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Patient doesn't know he's terminal

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I don't mean to be an A-hole....but we are all dying. right after we are born, we start to die.

So help me to understand here......if this Pt ask if he is dying....would you say yes ? Then if he ask how long does he have.....what do you say then ? Do you give a timeline ? At what point do you draw the line ?

OldnurseRN

Specializes in ED, Med-Surg, Psych, Oncology, Hospice. Has 30 years experience.

If it were me I would hope my family never loves me that much that they would withhold my prognosis from me. Perhaps I will have things I want to clear up, finish, or "make right". Maybe I will have final wishes I have yet to be made known. Who knows? In my practice I can't fully advocate for nor holisitically treat my entire patient if I'm forced to withhold something that may or may not come up. A patient with their full faculties and in control of their own life has the right to know of a terminal diagnosis and poor prognosis. My POA for medical purposes knows my wishes, is not a family member, and most importantly WILL carry out what I've chosen, regardless of family pressure to do differently.

Edited by OldnurseRN
grammar error

tewdles, RN

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

I appreciate Kylea's comments..and yes, this is certainly the circumstances sometimes. More often, however, the family is trying to protect their loved one and their decision to withhold the information has nothing (apparently) to do with the wishes of the patient. (in my experience in hospice encountering this scenario)

I completely agree with OldnurseRN who makes the point that there are, many times, things that a person may want to do or say in the time preceeding their death and a family's insistence upon "protecting" that person from the truth may deny them the closure that they need and deserve.

Yes, if someone asks me if they are going to die, I may simply say yes. If (when) they ask me how much longer I am honest with them...I do not know, but I could guess (which I am not inclined to do). I will often ask them how they feel. I will encourage them to "listen" to their own body and their own heart. I stress with patients and families that this process, like ALL of our lives, is individual and unique. I explain that there are signs and symptoms which will give us clues...but there are limits to our ability to KNOW a specific time frame.

The lines I "draw" are determined by the needs and goals of the patient, the family, and my professional credibility and responsibility. The anticipatory grief of a family can significantly affect the end of life care of their loved one...it is not uncommon for the bereavement team to begin their intervention in advance of the death when these sort of issues become apparent.

aKyRN81

Has 29 years experience.

. In fact, it was a norm here in the US just a generation ago to just do as you were told regarding health care. Some of the "old timers" here remember this.:uhoh3:

I remember when it was also thought that the woman who had delivered a stillborn would ' do better' if she never saw or held the baby. That also was a 'norm' back then which was not beneficial to the patient.... Sometimes progress is a good thing and deception or avoidance are not......

often, a pt will tell me they 'know' something is wrong but no one is telling him/her anything...

and then will ask me, am i dying?

regardless of family/poa wishes, i always tell pts the truth.

(only when pt has indicated they want to know.)

families try to protect their loved ones from any sort of physical, mental, emotional injury...

as well as often projecting their own fears of dying.

what most don't realize, is dying is a process, and there are 'tasks' to be done.

yes, many pts opt to bow out of this 'process' and choose to remain drugged.

but there are just as many who want/need to finalize their life, which necessitates whatever the pt deems important.

we owe it to our pts, to be sensitive and truthful.

and while we promised to "do no harm", that is ironically what we end up doing, when we take away a pt's RIGHT to manage their death.

leslie:twocents:

tewdles, RN

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

well said leslie

LiverpoolJane

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

I don't know if it is different in the US than the UK but generally the Dr would not tell the family anything the patient didn't know unless the situation was that the patient doesn't want to know but the Dr feels that the family should be aware of the situation.

My dad went for one of his routine check ups and the Dr went through his results - his PSA getting worse etc, he then asked my dad if he had any questions, my dad said no. He asked my dad if it was ok for him to speak to my mum alone, my dad said that it was and left the room. I don't know what was said to my mum but my dad never asked. I'm grateful to the Dr for doing that, and this is the tpye of situation I come across in my work. I would hate to think how my dad would be like if regardless of whether he wanted the information or not it was given to him. If my dad wanted to know he has had ample opportunities to ask, and he would have been told the truth, by the Drs or his CNS.

nursel56

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

I don't know if it is different in the US than the UK but generally the Dr would not tell the family anything the patient didn't know unless the situation was that the patient doesn't want to know but the Dr feels that the family should be aware of the situation.

My dad went for one of his routine check ups and the Dr went through his results - his PSA getting worse etc, he then asked my dad if he had any questions, my dad said no. He asked my dad if it was ok for him to speak to my mum alone, my dad said that it was and left the room. I don't know what was said to my mum but my dad never asked. I'm grateful to the Dr for doing that, and this is the tpye of situation I come across in my work. I would hate to think how my dad would be like if regardless of whether he wanted the information or not it was given to him. If my dad wanted to know he has had ample opportunities to ask, and he would have been told the truth, by the Drs or his CNS.

I think that would be true here, also. There would probably be the exceptions based on age, level of consciousness,etc. A competent adult has the the first right to be informed if they choose to be. I've got the same situation with my mom- I asked her over Christmas what her latest scan results were, and she said, "I don't know and I don't want to know!". She doesn't have any problem with me seeing them, though. I figure that just like she has the right to know, she has the right not to know if that is her choice.

rngolfer53

Has 2 years experience.

I think that would be true here, also. There would probably be the exceptions based on age, level of consciousness,etc. A competent adult has the the first right to be informed if they choose to be. I've got the same situation with my mom- I asked her over Christmas what her latest scan results were, and she said, "I don't know and I don't want to know!". She doesn't have any problem with me seeing them, though. I figure that just like she has the right to know, she has the right not to know if that is her choice.
(emphasis added)

But, when we get those notes that say "Don't tell the Pt you're from hospice" it indicates to me there's a pretty good chance the Pt hasn't been given a real chance to indicate what his/her choice is.

nursel56

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

(emphasis added)

But, when we get those notes that say "Don't tell the Pt you're from hospice" it indicates to me there's a pretty good chance the Pt hasn't been given a real chance to indicate what his/her choice is.

My comment about my mom was really more a personal anecdote than a statement about terminal patients in general. Because I know my mom, I know nothing is being withheld from her that she as a competent adult should know, and if she changes her mind, she has the legal (I think, but I'm not a lawyer) and moral right to all information about her health.

I'm not a hospice nurse, either- so forgive me if these are silly questions, but if you got a note that said, "don't tell the patient you're from hospice" and the patient is not impaired cognitively, wouldn't there be a meeting, conference or written document that provided more detail about why that is? I as a nurse would probably want to know more than that, as it would tell me quite a bit about the patient and the family. I would be very uncomfortable as part of a "conspiracy of silence" if I felt the patient in question was being denied the choice- If the patient seemed bewildered or cajoled or manipulated by family-- then the advocate role would kick in and I'd feel obligated to speak up on their behalf.

BTW, hospice is literally a godsend in the vast majority of cases. I've been working home health- and more than once needed to use hospice-like skills. So that's the specialty I'd probably choose now, it didn't exist by name when I was in school way back. . . um. . when. :)

stellina615

Specializes in Med-Surg/Oncology, Psych. Has 1 years experience.

This is a really interesting thread. I suppose the one question I'd like to add to the mix is, if a patient isn't fully aware of his or her diagnosis/prognosis, how can he or she make informed decisions about selecting a course of treatment or lack thereof? To give an example, I probably wouldn't want to change my code status to DNR if I thought I was hospitalized with back discomfort and a headache that would pass in a few days. I might feel differently, though, if I knew that I had renal cancer with mets to the bones and brain.

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.

tewdles, RN

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

My comment about my mom was really more a personal anecdote than a statement about terminal patients in general. Because I know my mom, I know nothing is being withheld from her that she as a competent adult should know, and if she changes her mind, she has the legal (I think, but I'm not a lawyer) and moral right to all information about her health.

I'm not a hospice nurse, either- so forgive me if these are silly questions, but if you got a note that said, "don't tell the patient you're from hospice" and the patient is not impaired cognitively, wouldn't there be a meeting, conference or written document that provided more detail about why that is? I as a nurse would probably want to know more than that, as it would tell me quite a bit about the patient and the family. I would be very uncomfortable as part of a "conspiracy of silence" if I felt the patient in question was being denied the choice- If the patient seemed bewildered or cajoled or manipulated by family-- then the advocate role would kick in and I'd feel obligated to speak up on their behalf.

BTW, hospice is literally a godsend in the vast majority of cases. I've been working home health- and more than once needed to use hospice-like skills. So that's the specialty I'd probably choose now, it didn't exist by name when I was in school way back. . . um. . when. :)

IMHO you are on the money...when considering what you coined the "conspiracy of silence". In my experience these requests for deception are frequently based upon a family member's difficult grieving process. They protect themselves by projecting that "protection" upon the family member. Hospice is well designed to meet these challenges with the multidisciplinary approach. The most difficult aspect of these cases occurs when families don't want you to be straightforward with the patient AND they want to refuse all other disciplines besides nursing. These cases can be draining for the nurse who is trying to meet the needs of a (inappropriately) grieving family and a symptomatic patient without the support of his/her team.

We cannot help all of these families to have a peaceful outlook on this process of death, but we can help many of them if given enough time. I continue to have great success in helping these families by advocating for their presence at IDT and arranging team meetings in the home. There is soooo much about hospice care and philosophy that the lay public is simply unaware of...

OldnurseRN

Specializes in ED, Med-Surg, Psych, Oncology, Hospice. Has 30 years experience.

It's been years since I worked for hospice but, the main tenet of the program back then was that the patient had to be aware of their prognosis and terminal status. Hospice was a fairly new program in the U.S. at that time.

KaroSnowQueen, RN

Specializes in Telemetry, Case Management. Has 30 years experience.

Its been more than 10 years ago, we had a patient who was terminal. The patient didn't know. The family said if we told her "she would just give up" and they thought if she didn't know, they would have more time with her.

We were all uncomfortable with this, as the patient was awake, alert and perfectly aware, and was a non-nonsense type of person.

She asked one of the night nurses, "Do I have cancer?" He told her yes. Then she asked, "Am I dying?" and and he said yes again. They physical difference in her within 24 hours was appalling. And in less than a week we were at her funeral.

If I remember correctly, the family was quite displeased that she had been told.

tewdles, RN

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

Its been more than 10 years ago, we had a patient who was terminal. The patient didn't know. The family said if we told her "she would just give up" and they thought if she didn't know, they would have more time with her.

We were all uncomfortable with this, as the patient was awake, alert and perfectly aware, and was a non-nonsense type of person.

She asked one of the night nurses, "Do I have cancer?" He told her yes. Then she asked, "Am I dying?" and and he said yes again. They physical difference in her within 24 hours was appalling. And in less than a week we were at her funeral.

If I remember correctly, the family was quite displeased that she had been told.

Bereavement will have to deal with the unhappy family. If the family wants people to lie to their alert and cognitively intact family member in the face of a direct question they should be prepared to stay with the patient 24/7 so that they can accomplish that. It is completely unacceptable for a family to expect that a professional will flat out lie to their loved one simply because they "said so". Their desire to "have more time" with her is fine, but doesn't exactly include what the patient desires...and that is more important, frankly.

I would guess that the woman you describe experienced the decline and death that she had in mind for herself, and that (at least to some degree) is hospice philosophy. Families do not always have the same goals as the dying patient.

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

StayLost, BSN, RN

Specializes in CVICU, CCU, Heart Transplant. Has 5 years experience.

As someone that has a crazy family & a possible future patient, please DO NOT lie to me about my health status. Please advocate for me and my right know what is going on with my body, especially if there is little time left! I AM NOT a child and and have the right to make choices about my course of treatment. There may be something I want to do or a relationship I want to mend before I pass. :)