Why an advance directive is so important, and what's involved in the decision

Before I left for college, my family and I went to complete an advance health care directive. Having not known what an advance directive was or what it included, I was a bit startled when I was presented with a form asking me to decide whether I wanted to prolong life in the case I was diagnosed with an incurable, irreversible condition leading to death (among other difficult questions).

It seemed unnecessary that I, a relatively healthy eighteen-year-old with no life-threatening condition, had to think about and document my end-of-life care wishes. I figured it was simply a coping mechanism for a mother about to lose her child to college. However, I now appreciate the value of completing an advance directive for both myself and my family.

An advance directive is a written, legal document of a person’s preferences regarding medical treatment. In the case of an individual who is unable to make a decision for themselves due to a medical condition, the advance directive guides care choices. Therefore, advance directives serve the role of allowing this individual to maintain their ability to receive care they want. In short, an advance directive assures that one’s end-of-life care preferences are known and will be honored.

Advance health care directives are comprised of two forms: a health care power of attorney and a living will. Within the health care power of attorney form, an individual names a person (known as a health care agent or proxy) to make medical decisions for that individual if they become incapable of making their own decisions. This health care agent has the right to consent or refuse any care, select or discharge health care providers and institutions, approve or disprove diagnostic tests and surgical procedures, direct the provision of artificial nutrition and hydration, authorize autopsy, and direct disposition of remains. The form also allows the individual to limit the authority of their health care agent. 

When I completed my health care power of attorney, I considered the qualities important in a proxy. Importantly, I wanted to choose an individual who knew my health care wishes and would be willing to honor those wishes (regardless of their beliefs). Like I mentioned earlier, I hadn’t considered my end of life preferences. However, completing this form pushed me to think about what I wanted my end-of-life care to look like and communicate these wishes to my family. I now feel comfortable knowing that my designated proxy is aware of my health care preferences and will advocate for me if there are disagreements regarding my care. 

A living will is a document in which an individual explicitly states which treatments they would (and would not) like to use to prolong life and states preferences for medical decisions such as pain management and organ donation. The document addresses preferences regarding the use of life-prolonging procedures such as mechanical ventilation, tube feeding, dialysis, and antibiotic use. Additionally, one can direct treatment for the alleviation of pain (known as palliative care) at all times, even if this care may reduce life expectancy. Finally, one may choose to address organ donation and body donation (for scientific study) within the living will. The will is living in the sense that these directions can be changed at any time. As age and/or health state changes, medical care preferences also tend to change – the living will assures changes in medical wishes will be honored.

There are multiple considerations that go into each of the above decisions. For example, I personally chose palliative care and decided to forego life-sustaining procedures if I was diagnosed with an incurable, irreversible condition that would ultimately result in death. This is due to the fact that I would prefer to spend my final moments comfortable and surrounded by family rather than in pain, enduring aggressive, expensive procedures that may or may not increase life expectancy. My thoughts and preferences surrounding palliative care may change in the future, and I am comfortable knowing I can edit my living will to accommodate these changes.

The burden of making end-of-life care choices for an individual is substantial. Intense emotions during this distressing time make it difficult to separate patient preferences from personal preferences. Differing opinions regarding care often lead to destructive arguments among the patient’s loved ones. An advance directive makes these patient preferences explicitly clear, alleviating the decision-making burden on loved ones and eliminating potential disputes. 

An accident can happen at any time. I may find myself in a position where I am unable to communicate my medical preferences. Fortunately, my wishes for end-of-life care are explicitly stated within my advance directive. I take comfort knowing that I will not receive unwanted treatment. If a medical situation occurs that I did not anticipate within my living will, I am confident that my health care agent will make medical decisions there are in line with my values. 

Click here for state-specific instructions and forms for completing an advance directive.

—Jon Scalabrini