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?

[heron, ASN, RN]

But what if family dysfunction intervenes? Not every family is healthy enough to cope effectively with emotional issues like end of life decision. Two true stories from my years in hospice:

I was caring on my IPU for an elderly lady whose POA was her adult daughter. One night, DD was spending the night while I worked with the patient whose dementia and possible terminal agitation had made her restless and anxious. I spent a fair bit of energy explaining to DD why I couldn't just make her mother lay down and go to sleep.

I finally got her a little bit settled and was going about other business when I heard a commotion from the room: angry yelling, crying, banging doors. I found DD holding her mother down on the bathroom floor while she tried to forcibly remove her mother's clothes. DD told me she was making her mother take a shower and change her clothes.

Another time, we admitted an elderly grandpa who was admitted to IPU for intactable diarrhea and wound care of the resulting extensive perineal skin breakdown. It turned out that the pt's spouse and sister-in-law, who were his primary caregivers at home, decided that if one dulcolax suppository was good, two must be better. They gave him two at a time daily - sometimes more often - regardless of results. They also insisted that morphine was killing him, not his cancer, so they refused to medicate or allow us to medicate his pain. The situation was complicated by the fact that the patient admitted to pain and asked for relief when alone with staff, but denied pain when family was present.

One night, I answered a call light to find the patient's grand-daughter in bed with him. She informed me that the man had soiled himself, that she had cleaned it up but that his dressing needed to be changed - an exquisitely painful process for him. She insisted that I do it while she stayed in bed with him and without pain control of any kind.

Pretty skeevy, huh? Both situations looked

more like revenge to me than any rational process of informed and caring decision-making by a healthy family.

For the record, I agree with everything that's been said about respecting families' wishes, even when we would have made a different decision for our own loved ones or ourselves.

I also agree that many, if not most, nurses have an oversimplified idea of the grieving process and what constitutes a "good death". We prattle on about families being in denial as if that wasn't a normal and necessary part of the process. We get offended when they don't default immediately to acceptance and let us run the show already.

But, on the other hand, dysfunctional grieving is a real and serious complication, with potentially lethal long term effects.

Dysfunctional and abusive families are common in our culture and those dynamics inevitably play out during end of life care in some intense and occasionally bizarre ways.

Not only do we have a "right to an opinion", we have an obligation to understand the family dynamics at work in order to minimize the suffering of the person doing the dying in the middle of it all.

[Tenebrae, BSN, RN]

I always take it back to the patient with "what would X want in this situation"

As for not medicating, I had one situation where the NOK/EPOA didnt want us to give their parent anything such as midazolam/clonaz but were happy with morphine. Fortunately we were able to manage this patients pain and they didnt have alot of agitation as long as the pain was under control.

I dont do a painful dressing change without adequate pain relief. If it becomes too much for the patient I've been known stop and administer more. I always document what I have given, why and the effect. if the family dont like that they know where to find my line manager.

As for feeding someone, I take the approach if the patient is able to and taking food and fluids, more power to them. But if they are unconscious or resisting I do not push the issue.

my 2 cents worth.

[EaglesWings21, ASN, RN]

EBP for hospice states that medical staff need to work with the families. If I have an actively dying patient I would not allow them to sit in the chair if it were painful or labor some to them. But if the family is against morphine I won't push it unless the family agrees that is what is best for the patient.

My grandfather recently died in the hospital, and my grandmother was against taking off the O2 and giving him morphine, so they didn't. He held her hand up until he passed and was surrounded by family. I 100% disagreed with that method but she was his POA and wife of 50+ years so I respected her decisions.

[Kooky Korky, BSN, RN]

I don't see advocating for your patient as being an opinion.

I think it's her/his professional opinion. And he/she is first the person, then the nurse. So personnurse gets to have, has to have an opinion and do what's best for the patient.

Years ago, pts were kept up in the chair for hours and hours, they begged to be able to lie down and stretch out and take a nap, but they were forced to stay up in those damned wheelchairs. I will never allow that to happen again to any pt. If they are in pain and want to lie down, they're going to be put on their bed. Period.

OP - don't allow a family member to have unrealistic expectations. Be kind but resolute. Point out the patient's expressions of pain and mitigate them. You are a pro now. You must act like one. I know you are "in process". We all are. But you need to seriously advocate for your patients, not just try to keep their families happy.

[Kooky Korky, BSN, RN]

I agree wholeheartedly with Here.I.Stand.

If I see a person being physically assaulted in the street I won't ignore it and simply keep on walking,

Are you armed? Know MMA? Just curious. It's nice that you care and don't mind getting involved.

[jadelpn, LPN, EMT-B]

Family dynamics is something that can be hard for nurses to navigate.

The newer end of life forms that are very direct in the wishes of the patient are a godsend in my opinion. But can't trump a HCP once the patient is unresponsive.

The only thing you can do it to continue to advocate for the patient, with the assistance of the practitioner.

There are families that just don't "believe" in the concept of palliative care. Denial is a huge part of the grieving process. The thought process of "not feeding someone" can be difficult to explain. As well as the patient being "out of it".

Use your resources and have hospice/palliative care in on the case. Their experience can sometimes assist. As well as a nurse who has not been actively invested in the care of the loved one for the past 20 years--a neutral party.

Finally, we do not know the communication that the patient had with family regarding dying. There are just as many patients who are also in denial, and want to be put in chair and fed--as then they are "living" and "have a high tolerance for pain". There are just as many who do not want to be medicated. As non-medicated means to some "still in control". The key is to find the balance. And hospice care can provide that balance.

[macawake, MSN]

The newer end of life forms that are very direct in the wishes of the patient are a godsend in my opinion. But can't trump a HCP once the patient is unresponsive.

The only thing you can do it to continue to advocate for the patient, with the assistance of the practitioner.

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?

Are you armed? Know MMA? Just curious. It's nice that you care and don't mind getting involved.

Kooky korky, I'm seldom armed when I'm "out and about". Only at the range and competitions. I am a long-time student of jujutsu and krav maga. Fortunately people being assaulted in the streets is a rare occurrence but if it does happen, I can't ignore it. I'm not particularly brave as I'm never actually scared in the moment. It's second nature, pretty much a reflex. The emotional reaction comes afterwards when I have time to reflect.

Anyway, the only reason I mentioned the street assault scenario in the first place is the similarities that I see, i.e. someone being helpless and in need of support/advocacy. A dying person is in a supremely vulnerable situation. We as nurses need to use all our resources, skills and knowledge to try to protect our patient and ensure that s/he gets to die on his or her own terms.

[AutumnApple]

A couple things that I feel need said:

1. We talk a lot about the right to 'have an opinion'. If you listen (read) closely though, you will find that what people are actually talking about is 'acting on their opinion'.

These are very different things.

As professionals, our duty, our responsibility, is to manage our actions and know it is the patients opinion that drives decision making, not ours.

Our habit of mixing up 'having an opinion' with acting on it has lead to the birth of a large community of individuals (nurses and non nurse alike) who carry on with the false belief that we, as professionals, must have no opinion.

This leads to my second point.

2. Humans do not possess the capacity to decide to have an opinion or not. We as nurses are humans.

If you are alert and oriented, you are going to form an opinion on everything and anything you are a part of or witness. You have no choice in this matter.

What you do have a choice in is whether you let said opinion change your actions and decision making. Having an opinion does not by default imply you should voice that opinion or act upon it.

Again: As professionals, our duty, our responsibility, is to manage our actions and know it is the patients opinion that drives decision making, not ours.

The point: It is a bit foolish to debate whether or not nurses have 'a right to an opinion'. Regardless of where that debate takes us, they are going to have them. There is no magical switch to turn them off.

What is worth discussion and debate is: Are we doing the right thing in spite of our opinion? When is it appropriate to voice our opinion? What skills can we learn to better help the patient when our personal opinion does not agree with theirs?

I just find the whole phrase 'the right to an opinion' misleading. It implies we have a choice in the matter.

The danger to believing you have a choice is: If you believe you are expected to flick a switch and be able to stop forming opinions, you are setting yourself up for failure because you can not. We are human. If you believe your are somehow failing your patient every time an opinion enters your head, you will find yourself miserable (at best) and very likely burnt out and out of the profession.

[Axgrinder]

I've found most people already have their belief systems firmly in place by the time they get here ("here" being the circumstances you just described). Most have their own opinions regarding how they want to do things, and what they believe to be best for their loved one. I've discovered when what a family wants and needs conflict greatly with what is usually better for the pt that the family will get the final say so, unless it is something far outside of acceptable. The best you can do is try to keep everyone as comfortable as you can and weather the storm - because more often than not there will be one.

Not everyone behaves with grace and aplomb when The Big Bad hits - even I can't say this to be true about myself in every instance, so expectlng it from others seems to me to be a double standard. This is a tough time, and no two are alike for anyone.

Sometimes gritting your teeth, and working to keep a calm environment is the very best that can be hoped for. If you succeed then everything else can be dealt with one issue at a time.

[BeenThere2012, ASN, RN]

You sound like an exceptional nurse, especially for the length of time you have been in practice. Your ethics are sound, in my opinion! (Not joking)

However, we can have opinions based on our knowledge and experience. At this point in time, you are following the professional standards you were taught as you should be. As you gain experience, the support you provide families will include your own opinions based upon what you know. It's all in balance. You will do so when you are confident in your assessments of the whole picture, and hopefully no sooner.

Some families will never give up their ideas of what is best for their loved ones. Unfortunately, the stubborn ones are often functioning out of some aspect of guilt. Some simply need a different perspective, presented in a diplomatic way to see things differently. It is okay to give your opinion, when needed to help, based upon sound judgement.

[BeenThere2012, ASN, RN]

Every state has a law that defines who can make medical decisions for a person.

In my state the law says that the patient makes the decision.

If the patient is not able to make medical decisions, then the healthcare POA makes the decisions.

If the patient has not appointed a healthcare POA, then the law specifies that the decision maker is in this order

1. spouse

2. adult children

3. parents

4. adult siblings

5. any other family member

6. friend

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

So yes, by law it does automatically default to the family if the patient hasn't specified otherwise.

Your job is to advocate for what the patient wants.

If the patient is not able to voice their choice, then it is the responsibility of the patient's decision maker to decide based on their knowledge of the patient's expressed wishes and values. It is not up to you to decide based on what you would want if you were dying.[/quote

Agree...mostly...The problem here is that family members give THEIR opinion sometimes...not necessarily what the patient wanted. They are the ones "suffering" with what they are seeing and don't like it...don't know what to do about it...don't like the IDEA of not feeding for example.

[Brandi,RN]

The resident is your patient and your priority. Your job is to advocate for your patient. It's your job to have an opinion. I do agree it's the new nurse rose colored glasses, 6 months is not much time at all as a nurse. The things you mentioned are detrimental to the resident, I can see maybe having them up in a chair and blended foods at being of process but there comes a point where that is just not possible. It's hard to watch people die and it's hard for most families to cope - it's part of the job.