The right to an opinion

[ElectricCabbage]

I have been working as an RN for 6 months now. Enough time to rub the innocence and naivety off of anyone I think. My position is in a long term care, and seems to be equal helpings of caring for the geriatric population and providing support for families with loved ones in our home.

In the last half a year, I have walked with 25 people as they complete life's final transition- dying. I have talked to dozens of families about what to expect at end of life, what's normal, and what are uncomfortable symptoms that we can control with medication and other interventions.

Every family that I have worked with as we support their loved one is different. All are dealing with something new- losing their loved one- and most are experiencing very acute grief. Most families are excellent, and are in agreement with our general philosophy of care, to promote comfort at end of life. But some aren't. And that is really the crux of this post.

Some families don't want pain medication, because they want their loved one to be alert. Some families want to keep feeding their loved one, even though they are not alert enough to protect their airways. Some families want their loved one up in the chair all day, despite excruciating pain.

It is about these families that I hear my coworkers say "I would never treat my father/mother/friend that way" or "they are just totally out of touch".

And it is about these families that perhaps I still wear my rose-coloured-new-nurse-glasses. Because I truly don't see myself as having a right to have an opinion, outside of my professional explanations and recommendations for care. I don't see that I have the right to harshly compare what my decisions for my loved ones would be against the decisions made by others. And to be honest, I don't see how my personal opinions are relevant at all to the care that I provide.

Truthfully, I see my role as both complex and simple: to provide concise and easy to understand information, to provide support, to present options, and to execute the decisions that families make based on the options that are presented. In my line of work, I don't claim the right to have any opinion outside of my professional assessment of a situation.

How about you?

[LadysSolo]

The problem I encountered when I was a floor nurse was that DESPITE a patient's signed Living Will, when the patient became unresponsive and the MPOA disagreed and "wanted everything done" (Living Will stated DNRCC), the provider inevitably would go with the MPOA "because the patient can't sue me after they have died and the family can." Some providers need a spinal transplant.

[Here.I.Stand, BSN, RN]

The law explicitly states that the decision maker may NOT be the treating providers.

True, but once the decision has been made to transition to comfort care, and applicable orders are entered? I guess I don't ask for the family's permission to give prns; I share my assessment and say that I am going to get them a dose of morphine now. And then I give it. And I would never feed that pt anything that distresses the pt, simply because the family wants her fed.

Now I'm not going to be a ***** about it; I would gently state that I understand that food is associated with comfort... but in her case, feeding her could very well make her feel like she's being waterboarded. She also probably doesn't feel hungry -- actively dying people don't tend to. And then I might suggest dipping oral care sponges in her favorite liquids to see if she seems to enjoy tasting them.

(On the other hand, if the pt is asking for the food -- again, totally different than the case where the pt is dysphagic and expressing no desire for food. For the dying hungry pt, I would do everything I could to make that happen.)

We do still get to use our nursing judgment and deliver our planned nursing care, even when a decision maker is present.

[Anonymous865]

Am I understanding you correctly? Are you saying that a patient's right to decide their own fate only applies when they are conscious and able to express their wishes but the moment they lose that ability, a family member/relative (healthcare proxy) can overrule the patient's clearly stated wish and force healthcare professionals to do the exact opposite of what the patient wanted? That would mean that patient autonomy is nonexistent at the end of life. It would also mean that healthcare professionals are obligated to knowingly act contrary to the patient's wishes and actively cause harm. Both those scenarios are horrible beyond what words can express. A healthcare proxy should in my opinion be required to advocate according to what the patient wished for themselves. The proxy should be protecting the rights of the patient, not inject their own values and emotions into the mix.

The design seems flawed. What's even the point of having a form that the patient can fill out and express their wishes regarding their end of life care, if it's rendered null and void the minute they become unresponsive.

Yes. That can and does happen.

Unfortunately it is not just the family that disregards the patient's decisions. Healthcare providers are just as guilty of it.

Unfortunately it is not just at end of life. It happens when someone is injured or when they have dementia.

Adults can and often do create an Advanced Directive which details their wishes should they become unable to speak for themselves. The problem is that the Advanced Directive can not detail every possible scenario about what the person wishes to happen in that scenario. It usually provides general guidelines.

When someone creates an Advanced Directive their lawyer will advise them to to name a Medical Power of Attorney. That person is supposed to interpret these guidelines based on their knowledge of the patient's expressed wishes and the patient's values.

Another problem with Advanced Directives is that often the patient does not understand the implications of what they are choosing. For example, one case that was published was a man in a skilled nursing facility. Based on his Advanced Directive the SNF made him a DNR. He developed a GI bleed and was transferred to a hospital. When he was admitted to the hospital, he insisted to the physicians that he was NOT a DNR. He insisted that he wanted everything possible done for him including resuscitation.

Another problem is how the Advanced Directive is interpreted. A patient can indicate that if they have "no chance of recovery" that they do not want X done. To a medical person a patient who had a 95% chance of dying would have "no chance of recovery," but to the patient "no chance of recovery" might mean 0%. The patient might want to be treated even if their chance of recovery is only 5%.

Another problem is that people often change their mind over time. One study asked people if they wanted mechanical ventilation. They interviewed the same people 3 years later. Of the people who had indicated that they did NOT want mechanical ventilation 10% had changed their mind. It rarely occurs to somone to go to the lawyer and change their Advanced Directive when they change their mind.

Another study showed that nearly 60% of people with an Advanced Directive involved a family member(s) in deciding what to put in the Advanced Directive. The study authors pointed out that if someone wants a family member(s) to advise them on what to put in the Advanced Directive, they might also want that person(s) to interpret the intent of the Advanced Directive.

Bioethicists point out that respecting a patient's autonomy means not only respecting what decision a patient makes but also how a patient wishes to make that decision even if the decision is to allow their family's wishes to supercede their own.

[learner1108]

The family members are the ones who will live with their end-of-life decisions they made for their loved ones who were not able to make those decisions themselves. They will remember the rest of their lives what they decided and they will question themselves many times if they should have done something differently. Their decisions are theirs to make and live with. If they made the decision out of knowing their loved one's desires and they followed those desires, they will be grieving, but at peace. If they made the decision out of being pushed to the decision by someone else, they may not be at such peace.

The decisions to feed/not feed, extend life/not extend life when it is or is not painful is owned by the surviving loved ones. No other person knows before hand what they would do intil they are in the situation. I've been there.

Advise the relatives, comfort the relatives, grieve with the relatives, but the final decision is theirs. I think you are doing a wonderful job for people in distress. A nurse like you helped my siblings and me make a difficult decision at that time in our lives. I hope there is a nurse like you to comfort, advise, and grieve with my children if they ever have to make that decision (end-of-life care for a legally incompetent or unaware loved one) about me.

[judithkaren]

A family member that insists their dying loved one be denied pain medicine for the reason of wanting them to be alert? That is the most selfish thing I have ever heRd of. If you want to be sure they remember you, do things with and for them while they are well, not out of guilt while they are dying. Real love is thinking of the dying person not yourself

[Here.I.Stand, BSN, RN]

Nevermind -- answered

[Susie2310]

From my own experience, it can be very difficult for family members to fully appreciate how ill their loved ones are, and to understand that some activities are now unsuitable for them (i.e. sitting up, and eating, which their loved one may have been able to do without pain or without inability to protect their airway only the day before). The patient's deterioration can happen very rapidly, before family members are able to process the changes and understand how best to take care of their loved one. This is different from denial of a loved one's impending death. These situations are often overwhelming for family members, and they need continual access to hospice nurses in the form of in person support and telephone support in order to provide the best care they can for their loved one and to minimize their loved one's suffering.

[AngelKissed857, BSN, RN]

The best part of this thread for me is seeing the passion and dedication so many have to their patients,, thank you for sharing.

[BeenThere2012, ASN, RN]

The family members are the ones who will live with their end-of-life decisions they made for their loved ones who were not able to make those decisions themselves. They will remember the rest of their lives what they decided and they will question themselves many times if they should have done something differently. Their decisions are theirs to make and live with. If they made the decision out of knowing their loved one's desires and they followed those desires, they will be grieving, but at peace. If they made the decision out of being pushed to the decision by someone else, they may not be at such peace.

The decisions to feed/not feed, extend life/not extend life when it is or is not painful is owned by the surviving loved ones. No other person knows before hand what they would do intil they are in the situation. I've been there.

Advise the relatives, comfort the relatives, grieve with the relatives, but the final decision is theirs. I think you are doing a wonderful job for people in distress. A nurse like you helped my siblings and me make a difficult decision at that time in our lives. I hope there is a nurse like you to comfort, advise, and grieve with my children if they ever have to make that decision (end-of-life care for a legally incompetent or unaware loved one) about me.

I hope you don't take my response as a criticism...Just giving another point of view. I'm sure you made good decisions for your loved one.

Agree with your point on how the family members are the ones who live with the decisions...However, over the years, I have rarely known a family to NOT question their decisions no matter how it all went. Even when someone dies without many choices about how to treat VS not, families still wonder if they did the best they could for the loved one...It is the families burden, one of the hard part's when loosing someone. I still feel the patient comes first...Meaning, our responsibility is to do what is best for the patient and then support the family through the process as best as we can. I have been told by the mother of one of my patients that she was grateful I explained certain things and how I explained them as it helped her understand the reasons behind the recommended treatment that she initially was against. It helped her make a decision she was glad she ultimately made. Can't get much better than that.

[LadysSolo]

I absolutely NEVER questioned whether we did the "right thing" for my mother, as we followed what she expressed her wishes to happen. My mother died of Alzheimer's disease, and she had many years before expressed that she wanted to be a DNRCCA, and that is what we did. She NEVER wanted a feeding tube, and we honored that. She had "no heroics," and died peacefully. No regrets, and I have told my son the same thing - NO HEROICS, and NO GUILT - it is what I want to happen.

[BeenThere2012, ASN, RN]

I absolutely NEVER questioned whether we did the "right thing" for my mother, as we followed what she expressed her wishes to happen. My mother died of Alzheimer's disease, and she had many years before expressed that she wanted to be a DNRCCA, and that is what we did. She NEVER wanted a feeding tube, and we honored that. She had "no heroics," and died peacefully. No regrets, and I have told my son the same thing - NO HEROICS, and NO GUILT - it is what I want to happen.

So sorry you went through that. My Mother-in-law died of the same. It is a horrible disease and so hard on the family for many reasons.