Patient and Caregiver Resources

Talking to Your Doctor About End-of-Life Care

It’s natural for many of us to avoid talking about the end of life. Because of this, many of us avoid speaking to our doctors about what type of end-of-life care we would want. But as hard as it may be speaking with your doctor about your end-of-life care wishes, it’s a critical step to ensuring your wishes are met. Many studies have shown that a lack of communication with doctors causes confusion about medical treatments, conditions, and choices that need to be made.

According to research, as many as three-quarters of physicians whose patients had advance directives were unaware that those documents existed. And only 12% of patients with advance directives had received input from their doctor. But studies show that those who had conversations with their doctors about advanced care planning had increased satisfaction. In fact, patients who talked with their families or physicians about their preferences for end-of-life care:

  • Had less fear and anxiety.
  • Felt they had more ability to influence and direct their medical care.
  • Believed that their physicians had a better understanding of their wishes.
  • Indicated a greater understanding of their health status and what matters to them, as well as an increased comfort level with the idea of dying than they had before the discussion.

Start the conversation yourself

Don’t wait for your doctor to ask about your end-of-life wishes. Chances are, your doctor is waiting for you to start the conversation—and would welcome talking with you about your wishes. Here are some tips for talking with your doctor about end-of-life care:

  • When you are completing advance directives, let you doctor know and seek their input.
  • Ask your doctor to explain any treatment options and procedures you find confusing.
  • Talk about pain control and symptom management options and let your doctor know your preference between pain relief or alertness. Ask if they would be supportive of letting you determine when and how much pain medicine or sedation is enough on an ongoing basis.
  • Share your thoughts about quality of life and what in life is important to you; if you choose quality over quantity of life, let them know.
  • Make sure your doctor is willing to follow your directives. The law does not force physicians to follow directives if they disagree with your wishes for moral or ethical reasons.
  • Give your doctor a copy of your completed directives. Be sure your doctor knows the name and telephone number of your appointed healthcare agent.

Ask your doctor to be honest about your prognosis

It’s important that you let your doctor know that you want them to be open and honest with you about any current or potential illness and your prognosis. Some doctors may shy away from letting a patient know they are dying, especially when no one raises the issue. Also, speak with your doctor about the role you hope they will continue to play in your care and how you think they can best help you and your family.

Some questions to ask your doctor are:

  • Will you talk candidly with me and my family about my illnesses?
  • Can you give us a heads-up on decisions my family and I will have to make?
  • What will you do if I have a lot of pain or other uncomfortable symptoms?
  • Will you be open about my prognosis and let me know if my treatments stop working so my family and I can make appropriate decisions?
  • Will you support my decision to choose hospice and help me get hospice care?
  • Will you remain part of my hospice care team and be available to me when I’m close to the end of my life?

All of us want to die peacefully, but we cannot do it alone. If you want some control over your final days, it is important that you speak to your family and your doctors to make your goals and wishes known. Become your own advocate and begin these conversations early on.

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