The Silence Doctors Are Keeping About Millennial Deaths
Several years ago, in my work as a palliative-care doctor, I cared for a man in his 60s who had been mostly healthy before he was diagnosed with stomach cancer. After three different treatments had failed him, his oncologist and I told him that a fourth treatment might buy him a few weeks at best. “Send me back to Boston,” he said immediately. He wanted to smell the Atlantic, see his childhood home. He made it there, dying a week later.
My patient died on his own terms: He was comfortable, fully informed about his worsening cancer, and able to decide where he wanted to die, whom he wanted to be with. This is the type of proverbial “good death” that our medical system is slowly learning to strive for—but not necessarily for younger people.
In the hospital room next to this man was a young mother who, like me, was in her 30s. We bonded over our love of ’90s music and the Southern California beaches where we’d built sandcastles as children and stayed out late as teenagers. She, too, was dying of Stage 4 stomach cancer; I first met her when her oncology team asked if I could help manage her pain and nausea. She would rest her hands on her protruding belly, swollen with fluid and gas because cancer blocked her bowels; she couldn’t eat, so medications and liquid nutrition dripped through a large catheter threaded up a blood vessel in her arm and into her heart.
Like her older neighbor, she had been through many different treatments, which had failed. Yet when she asked her oncologist how much time the next medication might buy her, I remember him telling her that he didn’t have a crystal ball while encouraging her to stay positive: She had made it through other harsh treatments, and she still had promising options. Her husband reminded her that she had a lot to live for.
Conversations like this one are happening every day: An unprecedented number of young Americans are dying of cancers typically found in older people, with diagnoses rising most rapidly among those in their 30s. Millennials born in 1990—at the peak of the generation—are twice as likely to develop colon cancer as Baby Boomers born in 1950. Younger adults are being diagnosed with cancers at more advanced stages, and may suffer from more aggressive tumors than older adults. In my work caring for these patients, I have seen the ways their age influences how their medical teams and families view them, the choices about treatment we hope they will make, the silence we maintain around their mortality. Their youth can become a justification to pursue physically devastating and at times ineffective treatment; the unspoken assumption is that they want to extend their life as long as possible, regardless of its quality.
My patient knew that her cancer was incurable, that every time one treatment stopped working, the next one was likely to be harsher and less effective. Though she had once found consolation in the possibility of more treatment, she now feared that it might worsen her struggle to make it through each day. Yet even as her cancer grew, both her doctors and her family hesitated to talk with her about the inevitability of her death, and what she wanted the rest of her life to look like.
[Read: The meaning of silence in conversations about death]
Younger adults face unique stressors when they are diagnosed with cancer: They might worry about whether they will be able to have children or see their children grow up. They may not have stable health insurance or be able to finish school. And they must face sudden uncertainty and grief while watching their peers move forward in their jobs and relationships. Physicians’ efforts to be sensitive to this constellation of losses by delaying emotionally charged conversations may be well intentioned, but that instinct hurts younger patients in a different way, by depriving them of information and choices offered more easily to older patients.
And young patients want information about their prognosis and the opportunity to share how they’d like to be cared for at the end of their life. Without these discussions, many suffer through situations they wanted to avoid, such as dying in the ICU instead of at home, and physicians may overtreat younger people with harsher and sometimes unproven therapy strategies not offered as readily to older patients. Those treatments help even younger people survive only marginally longer.
My patient’s oncologist believed that her body and healthy organs could endure toxic therapies; the question of whether she could endure, let alone enjoy, the life she was living came a distant second. Just because the majority of her organs still worked didn’t mean that she’d want more treatment, or that more treatment would help her to live the life she wanted.
[Listen: How to live when you’re in pain]
Still, her family wanted her to have every possible chance, even though she struggled to play with her son, who mostly saw her sick or asleep. “A chance for what?” she asked me, gesturing at her bruised arms and a bin filled with vomit. She craved freedom from hospitals and chemotherapy suites. She didn’t know if she was allowed to want that.
Physicians’ own understandable feelings sometimes delay these discussions. Abby Rosenberg, a pediatric oncologist at Boston Children’s Hospital, has spoken about how physicians sometimes avoid starting distressing conversations because “we love our patients and don’t want to cause them pain or harm,” only to find that this “delay tactic ends up causing more distress down the road.” Many doctors feel a profound sense of guilt and failure when they cannot save a young patient’s life.
Yet age cannot stop the advance of Stage 4 cancer or change the fact that, at some point, treatment no longer works. Merely acknowledging that my patient was dying felt transgressive. But when an octogenarian is dying, there is often an unspoken—and sometimes spoken—sentiment that they have led a full life, that death is both natural and expected, somehow less devastating and easier to address.
[From the October 2014 issue: Why I hope to die at 75]
But what is a full life? How does anyone know that a young person hasn’t lived fully, or that an older person has? Helping people find that satisfaction requires doctors to ask what that means to their patients. Their answers reflect who they are, what matters to them, and what they will make of their remaining time. These are important conversations to have with every patient: Plenty of people of all ages are still offered aggressive treatment as a matter of course, or end up facing death under circumstances they might not have desired. As the number of younger people with cancer continues to rise, physicians who embrace their duty to have truthful, compassionate conversations with all patients can help each person make choices that reflect their singular humanity.
I, too, struggled to see past my patient’s age. It was simpler to talk about mixtapes we’d made in high school than the reality of her illness. But as she became sicker, I understood that avoiding that reality was protecting only me, and that my silence could deprive her of moments for grace with her family. Doctoring well required learning the difference between my distress and my patient’s, how focusing on my emotions limited my ability to understand hers.
Knowing how to start a conversation about death with someone in their 20s or 30s can be difficult. Voicing My Choices, an advance-care-planning guide developed for young patients, offers gentle questions that may be useful in early discussions. In addition to posing routine questions about treatment choices and identifying a surrogate decision maker, the document prompts a health-care provider to ask how a person prefers to be comforted, how they would like to be supported when feeling lonely, how they may wish to be remembered, what they want to be forgiven for or forgive others for. These questions illuminate who a patient is and what they value—information that can shape their choices regardless of their age or diagnosis. Understanding the person who is making decisions helps families and physicians find greater peace in accepting that person’s choices, whether they opt for the most aggressive medical treatments until they die or interventions that minimize their suffering.
[Read: Where end-of-life care falls short]
When her oncologist and I met with my patient next, she demanded to know what the point of more treatment was. Whatever choice she made, her oncologist told her, she probably had weeks to live. Her face relaxed. Just like my patient from Boston, she seemed relieved to hear aloud what at some level she already knew. She didn’t want more treatment, and she and her family, craving privacy, weren’t emotionally prepared for her to enter home hospice, which would bring medical professionals through their doors regularly. She opted, for the moment, only to continue medication to ease her nausea and pain; she’d come back to hospital for any other needs.
Before she left, she shared with me what she was looking forward to. Lemonade, even if she vomited. Sleeping in her own bed. Searching for stars outside her window with her son, even if, amid the winter’s haze, they saw just a few.