As an end-of-life (EOL) consultant, one aspect of my job is advance care planning, which is
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 through 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 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 Advance Directive (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 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. 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 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/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!
