Care & Collaboration

I’ve got a bias. Whether I’m trying to understand disputes over medical futility or distinguish palliative sedation for the dying from assisted suicide, I’m drawn to the nurse’s perspective. No one works more closely with the patient’s best interests.

My bias is rooted in heavy reliance on nurses during my daughter’s life-threatening illness. My daughter was cured, I emerged relatively sane, and while physicians accomplished what was impossible in my own childhood, it was nurses who responded at the push of a button, won our confidence and trust, and held our hands on the long walk into the new normal: Brooke, Suzanne, Michael, Phaedra, the other Brooke. It’s a long list.

Now, in trying to comprehend medical futility for a Community Ethics Committee study, it breaks my heart to think of a nurse devoted to a patient’s best interests but trapped delivering harmful care to a dying patient on life support who may feel nothing except the agony of a dressing change on deteriorating skin. I’m unclear on what the CEC might say to help the situation, but I’m glad we’re trying.

I’ve also discovered that it’s much easier to say, “Stop putting off the end-of-life conversation,” than to understand the forces that put it off. That Americans don’t want to acknowledge mortality is part of the problem, as is a physician’s aversion to admitting defeat. but acknowledging the inevitable before the end is near is crucial to good medical care, isn’t it? So bringing palliative specialists into the dialogue long before curative or therapeutic options are spent makes a lot of sense.

After spending days reading and writing about Amanda Trujillo, the Phoenix nurse fired for somehow overstepping bounds in advocating for a dying patient, I’m now studying a transcript of the roundtable discussion “Palliative Care in the ICU”  in the Journal of Palliative Medicine. There’s much useful information in it, especially with regard to a more collaborative approach to medicine that would increase the influence of palliative care from the ER to the ICU.

The roundtable was organized by the IPAL Project, an initiative from the Center to Advance Palliative Care. IPAL stresses the importance of a unified team using ICU palliative care quality indicators and ensuring that the spiritual, emotional and communication needs of patients are addressed.

The roundtable was a remarkable gathering of leading palliative care lights, including Kathleen Puntillo, an RN and Doctor of Nursing Science in the Department of Physiological Nursing at UC San Francisco. She spoke insightfully about the nurse's role and responsibilities in palliative care, and about the cost of marginalizing palliative care to the dying process. 

“We still oftentimes maintain this very narrow focus that sees palliative care only as end-of-life care, and if the patient is not deemed to be at the end of life, then it is not time to call in palliative care services,” Puntillo said. “This narrow focus prevents patients and their families from getting the different types of palliative care that are available.

“I think there are great challenges in ICUs and for ICU patients if we are not at the point where we are saying this patient is imminently dying. We have this tension, if you will, between the patient's physiological instability and the need for symptom management. Indeed, many patients in ICUs suffer from many symptoms such as fatigue, thirst, anxiety, and pain, so they have a need for symptom assessment and management. But again, this need for interventions or thoughts of interventions for symptoms often gets waylaid by the concern that we are going to make patients physiologically unstable.”

A devotion to rescue leaves little space for considering or discussing other scenarios.

“In many surgical ICUs, depending on the specialty, the focus is on rescue.” said critical care surgeon Anne C. Mosenthal of New Jersey Medical School. “There is less willingness to acknowledge some patients may die, and that palliative care is necessary. ”

How, then, to make palliative part of the fabric of care, and not a last resort waiting for the “real” care to be exhausted? 

“Some of the ICU clinicians are very proud and protective of the work they are doing in the ICU and the challenge of having a consultative service come in can be quite difficult,” said licensed clinical social worker Colleen M. Mulkerin of Hartford Hospital. “Trying to support and integrate some of the palliative care concepts and practices into what the critical care teams are doing can be so valuable. With a little bit of support and education, we as palliative care specialists are able to improve the ability of the ICU team to do family meetings, to involve families on rounds, and develop better ways to integrate patients' values and preferences for care.”

A collaborative approach, in other words.

“Effective quality improvement requires an interdisciplinary team effort,” said Dr. J. Randall Curtis of Harborview Medical Center/University of Washington. “The team needs good interdisciplinary communication and collaboration. These teams require multiple disciplines working together as opposed to professions working in silos. Our health care system historically has been very hierarchical in its design, and one of the lessons of these quality improvement efforts is that we need to find ways to empower everybody on the team to address issues and problems that they see arising regardless of their discipline or profession.”

I’ve captured only some of the roundtable highlights here, and not all participants. The full transcript is not to be missed by anyone interested in improving EOL care.