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?
