“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 involves helping people create an advance directive. An advance directive (AD) has two components. The living will portion lists the treatment options and choices you want or don’t want if you become incapacitated due to an accident or a medical crisis. In the second portion, you name a surrogate to follow through on those choices. Other names for a surrogate include agent, health care 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 advance directive 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 AD. 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. At EOL, you often must make difficult 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, 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. Family opposition/interference or resistance from medical providers is another challenge. 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 as a backup, stating their treatment wishes and naming you as the surrogate, can make the process easier for the family to accept.
3. Fear of approaching authority figures, especially doctors, needs to be overcome 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. Persistence and stamina to fight for the patient or to let them go is usually required. 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 the patient 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 and 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 its grumpy face, the English bulldog is friendly and curious. It is also courageous, loving, and highly loyal to its 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 prevent your patient or loved one from enduring unwanted medical treatment and keep the focus on what they do want. Surrogates must be like bulldogs!
Althea Halchuck is a patient advocate.
