Advance Health Care Directives -

Advance Health Care Directives: Protecting Your Life and Values

An advance health care directive is a written document that tells medical providers—and your loved ones—what medical treatment you do or do not want if you are unable to speak for yourself. Advance directives are typically divided into several sections in which you can:

Name a designated health care agent or proxy whom you authorize to make health care decisions on your behalf. This may be referred to as a durable power of attorney for health care.
Specify what type of care you wish to receive if you become incapacitated through an injury or illness. This may be referred to as a “living will.”
Identify the extent of pain relief you would like to receive and whether you authorize pain relief drugs that may hasten your death.
Provide instructions regarding the disposition of your organs and other body parts upon your death.

This is not just a formality. Your directive may determine whether you receive life-sustaining care or have treatment withheld. Choosing your words carefully and naming the right person as your agent can literally save your life.

While many people consider advance health care directives to be solely applicable to “end of life” medical decisions, our experience is that individuals who most need an advance directive are in their 20’s through 60’s and are not terminally ill. We have handled scores of cases involving young patients who suffered a brain injury through an accident or cardiac event that left them incapacitated and in need of long-term care, including the provision of artificial nutrition and hydration.

Life Legal recommends that you discuss your health care wishes in detail with your designated health care agent. Include the reasons underlying your wishes, such as your religious beliefs and personal convictions. If your health care agent is not your spouse, discuss your wishes with your spouse, as well as adult children and any other close family members.

We also urge you to discuss your wishes with your physician. Ask whether he or she supports your health care decisions. DO NOT choose your physician or the director of a health care facility or residential facility as your health care agent.

We live in a culture where value of human life is based on utility, rather than inherent dignity. In our experience, health care providers can be quick to withdraw care based on a lack of “quality of life,” which is a vague and highly subjective criterion.

Protect yourself by designating a trusted and informed health care agent who will ensure that your wishes, expressed directly to your agent and/or in an advance health care directive, are followed.

Choosing a Health Care Agent

Select a trusted and informed person who shares your values about the sanctity of life. Your agent should:

Be strong enough to stand up to medical staff under pressure
Be available in an emergency
Understand your wishes clearly—especially on issues like life support, feeding tubes, and pain relief

Do not name your physician or anyone employed by your health care facility, as they may face conflicts of interest.

Be Specific About Your Care

Many standard forms use vague language such as “extraordinary care” or “within generally accepted health care standards.” These terms are open to interpretation and can lead to care being withheld against your wishes.

Instead:

Use concrete, plain-language instructions.
State clearly whether you want food and water provided, even by tube.
Indicate your wishes about resuscitation, ventilators, and other life-sustaining treatments.

Sample Instructions

I direct my health care agent, health care providers and/or others involved in my care to provide treatment in accordance with the choice(s) I have marked below:

Other Wishes
Many advance directive forms allow you to include other wishes or instructions for medical care and treatment. You may wish to include a statement reminding health care providers that you do not want your death to be hastened or induced under any circumstances. For example, you can write, “I understand that my agent(s) will likely be greatly pressured to ‘protect my dignity’ and comply with ‘generally accepted medical norms’ in certain circumstances to hasten or induce my death by medical intervention or inaction. The length, term, and quality of my life is up to God, not my agent. I instruct my agent to comply with my wishes as stated herein.”

You may also simply state, “I do not want my death to be hastened or induced under any circumstances, even if my prognosis is very poor. I want to continue to receive medical treatment and nutrition and hydration.”

Relief from Pain
Many people are concerned that alleviation of all pain or discomfort may hasten death. Advance directives often include a provision whereby you can state the extent of pain relief you wish to receive. You can, for example, write, “I do not want pain relief that will hasten or induce my death.”

Organ and Tissue Donation: Proceed With Caution

Advance directive forms allow you to state whether you would like to donate all or some of your organs and body parts. This is a very personal decision that requires careful thought. You should familiarize yourself with the process of organ harvesting and transplant before signing any agreement to be an organ donor, whether through an advance directive or through an organ and tissue donor registry (e.g., Department of Motor Vehicles registration).

If you are registered as an organ donor—such as through the Donate Life registry—that “yes” is legally binding in most cases and cannot be overridden by your health care agent. Once you are in the registry, procurement teams will treat it as blanket consent, even if you had specific conditions in mind.

The registry does not allow you to record nuanced instructions—such as donating only certain organs, requiring family or clergy to be present, or ensuring prompt burial. If you have any conditions or reservations, it is safer to remove yourself from the registry and record your wishes in an advance directive or durable power of attorney for health care.

Please be aware that if you change your mind about being an organ donor, you must take steps to remove your name from the organ donor registry in every state where you may have registered. It is not sufficient to decline to be an organ donor when you renew your drivers license. Each state has a different process for revoking your agreement to be a registered organ donor.

If you choose to be an organ donor, Life Legal’s recommendation is that you remove your name from the registry and instead authorize your designated health care agent to make the decision whether to donate your organs based on your circumstances in real time:

For example, you can write: “I give sole authority regarding the disposition of my organs and other body parts to my health care agent named in this document.
You may even wish to add, “If my named health care agent is unable or unwilling to comply with my wishes, I do not want to donate my organs.”
Of course, you may also refuse to donate your organs by writing, “I do not want to donate my organs.”

In addition, you can spell out exactly what you do and do not permit. For example, you may want to require:

That certain confirmatory tests be used before declaring death
Independent verification by a physician not involved in transplantation
A waiting period after circulatory arrest before declaring death
A prohibition on specific procedures such as NRP

Without such safeguards, you may not be fully protected from premature or ethically questionable procurement practices.

Serious Concerns About How Death Is Declared for Organ Donation

Before any organs can be taken, medical personnel must legally declare death. However, the criteria and timing for this determination are not uniform and may not align with your understanding of death. “Death” can be declared based on brain death—the irreversible loss of all function of the brain, including the brain stem—or circulatory death, which is the irreversible cessation of all circulatory and respiratory function.

Brain death is based on neurological tests, some of which can exacerbate and already significant brain injury.

Both methods raise concerns about consistency and the potential for premature declarations.

Donation after Cardiac Death (DCD)

In DCD cases, the patient is removed from life support. If the heart stops beating, a short waiting period (2 to 5 minutes) is observed before death is declared. The patient’s organs are then removed. Critics warn that this brief interval may not be enough to ensure that death is truly irreversible, creating a risk of declaring death prematurely in order to procure organs.

In many instances, patients who have suffered an initial debilitating event such as a heart attack or stroke are not provided with nutrition in the days or weeks following the incident. The deprivation of nutrition weakens the patient and often contributes to a second event—at which point death is quickly declared under DCD protocols. A “Do Not Resuscitate” (DNR) order is imposed to ensure that the patient is not revived. This practice raises serious ethical concerns, as it can hasten death for the purpose of making organ retrieval possible.

Normothermic Regional Perfusion (NRP)

An increasingly common practice in circulatory death cases is normothermic regional perfusion (NRP). After life support is withdrawn and death is declared, the surgical team restarts the heart and restores blood flow to the body—but clamps the vessels to the brain so that no oxygen reaches it. While this is done to keep the organs in peak condition for transplant, it raises grave ethical concerns. It means that circulation is deliberately re-established in a person whose death has just been declared, while simultaneously ensuring the brain cannot receive blood. Circulatory death is defined as the irreversible cessation of circulatory and respiratory function. If a patient’s heart can be restarted, its cessation was not irreversible. For this reason, many physicians and ethicists believe this procedure blurs—if not crosses—the line between life and death.

Futility of Care Provisions

Even a carefully written directive can be overridden if a doctor or hospital determines that further treatment is “medically futile.” These determinations are subjective and may conflict with your wishes. This is another reason to choose a strong health care agent and ensure your wishes are in writing.

Advance Directive Snapshot Guidance

Familiarize yourself with the signature requirements in your state. Many states require an advance health care directive to be signed in the presence of two witnesses and/or notarized by a notary.
Provide your designated health care agent and your doctor with a signed and dated copy of your advance directive.
As soon your advance health care directive is duly signed and/or notarized, it is a legally binding document. If you change your mind about your designated health care agent or health care wishes, we recommend that you execute new advance directive and destroy all copies of the previous document.
Many advance health care directives and durable (health care) power of attorney templates include provisions authorizing the withholding or withdrawal of “extraordinary” care. This is a highly subjective term and we do not recommend signing provisions that include refusing “extraordinary” care. Instead, you can replace those provisions with the language suggested above.
Similarly, we do not recommend including phrases such as “within the limits of generally accepted health care standards,” as this too is highly subjective. You may either strike out such phrases or replace them with the language suggested above.
Please be aware that every state has a statutory “futility of care” provision whereby physicians are not obligated to provide care they do not believe to be medically beneficial, regardless of the instructions in your advance directive.

State-specific advance health care directive templates are available through the American Bar Association’s Commission on Law and Aging. Click here to access the forms. Please be aware that some of the links have not been updated.* You can write in specific instructions regarding your health care wishes. You may also cross out any items you find objectionable.

Disclaimer: Life Legal does not endorse every agency or organization represented on the document linked above. This is merely a source for state-approved advance directive forms.

*Here are state-specific forms that are not available on the American Bar Association’s website:

California

Virginia

Life Legal encourages you to work with a pro-life attorney who is committed to protecting you from premature or unnecessary withdrawal or withholding of life-sustaining medical care and treatment. If you have any questions or if you would like a recommendation for a pro-life attorney, please call Life Legal at 707.224.6675.