“I do not want to be a burden on my family… I would prefer to be placed in a nursing home or whatever kind of facility and have my family come visit.”
“I do not want to be on a breathing machine. I do not want to be artificially fed. I would like to be pain free. I would like to be at home. Do I want hospice care? Absolutely.”
“I want to die gently and naturally, and I want to die at home with hospice and of course my family.”
These are from a few of the thousands of letters that were written by participants in The Letter Project, developed by researchers at Stanford University to give people a simple way to express their end-of-life preferences.
Too Few Talking About Death
The project addresses a critical need. According to the 2014 Institute of Medicine report Dying in America—Improving Quality and Honoring Individual Preferences Near the End of Life, 70 percent of older adults are too ill to make decisions about their treatment when they are nearing the end of their lives.
“Furthermore, the majority of these patients will receive acute hospital care from physicians who do not know them,” the study found.
Given that, the importance of having an easily accessible written record of patient wishes is key to improving the quality of end-of-life care. Yet despite decades of public and physician education and outreach, most Americans still do not have advance health directives and of those who do, the documents “rarely affect treatment decisions,” the report noted.
Advance directives, which vary slightly by state, include a living will, specifying the treatment you want at the end of life, and a health care power of attorney, designating who will make decisions for you if you are unable to do so. They may also include a physician-signed “do not resuscitate” or “allow natural death” and other orders you request.
‘Not What They Want’
A July study in the journal Health Affairs found that only 37 percent of U.S. adults had an advance directive. Without one, people are more vulnerable to ending their lives in institutional settings, attached to machines.
“Many patients tell me this is not what they want,” says Dr. V.J. Periyakoil, a geriatrician and palliative care specialist who founded The Letter Project. “There’s a high emotional toll and a high fiscal toll on the family. If it’s going to help your loved one, fine, but sometimes the only one it’s helping is the hospital who is charging really high fees.”
She adds that “patients from ethnic minorities are more likely to be subjected to invasive treatments.”
Enlightening End-of-Life Survey Results
Beginning in 2012, Periyakoil and her colleagues surveyed doctors and patients to learn what the barriers are to completing advance directives. To begin, they asked physicians what they would want at the end of their own lives. Nearly nine out of 10 said they would not want their life prolonged if they were terminally ill.
In another study, the doctors cited language barriers, lack of medical literacy on the patient’s part and cultural and religious differences that made the physician uncomfortable discussing end-of-life issues.
For their part, patients agreed that they had difficulty discussing such concerns with their doctors. “In our study, 100 percent of our patients thought it was important to talk about end-of-life wishes,” says Periyakoil. “But then something breaks down.”
Patients felt that doctors didn’t have the time or willingness to listen to them. Many also said they were reluctant to sign the advance directive form because they did not fully understand it.
“An African-American focus group participant said that words in the advance directive form such as ‘withhold’ and ‘withdraw’ treatment were scary,” says Periyakoil. The participant said, “That allows you to withhold treatment from us, and history has not been kind to our culture. Our lifespan is shorter, and now you’re asking me to sign off on our death statement.”
Reflecting Diverse Groups
To overcome such concerns, the researchers consulted with a patient-family advisory council and patients themselves to design a tool that uses language acceptable to everyone. Called the “What Matters Most” letter, it is written at a fifth-grade level and the template is available in English, Spanish, Tagalog, Vietnamese, Hindi, Russian, Chinese and Urdu.
Patients are invited to complete two letters. One is directed toward the doctor and includes space for the person to write what he or she hopes to achieve in the future (attend a granddaughter’s graduation, celebrate a 50th anniversary); what matters most to them (being active in their church, gardening, spending time with grandchildren) and questions regarding how their family communicates and makes medical decisions.
The letter avoids words like “withhold treatment,” instead using two simple checklists: I do NOT want (to be on a breathing machine, artificial liquid feeding, dialysis) and I DO want (to be pain-free, to die at home).
A second letter is meant for friends and family and prompts letter writers to reflect on important life issues such as forgiveness and gratitude.
Letter Favored Over Traditional Form
A randomized clinical trial looked at how participants felt about writing the What Matters Most letter versus completing a traditional advance directive form. Participants reported that the letter was easier to understand, better reflected what was important to them and helped them think about and convey which treatments they wanted at the end of life, compared to the traditional advanced directive form.
According to Periyakoil, the letter is a legal document if signed by two witnesses. But just as important as its legality, she stresses, is getting physicians to pay attention to it. Her hope is that they will be more likely to heed a document that is compelling and written in the patient’s own words.
The American Medical Association has developed an online training module to encourage doctors to use the letter with their patients. The letter includes a barcode that makes it easy to upload into the patient’s electronic medical record. Both letters are also available to individuals free online and as an app. “We get requests from all over the world,” says Periyakoil.
Doctor: Patient Gained More Control
Michael Taylor Richardson, a third-year medical student at Stanford, used the doctor letter in a study during his rotation on a bone marrow transplant unit. The team interviewed more than 80 patients and their caregivers. Each patient and caregiver was given a copy of the letter to be completed privately. “It gives them more control over when and how they want to answer,” he says. “They can share whenever they are comfortable.”
The team then guided a family conversation. After hearing directly what the patient’s preferences were, the caregivers were more inclined to carry out those wishes, says Richardson. Researchers hope to follow the patients over time, to see if their wishes are honored, he added.
Without the letter, he says, “I don’t know how I would have begun to start the conversation.”
Although almost all the patients wanted to complete the letter, some caregivers were not comfortable talking about their loved one’s death. “I was surprised how often the caregiver was in denial, like if they talked about it, it would jinx the whole process,” says Richardson.
He was also surprised by how little the patients wanted in the way of medical treatment. “A lot of people were interested in doing less than the medical team would do by default,” Richardson says. “The main lesson for me was that it’s super important to have the conversation with the patient and the family member.”
This article was written with the support of a journalism fellowship from New America Media, the Gerontological Society of America and AARP.