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

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.

Comments

[DaveMD]

I fear that widespread legalization of physician-assisted suicide (or "aid in dying" as you like to call it) would actually stunt the growth of palliative care research- why make extraordinary efforts to relieve pain and suffering when we can end it all with a simple prescription? I am worried about the clinicians' tendency to take the "easy way out", not the patients'. The subtle message that patients have the "duty to die" is inherent when physicians are required to offer assisted suicide every time they encounter a patient who they predict is within one year of their death.

[DaveMD]

As a physician who provides hospice and palliative care, I find your fears about this rule to be sensationalistic. It is well accepted throughout the palliative care community that optimal pain control is the standard of care for dying patients. I am a Christian and I have no such notion that patients should suffer at the end of life for some sort of "purification." I know of no Christian colleagues who believe this either. In fact, it is a Christian mandate to show mercy and compassion to those who are suffering. Your prediction of an "army of vigilantes" is unfounded. I challenge you to show me a written policy by any Catholic or Christian medical society, hospital, or health center which states that relief of pain and suffering should be withheld from the dying. The one you cited says no such thing. In fact, it refers to the principle of double effect, a principle to which most Christians ascribe, which states that it is OK to give large doses of narcotic or sedating medications if the primary goal is to relieve suffering. If hastened death occurs, this was a secondary effect, not the primary intention. I have prescribed heavy doses of morphine and other medications for patients in their final hours. This is vastly different from giving a prescription to a patient that will intentionally kill them.

[whateverlolawants]

And the funny thing is these religious wackos think pain is purifying. If anything, it blocks out the sufferer's ability to think about anything else- family, friends, good memories, their personal faith, etc. Their fixation with pain and suffering is pretty sick. And I agree- the DEA getting involved is a real travesty. No wonder so many terminally ill people kill themselves. I might too if I thought I'd end up suffering such horrendous pain only to die anyway.

[larry278]

There are flights to Switzerland too even if you have a good pain control physician. Even a pain free lingering death can leave you with undesirable conditions as your body starts decompensating. I know that RC's say that life is a precious gift but I don't like gifts like that. I'm old & if I can't walk to the toilet & swallow, I don't want the gift of life, effective pain killers or not. I recall that one translation of the Bible which has a verse, "There's a time to live & a time to die...".

[PlaceboStudman]

The irony of this is, this kind of ruling will help the mostly Republican Gun Ownership Rights people VERY happy, because those of us who are chronically or terminally ill will be more likely to turn to firearms to help end our unbearable suffering than have to deal with the intolerable suffering of having to be denied our rightful treatments because someone decided they want to put more trust in science fiction mythology (aka God and Religion) than true scientific impirical medical observations!

[outnow]

The "right of conscience" allows certain professionals to impose their own religious convictions on their patients. The pharmacist can dictate to the patient about birth control pills and morning after pills. The fertility physician can dictate who gets artificial insemination, particularly in vitro fertilization. Gay and unmarried couples are frequently turned away in the sole discretion of the physician.

California has eliminated the "right of conscience" as a defense to discrimination under the Unruh Civil Rights Act.

Discrimination in not renting to unmarried people or in not providing insurance to single or gay people is prohibited. Bush would reverse this anti-discrimination law by federal order so that garden-variety discrimination could be hidden behind the physician's "right of conscience."

[Julietta]

Thank you so much for this post. I had not given this consequence of the "conscience" rule any thought until reading this. The implications are truly scary for all of us. As someone who watched a loved one die of a fast moving & agonizing cancer, I really see the importance of a range of palliative care. It makes me shudder to think that anyone would deny this sort of treatment to someone who is suffering and in need of relief.

[Dystopic]

I unfortunately share your experience with fast moving cancers. I lost my dad to lung cancer, he was basically experimented on by the oncology staff (1980). I lost my brother to a stomach cancer and watched him go from a linebacker's build to something out of Auschwitz.

The most traumatic was watching my wife's maternal grandmother develop pancreatic cancer. The hospital dropped the ball, and now that oncologist is barred from practicing medicine in Missouri. I battled the hospice workers who would not administer enough pain meds for her, eventually finding a worker who had no problem with the fentanyl pain patch. She did not undergo treatment for the cancer, by the time they correctly diagnosed her, it was too late. She stayed lucid until the last day, and thanked me for fighting for her. I still cry like a baby when I think of that moment. My wife was pregnant at the time, but did not know, we both told her that when we have a girl, she would be named after her, and her nickname for my wife..

NO ONE should ever have to suffer even one second. The fact the the DEA gets involved with pain mangement is a travesty.

Pain is not dignity, it is torture.