Start the conversation
It’s natural for many of us to avoid talking about the end of life. Because of this, we often avoid speaking to our doctors about the kind 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 in 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. 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 and comfort level than they had before the discussion.
Don’t wait for your doctor to ask about your 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 things to consider when talking to your doctor:
- Let your doctor know that you are completing advance directives.
- Ask them to explain any treatment options and procedures you find confusing.
- Talk about pain control and symptom management options and let them know your preference between relief of pain or alertness. Ask if they would be supportive in 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. Make sure your doctor knows the name and telephone number of your appointed health care agent.
- Ask if he or she will honor the same request from your healthcare agent or your family if you become incapable of making decisions.
Ask your doctor to be honest with you and your family about your prognosis
It may be important to let your doctor know that you want them to be open and honest with you about your 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 them about the role you hope they will continue to play and how they can best help you and your family. Some questions to ask are:
- Will you talk candidly with me and my family about my illness?
- Can you give us a head’s up on what decisions my family and I 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, and make your goals and wishes known. Become your own advocate and begin these conversations early.