New HHS "Conscience" Rule Jeopardizes End-of-Life Pain Care

This ill-conceived rule will surely obstruct and delay good care in many instances, increasing the suffering of dying patients and their loved ones.
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The administration, hurrying to cement its social agenda in place before leaving town, adopted a most meddlesome, dangerous rule at Health and Human Services.

The proposed "conscience" rule is scheduled to take effect on January 19, 2009. Congress and President-elect Obama have separate and distinct options to prevent implementation of this rule. Click here to urge your federal legislators to prevent this rule from taking effect.

Under the guise of protecting those with strong religious and moral convictions from workplace "discrimination", the rule encourages zealous, sanctimonious healthcare workers to act out their convictions at the expense of the patients they are supposed to serve.

Most commentary on this rule focuses on impending damage to reproductive services and access to abortion and contraception. But at Compassion & Choices, our concerns center on end-of-life care, especially the palliative care measures that rescue patients from unbearable agony. This ill-conceived rule will surely obstruct and delay good care in many instances, increasing the suffering of dying patients and their loved ones.

The pertinent section, 88.4 d 2, bars health care institutions and employers from requiring "...any individual to perform or assist in the performance of any part of a health service program..." if it would offend his or her religious beliefs or moral convictions. Health care workers cannot be fired or disciplined for refusing to do their job based on their beliefs. Absolute job protection extends to physicians, nurses, pharmacists, respiratory therapists, IV technicians --- apparently even cleaning and maintenance staff.

Compassion & Choices submitted a letter stating its concerns during the mandatory comment period. The comments went unheeded and the final rule stands virtually unchanged from the one proposed.

Anyone who works in end-of-life care or health care policy, and anyone who has cared for a loved one during the final stages of terminal illness, knows we already have a problem, even without this rule. Too much pain and suffering goes untreated or under-treated and too many people die in agony. The Compassion & Choices legal team has helped raise the standard of care by sponsoring helpful bills and successfully challenging under-treated pain as a form of elder abuse, but the need for improvement remains great.

Now comes a federal rule encouraging workers to exercise their idiosyncratic convictions at the expense of patient care. Employees who, for example, might exalt suffering, or disapprove of discontinuing feeding tubes or respiratory support have license under this rule to refuse to deliver or support any treatment or procedure. They can do this without prior notice or the courtesy of providing substitute staff. End-of-life suffering often presents as a medical emergency. Precipitous refusal could leave patients in agonizing pain or gasping for air while others scramble to fill the refuser's duties.

Our staff and volunteers deliver information and support to clients and their families throughout the nation, and we hear many excuses for under-treating end-of-life symptoms. Some are profound, like doctors genuinely afraid to prescribe rapidly escalating doses of morphine and other opioids that are often necessary to stay ahead of pain. They fear a whistle blower might alert drug enforcement agents, initiating a federal prosecution. Some excuses are downright silly, like the determination to keep a dying person from becoming "an addict" in their last days.

But the most wretched excuse for under-treating pain and other agonies comes from pious, sanctimonious zealots. I recall one doctor who told a client's family not to expect total relief because "we all have to suffer some" in dying.

This particular conviction finds support in the Ethical and Religious Directives for Catholic Healthcare, (ERDs) which guide the behavior of every Catholic institution and healthcare worker. ERD #61 instructs that dying patients whose pain, breathlessness or other agony cannot be relieved by usual methods should receive instruction in "the Christian understanding of redemptive suffering."

Fortunately, presiding bishops and Catholic hospitals enforcing the ERDs generally lean toward mercy and compassion in their interpretation. But the existence of this rule threatens that mercy with a new army of vigilantes authorized to further their patients' redemption by slowing or withholding the medication that would relieve their pain. If discovered, such sanctimonious saboteurs could not be disciplined, fired, or even re-assigned, under this rule.

Most vulnerable is the compassionate end-of-life treatment known variously as "terminal sedation" "palliative sedation" or "total sedation." Conditions like bone metastasis or bowel obstruction can cause pain so virulent it is relieved only by placing the patient in a coma with strong sedatives and maintaining the coma until death. The authors at HHS apparently had terminal sedation (TS) in their sites in the draft proposal. They revealed their disapproval when they erroneously referred to it as "euthanasia," citing a 2007 New England Journal of Medicine report that 17% of physicians object to TS on moral grounds. While the final rule did not refer to this pre-decisional citation, nothing suggests the department abandoned TS as a target.

Pious believers stress conscious mental preparedness for death and are reluctant to cause unconsciousness unless they deem it absolutely necessary. (See ERD #61) Unaware of this, we were initially surprised when Christian medical societies and Catholic hospitals fought a California bill to inform patients about palliative sedation. The Right to Know End-of-Life Options Act (R2K) insures patients will receive information about this treatment option when they ask. Right-to-life publications reacted to R2K with contempt and hysteria. They called this simple information law "nurse assisted suicide," "euthanasia flirtation" and "suicide promoting."

Such vehement objection suggests right-to-life activists may sabotage terminal sedation as a treatment option, with job security guaranteed under the protections of the new rule.

Compassion & Choices has worked for years to raise the standard of care for end-of-life pain and symptom management. We've litigated under-treatment and sponsored bills to establish a right to pain care and mandate pain care education as a condition of physician licensure. It dismays us to know policies, laws and education efforts could fall victim to healthcare workers encouraged to impose their personal religious convictions on dying patients in every state.

Revocation of this rule should be high on the Obama administration's immediate agenda. If procedural requirements slow the revocation process, Congress should act immediately to prevent the rule from taking effect. Decency and mercy demand swift action.

Click here to urge Congress to take action today.

Barbara Coombs Lee is President of Compassion and Choices, a nonprofit organization working to improve care and expand choice at the end of life.

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