INTRODUCTION  

“Like Goldilocks who tested the three bears porridge until she found the one that was just right, everyone’s ‘just right’ is different” — Dawn Franks.

In August 2024, I wrote about how to choose a healthcare proxy. This time let’s review what to consider if you are asked to be a healthcare proxy for a loved one or friend — who I will call “the principal.” What are the legal implications, what responsibilities are incurred, and how does one prepare for this role?

As a proxy, you are being asked to make medical decisions if and when the principal is unable to participate. Making decisions about what might be too much medical treatment, not enough medical treatment or medical treatment that is “just right” presents a Goldilocks — type dilemma.

This concept applies to many aspects of life when looking for the right balance and trying to avoid extremes in any direction. Here are some resources and guidelines about how to be an informed and effective healthcare proxy.  

LEGALITIES  

In Rhode Island a healthcare proxy is called a Durable Power of Attorney for Healthcare (DPOAHC). Someone designated as the proxy has the “authority to consent, to refuse to consent, or to withdraw consent to any care, treatment, service, or procedure to maintain, diagnose, or treat a physical or mental condition.” The Rhode Island DPOAHC document also allows for 2 alternative proxies to be added should the primary one be unavailable.

The DPOAHC authority is invoked when it is determined that the principal has lost medical decision-making capacity and allows the proxy to access all medical records and to have direct communication with the medical team. If there is no designated DPOAHC, a person might still become a legal surrogate or a medical decision maker by default.

Typically, the responsibility for medical decisions would go to a spouse, adult child, parent or adult sibling in that order. A court appointed guardian can also make medical treatment decisions for their ward. 

WHAT YOU SHOULD KNOW   

When a proxy needs to make medical decisions, they should be guided by the question: “If this individual could speak for themselves now, what would they want?” To be an effective proxy, it would be helpful to have ongoing, open, and honest conversations about the wishes, values, cultural and religious beliefs of the principal. 

What are their opinions about certain medical interventions such as: antibiotics, resuscitation, intubation, artificial nutrition and hydration or pain management?  What are their wishes regarding end-of-life care? Would they prefer an emphasis on quality of life versus quantity? Listening to stories about previous experiences the principal has had with serious illness or dying may help illustrate the type of medical care they would or would not want.  Communication about these topics is the best way to prepare for future medical decision making.  

The Conversation Project® is a public engagement initiative of the Institute for Healthcare Improvement, a not-for-profit organization. Their goal is “to help everyone talk about their wishes for care through the end of life, so those wishes can be understood and respected.” As the name implies, their website is full of resources to support having these important conversations, including a guidebook titled “Your Guide to Being a Health Care Proxy.” It offers helpful prompts about how to plan a talk, start a talk, and keep talking. Gathering information prior to a crisis about the principal’s preferences and values provides a compass for future medical decisions.   

RESPONSIBILITIES

It is important to stay current with the principal’s medical status, medications, and advanced care documents and to keep copies. Their preferences for medical treatment may change as an illness progresses and certain situations may require a quick decision. Be familiar with any additional legal documents (DNR, MOLST), important contact people, and where to go to with your questions: the nursing staff, physicians, social worker, discharge planner, or chaplain.   

The American Bar Association Commission on Law and Aging recommends that in a crisis, the proxy should focus on gathering the facts, understanding the options, and then making decisions on what they think the principal would do and what is in their best interest.  

In addition, they emphasize that the proxy needs to be visible, be informed, be involved, and be heard. Being heard requires the ability to speak up, ask questions, and be an advocate. Maybe a second opinion, a care plan meeting, a change of healthcare providers and/or healthcare facility is needed. 

Should the principal be hospitalized, then ideally their proxy should be at the bedside. If there are financial implications regarding certain options, the proxy does not have the authority to make financial decisions. That would require collaboration with the financial power of attorney or other appropriate individuals.  

SOME WHAT IFS?  

Even with conversations and advance care documents, it is not possible to cover all the scenarios that might occur during a serious illness or medical crisis and the resulting decisions that a proxy may need to make. Difficult and unexpected circumstances often come up. Maybe the principal indicated that they would be willing to accept all life sustaining treatments and yet a proposed surgery or potential resuscitation could result in more harm than good and cause unneeded suffering.    

The principal may have hoped to stay in their home and never be placed in a nursing home. When the time comes, however, that may not be a safe or feasible plan and placement in a healthcare facility (nursing home, hospice) might be unavoidable.

These and other situations could lead to disagreement among family members. As a proxy, you need to be able to stay focused on what is in the best interest of the principal and find the balance that is close to “just right.” Things may not always be tied up with a bow. Only through trial and error did Goldilocks find the best bed, chair and porridge.  

If approached to be a healthcare proxy, before accepting this role you should pause. Being asked indicates a significant degree of trust in your judgement and ability to communicate. Would you be comfortable discussing advance care directives, and sensitive issues around medical care and end of life with this person? Would you be able to collaborate and communicate with the healthcare team during stressful or emotional times? If a family conflict should arise, how might you navigate this? 

It is ok to say no if you are not going to be available, the responsibility is daunting, or you would have difficulty supporting the preferences of the principal due to your own differing opinions. If you are able to accept this responsibility with the trust and respect it implies, then start talking and keep talking.  

Bonnie Evans, RN, MS, GNP-BC, GC-C, lives in Bristol and is a geriatric nurse practitioner, End of Life Doula, and certified grief counselor. She can be reached at bonnie@bonnieevansdoula.com.