Kim Callinan, Compassion & Choices


Recently introduced legislation in the Senate, the so-called “Patients Rights Act” (S. 1993), should be renamed the “Patient Anguish Is Neverending Act” (PAIN Act) because that is exactly what will happen if this bill is enacted.

This inhumane bill would withhold federal funding (including Medicare, Medicaid and the Affordable Care Act) from any health care entity that supports their patients with these or any other requests that intentionally shorten or end life, no matter what the patient wants or how much they are suffering. For example, it would make it virtually impossible for a terminally ill person to end their suffering and die peacefully, even when life-sustaining treatment violates the patient’s explicit stated wishes verbally or in writing.

In fact, it would become virtually impossible for:

  • A health care proxy to carry out their loved one’s written, stated preferences to have life support removed, even if they are in a persistent vegetative state for days, weeks, months or years.
  • A health care proxy to honor a person's written wishes to withdraw treatment, even if the person has severe dementia, has lost the ability to recognize loved ones and is completely dependent on caretakers for daily living tasks, such as speaking, eating, toileting, bathing, changing position, or getting out of bed.
  • A mentally capable, terminally ill person with six months or less to live, who lives in one of the 10 jurisdictions that has authorized the option of medical aid in dying, to obtain a prescription medication from their doctor, so they can end unbearable suffering and die peacefully in their sleep. One of these jurisdictions is Montana, the home state of Sen. Steve Daines, one of the bill's original three sponsors.

Daines sponsors

The Assisted Suicide Funding Restriction Act already bans federal funds from being used for medical aid in dying; the “Patient Anguish is Neverending Act” goes far beyond this already discriminatory law. It bars facilities who perform any service that intentionally shortens life from receiving any federal funding for any health care service. What facility would be willing or able to survive without payments from Medicare, Medicaid or the Affordable Care Act?

Very few, if any, because federal funding is a major revenue source for virtually all health care facilities. By forcing health care systems to pursue only one value — the absolute duration of a life — rather than balance quantity with the quality of that life, the bill would eliminate end-of-life care options for patients during their most vulnerable time. Only the privileged few who can afford private doctors who do not accept any federal reimbursement might be able to realize a peaceful passing. The rest of us would suffer incessantly, while our loved ones stood by powerless.

The “Patient Anguish is Neverending Act” also encourages religious zealots to report any doctor or health care system that does not abide by this “life at-all-cost” health care mandate to the Health and Human Services’ newly created Office of Civil Rights. Your taxpayer dollars would then be used to fund this office’s obligation to investigate all suspected violations, and turbo-charge the Catholic and fundamentalist agenda to dictate health care options in America.

Dignity at life's end

At a time when the American public can agree on little, it is united around a common desire for autonomy and dignity at life’s end. These shared values have resulted in unprecedented progress for the end-of-life options movement over the past five years: six jurisdictions in five years have authorized medical aid in dying: California, Colorado, Washington, D.C., Hawaii, New Jersey and Maine; 21 national and state medical societies have dropped their opposition; and a growing number of leaders and organizations, especially Latino and African American leaders, have adopted supportive policies.

While disguised as “patients rights” legislation, this bill is quite simply religious zealots’ latest attempt to halt our progress at the ballot box and in state legislatures, and impose their religious values and priorities on all Americans.

Decisions about how and when we die are deeply personal and are best left to patients, in consultation with their doctor and their loved ones, not dictated by a punitive government mandate. A person who would choose to live in a persistent vegetative state already has that option. It’s not acceptable for religious zealots to impose their values or religious beliefs on the rest of America’s end-of-life care system.

Congress should reject this outrageous legislative assault on patients’ rights, and replace it with a real “Patient Rights bill,” one that withholds federal funding for all health care services from any health care entity that violates a dying patient’s verbal or written requests for the withdrawal of treatment to end unnecessary suffering.

Subscribe to Breaking News

* I understand and agree that registration on or use of this site constitutes agreement to its user agreement and privacy policy.

Kim Callinan holds a master’s degree in public policy from Georgetown University and is CEO of Compassion & Choices.