Data Suggest a Need to Educate Patients on End-Of-Life Decisions

By Anu Suri, MD

Respecting patients’ autonomy is one of our utmost responsibilities. We all are familiar with the process of informed consent prior to performing a procedure. When it comes to life-sustaining treatments, however, we don’t always know our patients’ wishes.

I recently completed a retrospective chart review of 1,365 patients who were seen in the outpatient pulmonary clinic between July 1, 2014 and June 30, 2015, and discovered that only 20 percent had some form of valid advance directive in their electronic medical records (EMR).

What’s more, according to a recent study, almost 70 percent of Americans die in a health care institution contrary to their wishes to die at home.1

This data convinced me that I needed to educate my patients about end-of-life documents and decisions.

End-of-life conversations with patients

I recently undertook a project to better inform my patients about advance directives. Through conversations with my patients, I realized some were not aware of what these documents mean, their role in the medical world and how to complete them. The project was both time-consuming and emotionally challenging. Yet I also found it fulfilling to help my patients navigate a range of decisions including organ donation and life-sustaining therapies.

Here are some cases I encountered:

• One patient had to make the decision to withdraw his father from life support against the wishes of his sibling. His father did not want to be kept alive on machines if there was no hope for him to have a reasonable quality of life.
• Another thought her spouse “would know what to do when the time comes.” Then we discussed her wishes for life-sustaining treatments, and she realized she and her spouse didn’t have a similar vision on this subject. She chose her daughter to be her Health Care Power of Attorney (HCPOA).
• While reviewing one of my patient’s HCPOA in the EMR, I discovered that it listed her ex-spouse as the medical decision maker. She revised the form that day.

Improving end-of-life care: A work in progress

The project convinced me to approach the importance of advance directives from many points of patient contact — in the offices of primary care doctors or specialty physicians, as well as in emergency rooms, hospital wards, nursing homes and intensive care units. A multidisciplinary approach that includes physicians, nurses, social workers and spiritual care workers is also in order.

The project made me realize that as physicians we are taught the science behind medicine but the same emphasis is not given to the art of making a real connection with and having a lasting impact on our patients. Discussing end-of-life decisions is one way we can do that.

I urge my fellow caregivers to take inspiration from my experiences and grab every opportunity to educate their patients about their right to a dignified life and death. We are our patients’ advocates. If we don’t guide them, who will?

Dr. Suri is staff in the Respiratory Institute.