Patient Right to Know

Specialties Hospice

Published

Last week a patient's test results came back and the patient has liver cancer. The family told staff and doctors that the patient NOT be told. Patient is in her 80s and is alert and oriented. Patient and family are Catholic and Hispanic. A family member is her POA.

Doesn't the patient have the right to know?? I have worked in hospice for 4 years and have never met a family requesting the patient not be told of the diagnosis of cancer. It's usually the other way around (patient requests that family not be told).

When brainstorming with staff, some stated this could be a cultural or religious thing. Some stated that family might be worried that if patient finds out, patient will give up or lose hope.

Has anyone ever come across something like this? If the patient were to ask the Dr what she has, doesn't the Dr HAVE to tell her, regardless of the family's request? Doesn't the patient have the right to know she has cancer?

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Specializes in psych, addictions, hospice, education.

Chances are the patient already knows.

I've had this experience with hospice patients and their families. It puts you in a spot, doesn't it? If the patient is alert and oriented, it seems to me she has the right to know, but the family is your client too in hospice. Maybe get the chaplain and/or social worker involved?

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Specializes in retired LTC.

This happens frequently. It's tough on the staff to play middleman.

I've seen this same thing happen when family decline having a priest come for Last Rites. "Oh, the pt will give up" is the usual reason given by family.

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Specializes in L&D, Hospice.

I have seen similar cases quite a few times. Some times it was denial on the side of the family, some times over-protectiveness, some times selfishness... the reasons are many and for those working with death and dying on a regular basis often hard to understand.

Over the years I have come to the conclusion that each family has their patterns of dealing with unpleasant events. Those patterns are not easily changed and much less broken! It takes a lot of patience and understanding, listening and feeling for the right moment, when some family member (or the patient) dare to open the door a crack. The patients often know and do not dare to talk about it either. As long as we value life on this earth more than honesty, as long as we play pretend games, we as the caretakers of patient as well as family have to be patiently and gently pushing toward a place of rest for all. Not an easy job!

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Specializes in kids.

Do you have an ethics committee? They may be able to help with this.

If she is alert and oriented, should she not have the right to get her affairs in order? Does she have a DMPOA?

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Specializes in Acute Care, Rehab, Palliative.

Where I work the POA only has the right to make decisions if the patient is unable. If the patient is alert and oriented the doctor will deal with them directly and they are told the truth about their condition. I do believe the the patient has the right to know.

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I have had a pt where they did not know they were dying as per POA. Similar demographics to your case. We respected the POAs wishes....it had already been decided when she was admitted so I'm not sure if there was some decision process before. I think its case-by-case. With mine I don't think it would have changed anything had she known. Mind you if the pt asks, I don't think I could lie.

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And sometimes we are asked to not say 'hospice' or wear a company badge. Of course many times the gig falls apart as the family forgets or speaks out loud about the disease, utters the word hospice, or tires of the charade.

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Do you have an ethics committee? They may be able to help with this. If she is alert and oriented should she not have the right to get her affairs in order? Does she have a DMPOA?[/quote']

Yes, she's alert and oriented and does have a DMPOA. But the DMPOA doesn't matter right now because patient is still decisional. That's why I'm so confused. Patient should be told everything that's going on. I feel that family doesn't have the right to hold that info back from her.

If I were in that patients shoes, I'd be ticked off if family and medical staff didn't tell me what was going on!

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I have had a pt where they did not know they were dying as per POA. Similar demographics to your case. We respected the POAs wishes....it had already been decided when she was admitted so I'm not sure if there was some decision process before. I think its case-by-case. With mine I don't think it would have changed anything had she known. Mind you if the pt asks I don't think I could lie.[/quote']

I wouldn't be able to lie either. If asked, I would tell the patient that I'll have the doctor come in and discuss it with her. I wouldn't want to be the one to tell her, especially if there's some legalities to all this and I could get in trouble for telling her.

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If the patient is decision all the dr should have delt with her directly.

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My experience is that, more often than not, the patient knows, or has a pretty darn good idea of what's going on.

When it's not a cultural issue, I've often seen a daughter or son, who was mommy's or daddy's little prince or princess (and has not managed to become anyone else's prince or princess) who can't face what's manifestly happening.

Witholding information does indeed cheat the dying person of the opportunity to close their life out as they wish.

One case I had: A man came in directly from a hospital to the IPU where I worked. A couple family members were in complete denial, insisting on IV heart meds, fluids, etc, because the cardiologists were all wrong. We got him settled, cleaned up, and comfortable.

When his family came in, the patient turned to me--he'd known me for about 20 minutes--and asked if he told me his last wishes, would I see they were carried out. I told him I would do everything I could to make sure they were.

There was really nothing special about me. He just used me to get the message across to those family members who wouldn't face facts. That's desperation, eh? Even then, one of the deniers said "That's just his sense of humor."

Fortunately, other family members prevailed, he got to belatedly tell his loved ones what he wanted, and died peacefully three days later.

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