me) and some don't. Then there are his brother's and sister's. You get enough people in a close family and I guarantee you someone, without any financial motive, is going to be screaming bloody murder if you try to withdraw support. And when you do feel it's time to withdraw life support it's very often not a slam dunk easy decision. So you have me in the trenches visiting all the time looking for signs of hope but seeing fewer and fewer while other people adamantly insist that he stays alive because sick beats dead- very hard to match a pro lifer's intensity trying to go against that argument. I feel like I have to have consensus at least among the children before we withdraw support. I am not listening to "you killed our father" for the rest of my life. If he was in pain I would bear that burden but not while he is just out of it. So when you see someone being unreasonably kept alive by "the family" that could very well mean just one person out of many, one person who just can't bear the thought.
Point two- health care providers give many mixed messages that confuse family members. It has taken me months to believe that my father is not making it out of this situation to any good place. Yes some doctors told us to expect this. Others regaled us with stories of miraculous recoveries- not to mention the way they cover their butts by saying "you never really know anything can happen with the brain" when giving the supposed real deal. Then there have been so many nurses and techs who say keep trying they can come out of it. So the family's OP refers to are often given unrealistic hope by people in authority. They don't know what you know OP- they know what they've been told. Many of them go around thinking that one day their loved one will snap out of it. I know that you, OP, know better but often times they really don't. Unfortunately you can't just point to the patient and tell the family "this is as good as it gets". Things that are obvious to experienced nurses are not so to lay people.
On balance, no matter what income the patient has (except in some rare cases) the net effect of this situation is financially devastating to the family. If you have money before you have to spend it. If not then they take whatever little you have. Loved ones have to spend soooo much time traveling and taking time off work to deal with not just the patients sickness but things from their old life too. That person in the coma had bills I guarantee you that. Does medicare cover life bills? No it doesn't. Nobody financially benefits from this except nursing homes and LTACHs. If you can show me someone who has financially benefited from having a loved one in this situation then I want that guy to manage my money because he would have to have a genius that would make Warren Buffett jealous.
I had no idea nurse go around thinking things like this about relatives. OP you are making judgments with VERY incomplete information and with an unnecessarily suspicious bent. If you just saw me visit my father you would probably have no clue as to the hours and hours spent trying to figure out what is best for him and drawn out discussions on whether or not to pull the plug. I think it is a rare case when some small annuity like a pension or SS check is enough financial motive to keep someone alive especially against the patients wishes. If anything in most cases it's when the patient dies that their assets are split up so in that sense what you claim doesn't even add up.
Please be careful when doling out judgments against people who may be going through a private hell watching their loved one slip away. There are lots of ways to arrive at the situation of a peg tube and ventilator/trach. Almost all of those ways involve a very slippery slope and those slopes are all around us and easy to go down if one has never been down this road before. In our case we were not consulted about putting in the food tube- it was done as a matter of course pursuant to other measures.
I can tell you that it is a lot harder to take it out then to not put it in in the first place. Of course you only know that after it's done. When you judge people the way you have your going to wrong so much more often than you will be right. Just do your job. Just help the patient in any way you can.
Specializes in Clinical Research, Outpt Women's Health.
Excellent perspective Patientson. You really made me think from both the medical professional and family member side of things.
The only thing I would say is that not all families are like yours. There are some horrifyingly, amazingly ruthless and greedy people out there that I hope you will never have to experience.
The patients and families like you are why many of us wanted to be nurses in the first place. You are doing a great job under very difficult circumstances.
The real hope/false hope issues you raise are real and troubling for everyone because yes, every once in a blue moon a miracle does occur and someone who should have never recovered does. And yet that is very, very rare.........
I wish i had some answers to the issues you raise, but I don't. My personal philosophy is to tell people the truth as much as possible within the constraints we must function with.
All the best to you and your family and obviously very well loved father.
CrunchRN, ADN, RN
4,556 Posts
It is sad. Inhuman really.
However, along with the financial issue is the "right to life" issue which many people passionately believe in no matter what a horror that so called life is.
makes me sick. I try to find understanding in my heart because I believe they think they are doing the right thing, but realistically I almost hate them.
This is a major reason I think I don't do acute ot LTC. I just found it to depressing even before I became a nurse (rer-nursing worked many years in the hospital).