If you become incapacitated, either by a sudden accident or by the onset of a mental disability, someone will have to make your medical decisions that affect your well-being and perhaps even your life.
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There are only two ways someone who is incapacitated can have input on their own medical decisions:
- Having an advance directive. You can invoke your own decisions through an advance directive, which may include:
- A living will
- A medical power of attorney
- Not having an advance directive. When you do not have an advance directive in place, someone else, called a “surrogate,” will have to serve as your decision-maker. This surrogate is not someone you choose. A surrogate could be a:
- Court-appointed legal guardian
- Spouse, family member, or friend
- Hospital ethics committee
- Personal physician
If you want to have some control over your medical decisions if you become incapacitated, you should have an advance directive in place.
If you do not have an advance directive and become incapacitated, someone else will make your medical decisions for you, and it may not be the person you want to make your decisions. It may not even be someone you know.
If There’s an Advance Directive
Whether you are young or old, healthy or ill, active or inactive, you could become incapacitated at any time. This could occur suddenly and unexpectedly or gradually over time. For example:
- You could be involved in an accident after which you are unconscious or remain in a long-term comatose state.
- Something could go wrong during a medical procedure for which doctors may need consent to treat you.
- You could be experiencing a normal mental decline that gradually leaves you incapacitated or unable to make your own decisions.
You probably want to have input into the important medical decisions that may affect your treatment or care. If any of these circumstances occur, a healthcare provider may have to make decisions when you are not able to indicate your wishes. Therefore, you will need an advance directive in place that clearly indicates your preferences.
There are two common forms of advance directive — a living will and a medical power of attorney. These are very different instruments but can assure that your medical decisions are carried out the way you want.
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A living will
A living will is an instrument that states your preferences for a variety of possible treatments or procedures that physicians may have to perform, depending on your medical circumstances.
Usually, these are things that physicians only have to decide in an emergency, most often when you are unconscious or incapacitated. These decisions may include:
- Whether you want your physician to perform life-sustaining procedures if they should become necessary. These could include things like:
- Tube feeding, which may be necessary to provide you with food and hydration necessary to keep you alive.
- Use of an automatic ventilator, which may be necessary if you are not able to breathe on your own.
- Cardiopulmonary resuscitation (CPR), which may be necessary if your heart stops.
- Use of antimicrobial or antibiotic treatments that may be necessary to fight any infections, even though you may be terminally ill.
- Whether you want your doctors to remove you from artificial life support if you become irreversibly brain dead or if you prefer your doctors to continue using such methods until you die naturally from your heart stopping.
- How long you want your doctors to artificially keep you alive if you show little or no hope of improvement.
- Whether you want complete palliative care or pain relief treatment, even if it means you may die sooner than you otherwise would without the pain relief.
- Whether you want to donate organs after you are deceased or donate your body to the benefit of medical research.
- Whether you want to be buried or cremated.
All of these are decisions that, if you had made them prior to becoming incapacitated, may have saved your doctors a lot of time, saved you a lot of pain and suffering (or saved your life), and protected your loved ones from the immeasurable anguish and stress of having to make these decisions for you, especially if they aren't sure that they're deciding the way you would have decided.
You can avoid all of these consequences by creating a living will so you provide your preferences for these unforeseen circumstances. Each state has specific forms that you can fill out to indicate your wishes. Because each state may have its own rules and procedures for answering these questions and carrying out your wishes, it may be best for you to use the living will form specific to your state.
However, any wishes that you clearly convey to your medical care provider in writing will be legally binding, unless your doctor has some legal or ethical reason for not carrying out your wishes.
If you do use the standard forms that are required in your state, be sure to include on the forms (or supplement the forms) any specific issues or medical decisions that you want to be carried out, even if they are not included on the form.
The forms are generally applicable forms designed for accessibility and easy use. You should include any and all medical decisions that you want to be honored.
As with normal wills, most states require that the forms be witnessed or notarized. You do not need an attorney to have a valid living will, but you must be sure to follow the rules and procedures required in your state.
A medical power of attorney
A medical power of attorney is another form of advance directive that enables you to direct your doctor on how to proceed with your medical care when you are incapacitated and you do not have a living will in place.
The important difference here is that instead of providing your own decisions about specific medical treatments and procedures, you appoint an agent to make medical decisions on your behalf.
Creating a medical power of appointment, which can be used in conjunction with a living will, is a more flexible way of making sure your wishes are carried out. It may seem that leaving your end-of-life decisions to someone else restricts your ability to offer your own input.
However, if you choose the correct agent to represent your wishes, then this becomes a broader, more flexible method for stating your preferences because it legally authorizes your agent to make decisions on your behalf for any medical issue or question that may arise, rather than just the limited issues that you addressed in your living will.
When you choose your agent in your medical power of attorney, appoint someone with attributes that will be necessary to see that your wihes are carried out. It’s imperative to appoint someone who’s:
- Trustworthy. You will want someone who you can trust to make your wishes known, even though what you want may not be what they want for you. Often, a spouse or child may find it difficult to make the decision to remove you from life support or to deescalate life-sustaining procedures. You want someone who will be capable of making these difficult decisions the way you would decide them for yourself.
- Familiar with your wishes. It’s no use having someone make your decisions for you if they don’t know what decisions you would make. You must choose an agent who knows you well and with whom you have spoken about these issues. You must choose someone who will be able to put their own feelings aside and insist that your wishes be carried out, even if it is contrary to their own wishes.
- Always appoint an alternative agent in your medical power of attorney, in case your primary agent predeceases you, is not available or is unable to serve in this capacity for any reason.
As with a living will, your medical power of attorney must be in writing, signed or notarized, and in accordance with any other requirements of your state.
You should provide your advance directive — either your living will or medical power of attorney — to your medical provider, your family and close friends, and your own attorney if you have one.
If You Don’t Have an Advance Directive
Research published in the “New England Journal of Medicine” shows that 40 percent of adult medical inpatients and residential hospice patients are incapacitated. Of patients in intensive care units, more than 90 percent cannot make their own medical decisions. However, according to the “Journal of the American Bar Association Commission on Law and Aging,” two-thirds of all adults have no living will or medical power of attorney.
For patients who are incapacitated and have no advance directive in place to state their preferences for medical decisions, there are two options — a court-appointed guardian or a surrogate decision-maker.
A court-appointed guardian
If you become incapacitated and do not make your own medical decisions through an advance directive like a living will or medical power of attorney, then the court may appoint a legal guardian to make any necessary medical decisions for you. This is usually not a desirable or practical option because a court-appointed legal guardian:
- Probably won’t know you or anything about you.
- Will necessarily make decisions based on their preference for you, rather than on your stated wishes.
- May be more likely to dispute with family or friends who know what you probably would prefer.
- May be expensive.
- May not always be available.
Because a court-appointed guardian is not usually the preferred method of medical decision-making for incapacitated persons, all states have incorporated default provisions for surrogate decision-making for incapacitated patients.
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In almost all states, there is a default surrogate statute that allows a physician to rely on the input of someone other than the patient to make the patient’s medical decisions. These statutes prioritize a ranking of qualified surrogates who may be authorized to make decisions for an incapacitated patient.
These surrogate provisions are different in every state but to qualify in most states, the default surrogate must be:
- An adult (could be defined as 18 years of age or older)
- Capable of making complex medical decisions
- Reasonably available to make medical decisions on behalf of the patient
- Able to meet with medical staff to discuss the patient’s condition
- Willing to make difficult medical decisions on behalf of the patient
- Aware of the patient’s wishes about various medical decisions to be made
- Related to the patient by blood, marriage or adoption
Provided a person qualifies as a surrogate in any given state, each state also will prioritize qualified surrogates in the order of how they may serve in that capacity. Every state statute may be different is some respect but most states prioritize default surrogates as follows:
- Spouse, parent or child
- Family member related by blood to a designated degree (usually 2nd or 3rd degree of relationship)
- An “interested person,” who is someone not related by blood, marriage or adoption but who is a close friend and has shown special care or concern for the patient (recognized in 23 states)
When a doctor cannot find a qualified surrogate decision-maker, then the doctor may rely on any institutional policies or procedures for making decisions on behalf of an incapacitated patient. This may require consultation with:
- Other physicians
- A hospital ethics committee
Some statutes even provide how those in such consultations must reach decisions — some allow for a majority vote; some allow for consensus.
There are only two states that allow the attending physician to make an end-of-life medical decision on behalf of a patient when no other surrogate may be located.
However, 35 states expressly exclude attending physicians as qualified surrogate decision-makers. The only other option is for the court to either appoint a guardian or to make a determination itself.
Who Do You Want to Make Your Decisions?
There are only two options for seeing that your medical decisions are made when you’re incapacitated — either you make them or someone else makes them for you. You must have an advance directive in the form of a living will if you want to make them. You must have a medical power of attorney if you want someone you choose to make your decisions for you.
If you do not have one of these two advanced directives, you can be certain that someone else will make your medical decisions for you someday.