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, liesIt 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.” 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.” 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 mediationThe 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:
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. 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. 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.
2 Comments
Mother was all over the media last Sunday, May 12. She still lingers on social; print has moved on.
Why give just one day to someone who gave you a whole life? Or should she be grateful to get at least one despite all the polls and politics? The first thing I read that day was the piece by Dr Mazda Turel, the inimitable surgeon-scribe. Let me spare you the spoilers save one: you are sure to appreciate the O Henry twist at the end. Find “The surgical love” on his website named after him. That article reminded me of an old man I knew, a security guard at a place of worship. I have often seen him having a simple lunch. There, under a shade, slowly munching his roti and subzi. Around him would be some squirrels and birds patiently waiting for him to share a morsel. Yes, he brought a little extra for them always. He was no woman. But he was mother to them. Is love a divine energy that transcends gender and species? You must be very fortunate if you are able to love and be loved. Doubly so if that energy originates from and returns to mother. What if there was an agency that could kill whoever you wanted at a bargain rate? The more you want dead, the less you have to pay. How long would your list be so that you can make the most of the bargain?
It was not easy for Peter, the central character in Neil Gaiman’s short story, “We can get them for you wholesale” to find an assassination agency. Finally, he found one and went on to have a meeting with one of the sales guys from the firm. Peter wanted to start with one guy in the office who he suspected was having an affair with the woman he was engaged to. Then the sales guy offered a two-for-one deal, just 250 pounds each. After some thought, Peter added the woman’s name. At their next meeting, the sales guy offered an even better deal—an irresistible bulk rate of 450 for 10. Peter took some time to think of the 10, “hunting for wrongs done to him and the people the world would be better off without”. It included his boss, the Physics teacher from school, an annoying TV newsreader and a neighbour with a yappy dog. After the list of 10 was ready, Peter was very satisfied with “an evening’s work well done”. He enjoyed the feeling of power he felt as he tightly clutched the list deep in his pocket right through work the next day. At the next meeting, the sales guy mentioned more enticing offers. Finally, irresistibly drawn down the path of better bargains, Peter asked how much it would cost to kill everybody in the world. “Nothing,” came the answer. “We’ve been ready for a long time. We just had to be asked.” Peter was mulling over what that meant when he heard cries all around and a soft knock on the door. Usually, I drop off to sleep after I complete a few pages of the book I am reading. After this story, I was wide awake, thinking of the people who might employ such an assassination firm.
They have been ready for a long time. And so many of us have already asked them. How long do we ignore the knock at our door? |
AuthorVijayakumar Kotteri Categories
All
Archives
November 2024
|