In response, well-meaning pain-control experts created a protocol—known as the Liverpool Care Pathway—which, among other provisions, informed doctors when to apply a legitimate medical palliative intervention known as palliative sedation. The protocol was recommended for adoption by the National Institute on Clinical Excellence (NICE)—the NHS’s rationing and quality oversight board—and there you go; problem solved.1
Except it wasn’t. Indeed, as so often happens in centralized systems, the bureaucratic remedy for one problem led to even worse trouble down the line. The LCP’s palliative sedation protocol has, in practice, too often been applied as “terminal sedation”—a form of backdoor euthanasia. Understanding how and why that happened serves as an important cautionary tale about potent dangers of centralized healthcare.
“Palliative” Versus “Terminal” Sedation
In order to understand what went so badly wrong in the implementation of the LCP—and why it is important—we must first detail the crucial moral and factual distinctions between the legitimate pain-controlling medical treatment known as palliative sedation (PS) and a slow-motion method of euthanasia sometimes called “terminal sedation” (TS). The two are too often conflated, particularly by euthanasia advocates seeking to blur moral distinctions and definitions.
A very good article published in the Journal of Pain & Palliative Care Pharmacotherapy clearly distinguishes between sedation applied to control pain and sedation used as a method of killing.2 First, author Michael P. Hahn, a respiratory therapist with Loma Linda University, notes that palliative sedation applies the least amount of sedative to obtain the needed relief:
Ideally, the level of palliative sedation is provided in a fashion that is titrated to a minimal level that permits the patient to tolerate unbearable symptoms, yet the patient can continue to periodically communicate.3
PS employs varying degrees of sedation and time under that sedation level, depending on the circumstances:
The three most common levels of providing PS include mild, intermediate, and deep. When mild sedation is used, the patient is awake and the level of consciousness is lowered to a somnolent state, with verbal or nonverbal communication still possible. With intermediate sedation, the patient is asleep or stuporous and can still be awakened to communicate briefly. The third level is deep sedation, which refers to the patient being near or in complete unconsciousness and does not communicate verbally or nonverbally. Besides regulating the degree of sedation, palliative sedation may also be provided intermittently or continuously.4
In other words, palliative sedation is a medical treatment applied when necessary to relieve intense suffering; it offers individualized relief from pain and suffering (caused by conditions such as severe agitation) as the situation may warrant. It is not directed at ending the patient’s life. Death is not the goal. If the patient dies, it is usually from the underlying condition or as an unwanted side effect, which can happen with any medical treatment. In other words, PS is no more euthanasia if a patient dies from complications than if a patient dies during heart surgery.
In contrast, terminal sedation intends to kill by putting the person into a permanent artificial coma and withholding food and fluids. TS-caused deaths usually are caused by dehydration over a period of about two weeks. In this sense, Hahn notes, palliative sedation and terminal sedation are mirror opposites (my emphasis below):
Slow euthanasia and PAS specifically involve the intent to end life deliberately with lethal (nontherapeutic) doses of drugs, or with rapid administration of drugs, that exceed the amount needed to alleviate the symptoms. When death unintentionally occurs following a proportionate administration of drugs in PS, the patient dies from the underlying illness and the death certificate does not list the cause of death as “drug overdose.”5
The National Hospice and Palliative Care Organization supports the application of palliative sedation in “rare” cases for “the limited number of imminently dying patients who have pain and suffering that is (a) unresponsive to other palliative interventions less suppressive of consciousness and (b) intolerable.” Again, the Position Statement of the NHPCO specifically notes that neither death nor unconsciousness is the goal of the intervention:
The goal of palliative sedation is to provide relief from symptoms that are otherwise intolerable and intractable. Since the goal is symptom relief (and not unconsciousness per se), sedation should be titrated to the minimum level of consciousness reduction necessary to render symptoms tolerable. For some patients, this may be total unconsciousness. For most, however, it will be less than total unconsciousness, allowing the patient to rest comfortably but to be aroused.6
In summary, while both palliative sedation and terminal sedation involve the use of consciousness-altering drugs, they are apples and oranges:
• PS is individualized and the level of sedation varied according to the patient’s present medical condition. In contrast, TS places the patient in a deep artificial coma until death.
With the above in mind, we now turn to the Liverpool Care Pathway and what went wrong.
The Liverpool Care Pathway Only Authorized Palliative Sedation
It is clear from the terms of the policy that the LCP’s authors never intended it to become a form of terminal sedation. For example, an educational document prepared for healthcare professionals by the Marie Curie Palliative Care Institute (Liverpool)—under which auspices the Pathway was created—notes that the specific “aim” of the Pathway is to “improve care of the dying in the last hours or days of life.7 It also stated unequivocally that:
• “The LCP neither hastens nor postpones death;”
It is also important to reiterate that the LCP was designed to be applied in a patient-specific and nuanced manner. Thus, as the educational document notes:
A blanket policy of clinically assisted (artificial) nutrition or of no clinically assisted (artificial) hydration is ethically indefensible and in the case of patients lacking capacity prohibited under the Mental Capacities Act (2005).9
Indeed, an early audit of 4000 dying patients found that only 4 percent needed deep levels of sedation to control pain and distressing symptoms at the very end of life.10
Alas, that is not how the LCP has been carried out in many NHS hospitals and nursing homes. The trouble began when NICE urged hospitals to adopt the Pathway as a means of caring for dying patients. Perhaps because it came to be perceived as a bureaucratic order rather than a guideline encouraging individualized patient care, deep sedation apparently came to be seen as the norm in some institutions—to the point that at least in some cases, the LCP became a means of backdoor euthanasia, threatening a full-blown medical scandal.
The serious problems with the Pathway first came to light in 2009 when the Telegraph published an open letter signed by palliative physicians and other pain-control experts. It complained that hospital personnel were applying the LCP in a “tick-box” manner that threatened the lives of patients who did not need sedation based on their medical conditions:
Just as, in the financial world, so-called algorithmic banking has caused problems by blindly following a computer model, so a similar tick-box approach to the management of death is causing a national crisis in care. The government is rolling out a new treatment pattern of palliative care into hospitals, nursing homes, and residential homes. It is based on experience in a Liverpool hospice. If you tick all the right boxes in the Liverpool Care Pathway, the inevitable outcome of the consequent treatment is death.
This, the letter writers warned, had resulted in some patients who were not actively dying—a core requirement for application of the LCP—being sedated:
As a result, a nationwide wave of discontent is building up, as family and friends witness the denial of fluids and food to patients. Syringe drivers are being used to give continuous terminal sedation, without regard to the fact that the diagnosis could be wrong . . . . Experienced doctors know that sometimes, when all but essential drugs are stopped, “dying” patients get better.11
A concurrent Telegraph story reported that an alarming 16.5 percent of patients who died in 2007-08 expired while under “continuous deep sedation.” Tellingly, the Telegraph reported that twice as many patients in the U.K. died while under deep sedation as in the Netherlands—a country where terminal sedation sometimes serves as a substitute for active euthanasia.12 (It is worth noting that the use of TS as a means of euthanasia has increased in the Netherlands in the intervening years. A recent study found that 12.3 percent of Dutch deaths now result from sedation and dehydration—which is still below the rate in the UK!)13
Soon, disturbing stories in the press added credence to the open letter writers’ fears. Again, the Telegraph led the way, reporting Rosemary Munkenbeck’s claim that her father, hospitalized with a stroke, was quickly deprived of fluids and medications. She further claimed that doctors wanted to sedate him under the Pathway protocols until he died. The family refused, but not before Munkenbeck’s father went five days without sustenance.14
The Sunday Times of London soon reported another case, headlined, “Daughter Saves Mother, 80, Left by Doctors to Starve”:
An 80-year-old grandmother who doctors identified as terminally ill and left to starve to death has recovered after her outraged daughter intervened. Hazel Fenton, from East Sussex, is alive nine months after medics ruled she had only days to live, withdrew her antibiotics and denied her artificial feeding. The former school matron had been placed on a controversial care plan intended to ease the last days of dying patients. Doctors say Fenton is an example of patients who have been condemned to death on the Liverpool Care Pathway plan. They argue that while it is suitable for patients who do have only days to live, it is being used more widely in the NHS, denying treatment to elderly patients who are not dying.15
Fenton lived to tell the tale. Not so 76-year-old Jack Jones. As reported by the Daily Mail, Jones was hospitalized in the belief that his previous cancer had recurred and was now terminal. The family claimed he was soon denied food and water and put into deep sedation. But his autopsy showed that he did not have cancer at all, but actually had a treatable infection. The hospice denied wrongdoing but paid £18,000 to Jones’s widow.16
As time progressed, it became abundantly clear that despite the LCP’s intent that the protocol not be applied in a blanket manner, precisely such unthinking applications were happening in actual clinical practice. Another story in the Telegraph reported that two-thirds of NHS hospitals were receiving financial incentives from the government to place patients on the LCP:
The majority of NHS hospitals in England are being given financial rewards for placing terminally-ill patients on a controversial ‘pathway’ to death, it can be disclosed. The figures, obtained under the Freedom of Information Act, reveal the full scale of financial inducements for the first time. They suggest that about 85 per cent of trusts have now adopted the regime, which can involve the removal of hydration and nutrition from dying patients. More than six out of 10 of those trusts—just over half of the total—have received or are due to receive financial rewards for doing so amounting to at least £12million.
And the statistics show that the Pathway has indeed become backdoor euthanasia:
At many hospitals more than 50 per cent of all patients who died had been placed on the pathway and in one case the proportion of foreseeable deaths on the pathway was almost nine out of ten.17
Not only that, but the Telegraph published news that while some hospitals applied the LCP in a professional manner, others offered little training to staff and applied the protocol as a checklist item “to be done” to terminal patients.18 Clearly, this was not what the authors of the LCP had intended.
Bureaucratic “Death Targets”
This article cannot determine the full nature and extent of the problems with the LCP, a still unfolding story and the subject of multiple investigations and inquiries. But we can come to some preliminary conclusions as to why a clearly well-intentioned, appropriately defined, and medically ethical guidance instrument came to be used, at least in some cases, to kill.
The prime suspect seems to be the nature of bureaucracy. Jacqueline Laing, a senior lecturer in law at London Metropolitan University, points to the problem of “managerialized death targets” that were apparently established by the NHS’s centralized bureaucracy:
Part of the difficulty is that, where a patient is diagnosed as terminal and imminently dying, the combination of morphine and dehydration is likely to undermine a patient’s capacity. Persistent dehydration of even the fittest sedated patient will kill him. This was the problem with the Pathway from the very outset. It reversed the burden of proof, on the strength of a diagnosis that is not always certain, so that an increasingly incapacitated patient would have to speak on his own behalf in favour of water. Even assuming he was healthy enough, in an environment in which the Pathway is normal his pleas may not be heard.19
To put it another way, doctors applying the LCP ceased to treat patients as individuals, but instead yielded to bureaucratic imperatives—precisely the approach that the Marie Curie Palliative Care Institute stated should not happen.
Laing also warned cogently that more trouble lay ahead unless medical personnel applied the LCP in a patient-specific manner:
Recent revelations of financial incentives and staggering compliance in rolling out the managerial programme radically alter the debate. Diagnostic concerns in the context of arguably self-fulfilling sedation-dehydration regimes and overarching financial and political pressure to implement the Pathway, suggest that the regime may have acquired a lethal power of its own. This lethal character is almost certainly one that exists independently of the best intentions of those who formulated or apply it. Some of history’s most important lessons highlight the problems of institu-tionalising programmes that invite homicide and reverse burdens of proof in ways that undermine the vulnerable.
In other words, the bureaucratic imperative transformed a benign and beneficial medical treatment into a method of intentionally causing death—without necessarily intending that lethal outcome.
The LCP and the Affordable Care Act
There is a warning here for the United States under the Affordable Care Act (ACA), by which the federal government centralized management of the American health-care system. While the ACA does not create a socialized system akin to the UK’s NHS, it does establish a centralized federal bureaucracy authorized to give incentives to doctors and medical institutions to follow pre-defined approaches of providing “excellence.” Indeed, many of the architects and implementers of the ACA have stated that they hope to emulate NICE-style cost containment/quality care methods—the very approach that subverted proper application of the LCP.
The greatest potential danger of managerializing healthcare (to borrow Laing’s term) may be posed by the soon-to-be-implemented Medicare Independent Payment Advisory Board. IPAB is not a garden-variety “advisory” commission like so many seen in government these days. Rather, the unique “fast track authority” granted to IPAB authorizes it to impose its “recommendations” into law. Specifically:
• By January 15 each year, the Independent Payment Advisory Board must submit a proposal to Congress and the president for reaching Medicare savings targets in the coming year. The majority leaders in the House and Senate must introduce bills incorporating the board’s proposal the day they receive it.
• Congress cannot “consider any bill, resolution, amendment, or conference report . . . that would repeal or otherwise change the recommendations of the board” if such changes fail to meet the board’s budgetary target.
• By April 1, the committees of jurisdiction must complete their consideration of the proposal. Any committee that fails to meet the deadline is barred from further considering the bill.
• The secretary of health and human services must implement the Independent Payment Advisory Board’s proposal, as passed by Congress and signed by the president, on August 15 of the year in which the proposal is submitted.
• If Congress does not pass the proposal or a substitute plan meeting the Independent Payment Advisory Board’s financial target before August/15, or if the president vetoes the proposal passed by Congress, the original Independent Payment Advisory Board recommendations automatically take effect.
IPAB defenders claim that the IPAB’s iron fist is necessary to ensure cost containment. They also note that the board does not have a completely free hand. For example, as it pursues its mission of frugality, it is not currently allowed to recommend health care rationing, changes in Medicare benefits, or revision of eligibility standards.
That is hardly reassuring. Before IPAB is even up and running, powerful voices began calling for IPAB to be granted expanded powers—including explicit NICE-style powers of health care rationing. Thus, Christina D. Romer, former chairwoman of President Barack Obama’s Council of Economic Advisers, wrote in the New York Times: “Once the payment advisory board has a track record . . . it could be empowered to suggest changes in benefits or in how Medicare services are provided—say, along the lines of successful demonstration projects.”21
Even more explicitly, former Obama Treasury Department adviser and New York Times columnist Steven Rattner wrote, “We need death panels,” urging that IPAB be transformed into a rationing board. “No one wants to lose an aging parent,” he wrote. But the cost of caring extensively for the elderly “imposes an enormous societal cost that few other nations have been willing to bear,” and so we too must jump into the rationing pool:
Take Britain, which provides universal coverage with spending at proportionately almost half of American levels. Its National Institute for Health and Clinical Excellence uses a complex quality-adjusted life year system to put an explicit value (up to about $48,000 per year) on a treatment’s ability to extend life. At the least, the Independent Payment Advisory Board should be allowed to offer changes in services and costs. We may shrink from such stomach-wrenching choices, but they are inescapable.22
Similarly, the New England Journal of Medicine (NEJM)—an explicit supporter of NICE-style health care rationing—has opined that “strengthening of IPAB is of critical importance.”23 Moreover, the NEJM has supported a system of rationing utilized by NICE based on the discriminatory quality of life year (QALY), which judges healthier, younger, and more able-bodied lives as having greater value than those on life’s edges. For example, an editorial favoring using QALYs in the context of the ACA argued:
Such thinking demonstrates how centralized healthcare management practices unleash broad technocratic impulses. Rather than reinforcing standards of professional excellence in medicine, health care instead comes to be dominated by the bureaucratic imperatives, in turn leading to connect-the-dots medicine.
Indeed, because the Liverpool Care Pathway often has been perceived through a distorting bureaucratic prism, it has become a pronounced threat to the most weak and vulnerable patients precisely when they are at their most weak and vulnerable. We ignore that lesson in the United States at our own peril.