I sit in my patient's room on a normal workday observing a talk between my patient's mother and a physician. I look at my patient, a young woman in her twenties lying in the intensive care unit (ICU) with multisystem organ failure. To the right of her bed is a ventilator breathing for her. To the left are numerous bags of intravenous fluids, three vasopressors to keep her blood pressure stable and a pain medicine for her chronic pain. She had been in and out of hospitals and chronically ill for the duration of her short life. The medical team was explaining to her mother that this time her lungs did not have the capacity to sustain her. We were asking the mother to change her child’s code status from full care to comfort care, since recovery was deemed impossible and the patient had been in the ICU for two months with two code events.
As the doctors took their leave, I remained behind in an attempt to offer some solace or guidance to my patient’s mother, as this was the third time we had to meet with her during such dire circumstances. It concerned me that she had such a glazed look on her face. I asked her if there was anything I could do or offer any clarification on what had been discussed. She answered, “I understand how sick she is, but asking me to not hold on to that chance of a miracle is impossible. I can’t make the decision to end her life. No mother could do this. Who could live with that decision? That’s my baby.”
This case affected many healthcare providers in our ICU. The patient had dermatomyositis, an uncommon disease marked by muscle weakness and a distinctive skin rash, and classified as a chronic inflammatory myopathy -- one of only three such diseases. Multiple members of the medical team said that this woman had presented with the worst case they had ever seen. She had multiple jejunal and cecal perforations, which resulted in enterocutaneous fistulas, multiple episodes of pneumonia and respiratory failure leading to placement of a tracheostomy tube, dysphagia resulting in a jejunal tube for feeding, and community-acquired pressure ulcers. She had been transferred from long-term facilities to the ICU and then back again several times over the last few years. The woman appeared lethargic and cachectic with chronic full body pain. She had developed bowel ischemia, which led to intense acute abdominal pain. Her life consisted of being turned every two hours while sleeping; when awake, she whispered that she was in pain. The palliative care team had recommended a hydromorphone infusion, which seemed to be controlling her pain better.
Changing code status to comfort care had already been addressed multiple times. For the past year, the code status had changed from do not attempt resuscitation (DNAR) to full code many times. The family dynamic was challenging because her parents lived in a different country and couldn’t visit often. When the mother came to visit, she would beg her child to wait for a miracle. Her brother was regularly at the bedside, always very attentive and caring. When code status was discussed, the brother would convince her to stay full code and always in full care. The patient’s attitude about the fact that she was dying was that of ambivalence. She had previously repeated that she wanted to stay alive for her family, but when they were out of the room, she would tell the primary team of doctors that she was “tired of living like this.”
Now she is no longer lucid. During the last family meeting, comfort care was again brought up. The mother and brother were at the bedside. The plan was for the patient to stay DNAR full care. They all understood that the ability to cure her illnesses had ended, but they continued to hope for a miracle. The medical team determined that interventions were futile using the following definition: “A futile intervention is intervention that either has no realistic chance of providing a benefit that the patient has the capacity to perceive or appreciate, or has no realistic chance of returning the patient to a level of health that permits survival outside the acute care setting.”(1)
The staff perceived the woman’s quality of life as very poor. When the nurses would exit her room, many would have a look of shock because of the intense suffering and wasting away of this patient. Some avoided going in unless necessary; others requested to not be assigned to her. When I asked the primary team about getting an ethics consult, they seemed to struggle with the idea. As one physician explained, they had already thought about this but because, when lucid, the patient stated herself that she wanted to be in full care --even though it was at the family members’ prompting -- there was nothing more they could do.
I sat in my patient’s room for another 12-hour shift and watched the family stare in agony the entire time. It is not uncommon to see families torn apart over disagreements in these situations, and this one, too, seemed to be at the end of their ability to control their emotions and heartache at the same time. These circumstances take a heavy toll on all involved.
Even though the patient was complicit with the family’s wishes, questions and the struggle for answers continue in these challenging situations.
This story is palpable with moral distress. Moral distress can be defined as the emotional turmoil caregivers experience when they are prevented from doing what they feel is right. In this case it seems the nurse feels forced to provide ongoing treatment to a patient when the medical team believes a palliative approach is warranted. The pressure for this continued treatment may be generated by the patient, the surrogate, hospital policy, or legal doctrine, but it emanates from either conflicting moral compasses or different estimates on the trajectory of the patient’s illness.
Moral distress is a common problem for anyone who cares for ICU patients. Like most complex problems of modernity, the seeds were sown decades ago when technological advances created a world where good intentions occasionally met with unforeseen consequences. The most obvious example of this derailment of intentions in the ICU is mechanical ventilation. In 1952 at Blegdam Hospital in Copenhagen, Bjørn Ibsen addressed the problem of respiratory failure during a poliomyelitis epidemic with positive pressure ventilation. The success of this action led to the widespread use of positive pressure ventilators, saving lives but also creating a kind of purgatory for some, where dying is prolonged but death is still the outcome. There are other examples of life-saving treatments that save many but trap some, including renal replacement therapy, pacemaker technology, ventricular assist devices, and even antibiotics.
It is only fair to confess at the outset that in response to this nurse’s moving narrative of an all-too-common story in the ICU, I offer more analysis than solution. Perhaps herein lies the reality: in both critical care and ethics, solutions are frequently unclear, but thorough analysis and a hearty struggle with the problem often lead to good choices.
It may be obvious but should be stated that the moral distress belongs to the caregiver and not to the patient. The distress is what we feel in response to differences in other people’s moral sense of right and wrong. Embedded in this particular patient’s story are the disagreements that arise because we have created a healthcare system that is part autonomy, part beneficence, part nonmaleficence, and part justice. These parts, or principles, are our ethical framework. How much weight we give to each principle depends on our individual morals. Clashes occur when our system of weights is different than those of our patients, their families or other colleagues.
Let’s begin by remarking on the inconsistency that is generated when we deem that recovery is not possible and at the same time “ask” families to assign their loved one to a DNAR code status. By “deem impossible” (not just “improbable”), we are making a pronouncement about futility. We are stating that we know the outcome. In this case, the patient will not live to leave the ICU, but we request the family to make a choice. We tell them it is a choice, but we imply that there is only one right answer. Some choice!
The next general topic that should be discussed is physical pain. We should only allow the competent patient to choose physical pain in favor of consciousness. A healthcare agent should not make that choice for the patient. Appropriately, palliative care was involved and assisted with this issue in this case.
The patient’s statement that she was “tired of living like this” is a problematic one. We want so much for the patient to make the choice we believe we would make, so we are often willing to interpret statements like lawyers trying to make a case, rather than impartial caregivers trying to help the patient choose what is best.
Finally, this discussion is an ethics consult, although it may be after the fact. A real-time ethics consult can often help caregivers find comfort in what they do, what they have to do, and in what they don’t want to do.
Moral distress is a phenomenon that is likely to generate angst in all ICU caregivers at one time or another. Tools to deal with moral distress will likely be forthcoming. In the meantime, to rephrase the words of Francis W. Peabody from almost 90 years ago,(2) the secret of the care of the critically ill patient begins with the care of both the critically ill patient and their family.
1. University of California San Diego Health Science policy MCP 381.1, Limitation of Life Sustaining Treatment.
2. Landmark article, March 19, 1927: The care of the patient, by Francis W. Peabody (JAMA. 1927;88:877-882). JAMA. 1984;252(6):813-818.