Who will speak for you? How to choose the right healthcare proxy.
Who Will Speak for You? How to Choose the Right Healthcare Proxy
I'm an end-of-life doula specializing in helping people plan for the inevitable, including creating an advance directive. When working with a client, my first conversation is about choosing a healthcare proxy who will speak for you and make your healthcare decisions when you cannot. Naming your healthcare proxy is the most important decision on an advance directive. Unfortunately, most people make this decision quickly, unaware that the advance directive does not cover many healthcare situations in which you will find yourself. Even when the advance directive covers the situation, you will still need someone to speak for you when you cannot.
According to an article in the Journal of Critical Care, about half of ICU providers surveyed were not confident that medical team members fully understood their patient's DNR orders. According to another article, 69% of surgeons would resuscitate their patient during surgery if the patient had an issue that was caused by the medical team, regardless of their patient's wishes. Compound that with the differing opinions of family members, and you begin to see the potential risks of not choosing a healthcare proxy wisely. When it comes down to it, having an advance directive does not guarantee that your wishes will be respected.
What is an Advance Directive?
For those new to healthcare planning, an advance directive is a legal document that communicates your healthcare wishes when you cannot do so yourself. It includes directions on life-sustaining wishes (CPR, ventilators, dialysis, artificial nutrition, hydration), pain management, and organ/tissue donation. An advance directive also includes a section to name your healthcare proxies.
Many confuse an advance directive, a living will, and a Physician's/Medical Orders for Life-Sustaining Treatment (POLST/MOLST).
· An advance directive is a legal document that outlines your healthcare preferences if you become incapacitated. It is used when you cannot communicate or make healthcare decisions. The document has a section to name your healthcare proxies. You must provide this document to each healthcare provider separately.
· A living will is a legal document that provides your preferences for end-of-lifecare, such as resuscitation, feeding tubes, and life support. It will only be used when you are terminally ill or permanently unconscious. It does not name your healthcare proxies. Like an advance directive, you must provide this document to each healthcare provider separately.
· A POLST/MOLST focuses on your preferences for an existing condition for which you are receiving treatment. It does not name your healthcare proxies. This document will travel with you across medical settings.
What is the role of a healthcare proxy?
Healthcare proxies are called many things: healthcare proxy, healthcare agent, healthcare representative, and healthcare power of attorney. I wish that we'd call them healthcare advocates because the role is highly active and vocal. Their primary roles include:
· Making your medical decisions when you are unable to.
· Speaking for you and ensuring your wishes are respected.
· Knowing your wishes and values about the treatments you wish to receive or not receive and the 'why' behind it.
· Advocate for you to withhold or withdraw life-sustaining treatments such as do-not-resuscitate, ventilators, feeding tubes, and hydration.
· They should be able to ask questions to obtain information from doctors and the medical team.
What makes a good healthcare proxy?
As you can see from the above list, being a healthcare proxy is a significant responsibility. Choosing a healthcare proxy must be done with intention and without emotions.
· They should be someone you trust. You should not fear giving this person responsibility for your health and life.
· They should live close to you.
· You should have an ongoing relationship with them.
· Their values should align with yours. They will need to make decisions that are not in the advance directive for you.
· They should be level-headed, communicate clearly, and be unafraid to go against doctors' recommendations. Doctors have been trained to save a life at all costs, not considering quality of life.
· They should have the ability to make tough decisions under pressure.
· They need to be willing to hasten your death. It is a tough ask; you must be honest with who can do this. Would your mom? Your spouse? It is a lot to ask of a person. (Read that again.)
I always advise my clients to choose more than one healthcare proxy, a primary and a backup. Some advance directives recommend having three.
Healthcare Proxies Chosen. Now What?
You've gotten this far; great job! Now, it is time to invite your proxies over for a discussion. If you have a significant other who is not a healthcare proxy, make sure they are present. The discussion will be long and difficult. You should set aside at least two hours for it.
During the discussion, review what you value most in life. What does a good quality of life mean to you? What would make life unbearable for you? Your experiences surrounding death and illness: have you been present when a loved one died? Have you been a caretaker? Fears about filling out the advance directive. Your religious and spiritual beliefs. Cultural beliefs around illness and death. And discuss the goals of various treatments noted on the advance directive. What outcomes would be acceptable? (As an example, studies have found that only around 11-22% of people survived CPR to hospital discharge. Of those, 15% experienced "a significant enough decrease in function... that they were no longer deemed able to fully care for themselves". Most people did experience cracked ribs/sternum and, as a result, were put on ventilators. These statistics have been consistent across most studies on CPR effectiveness.)
This discussion will clarify things for you and your healthcare proxies. You should only fill out the advance directive paperwork after this conversation.
Discussing Your Wishes with Your Family
A discussion that includes your family and your healthcare proxies will ease some of the burden for both the healthcare proxies and your loved ones. Once you complete and legalize your advance directive (read the directions on your state's advance directive), it is time to include the rest of your family. Before the conversation:
1. Send each participant a copy of your advance directive and ask them to read it and come prepared with questions.
2. Let them know that you will be discussing your values, wishes, and the 'whys' behind them during the conversation.
3. Let them know that you will also be introducing your healthcare proxies.
This conversation has two goals: to help your family understand your values and healthcare wishes and to let them know that only your healthcare proxies will make healthcare decisions on your behalf.
The Role of Your Healthcare Providers
The final action you can take to make the responsibility easier on your proxies is to discuss your wishes with your healthcare providers. This discussion should occur with your primary care physician, all of your specialists, and the medical staff at the assisted living community (if you live in one). Make sure to schedule appointments to talk specifically about your advance directive. Be clear about your goals, your values, what is important, and what you won't accept. Provide the doctor with a copy of the advance directive to put into your file. If you are ill, you should also have a POLST/MOLST on file.
You can take many actions to ensure your medical choices are understood and respected. I believe the most important one is choosing the right healthcare proxies. An advance directive is a legal document that is easy to disregard, but having an advocate to speak for you when you cannot is more challenging. While there are no guarantees, the steps mentioned in this article will go a long way toward ensuring your decisions are your own.
Thanacare
Thanacare is a fantastic resource to complete advance care planning. Their trained nurses and goals of care advocates can help you have advance care conversations. Schedule time with Thanacare.
Comforting Closure
Traci Arieli is an end-of-life doula and grief coach whose mission is to normalize conversations about aging, dying, and grieving. You can find out more about heron her website, www.comfortingclosure.com. You can also learn more about advance directives through her podcast, Comforting Closure—Conversations with a Death Doula. You can learn more and find Traci’s multimedia here.
In-Text References
· Driggers, K. E.,Dishman, S. E., Chung, K. K., Olsen, C. H., Ryan, A. B., McLawhorn, M. M.,& Johnson, L. S. (2022). Perceptions of care following initiation of do-not-resuscitate orders. Journal of Critical Care, 69, 154008. https://doi.org/10.1016/j.jcrc.2022.154008.Accessed 12 Sept. 2024.
· Casarett, D. J.,Stocking, C. B., & Siegler, M. (1999). Would Physicians Override a Do-Not-Resuscitate Order When a Cardiac Arrest Is Iatrogenic? Journal of General Internal Medicine, 14(1), 35-38.https://doi.org/10.1046/j.1525-1497.1999.00278.x. Accessed 12 Sept. 2024.
· Brindley, P. G.,Markland, D. M., Mayers, I., & Kutsogiannis, D. J. (2002). Predictors of survival following in-hospital adult cardiopulmonary resuscitation. CMAJ:Canadian Medical Association Journal, 167(4), 343-348.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC117846/. Accessed 12 Sept. 2024.