Do’s and Don’ts

“It’s time to put his advance directive into effect.” Coming from my dad’s oncologist, these words did not elicit the reaction I anticipated. Just a few weeks previously, my parents had been touring the eastern Mediterranean, and seeing the rapid deterioration of his health upon their return had been a shock. Tests confirmed cancer that had spread from the lungs throughout the rest of his body to an extent that any disease-modifying treatments were unlikely to accomplish the cure our family was wishing for. In confirming the worst, the cancer specialist’s statement did not bring the expected heart-sinking despair; instead, I felt a sort of sad calm and a sense that, “OK. Now we know what to do.”

Dad’s physician already knew I was a doctor, but her own obvious distress from delivering this news clearly lessened when I told her that I specialized in hospice and palliative medicine and that I knew what to expect next. Palliative care is about listening to patients, determining what is important to them and helping them and their families negotiate our healthcare system to select the treatments most likely to meet their goals. Professionals specializing in hospice and palliative medicine have expertise in this, as well as managing distressing symptoms associated with a serious or life-threatening illness. While never easy, determining a patient’s goals is vastly complicated when that patient is too sick for such discussions. Unfortunately, this situation happens all too often, leaving family members struggling to decide what their loved ones’ wishes would be.

This is where advance care planning comes in. By having discussions with those you identify as family, in conjunction with the healthcare professional most involved with your care, you remain in control even if circumstances leave you unable to speak for yourself. This is accomplished through advance directives—written documents indicating what your wishes would be if, and only if, you are incapacitated and unable to direct your care. You can update, change or revoke them at any time. A common mistake is thinking that advance directives are only about forgoing treatment. While that is how they are most often used, they just as readily allow you to indicate treatments you do want undertaken.

Because not all circumstances can be readily foreseen, it is also useful to designate someone who knows you well and is constitutionally equipped to direct treatment based on your, not his or her, wishes. This type of advance directive indicates your chosen proxy from whom healthcare professionals will receive directions. Without an advance directive, every state has its own procedure for designating who will make those decisions for you. Not making a choice is itself a choice, the one of letting your state decide who speaks on your behalf, even if that is not the person you might want.

While never easy, determining a patient’s goals is vastly complicated when that patient is too sick for such discussions.

Taking the few hours of time needed to give this kind of direction to your family means that the treatments you desire are more likely to be carried through. Having an advance directive has also been shown to greatly reduce family members’ stress, since they are less likely to later feel tortured by wondering whether they made the “right” choice.

My dad gave me many things for which I am thankful, but one of his most treasured gifts was his foresight in sparing my mom and me the difficulty of making really tough decisions regarding how to proceed when treatments were unlikely to help. Thank you, Dad. I hope my own kids are as appreciative of my own advance directive.

—Ronald Crossno, MD, CMD, is president of the American Academy of Hospice & Palliative Medicine and national director of Odyssey HealthCare.