COMMENTARY: Start the conversation with your doctor

I encourage everyone to have an end of life conversation(s), it may take more than one conversation, with their doctor.

It is natural for many of us to avoid talking about the end of life. Thus, we avoid speaking to our doctors about what type of end of life care we would want. However, as hard as it may be speaking with your doctor about your end of life care wishes, it is a critical step in ensuring your wishes are met. We need to have these conversations while we are healthy, prior to an illness or accident strikes. Many studies have shown that a lack of early and continual communication with doctors causes confusion about medical treatments, conditions, and choices that need to be determined.

According to research, as many as three-quarters of physicians whose patients had Advance Healthcare Directives (AHD) were unaware that those documents existed. Only 12% of patients with AHDs had received input from their doctor.

However, studies show that those who had routine 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.

Do not wait for your doctor to ask about your wishes

Chances are your doctor is waiting for you to start the conversation, and would welcome the discussion. Here are some things to consider when talking to your doctor:

• Let your doctor know that you are completing an Advanced Healthcare Directive.

• Ask them to explain any treatment/ procedure options 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 on 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 Advanced Healthcare Directive. 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 AHD. Make sure your doctor has the contact information for your appointed health care agent.

Ask your doctor to be honest with you and your family about your prognosis

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 want them to play and they can best help you and your family. Some questions to ask are:

• Will you talk candidly with my family and me about my illness?

• Can you give us a heads 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 palliative and/or hospice care and help me get care?

• Will you remain part of my care team and be available to my family and me for questions?

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 doctor and family to make your goals and wishes known. Become your own advocate and begin these conversations early on.

Hematologist/oncologist Andrew L. Himelstein, MD, FACP, is medical director of Delaware Hospice

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