End-of-Life Choices: The Hardest Conversation You’ll Have with Your Doctor

There is no perfect time to have “the talk” with your doctor—your wishes for end-of-life care, that is—except for this…It needs to be before you ever need critical medical care. You don’t want to wait until you’re diagnosed with a terminal illness or once a chronic condition takes a turn for the worse and you aren’t thinking clearly…or suffer a stroke or heart attack and can’t speak for yourself.

It’s understandable why you’d put this off. It’s scary to think about getting a life-threatening illness and how you want to face death, much less verbalize this to your health-care provider. But it’s something we should all take time to think about, decide on and communicate so that our wishes can be carried out.

Of course, it’s important to share this information with members of your immediate family so that they know, understand and will help you carry out your wishes, but it’s equally important to let your doctor know so that he or she can document your wishes in your medical record, said J. Randall Curtis, MD, MPH, a pulmonary and critical-care physician at the University of Washington in Seattle.

Recognizing that doctors rarely initiate these conversations—even with patients battling serious illnesses—and that many patients, as a result, don’t get the type of care that matches up to what they want, Dr. Curtis spearheaded a project designed to help patients and doctors more effectively communicate. Here are his suggestions for having this talk with your own doctor…

PLANNING FOR THE TALK WHEN YOU’RE HEALTHY

Step one: If possible, set up a special appointment with your doctor rather than trying to fit this discussion into another visit when time may be limited. Make it clear when you call to schedule this visit that you want to see your doctor, not a member of the office staff or nurse or the physician assistant. Tip: If you’re on Medicare, your doctor can get reimbursed for spending up to 30 minutes on advanced-care planning with you. If you have private health insurance, this visit is unlikely to be covered.

Decide whether you want to go alone or with a loved one. Many people find it helpful to have a second set of eyes and ears.

Step two: Prepare for your conversation by writing down your initial thoughts. You may need your doctor to answer some questions to help you make decisions, so it’s not imperative that you have every situation accounted for in advance.

One big-picture question to consider is whether your priority is quality of life—relieving pain and discomfort—or extending life through treatments, no matter what their side effects. Think about what aspects of your quality of life are most important to you. Is it most important to be independent and care for yourself or to be able to participate in your favorite activities or to recognize family and friends and communicate with them. These are the “goals of care” that you want to make as clear as you can to your doctor. Prepare for Your Care is a step-by-step video-based information site where you can find out more about defining your goals of care and making medical decisions to support those goals.

Know that you have every right to change your wishes in the future as medicine changes, especially if you’re not managing any chronic conditions now. It’s impossible to know what illnesses you may get and what treatments could be available for them. What you communicate now may be more about your philosophy, with specific preferences about treatments coming later should you start to battle an illness.

Step three: At the appointment, get the answers that will inform your decisions. Though the subject matter may feel difficult or awkward to talk about, there’s no reason to be nervous. Your doctor may be the expert on medical care, but you are the expert on what’s important to you, and your doctor should respect that and want to hear your thoughts. (If he doesn’t or makes you uncomfortable with this topic, find another doctor.)

Another point you might want to address with your doctor is who should know the specifics about a medical condition, present or future, besides the loved one who might be with you at this appointment. Do you want the doctor to communicate directly with anyone else, such as your children or a health-care proxy (who could be a child or a spouse or a sibling or anyone of your choosing) who can speak for you if you’re incapacitated?

Step four: After your appointment, create a living will if you haven’t done so already. Our article, “How to Choose the Right Medical Advocate,” details how to do this legally. Send a copy to your doctor and ask that he put it in your medical records. This is a legal document that helps ensure your medical care will be carried out the way you want if you are unable to speak for yourself…and a great way to memorialize what you and your doctor discussed.

Note: You can change your medical care wishes and update your living will as often as you’d like. Just be sure to communicate any changes with your doctor and send an updated document for your medical record.

IF YOU’RE FACING A SERIOUS ILLNESS

Dr. Curtis’s research found that doctors often fail to talk about the goals that their patients have for their care, even though having these conversations increases patients’ quality of life and quality of dying. If you are facing a life-threatening illness, figuring out what you want for yourself may depend on getting these questions answered by your doctor…

• What are my treatment-options as my illness progresses, including their advantages and disadvantages?
• Which of these options do you recommend for my current situation and why?
• Can I spend the last days of my life at home? (If this is important to you, also ask about hospice at-home services.)
• Will you assure me that you will listen to my health-care proxy and help him/her honor my wishes and allow me to die according to my plan?

Note: If you live in the District of Columbia, California, Colorado, Montana, Oregon, Vermont, Washington or Hawaii and have a terminal illness, you can ask for a prescription for medication that will bring on a peaceful death. You must be capable of making this decision for yourself, have less than six months to live and be able to administer the drug yourself. If it is something you would consider (some people find that having this prescription in their home is comforting), the organization CompassionAndChoices.org suggests that you talk to your doctor about this as well. Its website details many end-of-life options.