Choosing a Healthcare Representative
What is a Health Care Representative (HCR)?
A health care representative is the individual you appoint to make medical decisions for you if (and only if) you are physically or mentally unable to do so.
A health care representative can also be called a “health care proxy” or a “surrogate” in some states. Regardless of what they are called in your area, this individual is legally empowered to direct your medical care wishes if and when you are incapacitated. For example, if you are placed in a medically induced coma, your representative will automatically become authorized to speak on your behalf. Furthermore, they will automatically lose that authority when you return to consciousness and are able to make decisions on your own.
Why do I need one?
An individual is never more vulnerable than when they are in a serious medical condition. Literal life or death decisions need to be made, and sometimes they need to be made immediately. During and immediately following surgery, even a competent individual is not able to give voice to their wishes. Accidents, acute medical illness, or other traumas may unexpectedly render a person incapacitated. Your healthcare representative knows you and knows your values. They are familiar with your Advance Directive and will be able to ensure that your medical treatment is in accordance with what you would want if you were able to direct your care. Without an HCR, it is very likely that medical staff will err on the side of aggressive life sustaining treatment, including putting a patient on a ventilator, inserting a feeding tube in to your esophagus, and other means of artificially keeping your body alive.
What are the qualities of a good surrogate?
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A good surrogate shares your values. This includes a willingness to commit to enforcing your values. If you want aggressive treatment under all circumstances, your representative must be willing to demand it and monitor your receiving it.
Conversely, if you want chemo treatments stopped when you are no longer mentally competent due to a stroke, your representative must be morally and energetically committed to ensuring this.
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Availability. Your representative must be reachable at all times. If a crisis occurs in the middle of the night, the medical staff needs to reach your HCR to determine what interventions, if any, are acceptable. If an individual travels frequently, silences their phone at night, does not have a cell phone, etc., they may not be a good choice.
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Assertiveness. Your health care representative must be willing and able to stand up in opposition to a suggested medical procedure if it is not in accordance with your directive. If they are a relative or close friend, they may be made to feel guilty for not supporting life sustaining treatment. A doctor may say: "Do you really want to kill your father rather than let him live a little longer?" This is an unacceptable attempt to pressure the HCR. What matters is what the patient’s wishes were regarding “extra” days of poor quality.
Surrogates must also be able to deal with family and friends who may have differing opinions on what should be done. In this scenario, dialogue is appropriate. Close family and friends should have an opportunity to tell the representative their perspective. But at the end of the day, the representative is the one entrusted by the patient to carry out their wishes. That designation conveys legal authority and cannot and should not be allowed to be overridden by other individuals.
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Knowledge. A healthcare representative is usually not a medical professional. They will need to ask appropriate questions so they can make an informed decision. Questions may include: What is the expected benefit of a procedure? What are the possible adverse effects? Can the procedure be stopped if the benefits are not realized? These are the kinds of information the representatives needs to obtain to make an educated decision.
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Communication skills. At the most basic level, a health care representative must be able to understand what medical professionals are telling them and respond effectively. If language barriers or hearing issues are present, strategies must be in place: finding a translator, communication by text, etc. But communication skills go beyond this basic level. A representative must be able to ask pertinent questions and persist until they understand the issues. They must also be able to effectively present the patient's wish in a respectful but resolute manner. They should know when and if it is time to involve a third party such as an elder law attorney, the hospital's patient advocate, a palliative care specialist, etc.
Where do I find a good surrogate?
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Given the many attributes of a good health care representative, it can be difficult to find a suitable one. It is important to remember the obvious, or most traditional choice, may not always be the best one. A spouse may not be physically up to the task. Similarly, the oldest child may not be as geographically available as a younger one. A friend can be an excellent choice if they have the right attributes and are willing to commit to such a large responsibility.
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If there is no appropriate person, it may be wise to consider hiring a professional health care surrogate. There are both doulas and social workers who have specialized training in this role and in more complicated situations, an elder law attorney may be employed.
Although an additional cost, it may be worth considering this option to relieve emotional burden from your family. A spouse or child may morally support a patient's decision, but perhaps this role is a better fit for someone who will be less taxed by grief.
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Once you have selected your HCR, let family and friends know who it is. Do not put your representative in the position of having to tell family members at a time of crisis that they will be the one making the decisions.