Doctors’ silence on the death of Millennials

A few years ago, in my work as a palliative care physician, I cared for a man in his sixties who had been largely healthy before he was diagnosed with stomach cancer. After three different treatments had failed, his oncologist and I told him that a fourth treatment might give him a few weeks at best. “Send me back to Boston,” he said immediately. He wanted to feel the Atlantic, to see his childhood home again. He did, and died a week later.

My patient died the way he wanted: comfortable, fully informed about his worsening cancer, and able to decide where he wanted to die, who he wanted to be with. It’s the kind of proverbial “good death” our medical system is slowly learning to seek, but not necessarily for younger people.

In the hospital room next to this man was a young mother who, like me, was in her thirties. We bonded over our love of ’90s music and the Southern California beaches where we’d built sandcastles as kids 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 her manage her pain and nausea. She would put her hands on her protruding belly, swollen with fluid and gas because the cancer was blocking her intestines. She couldn’t eat, so medications and liquid nutrition flowed through a large catheter threaded through a blood vessel in her arm to her heart.

Like her older neighbor, she had undergone many different treatments, all of which had failed. Yet when she asked her oncologist how much time the next treatment might buy her, I remember him telling her that he didn’t have a crystal ball, but he encouraged her to stay positive: she had survived other difficult treatments and had promising options. Her husband reminded her that she still had a long time to live.

Conversations like this are happening every day: An unprecedented number of young Americans are dying from cancers typically seen in older people, with diagnoses rising most rapidly among those in their 30s. Millennials born in 1990, 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 cancer at later stages and may have more aggressive tumors than older adults. In my work with these patients, I’ve seen how their age influences how their medical teams and families perceive them, the treatment choices we hope they will make, and the silence we keep around their mortality. Their youth can be used as a justification for pursuing physically devastating and sometimes ineffective treatments; the unspoken assumption is that they want to prolong their lives as long as possible, no matter how good they may be.

My patient knew her cancer was incurable, and that each time one treatment stopped working, the next one would likely be harder and less effective. Although she had once found comfort in the possibility of additional treatment, she now feared it would make it harder to survive each day. Yet even as her cancer progressed, her doctors and family were reluctant to talk to her about the inevitability of her death and what she wanted the rest of her life to look like.

Young adults face unique stressors when they are diagnosed with cancer: They may worry about whether they will be able to have children or watch them grow up. They may lack stable health insurance or be unable to complete their education. And they must cope with sudden uncertainty and grief while watching their peers advance in their jobs and relationships. Doctors’ efforts to be sensitive to this constellation of losses by delaying emotionally charged conversations may be well-intentioned, but this instinct harms young patients in another way, by depriving them of information and choices that are more readily available to older patients.

And the young patients to want Doctors can provide them with information about their prognosis and give them the opportunity to share what care they would like to receive at the end of their lives. Without these discussions, many people experience situations they would have preferred to avoid, such as dying in the intensive care unit rather than at home, and doctors may overtreat younger people with harsher and sometimes unproven treatment strategies that are not as readily offered to older patients. These treatments help even the youngest survive a little longer.

My patient’s oncologist believed that her healthy body and organs could withstand toxic therapies; the question of whether she could tolerate, much less enjoy, the life she was living was a distant second. Just because most of her organs were still functioning did not mean she wanted additional treatment or that treatment would help her live the life she wanted.

Yet her family wanted her to have every chance possible, even though she had trouble playing with her son, who often saw her sick or asleep. “A chance for what?” she asked me, pointing to her bruised arms and a trash can filled with vomit. She longed for freedom, away from hospitals and chemotherapy rooms. She didn’t know if she had the right to wish for it.

Doctors themselves sometimes tend to delay these discussions, which is understandable. Abby Rosenberg, a pediatric oncologist at Boston Children’s Hospital, explains that doctors sometimes avoid having difficult conversations because they “love their patients and don’t want to hurt them or cause them harm,” only to realize that this “delaying tactic ends up causing even more distress later.” Many doctors feel a deep sense of guilt and failure when they can’t save a young patient’s life.

But age can’t stop the progression of stage 4 cancer or change the fact that at some point, treatment stops working. Even acknowledging that my patient was dying felt transgressive. But when an octogenarian is dying, there is often an unspoken—and sometimes expressed—sense that he or she has lived a full life, that death is both natural and expected, somehow less devastating and easier to deal with.

But what is a full life? How do you know if a young person hasn’t lived a full life or if an older person has? To help people find that satisfaction, doctors must ask themselves what that means to their patients. Their answers reflect who they are, what matters to them, and what they will do with the time they have left. These are important conversations to have with every patient: Many people of all ages are still routinely offered aggressive treatments or end up facing death in circumstances they may not have wanted. As the number of young people diagnosed with cancer continues to rise, doctors who embrace their duty to have honest, compassionate conversations with all patients can help each person make choices that reflect their unique humanity.

I, too, had a hard time seeing past my patient’s age. It was easier to talk about the compilations we had made in high school than the reality of her illness. But as her illness worsened, I realized that avoiding this reality only protected me, and that my silence could deprive her of moments of grace with her family. To care well, I had to learn to distinguish between my distress and my patient’s, how focusing on my emotions limited my ability to understand hers.

It can be difficult to know how to begin a conversation about death with someone in their 20s or 30s. The advance care planning guide, “Expressing My Choices,” designed for younger patients, offers gentle questions that can be helpful in early discussions. In addition to asking routine questions about treatment choices and identifying a surrogate decision maker, the document prompts the health care professional to ask the person how they prefer to be comforted, how they would like to be supported when they are lonely, how they would like to be remembered, and what they would like to be forgiven for or forgive others. These questions shed light on who the patient is and what they value—information that can influence their choices, regardless of their age or diagnosis. Understanding the person making the decisions helps families and physicians more confidently accept the person’s choices, whether they opt for the most aggressive medical treatments until death or for interventions that minimize suffering.

When her oncologist and I met with my patient again, she demanded to know what further treatment was for. Whatever she chose, her oncologist told her, she likely had weeks to live. Her face relaxed. Like my Boston patient, she seemed relieved to hear out loud what she already knew on some level. She did not want further treatment, and she and her family, eager for privacy, were emotionally unprepared for her to be admitted to a home hospice, which would regularly draw health care professionals. She chose, for now, to continue taking medications only to relieve her nausea and pain; she would return to the hospital for any further needs.

Before she left, she told me what she was looking forward to. Lemonade, even though she was throwing up. Sleeping in her own bed. Looking for stars outside her window with her son, even though, in the winter mist, they could only see a few.