Eighty percent of people say that if they were struggling with a serious illness, they would want to speak with their physician about end-of-life care. Yet only 7% end up doing so, according to a survey by the California Health Care Foundation. As a result, more than half of people who lose a loved one say that their end-of-life wishes were not followed.
“It’s really important to have this conversation with your doctor, to make sure that you don’t end up with a treatment that you would not have wanted or to die in a way that you would not have chosen,” says Harriet Warshaw, former executive director of The Conversation Project.
“It’s really important to have this conversation with your doctor, to make sure that you don’t end up with a treatment that you would not have wanted or to die in a way that you would not have chosen.”
HARRIET WARSHAW, FORMER EXECUTIVE DIRECTOR, THE CONVERSATION PROJECT
“Doctors used to give three reasons for not having these discussions: no training, no time and no reimbursement from insurance,” Warshaw says. But this changed at the end of 2015, when the Centers for Medicare & Medicaid Services (CMS) approved payment for end-of-life counseling as part of its 2016 Medicare physician fee schedule. “Now we’re starting to see more training among physicians, as more and more professional societies make it part of their educational offerings,” explains Warshaw. “Hopefully, over the next decade, physicians will begin bringing up these conversations routinely, just as they ask us about smoking or exercise.”
In the meantime, here are her suggestions to get the discussion started, whether you’re thinking about your own end-of-life care or that of someone you care about.
Carve out time for it
If you’re in the office to get checked for a cold or back pain, don’t expect that your doctor will have time to sit and discuss end-of-life issues. “This is a more complex conversation worthy of its own visit,” notes Warshaw. While this is particularly important if you or a loved one suffer from a chronic or terminal illness, if someone is over age 65, you shouldn’t put it off even if you’re in good health. “Anyone’s health status can change suddenly,” says Warshaw.
Familiarize yourself with some terms
Your doctor may mention certain topics in your conversation, so it’s good to know what these are and what your thoughts are on them. These include:
- Advance care planning. Making plans now for the medical care you want in case of an emergency or serious illness.
- Palliative care. Care to help symptom relief during a chronic or terminal illness.
- Hospice. Comfort care for people with less than six months to live.
- Shared decision making. A process where you and your doctor work together to make decisions about your medical care.
You should also think about things like whether you’d want to be resuscitated if your heart stopped, if you’d want things like breathing or feeding tubes if you became incapacitated and under what circumstances you’d want aggressive care versus comfort care.
Bring someone with you
This will be an intense conversation, so it’s a good idea to have a family member or friend with you to take notes. Ideally, this person will be your health care proxy, or the person you’ve chosen to make medical decisions for you if you can’t. You should also make sure that your doctor or medical team has documented your wishes in your medical record, perhaps in a POLST (Physician Orders for Life-Sustaining Treatment) or MOLST (Medical Orders for Life-Sustaining Treatment) form if it’s appropriate and available in your state. This way, it’s clear that both your medical team and family know exactly what you will want at the end of your life if you can’t communicate your wishes.
Ask a lot of questions
This is particularly important if you are dealing with a terminal illness. A few questions to ask:
- How will your life look six months from now, a year from now, five years from now?
- How will your condition affect your ability to function independently?
- What can you expect if you decide to pursue treatment?
- What can you expect if you decide to do nothing?
- What are possible health changes to be prepared for?
It’s fine to ask your doctor to slow down and/or explain things in a different way. You also don’t need to decide anything right away, stresses Warshaw. You may want to talk things over with your loved ones, and revisit the issue in another appointment in a couple weeks.
Don’t be shy about seeking a second opinion
If your doctor doesn’t agree with your end-of-life choices, ask them why. Maybe they think you can still benefit from aggressive therapy, even if you don’t — or vice versa. Remember, at the end of the day, you are the expert on your desired quality of life, says Warshaw. If you feel that your doctor doesn’t support that, it’s worth getting a second opinion. The same is true if two doctors on your medical team disagree. Get them into the same room to talk it out. Sure, it might be a little uncomfortable, but the stakes are high: “This is your life,” says Warshaw.
“This is your life.”
HARRIET WARSHAW, FORMER EXECUTIVE DIRECTOR, THE CONVERSATION PROJECT
Insist on having this discussion
Sometimes, health care providers don’t want to talk about end-of-life care, especially if you’re healthy or managing an illness well. “It’s your right to talk about this, whenever you want,” says Warshaw. If they’re rushed for time, insist on scheduling another appointment. If they are still resistant, consider finding another physician. This is too important an issue to ignore.
