Aid in Dying in Massachusetts

It's no surprise that the Massachusetts Medical Society has affirmed it's stance on opposition to aid in dying. The Dignity 2012 campaign which has put aid in dying on the ballot next year is receiving a lot of attention and I expect the MMS was under pressure to reassert their position. The Boston Globe article is interesting for one point, however: the announcement was made without MMS polling it's members. In other words, the decision was made by leadership. I suspect that, like most medical societies in the US, leaders feel that coming out in support of aid in dying is still too nuanced a position and one that continues to undermine faith in doctors if publicly stated. Yet, the double effect, a practice that allows a doctor to give a patient a lethal dose of medicine so long as the intent is to keep the patient comfortable, even if it kills them, is still upheld across the country. Between aid in dying and the double effect, one has to ask, where is the bright line? At public perception, apparently.

The National Catholic Register also weighs in this week on Dignity 2012, outlining for readers what the Catholic Church is doing in that state to combat legalization (and neglecting to count Montana as one of the states where it is legal). Most of the article's quotes from Catholic leadership echo last June's announcement by the Catholic Church of a new campaign to fight aid in dying. A clip from the article:

In Masses geared to area legal and medical professionals, Cardinal Seán O’Malley has taken the opportunity to speak out forcefully against the initiative.

“We hope that the citizens of the commonwealth will not be seduced by the language, ‘dignity, mercy, compassion,’ which are used to disguise the sheer brutality of helping someone to kill themselves,” said the archbishop of Boston at the Red Mass on Sept. 18.

Stephen Crawford, communications director for Dignity 2012, the supporting group of the initiative, thinks the “people of Massachusetts are ready for the discussion on this issue.”

Janet Benestad, chairwoman of a Boston archdiocesan steering committee on physician-assisted suicide, said that a group of about 12 people, some with connections to Harvard Medical School and the New England Journal of Medicine, were able to get an initiative petition certified by the Massachusetts attorney general on Sept. 7.

Supporters of the petition then had to gather 68,911 signatures for it to be considered by the state Legislature. Brian McNiff, a spokesman for the Secretary of the Commonwealth of Massachusetts, said as the Register went to press Dec. 8 that the group had filed over 80,000 signatures but that his office still had to count and verify them.

Peter McNulty of the Massachusetts Catholic Conference said that “the bishops are very much concerned with this issue,” and a steering committee has been formed to recommend a course of action. The conference is the public-policy arm of the state’s bishops and represents the four dioceses in the commonwealth.

UK Catholic Medical Association Goes After Palliative Care

The "double effect," supported by the American Medical Association, states that a doctor may prescribe pain medication to a dying patient in doses that are lethal because the intention of the doctor is to relieve pain, not end the patient's life. Palliative medicine, the specialty field that focuses on ways to alleviate pain, is often held to account by opponents of assisted suicide because of what fails to be a "bright line" during the process of dying. How much medicine is too much? Who decides? What if the patient has no advanced directive? Would they want to be in pain or to life a few hours or days longer?

A story in Saturday's The Underground, a UK publication on "Pop Culture from a Christian perspective" quotes the president of the UK Catholic Medical Association (and a lot of excerpts from the U.S. based LifeNews) on the unfounded accusation that "mercy killing" is rampant in that country. A clip from the article, below. Note the muddling of end of life issues by confusing palliative care, hospice, assisted suicide and prevalent Catholic teaching on suffering, along with a restatement of the U.S. case of Terri Schiavo:

One reason for the occurrence of euthanasia, Walker told Scottish Catholic Observer, is that “The standards of medical ethics and of interpretation of existing legislation appear to vary greatly around the country and from one organization to the next, even in the same local area.”

Misuse of LCP

Another reason is the misuse of the Liverpool Care Pathway, which was developed in the 1990s at the Marie Curie hospice and royal Liverpool Hospital, so that palliative care for end-of-life patients could improve, the Scottish Catholic Observer said.

The LCP provides criteria that must be followed before ending life-sustaining treatment and applying palliative care, LifeSiteNews said. However, reports have indicated that LCP has been used in the cases of people who were not dying, such as dehydrating someone to death on the grounds of LCP.

Walker said, “If it is used out of context, then it could be used to the detriment of patients e.g. a patient comes into a resuscitation bay, and it is not always clear if a condition is acute and can be treated,” LifeSiteNews reported.

A recent report on crematorium records showed that 23% of all deaths in one city in the U.K. were people put on LCP without any definite diagnosis of their stage of life, LifeSiteNews said.

LifeSiteNews mentions the case of in the U.S. of Terri Schiavo, who was not dying, but who was withheld hydration, as an example of euthanasia. However, if a person is “actively dying and/or is unable to assimilate H & N, [t]hat person is actually dying and the provision of H & N provides little to no benefit and may cause suffering.” In such case, it would not be euthanasia.

The Pope's Condom Conundrum

An excerpt from Katha Pollitt's latest post on the Pope's comments that condoms can be used in some cases to prevent disease, but not to prevent pregnancy:

The doctrine of the secondary effect, whereby a Catholic may perform an immoral act if its primary effect is moral, permits a doctor to give a dying patient painkillers that may hasten death: the primary purpose is relief of suffering, not euthanasia. By the same logic, the church has always allowed for "just wars" and the deaths of innocents that inevitably take place in them. But, with the exception of those nuns in Congo, this reasoning is rejected when it comes to birth control.

If you ask me, the Pope's on a slippery slope. Katha points out that pregnancy is a deadly prospect in so much of the world. Will the Pope not recognize this as a hardship on women? What about STD prevention? The lives of young girls ruined by teen pregnancy? The doctrine of the double effect is a fine theoretical work. But it has little to do with a raped woman in Congo or a dying patient in Queens who just wants to pass without pain.

Palliative Sedation By Degrees.

From the recent issue of Annals of Internal Medicine: Timothy Quill, Daniel Brock and others respond to an article by Cellarius and Henry on the double-effect and palliative sedation. Their letter, in full below, is concise and informative and I am delighted with their assertion that sedation at the end of life should depend on informed consent and proportionality to pain. If you want more history on the discussion, see the links here.

We generally agree with Dr. Cellarius and Mr. Henry that the main justifications for the different levels of palliative sedation are proportionality and informed consent. For mild levels of distress, mild sedation is appropriate. For more severe distress, heavier sedation (even to the level of unconsciousness) may be needed. With PPS, the level of sedation and the pace of increase are directly related to the severity of otherwise unrelieved suffering. The level of sedation used will be the least amount that can relieve the distress. Although PPS may end with the patient being unresponsive, that is not the intended end point.

We also agree with Dr. Sulmasy and colleagues that the double effect can generally justify PPS (for clinicians who endorse the rule). Relief of suffering is the clinician's primary intent, and although there may be a foreseen risk for hastening death, this is not the clinician's intent (1, 2). However, we do not agree that PPS can only be justified by double-effect reasoning and would not justify it that way ourselves. Intent can distinguish PSU from euthanasia but does not mark the difference between the morally permissible and impermissible, as proponents of double-effect reasoning claim. Death may or may not be intended by patient or clinician in PSU; in some circumstances, intent may be only to relieve suffering and to respect the patient's right to refuse nutrition and hydration, whereas in others intent may be more multilayered (3). How intent applies to PSU is more controversial than how it applies to PPS, but this is less important to us than to Dr. Sulmasy and colleagues in distinguishing between permissible and impermissible actions.

Proportionate palliative sedation is adequate to deal with most but not all intractable end-of-life suffering. We stand by our assertion that PSU will still be needed from the outset in certain compelling cases in which lesser levels of sedation would be insufficient. Consider these real examples:

A terrified patient with advanced oropharyngeal cancer is bleeding from a progressively rupturing carotid artery.

A patient with advanced pulmonary fibrosis is prepared to die rather than be intubated for the third time in 1 month, provided that we promise to aggressively manage his dyspnea. He is now extremely short of breath and agitated, with a carbon dioxide level of 90 mmol/L.

A patient with amyotrophic lateral sclerosis wants to be taken off his mechanical ventilator but is very afraid of suffocation.

For us, these cases are more difficult to justify by using strict double-effect reasoning because death can be both foreseen and to some extent intended by both patient and clinician (4). Stopping at less than total sedation made no sense to the patients, their families, or the clinicians caring for them, and prolonging the patients' extreme suffering by continuing other life-prolonging therapies would have been inappropriate. In each case, the criteria of proportionality were met, informed consent was obtained, and the clinician's primary intent was to relieve the patient's severe suffering; however, to say that assisting these patients to die was completely unintended seems false (3). Rather than relying exclusively on a rule from a particular religious tradition with sometimes unrealistic requirements about intention, it seems better to develop clear guidelines that include ways of responding to some of the most challenging cases.

The Definition of Palliative Sedation.

The New York Times printed an article yesterday on the contentious use of palliative sedation. It's by the fantastic Anemona Hartocollis who has been writing about end of life care for over a year now. From the article:

Among those choices is terminal sedation, a treatment that is already widely used, even as it vexes families and a profession whose paramount rule is to do no harm.

Doctors who perform it say it is based on carefully thought-out ethical principles in which the goal is never to end someone’s life, but only to make the patient more comfortable.

But the possibility that the process might speed death has some experts contending that the practice is, in the words of one much-debated paper, a form of “slow euthanasia,” and that doctors who say otherwise are fooling themselves and their patients.

There is little information about how many patients are terminally sedated, and under what circumstances — estimates have ranged from 2 percent of terminal patients to more than 50 percent. (Doctors are often reluctant to discuss particular cases out of fear that their intentions will be misunderstood.)

While there are universally accepted protocols for treating conditions like flu and diabetes, this is not as true for the management of people’s last weeks, days and hours. Indeed, a review of a decade of medical literature on terminal sedation and interviews with palliative care doctors suggest that there is less than unanimity on which drugs are appropriate to use or even on the precise definition of terminal sedation.

Discussions between doctors and dying patients’ families can be spare, even cryptic. In half a dozen end-of-life consultations attended by a reporter over the last year, even the most forthright doctors and nurses did little more than hint at what the drugs could do. Afterward, some families said they were surprised their loved ones died so quickly, and wondered if the drugs had played a role.

Whether the patients would have lived a few days longer is one of the more prickly unknowns in palliative medicine. Still, most families felt they and the doctors had done the right thing.

Wesley J. Smith has of course weighed in on the article to try to clarify some of Hartocollis' grey areas. He does so because he (and most doctors and the US Conference of Catholic Bishops) support what is called the "double effect," the use of sedation until death in order to alleviate suffering but not hasten death, but strongly work to distinguish it from "euthanasia" or, well, hastening death. As Smith writes:

First, it shouldn’t be called terminal sedation because death isn’t the intent. The words we use matter in this debate. Second, I don’t know of any palliative expert that opposes sedation as a last resort legitimate medical tool. Indeed, if properly applied based on otherwise uncontrollable symptoms, palliative sedation isn’t slow motion euthanasia because the issue isn’t whether life is “shortened.” The issue is whether the physical suffering of the patient could not otherwise be alleviated. If not, and sedation is applied, then if death comes sooner–and as the article points out, there is usually little way to tell–it is a side effect of a legitimate treatment.

In this regard, it is important to remember that any medical treatment can have a lethal side effect. That isn’t the same thing as mercy killing. Consider: Sometimes patients die earlier than they would otherwise have during surgery intended to save life. That is no more euthanasia than dying from legitimately applied pain control

Criticisms of legitimately applied palliative sedation, as mentioned above, may be based on a vitalistic notion that anything that results in an earlier death is killing. But as noted above, that clearly isn’t true. Perhaps, more often, it is intended to blur the lines between euthanasia and palliation, to make the former easier to justify politically.

Among the intentional line blurrers is the assisted suicide advocacy organization Compassion and Choices–formerly the Hemlock Society–that clearly has ambitions to become the Planned Parenthood of death. C & C was the moving force behind pernicious legislation in California two years ago–AB 2747–that as originally written would have given a legal right to patients with one year or less to live to demand sedation and withdrawal of food and fluids–without regard to whether their symptoms warranted such radical action–so that death would be caused by dehydration. (That part of the bill was defeated.)

In fact, the lawyer for Robert Baxter argued before the Montana Supreme Court on September 2nd in an appeal case to determine the constitutionality of aid in dying that there was no "bright line" between palliative sedation and aid in dying. The only differences are the documentation required of aid in dying (or Death with Dignity in Washington and Oregon where it is legal) and the "intention of the doctor."

It is this intention that Smith and others wish to judge as part of "the culture of death" or the "double effect," one of the other. From Hartocollis, it becomes quite clear that doctors wish only to prevent suffering.

Justifying the "Bright Line" between the Double Effect and Assisted Suicide.

The University of Toronto Students for Life have been hosting a blog series on euthanasia and assisted suicide in the wake of a visit from Alex Schadenberg, Executive Director of Canada's Euthanasia Prevention Coalition. Here's the lastest, a look at the difference between refusal of treatment and the "double effect."

The USCCB recently changed its directive on refusal of treatment to not include artificial nutrition and hydration, now considered "obligatory" care and not subject to removal, thus rendering advance directives at all 600 Catholic hospitals moot.

“Living is not an obligation. I don’t want to die hooked up to a bunch of machines or forced to stay alive when I know it’s time to pass on.”

There is no legal obligation to receive treatment in Canada. A competent patient or the proxy of an incompetent patient has the legal power to accept or refuse any treatment, or ask that it be discontinued.

Many people don’t understand what euthanasia is. The refusal of treatment is not euthanasia or assisted suicide. It’s the refusal of treatment. That’s a right we affirm; this argument misunderstands the pro-life position.

The withdrawal or withholding of extraordinary or disproportionate treatment, when its burdens outweigh its benefit, is not euthanasia because the intention is not to cause death but to allow the person to die naturally; in euthanasia the intention is to cause death – the patient does not die naturally but rather is killed by another human being before his or her time.

A means/ends/consequence breakdown is useful here. In euthanasia and assisted suicide, the goalmay be to end a patient’s suffering, but a patient’s death is directly sought as the means of ending that suffering. Death is a desired consequence of the act. But when refusing treatment, death is anunintended foreseen consequence. The intent is to refuse treatment, to alleviate pain or undue burden, and the result is that the disease or natural ailment then takes its toll. The ailment causes death, not the act of any person.

It’s the difference between killing someone, and letting nature take its course.

When disproportionate treatment is withdrawn or withheld, the cause of death is the underlying disease or condition; in euthanasia the cause of death is the lethal injection, pill or other means used. There is a great difference between allowing to die and making die.

It’s good practice responding to these points before reading ahead…

Artificial nutrition and hydration are considered ordinary care – not treatment – and must, in principle, be given to the patient. Food and water are basic necessities of life which do not treat any specific condition. A person should never die because they have been deprived of nutrition and hydration. However in certain circumstances, such as near the end of life, the body may not be able to assimilate food and water or the procedures used can be too burdensome to continue. In these situations, artificial nutrition and hydration can be discontinued.

An important qualifier: starving someone to death is not the same thing as refusing treatment (but for exceptional circumstances near the end of life).

Peter Singer, Catholic Directives, and the "Slippery Slope"

I was lucky enough to catch a showing last night of the movie "Examined Life" by Astra Taylor at the Brooklyn Society of Ethical Culture, hosted by KillingtheBuddha.com (my sometimes other home). It's a beautifully shot series of interviews with a number of philosophers including Cornell West, Martha Nussbaum, Kwame Anthony Appiah, Judith Butler and Peter Singer. They are outside, not in their academic halls or behind desks, talking about ethics, life's meaning, revolution, justice, and cultural relativism, roving around cities in cabs, digging through trash, rowing boats on a lake, or perusing shops on 5th Avenue. While the movie is demanding, the take away is worthwhile.

And in one of life's overlaps, Peter Singer, one of the featured philosophers in the movie, has an article up at the DailyStar today titled, "Voluntary Consent is Neglected in the Euthanasia Debate."

Singer writes that while the Catholic Church and opponents of aid in dying often cite the "slippery slope," the argument that allowing patient-elected aid in dying will result in state or doctor directed assisted suicide, this argument has been disproven in countries and US states where aid in dying is legal. The greater danger, explains Singer, is in what the Catholic Church has decided is theologically acceptable:

In 1957, a group of doctors asked Pope Pius XII whether it is permissible to use narcotics to suppress pain and consciousness “if one foresees that the use of narcotics will shorten life.” The pope said that it was. In its Declaration on Euthanasia, issued in 1980, the Vatican reaffirmed that view.

The Vatican’s position is an application of what is known as “the doctrine of double effect.” An action that has two effects, one good and the other bad, may be permissible if the good effect is the one that is intended and the bad effect is merely an unwanted consequence of achieving the good effect. Significantly, neither the pope’s remarks, nor the Declaration on Euthanasia, place any emphasis on the importance of obtaining the voluntary and informed consent of patients, where possible, before shortening their lives.

According to the doctrine of double effect, two doctors may, to all outward appearances, do exactly the same thing: that is, they may give patients in identical conditions an identical dose of morphine, knowing that this dose will shorten the patient’s life. Yet one doctor, who intends to relieve the patient’s pain, acts in accordance with good medical practice, whereas the other, who intends to shorten the patient’s life, commits murder.

(Incidentally, the Catholic Church supports the use of the "double effect" for pregnant women whose life is in danger: an ectopic pregnancy can be ended by surgery because the objective is to save the woman's life; less invasive medicinal treatment is not allowed because the objective is to kill the fetus.)

Singer uses the example of doctors at Memorial Medical Center in New Orleans who ended the lives of immovable patients during Katrina rather than let them suffer alone and unattended in the hospital after nurses and other patients were evacuated. Of one doctor and what occurred at Memorial, Singer writes:

Cook had little time for such subtleties. Only “a very naive doctor” would think giving a person a lot of morphine was not “prematurely sending them to their grave,” he told Fink, and then bluntly added: “We kill ‘em.” In Cook’s opinion, the line between something ethical and something illegal is “so fine as to be imperceivable.”

At Memorial Medical Center, physicians and nurses found themselves under great pressure. Exhausted after 72 hours with little sleep, and struggling to care for their patients, they were not in the best position to make difficult ethical decisions. The doctrine of double effect, properly understood, does not justify what the doctors did; but, by inuring them to the practice of shortening patients’ lives without obtaining consent, it seems to have paved the way for intentional killing.

And concludes:

Roman Catholic thinkers have been among the most vocal in invoking the “slippery slope” argument against the legalization of voluntary euthanasia and physician-assisted dying. They would do well to examine the consequences of their own doctrines.

By poking a finger at the Catholic Church's directives, Singer means to turn the "slippery slope" argument around on them, insinuating that patients' consent is already undermined by Catholic doctrine. He pits the Church and medical profession against one another (at a time when the Catholic Church is working double duty to "protect" doctors with conscience clauses so long as they do the Church's bidding).

Yet Singer fails to address what ethical decisions the doctors at Memorial should have made: should they have allowed the immobile patients to die in suffering? Should they have risked their own lives and the lives of their staff by remaining with patients?

The Catholic Church has never been a strong defender of patients' rights in any way. They are too invested in their own fight for jurisdiction over suffering, working to impose their own doctrines over end of life situations for both patients and doctors.

The medical profession too has not strongly come out on the side of patient's rights; they have their own claims to suffering that are enforced by the contemporary nature of their profession: aggressive treatment, avoidance of developments and investment in hospice and palliative care, reticence to talk about death, what the doctor views as failure.

The Death with Dignity, aid in dying movement - a movement that has asserted around the world a patient's right to choose how they die - works to prepare patients for those questions and establishes that the patient is the one who controls their death decisions with advanced directives, medical proxies, and access to information. This is done in conjunction with doctors and family members in a way that prepares all parties to accept and enact a patient's decisions.

What occurred at Memorial hospital had nothing to do with patients' rights, as Singer points out. It was a crisis situation that forced doctors to determine the best way to keep patients from needless suffering. It's a practice, mercy killing, as old as time.

The Catholic Church's directives on the "double effect" had little bearing on the doctor's decisions: with or without Catholic approval, the "double effect" is used in hospice and retirement facilities and hospitals across the country every day to prevent suffering and to protect doctors from prosecution. It shocks us because we don't like to talk about it; because we don't often have to face how we die in such a graphic manner as the Memorial event portrays.

If Singer's purpose is to show the complicity the Catholic Church has in the erosion of patient's rights - in essence, that they have created their own slippery slope - I fear he has chosen the wrong example; yet the point is incredibly valid. (Note the USCCB's recent decision to reclassify removal of patients from artificial nutrition and hydration as impermissible, despite the patient's advance directives.)

If the purpose of the article is to assert patient's rights, again, the sad situation in New Orleans would not have been helped if all the patient's choices had been written on their charts. And lastly, if he intends to vilify doctors like Cook who had few if any options of how to keep abandoned patients comfortable, his argument is unconvincing.

In "Examined Life," Slavoj Zizek addresses what he calls, "the temptation of meaning." Once we assert ideas of "meaning" on life, we tend to stop questioning that meaning, we cling to old traditions, beliefs or practices that may no longer apply. I wonder if Singer's ethics have settled on a meaning of patients' rights that advancement in medicine and the stagnation of Catholic doctrine have too long dictated and obfuscated. Perhaps it's time to find a new meaning.