Why Don't More Healthcare Professionals Have End-of-Life Directives?

Based on healthcare professionals’ firsthand experiences with patients, it stands to reason that they would be highly motivated to create end-of-life (EOL) care plans for themselves.

The plans, also called advance directives, would tell loved ones and healthcare providers exactly how they feel about end-of-life (EOL) care and who will make decisions for them if they are unable to do so themselves.

However, studies and surveys show the general public embraces advance directives at rates greater than healthcare professionals. In one Kentucky ICU, only 13% of the team members have formal EOL care plans. Among the general public, 39% have a living will and 33% have appointed a power of attorney for healthcare.

Take action today: A step-by-step guide to your advance directives

EOL experts recommend taking these steps now to make sure your wishes are known and carried out if you are diagnosed with a terminal disease or are approaching death and cannot speak for yourself:

• Learn about the end-of-life care options available to you, including how to start the conversation.
• Ask hard questions and then decide for yourself what kind of care you want, and which interventions or treatments you do not want.
• Discuss your wishes about death and dying with your family, loved ones, partner, healthcare provider, and the person you've designated as your healthcare power of attorney.
• Put your wishes in writing so your choices are clear to everyone involved; make sure a written copy is included in your medical record or chart. Download state-specific forms to start the process.
• Distribute copies of your advance directives to family members and anyone who will be involved in end-of-life decisions, including your doctor and members of your healthcare team.

Five Wishes is a living will that uses plain language (in any language) to spell out your medical, personal, emotional and spiritual wishes near the end of life. It is available from the non-profit group Aging With Dignity. Check to make sure the Five Wishes document is valid in your state; some states require additional forms or notices for it to be recognized.

Moreover, a 2013 Stanford University survey found that while the majority of physicians would take aggressive action to save their patients’ lives, nearly nine in 10 would choose do-not-resuscitate (DNR) orders for themselves in the event of a medical crisis, injury or terminal diagnosis—perhaps because they are acutely aware of the side effects, costs and negative consequences of feeding tubes, breathing tubes and other EOL interventions.

Which raises the question: If they know what they want (and do not want), why don’t they put their wishes in writing?

What’s holding healthcare professionals back?

A variety of dynamics are at work among healthcare professionals who have not formalized their EOL wishes:

• Because they deal with illness and disease daily, many are not yet ready to confront death and dying for themselves
• Some have discussed EOL issues or healthcare power-of-attorney designation with a spouse/partner and family members, but have not put their own wishes in writing
• Some receive little or no training about how to talk to patients about palliative care, death and dying—a gap that is likely to spill into their own decision-making process
• Cultural influences might play a role; a 2017 study found that members of non-Western cultures often delay EOL planning because of a sense of fear or inappropriateness attached to the topic of death
• Physicians specializing in emergency medicine, pediatrics, obstetrics-gynecology, and physical medicine/rehabilitation are more favorable toward advance directives, compared to specialists in radiology, surgery, orthopedics and radiation oncology, according to the Stanford survey

Get started: Confirm EOL wishes, designate a decision maker

Advance directives typically involve two common and easy-to-execute documents:

• A living will, which indicates the types of care a patient wants (and does not want) when facing a medical crisis or death, especially if the patient is unable to communicate
• A durable power of attorney for healthcare, which designates someone who will speak and decide for the patient in accordance with the patient’s values and wishes

Healthcare professionals—whether placing a patient in an appropriate hospice setting or performing brain surgery—make life-and-death decisions all the time.

But if they lack a formal end-of-life plan for themselves, or if they avoid frank discussions about advance directives, they create situations in which their loved ones and doctors are forced to make critical decisions in less-than-ideal circumstances. Lacking clear guidance, their own doctors might decide to treat as they see fit, regardless of the patient’s wishes. Families and caregivers might choose more aggressive (and unwanted) treatment options, especially if they are conflicted about the patient’s wishes or if their values are at odds with the patient’s.

End of life: a delicate and complicated subject to start discussing now

Yes, discussing death and dying can be difficult and emotionally unsettling.

But advance directives are the surest way to make certain that decisions about your own life and death—made at a time of mental clarity—are carried out according to your wishes and values.