As a physician, I have been present at the end of many lives, witnessing the profound agony families face during a loved one’s final moments. While most family members express deep gratitude for the care provided by doctors and nurses, some recount harrowing stories of unnecessary pain their loved ones endured in the final days. These distressing accounts highlight a troubling ambiguity in the care we provide, blurring the line between compassionate treatment and what can feel like unbearable torture.
Motivated by my encounters with grieving families, I dedicated the ninth season of the Fixing Healthcare podcast to exploring life’s final chapter and addressing the shortcomings in end-of-life care. The eight experts who joined me this season have profoundly reshaped how I view life and death. Here are nine powerful lessons from this season that I hope will resonate with you, offering guidance and comfort as we navigate life’s culmination.
1. “People have goals besides living longer.”
In the bestselling book Being Mortal, renowned surgeon and author Dr. Atul Gawande shares the story of his father’s death from cancer and the difficult medical decisions his family faced. In our recent conversation, he emphasized the importance of drawing the line between a life worth living and one that has lost all meaning.
“(My father’s oncologist) had eight different chemotherapies to recommend, and knew the pros and cons of each. For us, the question was: ‘What if we don’t choose any?’”
Doctors struggle to accept the limitations of medical interventions and frequently overlook patients’ personal goals. Gawande urges clinicians to ask patients: (a) “What is most important to you?” and (b) “What are you unwilling to sacrifice, even if it means your life may be shorter?”
2. “The last day of your life is not the sum of your life.”
Dr. Lucy Kalanithi, widow of Paul Kalanithi who authored When Breath Becomes Air, understands the pain of losing a loved one. Her husband’s memoir details his battle with advanced lung cancer, and her advice reflects the valuable lessons they learned together.
Lucy shared with me her worry that aggressive medical interventions would cause Paul unnecessary pain and distress in his final days, fearing that efforts to prolong his life might come at the cost of his dignity, soiling her memories of him.
Paul gently reassured her: “The last day is just one day.” His words encourage loved ones to focus on the entirety of a person’s life rather than its ending.
For families facing regrets, medical trauma, or unspoken words, Lucy offers solace: “You did your best, and that is all anyone can ever ask.”
3. “We are sexual beings throughout our whole lives.”
Dr. Pebble Kranz, a sexual medicine specialist, dispels the common misconception that sexuality must wane as people approach death. During our conversation, she highlighted that sexual desire remains a core part of human identity, enduring even into life’s final stages.
Dr. Kranz advocates for open, compassionate dialogues between patients and clinicians: “Doctors talk about poop, we talk about mental illness and all manner of very personal things with patients. Why cordon off sex as this one arena that is too personal?”
She reminds us that terminally ill patients deserve to pursue what brings them joy and fulfillment, as much as anyone else. According to Dr. Kranz, honoring our complete humanity, including our sexual identities, helps preserve life’s meaning as it draws to a close.
4. “The time to consult a palliative care physician is not when you’re dying, but before.”
Dr. Monique Schaulis, an emergency medicine doctor, insists that her specialty—palliative care—is not just for end-of-life situations. Instead, it should be integrated into medical care at every stage of serious illness to enhance people’s quality of life.
“Palliative care is transdisciplinary and holistic, focusing on patients from diagnosis to end of life,” she emphasized during our interview. It addresses physical, psychosocial, spiritual and existential distress, helping patients and families navigate complex emotions and decisions.
Importantly, Dr. Schaulis explains that hospice is just one component of palliative care, and it doesn’t represent surrender for the patient or loved ones. Rather, it focuses on making patients stronger, better nourished and pain-free. This approach most often leads to longer and more fulfilling lives compared to traditional treatments.
Former President Jimmy Carter serves as an inspiring example: he has spent over a year in hospice and is enjoying a fuller life since entering the program.
5. “No one should have to suffer.”
In a deeply personal episode, New York Times columnist Steven Petrow shared the story of his sister Julie, who chose Medical Aid in Dying (MAID) after a terminal ovarian cancer diagnosis.
Initially hesitant about MAID, Petrow’s perspective shifted after witnessing the extent of Julie’s suffering.
“I had no question whatsoever that this was a necessary thing,” Petrow said, grateful that his sister’s life ended in peace. “If people don’t have this option, there is going to be needless suffering and painful deaths.”
For patients like Julie, the ability to control their destiny—to decide how and when to alleviate their suffering—can make life more bearable. Often, just knowing they have this control can empower them to extend their lives. Julie’s story underscores the importance of maintaining personal agency and making informed decisions about our own medical care.
6. “Spiritual care is integral to compassionate medicine.”
In her chaplain role, Rabbi Melanie Aron has supported hundreds of hospitalized patients from various faiths, underscoring how spirituality and community can comfort patients.
“Religious leaders are grappling with how best to support people and provide a sense of peace and purpose in a rapidly advancing healthcare world,” she said. “Spiritual support can relieve emotional pain and suffering, helping people confront end-of-life issues.”
She emphasizes that it is important for clinicians to address the moral and ethical dimensions of dying—in addition to the medical. She has observed that when healthcare professionals integrate spiritual care into their medical practice, they contribute to emotional healing and solace in people’s final days.
7. “We shouldn’t save a life at any cost.”
Dorothee Caminiti, a bioethics expert from Santa Clara University, is interested in the ethical dilemmas surrounding lifesaving interventions. In our conversation, she questioned the principle of saving a life at any cost.
“We can extend life forever,” she said. “We need to decide if this makes sense.”
Balancing the rights of patients, the insights of doctors and the wishes of families presents a complex challenge. Caminiti highlighted the crucial role of advance directives, or living wills, which ensure that a patient’s preferences are known and respected in situations where they cannot speak for themselves. She stressed, “The best way to ensure that your healthcare wishes are honored is by documenting them clearly before a crisis occurs.”
8. “Good relationships lead to health and happiness.”
In our final episode of this season, author and public health expert Brad Stulberg reflects on his recent New York Times column, “The Key to Longevity Is Boring.”
In our interview, which will air August 27, he emphasizes that regular exercise, a nutritious diet, avoiding smoking, limiting alcohol consumption and nurturing meaningful relationships are keys to a long and healthy life.
Boring? Yes, especially when compared to the hype surrounding various unproven supplements and treatments. But Stulberg pointed to research that demonstrates that people who do these five things live seven years longer, with six of those years spent in good health.
His insights remind us that frailty doesn’t have to define how we age. Investing in our health early in life makes its end more positive.
9. “Embrace optimism at the end of life.”
Reflecting on this season’s guests on the Fixing Healthcare podcast, I’ve gained a more optimistic outlook on life’s final stages. Each of these eight experts convinced me that we can positively improve people’s end-of-life experience and uphold human dignity during these tender moments.
Palliative care can empower patients, hospice can alleviate suffering and intimacy can still flourish. Healthy habits can sustain our vitality, and spirituality can help us find peace and acceptance as we face life’s final chapter. Ultimately, the love we have cherished throughout our lives can provide comfort and support until our last breath.
While none of us relish the thought of saying goodbye, it’s reassuring to know that the end of life can be a meaningful, connected and peaceful experience—far better than today.
Please join us September 3, 2024, for the first episode of season 10. This time on the Fixing Healthcare podcast, we’re talking with experts in medical and AI technologies. This season begins with a familiar voice: returning guest and author of “Deep Medicine,” Dr. Eric Topol.
