Patient battles with family, need advice

Long Term Care Columnist / Guide · Jul 8, 2004

Yes. Do you have a social worker or discharge planner? If so, you can involve them in this young woman's case, and they are the ones to find the resources for her to get the kind of care she wants and help her pay for it. A 25-year-old is an ADULT, and she should be making these decisions for herself......she is also old enough to fill out the paperwork for Medicaid and get on some form of public assistance if she is disabled and cannot support herself.

I agree, your patient is in an awful situation.........but there are options, you just have to look for them, and that's where the social worker/discharge planner/case manager comes in.

Hope this helps. :)

Farkinott, RN · Jul 8, 2004

I agree as well. This person is an adult and can/should make her own choices. It never pays to get too mixed up in the emotional baggage of a family. Of course if this person was being denied choices due to frailty or such like than a more proactive stance would be well warranted. It's a tough one by all means.

Destinystar · Jul 8, 2004

the fact that this adult is unemployed still lives at home with her parents tells me that she doesnt make the best decisions. a 25 year old has all the right in the world to her privacy when it comes to receiving medical care yet she chooses to involve her parents then cries "poor me". this pattern has been going on long before she ever became diagnosed with her illness. the last time i looked it was a patients right to refuse treatment so i cannot figure out what all the drama is about. this woman has been living with her parents for the past 25 years and i dont see it as the nurses responsibility to change anything at this point. if her illness is permanent she can apply for long term social security benefits, and put her name on public housing because she is low income and disabled and get out on her own if thats what she really wants to do. if people dont want to be cared for at home by their parents they can always go to ltc. there are also some grey areas here when a nurse decides to interfere with an md/patient relationship. the md based on their education and experience is often viewed from a legal standpoint as the expert on medical issues. sounds to me like this patient is in denial. review your stages of the grieving process. keep your boundaries as a professional and dont get emotionally involved in this md/pt/family triangle.

hi. i am an rn working in an outpatient facility. without going in to great detail for confidentiality purposes, i am currently caring for a 25 year old that has been diagnosed with a "disease" that is not easily diagnosed. anyhow, this patient does not believe the diagnosis or prognosis and is basically wishing to challenge the suggested treatment. she has done self study on the condition and seems pretty knowledgable.
the problem is her family. because she lives at home and depends upon her parents for financial support, they are basically demanding that she follow the advice of the doctor, regardless of her opinion and gut feeling. they also have very strong religious beliefs and are expecting her to follow certain rituals to survive. all of this she strongly opposes as she has strayed from the religion for several years. as she told me, her parents religion gave her very little comfort and she is not interested.
as i said, her parents are her financial support and she has no other options. she feels physically and mentally "worse" when confronted by her parents. i personally feel that the physician and her parents are forcing medical care and rituals on her that she does not want, but feels that she cannot object. i am at a loss here and not real certain how to advocate for her. i have provided her parents with whatever "alternative" treatment i could, within reason, i've also tried to explain to them that sometimes our "gut instincts" are crucial to survivalability. the best way to explain them is to simply say, they are "old world" when it comes to religion and there really does not seem to be a way out for this young lady. in addition, the physician is insistent that his treatment is the only option and has sided with the parents--i believe more out of pride than anything, but none the less, it's 2 against 1 and the biggest loser is this young lady. any ideas?

Katnip, RN · Jul 8, 2004

If the patient is competent, the patient has the right to refuse. Regardless of the MD's education and experience, the doctor does not have the right to try to force his/her treatments on a patient. That's coercion, and unethical and illegal.

It's the nurse's job to advocate for the patient. If the patient has done all the research, understands the consequences of her refusal, then the nurse should try to find a way to help the patient find alternatives, and try to find someone to help bridge that gap between the patient and her family and doctor.

I'd try to make sure the patient has legitimate sources of information about alternatives, if possible. If not make absolutely sure the patient hears clearly what the possible consequences of refusal are.

It isn't clear if the patient is doing this because she feels it's the right thing or if she's just being deliberately rebellious. Maybe he family has been so overbearing most of her life that she feels she has to have some say somewhere in managing her own life.

tootsyrn · Jul 11, 2004

The facility that I work in is an outpatient facility, so there are no discharge planners and definatley no social workers. There are a few casemanagers, but they are really limited on case loads of only those clients that are almost completely incapacitated. We also have a very short chain of command. One person above me and if a situation is not resolved, I have to take it to a county board that oversees the facility.

This particular patient has not always lived with her parents. She actually went to college, has a college degree, but when her condition hit, it hit her hard enough that she had few financial resources, was initially without health insurance and was not able to work. It's also on a very fine line between disabled or not. And we ALL know how the disability system works. She is not eligible for public assistance as long as she lives at home and would be eligible for very little assistance as a single person without children if she were to move out on her own. In this state, there is virtually no assistance available for a single person. It's unlikely that she can return to work until she shows some signs of improvement in her health.

Personally, I believe that if this patient had some advocacy and direction, rather than coercion, she would probably recover successfully. I think she is in a no win situation right now. I know we have to be cautious in "overstepping" those boundaries regarding physician recommendations, but on the flip side, if we believe something unethical is happening, we also have a responsibilty to respond.

I'm not sure how this situation will resolve itself. I will continue to supply this client with the information that I have available and hope that I am not her only advocate. Unfortunately for her, her condition does not have a huge pool of alternatives, but those that are available, are not only being ignored by the physician, but almost denounced.

She may be an adult, legally, but she does not have the knowledge of the medical system and certainly does not understand the legalities, ethical responsibility of practioners, etc. Haven't we all had patients that walk in to situations blind because one, single doctor tells them it's the "way".

Sometimes the only true "education" that they receive is from us, the nurses. Where do we draw the line?

mscsrjhm · Jul 11, 2004

The facility that I work in is an outpatient facility, so there are no discharge planners and definatley no social workers. There are a few casemanagers, but they are really limited on case loads of only those clients that are almost completely incapacitated. We also have a very short chain of command. One person above me and if a situation is not resolved, I have to take it to a county board that oversees the facility.
This particular patient has not always lived with her parents. She actually went to college, has a college degree, but when her condition hit, it hit her hard enough that she had few financial resources, was initially without health insurance and was not able to work. It's also on a very fine line between disabled or not. And we ALL know how the disability system works. She is not eligible for public assistance as long as she lives at home and would be eligible for very little assistance as a single person without children if she were to move out on her own. In this state, there is virtually no assistance available for a single person. It's unlikely that she can return to work until she shows some signs of improvement in her health.
Personally, I believe that if this patient had some advocacy and direction, rather than coercion, she would probably recover successfully. I think she is in a no win situation right now. I know we have to be cautious in "overstepping" those boundaries regarding physician recommendations, but on the flip side, if we believe something unethical is happening, we also have a responsibilty to respond.
I'm not sure how this situation will resolve itself. I will continue to supply this client with the information that I have available and hope that I am not her only advocate. Unfortunately for her, her condition does not have a huge pool of alternatives, but those that are available, are not only being ignored by the physician, but almost denounced.
She may be an adult, legally, but she does not have the knowledge of the medical system and certainly does not understand the legalities, ethical responsibility of practioners, etc. Haven't we all had patients that walk in to situations blind because one, single doctor tells them it's the "way".
Sometimes the only true "education" that they receive is from us, the nurses. Where do we draw the line?

This is not your business. She is educated, does not have any mental defect, and can make her own decisions.

It is very difficult watching people who are in bad situations, but we cannot save the world.

She has to find her own way.

If you have a problem with the physician, report him, quit, scream, etc...

Brickman · Jul 11, 2004

Anyhow, this patient does not believe the diagnosis or prognosis and is basically wishing to challenge the suggested treatment. She has done self study on the condition and seems pretty knowledgable.

I think this patient should find another doctor. If she has no faith in his diagnoses or treatment plan then what's the point in coming to see this doctor? Perhaps you could give her a list of docs that might be more receptive to her concerns.