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Patient doesn't know he's terminal

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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 are 100% correct that it would be cruel if a hospice nurse (or anyone else) dishonored her wishes.

there is absolutely nothing wrong in reminding any/all hospice nurses, of how she chooses to live out her remaining time.

hugs and heartfelt prayers to you both.

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.

in this instance (where the pt's cognition is impaired), i have to agree with you...

especially where the pt seems "happily ignorant".

my only objection is when the pt clearly wants to know, and the family objects.

then, my loyalties and concerns, are mainly for the pt.

leslie

dudette10, MSN, RN

Specializes in Med/Surg, Academics. Has 10 years experience.

I have a question to those who unequivocally would tell the patient when the family doesn't want you to.

What do you expect to accomplish for the dying patient by telling the truth against the wishes of the family? In other words, what benefit do you see for the patient? What nursing services would you be rendered completely unable to provide if the dying patient didn't know he dying?

In any situation where there are questions, it's a good idea to involve social work and/or the ethics committee. They can speak with the family members and assess the reasoning behind the decision to keep a terminal diagnosis from the patient. Are they self-serving or perhaps mired in denial? Or do they know this person would immediately take a nose dive and hasten the process? One size does not fit all. It's good to have other capable people helping to evaluate what is motivating the request. It may be that the family members are the ones who need help and that can be provided.

There was a doc who delivered each terminal prognosis with the tempering wisdom that, while it was unlikely that the patient would heal from the disease, the timetable varied greatly, and miracles do happen. He left the door open to remission and "granted permission" for the patient to balance dire news with a sliver of optimism. This seems like a good approach as no one, not even the doc, knows exactly what will happen.

Those patients who want to know the gory details can ask. Those who would rather focus on making the most of the time they have left can do that as well.

I have a question to those who unequivocally would tell the patient when the family doesn't want you to.

What do you expect to accomplish for the dying patient by telling the truth against the wishes of the family? In other words, what benefit do you see for the patient? What nursing services would you be rendered completely unable to provide if the dying patient didn't know he dying?

choice!

choice over how pt chooses to live the remainder of their life.

choice as to what pt may choose to tell or ask a loved one;

choice as to finish uncompleted 'projects', and finally attain closure.

choice as to how they choose to die.

with pt not knowing the fate of THEIR life, they are denied precious choices.

who is anyone, to deny them that?

leslie

elizabeth321

Specializes in ER/Geriatrics. Has 24 years experience.

I didn't take the time to read everyone elses responses....all I know is that it is not my place to give a patient their diagnosis and prognosis...I have found in my 28 years of health care experience all competent adults know they are gravely ill if they are...in any event I support them in what ever way they request...if they want to talk I listen...if they have questions I answer what I can....if I truly felt that something unethical was occuring I would advocate for that patient and speak to both the charge nurse and attending physician to get clarity on the situation....sometimes it just means the family doesn't want alot of conversation about death etc...we are all wired differently and the family is the one that has been along the journey of life with the patient and has excellent input into care needs...for the most part.

CT Pixie, BSN, RN

Has 10 years experience.

Didn't get a chance to read all the posts but one question comes to mind...

If the patient is A&Ox3, how is it that his diagnosis was given to his family and not him? If I were admitted to the hospital I'd expect my diagnosis be given to me..not my husband, mother, daughters etc. Unless I signed some sort of paper stating that I did not want to be informed of my condition and that my husband/daughter/whoever was my medical proxy.

Did this patient specifically state he didn't want to know and to tell only his family? other than that I cannot even begin to guess why an alert, oriented, "with it" person did not get his dx directly from his doctors.

dudette10, MSN, RN

Specializes in Med/Surg, Academics. Has 10 years experience.

choice!

choice over how pt chooses to live the remainder of their life.

choice as to what pt may choose to tell or ask a loved one;

choice as to finish uncompleted 'projects', and finally attain closure.

choice as to how they choose to die.

with pt not knowing the fate of THEIR life, they are denied precious choices.

who is anyone, to deny them that?

leslie

Yes, that is definitely a reason to do it. However, I posed the question as unequivocal truth-telling. Leslie, your responses in this thread have shown cognizance of gray areas.

I tend to agree more with rn/writer's perspective after reading all the thoughtful responses in this thread. While I realize that families can be a nurse's best friend or biggest foe when providing care, I think it would be judicious to NOT take on the role of "lone ranger truth-teller."

Wouldn't a better approach be to counsel or get a social worker to talk to the family, rather than railroading the family's decision in the absence of knowing the patient's wishes and personality?

At any rate, some of the anecdotal evidence provided here by excellent nurses who were put into the role of family to a dying loved one--some didn't want their loved one told--indicates to me that family's wishes do have a place in the care of a dying patient, even if the nurse thinks otherwise.

dudette10, MSN, RN

Specializes in Med/Surg, Academics. Has 10 years experience.

If the patient is A&Ox3, how is it that his diagnosis was given to his family and not him? If I were admitted to the hospital I'd expect my diagnosis be given to me..not my husband, mother, daughters etc. Unless I signed some sort of paper stating that I did not want to be informed of my condition and that my husband/daughter/whoever was my medical proxy.

I'd like to know that answer, too, considering all the current privacy laws.

Before the privacy laws, however, things seemed to be a bit different. As an example, I know that my father was told of my mother's diagnosis, and my father told her.

tewdles, RN

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

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.

perhaps you assumed too much from my post?... please note that I have clearly indicated that nurses faced with these situations need to investigate as thoroughly as possible and document...

I provided my professional rather than my personal opinion...

in hospice, the patient is my first priority...the family is the first priority of the bereavement and social work team members...

I do have a responsibility to them, one that I take very seriously...

I don't have any opinion about who should live...that is above my pay grade...

there was a doc who delivered each terminal prognosis with the tempering wisdom that, while it was unlikely that the patient would heal from the disease, the timetable varied greatly, and miracles do happen. he left the door open to remission and "granted permission" for the patient to balance dire news with a sliver of optimism. this seems like a good approach as no one, not even the doc, knows exactly what will happen.

i'm not certain this is a wise approach.

if every dr. instilled even the slightest hint of optimism or hope of remission, we likely wouldn't have anybody utilizing hospice...

which would deny this population, some invaluable services and opportunities they wouldn't have elsewhere.

those patients who want to know the gory details can ask. those who would rather focus on making the most of the time they have left can do that as well.

it's interesting the distinction you made betw these 2 statements...

in that, those who want to know the "gory details", are the ones who usually focus on making the most of their remaining time.

i find it sad, we go to the extremes that we do, in avoiding the realities of our mortality.

and fwiw, any hospice nurse worth his/her salt, would do just as good a job as the social worker,( if not sometimes, even better), in assessing pt/family dynamics.

afterall, we are the ones who are with them, til death do us part.

leslie

there was a doc who delivered each terminal prognosis with the tempering wisdom that, while it was unlikely that the patient would heal from the disease, the timetable varied greatly, and miracles do happen. he left the door open to remission and "granted permission" for the patient to balance dire news with a sliver of optimism. this seems like a good approach as no one, not even the doc, knows exactly what will happen.

i'm not certain this is a wise approach.

if every dr. instilled even the slightest hint of optimism or hope of remission, we likely wouldn't have anybody utilizing hospice...

which would deny this population, some invaluable services and opportunities they wouldn't have elsewhere.

let me clarify. he didn't sugarcoat reality to the point that it was no longer real. his terminal patients knew the score. but they also had a glimmer of hope at the moment of hearing the grim prognosis. this was like lighting a candle in a dark room, serving to soften the blow and let the patient and family take in the news at a pace they could manage.

as the candles burned down, the patients could see what was happening and avail themselves of all kinds of end-of-life services and rituals. for a fortunate few, the candles lasted until the light of dawn. they did go into remission or a new medication bought them more time. but for most, the candle dimmed and sputtered out while it was still night.

his purpose in doing things this way was to avoid "sentencing people to death." he told them what they could expect as their disease progressed so that they would recognize the mileposts along the way. but he also told them that he could not--and would not--predict how quickly or slowly these things might happen. he was clear but tender. when you start feeling short of breath, it will be time for us to get you on some oxygen. if you can't climb the stairs at night, we can see about getting you a hospital bed for your den." but he would encourage them to take the time they had left and enjoy as much as they could rather than dwelling on what was to come.

he loved hospice before it was widely accepted and thought the patients should have whatever they wanted and could tolerate right up until the very end.

as for the reason why a family might be told something a patient doesn't yet know, this happens all the time after surgery. the doc comes out to the waiting room and says he found cancer that was too widespread to remove. or there was some other complication that is ultimately incompatible with life.

if a family said they didn't want the patient to know, that's when the evaluation should start. are they looking out for the patient or for themselves? are they trying to spare their loved one a shock because they themselves are reeling and don't know how to break the news? are they misguided in their good intentions and underestimating the person they are trying to protect? or do they truly know this person better than we, the caregivers do, and do they strongly feel that their loved one would rather be spared the news.

i just don't think there are any hard and fast rules other than we need to take the best care we can of the patient. sometimes that involves finding out more than meets the eye.

i can't see that i'd ever outright lie to a patient who asked if he was terminal. i think i'd do what others suggested and toss it back to the patient. "why do you ask that, mr. williams? is that something you're concerned about?" hopefully that would open the door to his thoughts on the matter, and i or someone else on the team could let his doc and his family know that he knows the truth and wants to talk about it or he expressed a desire not to know and would just prefer to keep things as they are.

in this business of doing what the patient chooses, it's sometimes a delicate matter to find out exactly what that is without spilling the beans and making the choice for him.

I have had several patients ask me, not long before they died, if I thought they were going to die. Like I was taught in school, I "tossed it back" to them". I told one patient (about 8 hours before he died) that he was going to die. I feel very badly that after giving him an honest answer I had to leave him alone in his dimly lit room to die by himself. I could tell he really wanted the truth. I think he knew he was going to die and just needed it out in the open. I felt better about being honest than lying but I dont know what I will tell the next one even though I know what I am "supposed" to do. I think at times it is OK to turn the question around and but are times when someone asks a direct no BS question they really need a direct no BS answer. Some people ask if they are going to die because they are afraid and need reassurance that they are not while others need to know the truth so they can deal with it. For me it is a tough thing and I am not 100% sure that telling someone the truth is always the correct thing to do and likewise not telling them. It is strange in our culture that being honest to a dying person is the exception while lying (avoiding an honest answer) is the rule. That is what is taught in nursing school (tossing the question back).

Edited by nursenow

I have had several patients ask me, not long before they died, if I thought they were going to die. Like I was taught in school, I "tossed it back" to them". I told one patient (about 8 hours before he died) that he was going to die. I feel very badly that after giving him an honest answer I had to leave him alone in his dimly lit room to die by himself. I could tell he really wanted the truth. I think he knew he was going to die and just needed it out in the open. I felt better about being honest than lying but I dont know what I will tell the next one even though I know what I am "supposed" to do. I think at times it is OK to turn the question around and but are times when someone asks a direct no BS question they really need a direct no BS answer. Some people ask if they are going to die because they are afraid and need reassurance that they are not while others need to know the truth so they can deal with it. For me it is a tough thing and I am not 100% sure that telling someone the truth is always the correct thing to do and likewise not telling them. It is strange in our culture that being honest to a dying person is the exception while lying (avoiding an honest answer) is the rule. That is what is taught in nursing school (tossing the question back).

i appreciate your post nn, because it shows the ambiguities in talking about death.

and while i do not believe anyone should ever bluntly and abrasively respond with, "yes, you're dying", it also frustrates me when we use that "what do YOU think" baloney.

i agree, that it takes careful and astute assessment, in determining what the pt REALLY wants to know...

which just cannot be answered in the first interaction.

afterall, these are not just 'questions', rather, they are journeys the pt takes.

one should never answer these types of questions, until the nurse is 100% confident in knowing if the pt wants the truth or not.

until the nurse 'knows', then yes, respect family wishes to not disclose.

more than anything, pts can detect when a nurse (or other) is being evasive or disingenuous.

it is often an easy way out, to just rely on what the family says.

but i ask you this: who is the nurse really protecting, when readily accepting what the family says, and w/o knowing what the pt really wants?

it is imperative to keep in mind, and as always, it is the pt's life and death...and no one else's.

leslie

If the family said don't tell someone they are dying, I would not put my wants and needs ahead of the families and tell. How can a nurse conclude his/her opinion in this situation is more important/informed than the families. The family has known that person their whole life. I would happily step aside and let someone more informed than me (at the facility) make that call. The patients I have dealt with in this situation had no family that even wanted to be with them while they died. Kind of sad.

Another thought; If a patient spends their life involving their family in all aspectd of their life, sharing everything with them, it almost seems like the death isn't just the patients. it is just as much the families? It will have a profound affect on the people not dying. Not saying that is the way it is, just wondering.

tewdles, RN

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

NN, I think you make valid points. I do, however, think that not all families are acting in the best interest of the patient when they make these and other choices about hospice care. Check that...I KNOW that not all families have the patients best interest in mind when they make these choices. Any professional who has worked with terminal patients in hospice has encountered families which are so broken and dysfunctional that it is heartbreaking and difficult to actually care for the patient because of it.

I have to honestly say that putting the NURSE'S wants and needs ahead of anything is not really in question here. It is not about what we want, it is about determining what the patient desires and what is best for them.

The vast majority of families I have dealt with in hospice have been wonderful, sad, and thankful. However, there are some doozies which are so focused upon themselves that they cannot begin to see the needs of the loved one.

Tragedies abound where the patient is in constant pain because the family feels that the opioids make him too sleepy, the patient is constantly nauseated because the family insists on continuing tube feedings regardless of the patients cries of "enough", the patient is an anxious/nervous wreck because a family member doesn't agree with use of benzodiazepines...tragedies where the patient knows that he is dying but cannot speak with anyone about it because it is forbidden by the fearful family.

As hospice professionals, we cannot fix these broken families. We can only walk a short path with the patient and family and hope to provide some respite from the symptoms and fears or anxieties along the way.

When I encounter a dying patient with a family who begins the hospice encounter with the mandate that no discussion of death, dying, or the mention of hospice is allowed...my radar goes active... It then becomes part of my job to discover why the family feels this way, what the patient actually knows and is capable of comprehending, and what the patient wants...

I do not deceive families about my actions or agenda. I am on no mission to have MY will done at the end of a person's life. Dying is a process that involves the patient AND the family. If the family is having trouble effectively processing the terminal prognosis of the patient we are compelled to help them.

You are correct that these deaths are not the property exclusively of the patient. My mother's death was also my loss, my siblings', and my father's. It changes who you are...I once had a mother and now I do not, I am now motherless... These are truths that hospice is very focused upon, we often have contact with the bereaved family members for a much longer period of time than we had with the hospice patient! We encourage their participation in the care, we value their opinions and insight.

We do strive, however, to prevent their fears and failures and misinformation from negatively impacting the care of the patient...it is, afterall, the patient's life and death FIRST. If the family will not allow me to provide good evidenced based care for their loved one they will get exactly the care that they will allow me to provide. When that happens I resort to the only tool I have left...I pray for a peaceful and graceful death for the patient...and peace for the family.

thank you, tewdles.

of course i agree with all you said.

i do not want anyone misunderstanding me.

of course, the family is a major part of the hospice/dying process.

my concerns are certainly not limited to the patient only.

but as tewdles stated, there are dysfunctional families that knowingly or not, interfere with a peaceful, comfortable death.

and just as often, even though pts will confide in me, sharing their personal wishes, they will make it just as clear that i am to go along with what the family wants.

these pts do not wish to make waves, for whatever reason, and complacently suffer.

that too, has to be honored.

it should never, ever be about the nurse's "will".

the dying process ultimately brings out the best and the worst in us.

and as tewdles stated, most families are fine with medicating, often after repeated education and input from the nurse.

my point is, it should always be about what the pt wants.

and more often than not, that takes a trusting, intimate relationship where the pt feels safe in telling you their dreams, their regrets, their hopes... all of it.

that always takes determination from the nurse in discovering and ensuring, their pts get all they want and deserve.

there is no clear-cut path to get from point a to point b, as our relationships are as unique as the pt's/families themselves.

but if the nurse's intent is about the aforementioned, this is usually very healing for the dying pt...

that while they may have suffered inhumane anguish, they also die knowing that they were heard and understood.

and to both of us (pt/nurse), that is the ultimate in a dignified death.

leslie