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  • BIOETHICS FORUM ESSAY

“No one was listening to us.” Lessons from the Jahi McMath Case

“It was like he thought we were dirt.”

This is how Jahi McMath’s grandmother, Sandra, describes having been treated by one of the doctors at the Oakland’s Children Hospital ICU. The family’s experiences were described in a recent New Yorker article that went viral on the internet and has reignited the decades-old debate on brain death.

The Jahi McMath case has bewildered bioethicists and physicians for four years. Having initially fulfilled all the standard criteria for diagnosis of brain death, Jahi then began showing, and has continued to show, signs of hypothalamic function. Court records indicate that eight months after her brain injury, Jahi underwent sexual maturation in the form of menarche and thelarche, a scenario unprecedented in medical literature.

While it has been argued that clinical criteria for brain death do not correspond to metabolic status or to a strictly  biological definition of death, the Jahi McMath case has stimulated renewed interest in and discussion about the usefulness of the brain death construct for broader public policy.

Fifty years ago, in 1968, Dr. Henry Beecher, of Harvard Medical School, issued the first rationale for the concept of brain death. This month, the Center for Bioethics at Harvard Medical School will present a public conference that will explore the legacy of the 1968 report. The Hastings Center is a cosponsor.

Robert Truog and Franklin Miller, for example, have encouraged a more open acknowledgement that brain death is a useful social construction for formulating public policy, but that it is not a “coherent with any biologically plausible definition of death.” James Bernat, on the other end, acknowledges that while brain death may not adhere to a biological definition of death, it is the “most accurate biophilosophical representation of human death,” which remains critical to optimum public policy with “relatively inconsequential shortcomings.”

Regardless of how this debate plays out and whether we change our understanding of brain death, the McMath case raises an additional issue that led to this quagmire in the first place. It’s now clear, as we have learned more about the family’s experience, that emotional intelligence on the part of health care professionals and the practice of effective communication are critical in difficult cases like this one.

Emotional intelligence is the ability to understand your own emotions and the emotions of people around you. There are few instances as sensitive as the time of declaration of death. As such, when health care providers engage families or surrogates in conversations that involve explaining brain death, the situation demands that the providers demonstrate emotional intelligence.

“No one was listening to us . . . if Jahi were a little white girl, I feel we would have gotten a little more help and attention,” said Nailah, Jahi’s mother in the New Yorker article.

Even a cursory reading of the New Yorker article reveals how Jahi McMath’s family felt disrespected and their wishes dismissed – on every occasion. Certainly, the attending physicians did not intend disrespect, but it is how their actions and words were perceived by Jahi’s family.

Last December, the Boston Globe’s Spotlight team published a series of riveting articles that demonstrated that African-Americans (even in the medical mecca of Boston) suffer disproportionately from health disparities and that the medical community has not earned their trust. The reverberations of injustices inflicted upon African-Americans, including the Tuskegee Study of untreated syphilis remain. To ignore this context when having end-of-life discussions with minority families is to ignore reality itself.

Emotional intelligence on the part of doctors and other health care providers ought to consider questions such as: Who is the patient? What are the values of the patient and his or her family? How can I provide maximum comfort and benefit? How can I show respect for what they are worried about or care about?

Information and guidance on how health care providers can employ emotional intelligence to improve communication with patients and surrogates about end-of-life care is wanting. However, research provides some practical advice. Providers should start with establishing a supportive and empathetic relationship with patients and surrogates, starting with recognizing that illnesses impose severe stress on patients. Patients and surrogates should be encouraged to speak more openly about their fears and expectations, which will likely increase trust.

Providers should also use clear, direct, and simple language, and remain truthful about the prognosis of the case and any anticipated interventions. Providers should also facilitate open discussions about identifying desired medical care and end-of-life goals. Throughout these conversations, providers ought to remember that while a particular end-of-life case may be a routine affair in their profession, it is a life-altering episode for patients and their surrogates.

It is reasonable to believe that many cases that end up in courts (including Jahi McMath’s case) could have been resolved much earlier had both parties engaged in open and compassionate conversations.

When asked about their next step, Jahi’s grandmother, Sandra, said, “If the hospital had been more compassionate, would we have fought so much?”

Junaid Nabi, MD, MPH, is a Fellow in Bioethics at Harvard Medical School and a New Voices Fellow at the Aspen Institute. Twitter: @JunaidNabiMD

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Published on: April 4, 2018
Published in: Children and Families, End of Life, Hastings Bioethics Forum, Health and Health Care

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12 comments on ““No one was listening to us.” Lessons from the Jahi McMath Case

  1. Robert Truog on

    Dear Dr. Nabi,

    I think your comments about how the medical profession has underappreciated the history of racial discrimination against African Americans, and the importance of developing a supportive and empathetic relationship with patients and families, are right on target.

    I think it is also important to remember that the doctors and nurses at Oakland Children’s Hospital have not been at liberty to talk about their impressions of the case. We do not know, and probably never will know, the full story of what happened between the family and these clinicians. As such, I think we should refrain from assuming that the case would have had a different outcome if the parties had been able to engage “in open and compassionate conversations.”

    I have been on the other side of this issue, when angry families have gone to the media to complain about care provided by me and my colleagues. As much as we wanted to tell “our side of the story,” we were rightly prohibited from doing so because of our ethical obligations to protect the confidentiality of our patients, and not to speak publicly about their care. I personally know how hard it is to be criticized in the media for lack of empathy and understanding, when I knew that the public did not have all of the facts.

    So while I am fully sympathetic to the general thrust of your message, I think we should refrain from assuming that we have unbiased knowledge of what actually happened between the family and the clinicians at Oakland Children’s Hospital.

    Bob Truog

    Reply
  2. Junaid Nabi on

    Dear Prof. Truog,

    Thank you for taking the time to read the essay, and for sharing your insights on this important issue. And I fully agree: when there are restrictions on one side of the story, it is difficult to ascertain the whole situation. Also, while there is an ethical obligation for caregivers to protect the confidentiality of their patients, the fact that they are almost never able to tell their side of the story (as you correctly pointed out), I am concerned about the moral duress this places on the caregivers.

    One of the main aims of this article was to highlight the importance of leadership in such scenarios. I am a firm believer in the concept that we should manage processes, not people. Often, we get too caught up in the specific bioethical analysis of an ethical question, and not pay enough attention to the fact that the human condition is too complex to be distilled in a couple of philosophical assertions.

    Hope this clarifies some of my thinking in this case.

    Best,
    JN

    Reply
  3. Paul Nelson on

    Doctor Nabi and Bob Truog,

    When the generational COMMON GOOD of each person’s community is not sustained and enhanced by a similar investment of Social Capital, the social discourse surrounding a dependent person’s Personal Survival Plan will almost always be highly discordant. Entrenched poverty, adolescent suicide, maternal mortality, obesity, mass shootings and child neglect, among many others, lead to encounters with our nation’s healthcare without a means to build the Social Capital traditions, community by community, necessary to mitigate their occurrence.
    .
    As tragically represented by this scenario within a Newborn Intensive Care Unit (NICU), our capability to form Trusting relationships between each person’s Family and their Extended Family with a Primary Healthcare Team, community by community, does not exist. We can no longer rely on the good will of many dedicated stakeholders to assure their own community’s COMMON GOOD.
    .
    The dimensions of Trust, Cooperation and Reciprocity involved in this issue are far beyond the mitigation capabilities of any currently strategy for healthcare reform. The Knowledge, Resources and Human Dignity necessary to fix this social dilemma already exist. We lack only the collective action to make it happen. Its likely that a nationally sanctioned, regionally supported and locally managed, community by community commitment will be required, each representing about 400,000 citizens (@ 800 nationally).

    Paul Nelson, M.D.
    Omaha

    Reply
  4. Junaid Nabi on

    Dear Dr. Nelson,

    Thank you for taking the time to highlight these important, yet often neglected, issues in health care delivery. As you correctly pointed out, a collective action that supports patients and assists in building stronger relationships with their attending physicians will go a long way in fostering trust.

    Best,
    JN

    Reply
  5. Terry Powers on

    The majority of white people in America are totally disconnected from African Americans and minorities, and really don’t know much about us. They tend to perceive themselves and being “better” than everyone else who is non white, and ignorantly think that all African Americans and minorities live in poverty or the ghetto, when there are just as many whites living in poverty ridden neighborhoods, and living on welfare and other public assistance.
    I believe that Jahi and her family were treated wrongly, because the discrimination of African Americans by whites in particular is common place in this country, and has been since this country’s inception.

    However, the videos showing Jahi moving her fingers, and breathing on her own, and moving her toes never seem to show Jahi’s face while she is doing all of this. So, I question if she is really getting better. However, if Jahi is really getting better, then doctors need to document this, instead of fighting to keep from being wrong.
    Only God knows what state Jahi is really in, and if Jahi is really alive, then I hope God allows her death certificate to be revoked, and her life resurrected.

    Reply
  6. Elaine on

    Why was this child even given surgery for snoring, I never heard of it before!!
    I wonder if they were told about the free ways of stopping sleep apnea. Losing weight, and raising the headboard of the bed works for some and is free.

    I have been wondering this ever since it happened.

    Reply
  7. Susan on

    In 2015, our family found ourselves in much the same battle as Jahi’s family. Our 12 year old son fell into a coma, and the staff of the hospital began a relentless campaign to convince us to sign the papers to donate his organs and remove him from life support. During this time, I became acquainted with Jahi’s mother, and she and I supported one another in our similar fights. We, too, were subjected to horror tales of decomposition, threats, and horrific mind games. No one listened to us, either. We, too, were treated as simple minded obstacles to their goal of parting out our son. We, however, are white. I suppose if I were African-American, I might, too, see the situation as racially based. However, I think that the situation is far more sinister. The organ industry does not see white or black or any color but green. They treat us all horrifically because we, the parents, are standing between them and a fortune in organs. One doctor said to me while standing over my comatose son, “I’m looking at over a million dollars lying in this bed.” I respectfully disagree with Jahi’s mother. Greed is the problem. To make it about race endangers families that would think themselves safe because of their skin color. When our children become commodities to them, none of us are safe.

    Reply
    • linda sue on

      You said your son was in a coma. Big difference with Jahi McMath is that she’s Brain Dead. You don’t EVER recover from that. It’s called organ donation, because it’s just that, a donation. Your son is a different story, apples to oranges. Jahi should’ve been buried years ago, but of course there’s a money issue to be dealt with. Shame on parents who do this to their brain dead, dead children.

      Reply
      • J. Wilson on

        Linda, I’m sorry, did I missed something?Are you God? Who are you to say she should have been buried years ago? You and I both know that organs are rarely “donated” just like the blood donation companies charge hospitals for donated blood, several people get a cut from the “donation” of organs. Furthermore, if Jahi were you’re relative I’m sure you wouldn’t want someone saying she should’ve been buried years ago. While I do believe that she will not recover from this, you should choose your words better.

        JW

        Reply
        • linda sue on

          . What part of brain death don’t you get? You never recover, so ya, I know more about this subject than you think. My relative was brain dead, we would have never, ever put him on a machine for nearly five years. Have you seen picture’s of Jahi? Read the court documents? Reason why mom want Jahi on a vent for so long? It’s about money, look it up, and stop
          with the insults. Look at Jahi’s photos, she’s a corpse above ground. Has nothing to do with her organs, think what you like, this girl is GONE! I’ll chose my words better when you get educated on brain death.

          Reply
    • Judy March on

      Well stated! My 35 year old son was declared brain dead in October 2013 in Portland Oregon. They encouraged us to donate his organs, which we did end up doing. But it haunts me to this day, and will continie to haunt me for as long as I live, was Tommy truly gone from us? I kept saying “what if Tommy is trying to get back to us, and it’s just taking longer than what time they’re giving us” (which was 3 1/2 days from his admission to hospital). I think the tests they utilize to determine true brain death are archaic methods that are unreliable! Lastly, I am also white and in FULL agreement with your view on the REAL issue at stake!

      Reply

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