Beyond Medicine: 'Being Mortal' Challenges Healthcare's Approach to Death and Dying

How do you talk about death with a dying loved one? How do you confront your own pending death? Explore the intricacies of end-of-life decisions.

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STORY AT-A-GLANCE

• "Being Mortal" follows Dr. Atul Gawande as he explores the intricacies of end-of-life decisions, revealing how medical training often does not adequately prepare doctors for the realities of death and dying

• The documentary is based on Gawande's best-selling book and uses personal stories, including his experiences with his father's illness and death, to discuss the balance between maintaining hope and accepting realistic outcomes

• Gawande advocates for a shift in medical and societal perspectives to prioritize both the quality of life and the dignity of the dying process, rather than solely focusing on curing illness

• The film highlights the challenges doctors face in letting go of aggressive interventions that may extend life but can also lead to prolonged suffering and diminished quality of life

• Gawande emphasizes the importance of palliative care specialists who focus on end-of-life care, advocating for earlier and more honest conversations about death with patients and their families

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This video from the "Frontline" series, titled "Being Mortal," follows Dr. Atul Gawande as he explores the complex relationships between doctors, patients, and end-of-life decisions.

Based on his best-selling book "Being Mortal," Gawande discusses how medical training often falls short in preparing doctors for the realities of death and dying. The documentary highlights personal stories, including Gawande's own experiences with his father's illness and death, to illustrate the challenges in balancing hope with realistic outcomes and the importance of quality life in the face of terminal illness.

Overall, "Being Mortal" encourages a shift in perspective within the medical community and society at large, urging a balance between curing illness and fostering meaningful, dignified final days for patients. Gawande emphasizes the importance of personal choice and the value of life until its natural end.

He also highlights the futility of aggressive medical interventions when someone is at the end of life. It oftentimes will not improve the patient's quality of life and may actually lead to prolonged suffering instead.

This is oftentimes extremely difficult for doctors, who are trained to exhaust all avenues for an ailing patient. However, as noted by Gawande, "the two big unfixables are aging and dying. You can't fix those." The question then becomes, how do you let go, and how do you talk about death and dying in a compassionate way?

Dueling Narratives

This kind of heart-based education may be particularly important in light of the recent trend that promotes euthanasia as a practical solution to the economic cost of caring for the elderly. As noted by Dr. Mattias Desmet in an April 25, 2024, article:¹

"A few weeks ago, the director of a government health insurance fund stated in an article published on the website of Belgian national television that euthanasia should be considered as a solution for the rapid ageing of the population. Exactly. Old people cost too much money. Let's kill them.

These … are the words of only one man. Yet such words are not printed in the newspapers in such a guileless way if there is not a certain tolerance for such messages in society. Let's face it: some people want to get rid of the elderly.

And these people look suspiciously lot like those who blamed you for being a heartless criminal when you suggested that the corona measures would do the elderly more harm than good. Upon a closer examination, the sentimental 'protection of the elderly' during the corona crisis was rather cruel and absurd.

For instance: why were the elderly dying in hospitals not allowed to see their children and grandchildren? Because the virus could kill them while they were dying?

Beneath the surface of the state's concern about the elderly lurks exactly the opposite: the state wants to get rid of the elderly. Soon there might be a consensus: everyone who wants to live beyond the age of seventy-five is irresponsible and egoistic …

Jacques Ellul taught us that, for propaganda to be successful, it must always resonate with a deep desire in the population. Here is what I think: society is suicidal. That's why it is more and more open to propaganda suggesting death is the best solution to our problems."

While "Being Mortal" calls for the enhancement of dignity and quality of life for the elderly through improved medical and societal practices, Desmet warns that the current societal and economic pressures and political narratives could lead to complete opposite — diminished care and respect for the elderly.

Basically, the two sources highlight a potential ethical crisis in how modern societies value life at its later stages. Which way will we go? Time will tell, but I sure hope we collectively decide to move in the direction indicated by Gawande. As noted by Frontline, "The ultimate goal, after all, is not a good death but a good life — to the very end."

When the Dying Are Young

It's even more complex and emotionally excruciating when you're dealing with a younger person with an incurable condition. Gawande speaks to the husband of a 34-year-old female patient who was diagnosed with late-stage lung cancer during pregnancy. A few months later, she was diagnosed with yet another cancer, this time in her thyroid.

He candidly admits that even though he knew the situation was hopeless and that she would assuredly die, he couldn't bring himself to propose the family spend what little time they had enjoying each other. Instead, he went along with their wishes to try one experimental treatment after the other.

"I've thought often about, what did that cost us?" her husband says. "What did we miss out on? What did we forgo by consistently pursuing treatment after treatment, which made her sicker and sicker and sicker. The very last week of our life, she had brain radiation. She was planned for experimental therapy the following Monday …

We should have started earlier with the effort to have quality time together. The chemo had made her so weak … It was exhausting and that was not a good outcome for the final months. It's not what we wanted it to be.

In the last three months of her life, almost nothing we'd done — the radiation, the chemotherapy — had likely done anything except make her worse. It may have shortened her life."

This case was a turning point for Gawandi. He found it "interesting how uncomfortable I was and how unable I was to deal well with her circumstances." Her untimely demise, and his inability to help her and her family to make the best use of the little time she had left led him on a search to find out how other doctors were handling these difficult circumstances.

Palliative Care Physicians Specialize in End-of-Life Care

As noted in the film, talking about and planning for death is so difficult, there's an entire specialty — palliative care physicians — dedicated to these tasks. Many doctors will skirt these conversations with patients altogether, referring them to a palliative care specialist instead.

Gawandi interviews palliative care physician Kathy Selvaggi about how best to go about discussing death with a patient. "Her technique is as much about listening as it is about talking," he says. When asked what would be on her checklist for what doctors ought to do, she replies:

"First of all, I think it's important that you ask what their understanding is of their disease. I think that is first and foremost, because oftentimes what we say as physicians is not what the patient hears.

And, if there are things that you want to do, let's think about what they are, and can we get them accomplished? You know, people have priorities besides just living longer. You've got to ask what those priorities are. If we don't have these discussions, we don't know …

These are really important conversations that should not be waiting the last week of someone's life, between patients, families, doctors, other health care providers involved in the care of that patient."

Difficult Conversations

Gawandi goes on to recount the conversation he finally had with his parents, and how important that ended up being.

"There's no natural moment to have these conversations, except when a crisis comes, and that's too late. So, I began trying to start earlier, talking with my patients, and even my dad. I remember my parents visiting. My dad and my mom and I sat in my living room, and I had the conversation, which was, 'What are the fears that you have? What are the goals that you have?'

He cried, my mom cried, I cried. He wanted to be able to be social. He did not want a situation where, if you're a quadriplegic, you could end up on a ventilator. He said, 'Let me die if that should happen.' I hadn't known he felt that way.

This was an incredibly important moment. These priorities became our guideposts for the next few years, and they came from who he was as the person he had always been."

He also talks about how infuriating it was to hear his father's oncologist hold out unrealistic hope in the same way he'd done in the past:

"As the tumor slowly progressed, we followed his priorities, and they led us and him to choose an aggressive operation and then radiation. But eventually paralysis set in and then our options became chemotherapy. So, the oncologist lays out eight or nine different options, and we're swimming in all of it.

Then, he started talking about how 'You really should think about taking the chemotherapy. Who knows, you could be playing tennis by the end of the summer.' I mean that was crazy. It made me very mad. This guy's potentially within weeks of being paralyzed.

The oncologist was being totally human and was talking to my dad the way that I have been talking to my patients for 10 years, holding out a hope that was not a realistic hope in order to get him to take the chemotherapy."

When a patient is running out of time, they need to know that Gawandi says, so that they can plan what needs planning and make the best of what's left. "We were still, in the back of our minds thinking, was there any way to get 10 years out of this?" Gawandi says. His father, himself a surgeon, finally said no, "and we needed to know that."

"Medicine often offers a deal. We will sacrifice your time now for the sake of possible time later. But my father was realizing that that time later was running out.

He began really thinking hard about what he would be able to do and what he wanted to do, in order to have as good a life as he could with what time he had. I guess the lesson is you can't always count on the doctor to lead the way. Sometimes the patient has to do that."

As Life Runs Out, Joy Is Still Possible

The film also features the case of Jeff Shield, whose story poignantly illustrates the end-stage journey of a person dedicated to "dying well." As his options for treatment dwindled and the effectiveness of medical interventions decreased, Jeff faced the reality of his condition with remarkable clarity and foresight.

As his physical world began to narrow down to the confines of his home and eventually his bed, Jeff's emotional and social worlds expanded significantly. He made a conscious decision to focus on the quality of life rather than prolonging it at all costs.

This decision marked a profound shift in his journey, moving from aggressive treatments to embracing moments of peace and connection with his loved ones instead. Surrounded by family and friends, Jeff's home became a place filled with love, sharing, and support.

His discussions about the future, his acceptance of the nearing end, and his arrangements for his own care allowed him to take control of his journey in a way that aligned with his values and desires. This control and the presence of his loved ones helped him find peace in his final days.

Jeff's story is a powerful testament to the idea that even as the physical space of a person diminishes, their emotional and relational world can grow immensely. His end-stage journey, marked by profound connections and a peaceful acceptance of his fate, highlights the importance of focusing on what truly matters at the end of life — comfort, love, and dignity.

"Jeff Shield's words about his last weeks being his happiest seemed especially profound to me because they were among his last words. He died just hours afterwards," Gawandi says. "In medicine, when were up against unfixable problems, we're often unready to accept that they are unfixable, but I learned that it matters to people how their stories come to a close.

The questions that we asked one another, just as human beings, are important. What are your fears and worries for the future? What are your priorities if time becomes short? What do you want to sacrifice and what are you not willing to sacrifice?"

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1. Mattias Desmet April 25, 2024