Can I refuse treatment for my mother, who is a hospice patient?

Follow
Share

My mother has had alzheimer's for a while now. She is considered end-stage and in a hospice program. She has developed a vaginal discharge. It apparently doesn't bother her. She is basically non-verbal but can communicate through actions if she is having pain, etc. She is not scratching or anything relating to the discharge. The nursing staff/doctor/hospice did a culture of the discharge and it came back negative for infection. They treated her with an anti-yeast medication with no results. HERE IS MY DILEMA: Her living will states no operations, and no antibiotics. As a nurse and her POA I will allow the antibiotic but absolutely refuse to budge in the operation department. She discussed this with me long before the alzheimers diagnosis and I aim to follow her wished. They want to send her to a gynecologist for a pap smear and exam. What are your fellings. If she goes to the gyn, what can he find or do that her medical doctor can't, except find cancer which I will not have treated. She I put her through the trama of the gyn exam only to make the staff feel better. What I don't understand is that the hospice nurse agrees that she should be seen...please respond Thank

This question has been closed for answers. Ask a New Question.
Find Care & Housing
22

Answers

Show:
Personally, I agree with you. Why put her through the tests if she is in end stage dementia and she can't have surgery even if they find something wrong. If she is not bothered by the discharge, I'm surprised that a hospice doctor is advising this exam. I believe as her POA, you can refuse treatment. You may want a second medical opinion if that helps you feel better about the decision.
Take care,
Carol
Helpful Answer (0)
Report

As a hospice nurse for 13 years, I am 100% in agreement with you, If monostat or other yeast med doesn't help, then too bad for the staff. I assume it is the smell or concerns about skin breakdown that would make them feel this was so urgent, but there is absolutely no way I would subject her to a gyn exam or further diagnostics. Shame on that hospice nurse. Stand your ground. This is about comfort and dignity, not treatment.
Helpful Answer (8)
Report

You are her health advocate and what you say...goes. Stand your ground and feel good about it!
Helpful Answer (6)
Report

I'm so surprised! I'm on my third event with hospice people, and around here they advise comfort measures only. Nothing else, including antibiotics unless the person insists. Stand your ground, like everyone else here said.
Helpful Answer (5)
Report

Something isn't right here. Hospice is about palliative care and not curing so antibiotics should not even be considered. What type of "nurse" is this, RN...LVN...nursing aide....just what level of education, certification and skill?

Is it the case that your mom is in a facility like a NH and also on a hospice group?
If so, then there are 2 different medical directors involved - the MD who is the medical director of the NH (this person should be listed on the masthead when you enter the NH and listed on all information printed/web & in documents with the state) and the medical director of the hospice (this should be a whole other MD.). At my mom's NH, there are 3 different hospice groups (Vitas, Odessey and another I can't remember) that provide hospice services & all have a different medical director. If you are doing at home hospice, then you probably are just dealing with 1 MD who is the medical director.

Personally I'd stop dealing with the nurse and I'd do a short, pointed letter and fax it over to the medical director of the hospice and the medical director of the NH. In it I'd state my concern as DPOA, MPOA and immediate family member that nursing staff is pressuring family to start procedures or seek new physicians for what may be considered "non-pallative" care for your mother who is a hospice patient. Keep the fax short and maybe 2 paragraphs. You can also send this via return registered mail but that could take a week++ for delivery and return of the signed off card. At this stage, you don't want that time lag.

My first thought is that this "nurse" is making decisions outside of her purview.

Remember once they go on hospice, the rules are pretty strict on seeing doctors. She pretty well has to be seen by the MD’s affiliated with hospice. If she goes to see her old MD or you take her to the ER or do anything that promotes "curing" her, she can be discharged from hospice. Medicare can decline to pay for that doctor visit(s), hospital or ER cost. Everything medical has to go thru the hospice approved protocol. This can be hard for family to go along with but that is what the hospice system is about. You may be in the odd situation that the nursing staff just doesn't truly get what hospice is about and should not be working in hospice.

I have had nursing issues at my mom's care plan meeting. These are the required meetings every 3 mos. At one last year at my mom's old NH, there was a new "nurse" - not an RN or LVN but an aide - who piped up when we were reviewing the care plan about my mom being a "no-code", saying how can you do that, how amazing fit my mom is, you'd be letting her die...yada, yada. I firmly stated that was her wishes and showed her the DNR she did back in 2002. Then she started on it again, at that point, I told the social worker to have the DON (Director of Nursing) come to the meeting asap. The DON is pretty much god at most NH as they run it (most NH are on this system and the medical director comes by once a week). When she showed up, I told her that my mom's advance directives were clearly in place and that I did NOT expect any deviation or commentary from that decision. You could tell she was major Po'd with the aide and having to come to the meeting. I did a follow up fax to the administrator of NH regarding the care plan meeting too. The aide got canned the following month. imho some people just should not be working in this type of facility when they cannot get past their personal mind set or religious beliefs that interfere with providing care.

You know the situation best and you have to be the advocate for your mom. Stick to your guns. Be firm and follow up. Good luck.
Helpful Answer (5)
Report

Absolutely no exam. Stand your ground.
Helpful Answer (4)
Report

I totally agree. Stand your ground on this - no gyn exam. Unfortunately I had hospice staff problems when my mom was in a hospice facility - nothing like this - my issues were directed on instructions given to them and not followed, they not informing me of things, not being compassionate, and the top of the list one - letting her assisted living staff know she passed BEFORE I (only family member) was contacted! I found out when I walked into her assisted living facility by their staff! (that was a shocker!) I know that Hospice staff can be wonderful - heard that from many others and I'm glad they had no problems - there's good and bad in every situation - but don't ever feel that "just because they're Hospice" they are the experts or the final word on things. Go with YOUR gut feeling and what YOU feel is right!! Good luck & God Bless!
Helpful Answer (4)
Report

Also, a gyn exam on a person with dementia would be very traumatic and invasive. My mother would think she was being raped if she had to go through that!
Helpful Answer (4)
Report

I just wanted to let you and others know, that if for whatever reason you are not happy with a certain hospice organization, you are allowed to change to another hospice one time. We have personally done this.
Helpful Answer (3)
Report

Hospice means just that, comfort care only. I just finished 5 of a 6 month time frame, for my precious sister. She had ‎Alzheimer's and entered hospice in August at the end stages of the dreadful disease, when she could barely walk. By Christmas she could barely move, although she did still know me, and ate a tiny amount of food and liquid. On Jan. 7, 2012 she could no longer move or speak even though her lips moved slightly, as if she wanted to say words, no sound came out.

She entered the final week of her life, almost motionless. The last three days she was given comfort care, even though her only sign of discomfort was in the quality of her breathing. We never entertained any thought of antibiotics, or any other intervention.

Hospice was there for advise, help and evaluation, through all of the final 5 months, and I am so thankful I never had to worry about 911 being called, and some horrible form of intervention occurring. We made sure she never suffered bed sores, or any other problems due to being in bed 24/7. It was time for her to leave me, the pain is unbearable, but I could not wish for her to continue the torment, of what was happening to my wonderfully priceless Eileen. January 16, 1955 until January 15, 2012, RIP.
Helpful Answer (2)
Report

See All Answers
This question has been closed for answers. Ask a New Question.