Grow Brave Through Reflection: Moral Distress in PICU (Part I)

NotReady4PrimeTime, RN

There has been a lot written in recent years about moral distress in health care. With the rapid pace of technological change it has become commonplace for patients to survive injuries and illnesses that less than a decade ago would have ended their lives. With this comes an upswing in moral distress experienced by caregivers across the spectrum. Moral distress by definition arises from the inability to act in ways that we believe to be ethical or honorable. But what sets pediatric critical care apart?

Moral distress, according to Andrew Jameton (1984), occurs when "one knows the right thing to do but institutional constraints make it impossible to pursue the right course of action." Corely et al expanded that definition in 2001 to include, "the painful psychological dysequilibrium that results from recognizing the ethically appropriate action, yet not taking it, because of such obstacles as lack of time, supervisory reluctance, an inhibitory medical power structure, institutional policy or legal considerations." ICUs are Ground Zero for moral distress.

Nurses spend more time with patients than any other health care discipline and have a much deeper knowledge of the patient and their understanding of the situation. They also have an intimate knowledge of the relative risks and benefits of a proposed course of treatment. Thus, they're intimately involved in the suffering caused by both the illness and the treatment. BUT... they're not in any position to make decisions about any of it.

Nurses have conflicting roles as employees, as care providers and as advocates. Their roles are collaborative and their input is only one small part that contributes to the care plan for which they become responsible. They also have personal values (moral agency) which may create role strain.

Role strain is created by the sense of having two masters, the organization who pays their salaries and the physicians who direct their work. And in the end, they have little power and even less authority with which to influence the direction of care decisions.

Nurses' levels of power and authority in the health care workplace are not commensurate with their level of responsibility. Our opinions are often discounted because we're "just nurses". Paternalism and authoritarianism in health care are supposed to have diminished, but they are both alive and well. "Physicians get angry, nurses withdraw" is an axiom that represents patterns of reaction to many stressors, and it applies most definitely in this situation.

Some common situations that lead to moral distress:

Medically futile and often inhumane treatment- no perceived benefit to the patient, no change in the outcome, the compulsion to preserve life at all costs
Disregard for the patient's wishes- family members overriding advanced directives
End-of-life issues- aggressive treatment with no thought to suffering or outcome "because we can"
Infliction of suffering on patients and families- roller coaster rides with raised expectations and dashed hopes
Resource allocation- short staffing, lack of equipment and supplies inhibit provision of good care
Quantity over quality- hustling patients through so the next case can be done/patient can be admitted
Toxic work environments- unsupportive managers, bullies, lack of collaboration on many levels, incompetent coworkers: undervalued and disrespected employees take their frustrations out on one another

Okay, so what's different about pediatrics? A lot.

Decision makers are parents whose choices are emotional and not always rationally considered. The American Academy of Pediatrics Committee on Bioethics Guidelines for Foregoing Life-Sustaining Treatment indicate that parental authority is not absolute and may be limited by their understanding of their child's best interests. In a conflict of best interests, whose do we consider to carry the most weight? Who are we doing this FOR? Obligations to pediatric patients have been described by some ethicists as based on the harm principle instead: the harm threshold beyond which a parent's decisions may not be supported. Societal pressures are also brought to bear. Kids aren't supposed to die. They're cute and helpless so of course someone must make choices for them.

Congenital anomalies and disorders add a layer of complexity. Instead of that healthy, perfect baby everyone expected, the parents are instead presented with a child whose appearance, health and future are not beautiful or perfect. Pushing the envelope due to guilt, anger, shame and/or denial is not uncommon for these parents. Artificial reproductive technologies compound things even more. There's a tendency for these children to be viewed as expensive possessions that have been obtained through much sacrifice and desperation. "We wanted a child so badly that we mortgaged our house and we're not going home with empty arms!"

Life expectancy is another consideration. Survivors of PICU may well have very long lives with extension of suffering to both the child and the family. Financial and logistical burdens cannot be underestimated for these children and the entire family is affected. Society also takes a hit. Social services are heavily consumed by families with special-needs children, from early intervention all the way through to adulthood and beyond. The principles of distributive justice should not be the sole determinant but cannot be ignored either.

This brings us to the concept of informed consent. One of health care's most significant legal obligations to patients is the provision of all pertinent information, both good and bad, required to reach an informed decision about their health care. There is a tendency in pediatrics to downplay the negative, the risks, while glorifying the benefits. At times there's an element of deception and most often there is a lack of time to adequately process and consider all the information before a decision is demanded. There is little room for dissent. To quote the parent of a youngster who received a heart transplant and subsequently developed post-transplant lymphoproliferative disease after a seemingly arbitrary increase in his immunosuppressive drugs, "I'm sharing our story for one reason only. For all parents out there, if your spidy (sic) senses are tingling... listen to them. Had we known this would have or could have caused cancer we woud have fought harder. Regardless of what any medical professional advises you, remember you know your child best. Learn from our mistake. Fight to be heard."

In pediatrics we care for a very vulnerable population. In our world, the "partial DNR" is fairly common. This is the practice of picking and choosing which interventions will be offered; this varies from physician to physician. The chart may include a number of options or combinations of options, ranging from a chemical code only; CPR but no drugs; CPR and drugs but no intubation; fluids and drugs but no CPR; CPR, drugs and intubation but no defibrillation; CPR for a maximum of x minutes... the permutations are endless.

Neurological plasticity is often offered as a rational for continuing with life-sustaining treatment in the face of neurological devastation. Plasticity, however, comes with no predictability of recovery potential. One neurosurgeon said, "There is ALWAYS something more I can do. But there is a line beyond which I will not go. And that is where the potential benefits are so infinitessimal that I know parents are grasping at straws. They can't see that their child is never going to be the child they knew before this event." Again, children who survive this sort of PICU stay may (will) require life-long, physically and emotionally draining, extensive care from their families who are ill-prepared for the changes to their lifestyle and that of their other children. When considering burden of care, not even ethicists agree where the greatest emphasis should fall.

I offer two opposing views of hope:

"Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work. You never give up." (Anne Lamothe)

"Hope in reality is the worst of all evils, because it prolongs the torments of man." (Friedreich Nietsche)

Which of these do YOU believe?

**VivaLasViejas, ASN, RN** · Jun 16, 2011

Excellent article, janfrn. This is exactly why I could never be a PICU nurse........I bless you nurses who can do this!

VickyRN, MSN, DNP, RN · Jun 16, 2011

Excellent article, Jan. And I echo what Viva said - I so admire what you and other PICU nurses do, but I could never do it myself.

My idea of hope? I believe hope is to the human spirit as oxygen is to the corporeal body. One must have it to survive. My personal philosophy is we should never take away a patient's or family's source of hope, no matter how unrealistic it may seem to us. We should never take away hope unless there is something we can give in return to help the person/ family cope.

The family is often going through a process of grief (remember Kübler-Ross' 5 stages) and denial can take a long time to get through. It is very difficult seeing this process over and over again, knowing what we know, and waiting for the family to process everything and get to the point where they are ready to let go. Some never get to this point.

NotReady4PrimeTime, RN · Jun 16, 2011

Most days my personal definition of hope is a mixture of each. Some days I'm totally Dickenson and "hope is the thing with feathers" and others I tip more toward Nietsche. I know all too well that hope is all that keeps us going when a family member is in the ICU. And I know that over time hope evolves into an adjusted reality. When I'm caring for some of these kids who are clearly not going to get better, I always try to find something positive I can focus on for the family, even if it's just the whiteness of their teeth. I try very hard not to bolster false hope though. And that's a tough line to walk.

umcRN, BSN, RN · Jun 17, 2011

Excellent article!

Blessed2LoveNursing · Jun 17, 2011

Thank you so much for this blog, Jan. I definitely needed to read that and let it sink in. I will be transferring (from Mother Baby) to PICU on 7/10, and I'm very excited!! Ever since I was in nursing school, I have wanted to be a PICU nurse. It's where the Lord has always put my heart, and I am fully dedicated to a long future in peds critical care. I thank you for your wisdom and experience.

Angel

NotReady4PrimeTime, RN · Jun 17, 2011

Blessed, you're following my path! I spent 2 years in an intermediate care nursery before moving to PICU, where I had been called from the minute I decided to become a nurse. The next part of this blog will discuss the effects of moral distress, not only on the nurse, but on the whole sphere of care. Part III will be a case study, and Part IV will examine self-care. I hope you'll join me for them.

BeccaznRN, RN · Jun 17, 2011

Fantastic article, especially from your dual points of view. Much of what you described applies to our NICU population as well. I'm looking forward to reading your next three entries!

Blessed2LoveNursing · Jun 17, 2011

Blessed, you're following my path! I spent 2 years in an intermediate care nursery before moving to PICU, where I had been called from the minute I decided to become a nurse. The next part of this blog will discuss the effects of moral distress, not only on the nurse, but on the whole sphere of care. Part III will be a case study, and Part IV will examine self-care. I hope you'll join me for them.[/quote
I'll definitely be looking out for your next parts in the "series"!! How cool that our career paths are similar!!!
Angel

wooh, BSN, RN · Jun 18, 2011

Nurses spend more time with patients than any other health care discipline and have a much deeper knowledge of the patient and their understanding of the situation. They also have an intimate knowledge of the relative risks and benefits of a proposed course of treatment. Thus, they're intimately involved in the suffering caused by both the illness and the treatment. BUT... they're not in any position to make decisions about any of it.

This. So much this.

I had to request myself not assigned to a particular patient anymore. We've been doing so many futile tests, so much futile treatment. The mom thinks she has a point where she'll say, "No more." But she isn't there yet. And the docs feed into it. To top it off, a couple of brand new residents/students got hold of the case, and of course they're eager to "fix" the kid, they're the last thing we need.

Each test, each treatment, I ask the MDs ordering it, what difference will it make. Doesn't make a difference, they're going to "fix" this or "fix" that, not changing the big picture one bit except that I'll have to torture the kid some more.

The mom says she's "Waiting on God to tell her" that it's the end. God's been shouting it so loud that everyone in the hospital has heard it except her.

The medical staff spends a few minutes in the room, writes the orders, goes on to the next room. Us nurses are stuck there, doing the dirty work, with no power to stop it.

NotReady4PrimeTime, RN · Jun 18, 2011

Yes, this is not an unfamiliar scenario. I've heard those same words from coworkers and from parents many times. We all cringe when we hear the physician say to the parent that "things look a little bit better today", meaning of course that the labs are just the slightest bit less abnormal, or that the BP only tanked twice in the last 12 hours instead of five times. I privately call it the clutching-at-straws speech. When you read Part II, you'll see that some of your words are in there almost verbatim, only I wrote them yesterday.

KristeyK · Jun 19, 2011

What a great article! I am currently a student, and PICU is one area I feel drawn to. (I'll be able to better know about how drawn to Peds in general at the end of this semester, as Peds is my next clinical rotation.) I cannot wait to read your upcoming articles.

Grow Brave Through Reflection: Moral Distress in PICU (Part I)

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