Facing Mortality: How to Talk to Your Doctor
In his book Being Mortal, writer and surgeon Atul Gawande has a chapter titled “Hard Conversations.” He writes about the extremely difficult, yet ultimately rewarding conversations his father, who was diagnosed with a cancerous tumor, had with his loved ones and with his doctors. The conversations allowed Gawande’s father to make critical decisions about his treatment, and to focus on what mattered the most to him during the last few years of his life.
“These conversations may cover end-of-life topics, but they’re not only about end-of-life,” says Susan Block, chair of the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute. “They really focus around how people want to live, and what their priorities are, what’s important to them in terms of living with a progressive, serious illness.”
But how do you or a loved one talk to your doctor when one of you have fallen seriously ill? How do you prepare yourself? How do you figure out what to say?
In recent years, the rise of palliative care — which helps patients deal with the symptoms, pain and anxieties of serious illness — has helped physicians to better manage such conversations. While the field is growing, only a little more than 1,700 hospitals in the U.S. have a dedicated palliative care team, according to the Center to Advance Palliative Care — meaning that at most health care facilities, patients lack access to specialists in conversations about end-of-life care.
Because there is no rigid structure or checklist for these kinds of discussions, FRONTLINE asked experts in palliative care and organizations dedicated to helping patients have “the conversation” how to go about it. Here is what they told us:
Start the conversation
The first step, which can also be the hardest, is starting the conversation. There is no perfect time to start talking about your wishes, but experts agree that having this conversation with family earlier in your treatment can help improve the quality of your care.
“I think it’s really helpful to start with family. It’s not always possible, but … as much as possible, these conversations should start around the kitchen table,” says Block, a pioneer in the field of palliative care.
When you have the discussion with your family members, experts advise that you start by letting them know what kind of care you would like and what matters most to you. They also suggest you get a better idea of what your loved ones hope for you. At this point, you can also decide on your health care proxy, the person who will advocate for your wishes when it comes to your medical treatment if you are unable to do so by yourself.
Your doctor is unlikely to bring up the topic unless there’s a medical emergency, so experts suggest letting him or her know that you’re ready to discuss it.
“I think one mistake we often make is only having these difficult conversations when something’s going wrong,” says Dr. Jennifer Temel, clinical director of thoracic oncology at Massachusetts General Hospital. “When someone’s feeling terrible, and their family is very stressed that the patient is so sick, that’s really not a time to have a calm and thoughtful conversation about prognosis and end-of-life care goals.”
You can let the doctor’s office know that you would like to talk about your end-of-life wishes when you call to make an appointment. That allows both you and your doctor time to prepare.
You don’t have to fit everything into your first talk with your doctor. “The conversation” is actually more a series of conversations, and it becomes easier once you start.
Understand your situation
Experts say it’s important to understand the “bigger picture” of your medical condition, not just the details of your latest test result, treatment or medication. Getting a sense of where you are in dealing with your illness can give you a better idea of what to prioritize.
“In order to have an effective family meeting [with the doctor], it’s really important to start with where the patient and the family are, and to understand what they understand about where they are in the trajectory of their illness,” Block said.
The Conversation Project, an organization that aims to help people discuss their wishes for end-of-life care, suggests a series of questions in a starter kit designed to help patients talk with their doctors. Questions include: What can I expect from this illness? What is my life going to look like in six months, a year from now, five years from now? What can I expect about my ability to function independently?
Some patients want to know every single detail, while others don’t want all the information about their illness. Experts say that either choice is okay, but understanding your prognosis and what you can expect helps you make the next decision.
What matters most?
At the heart of these conversations is the question: What matters most to you?
Many people say they want to spend more time with their families. For some, it’s important that their treatment allow them to continue working and living independently. Some prefer being treated in the hospital, while others prefer being treated at home. Some may prefer no treatment altogether.
When you talk with your loved ones and your doctor, you should “paint a picture of what matters most to you at the end of you life, because that will frame the kinds of treatment that you and your clinician will work on together,” says Harriet Warshaw, executive director at The Conversation Project.
“The hope is that I’m going to have lots more time, and that even thinking about this is premature,” Block says. “But we all know that life is uncertain, so if things were to get worse, if time were getting short, what are the things that are most important to me as a person? Who do I want to be with? Where do I want to be? How do I want to be using my time?”
The answers to those questions can help a doctor tailor treatments that take your wishes into account. “The goal is to fit the treatments into your life,” Block says, “rather than focusing on the treatments and making your life conform to those.”
Experts also say what matters most to a patient can change over time, which is why it’s important to keep having these conversations over the course of your treatment.
The realities of living with a serious illness from day-to-day can change your life goals. Some people are determined to fight on and try every new treatment and procedure, while others may tire and want to focus on spending time with their loved ones.
Warshaw offers the example of her mother, who successfully treated several bouts of cancer until she was diagnosed with a form of the disease that was harder to treat. Having gone through the process many times, she initially made the decision to let the disease progress. She changed her mind when she realized that she wanted to be there for her grandson’s bar mitzvah. She then started chemotherapy and was able to attend the ceremony.
Express your fears
As important as communicating what matters most is expressing your fears and worries to the doctor, according to experts. That allows them to offer the advice and reassurance that’s appropriate for your situation without overloading you with information.
“I’m always struck by how many patients are intensely worried about pain at the end of their lives, and that’s a natural worry,” Block said. “But I think the fear of pain or the worry about the pain is a form of suffering. We do have treatments for pain that are so good that having sustained bad pain at the end of life is an extremely rare event.”
It is also common to worry about receiving too much or too little care, experts say. Talking it over with your doctor and your health care proxy gives them a better idea of what you would want in case you are unable to decide for yourself.
Discuss limits and trade-offs
As you discuss treatments options with your doctor and your proxy, experts suggest you talk about where to draw the line: If you want to try a treatment that requires you to make frequent hospital visits, if you want to take part in an experimental trial, if you’re willing to try a surgery that may carry risks, or if you want to undergo a procedure that may only extend your life for a short time.
In other words, weigh how much you’re willing to give up or go through in order to extend your life. When you’re discussing a particular treatment, you can ask your doctor how long it will prolong your life and what quality of life you can expect after the treatment.
There’s no correct answer, but discussing your own limits lets your doctor suggest treatments that are right for you and that can help you maintain the quality of life that you want.
“We know that so many procedures now take place in the last two weeks of life, which don’t really extend life or give you additional quality of care,” Warshaw says. Experts see letting your caregivers know where you draw the line as a way of giving you more control over the quality of your life.
Consider whether hospice care is right for you
Unlike palliative care, which can apply to patients dealing with serious but non-terminal illnesses, hospice care is for those with a life expectancy of six months or less. Hospice allows patients to receive treatment at home, although it can also be offered at hospitals, nursing homes and other long-term care facilities.
The word “hospice” can carry a negative connotation, says Block, because it’s often mentioned by doctors as a last resort. As a result, people enter hospice care very late, and sometimes spend only a matter of days in hospice, not receiving its full benefits. A better way to introduce it, she says, is as a care system that allows patients to stay at home, gives them 24/7 access to a nurse, provides support for their family, and provides expert management of their symptoms.
“If you’re getting toward the advanced stages of illness, hospice offers the best quality of care and I don’t think most patients understand that,” Block says. “It’s dramatically better than the care that takes place in nursing homes or takes place in hospitals, according to family members.”
The key to discussing hospice at the right time seems to be good communication all along, and making the decision for yourself on how, where and with whom you want to spend your time.
“People have this amazing and very beautiful capacity to find purpose, meaning and pleasure in life and don’t want to let it go,” Block says, “but then in some cases they get more tired, the treatments get more onerous and they just become emotionally ready for the end.”