Advance directives pale in comparison to the real-time medical decisions caregivers make every day, whether to encourage medication, contact a specialist, call 911, or continue treatment for a loved one. National Healthcare Decisions Day (NHDD), observed each year on April 16, encourages individuals to complete an advance directive. But when the true day of reckoning arrives, when death seems imminent, disfigurement is likely, or mental capacity is lost, this document often falls by the wayside to save a precious life.

In that moment, we might ask: Who will decide between long-term care and end-of-life care?

The limits of advance directives

Many people assume physicians will initiate serious illness conversations and guide advance care planning. Some complete a MOLST or POLST form, which provides medical orders regarding CPR, hospitalization, and life-sustaining treatment. Yet even with these documents in place, interpretation falls to someone else.

Although self-determination is a foundational right, most people eventually surrender decision-making authority to:

• physicians for medical expertise
• caregivers for real-time decisions

And in crisis, physicians often turn to the caregiver and ask the unthinkable: “Should we continue, or should we let go?” Caregivers rarely feel competent to take full responsibility and make this decision.

The false divide: quality of life vs. preserving life

Seven out of 10 people say they value quality of life over preserving life. Yet most die in medical institutions. Furthermore, 84 percent prioritize and value aging in place rather than medical institutions. This gap is not primarily about incomplete paperwork. It reflects a deeper truth: Caregivers are not empowered or educated to act decisively in emergencies to withhold or withdraw medical intervention in support of dignity-based care.

When a loved one can no longer function physically, mentally, or emotionally, dignity and quality of life are profoundly affected. At that moment, caregivers face a defining choice between two paths:

• Duty-based medical care: Preserve life through every available medical intervention.
• Dignity-based whole care: Honor one’s quality of life, age in place, promote wellness, and allow natural death.

Both are legitimate, but the authority must be clear. The decision rests with the medical power of attorney, or better yet, the merciful power of attorney.

The dignity decree

If advance directives are insufficient, NHDD must move beyond documents toward decisiveness. Consider a Dignity Decree that outlines the following in the event of imminent death, disfigurement, or permanent incapacitation requiring long-term care:

• Withhold medical intervention and provide comfort measures.
• If confirmed within three days, withdraw medical intervention and provide end-of-life care.

This three-day stopgap allows for reassessment and reflection, without automatically defaulting to aggressive intervention and prolonged institutionalization, by holding out hope. Clear language removes ambiguity. Caregivers can no longer say, “I did not know what they wanted.” The decree becomes legally binding and unmistakable: “Give me dignity.”

A leadership role for caregivers

Health care contains two distinct disciplines: whole care and medical care. Whole care is a nonmedical approach led by caregivers and provided by home care companies. It focuses on wellness, prevention, comfort, and dignity-based care. Whole care engages the person’s mind, body, and spirit in living fully, even when living independently is no longer reasonable or acceptable.

Medical care, on the other hand, is directed by physicians and delivered in clinics, hospitals, and institutions. It determines diagnosis, prescribes treatment, and provides duty-based care. Medical care focuses on disease management, intervention, and prolonging life at all costs.

Both disciplines are legitimate, but they are not the same. Whole care preserves dignity, while medical care treats disease. When these roles are clearly defined, caregivers are no longer passive participants in a physician-led system. They become leaders of whole care, equal in importance and decision-making.

Yet caregivers cannot become leaders if education remains informal, fragmented, and underfunded. Education for caregivers, outside the medical system, should be recognized as a public health priority, like sex education. Centers for Medicare & Medicaid Services (CMS) funding that reimburses physicians for serious illness conversations would better serve structured caregiver education. A course in dignity-based care should be standard within caregiver support groups and community health programs.

Empowered caregivers do not replace physicians. They complement physicians by safeguarding a clear choice: Pursue treatment to prolong life, or prioritize comfort to preserve dignity.

On NHDD, go beyond the advance directive

National Healthcare Decisions Day should not end with signing a document. It should include three deliberate choices:

• Select a medical or merciful power of attorney.
• Decide whether to endorse a Dignity Decree.
• State the preference for duty-based medical care or dignity-based whole care.

The real work begins after April 16

The real work of NHDD is empowering caregivers, before the emergency, to lead with clarity, courage, and compassion. Advance care planning is incomplete unless it addresses a difficult truth: Patient autonomy eventually gives way to caregiver authority.

The question is not whether death will occur. The question is whether caregivers will support a loved one’s wishes. On National Healthcare Decisions Day, the invitation is simple: Empower and educate next of kin in emergencies so they can make life-or-death decisions.

Kevin Haselhorst is an emergency physician and author of Wishes To Die For: Expanding Upon Doing Less in Advance Care Directives.