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12/16/2013

Top 10 North American Death Panels

by Thaddeus Pope, JD PhD

The term “death panel” is slippery.  It has been used either to describe or to disparage a rather motley group of initiatives and entities.  Here, I review the top ten North American “death panels.”  While common, applying the term “death panel” in the first two instances is inaccurate and misleading.  Indeed, most popular usage of the term “death panels” remains mere calumny.  But, sometimes, the “death panel” nomenclature is actually befitting.  In the remaining eight cases, the term “death panel” fits reasonably well.

1.  Medicare Voluntary Advance Care Planning

The term “death panel” was famously misapplied to statutory and regulatory attempts to expand Medicare provider payments for voluntary advance care planning discussions.  This usage was quickly and appropriately denounced, for example, as PolitiFact‘s “Lie of the Year.”

Sure, most people who reflect and deliberate about their wishes in situations of severe and terminal illness would not choose to prolong their biological lives with organ replacement technologies.  But expanded Medicare coverage was only intended and designed to elicit and document those treatment preferences and values that people already have.  POLST, for example, is a tool that successfully ensures the treatment people want is the treatment people get.  There was never any plan to influence (much less coerce) treatment decisions in any particular direction.

2.  Independent Payment Advisory Board (IPAB)

The IPAB is a fifteen-member federal agency created by section 3404 of the Affordable Care Act.  It is charged with achieving specified savings in the $500 billion Medicare program.   While President Obama has not yet nominated any Board members, the IPAB is supposed to free Congress from technical program details like setting physician payment rates.  Because it is charged with controlling spending in the country’s largest health insurance plan, it is not surprising that the IPAB has been repeatedly charged (e.g. here and here) as a “death panel.”  But the charge is false.

Yes, the IPAB looks like the United Kingdom’s National Institute for Health and Clinical Excellence (NICE) which makes healthcare coverage decisions that effectively impact who will live and who will die.  But unlike NICE, the IPAB is statutorily barred from denying life-saving treatment on cost-effectiveness grounds.  The authorizing statute provides that the IPAB “shall not include any recommendation to ration health care, raise revenues or Medicare beneficiary premiums…, increase Medicare beneficiary cost sharing (including deductibles, coinsurance, and copayments), or otherwise restrict benefits or modify eligibility criteria.”

3.  Texas Advance Directives Act (TADA)

Federal laws like the ACA garner public and media attention.  But most regulation of healthcare still happens at the state level.  For example, section 166.046 of the 1999 Texas Advance Directives Act empowers clinicians to refuse life-sustaining treatment requested by a surrogate on an incapacitated patient’s behalf.  There are no substantive criteria to satisfy.  Clinicians must simply determine that the disputed treatment, though effective, is “inappropriate.”

The treating facility must give the surrogate:  (a) 48-hours’ notice of the ethics committee meeting, (b) a copy of the ethics committee’s decision, and (c) ten days to try to transfer the patient to another facility willing to provide the disputed treatment.  So long as these conditions are satisfied, under section 166.045, providers have civil, criminal, and disciplinary immunity.  And no court can review the merits of the ethics committee’s decision.  In short, a Texas hospital’s own ethics committee is the forum of last resort for many life and death decisions.

4.  Other Healthcare Ethics Committees

Ethics committees outside Texas do not usually have the same explicit power to authorize the withholding or withdrawal of requested life-sustaining treatment.  Still, many of these healthcare ethics committees have been given increasing power and authority to authorize the stopping of desired life-sustaining medical treatment.

5.  Ontario Consent and Capacity Board (CCB)

In October 2013, the Supreme Court of Canada strongly endorsed the Ontario Consent and Capacity Board as a conflict resolution mechanism in disputes over life-sustaining treatment.   The CCB is a body created by the Ontario government under its Health Care Consent Act.  When in-house conflict resolution fails, CCB can mediate.  If mediation fails, CCB adjudicates.  The CCB is, in short, “an independent, quasi-judicial tribunal;” a “neutral, expert board” which, in intractable treatment disputes, can make a “legal, binding decision that can only be reversed on appeal through the courts.”

Of particular note is that the CCB is specially designed to ensure that healthcare surrogates comply with the principles of substitute decision-making.  The CCB makes its own determination.  If the CCB finds that the surrogate has not complied, then it directs the surrogate to consent to treatment as the CCB finds appropriate.  If the surrogate fails to do so, then the CCB passes the right to act as surrogate to the next eligible person.  Regularly, when providers recommend treatment that includes the withholding or withdrawal of life-sustaining medical treatment, the CCB directs reluctant surrogates to consent.

6.  Admissions and Policy Committee of the Seattle Artificial Kidney Center

Last year, I wrote a short piece called “50th Anniversary of the Death Panel” to commemorate one of the most infamous death panels in U.S. history.  In 1962, Seattle, Washington’s Swedish Hospital housed the only dialysis clinic in the country.  But, even locally, there were more needy patients than Swedish could accommodate.  The Seattle Committee’s job, as a famous Life Magazine article title described it, was to “decide who lives, who dies.”  Consequently, it became known as the “God Committee” or “God Squad.”

Over the following decade, other committees in other cities similarly decided who would, and who would not, get access to life-saving dialysis.  These dialysis committees disappeared after Congress expanded access in 1972, by authorizing the End Stage Renal Disease Program under Medicare.  There was no longer a shortage of machines and facilities.  Unfortunately, such a “fling open the gates” approach to eliminating the need for a death panel cannot be replicated in 2014.

7.  United Network for Organ Sharing (UNOS)

There are over 77,000 active waiting list candidates for organ transplants.  And there is nowhere near a sufficient supply of donors or organs to meet this need.  Right now, kidneys are given out mostly on a kind of first-come, first-served basis:  those who have been waiting the longest tend to get first priority whenever a kidney becomes available.  But that can means that we are not maximizing the life benefit from the existing kidney transplants.  Many kidneys from young, healthy people can end up in elderly, frail people.  So, we are transplanting kidneys that may last 40 years, into individuals expected to live only five more years.  We are not maximizing benefit.

Among other changes, UNOS has proposed recalibrating the current balance between efficiency and fairness, to direct more kidneys expected to last the longest into recipients expected to get the most years out of the organ.  Furthermore, apart from UNOS policy, some denials are made not only by the waiting list prioritization process but also by individual transplant centers.

In situations of strict scarcity like human organs, life-and-death decisions must be made.  In establishing standards and scoring rules for organ allocation, UNOS is determining who will and who will not get a life-saving transplant.  For some, it is acting as a life panel.  For others, it is acting as a death panel.

8.  Oregon Health Plan (Oregon Medicaid)

Oregon has long been famous for ranking the services provided by its Medicaid program in terms of QALY per dollar cost-effectiveness.  On average, those interventions and procedures that cost more, yet provide little benefit, are not covered.  Other state Medicaid programs also limit coverage of high-cost, low-benefit procedures, even when they are potentially life-saving.  Oregon just does it more explicitly.

Oregon’s coverage of cancer treatment has been getting a lot of attention lately.  Early versions of Oregon’s Prioritized List did not allow payment for any cancer treatment for patients who had less than a 5% five-year expected survival due to their cancer.  In 2009, Guideline Note 12 was adopted to allow payment for more treatment of more cancers for more patients.  It outlined restrictions excluding coverage of treatment with intent to prolong survival for patients with any of the following:

  • Median survival of less than 6 months with or without treatment, as supported by the best available published evidence
  • Median survival with treatment of 6-12 months when the treatment is expected to improve median survival by less than 50%, as supported by the best available published evidence
  • Median survival with treatment of more than 12 months when the treatment is expected to improve median survival by less than 30%, as supported by the best available published evidence
  • Poor prognosis with treatment, due to limited physical reserve or the ability to withstand treatment regimen, as indicated by low performance status

This year, the Health Evidence Review Commission revised its cancer treatment guidelines yet again.  In August 2013, the HERC voted to exclude “treatment with intent to prolong survival . . . for patients who have progressive metastatic cancer with [either] (1) severe co-morbidities unrelated to the cancer that result in significant impairment in two or more major organ systems which would affect efficacy and/or toxicity of therapy; OR (2) a continued decline in spite of best available therapy with a non-reversible Karnofsky Performance Status or Palliative Performance score of <50% with ECOG performance status of 3 or higher which are not due to a pre-existing disability.”  The changes were effective October 1, 2013.

9.  Private Health Insurance Coverage Denials

I hardly need to mention that private insurance companies deny payment for life-saving treatment all the time.  Indeed, it is their job to ensure that requested treatments are covered under the terms of the applicable insurance contract.  Without such responsible stewardship, the entire system of health insurance would crumble and fall.  Still, denial decisions are often wildly unpopular.  Utilization review workers have infamously denied coverage for organ transplants, life-saving drugs, and other critically needed therapies.  And, yes, as Wendell Potter and others have shown, these coverage denials are not always made in good faith.

10.  Aid in Dying Tribunals

Aid-in-dying is now legal in Hawaii, Montana, Oregon, Vermont, and Washington.  It may soon be legal in New Mexico.  But the main obstacle to expanding the option to other jurisdictions has been concern about the robustness of the safeguards.

Last month, at the Global Conference on Suicide, Self-Harm and Assisted Dying, law professor Claudia Carr proposed a new tribunal style system to provide sympathetic and speedy consideration for each and every terminally-ill patient who wishes to actively hasten their death.  The introduction of a specialized tribunal panel, comprising representatives from both the judiciary and the medical profession, can assess each case on its merits.  Professor Carr’s proposed system would seek to confirm whether the patient has a terminal condition.  The panel could also ensure that the patient is not being unduly pressured.

These safeguards are currently being implemented by the patient’s treating clinicians.  While there is no evidence that this is inadequate, an independent tribunal like that proposed by Carr could help assure those concerned about the risk of abuse.  These tribunals may be the next U.S. death panel.  This one, however, would work in precisely the opposite fashion of most.  After all, death is precisely what the patient is asking for.

Conclusion

Many policymakers and commentators decry use of the term “death panel.”  In contrast, I welcome broader and more frequent use of the term.  Tragic choices must be made.  And all sorts of tribunals are making life-and-death decisions not just every day, but even every hour of every day.  Americans are being denied access to interventions that might prolong their lives.  It is true.  It is unavoidable.  Recognizing the regularity and necessity for death panels will make discussions over when and how to use them more productive.

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