In modern health care, everyone from students to seniors will face a variety of health care decisions. Care providers know the importance of patients being informed about their choices, and we have seen how a lack of affordable and accessible services can sometimes prevent a person from getting the care they want or need. Health care can be a very personal and intimate part of life. Deciding on the right medical treatment can be complicated. Being sick or injured can be emotionally difficult. Being part of a medical crisis involving a family member or friend can be just as tough. You may lose the ability to choose your medical treatment if you do not plan for a future when you may lose decision-making capacity. Naming a health care proxy means designating someone you trust to decide about your medical treatment.
The rest of this essay is divided into three sections. Part Two outlines legal definitions of key terms. Part Three discusses what you will have to do to appoint a health care proxy, and who the actual individuals are that you must choose, according to the law. Part Four outlines advanced steps you might want to take to be sure those you appoint as your health care proxies understand your wishes as well as possible. Lastly, finding a health care proxy offers information about where to get health care proxy forms and who to contact if you need more help. Many people develop diseases or conditions that impair their ability to think and reason. Even more tragic is losing control of your mental capacity when a decision also involves which, when, or if life-sustaining medical treatment should be withdrawn from you.
What is a Health Care Proxy?
A health care proxy is an individual who makes personal medical choices for another person if that person is unable to communicate their medical wishes themselves. This role may involve following a formal document, as is the case in areas where a health care proxy is required by law. In areas where a formal document is not required, a health care proxy is often chosen by default to reduce disputes from others who believed themselves to be the person’s decision-maker. The main reason for a health care proxy is to ensure that the patient’s medical wishes are carried out when the patient has lost the ability to communicate. People of any adult age can lose the ability to communicate either due to advanced age, head injury, Alzheimer’s, or another form of dementia, mental illness, severe developmental disability, or stroke.
For a health care proxy to hold any legal power, the following must happen: (1) the patient must meet the legal requirement for incapacitation, and it must be confirmed by one or more healthcare professionals, (2) the appointment must meet federal and state requirements for legal appointment of a health care proxy; otherwise, it will not be recognized in court, and (3) the patient must tell everyone involved what they want, including telling the health care proxy and the doctor. All states offer a standard health care proxy form. However, two individuals’ wishes for health care often do not neatly fit onto a standard form. Each state also has the option for residents to write out their reasons for making a health care decision in a separate document that is only made legal if it is attached to the standard form.
Definition and Purpose
A health care proxy is an agent with authority to make medical decisions for an individual, referred to as a “principal,” when that individual becomes incapacitated. Since any of us can face the likelihood of becoming incapacitated at some time, no matter how brief, all are potential principals who may need someone else to make medical decisions on their behalf. A well-crafted health care proxy allows one to exercise a basic aspect of freedom – choosing who will make medical decisions in these circumstances. The appointment of a health care proxy allows one to choose – place authority in – a person who knows the principal well enough to understand and advocate for the principal’s medical decisions. Appointed decision makers, or “proxies,” have authority to make decisions when the individual for whom they are to make decisions is incapacitated. Empowering one’s proxy to make decisions generally, without subjecting those decisions to requisite values criteria, provides these benefits. Proxies can be trusted to apply known patient values, preferences, and life ethics to new medical decisions; patients usually trust their proxies to assimilate enough of their values over time to speak authoritatively to new decisions. ‘Triggering’ a proxy’s authority only at the point of incapacity allows the principal to make the last decision herself if possible – at a time when the majority of proxy-appointed decisions come, such as before foreseen end-of-life or other major decisions. Hence, the appointment of a proxy is considerably more restrictive than ‘enduring’ appointment conferred by a springing power of attorney, where the agent may act to support the principal at all times, whether or not the principal chooses to intervene.
Legal Aspects
Legal Aspects
A few state and federal laws describe the process of appointing a health care proxy legally. The Patient Self-Determination Act requires most health care providers to explain to patients on admission to a health facility their medical treatment and patient rights. They must inform the patient about a state-provided advance directive form and about any health facility policy withholding or withdrawing life-sustaining treatment. A proxy is appointed using two documents—Durable Power of Attorney for Health Care and Advance Directive (the state’s suggested form). Some people use the term “health care proxy” interchangeably with “durable power of attorney for health care.” The principle in “durable power of attorney for health care” and “health care proxy” is the same.
Although many states accept health care powers of attorney executed in other states, the medical providers are bound by the law of their own state. It is essential, therefore, that the original and all copies of the durable power of attorney for health care, witnessed by two persons and/or notarized, include the addresses and phone numbers of the appropriate health care givers under state law. The person you appoint may have his or her authority to decide your medical treatment questioned or denied in certain matters. A more detailed explanation for those who want to appoint a surrogate to make health treatment decisions and wish direction on several topics includes any religious and moral beliefs, the appointment of a guardian, and so forth, and also allows for the designation of co-surrogates. Because the issues become more complex, some individuals may want to consult an attorney in drafting their advance directives. Some people believe that health care proxies and power of attorney for health care are different from a living will, while others do not. A living will may say that you do not want it to be used under certain conditions or with certain diagnoses. It is used by some attorneys in the physician’s office or other kinds of advance directives. The hospitals usually want witnesses.
Why is Having a Health Care Proxy Important?
Having a health care proxy or durable power of attorney for health care means designating someone you trust to make medical decisions if you are unable to do so, enabling your surrogate to respect your healthcare choices and wishes. It allows you to retain a sense of control while also providing your loved ones the reassurance that they are adhering to your wishes. Having a health care agent reduces the emotional burden on your relatives and close friends who genuinely want to help during a health scare or healthcare anxiety. Hospitals, doctors, and other professionals recognize the authority of your representative. Short-term emergencies like surgery or illness and long-term events like incapacity can also present various scenarios that make choosing a health care agent crucial, allowing you to better understand the role of a health care proxy. In one case, a father-in-law lost mobility due to Parkinson’s disease. Although he was fully cognizant, he could not operate his personal assistant. He had no documents that would allow his adult children to engage with his doctor about exactly what his concerns were and how they could aid in driving his care to coincide with his desires. Too many families are compelled to make difficult health care choices without understanding what their loved one’s choices are. Such discussions arise only when the individual has been incapacitated and is unable to express their demands. Advance preparation before a health scare will help you break the silence. In every case, family dynamics are different. Various individuals within the family may or may not be cooperative in the event of discussions and argument resolution. It is important to examine what goes on at these conferences. They can occasionally be beneficial, but they can often lead to a quarrel, lack of exchange of knowledge, and non-resolution of the problem. In these cases, they encounter the “astonished emergency.”
Benefits of Having a Health Care Proxy
There are numerous benefits to designating a person to make health care decisions for you. A health care proxy empowers you to express your health care wishes and ensures that they will be honored, even if you are no longer able to do so. It serves as an advocate and voice for you so that your family and health care team are aware of your wishes. During high-stress and emotional times, a health care proxy or agent can alleviate the pressure and tension that often occurs between family members. Your proxy can communicate to your doctors and other health care providers about your medical condition and options, ensuring that the wishes you’ve expressed are carried out. Having someone make decisions who knows you, your values, and your beliefs provides a sense of satisfaction and allows you to be confident that decisions are being made in your best interests.
You are encouraged to consider the manner in which this situation can exacerbate decisions and disagreements and consider a proxy that can indeed facilitate communication between the family and the health care treatment team. As mentioned, the health care proxy is appointed and empowered by you in your legal document to make decisions based on their understanding of your wishes or what they think you would like. It is not a general grant of authority to override or disagree with your desired care or to impose their thoughts, values, or interventions on you. A proxy must make decisions consistent with your values and documented, expressed preferences. In the event that an individual is unable to communicate, a proxy acts on behalf of the person and must communicate fully to the health care team if someone objects. You can limit the authority of a health care agent through your instructions. Whomsoever is appointed by you may be called a patient advocate, health care power of attorney, or health care representative.
Potential Scenarios
Scenario 1: Imagine… You are a passenger in a terrible car accident. You are transported face down on a stretcher and can’t move your neck. In the ambulance, you start to feel lightheaded and confused. Your speech is slurred. In the trauma bay, the nurse asks you for a urine sample and a toxicology screen. All you want is for someone to call your wife to come be with you while they figure out what’s going on. Within a few minutes, you’re too woozy to remember what you want to say, let alone explain it to doctors who keep asking you if you always talk like this. Scenario 2: Imagine… Your mother undergoes chemotherapy for her aggressive cancer. You feel queasy just watching the poisons drip into her veins from the IV pole. Although the treatments are helping keep the cancer in check and giving her a bit more time with family, they are also weakening her other organs. You should know. You are a nurse. The specialist suspects the cancer has spread and says it’s time for more thinking and talking about next steps. You can’t imagine what those treatments and interventions look like. Which is a better match with your mother’s hopes for the future? What can she understand? What would she want? Situations like these are complicated. Multiple elements may include a difficult diagnosis, terminal illness, or severe medical emergency. Wishes and outcomes can be hard to predict. Having a health care proxy in place may provide an option when you can’t have what you want, or when you’re not sure what that is. In many cases, the person you would want as your proxy is a spouse, partner, or adult child. What do they need to consider? Is more than one family member the right fit? What person knows you well enough to speak for you if you can’t speak for yourself? You’ll need to move quickly in an emergency and maybe during the night. It’s important that you and your proxy are on the same page… if you get to choose. Consider the scenarios presented. Can you envision a personal medical crisis that might end with you being unable to tell doctors and family members what you want or when you might not know? A health care proxy is the person you have chosen to help navigate those potentially scary or confusing situations.
How to Choose a Health Care Proxy
To be sure they have chosen the right health care proxy, there are three essential questions you’ll need to ask yourself along the way that correspond to distinct, essential steps in the selection: “Can I trust this person?” “Can we talk?” and “Do we see eye to eye, based on our shared values?” If you cannot affirmatively answer all three questions throughout the process, you may want to continue your search or talk to someone from a genetics center or clinic. Remember, once you make your decision, it’s not enough to just inform the person of your decision; you will need to prepare him or her for the job through very honest conversations about death, dying, and what you really want.
Many people choose their spouse, their oldest child, or another family member whom they trust. Others choose a non-family member; some people choose their oldest and/or closest friend. This isn’t all that unusual. The person doesn’t have to be beside you, close by, or even in the same state in order to make decisions about your care. The role of a health care proxy requires a strength of character perhaps uncommon in most people; the capacity to act without knowing all the facts, and most importantly, the willingness to make the worst kind of decision at a moment when one’s thinking is unclear. The strength required comes from trust and commitment, and it is built over time, starting with a series of very frank conversations about the person’s health care wishes and the responsibilities of being a health care proxy. Familiarity with your wishes and values can help ensure that the decisions represent what you want, not what the proxy wants.
Criteria to Consider
When choosing a health care proxy, many people view trustworthiness as the most important factor. Whom would you trust to make a decision about your health care that could mean life or death, everything to you? Whom do you feel comfortable talking about these kinds of decisions with? Can you trust that this person will listen when you need her to listen and be assertive for you when your doctor may wait for that ‘next treatment’ that you do not want? Are they creative and can they get at your unstated values when the going gets tough? You may need someone who can listen not only to your expressed decisions but can also get at the ‘why’ of what you are saying and better advocate for you. Is your proxy effective in advocating for herself? Has she advocated for others, learning from the feedback she has received along the way? She might need to call on those skills to advocate for you when something that goes totally against your framework comes up, even if you can no longer communicate what is best for you.
So, ask yourself: Who has the sense of me and my values and would be able to demonstrate empathy with me? Would they take the time to understand what I am trying to communicate? Watch what he does with his patients. What is his relationship with those he serves? Ask also: Is this the sort of thing she would want for herself? Will this be an incredible burden or source of joy to her? A source of anxiety or a welcomed challenge? The point is, these are subjective criteria, and only you can be the judge in this matter. That means you have to talk with this someone about your values, your agent/health care proxy paperwork, and your health care wishes before you ask him or her to represent you in all settings. Would she be willing and able to ask your health care professional about your medical situation, getting as much information as she feels she needs from your doctor in order to make informed decisions? If you can ask someone who meets all of these criteria to be your health care proxy, to serve on your team of advocates, ask if she would be willing to take on this important role. Will he really do what is best for you even if it is hard for him or if he disagrees with your value basis? In other words, for your best interests?
Having the Conversation
It is important to talk about these decisions with the person who will be your proxy in case it becomes necessary. This is the best way to make sure they understand your values and preferences. Most people want their proxy to be able to consider what they would want. The best way to help your proxy with this task is to tell them what you would want; this conversation can be a part of that. Sometimes these are tough topics to bring up. Finding a comfortable place to talk, sitting down for a one-on-one conversation, and expressing gratitude and the deep care you have for the person can help make for a powerful and honest discussion. What to Discuss. One of the big reasons to have this conversation is that most proxies say that they weren’t able to talk to the person who chose them before making decisions. But it’s important to remind them about these tasks and support them in these roles by being upfront. You should discuss with your proxy the kinds of therapies that you find acceptable, those which are unacceptable, and when to shift from focusing on medical treatment to taking care of comfort and likely end of life. In short, what treatments are acceptable to you? What treatments are not? When should a change in medical care be made? You should also familiarize your proxy with some of the medical scenarios that they may find themselves in the middle of. These can be very easy to sketch out, be very detailed, or anything in between. The bottom line is, once you are done discussing these things, your proxy should have a very good idea of what you would want so they can explain to your health care team what they believe you would want. Update your proxy regularly on your thinking about these issues as your life circumstances change. The health care proxy law says that you will be sure that the person you choose to be your health care proxy knows your thinking if you write this document. Tips for telling a proxy what you want. When someone communicates their health care goals and desires to a chosen proxy, other health care professionals are in a much better position to advocate for the patient’s right to receive the care that they would have wanted. The following are some suggestions on how to communicate your health care goals and desires effectively: • Don’t be vague and general. • Be specific: If you think it’s best for someone to make decisions about a specific condition or diagnosis, be clear on the document that those are the decisions you wish to allow the proxy to make. • Be clear on what is important to you medically and in your day-to-day life. • Specific guidance trumps general suggestions such as “do what is best for me.” • The clearer a proxy is on what you may want, the more they can advocate for you when you cannot speak for yourself. • You don’t need to write a long statement about all treatments, but clarify your thoughts about the treatments you would be worried would be used against your wishes, especially be clear on wished-for limitations on aggressive care. This protects you from having treatments used that might not fit with your values at times when you are not able to speak for yourself. It is important to revisit and update your Health Care Proxy document as your life events and feelings change. This may mean sitting down with your proxy and adjusting the document once a year or anytime your personal or health situation changes. This may mean making changes to other documents as well. Your selected proxy should be supportive of you when you choose to do this as this is an important way for them to learn about your ongoing health care wishes. If the proxy believes it is not safe for the individual to act as a health care proxy, the proxy should file a statement with the individual’s health care provider.
Your health care proxy is the communications link who explains and, when necessary, defends your health care instructions when you are unable to speak for yourself. Your health proxy does not speak for you personally or interpret your wishes; she merely communicates your instructions. The most important advance health care steps are: identifying a health care proxy and designating her in writing; and having continuing connections about your health care wishes. You must name a health care proxy at the same time as preparing written directions, or in place of planning written directives. Appointing a health care proxy is a type of definitive health planning that need not depend on reporting, cases, or law-making in your local or state jurisdictions. Consider asking your proxy concerning your health care instructions during periodic conversations. When chronic or acute illnesses make you very ill, your decisions may be understandable only as medications, pain indicators, and symptoms replace disease terms. Ongoing discussions will help your proxy to comprehend when and how to promote treatment options that are consistent with your wishes. Once you have named a health care proxy, it is important to let your proxy know what medical treatments you would or would not want in the same event you have a medical crisis. Your instructions need to be communicated to your health proxy in unambiguous, direct expressions. Even more vital is to ensure your health proxy knows why you feel the way you do. Clear medical decision-making instructions, complemented by explanations, will allow your health proxy to defend your choices to health care providers and medical examiners. For most people, indicating treatment preferences is only half the health decision-making job. A trusted health associate can provide a variety of other essential emotional and practical assistance, especially when you are ill. It is a decision that is uniquely private, depending on personal principles predicated on privacy, family relationships, religious and cultural beliefs, and perceptions of healing and dying. In conclusion, it is recommended that a health care proxy be chosen to assist in your medical planning. Not only can it bring you inner peace, but it can also save you from avoidable stress and prevent further thwarting of planning by ensuring that your future needs will be satisfied. Health selections made today will have a continuing effect on great treatment decisions for you in times of sickness.
