WHEN JENNIFER ELLIOTT’S ONCOLOGIST CALLED her in the fall of 2019 to tell her that she had metastatic breast cancer, she was in the graduate student lounge at Rutgers University in New Brunswick, New Jersey. Elliott was a music teacher when she was initially diagnosed with early-stage breast cancer in 2014. But her passion for patient advocacy had brought her to Rutgers for a master’s degree in public policy. As a graduate student, she focused her research on end-of-life decision making and the financial toxicity of cancer care.
So when Elliott learned she had advanced cancer, she felt comfortable asking her care team a lot of questions. She asked her oncologist about the side effects of her treatments and what might happen if the cancer didn’t respond to treatment. “I know how to read between the lines of what people are telling me. I know the euphemisms,” she says. “I can call them out on it. And I do.” Now, three years since her metastatic cancer diagnosis, she receives chemotherapy treatment over two weeks, with one week off in between, and continues to talk with her doctors to gauge how treatment impacts her day-to-day life. She’s particularly focused on how treatments affect her cognition. “It’s almost like a risk analysis,” she says. “OK, [the treatment] is taking this much from me. What are your thoughts on how long [the response] will last, or how long I will last?”
Elliott admits that the openness and frequency of her conversations with her doctors is likely not the norm. As part of quality care initiatives, health care providers are encouraged to openly facilitate discussions about end-of-life care; to explore their patients’ values, treatment goals and wishes for medical interventions; and to stress the importance of choosing a person who can make health care decisions on their behalf. These conversations are supposed to be part of an ongoing dialogue throughout cancer treatment, but research shows they don’t happen very often, even in advanced care settings. In a study published June 10, 2021, in JAMA Network Open, for example, researchers reviewed audio-recorded physician encounters with people whose physicians would not be surprised if they died or were admitted to intensive care within one year. Of 423 patient encounters, only 21, just 5%, included end-of-life discussions.
The Prospect of Hope?
Doctors may be reluctant to discuss aspects of end-of-life care, including questions on whether to stop treatment or preferences for lifesaving measures, for fear they will be taking away hope from the patient, says Michael Cohen, a gynecologic oncologist at Albany Medical Center in New York. “Oncologists in particular are worried about, ‘If I talk about end of life, are they going to think that I’m giving up?’”
Patients and family members may also share similar fears. In some cases, a person with cancer might not want to disappoint their family by deviating from an aggressive cancer treatment plan. And loved ones may feel that exploring a patient’s treatment preferences for end-of-life care, as well as discussions about finances and life insurance, may seem unsupportive.
Coming to Terms With End-of-Life Discussions
Know what terms will be important when planning end-of-life care.
Some terms used in end-of-life discussions can be confusing, says Kate DeBartolo at The Conversation Project, who notes the terms may vary even from state to state. For example, the person you choose to make medical decisions on your behalf may be called a health care proxy or a surrogate.
DeBartolo encourages patients to ask health care providers to explain any unfamiliar terms—which could be a way to start a conversation about goals of care.
Advance directive: A legal document that communicates a person’s wishes for medical treatment should they not be able to make these decisions for themselves. Types of advance directives may include information about who is authorized to make medical decisions on your behalf. Depending on where you live and your preferences, an advance directive might include a living will or a do-not-resuscitate order. The National Hospice and Palliative Care Organization has more information on advance directives and forms, including downloadable instructions for each state.
Hospice: Hospice care focuses on improving quality of life for people with terminal disease, typically with six months or less to live, and for their caregivers. People in hospice receive comfort care and are no longer receiving treatments directed at their cancer; those in hospice can also decide to come off hospice and resume active cancer treatment.
Palliative care: Palliative care supports people’s quality of life at any stage of their disease, whether or not they are still receiving cancer treatment. Palliative care may include symptom management, nutrition counseling, psychological or spiritual support, and financial advising.
Still, talking about the realities of end-stage cancer can provide a framework for patients and physicians to make treatment decisions. These conversations, although typically considered a component of end-of-life care, should be a part of treatment for any serious disease, says Michael Rabow, a palliative care physician at the University of California, San Francisco. But these conversations tend to happen later, if at all. “We shouldn’t have to wait until we are dying to focus on quality of life,” Rabow says. No matter what stage of cancer, paying attention to what’s most important can bring an infusion of hope, which can allow patients to have more room for personal growth, enjoying family or even reconciling relationships, he says.
In a study published in the February 2021 JCO Oncology Practice, Cohen and colleagues surveyed 672 people with advanced solid tumors. Twenty percent of these people reported having conversations with their health care providers and families about end-of-life planning. Patients who had these conversations, completed an advance directive or chose a surrogate decision maker were not any less hopeful than those who didn’t have these measures in place.
However, given the discomfort many feel when discussing death, patients should feel emboldened to ask questions, Cohen stresses. “It’s OK for patients to take initiative to ask their providers and be the one to lead the conversation,” he says. “If you have questions, it’s OK to ask. You’re not going to be seen as giving up hope, either.”
Breaking the Ice
Launching into an end-of-life conversation can feel intimidating, says Susan Leighton. “It’s a conversation we’re all going to have at some point in time, and it’s the one conversation that none of us are prepared for,” says Leighton, who lives in Huntsville, Alabama, and was diagnosed with stage IIIC ovarian cancer in 1997 and stage I breast cancer in 2013. Leighton is the national director of the Ovarian Cancer Research Alliance’s Survivors Teaching Students program, which sends ovarian cancer survivors and caregivers to medical schools to share information and personal anecdotes about the disease. At the end of their sessions, the doctors-in-training almost always ask volunteers for tips on how to approach end-of-life discussions with cancer patients. She and her team have no formula—but they often ask the students to consider how they might want to be told that their time is running out. The volunteers also stress qualities that matter to patients, like honesty and compassion, in having this discussion.
Leighton remembers one young woman with metastatic disease who struggled to tell her doctor that she wanted to stop aggressive treatment. “I told her, ‘Don’t make an appointment to see your doctor for an exam. Make an appointment for a conversation,’” Leighton says. She added that doctors are generally open to the conversations, and you can mention this to doctors or the front office staff when scheduling the meeting. Patients who need help in guiding these conversations might get tips from local cancer advocacy organizations prior to the appointment or enlist a hospital social worker or a trusted family member or friend to come to the appointment.
Researchers are also working with doctors to help them be better prepared for talking about their patients’ conditions. Holly Prigerson, a psychiatric epidemiologist who co-directs Weill Cornell Medicine’s Center for Research on End-of-Life Care in New York City, says one challenge can be that patients and their families often have little information about their prognoses. “I think it’s very challenging [for doctors] to give people bad news,” she says. Prigerson and her colleagues have developed a method to teach health care providers to deliver the main message clearly, stressing, for example, how to relay when patients may have months—not years—to live, instead of giving them survival percentages or tumor growth rates. The approach, called Oncolo-GIST, will soon be part of a multi-center clinical trial and expand to include hematology. Early analysis of the program suggests that patients who meet with doctors who received the hour-long training are more likely to understand that their cancer is not curable, Prigerson says.
What Matters to You
Some organizations have tools for smoothing the path for end-of-life conversations, both with health care providers and family and friends. The Conversation Project, an initiative of the nonprofit Institute for Healthcare Improvement, offers end-of-life conversation prompts and materials in English, Spanish and Chinese. Among the materials is a workbook for patients with serious illnesses, which offers prompts for determining each person’s unique values in the context of treatment. The prompts incorporate questions that help people consider their best days and their difficult days, along with goals such as being strong enough to walk a dog each day or attending an important event, such as a family wedding. The workbook also has several questions specifically about health care choices, including wishes about dying in a hospital versus at home.
Figuring out what a person values can help shape the decisions they make in the future, says Kate DeBartolo, senior director of The Conversation Project. She adds that these decisions may change as people clarify their goals, or as new situations, treatments or challenges arise. A person considering hospice, which provides care near the end of life after a patient has stopped treatment to cure the disease, may initially prefer to receive this care at home. But changing financial or family circumstances could shift the focus to receiving this care at a hospice center.
Let’s Get Talking
Ways to start a conversation about end-of-life care.
The Conversation Project is an initiative that offers a range of questions to facilitate discussions with people about their wishes through the end of life. “There’s no right or wrong answer,” says Kate DeBartolo, senior director of The Conversation Project. “It’s just helping figure out where you stand.”
Here are some ideas of where to start:
Defining your values:
- What does a good day look like to you?
- What or who supports you during difficult times?
- What matters to me through the end of my life is ________________.
Starting the conversation:
- Will you help me think about my future?
- Even though I’m OK right now, I’m worried that ________________, and I want to be prepared. Can we talk about some things that matter to me?
- I was thinking about what happened to ________________, and it made me realize ________________.
Reprinted with permission from The Conversation Project.
Before she was diagnosed with breast cancer, Elliott cared for her husband at home while he was on hospice in 2010. She was able to hire an additional health aide and to take time off work—and the experience was still an enormous challenge. “I think it can be more than families realize it is,” she says, “because it definitely was for me.”
When Leighton was diagnosed with ovarian cancer, she says she let her doctor know her short-term goals. “I wanted to see my daughter graduate from college in four years,” she recalls. As she outlived her initial prognosis, she has been able to set new goals for herself, including spoiling her grandchildren, raising a rescue dog and starting to write a book.
Sharing these wishes with others can also help those close to you. For Elliott, who has metastatic breast cancer, this means discussing with her grown children that her chemotherapy treatments will continue indefinitely, “and if something changes, we’ll make a decision then,” so they know she will communicate any changes with them when the time comes.
DeBartolo suggests these conversations can be organic and interspersed into routines in small steps. Sometimes, an email to family members telling them who you have chosen to be your health care proxy is enough to start. “The more we can normalize these conversations, the less intimidating they can be,” she says.
Following Your Values Brings Benefits
A growing effort to integrate palliative care early in treatment can also help to make these conversations more matter of course. Palliative care focuses on improving quality of life by helping patients and their caregivers manage symptoms and side effects, as well as helping people work through emotional, financial and other challenges. While hospice care falls under the wider sphere of palliative care, anyone with a serious illness like cancer can receive palliative care at any stage of their treatment, Rabow says. “We are connecting to what the need is, rather than to what the prognosis is,” he says.
Symptom management, well-being and treatment should all go hand-in-hand in delivering quality care. “We’ve had this false dichotomy, which is that there’s a dichotomy between quality of life and quantity of life,” Rabow says. In fact, both are possible. For example, one study of people with lung cancer suggests early initiation of palliative care can actually help people live longer.
Palliative care, which incorporates symptom management and mental health, helps patients with serious illness examine their own goals and how treatment decisions might impact them. “For most people, there are things that make life worth living,” Rabow says. “And if you are in the process of making decisions about treatment, it’s perfectly reasonable to think, ‘Will this treatment allow me to have a life that is valuable to me?’”
For Elliott, who now has a master’s degree from Rutgers, her current goals include having enough mental capacity and stamina to pursue her research in health care policy, which she hopes will broaden access to palliative and hospice care. “My brain has to work, and I have to have energy for my brain to work three or four hours at a time,” she says. And as her needs and goals change, she is prepared to keep talking with her health care providers and loved ones. “If something else is coming down the line that’s going to influence quality of life, we’re going to have a different conversation.”
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