Anyone with a life-limiting diagnosis, would be wise to complete an advanced directive and designate a health care proxy.
An advanced directive—sometimes called a living will or health care power of attorney in some states—is a document that guides first responders and physicians regarding the types of treatment you want to receive in the event of a medical emergency. It also authorizes your proxy to act on your behalf if necessary.
My worst cases are those where a patient has landed in the ER and they are unable to articulate what they want, and have never discussed it with their family. Procedures like resuscitation are not reversible and they are not as successful as portrayed on television and in movies. So, if a patient’s idea of quality of life does not include being permanently dependent on others for major portions of their care, you may be giving them exactly what they don’t want.
Prior to COVID-19, more than 70 percent of U.S. adults had no advanced care directive. And while there are plenty of forms out there, as well as individual documents that people have had their attorneys draw up, these can be inadequate. Forms can’t account for every situation, and attorneys are not physicians. They can’t have the nuanced conversations with people that physicians do.
If you receive a life-limiting diagnosis, I urge you to seek out a physician who is specially trained to partner with you to manage complex care for your own benefit and that of your family. Palliative care physicians have the expertise to help you all feel more confident when faced with making difficult choices. For example, it may be more compassionate to allow a patient with no chance of recovery to opt out of additional aggressive treatment and instead focus on treatments that promote quality time with friends and family.
Advance planning keeps you in control over your care by ensuring your care goals are known to your medical providers and family. It empowers them to effectively act on your behalf and in line with your wishes.