Establishing a Healthcare Proxy

Choosing a health care proxy is an important decision. In addition to being over the age of 18 (as required in most states), the person you choose should be someone you trust to carry out your wishes even when they may not agree with them. For example, you would not want to appoint a health care proxy whose religious beliefs would prevent them from following your wishes at the end of your life (for example, terminating life support). Similarly, choosing someone with whom you have strong emotional ties, such as a spouse, a child or even a parent, may not be the best idea since their emotions could cloud their judgment when making difficult decisions about your medical care. 

Generally, the person you choose as your health care surrogate should be someone who knows you well and understands your values and core beliefs, such as a relative or a good friend. They should also have the following qualities:

• Calm in a crisis: If you are seriously ill, your condition may change minute by minute, so your surrogate should be someone who can make decisions quickly under stressful circumstances.  
• Comfortable advocating for you: Your surrogate should be someone you believe will be comfortable advocating for your values if your doctors propose a treatment course you would not want. 
• A good communicator: Your surrogate may need to act as a liaison between the medical team and your family and friends, so they should be someone who can facilitate difficult conversations with tact and empathy.
• Comfortable asking questions of medical staff 
• Live nearby or able to travel to you if needed

You may be tempted to ask several people to act as surrogates for you, but this is almost always a bad idea, warns Dr. Dawn Gross, a palliative care physician at UCSF Health. According to Gross, appointing more than one person can create conflict and additional stress at a time that demands clarity and calm. With that being said, you may wish to designate alternate surrogates (also known as successors), who can make decisions on your behalf if your first choice of surrogate isn’t available. Just be sure to clearly indicate which alternative is your first, second and even third choice. 

Sources

“About Your Host, Dr. Dawn Gross.” Dying to Talk Podcast. https://www.dyingtotalk.com/about-us 

After choosing a healthcare proxy, it’s important to talk with them about your wishes in a specific way. This can be challenging, especially if you are still relatively young and healthy and have little experience with being ill. We have found that one way to guide the conversation is to discuss your values, goals and fears. These values-based questions may help you begin. 

• What do you fear will happen if you can’t make decisions for yourself?
• Do you have any particular fears or concerns about the medical treatments that you might receive? 
• What are your views about artificial nutrition (food) and hydration (fluid)?
• How do you define quality of life? 
• What makes your life worth living? 
• What would you not want to live without? 

You may also want to talk about specific situations that might arise. For example:

• If you were badly burned in a fire, would you want to be kept alive by artificial means, even if you would be permanently scarred if you survived? 
• If you were unconscious from a severe head injury and unable to breathe on your own, would you want to be maintained on a ventilator in a skilled nursing facility for the rest of your life? 
• If you had a massive stroke and could no longer walk or speak, would you want doctors to try to prolong your life? 
• If you were living with dementia and could no longer swallow, would you want doctors to institute tube feedings to keep you hydrated and fed?

These are difficult issues to think about. But the more frankly you discuss them with your healthcare surrogate, the more likely it is that your wishes will be honored when you can’t communicate them yourself.

A health care proxy makes medical decisions for a person who is very ill, unconscious or mentally incapacitated. According to LawHelp.org, a proxy or surrogate is required to act in good faith and follow an individual’s wishes when those wishes are known. 

Some decisions a health care surrogate may make on a patient’s behalf include:

• Whether to admit or discharge them from a hospital or nursing home
• Which treatments or medicines they do or do not receive
• Electing care and support options such as hospice or palliative care
• Whether to institute or discontinue life support 
• Whether to donate organs or tissues after death

A health care proxy also has the difficult job of advocating for the patient with health care providers. This can be especially challenging in situations when medical decisions are not clear-cut. For example, a patient who has a life-limiting illness such as cancer may be doing well clinically when a sudden infection causes them to become gravely ill. At that juncture, the health care team might think that a short stay in the ICU on a ventilator would allow the person to return home and enjoy a good quality of life for quite some time. But family members might feel strongly that being on a ventilator is not what the patient would want. Further, it’s unlikely that an advance directive or even a POLST would address this exact scenario. So the surrogate would be charged with making the decision they believe the patient would make themselves. 

Patients, or, more often, their surrogates, have a number of options when these types of disagreements occur. According to the National Institute on Aging, these include requesting a consultation with the hospital’s palliative care team, who can help guide the discussion about long- and short-term prognoses and goals of care. Family members may also request a consultation with the hospital’s ethics committee, a group of health care professionals who are not involved in the patient’s care and can help resolve conflicts while ensuring that the patient’s rights are respected and their needs are met. If the surrogate is having difficulty getting these consultations or needs additional help, they can contact a hospital representative such as an ombudsman or administrator. 

Sources“Making Decisions for Someone at the End of Life”. National Institute on Aging. https://www.nia.nih.gov/health/end-life/making-decisions-someone-end-life