(Althea Halchuck is a Board-Certified Patient Advocate (BCPA) with over 20 years of experience advocating for the vulnerable and dying. She started Ending Well! Patient Advocacy to assist those at the end of their lives, offering support – including end-of-life counseling, advance care planning, legacy creation, and doula/vigil services. Her trademark is “Death Maven.” This article, used with permission, was first published on KevinMD.)
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Health is a matter of choice, not a mystery of chance. – Aristotle
As an end-of-life (EOL) consultant, one aspect of my job is advance care planning, which is helping people create an Advance Directive (AD), which has two components. The living will portion lists the treatment options and choices you want, or don’t want, if you become incapacitated through an accident or medical crisis.
In the second portion, you name a surrogate to follow through on those choices. Other names for a surrogate are agent, healthcare proxy, and medical power-of-attorney. The roles are nuanced by each state, but essentially, they all have the same function: speaking for an incapacitated patient.
Your choice of surrogate may be more important than your living will.
The person you choose as your surrogate plays a crucial role in ensuring you receive the care you want when you’re incapacitated. If your AD is properly executed, it acts as a guide for your surrogate. Their role is not to make decisions, but to uphold the treatment wishes you’ve outlined in your Advance Directive. It’s vital that you and your surrogate have numerous discussions about your living will choices, including your values, what’s most important to you, quality versus quantity of life, and your care goals.
These are the biggest challenges you face as a surrogate/proxy:
1) Emotional strength is most important when helping an incapacitated loved one. The fact is, at EOL, you often must make hard decisions that can result in death, such as removing a ventilator or a feeding tube.
Most people can’t do that without some guilt or second-guessing themselves, even many years after the death. For this reason, a spouse or child may NOT be the best person to follow through on EOL wishes.
2) Another challenge is family opposition/interference or even resistance from medical providers. Getting the family on board with the surrogate choice and treatment decisions is crucial. A conflicting family member can cause medical professionals to ignore the AD or surrogate and “err on the side of life.”
Legally, staff must follow the AD and listen to the surrogate’s instructions, but a noisy and insistent family member can cause havoc and dissension at the bedside. Letting the family know beforehand that you have been chosen as the “boss” will help alleviate conflicts. Having the patient create a video to use as a backup stating their treatment wishes and naming you as the surrogate can make the process easier for the family to accept.
3) Don’t be afraid to approach authority figures, especially doctors, to help explain treatment options and medical language. You are not expected to know everything and may need the guidance of experts to carry out your surrogate duties. You may choose alternatives, such as no treatment and providing comfort care –tough choices for anyone.
4) Do you have the persistence and stamina to fight for the patient or to let them go? If the patient is dying, anticipatory grief may be a factor, and you may be very emotional. It’s a tough time for any surrogate, especially if you are very close to the patient. Advocating for them is job one, and you need to be tenacious like a bulldog to see it through.
A surrogate needs to be confident, fearless, and persistent, like a dog with a bone.
- You must know the patient well, understand their values, beliefs, and preferences, and agree to carry them out.
- When there is ambiguity, you must advocate for the patient’s wishes, seeking to make decisions as the patient would have made them if they had decision-making capacity. Try to walk in their shoes and use their preferences/values to do what is in their best interests.
- Always advocate for the patient, even in emotionally fraught or life-or-death situations.
- Don’t back down or be intimidated by those in power.
- Be deliberative and decisive in quickly changing or emergent situations; be a good listener. Don’t be a wallflower. The patient is counting on you to follow their wishes.
Be like a Bulldog. Despite this breed’s grumpy face, the English Bulldog is friendly and curious. They are also courageous, loving, and highly loyal to their owners. However, Bulldogs also tend to be stubborn and strong-willed. Their tenacity and resolve mean it’s difficult to get them to change their minds once they decide to do something.
Having that bulldog personality will keep your patient or loved one from enduring unwanted medical treatment and keep the focus on what they do want. Surrogates must be like the Bulldog!
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
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Thank you Althea. An advance health care directive is only as good as the person you appoint to represent you. Your article should be kept right next to the directive itself. I’m going to send a copy to each of my kids.
Thanks, Althea, for reinforcing this important information, which I continually emphasize in my presentation “Talking About Death Won’t Kill You!”
You also need a bulldog to fight for you if you *want* everything done for you. My late husband, a private-pay long-term care resident for many years due to frontotemporal dementia, was hospitalized with COVID-19 before vaccines were available. No visitors were allowed unless a patient was close to death. He was recovering, but not putting on weight and not eating well. I was under heavy pressure to place him on hospice care. I e-mailed his health care POA to the hospital social worker assigned to him. I knew he wouldn’t want hospice care if there was anything that could help him because of what he had said to me in the past when he was in the early stages of the disease. The social worker really didn’t take me too seriously. So I e-mailed his neurologist (the medical director of his long-term care center and a faculty member at this hospital). We had a virtual care conference scheduled for two days from then. He called me that night. He said, “I can see things in his records that you cannot see in the MyChart patient portal. I’ll check everything and attend the care conference in person because I’ll be at the hospital that day.” He pointed out at the care conference that my husband hadn’t been tested for a thyroid disorder and he might not be eating well because the hospital gave him an antipsychotic medicine that made him sleepy. The neurologist ordered that my husband be tapered off the antipsychotic and be tested for a thyroid disorder. Sure enough, he had one and began generic Synthroid. He began eating again and was more alert. He left the hospital and lived another 13 months, I shudder to think of what would have happened if his neurologist hadn’t been willing to get involved. I made the neurologist’s research fund one of the places to donate in my husband’s memory when he died and it appeared in all three of the obituaries I placed for him in three newspapers. That raised several thousand dollars for the neurologist’s research, including from some of his high school and college friends that he hadn’t seen for years, These dear people were also able to “attend” his Requiem Eucharist at our church virtually because that was available free, with a private link. Of course, I did the right thing and donated to the church’s Tech Services ministry in my husband’s honor because someone had to come in on a cold Saturday morning to livestream the Eucharist, and as the guy who headed this ministry, “Our budget is pretty skimpy. We can always use the money,