The Patient Anguish Is Neverending Act

By Kim Callinan

Recently introduced legislation in the U.S. Senate, the so-called “Patients Rights Act” (S. 1993), should be renamed the “Patient Anguish Is Neverending Act” (PAIN Act) because that’s 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 healthcare 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 healthcare 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 healthcare 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 the primary bill sponsor, Senator Steve Daines.

The “PAIN Act” would bar facilities that perform ANY service that intentionally shortens life from receiving ANY federal funding for ANY healthcare service.

Federal funding is a major revenue source for virtually all healthcare facilities.  By forcing healthcare 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 don’t 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 “PAIN Act” also encourages religious zealots to report any doctor or healthcare system that doesn’t abide by this “life at-all-cost” healthcare mandate to the Health and Human Services’ newly created Office of Civil Rights.

At a time when the American public can agree on little, it’s 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, DC, 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.

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.

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 healthcare entity that violates a dying patient’s verbal or written requests for the withdrawal of treatment to end unnecessary suffering.

Kim Callinan holds a master’s degree in public policy from Georgetown University and is CEO of Compassion & Choices, the nation’s largest and oldest nonprofit organization dedicated to expanding and improving patient-driven, healthcare options for the end of life

This oped was originally published in The Billing Gazette.

  PAIN act, Patient Anguish Is Neverending Act