Tuesday, October 27, 2009

Messing Up the "Pro-Life" Message: Hospice and Palliative Care.

Cicely Saunders, a student of the Christian writer C.S. Lewis, founded the first modern hospice in Britain in 1967 as a “powerful force for undercutting the movement for active euthanasia," yet today, many "pro-life" and Catholic organizations are expressing concern about not only the (slow) advance of palliative services and hospice facilities, but also the encouragement of end of life discussions, advance directives, and living wills as fit tools for "government-encouraged euthanasia."

While the health care debate over the summer caused these groups to come out staunchly against reform and end of life discussions, many are now backtracking to convey a more nuanced view of end of life care, including hospice and palliative medicine. The fear-mongering hasn't ceased, it's just been ameliorated by more reasonable voices.

In an article today in CNSNews titled, "End of Life Care Should Not Not End Life," that best demonstrates cultural conservatives' fumbling through the end of life care conversation, Ken Connor notes two new National Institute of Health studies that show, "sometimes less [aggressive treatment at the end of life] is better."

The studies, featured in the New England Journal of Medicine, document how certain medical therapies implemented in the final months of a patient's life often cause emotional and physical stress and pain, effectively negating any positive benefits associated with such treatments.

But quickly he lays out the concerns "pro-life" advocates have with embracing the results of these studies:

However, those worried that a government takeover of health care will result in health care rationing in keeping with Dr. Ezekiel Emanuel's"complete lives" theory view these studies with alarm—and for good reason.

In a culture where "quality of life" is increasingly viewed as the predominant justification for abortion, assisted suicide, and even
infanticide, there is a legitimate concern that these kinds of studies will be used by the government to advance policies that endanger society's most vulnerable members.

According to Connor, what determines the ethical use of treatment at the end of life is who makes the decisions. He argues (with a point straight out of Luntz's Republican talking points on health care reform) that government-run health care puts bureaucrats between the patient and the doctor by asserting protocols regarding what treatments work best.

More than one commentator has noted that this argument puts "pro-choice" groups in a strange position. Michelle Bachman, after all, echoed the pro-choice activists' call when she stated in August:

"That's why people need to continue to go to the town halls, continue to melt the phone lines of their liberal members of Congress," said Bachmann, "and let them know, under no certain circumstances will I give the government control over my body and my health care decisions."

As "pro-life" groups work to elevate the issue of euthanasia on their platform (at the PA Pro-Life Conference in Scranton this week, again and again speakers urged activists to expand their efforts to include euthanasia and not just abortion), some find that their arguments must be retooled. The traditional straight-ahead argument that God has jurisdiction over life from conception to "natural" death is compromised by the issue of euthanasia when government is seen as the perpetrator. Until now, government has been appealed to to stop abortion and has been seen as the best enforcer of "pro-life" positions. How gratifying it is for those of us who have supported individual choice for abortion to have "pro-life" groups take up the choice banner for end of life care, even if their arguments for choice are skewed by misinformation and lack of a definition for "natural" death.

The elevation of "euthanasia" to a more prominent position on the "pro-life" platform can be contributed to both an incoming Democratic administration focused on reforming health care, but also to successes by Death with Dignity advocates in Montana, where the Supreme Court is currently debating the constitutionality of aid in dying, and in Connecticut and New Hampshire, where a case has been brought before the courts and a bill is in committee.

Since the fervor of the summer months, when "death panel" and "rationing" talk rallied and united "pro-life" groups against end of life discussions and "euthanasia", public opinion, numerous studies like those noted by Connor, and those willing to discuss the benefits of end of life care have brought back some gravity and nuance to the discussion. (Studies show that patients prefer choice in dying, even those who ascribe to conservative values. In 2005, during the Terri Schiavo media storm, studies found that an overwhelming majority of the population opposed the Bush administration's efforts to keep Schiavo alive.)

Hence articles like Connor's which admit that aggressive treatment may not be the best thing for all patients (undermining the popular accusations that rationing will occur under a new plan), but that health care reform still jeopardizes "society's most vulnerable members." His example of what will happen comes straight from Wesley J. Smith:

At many hospitals and nursing homes in the United Kingdom, for example, elderly patients deemed close to death are placed in a "care pathway" designed to ease the dying process and conserve medical resources.

Once it is determined that a patient is near death, life sustaining fluids and medicines are withdrawn and the patient is placed under heavy sedation.

As bioethicist Wesley J. Smith
describes it, "the Pathway misuses the legitimate treatment of palliative sedation, and mutates it in some cases into a method of causing death, known as terminal sedation.

This means that sedation is sometimes administered, not because the individual patient actually needs the procedure, but because he or she has been reduced to a
category member, and that's how members of the category are treated."

I don't know where Smith gets his information and I highly doubt that British hospices operate under greatly different guidelines than US hospices do. But I do know (from studies and my own personal experience) that terminal sedation is a regular practice in hospices across the US - often without the consent of patients or their family. Rather than allow a terminal patient to suffer, doctors sedate them to the point of unconsciousness. Feeding and hydration are stopped. The patient dies in an unconscious state. Doctors are permitted to use terminal sedation, or continuous deep sedation (CDS) because pain relief is the objective, not death, and doctors cannot be prosecuted for this treatment under what is called the "double effect."

As Mark Connell, attorney for Baxter in the Baxter v. Montana Death with Dignity case, stated in oral arguments to the Montana Supreme Court:

We're not working on a blank canvas here. Montana recognizes multiple situations where it's alright for a doctor...to hasten death. This happens...every day in our hospitals. This double effect doctrine is when a doctor goes to a patient and his family and says, "You're in suffering and I'm gonna put you out of that suffering. Here's the morphine that can do the job." This is done deliberately so. So our law recognizes there are certain situations because of the paramount duty doctors have and the state recognizes to alleviate suffering medicine can proceed to the point where death is hastened.

And here, beyond basic misunderstanding of hospice or palliative care, is where "pro-life" groups are left to wrestle with end of life care: over suffering. The horse is out of the barn because of CDS. If Death with Dignity is upheld in Montana, the courts, at least in that state, will have determined that the line between CDS and Death with Dignity is slim. The highlighting of CDS in this way makes people like Smith and Connor nervous because they may argue for patient choice but they know they don't really mean it.

The institution of hospice and it's common - and legal and accepted - practice of CDS exposes their agenda of imposing suffering on terminal patients, even as it undermines "pro-life" groups' calls for personal choice in end of life care.

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