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Patient doesn't know he's terminal

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nursel56

Specializes in Peds/outpatient FP,derm,allergy/private duty. Has 34 years experience.

this thread reminds me of when my mom was dying.

she had been dx'd w/all and became septic as a result of being immunocompromised (chemo).

she was unconscious and i was pushing to get all txs dc'd, and to start her on a morphine gtt.

her pcp, oncologist and palliative director, held a meeting, actually pressuring us to continue with everything, in essence so she could "possibly" wake up and say her good-byes.

i slammed my foot down, adamantly maintaining that mom would never want this...

that to leave her unconscious (and unaware) would be kindest and truest to what we knew of mom.

why am i writing this?

haven't a clue.

leslie:o

Your mom is probably up in heaven thanking you for not allowing these people to bully you into what you knew your mom wouldn't want. They were saying that they knew better than your mother's own family about her process of saying her goodbyes. :mad: grrr I don't think my mom's oncologist would do that- thank God. But when her time comes I won't hesitate to get right up in their faces, either.

Tewdles- thanks for providing more detail about the internal workings of hospice care. There's a lot to learn about family dynamics and the impending death of a relative seems to bring whatever dysfunctional stuff that had been simmering right up to the surface, and you probably want to grab these people by the shoulders and say, "what are you thinking??" but that's not an option. .sigh. . .

Once you get your license you are the PATIENT ADVOCATE- and lying to a patient about his condition is unethical especially if he is competent. As a student however, its a good issue to bring up with you instructor during post conference- Under no circumstances should you inform the patient about his diagnosis especially when you've already been told not to. I guarantee- since clinical sites are so difficult for schools to secure, you'd probably be reprimanded at best, at worst kicked out of the program. At the school I graduated from, theyd kick you out especially if the family and hospital complained. Just a word to the wise...

jnette, ASN, EMT-I

Specializes in Hemodialysis, Home Health. Has 10 years experience.

Wonderful, wonderful thread. Thank you all for ALL your well worded insight and input. :)

this thread reminds me of when my mom was dying.

she had been dx'd w/all and became septic as a result of being immunocompromised (chemo).

she was unconscious and i was pushing to get all txs dc'd, and to start her on a morphine gtt.

her pcp, oncologist and palliative director, held a meeting, actually pressuring us to continue with everything, in essence so she could "possibly" wake up and say her good-byes.

i slammed my foot down, adamantly maintaining that mom would never want this...

that to leave her unconscious (and unaware) would be kindest and truest to what we knew of mom.

why am i writing this?

haven't a clue.

leslie:o

phew....talk about a brain boof.

the reason i wrote this, was to show you that there are indeed, some folks who truly don't want to know they are terminal...

such as my mom.

heck, she fought the aging process from waaaaaay back, even asking me as a child, "do i look old"?

and even in her 60's...."do i look old"?

granted she was a beautiful woman, albeit a bit too vain for my taste.

but she sooooo didn't want to ever, ever look old.

and i remember looking at her, and stroking her hair while in the icu bed...

thinking to myself, how amazingly young she looked.

i mean, her skin was so taut...not a wrinkle or sag to be found (she was 74)...

only to find out after her death, my sister told me she had microdermabrasion (sp) done.

little rascal...she led us to believe she was au naturel.:lol2:

anyways, if a pt doesn't want to learn of their terminality, that truly needs to be honored.

leslie

ktwlpn, LPN, RN

Specializes in Med Surg, Homecare, Hospice.

I'm still lost here. How does the OP know that the Pt. was not told or that the Pt has asked not to be told ?

I'm reading the different replies here, but I don't think anyone would say to not tell someone of the severity of their condition, but there has to be something in place (written or verbal) for the family or the PT to not want to hear the news. If not, this is a lawsuit waiting to happen. The doc can't just arbitrarily hold information.

The OP stated this happened in her clinical. I'm sure there were notes all over that chart and it was probably the talk of the unit. At the very least this info was passed on in report. I've seen this a few times and it happened in my own family,too. There are doctors that will bow to this type of pressure from family members -they would rather avoid confrontation then advocate for their patient. I'm in LTC now and have family members who will call their loved one's doctor and dictate their care from hundreds of miles away. They want to control-they want to d/c or order meds,they want to d/c PT,they want 4 ensures daily etc. And the doc COMPLIES. It's often detrimental to the resident and takes days to fix-We have had to call the DOH more then once.It happens. Sure-it's "a lawsuit waiting to happen" It's the family that will say "If you tell Pop he's dying I'll sue you...

ktwlpn, LPN, RN

Specializes in Med Surg, Homecare, Hospice.

In clinicals today there was a pt. who had been in hospital for about a week. He was not aware he was terminal with cancer, but the family was aware. They had not told him yet and didn't want the staff to tell him about his dx. The pt was cognitively/emotionally intact. How can a pt. not be informed of his serious health situation, and what right does the family have to withhold that from him?! As a nurse, how can you be asked to lie to a patient if they ask how they are doing, believing they just have a minor health problem that they will recover from when they are actually terminal?

I was wondering if you have been back to your clinical site? Do you know if this situation has been resolved?

It is not about the nurse being unhappy about the situation. It is about the families right to do what they are doing. Sometimes you just have to stay detached and let things play out. If you can't, it makes life difficult at times as a nurse. Especialy when you don't have all the facts. This is one of those situations where you have to accept the fact that someone else with more information and in a different position than you will deal with it.(even if it is the family)

I was wondering if you have been back to your clinical site? Do you know if this situation has been resolved?

Yes I heard it was resolved. I was more interested in the scenario than in the specifics of this case because I'm sure it happens a lot.

LiverpoolJane

Specializes in Dialysis, Nephrology & Cosmetic Surgery. Has 21 years experience.

Yes I heard it was resolved. I was more interested in the scenario than in the specifics of this case because I'm sure it happens a lot.

Could you tell us if the patient had given any indication that he didn't want to know or if the patient had asked questions of the medical staff and been lied to?

I have not experienced anyone being told lies to direct questions, I have experienced patients who have said that they didn't want to know or have declined the opportunity to ask questions about their condition.

I have experienced relatives being kept in the dark at the patients request, which brings problems when the patient is deteriorating and the family are very concerned and asking for answers.

tewdles, RN

Specializes in PICU, NICU, L&D, Public Health, Hospice. Has 31 years experience.

It is not about the nurse being unhappy about the situation. It is about the families right to do what they are doing. Sometimes you just have to stay detached and let things play out. If you can't, it makes life difficult at times as a nurse. Especialy when you don't have all the facts. This is one of those situations where you have to accept the fact that someone else with more information and in a different position than you will deal with it.(even if it is the family)

The problem is that sometimes the family does not have the RIGHT to do what they are doing! The nurse is the professionally designated patient advocate...it is part of our job to make sure that the care provided is in the best interests of the patient, yes?

LiverpoolJane

Specializes in Dialysis, Nephrology & Cosmetic Surgery. Has 21 years experience.

The problem is that sometimes the family does not have the RIGHT to do what they are doing! The nurse is the professionally designated patient advocate...it is part of our job to make sure that the care provided is in the best interests of the patient, yes?

The OP doesn't actually say what the family are doing though. There is nothing to suggest this man has been lied to, he may well be the type of person that would rather not know. I have asked the question of the OP, it the man had asked and not been told the truth, he may well be happy for his family to be in control. I have nursed patients who I have known are terminal and have gently probed what their understanding of their condition is. Sometimes they are keen to know everything and will ask direct questions other times it is clear they would rather not know if it is a bleak outlook. As patient advocate it is my job to ensure the patient is not subjected to being told facts they don't feel able to accept. It is a burdeon for the family having to keep this knowledge to themselves and act normal in front of their loved one, so I really can't see form the OPs senario that the family are not acting in the patients best interest.

tewdles, RN

Specializes in PICU, NICU, L&D, Public Health, Hospice. Has 31 years experience.

The OP doesn't actually say what the family are doing though. There is nothing to suggest this man has been lied to, he may well be the type of person that would rather not know. I have asked the question of the OP, it the man had asked and not been told the truth, he may well be happy for his family to be in control. I have nursed patients who I have known are terminal and have gently probed what their understanding of their condition is. Sometimes they are keen to know everything and will ask direct questions other times it is clear they would rather not know if it is a bleak outlook. As patient advocate it is my job to ensure the patient is not subjected to being told facts they don't feel able to accept. It is a burdeon for the family having to keep this knowledge to themselves and act normal in front of their loved one, so I really can't see form the OPs senario that the family are not acting in the patients best interest.

I certainly have no disagreement with this. I simply caution newer nurses that they cannot assume that what the family is doing is actually their "right" or is in the best interests of the patient. I would encourage nurses faced with this too common delimna to investigate the facts, document them clearly in the chart so that those coming behind you are well informed, and advocate for the patient.

I simply caution newer nurses that they cannot assume that what the family is doing is actually their "right" or is in the best interests of the patient.

good point, but you have to admit, this is not confined to newer nurses.

sadly, there are many experienced nurses who will advocate for the family first.

i see this in hospice waaaaaay too much.

and it doesn't help that the pt often 'bows out' of any relevant discussions re their care...

that they choose to remain passive and let the family make the decisions,

usually because it's much too exhausting in trying to fight for themselves.

and that's where our voices come in.

or so they say...

leslie

Scrubby

Specializes in Operating Room Nursing. Has 6 years experience.

Moments like these can be hard especially on your emotions, mainly your empathy for the patient. It is hard to look at someone knowing full well that they are not going to survive their condition and knowing that they have no idea that they will be passing over soon due to their illness. It comes down to following the families wishes, if they request your confidentiality in the matter then it is the right thing to do in doing so. If the patient begins to ask questions to which you feel you are not able to lie or change the subject or avoid the truth of then it is best that you tell the patient that you will ask the doctor to speak with them as the doctor will be able to give more informative answer than you are able to due to you not being aware of the full information at that time (even if you do know everything) this way you don't have to lie to the patient and it will be up to the doctor whether or not the patient is informed. Many conditions that are terminal can be excelled by factors such as the patient being stressed, this is another reason that the family may wish for the patient to not know, they probably want him to go peacefully in his sleep rather than lying awake regretting things in his life that he didn't get to do knowing that he will be passing away soon.

So your saying that the families wishes come first before the patient then? Hand on I thought nurses were supposed to put the patient first, family second?

I think your making the assumption that the family will always have the best intentions for the patient. I don't work in hospice but I have seen first hand incredibly selfish some family members can be. For example walking into a room to find a dying woman's daughter who was a health care worker (not a nurse) forcing her semi unconscious mother to sit up in a chair which was not treating my patient with dignity.

If it came down to it and a patient asked me if they were terminal I would NEVER take the cowards way out like your advocating and pass the buck onto the doctor. Patients have the right to information.

In the OP's situation if the patient doesn't want to know then the truth should not be forced on them. But if they do want to know then despite protests from the family they should be told.

Scrubby

Specializes in Operating Room Nursing. Has 6 years experience.

Just want to add that my spelling and grammar are particularly atrocious today. I have a new laptop and am trying to get the hang of having to use smaller keys :D

My Mum is currently in a hospice and is terminal, she gave me specific instructions a long time ago that under no circumstances did she ever want to know she was dying, her words were "I'd rather die in blissfull ignorance". She also told me that she would hate to know, because instead of spending her last days/hours or whatever she gets on earth, enjoying the family and friends that come to see her, she would be depressed and miserable thinking about her impending doom. When you look at it from that point of view, telling someone seems cruel. You do have to consider that some people do not have any religous beliefs, and therefore believe that this life is all you get, so the thought of dying fills them with great fear and dread and of course sadness at the thought that you will never see their family grow. Even though I know the way things work in hospitals, I have found myself arguing with palliative nurses about their approach when around my Mother. I hear some nurses saying, if they ask then I will tell them, this is fare enough, but when a nurse uses language which would easily tip a dying patient off, especially when in their notes it is expressively requested that they not be told, this I consider stepping over the boundaries. The specific language a particular nurse used in my presence was "you don't need to be in any pain any more" when "you don't need to be in any pain" would have surficed. You can understand my dilema speaking as a relative. All I suggest is that, when a family says that they don't want a relative to know, they are often doing it because they really do know their relative better than you. I know for a fact that I would not want to know either, even if I had a vague idea, I'd rather be like my Mum and go in blissfull ignorance. Oh and I might add that my Mother is not in any pain, she is not suffering, she appears happy, and I know she would tell me if it were otherwise. I am letting her lead us in her death, not the other way around. I have to say, what right do I have to disrespect her wishes.

I have a patient just admitted to hospice and her family requested she not be told. Until this happened I always thought I would be against it but now it doesnt bother me. for one, I honor the families rights and it sounds bad but the patient is happily ignorant. Honestly, I am sure how long she would remember it if they did tell her. Some things she remembers and others she doesn't but she is happy and in no discomfort.

The problem is that sometimes the family does not have the RIGHT to do what they are doing! The nurse is the professionally designated patient advocate...it is part of our job to make sure that the care provided is in the best interests of the patient, yes?

Do you know if the patient assigned that right over to the family? Your job is not to do what you personaly think should be done. Also the family is your patient just as sure as the sick person is your patient and you have a responsibility to them also, "Yes?"

You can not make a call against or for their decision without all the information which at this point in this thread none of us have. Just because YOU think Grand Dad should live doesn't mean it is in the best interest of anyone involved including the patient.