The mediator who helped lives leave in peace

How would you like a lawyer by your side when you are critically ill? No, not to finetune the will. But to compassionately mediate as you, your family and the doctors struggle to take critical decisions about your very life.

Nancy Dubler, the lawyer-turned-bioethicist who “pioneered bedside methods for helping patients, their families and doctors deal with anguishing life-and-death decisions” would have loved to help you.
In its tribute to her after she passed away on April 14,  The New York Times described her as the “mediator for life’s final moments”. She was 82.

Dubler founded the Bioethics Consultation Service at the Montefiore Medical Center in Bronx, USA. The Harvard-educated lawyer did this to “level the playing field and amplify nonmedical voices in knotty medical situations.” The team included lawyers, bioethicists and philosophers who carried pagers to alert them about ethical emergencies.

In her 1992 book, Ethics on Call: A Medical Ethicist Shows How to Take Charge of Life-and-Death Choices, Dubler observed that modern medical technology “lets us take a body with a massive brain hemorrhage, hook it up to a machine, and keep it nominally ‘alive,’ functioning organs on a bed, without hope of recovery.” And the bioethicists help to untangle the “web of rights and responsibilities that ensnares all patients and caregivers.”

Clarity cuts through silence, lies

It was at the end of 2005 that’s Dubler warned about the exponentially increasing conflict in medicine. Nineteen years later, the confusion and the conflicts have only got worse. Economic factors like insurance now play a significant role.

As Dubler put it, “The dynamics of the doctor-patient and provider-patient relationships have been deformed by the increasing focus, in fact and in the media, on the cost-containment thrust of both managed care and acute care medicine. There are simply more parties to any decision and thus greater potential for misunderstanding, misinformation, disagreement, and dispute.”
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In A Hastings Center Special Report on Improving End of Life Care Dubler cites a case when the ICU team requested bioethics mediation because the family was not letting them discuss with the patient about his future care. The patient was alert and aware and had recently been removed from a ventilator. The decision they needed was about placing him back on ventilator in case the need arose.

The medical team told Dubler that the patient’s multiple cardiac problems had been “addressed to the maximum medically.” His two sons, loving, devoted and who stayed with the patient, vehemently opposed any such discussion as they felt it would upset their father.

The sons knew that their father was very sick but “the independent and proud person” needed hope to go on.
Dubler cited studies that established “when family members try to shield the patient from bad news, the patient usually knows the worst, and the silence is often translated into feelings of abandonment.”

Finally, they thrashed out a format and Dubler spoke to the patient.

After reintroducing herself to the patient who was “clearly very weak and tired,” Dubler asked if he would want his sons to make decisions for him if he was unable to do so. He was also okay with the order of decision-making, the older son first. Then came the important question of whether the patient would be willing to be intubated again if the doctors thought it necessary. The patient said, “I would think about it.”
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This mediation defused the conflict about sharing information with the patient. At least, the patient and everyone else had a resolution with which they could work. As Dubler observed, “The mediation prevented the bifurcation of family and staff. It was labor intensive, requiring two hours, but it provided clarity going forward.”

The tools of bioethics mediation

The bioethics mediator comes “fresh to the facts of the case, impartial to the situation of the case, uninvolved in the prior treatment decisions in the case, and unallied with any party in the particular disagreement.” The process helps the parties to identify their goals and priorities and to generate, explore, and exchange information and options. Of course, the agreement reached must have sufficient and realistic structural supports to become “the reality of care.”

As Dubler stated, bioethics mediation helps to:

• identify the parties to the conflict
• understand their stated and latent interests   
• level the playing field by minimizing disparities of power, knowledge, skill, and experience that separate medical professionals from the patient and family
• search for a time-sensitive common ground
• reach a principled consensus, legally and ethically.

Conflict in end-of-life decisions can be potentially destructive for surviving family members. Skilled bioethics mediators committed to managing, not banishing, disputes can help to tame some conflicts.

In her tribute to Dubler, Nancy Berlinger, a senior research scholar at The Hastings Center, says: “She always kept her eye on the reality of the experiences of being a patient, being a family caregiver, being the clinician in the room, and being responsible for the care of this patient and for discussions with this family. She would remind clinicians of their basic ethical duty—to be faithful to that person in the bed—and would remind bioethicists that when we were discussing ethical challenges, identifying principles, and crafting guidance, the same duty applied to us.”

Thank you, Nancy Dubler, for devoting your life to helping many lives depart in peace, without being shrouded in conflict.
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Reading about Dubler introduced me to the concept of bioethics mediation and raised some questions. Is this practiced in India? Is it part of palliative care? If it is not, should it be?
If feasible, should a compassionate lawyer be a part of the team responsible for the patient in the final stages?
I am hoping to be educated by my knowledgeable friends in palliative care. 

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Sources
Improving End of Life Care: A Hastings Center Special Report, November - December 2005.
The New York Times, May 10, 2024.
Image of Nancy Dubler: The Hastings Center.