In the United States, approximately 40% of adult medical inpatients and 70% of elderly patients facing treatment decisions are incapable of making medical decisions. Someone will make medical decisions for them.
There are two key tools to plan ahead for medical decision-making in the event of incapacity: a health care proxy and a living will. Here’s what they do and which one matters more.
Living Wills, Health Care Proxies, and Advance Healthcare Directives: What’s the Difference?
Let’s start by getting our terms straight:
A living will sets forth your wishes regarding life-sustaining treatment in the event of terminal illness, an end-stage condition, or persistent unconsciousness.
A health care proxy (also known as a health care power of attorney) appoints an agent to make medical decisions on your behalf in the event you are unable to.
An advance healthcare directive is a catch-all term that can refer to a health care proxy, a living will, or (usually) a document containing both.
Living Will Basics
A living will contains your instructions to your health care provider or agent regarding medical treatment, to be followed if you’re unable to make medical decisions. Living wills typically address whether to withhold or withdraw life-sustaining treatment (including a feeding tube, CPR, assisted ventilation, dialysis, surgery, antibiotics, and chemotherapy) in two situations:
If the patient is in a persistent vegetative state
If the patient has a terminal illness or end-stage condition.
Living wills typically also address whether to provide treatment to alleviate pain and suffering, even if such treatment will hasten one’s death.
What are the benefits of a living will? Making your wishes known provides direction to your family and can relieve them of making difficult medical decisions. End-of-life decisions can engender feelings of guilt or precipitate family conflict and even legal disputes, as in the well-publicized case of Terri Schiavo. Knowing that a loved one would prefer not to artificially prolong their life can allow one’s family to move forward with a clearer path.
Limitations of Living Wills
Living wills, however, have several inherent limitations:
Lack of medical knowledge and context. A living will asks a non-medical professional to express their future wishes on complex medical decisions, in a vacuum and without medical advice. This tends to result in a major disconnect between living wills and the reality of medical decision-making.
Imprecision and misinterpretation. Many living will forms use imprecise or undefined medical terms. Others invite you to write out your wishes in paragraph form, which is a recipe for confusion when it comes to complex medical decision-making. In one horror story, a healthy 64-year-old woman had surgery to reset a broken leg, but the following day experienced internal bleeding. The attending nurse misinterpreted her living will as a Do Not Resuscitate order and told the physician not to send the patient in for treatment, nearly causing the woman to die. (Another physician caught the mistake, fortunately, and saved the woman.)
Lack of enforcement. Living wills are legally binding in all but three states (Massachusetts, Michigan, and New York), meaning your health care provider is legally obligated to follow your wishes (if known) or otherwise permit your transfer to another provider. (In New York, a living will is in effect binding on your health care proxy, who is obligated to follow your wishes if known.) In practice, however, a living will is only as effective as your family members wielding it. In the event of incapacity, most providers will not dig around for your living will, but will instead turn to your family to determine your wishes. If your family cannot find your living will, can’t understand it, or simply don’t follow it, then your living will likely won’t be enforced.
Health Care Proxy Basics
Every state allows you to appoint an agent to make medical decisions on your behalf in the event you cannot, and it’s a good idea to do so. Your proxy can flexibly respond to medical situations in light of all circumstances and available medical advice — a benefit you don’t have when attempting to spell out your wishes in advance through a living will.
In most states, your agent has the authority to make any medical decisions you yourself would be able to make, subject to any limitations you impose in the health care proxy. Some states, however, impose limits by law. (In New York, for example, the agent cannot decide to withdraw a feeding tube unless the patient’s wishes are known to the agent.)
If you don’t have a health care proxy, someone will still make medical decisions for you. Most states have “surrogacy” laws which set a default hierarchy of family members to make medical decisions — typically spouse first, then adult children, then parents, then siblings. However, where multiple family members qualify, conflict can result. Appointing one trusted person as proxy removes this dynamic and designates a single voice to communicate your wishes to your provider.
Health Care Proxy, Living Will, or Both?
In light of the above, what’s the best approach? Individual circumstances differ, but here’s some general guidance:
Execute a health care proxy. If you have a trusted family member or friend to serve as your proxy, this is always a good idea. See below on how to do this.
Discuss your wishes with your proxy. Discuss whether you would want life-sustaining treatments to be withdrawn in the event of terminal illness or a persistent vegetative state. Even if you’re not sure, discussing your views and values will help your proxy make decisions down the road.
Preserve flexibility for your proxy. Should you become incapacitated, your proxy will be in a far better position to make a decision, after consideration of all circumstances and medical advice, than you sitting here now. Thus, if you’ve designated a trusted proxy, it’s usually wise to give them maximum authority and avoid tying their hands through strict parameters in a living will. In some states (like New York), this may require including specific language in the proxy on the withdrawal of a feeding tube or other life-sustaining treatment.
Don’t assume you need a living will. If you’ve designated a trusted proxy who knows your wishes, you may not need a living will — and you’ll avoid some of the pitfalls of living wills, like inadvertently limiting your proxy’s discretion or inviting misinterpretation.
Be careful when completing a living will. If you’ve decided you want a living will — perhaps because you do not have a trusted proxy, or you have clear and educated views on medical decision-making — exercise care when completing it. Ensure the medical terms are precise and the directives are not overbroad. When in doubt, obtain the guidance of a medical professional or attorney.
How to Execute a Health Care Proxy and a Living Will
In general, you don’t need a lawyer’s help to complete a health care proxy, though you may benefit from one. Most states provide a standard health care proxy form you can use — for example, here is New York’s. (Everplans maintains a database of health care proxy forms by state.)
While you can execute a living will without a lawyer’s help, it is a more complicated document and easier to mess up. Some states have a standard form for a living will, and some don’t. (Everplans’ database also includes living will forms by state. New York does not have a standard form.)
Depending on your state, you’ll need to sign these documents before either witnesses or a notary. Provide a copy of the documents to your proxy and your doctor so the form is available in case of an emergency.
What about a POLST or DNR?
Two other documents concerning end-of-life treatment are Physician’s Orders for Life-Sustaining Treatment (a “POLST,” or “MOLST” in some states) and a Do Not Resuscitate order (a “DNR”). These are the brightly-colored one-page forms that may instruct emergency medical personnel not to provide CPR or other life-sustaining treatment so that a person with a terminal illness or end-stage condition may die without artificial prolongment. Both are orders from physicians typically for the seriously ill or frail, intended to direct expected emergency treatment.
By contrast, a living will states your preferences regarding future non-emergency medical decisions, in particular whether to withdraw life-sustaining treatment. Accordingly, living wills (and health care proxies) are appropriate for anyone — young or old, sick or healthy.
Disorders of Consciousness: Comas, Vegetative States, and Minimally Conscious States
Much of the discussion surrounding living wills and end-of-life decision-making focuses on vegetative states, which can last for years or even decades. In the United States, there are estimated to be 25,000 people in a vegetative state and from 100,000 to 300,000 people in a minimally conscious state.
Such disorders of consciousness result from severe brain injury, such as traumatic injury or oxygen deprivation. They fall into three main classifications, which are often confused:
Coma: The patient is unconscious, unaware, and unresponsive, and does not wake at all. True comas rarely last more than several weeks, as patients who survive typically transition to a vegetative state or minimally conscious state, or they regain full consciousness. (Most stories you hear of people waking from a “coma” after many years actually involved one of the two conditions listed below.)
Vegetative state: Also called unresponsive wakefulness syndrome, a vegetative state differs from a coma in that the patient has sleep/wake cycles, with eyes opening periodically. The patient’s body may move, and the patient may groan or even speak. However, the patient remains unconscious, unaware, and unresponsive. After three months, a vegetative state is classified as persistent.
Minimally conscious state: The patient exhibits minimal, inconsistent signs of awareness. The patient may follow simple instructions, indicate yes or no, speak some words, and respond to stimuli (such as by smiling, grasping an object, or tracking visually).
Several studies have indicated that misdiagnosis is widespread, with approximately 40 percent of patients diagnosed as in a vegetative state actually in a minimally conscious state. This is significant because the recovery rate from a minimally conscious state is much higher — a 2014 study of 102 patients found that 42% of those in a minimally conscious state regained consciousness with some ability to communicate, compared to only 20% of those in a vegetative state. (The same study found that the average time to recovery for patients in a minimally conscious state was 4 months from the brain injury, compared to nearly 2 years for those in a vegetative state.)
So what’s the takeaway? There’s no one-sized-fits-all approach to disorders of consciousness, so avoid strict parameters in a living will (such as stating that all life-sustaining treatment must be withdrawn after one month in a vegetative state, or that life-sustaining treatment should never be provided in the event of a vegetative state). Instead, provide flexibility to your agent and health care providers to make the best decision after careful examination of the circumstances.