The tragic patient

[OttawaRPN]

Patient is a 50 year old post MVA (about 2 years ago) with TBI (brain stem), hemiplegic, expressive aphasic, dysphagic, seizure disorder, PEG tube, incontinent, bedridden, physically aggressive (hitting/kicking unaffected side), grinds teeth and growls, only form of communication is to nod "yes" or shake head "no".

Has a abd binder to prevent him from pulling out PEG which he attempts++, 24/7 sitter to deter but often ineffective.

Rehab sent him to ALC and awaiting LTC WBA as not expected to improve.

Interdisciplinary notes say he is cognitively deficient however, appears to understand a lot more than previously presumed.

When asked if he's pulling out his PEG tube b/c he wants to die, nods "yes." Repeatedly. Question can be asked 5 different ways - always "yes."

Thoughts?

[ErinS, BSN, RN]

Does pt have a legal declaration of incompetency? If not, he can legal make his own decisions unless he has been declared incompetent by the MD, then he needs a guardian ad litem appointed (this is my basic understanding of this process). If family is involved there should be an assumed POA (again, this is just my understanding). If so, hospice and palliative care needs to be discussed. I am not sure it is ethical to stop the feeding on some one who is so uncomfortable. He likely is having pain, anxiety, and agitation based on behaviors, and may not want to die if he was more comfortable. This is a tough situation, and it sounds like the end of life discussion has been put off for too long.

[Davey Do]

Ottawa RPN:

As a nurses, we attempt to make our patients as comfortable as possible. The prioritity is to provide care.

It's difficult dealing with a situation such as this. But we must remain true to the guidelines, laws, and beliefs of our society.

As an Individual, I have made steps, through the legal channels, that neither Belinda or I will have any sort of life extending procedures performed on us. (If in asimilar state to your patient.) Our respective Living Wills are very specific.

Dave

[JenniferSews]

I'm guessing by your name you are in Canada? If so my experience is not likely to be applicable. In my state we would likely get the ethics committee involved. It may not end like we might hope, but that would be the first course of action. I cared for a similar patient, although he was completely unable to communicate or react to any stimuli. It is heartbreaking.

[Zookeeper3]

In the USA, we get a psyc consult to determine competency. If the patient passes his "yes" can be counted to declination of care. If not and there are multiple family issues the presiding state is petitioned to try to obtain a ward of the state. However if that happens, the best you can get is a DNR, you can never get a withdrawal from life support such as feeds from my state. Just some suggestions.

A tough ethical dilema, but you can instead focus on quality time while you are there and find ways to improve his life. Something and someone special like you will find a way to make him smile.... that is possibly what your goal can be.

[tralalaRN]

It's pretty common that people with neuro damage have better receptive than expressive skills. The fact that this patient has been observed consistently and apparently appropriately indicating needs/wants using yes/no is wonderful! AND, might I add, it is wonderful that you are being this patient's advocate! Clearly this patient has not been getting his/her needs met. FOLLOW THROUGH on this one. When I face an ethical issue like this one, I ask myself, what would I want done if it were me in this patient's situation?? If that patient has consistently indicated that he/she wants the PEG tube out - someone needs to listen and fight for that patient's wishes. Social workers should be involved, perhaps another psych eval, someone above mentioned POA, hospice etc. They all need to come together and discuss what is in his/her best interest.

Please keep us posted.

[GHGoonette, BSN, RN]

There is a thread in Central which deals with "euthanasia" and "assisted suicide"; you may find some good information and advice there.

Opinions on Euthanasia

If a psychiatric consultation reveals that this patient is sufficiently cognitive to be able to make decisions, there may be a case for him to obtain legal assistance in this matter.

[OttawaRPN]

Thanks, all. The patient had been declared legally incompetent and his POA wife is dead-set (pardon the pun) at any discussion regarding end of life. She is under the impression he can recover some normality from this injury, despite the team's insistence that prognosis is poor.

He's an otherwise healthy man, no other illnesses/comorbitities, and with intervention, can feasibly live a long time.

I'm not sure that pain/discomfort is the issue. He's on a myriad of meds - Oxy, Codeine, insane amts of Seroquel and even Halcion to manage pain/aggression and works daily with PT, OT and a behavioural therapist.

Someone asked: "What would I want done if it were me in this patient's situation??"

That's easy - I would never want to live like that and have threatened my husband/children that if they were ever to leave me that way, I would return to haunt them for all of eternity. LOL

But I'm not sure my answer to the question helps the dilemma any, as I am no angel of mercy.

[tralalaRN]

There of course, is a difference between passive and active euthanasia. This is a case similar to the Terry Schaivo case - removal of a feeding tube, which is considered "passive" euthansia, and is most certainly legal. Adults have the right to refuse treatment, and this feeding tube would be considered treatment. The issue here, is the man's ability to make that decision (unlike Terry Schaivo who was not competent). Can it be effectively proven that he is now competent to make decisions for himself?

If his wife is his POA, and is making decisions for him, it most likely would take some effort to get her to change her mind, or have her removed as POA. A new psych eval might help, but unlikely that a court would remove her. Sadly, without some help from other family members, this poor guy will most likely not be able to have his wishes met.

[GHGoonette, BSN, RN]

Ottowa honey, I'm going to share this with you. I copied and pasted it from the thread I mentioned.

This was my last post on the subject.

"An experience that I had back in the 70's-my second foray into nursing-was so horrendous that this is the first time I have ever spoken about, commented on, or even alluded to it.

I was still very young and was a junior nurse in a med/surg ward. A gentleman was admitted for a colostomy; he had ca rectum, which had already spread throughout his abdomen.

Instead of discharging him to live out his last days with his family, they proceeded with further surgery.

They removed his colon. Then they removed his small intestine. They continued with his bladder... and on, and on, until this man was an emaciated wreck of what had once been a human being with nothing but a gaping hole where his abdomen had been. His "wound", if you can call it that, stretched from sternum to pubis.

If only someone had had the courage to give him a fatal dose of morphine-but no, he suffered until God finally took him away from the idiot doctors who committed what I can only call criminal assault on him."

I believe that unless medicine has some "miracle cures" that none of us are aware of, this patient should be allowed to depart this life on his own terms, with at least some vestige of dignity.

Just my

[diane227, LPN, RN]

Competency is determined in a court of law but usually a psychiatric evaluation is required. Does this patient have a power of attorney? Had he had a recent, complete neuro evaluation? I would speak to the physicians, the manager and your social worker about this issue. Please be sure to document this patients needs and communications to you in your notes. This patient might be ready to refuse further care, which I would think he would have the right to do.