An edited version of this blog was previously published on January 25, 2020 as Frances: A Cautionary Tale.

Time to Revisit Advance Care Directives

Given the COVID-19 pandemic, this seemed to be the right time to revisit the reason why people who want to have a say in their care, in the event of serious illness, should consider having  Advance Care Directives (ACDs).

ACDs are not medical documents, nor are Emergency Medical Services (EMS) bound to the ACD. EMS will initiate CPR and continue it, with the agreement of the Emergency Room (ER) physician. The ER medical doctor can stop CPR if they choose.

Each state may have a unique ACD requirement. A free form can be found here.

A Provider Order for Life-Sustaining Treatment (POLST) is also necessary. This a directive signed by an M.D. that can be honored by EMS. It is usually used in terminal or debilitating conditions, and it makes clear the wishes of terminally ill or fragile patients concerning which end-of-life treatments they may, or may not, wish to receive. It should not be confused with a Do Not Resuscitate (DNR) order which addresses only a patient’s wish to not receive CPR if their heart stops beating.

Since we are in the midst of a health crisis that is causing so much uncertainty, perhaps everyone should have an ADC. Those who would like to add the POLST may choose to do so.

However, creating the appropriate documentation alone is insufficient. You must also make sure that someone you trust knows where to find the paperwork, if necessary. Please read the story of Frances to understand why.

Frances: A Cautionary Tale

 If you become sick and incapacitated, who will decide what type of medical treatment you receive? Many people don’t want to leave it to chance. They document their end-of-life preferences and prepare advance health care directives, and they believe this will ensure their wishes will be followed.

However, too often that doesn’t happen. As the New York Times reports, the language in advance health care directives is often unclear, so doctors and family members may not know what their legal obligations are under specific circumstances. Also, having prepared advance health care directives may provide a person some comfort but can’t help if nobody knows they exist.

Court-Appointed Guardians

Frances’s story is an example of how end-of-life wishes can be ignored. She was estranged from her family, so she asked her longtime business associate, Eleanor, to be her health care proxy. If there ever came a time when Frances couldn’t make her own decisions, Eleanor would do so as proxy. They signed the paperwork—but then Eleanor lost track of Frances.

After an incapacitating stroke, Frances was placed in an assisted living facility. She suffered from aphasia and, perhaps, dementia. She no longer had a voice in where she was, what happened to her home, or what medication she was given. In fact, all control of her life had been ceded to an unknown and potentially self-serving court-appointed guardian.

States can give strangers control over a debilitated person’s money, home, and health care treatment. Referred to as guardians, they are professionals who handle the affairs of the elderly when there are no family members to take on that responsibility, and no paperwork leading to anyone else who is willing to do so.

Court appointed guardians may be honest and very much interested in the best for the incapacitated person, but this is not guaranteed. The guardian may have minimal accountability, and the person placed under guardianship can be at the mercy of this individual. Loss and abuse may follow. A HuffPost article has called this situation an “epidemic.”

According to AARP, court-ordered guardianship “often leads to isolation and exploitation of older Americans.” Approximately 1.3 million adults, most of them older than 65, are currently under guardianship. Frances is only one of them. Her story strikes a chord with me, because people of a certain age, or those with a disability, can so easily find themselves in that position.

The Missing Health Care Proxy Document

A neighbor remembered Frances had once appointed someone named Eleanor (whose last name was unusual enough and whose profile was high enough that she could be found online) as her proxy. The neighbor tracked Eleanor down, hoping she would be able to legally advocate for Frances.

Eleanor was unable to find her copy of the health care proxy document. However, she drove eight hours to the assisted living facility where Frances had been placed. She was able to ascertain that Frances was relatively comfortable and safe.

Eleanor was still worried that the court-appointed guardian had questionable motives for getting involved in the case, and she was brokenhearted to know that the advance health care directives Frances had put in place had not been honored. No one besides Eleanor knew what they were, and she was not allowed to participate in the decision-making process.

Eleanor says, “Frances had a will, a trust, a health care power of attorney, and other documents executed. She chose me as her health care proxy because I have extensive experience in finance administration. We’d worked in the same industry for decades and had a mutually trusting relationship. But we both failed to do what we needed to do to be sure Frances’s preferences were honored.”

Difficult Conversations Can Make All the Difference

At some point, many of us may find ourselves in a position where we can’t communicate our preferences. It can be helpful to think through the type of medical care you will and will not want to receive in various situations, and commit your wishes in writing by filling out your state’s advance directive form.

Unfortunately, if the probate court (or whatever it is in your area) chooses, the judge can set these arrangements aside and institute whatever she or he deems necessary, which usually includes appointing a professional guardian. This is most likely to happen when trustees or guardians cannot be located, though, so do your best to cover your bases in advance.

It is important to have conversations with your closest family members, friends, and healthcare providers about the medical care you would prefer in the most difficult situations. Give them copies of the paperwork. Avoid creating a vacuum that a professional guardian may be ordered to fill by firming up your own support network now—while you still have time.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences.

You can find him on Twitter: @LynnRWebsterMD.