By Kendra D. Sheppard, MD, MSPH, CMD
Advance care planning is defined as an umbrella term that describes the types of decisions that might need to be made regarding medical care. It is the act of considering those decisions ahead of time, and then letting others know about your preferences. These decisions are often put into a document called an advance directive. An advance directive is a legal document that goes into effect only if you are incapacitated and unable to speak for yourself. These decisions can be made at any age but often unfolds with diagnosis of disease, i.e., such as cancer or acute injury such as a trauma/spinal cord injury. This process is designed to help others know what type of medical care you want both in active treatment stages and for comfort care or end-of-life care. Just as your medical care changes so should your advance care documents. Do you have an advance directive? Probably not. According to a recent study, still only 1 in 3 Americans have done so. Why do we find it hard to do so?
Let us list some of the known barriers to completing advance directives:
- Talking about death is difficult. Often end-of-life decisions are made under duress in urgent/emergent situations.
- There is mistrust/distrust of the healthcare team in acute care settings. This mistrust/distrust in the system is based on both cultural and spiritual differences as well as implicit bias between the patient and provider.
- Cardiopulmonary resuscitation, mechanical ventilation, and other emergency treatments are not well understood. It is important that we have a frank discussion of how these treatments were designed to work.
- Living wills and other forms of advance directives may require legal action or often contested. You may be surprised to know that even when people fill out these forms, they are not always followed. Sometimes this is not intentional. Perhaps the document has not been updated. Perhaps the document was updated but not notarized. There are many variations to this theme.
While not an inclusive list, what are some ways that we can address some of the barriers and increase advances directives?
- Let us talk about death the way we talk about life. Acknowledge that this is an uncomfortable but necessary conversation.
- Share your story. Let us encourage families to share their experiences, both positive and negative, of having a plan in place. How did this help with family members, with grief, with estate planning?
- Make decisions. There are so many decisions to make. Allow Natural Death (AND)/Do Not Resuscitate (DNR) Orders are just the beginning. Do you want artificial nutrition via feeding tubes? Do you want to continue receiving [insert treatment here] even if there is no benefit or causes you harm? Would you prefer to not go to the hospital ever again so that you may die at home; or the opposite, seek out inpatient hospice care so you die in a neutral location? This may seem overwhelming at first. But the key is to start.
- Take the time to fill out the form. Unfortunately for now, advance directives/living wills are legal documents. Filling out the form is another layer of protection to ensure that your wishes are honored.
- Let your primary care physician know your wishes. If you have any questions or concerns, a trusted healthcare professional can guide you through whatever questions you may have. They can assist with getting your wishes in writing and getting them to cross healthcare settings (if applicable in your state).
Making decisions about end-of-life care is challenging at any age. However, it can be so rewarding for you and your loved ones knowing that your wishes were honored. I have listed 3 resources below for you and your family to begin your journey on completing your advance care directive.
- Advance Care Planning: Healthcare Directives. https://www.nia.nih.gov/health/advance-care-planning-healthcare-directives
- The Conversation Project—Have You Had the Conversation? https://theconversationproject.org/
- Approximately One in Three US Adults Completes Any Type of Advance Directive for End-Of-Life Care. (free article– https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2017.0175)
- Prepare for your Care—A Guide to Completing an Advance Directive. https://prepareforyourcare.org/how/introduction