honoring patient decisions

Stargazer · Apr 12, 2001

Wow--wouldn't this be defined, legally, as assault? Sounds actionable to me. I'd be interested in other opinions as well.

minurse · Apr 13, 2001

Not long ago, an elderly man self extubated. He was alert and with sats in the low 90's to high 80's. He'd been asking for days to take the tube out. Well, the intensivist walked in and said, "We'll have to put the tube back in." the patient very loudly said, "NO". We all looked around at the family and docs. The intensivist said, "He's hypoxic. We're reintubing." and proceeded to do so. It was weeks later when the patient finally died--intubated.

Sunshine55 · Apr 13, 2001

Canoehead - Paralysis does not equal inability to make an informed decision. Wife and Doctors were totally in the wrong.

I had 2 patients with Multiple Sclerosis in very debilitated conditions. Neither, was able to consciously move anything but their eyes. The first resident was able to speak in a barely perceptible whisper and informed me she no longer wanted to receive her tube feedings. This information was related to the appropriate personnel and after a consult between the resident, Doctors, Psych, and her parents (who visited daily) it was decided to honor her wishes. Her G-tube was removed and she was allowed to die with dignity. The second resident appeared to be in constant pain, had continuous liquid stools, moaned whenever she was positioned and cleaned up, tears were often seen rolling down her cheeks, received only PRN pain medication (depended which Nurses were on duty as to whether she received any), had frequent UTI's, septicemia, and numerous bouts with Pneumonia. Her family wanted everything done to keep her alive at all cost. This resident was unable to speak for herself and continued to live an agonizing life.

**canoehead, BSN, RN** · Apr 13, 2001

If I was suddenly a quad I would absolutely want to be left alone, comfortable, and without tubes/surgeries. It seems like depending on the doc, and the family you may or may not have your wishes honored. I have actually signed a DNR paper, not because I absolutely want DNR,(I'm 30) but because I don't want there to be any doubt as to what my wishes are in a situation where I am unable to speak for my self. I would rather die than become a burden, or live on without the ability to make my own decisions.

MollyJ · Apr 14, 2001

Based on the limited info given, I am "for" what the wife and surgeon did. Not having spine stabilization surgery will not allow or cause the man to die, it will just make his care much more difficult. If I was a wife in this stage, we would proceed with the surgery and then make our choices afterwards.

Canoe, I have often thought that I would rather die than have spinal injury and I do understand where you are coming from but the choice here is not Die OR Spinal surgery. The truth is that Spinal injury is an immutable fact here. The realities are maximizing ease of care and function VS making them very difficult. A realistic scenario is that he could survive but simply have worsened function without spinal stabilization surgery.

Also, it is hard to say that spinal injury doesn't include head injury and many spinal injuries involve being under the influence of some chemical and both of these place a doubt on the competency of the man to make a decision PLUS the stressor of injury.

Of course, what you and I both worry about is getting caught on the medical intervention treadmill, where if we can do it, we do do it. I formerly worked with tech dependent kids and that's where all of those families were in one sense or another. What prevents you from getting caught on this treadmill is great communication with your surrogate decision makers (spouse, parents, etc) about what technology and when.

For example, please DO defibrillate me for VT in the setting of acute MI in the ED. Please do not defib me for VT if I have mets and have a feeding tube even if my kid is still 9. My husband and I have conversations like this all of the time. I could honor the decision of my partner, post spinal injury, to not treat the next UTI or respiratory infection if I thought it was not a decision born of depression, shock, being under the influence or head injury. For my husband and I, lost of cognition is loss of the person and if my husband lost cognition due to head injury, stroke or degenerative disease I KNOW his wishes clearly and would feel empowered to make very difficult decisions because we have talked about it so much. I could say I was representing his interests.

I love ethical decision making discussions. Thanks for the good post.

res04lly · May 3, 2001

Man what a topic, the wife should have respected her husband's wishes. I was always under the belief your patient makes the final call.I know alot of doctor's out there get frustrated when this happens but it is usually the patient's call isn't it? I had this happen but my husband stood his ground and refused to be intimated by the doctors. I was hemorraging after my daughter was born, He knows how i feel about blood transfusions for me. It is my personal thing,that i don't want them. the doctors backed him in a corner and told him if i died he would have to live with my death when he could let them give me blood and how was he going to take care of an infant ect, called social worker ect trying to get them involved. They also stated that due to blood loss i was not capable of the decision. Well i am here today because he held his ground and upheld how i felt. I think this is where we as nurse's need to be more aware of patient advocacy and be a support to both patient and family when we need to be. I feel sorry for this man because not even his wife was listening to what he wanted,How sad to know that her wishes over rode his and the doctor's did what they thought was best unstead of listening to him.

ecb · May 16, 2001

ok, I will do you one.

I am an executor of my Fathers Living will. This document clearly states he never wishes to have a tube placed in his body for the purpose of feeding or hydration. He never wants CPR or Ventilation done on him.

This documnet is 8 years old.

1 year ago he developed ALS.

My mother is the primary executor, I am the secondary. She is normally the one who helps people deal with their own deaths when their families abandon them, or just cannot deal. She is a ROCK! (as long as she has my father to be there for her) but this time it is HIM

I have asked my father if any of his wishes have changed, and he has told me (with some anger :mad: ) that NOTHING in his advanced directive has been or will change.

I am not looking to see it changed, i just want to know. I am scared, and I want to do what is right for him, and I will even go against my own beliefs to give him what he says he wants.

but I am scared.

and when faced with his anger, and my mothers anxiety, I am even more scared.

as nuses, what would you do?

Now, as ME what would you do?

now....

:confused:

[ May 15, 2001: Message edited by: ecb ]

Stargazer · May 16, 2001

ecb, I guess I'm not clear on what the dilemma is here. I assume when you say you and your mother are executors of your father's living will, that you have medical durable power of attorney? Does your mother appear unwilling to carry out your father's wishes? Or his caregivers? Are you doubting your own ability to carry them out?

It appears that so far you have done all the right things. You were aware that he had very specific advance directives, but because they had been drafted so long ago, you clarified his wishes with him to make sure they had not changed. Now you and your mother are both aware of his specific wishes. Under the circumstances, I would just want to be sure that his primary physician and all caregivers were aware of these directives also, and plan to carry them out. You don't want to be arguing with the primary physician in an emergency, or finding out that he had your dad intubated in the middle of the night because he has religious objections or something to DNR orders. Make sure that there are copies of his living will and DNR orders available at the front of his chart if he is hospitalized. My understanding is that in some states, paramedics may not be legally allowed to honor preexisting DNR orders and need to receive specific instructions from the ER/admitting doc. You should check out the legalities of this in your state.

I understand your fear. This is something I will probably have to face with my own parents too. I know when the time comes, I will be reluctant to let go, but after 7 years of working in ICU and seeing so many pts inappropriately tortured against their wishes because family members were unable to deal with their grief, I have very strong beliefs about respecting the patient's wishes no matter what. I am counting on the strength of those beliefs to give me the courage I need to resist the temptation to "do everything possible" even when it is my own parent. Hang in there. We'll be thinking of you.

**canoehead, BSN, RN** · May 17, 2001

ecb, I would definitely continue to honor your fathers living will, as it has been his opinion for 8+ years, and even in the face of losing voluntary movement he vehemently reasserts his wishes. If your mother has second thoughts, she needs to feel secure that she is not the person that needs to make the decision, your Dad has already taken steps to make it, and to protect her from the responsibility.

If it was my Dad, and we went against his expressed wishes my mother would respond to the thought that he has put his trust in her, and in her strength to see him through illness, and even death in the way that would be easiest for HIM. After all that is the only thing we can do for a loved one at this point, make it as easy and as comfortable as possible for them.

My thoughts are with you.

Janet Barclay · May 17, 2001

Dear ecb,

First I am so sorry for the pain that you and your family are going through; I lost my mom to cancer a few years ago and watching a loved one suffer is so difficult.

As a child, you have to respect your father's wishes, even if they are painful to you; as a nurse you have to do the same.

There is a patient in my ICU who is dying of ALS by inches because of his family's inability to accept and his inability to communicate his wishes to us.

Your Dad is angry because he has a terminal illness, your Mom is shattered because she is facing losing her partner.

Your Dad has clearly expressed his wishes for end of life decisions, hard as they may be to accept. Following his wishes is the best way to express your love and respect for him. Hang in there.

Janet

km rn · May 17, 2001

My experience has been that living wills and patients wishes are ignored unless the patient's family will advocate for the patient. I have seen physicians pressure families to try this one more thing that may make a difference, etc.

I have also seen 1 son who hasn't seen his dad in 20 years, refuse to make the dad "comfort care - only" - even though all of the other siblings state their dad would say enough is enough.

I've become very disillusioned with the whole living will, patients right to self-determination, etc.

ECB - you have the right to be scared - your father has a terminal disease. Thankfully, your father has made his wishes known 8 years ago and now again. Is there an ALS support group that can provide you with support and give you comfort as you follow his wishes?

What about Hospice - usually they can support the whole family and promote comfort and dignity during the dying process.

What about clergy support? Most religions have recognized that a terminal prognosis negates the use of artificial life support via tubes.

Re: what should you do?.....a) find someone to give you support; b) continue to advocate for your dad ....he has made his wishes clean, c) Try to recognize that your dad's anger is normal and hopefully he will work through it soon. d) Be kind to yourself - you are a daughter first and a nurse second. It is okay for you to be scared, angry, frustrated, overwhelmed, etc.

Hang in there.......