041.LCP: Liverpool Care Pathway: The Road to Backdoor Euthanasia Human Life Review

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25 DEC 2013 WESLEY J. SMITH

Liverpool Care Pathway: The Roadto Backdoor Euthanasia

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Several years ago, bureaucrats at the UnitedKingdom’s National Health Service—a socializedsystem in which hospitals are funded and operatedby the state—reacted to legitimate and widespreadcomplaints from family members that their lovedones were dying in agony in NHS hospitals.

In response, well-meaning pain-control expertscreated a protocol—known as the Liverpool CarePathway—which, among other provisions, informeddoctors when to apply a legitimate medical palliativeintervention known as palliative sedation. Theprotocol was recommended for adoption by theNational Institute on Clinical Excellence (NICE)—the NHS’s rationing and quality oversight board—and there you go; problem solved.

Except it wasn’t. Indeed, as so often happens incentralized systems, the bureaucratic remedy for oneproblem led to even worse trouble down the line.The LCP’s palliative sedation protocol has, inpractice, too often been applied as “terminal

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sedation”—a form of backdoor euthanasia.Understanding how and why that happened servesas an important cautionary tale about potent dangersof centralized healthcare.

“Palliative” Versus “Terminal” Sedation

In order to understand what went so badly wrong inthe implementation of the LCP—and why it isimportant—we must first detail the crucial moral andfactual distinctions between the legitimate pain-controlling medical treatment known as palliativesedation (PS) and a slow-motion method ofeuthanasia sometimes called “terminal sedation”(TS). The two are too often conflated, particularlyby euthanasia advocates seeking to blur moraldistinctions and definitions.

A very good article published in the Journal of Pain& Palliative Care Pharmacotherapy clearlydistinguishes between sedation applied to controlpain and sedation used as a method of killing. First,author Michael P. Hahn, a respiratory therapist withLoma Linda University, notes that palliative sedationapplies the least amount of sedative to obtain theneeded relief:

Ideally, the level of palliative sedation isprovided in a fashion that is titrated to a minimallevel that permits the patient to tolerateunbearable symptoms, yet the patient cancontinue to periodically communicate.

PS employs varying degrees of sedation and timeunder that sedation level, depending on thecircumstances:

The three most common levels of providing PSinclude mild, intermediate, and deep. When mildsedation is used, the patient is awake and thelevel of consciousness is lowered to a somnolentstate, with verbal or nonverbal communicationstill possible. With intermediate sedation, thepatient is asleep or stuporous and can still beawakened to communicate briefly. The thirdlevel is deep sedation, which refers to the patientbeing near or in complete unconsciousness anddoes not communicate verbally or nonverbally.Besides regulating the degree of sedation,palliative sedation may also be providedintermittently or continuously.

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In other words, palliative sedation is a medicaltreatment applied when necessary to relieve intensesuffering; it offers individualized relief from painand suffering (caused by conditions such as severeagitation) as the situation may warrant. It is notdirected at ending the patient’s life. Death is notthe goal. If the patient dies, it is usually from theunderlying condition or as an unwanted side effect,which can happen with any medical treatment. Inother words, PS is no more euthanasia if a patientdies from complications than if a patient dies duringheart surgery.

In contrast, terminal sedation intends to kill byputting the person into a permanent artificial comaand withholding food and fluids. TS-caused deathsusually are caused by dehydration over a period ofabout two weeks. In this sense, Hahn notes,palliative sedation and terminal sedation are mirroropposites (my emphasis below):

Palliative sedation is not a euphemism that ismorally equivalent to euthanasia, nor is it “sloweuthanasia” [e.g., terminal sedation], orphysician-assisted suicide (PAS). There is asharp distinction between euthanasia and PS orPAS and PS, the distinction between the threecan be ascertained by recognizing the primaryintention and outcome of each measure.Although PAS and euthanasia are intended torelieve suffering, it is accomplished by causingdeath, whereas PS is provided in aproportionate manner without an intention ofcausing death . . . .

Slow euthanasia and PAS specifically involvethe intent to end life deliberately with lethal(nontherapeutic) doses of drugs, or with rapidadministration of drugs, that exceed the amountneeded to alleviate the symptoms. When deathunintentionally occurs following a proportionateadministration of drugs in PS, the patient diesfrom the underlying illness and the deathcertificate does not list the cause of death as“drug overdose.”

The National Hospice and Palliative CareOrganization supports the application of palliativesedation in “rare” cases for “the limited number ofimminently dying patients who have pain andsuffering that is (a) unresponsive to other palliative

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interventions less suppressive of consciousness and(b) intolerable.” Again, the Position Statement of theNHPCO specifically notes that neither death norunconsciousness is the goal of the intervention:

The goal of palliative sedation is to provide relieffrom symptoms that are otherwise intolerableand intractable. Since the goal is symptom relief(and not unconsciousness per se), sedationshould be titrated to the minimum level ofconsciousness reduction necessary to rendersymptoms tolerable. For some patients, this maybe total unconsciousness. For most, however, itwill be less than total unconsciousness, allowingthe patient to rest comfortably but to bearoused.6

In summary, while both palliative sedation andterminal sedation involve the use of consciousness-altering drugs, they are apples and oranges:

• PS is individualized and the level of sedation variedaccording to the patient’s present medical condition.In contrast, TS places the patient in a deep artificialcoma until death.• The purpose of PS is to treat the patient’s pain andsymptoms while simultaneously offering the bestpossible quality of life, whereas the explicit goal ofTS is making the patient dead.• Patients who die while undergoing PS usuallyexpire from their underlying physical condition,whereas most patients undergoing TS die ofdehydration. (Hence, Hahn’s use of the term “sloweuthanasia.”)• PS is a legitimate and ethical medical treatment.TS is slow euthanasia, which is not legal or ethical inmost countries.

With the above in mind, we now turn to theLiverpool Care Pathway and what went wrong.

The Liverpool Care Pathway OnlyAuthorized Palliative Sedation

It is clear from the terms of the policy that theLCP’s authors never intended it to become a formof terminal sedation. For example, an educationaldocument prepared for healthcare professionals bythe 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

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of life. It also stated unequivocally that:

• “The LCP neither hastens nor postpones death;”• “The LCP does not recommend the use ofcontinuous deep sedation;”• “The LCP does not preclude the use of artificialhydration;”• “The LCP supports continuous reassessment.”

It is also important to reiterate that the LCP wasdesigned to be applied in a patient-specific andnuanced manner. Thus, as the educational documentnotes:

A blanket policy of clinically assisted (artificial)nutrition or of no clinically assisted (artificial)hydration is ethically indefensible and in the caseof patients lacking capacity prohibited under theMental Capacities Act (2005).

Indeed, an early audit of 4000 dying patients foundthat only 4 percent needed deep levels of sedation tocontrol pain and distressing symptoms at the veryend of life.

Backdoor Euthanasia

Alas, that is not how the LCP has been carried outin many NHS hospitals and nursing homes. Thetrouble began when NICE urged hospitals to adoptthe Pathway as a means of caring for dying patients.Perhaps because it came to be perceived as abureaucratic order rather than a guidelineencouraging individualized patient care, deepsedation apparently came to be seen as the norm insome institutions—to the point that at least in somecases, the LCP became a means of backdooreuthanasia, threatening a full-blown medical scandal.

The serious problems with the Pathway first cameto light in 2009 when the Telegraph published anopen letter signed by palliative physicians and otherpain-control experts. It complained that hospitalpersonnel were applying the LCP in a “tick-box”manner that threatened the lives of patients who didnot need sedation based on their medical conditions:

Just as, in the financial world, so-calledalgorithmic banking has caused problems byblindly following a computer model, so a similartick-box approach to the management of deathis causing a national crisis in care. The

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government is rolling out a new treatmentpattern of palliative care into hospitals, nursinghomes, and residential homes. It is based onexperience in a Liverpool hospice. If you tick allthe right boxes in the Liverpool Care Pathway,the inevitable outcome of the consequenttreatment is death.

This, the letter writers warned, had resulted in somepatients who were not actively dying—a corerequirement for application of the LCP—beingsedated:

As a result, a nationwide wave of discontent isbuilding up, as family and friends witness thedenial of fluids and food to patients. Syringedrivers are being used to give continuousterminal sedation, without regard to the fact thatthe diagnosis could be wrong . . . . Experienceddoctors know that sometimes, when all butessential drugs are stopped, “dying” patients getbetter.

A concurrent Telegraph story reported that analarming 16.5 percent of patients who died in 2007-08 expired while under “continuous deep sedation.”Tellingly, the Telegraph reported that twice as manypatients in the U.K. died while under deep sedationas in the Netherlands—a country where terminalsedation sometimes serves as a substitute for activeeuthanasia. (It is worth noting that the use of TS asa means of euthanasia has increased in theNetherlands in the intervening years. A recent studyfound that 12.3 percent of Dutch deaths now resultfrom sedation and dehydration—which is still belowthe rate in the UK!)

Soon, disturbing stories in the press added credenceto the open letter writers’ fears. Again, theTelegraph led the way, reporting RosemaryMunkenbeck’s claim that her father, hospitalizedwith a stroke, was quickly deprived of fluids andmedications. She further claimed that doctorswanted to sedate him under the Pathway protocolsuntil he died. The family refused, but not beforeMunkenbeck’s father went five days withoutsustenance.

The Sunday Times of London soon reported anothercase, headlined, “Daughter Saves Mother, 80, Leftby Doctors to Starve”:

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An 80-year-old grandmother who doctorsidentified as terminally ill and left to starve todeath has recovered after her outraged daughterintervened. Hazel Fenton, from East Sussex, isalive nine months after medics ruled she hadonly days to live, withdrew her antibiotics anddenied her artificial feeding. The former schoolmatron had been placed on a controversial careplan intended to ease the last days of dyingpatients. Doctors say Fenton is an example ofpatients who have been condemned to death onthe Liverpool Care Pathway plan. They arguethat while it is suitable for patients who do haveonly days to live, it is being used more widely inthe NHS, denying treatment to elderly patientswho are not dying.

Fenton lived to tell the tale. Not so 76-year-old JackJones. As reported by the Daily Mail, Jones washospitalized in the belief that his previous cancer hadrecurred and was now terminal. The family claimedhe was soon denied food and water and put intodeep sedation. But his autopsy showed that he didnot have cancer at all, but actually had a treatableinfection. The hospice denied wrongdoing but paid£18,000 to Jones’s widow.

As time progressed, it became abundantly clear thatdespite the LCP’s intent that the protocol not beapplied in a blanket manner, precisely suchunthinking applications were happening in actualclinical practice. Another story in the Telegraphreported that two-thirds of NHS hospitals werereceiving financial incentives from the governmentto place patients on the LCP:

The majority of NHS hospitals in England arebeing given financial rewards for placingterminally-ill patients on a controversial‘pathway’ to death, it can be disclosed. Thefigures, obtained under the Freedom ofInformation Act, reveal the full scale of financialinducements for the first time. They suggest thatabout 85 per cent of trusts have now adoptedthe regime, which can involve the removal ofhydration and nutrition from dying patients.More than six out of 10 of those trusts—justover half of the total—have received or are dueto receive financial rewards for doing soamounting to at least £12million.

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And the statistics show that the Pathway has indeedbecome backdoor euthanasia:

At many hospitals more than 50 per cent of allpatients who died had been placed on thepathway and in one case the proportion offoreseeable deaths on the pathway was almostnine out of ten.

Not only that, but the Telegraph published newsthat while some hospitals applied the LCP in aprofessional manner, others offered little training tostaff and applied the protocol as a checklist item “tobe done” to terminal patients.18 Clearly, this wasnot what the authors of the LCP had intended.

Bureaucratic “Death Targets”

This article cannot determine the full nature andextent of the problems with the LCP, a stillunfolding story and the subject of multipleinvestigations and inquiries. But we can come tosome preliminary conclusions as to why a clearlywell-intentioned, appropriately defined, andmedically ethical guidance instrument came to beused, at least in some cases, to kill.

The prime suspect seems to be the nature ofbureaucracy. Jacqueline Laing, a senior lecturer inlaw at London Metropolitan University, points to theproblem of “managerialized death targets” that wereapparently established by the NHS’s centralizedbureaucracy:

Part of the difficulty is that, where a patient isdiagnosed as terminal and imminently dying, thecombination of morphine and dehydration islikely to undermine a patient’s capacity.Persistent dehydration of even the fittest sedatedpatient will kill him. This was the problem withthe Pathway from the very outset. It reversedthe burden of proof, on the strength of adiagnosis that is not always certain, so that anincreasingly incapacitated patient would have tospeak on his own behalf in favour of water.Even assuming he was healthy enough, in anenvironment in which the Pathway is normal hispleas may not be heard.

To put it another way, doctors applying the LCPceased to treat patients as individuals, but insteadyielded to bureaucratic imperatives—precisely the

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approach that the Marie Curie Palliative CareInstitute stated should not happen.

Laing also warned cogently that more trouble layahead unless medical personnel applied the LCP in apatient-specific manner:

Recent revelations of financial incentives andstaggering compliance in rolling out themanagerial programme radically alter the debate.Diagnostic concerns in the context of arguablyself-fulfilling sedation-dehydration regimes andoverarching financial and political pressure toimplement the Pathway, suggest that the regimemay have acquired a lethal power of its own.This lethal character is almost certainly one thatexists independently of the best intentions ofthose who formulated or apply it. Some ofhistory’s most important lessons highlight theproblems of institu-tionalising programmes thatinvite homicide and reverse burdens of proof inways that undermine the vulnerable.

In other words, the bureaucratic imperativetransformed a benign and beneficial medicaltreatment into a method of intentionally causingdeath—without necessarily intending that lethaloutcome.

The LCP and the Affordable Care Act

There is a warning here for the United States underthe Affordable Care Act (ACA), by which thefederal government centralized management of theAmerican health-care system. While the ACA doesnot create a socialized system akin to the UK’sNHS, it does establish a centralized federalbureaucracy authorized to give incentives to doctorsand medical institutions to follow pre-definedapproaches of providing “excellence.” Indeed, manyof the architects and implementers of the ACA havestated that they hope to emulate NICE-style costcontainment/quality care methods—the veryapproach that subverted proper application of theLCP.

The greatest potential danger of managerializinghealthcare (to borrow Laing’s term) may be posedby the soon-to-be-implemented MedicareIndependent Payment Advisory Board. IPAB is nota garden-variety “advisory” commission like somany seen in government these days. Rather, the

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unique “fast track authority” granted to IPABauthorizes it to impose its “recommendations” intolaw. Specifically:

• By January 15 each year, the IndependentPayment Advisory Board must submit a proposal toCongress and the president for reaching Medicaresavings targets in the coming year. The majorityleaders in the House and Senate must introduce billsincorporating the board’s proposal the day theyreceive it.

• Congress cannot “consider any bill, resolution,amendment, or conference report . . . that wouldrepeal or otherwise change the recommendations ofthe board” if such changes fail to meet the board’sbudgetary target.

• By April 1, the committees of jurisdiction mustcomplete their consideration of the proposal. Anycommittee that fails to meet the deadline is barredfrom further considering the bill.

• The secretary of health and human services mustimplement the Independent Payment AdvisoryBoard’s proposal, as passed by Congress and signedby the president, on August 15 of the year in whichthe proposal is submitted.

• If Congress does not pass the proposal or asubstitute plan meeting the Independent PaymentAdvisory Board’s financial target before August/15,or if the president vetoes the proposal passed byCongress, the original Independent PaymentAdvisory Board recommendations automaticallytake effect.Further demonstrating the Star Chamber-like powersof the Independent Payment Advisory Board,Congress cannot consider any bill or amendmentthat would repeal or change this fast-trackcongressional consideration process without a three-fifths vote (60) in the Senate. Not only that, but theimplementation of the board’s remedy is exemptedfrom administrative or judicial review.

IPAB defenders claim that the IPAB’s iron fist isnecessary to ensure cost containment. They alsonote that the board does not have a completely freehand. For example, as it pursues its mission offrugality, it is not currently allowed to recommendhealth care rationing, changes in Medicare benefits,or revision of eligibility standards.

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That is hardly reassuring. Before IPAB is even upand running, powerful voices began calling for IPABto be granted expanded powers—including explicitNICE-style powers of health care rationing. Thus,Christina D. Romer, former chairwoman ofPresident Barack Obama’s Council of EconomicAdvisers, wrote in the New York Times: “Once thepayment advisory board has a track record . . . itcould be empowered to suggest changes inbenefits or in how Medicare services are provided—say, along the lines of successful demonstrationprojects.”

Even more explicitly, former Obama TreasuryDepartment adviser and New York Times columnistSteven Rattner wrote, “We need death panels,”urging that IPAB be transformed into a rationingboard. “No one wants to lose an aging parent,” hewrote. But the cost of caring extensively for theelderly “imposes an enormous societal cost that fewother nations have been willing to bear,” and so wetoo must jump into the rationing pool:

Take Britain, which provides universal coveragewith spending at proportionately almost half ofAmerican levels. Its National Institute for Healthand 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’sability to extend life. At the least, theIndependent Payment Advisory Board shouldbe allowed to offer changes in services andcosts. We may shrink from such stomach-wrenching choices, but they are inescapable.

Similarly, the New England Journal of Medicine(NEJM)—an explicit supporter of NICE-style healthcare rationing—has opined that “strengthening ofIPAB is of critical importance.” Moreover, theNEJM has supported a system of rationing utilizedby NICE based on the discriminatory quality of lifeyear (QALY), which judges healthier, younger, andmore able-bodied lives as having greater value thanthose on life’s edges. For example, an editorialfavoring using QALYs in the context of the ACAargued:As the country searches for ways to curb health carespending, consideration of the cost-effectiveness ofhealth interventions will unavoidably be part of thehealth care debate, alongside considerations ofpossible payment- and delivery-system reforms. The

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use of explicit, standard metrics such as cost-per-QALY ratios has the advantage of transparency andcan help direct our resources toward the greatesthealth gains.

Such thinking demonstrates how centralizedhealthcare management practices unleash broadtechnocratic impulses. Rather than reinforcingstandards of professional excellence in medicine,health care instead comes to be dominated by thebureaucratic imperatives, in turn leading to connect-the-dots medicine.

Indeed, because the Liverpool Care Pathway oftenhas been perceived through a distortingbureaucratic prism, it has become a pronouncedthreat to the most weak and vulnerable patientsprecisely when they are at their most weak andvulnerable. We ignore that lesson in the UnitedStates at our own peril.

NOTES1. For more information on the National Institute onHealth and Clinical Excellence, seehttp://www.liv.ac.uk/media/livacuk/mcpcil/migrated-files/liverpool-care-pathway/updatedlcppdfs/What_is_the_LCP_-_Healthcare_Professionals_-_April_2010.pdf2. Michael P. Hahn, “Review of Palliative Sedationand Its Distinction From Euthanasia and LethalInjection,” Journal of Pain & Palliative CarePharmacotherapy. 2012; 26:30-39.3. Id., p. 31.4. Id.5. Id., pp. 36-37.6. Timothy W. Kirk, PhD, and Margaret M.Mahon, PhD, RN, FAAN, for the PalliativeSedation Task Force of the National Hospice andPalliative Care Organization Ethics Committee,“National Hospice and Palliative Care Organization(NHPCO) Position Statement and Commentary onthe Use of Palliative Sedation in Imminently DyingTerminally Ill Patients,” Journal of Pain andSymptom Management Vol. 39 No. 5 May 2010,914-923.http://www.nhpco.org/files/public/JPSM/NHPCO_Pall-Sedation-Ther_JPSM_May2010.pdf7. Marie Curie Palliative Care Institute, “What isthe Liverpool Pathway for the Dying Patient?:Information for Health Care Professionals,” April2010, p. 2.

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http://www.liv.ac.uk/media/livacuk/mcpcil/migrated-files/liverpool-care-pathway/updatedlcppdfs/What_is_the_LCP_-_Healthcare_Professionals_-_April_2010.pdf8. Id., p. 4.9. Id., p. 5.10. Id., p. 8.11. P.H. Millard et al., “A Group of Experts WhoCare for the Terminally Ill Claim That SomePatients are Being Wrongly Judged as Close toDeath,” Telegraph, September 3, 2009.12. Kate Devlin, “Sentenced to Death on the NHS,”Telegraph, September 2, 2009.13. Bregje D Onwuteaka-Philipsen et al., “Trends inend-of-life practices before and after the enactmentof the euthanasia law in the Netherlands from 1990to 2010: a repeated cross-sectional survey,” TheLancet, July 11, 2012http://press.thelancet.com/netherlands_euthanasia.pdf14. Chris Irvine and Kate Devlin, “Daughter ClaimsFather Wrongly Placed on Controversial NHS Endof Life Scheme,” Telegraph, September 8, 2009.15. Sarah-Kate Templeton, “Daughter SavesMother, 80, Left by Doctors to Starve,” The SundayTimes, October 11, 2009.http://www.thesundaytimes.co.uk/sto/style/living/Health/article187212.ece16. James Tozer, “My husband had beaten cancer,then doctors WRONGLY told him it had returnedand sent him to a hospice who let him die,” DailyMail, October 14, 2009.http://www.mailonsunday.co.uk/news/article-1219853/My-husband-beaten-cancer-doctors-wrongly-told-returned-let-die.html17. Laura Donnelly, “Half of Those on LiverpoolPathway Never Told,” Telegraph, December 1,2012,http://www.telegraph.co.uk/health/healthnews/9716418/Half-of-those-on-Liverpool-Care-Pathway-never-told.html18. John Bingham, “Hospitals Treating LiverpoolCare Pathway as Just Another ‘Thing to Do,’”Telegraph, January 8, 2013.http://www.telegraph.co.uk/health/elderhealth/9788737/Hospitals-treating-Liverpool-Care-Pathway-as-just-another-thing-to-do.html19. Jacqueline Laing, “A Lethal Power?” LegalWorld, November 23, 2012.20. Affordable Care Act of 2010, Section 3403,http://housedocs.house.gov/energycommerce/ppacacon.pdf21. Christina D. Romer, “Only the First Step in

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Containing Health Costs,” New York Times, July 21,2012.22. Steven Rattner, “Beyond Obamacare,” NewYork Times, September 16, 2012,http://www.nytimes.com/2012/09/17/opinion/health-care-reform-beyond-obamacare.html?mid=tw-share&_r=023. Henry J. Aaron, “The Independent PaymentAdvisory Board—Congress’s Good Deed,” NewEngland Journal of Medicine, 364:2377-2379, June23, 2011.http://www.nejm.org/doi/full/10.1056/NEJMp110514424. Peter J. Neumann et al., “Legislating Against theUse of Cost Effectiveness Information,” NewEngland Journal of Medicine, 363:1495-1497,October 14, 2010.http://www.nejm.org/doi/full/10.1056/NEJMp1007168?viewType=Print

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Wesley J. Smith is a senior fellow in human rightsand bioethics at the Discovery Institute. He alsoconsults for the Patients Rights Council and theCenter for Bioethics and Culture. His latest book isA Rat Is a Pig Is a Dog Is a Boy: The Human Costof the Animal Rights Movement (Encounter).

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