There will quite likely come a time in your life when you will just be too sick to make any decisions. When that time comes, doctors will turn to your “proxy” decision-maker. Your health care proxy is like a designated driver who takes over decision-making when you are unable to advocate for yourself.
Most people designate a person they trust deeply as their proxy. It is important to ensure that your designated driver has a clear understanding of what matters most to you so they can make informed decisions on your behalf. This raises the question of how well anyone really knows another human being, even those closest to us? This question is what my colleagues and I set out to answer.
Our findings appear in the Journal of Palliative Medicine.
We did a simple three-step study with 80 patients and their designated decision makers. The proxies were spouses (71 percent), adult daughters (8 percent), mothers (8 percent), or connected to the patient in other ways (12 percent).
For the first step, each patient was given a simple advance directive form and was asked to make choices about the types of medical care they would want in the future. Simultaneously, and without communicating with the patient, the patient’s proxy completed the same form, on behalf of the patient.
In the next step, the patient and proxy swapped and read each other's forms.
What they found was quite surprising — in every case, the patient and their proxy had differences in opinion about various treatment choices. For example, compared to their proxies, patients in our study were more likely to ask for electrical shocks to try to restart the heart if it were to stop. Patients also were more likely to ask for breathing machine support if they developed trouble breathing.
On the other hand, their proxies were more likely than patients to ask for dialysis if the patient’s kidney failed and also more likely to ask for hospice care when the patient became too sick.
In the third step of the exercise, we asked each pair to discuss their decisions. This conversation typically lasted for about 30 minutes, then they collaborated to fill out the final version of the form together.
A wonderful thing happened here — not only did they successfully complete the form together, but we were surprised to see that in most cases, the proxies willingly acquiesced to the patient’s original wishes and treatment choices.
"Don't try this at home" is a common phrase used in the media to advise against imitating a daring activity by yourself. But this is a daring activity that you should definitely try at home with your proxy. It will take some amount of courage to engage in this simple three-step exercise, as the topic is inherently sensitive.
As much as you may think you know your loved ones really well, I will go out on a limb and say that most of you are in for quite a surprise. However, having differences in opinion is completely normal.
If you actually follow the three-step process faithfully, you will uncover key areas where you and your proxy disagree and have an opportunity to engage in a deeply personal and meaningful debate with your designated driver about the "route" and your preferred "destination." Some of you may even identify irreconcilable differences and choose to appoint a different designated driver. No matter the outcome, this exercise is well worth your time and will unmask some personal blind spots at a time where you can still remedy them.
So what happens to the stubborn few who refuse to document who your designated driver is going to be?
It really depends on where you live. In most states, there is a state-determined hierarchy of who gets to make health decisions on your behalf if you are not able to. In other states, there is no clear hierarchy and your ultimate fate may be decided by a group of doctors and lawyers.
However, you can save yourself and everyone else a lot of heartache if you sit down right now with your designated driver for an hour. All you need is three copies of the Stanford What Matters Most letter directive and a big helping of intestinal fortitude, and you are good to go.
VJ Periyakoil, MD, directs the Stanford Palliative Care Education and Training Program and the Stanford Aging, Geriatrics and Ethnogeriatrics Transdisciplinary Collaborative Center. She tweets @palliator. This work was supported by the National Institutes of Aging and the Feigenbaum-Nii Foundation.
Photo by A. L.