Stanford palliative care expert V.J. Periyakoil , MD, tells the story of a recent patient in his 60s who was dying of a brain tumor and whose wife was desperate to keep him alive. A gifted cook, the wife had always shown her love for her husband by serving him well-prepared meals.
As his tumor progressed, he became confused and developed swallowing difficulties. He became unable to eat, so she asked that he be fitted with a feeding tube that would nourish him and allow her to spend more time with him, even though he had indicated he did not want to be tube-fed.
The tube, inserted in the nose and down the esophagus into the stomach, soon began to cause complications, sucking material from the patient’s stomach into his lungs, where it threatened to cause a fatal respiratory infection. The man was uncomfortable and tried to pull it out; the wife designed a beautiful and innovative restraint that left his hands free but prevented him from removing the feeding tube.
Periyakoil gently refused to restrain the dying man and counseled the wife to let clinicians withdraw the tube. The wife ultimately relented, when reminded that her husband was a proud and dignified man who had told Periyakoil he wanted to die gently. He died peacefully that night.
It’s a typical end-of-life tale, in which loving, well-intentioned family members opt for ineffective and burdensome treatments, rather than allow loved ones to pass away peacefully, as many patients say they would prefer.
“I tell people that proxy decision-making is one situation where those who love you can hurt you,” says Periyakoil, a clinical associate professor of medicine and director of the Stanford Palliative Care Education & Training Program.
“They do it out of love and misguided good intent. Because out of love or duty, they may end up doing things that will harm you. We see this all the time. Your doctors won’t be able to help you in a situation like this unless you speak your mind and document your wishes.”
To help patients do just that, last year Periyakoil launched the Stanford Letter Project, designed to encourage people at all stages of life to express their end-of-life wishes to their physicians and loved ones. The effort gives patients a voice in how their last days are lived — one way that Stanford is elevating the doctor-patient relationship as part of its focus on precision health.
The Letter Project provides individuals with templates in which they can check boxes — for example, “I do not want to be on a breathing machine” — and answer simple questions to create their letters, which they can send to their physicians.
Periyakoil also encourages individuals to share their letters with family members as an entrée to these difficult conversations.
“The goal here is to empower patients and families to have these conversations within their family, at their own leisure when they are most comfortable,” Periyakoil says. “What we find from patients is that one of the barriers is their own family members, because it’s such an awkward, uncomfortable topic.”
In some cultures, for instance, death is a taboo subject, and people feel that they are invoking death by simply talking about it, she says. Others feel that end-of-life issues are the province of the divine. “For those, it seems presumptuous of humans to go beyond their scope of practice to divine territory,” she says.
Every year, some 2.6 million Americans face death, but data suggest that before they pass on, most never have a heart-to-heart talk with their doctors about how they want to finish out their days. The result is untold suffering, as doctors fall back on aggressive, costly and sometimes harmful treatments that may lead to an end that lacks dignity and comfort, she says.
“Our research has shown that most doctors are uncomfortable conducting end-of-life discussions with their patients,” she says. “We need a role reversal in the conversation on dying. Instead of holding their breath and waiting for their doctors to initiate this conversation, patients need to lead this conversation. But most patients do not know how to do this or what to ask for. So we decided we needed to come up with a format that patients and families can use.”
‘It’s about how people want to live’
The initiative differs from physician-assisted death, which in the United States is available to a small number of terminally ill patients in certain states who have followed a detailed legal process to obtain medication to help them die. The Letter Project, in contrast, focuses on how they want to experience their last days and helps them make the most of the time they have left.
“Physician-assisted suicide is about not living anymore,” Periyakoil says, “whereas this, the Letter Project, is about what matters most to each patient. It is not about death, but about life and how people want to live.”
In developing the project, Periyakoil says she was motivated in part by the cost of end-of-life care, which consumes a major portion of the nation’s health-care budget. Some 20 percent of Medicare dollars are spent in the last year of life, with half of Medicare recipients visiting an emergency department and one in three admitted to an intensive care unit during that final year; one in five have surgery in the last month of their lives, studies show. These interventions are not only costly but may interfere with a person’s ability to function and enjoy life, and in some cases, may hasten the end, Periyakoil says.
That stands in stark contrast with what polls show people want at the end of their lives: to die gently and comfortably, surrounded by family members. Yet many fail to express their wishes to doctors or family members. In California, only 13 percent of adults have completed an advance directive, a legal document in which people can spell out their end-of-life decisions ahead of time.
And doctors say they are hesitant to broach the topic with their patients. In a study published in April 2015 in PLOS ONE, Periyakoil found that more than 99 percent of the 1,040 physicians queried at Stanford Health Care and the Veterans Affairs Palo Alto Health Care System said they were reluctant to start these end-of-life conversations with patients because of cultural, religious, ethnic, language or other barriers.
With this huge communications gap, decisions about end-of-life care typically fall to physicians, whose training and instinct is to keep patients alive no matter what through all-out interventions. Yet 88 percent of physicians would not choose this high-intensity approach for themselves, Periyakoil’s research shows.
As physicians, she says, “We are trained, we are rewarded, for doing. We are not trained to communicate, and we are not trained to stand by and support. So everything in our medical genome is geared toward doing more and more. … If you do one more procedure or one more thing, you are keeping them alive longer, because your goal is to save lives.”
Moreover, family members who serve as a proxy for incapacitated patients often opt for end-of-life heroics. Periyakoil tells the story of one patient who had suffered a stroke. He later went into respiratory failure, and doctors told his wife he needed an urgent tracheostomy, a tube implanted through the neck into the throat to create an airway. She agreed to the procedure.
“She felt terribly guilty because the decision made him live a life of misery for 10 more years,” Periyakoil says. “She told me, ‘If I could turn back time and choose again, I would never let the doctor cut open a hole in my husband’s throat. After that, he suffered so much. When someone’s life is ending, we should let them go through that period as easily as possible.’”
In helping families assuage their guilt, David Magnus, PhD, director of the Stanford Center for Biomedical Ethics, says he counsels them to imagine what course their loved one would choose — not to make the judgment for them.
“We frame the conversation by asking, ‘What would your loved one say if they were here?’ We do it to relieve the burden on the family of making this decision and make them feel like it is their loved one making the decision,” he says. Unfortunately, he says, families don’t really know what patients want, with studies of paired responses between patients and designated decision-makers showing that the decision-makers “get it right” only two-thirds of the time — all the more reason for individuals to make their desires clear.
Periyakoil says many people are galvanized to write a letter following the death of a family member, which prompts them to consider their own wishes and preferences.
That was true for Anthony Milki, a 20-year-old Stanford junior, who was motivated to write his letter after his beloved cousin, just 22, died suddenly in 2014 of flu-related complications.
“I think her dying made me get to another level of thinking about it — thinking about what I would want,” he says. He understands that families will reach for high-tech interventions at the very end, clinging to the faintest hope of a miracle and fearful of letting go.
“I don’t blame families, but it’s objectively harmful. I would not want that for myself,” he says.
Periyakoil says the Letter Project already has amassed more than 2,000 letters from individuals like Milki who have consented to be included in her research and have their letters shared. Many others across the country also have written letters as other practitioners begin to adopt the model, she says.
She recently won an innovators’ award from the American Medical Association, which recognized the project as an “excellent example of a transformational medical practice solution.” She says she plans to work with the AMA to help expand use of the letter. She believes the new Medicare policy of reimbursing physicians for time they spend discussing end-of-life decisions with families will spur more people to engage in the process.
“When the system gives you money to do something, it means it’s something that the system values,” Periyakoil says.
Her goal is to develop a bank of some 20,000 to 25,000 sample letters of people from all ages and backgrounds, as a kind of crowdsourcing of ideas for future letter writers. Individuals can choose to write their letters at any time in their lives, she says, though she encourages them to consider it when they have reached voting age.
“I tell all my patients who are eligible to vote to weigh in on your own fate before you weigh in on the fate of the nation,” she says.
Sample letters can be viewed at the Letter Project’s website. The Stanford Letter Project mobile app is available at the iTunes store and at Google Play Store. An app that will convert the letter into a pre-filled advance directive is under development.
How it works
The Letter Project is designed to help all adults think about the end-of-life issues they — and their families — may confront in the future.
A letter template on the project’s website includes a series of questions about what matters most to individuals; their important future milestones, values and preferences for care; and who they want making medical decisions for them when they are unable or unwilling to make decisions for themselves.
For instance, it asks writers to talk about how they handle bad news in the family — whether they are open about issues or want to shield certain family members from troubling information. And it asks them to consider how their family makes medical decisions in general, whether it is a matter of consensus or whether certain individuals hold more sway — information that can be valuable to the patient’s medical team.
Letter writers are prompted to specify whether there are certain interventions they would not want at the end of life, such as breathing machines, artificial feeding tubes, dialysis or hospitalization. Patients also can indicate what they do want — whether it’s to be pain-free, to die at home or at the hospital, to receive their physician’s help in dying gently and naturally, and/or to die with the benefit of hospice care.
Letter writers can specify whether they want their stated intentions to be binding or whether they would allow family members to override their wishes. That is distinct from an advance directive, a legal document in which individuals spell out their end-of-life instructions, which designated decision-makers are required to follow under California law, says David Magnus, PhD, director of Stanford’s Center for Biomedical Ethics.
“People can say in this letter that if there is a conflict, you must do what I say or do what my loved one says. That is really unique and critically important to address,” Magnus says.
Individuals can use the website to email the letter to their physicians or can print it out and mail it to their doctors. Numerous people in the United States have written letters to their doctors in various languages, and a group in the United Kingdom recently began using the Letter Project. The project’s director, clinical associate professor of medicine V.J. Periyakoil, MD, also hopes individuals will use the letters as a springboard for conversations with family members about what matters most to them and how they want to spend the last chapter of their lives.