The Right to Terminal Sedationinfo@CompassionAndChoicesNJ.org
The Right to Terminal Sedation
The objectives of this essay are four-fold. First, to demonstrate that terminal sedation and dehydration is a well established legal right throughout America. Second, to show that at the practical level it is rarely available. Third, to argue that to the extent the U.S. Supreme Court decisions rejecting physician aid-in-dying (PAD) as Constitutionally protected were based on the assumed fact that terminal sedation and dehydration was available throughout America, so that there was no need for PAD, those decisions are deeply flawed and should be corrected.
Finally, the essay argues that support for terminal sedation in nowise undercuts the need for PAD at the practical level, nor does the legal right to terminal sedation obviate the legal right to PAD.
The Right to Terminal Sedation and Its Widespread Denial
It is widely reported that today few M.D.s, few hospitals, few nursing homes and few hospice organizations offer the dying in intractable suffering the alternative of terminal sedation and dehydration. Terminal sedation is the administration of barbiturates (often with opioids) deliberately to produce and continue unconsciousness. Almost invariably it is accompanied by the cessation of hydration and nutrition. A predictable result is in due course the suppression of breathing and death.
PAD is the furnishing by a physician of a prescription for a lethal dose of drugs to a terminally ill patient in intractable suffering, which the patient may or may not get filled by a pharmacist and thereafter see fit to self-administer to end suffering by hastening dying.
Reporting on widespread denial of terminal sedation (and other palliative care) is Zerzan, Stearns and Hanson, "Access to Palliative Care and Hospice in Nursing Homes," JAMA, Nov. 15, 2000, 284:19, p. 2489 and Aberg, "Terminal Sedation and Refusal of Hydration as Ways of Hastening Death: Another View," TimeLines, Winter 2001, p. 10. The latter’s author, a hospice nurse for seven years, reported that he had only seen four instances of terminal sedation in his entire career.
Again, evidence of widespread attitudes in the medical community at the practical level barring access to terminal sedation and dehydration is in Meisel, Snyder and Quill, "Seven Barriers to End-of-Life Care—Myths, Realities, and Grains of Truth," JAMA, Nov. 15, 2000, 284:19, p. 2495. "Myth 2" reads: "Withholding or Withdrawing of Artificial Fluids and Nutrition from Terminally Ill or Permanently Unconscious Patients Is Illegal." Although this myth is widely believed, it is false, as demonstrated by many state court cases and the Cruzan case in the U.S. Supreme Court (497 U.S. 261 (1990)). The practical reality to the suffering patient, however, is that unless she has someone to advocate strongly for her against this entrenched myth, she will be denied the terminal sedation and dehydration to which state courts and the U.S. Supreme Court have declared she is entitled.
Several of the other "Myths" exposed in this article are also in point. For instance, "Myth 3: Risk Management Personnel Must Be Consulted Before Life-Sustaining Medical Treatment May Be Terminated." And, "Myth 5: If a Physician Prescribes or Administers High Doses of Medication to Relieve Pain or Other Discomfort in a Terminally Ill Patient and This Results in Death, the Physician Will Be Criminally Prosecuted."
Very much in point is "Myth 6: When a Terminally Ill Patient’s Suffering Is Overwhelming Despite Excellent Palliative Care and the Patient Is Requesting a Hastened Death, There Are No Legally Permissible Options to Ease Suffering." Nonsense, in effect rejoin the authors: in such a case terminal sedation with the withholding of fluids and nutrition is both ethical and legal throughout America.
Recall that the American Nursing Association position statement on "The Promotion of Comfort and Relief of Pain in Dying Patients" (1991) declares: "Nurses should not hesitate to use full and effective doses of pain medication for the proper management of pain in the dying patient. The increasing titration of medication to achieve adequate symptom relief, even at the expense of life, thus hastening death secondarily, is ethically justified." (Emphasis added.)
And as part of its 1999 materials for the American Medical Association’s EPEC Project to educate physicians in end-of-life palliative care, the position of the AMA’s Council on Ethical and Judicial Affairs on "Providing Palliative Care that Might Hasten Death" was reproduced, providing in part: "The administration of a medication necessary to ease the pain of a patient who is life-threateningly ill and suffering excruciating pain may be appropriate medical treatment even though the effect of the medication may shorten life."
The Double Effect Rationale
The conventional ethical doctrine "excusing" causing death in such situations is the rationale of the double effect. Originally this was an invention of Catholic theologians in the Middle Ages to justify the inescapable killing of innocent persons as a collateral effect to a "just war". A state could ethically engage in a "just war" (for example, one of defense) in which numerous of its own innocent civilians and those of the aggressor were slain because those deaths were not "intended". The primary intent was the defense of the state: a tragic supposedly unintended effect of the "just war" defense was the death of the innocents.
This rationale of the double effect was thereafter imported into other ethical dilemmas. It is commonly invoked to justify terminal sedation and dehydration when death results. For example, see Krakauer, Penson, Trugg, King, Chabner and Lynch, "Sedation for Intractable Distress of a Dying Patient: Acute Palliative Care and the Principle of the Double Effect," The Oncologist 2000; 5:53-62.
Of course, the doctrine of the double effect is highly naïve and has been trenchantly criticized, most tellingly perhaps in Quill, Dresser and Brock, "The role of the double effect—a critique of its role in end-of-life decision making," N. Eng. J. Med. 1997; 337: 1768-71. The basic problem arises from the position that death is supposedly not "intended". It may in some sense not be "wished for", but it is fully "intended". For it is settled that at law and ethics if a certain consequence is clearly foreseeable a person producing that consequence will be held to "intend" it, however vehemently he may claim otherwise. (Indeed, at law it matters not that the acting person actually foresee the consequence: if it is clearly foreseeable, he is deemed to have "intended" the consequence in fact produced.)
Good and caring physicians where adequate palliation cannot otherwise be achieved in a manner acceptable to the patient thus knowingly and intentionally kill their dying patients with terminal sedation and dehydration, which is properly characterized as "palliative care of last resort". Yes, physicians (very rarely, thank goodness) must cause homicides. But these are excusable homicides, just as are homicides effected in self defense, in battle during war or by granting a mortally wounded intractably suffering comrade the grace of a "coup de grace". We do not need the bankrupt doctrine of the double effect: this is simply the right thing to do in a total situational ethics context: it most fully affirms the worth of the dying patient and respects that patient’s autonomy.
Does This Undercut the Supreme Court’s Decisions on PAD?
The widespread denial at the practical level of terminal sedation and dehydration is strange, because Supreme Court Associate Justice Sandra Day O’Connor in her concurrence in the Glucksberg and Quill cases of June 1977 that held PAD not a Constitutionally protected "liberty interest" explicitly based her concurrence on what she stated was the factual-legal conclusion of all the parties and amici that terminal sedation and dehydration was available throughout the United States to otherwise suffering dying persons even if this resulted in hastened dying. (And the fair tenor of her opinion was that she approved making terminal sedation and dehydration thus available to lessen needless pain and suffering.)
In sum, Justice O’Connor held that with terminal sedation and dehydration thus legally available there simply was no need for PAD. But if the suffering dying are in fact routinely denied this relief (to which all conceded they were entitled at law), this seemingly negates the key condition on which she based her position that PAD is not necessary and thus not Constitutionally protected.
A Michigan attorney has brought an action in Federal District Court asking declaratory relief that the plaintiffs he represents be declared Constitutionally entitled to terminal sedation and dehydration as a "liberty interest". But even if this right be held not of U.S. Constitutional stature, it is one available at state law and under state constitutions.
Terminal sedation and dehydration has been referred to by some commentators as "slow euthanasia". In the wake of the Glucksberg and Quill cases previously noted, Prof. Orentlicher opined that, while the Supreme Court had held PAD not Constitutionally protected, it had in those decisions elevated terminal sedation and dehydration to very nearly Constitutionally protected status. See, Orentlicher, "The Supreme Court and physician-assisted suicide: rejecting assisted suicide but embracing euthanasia," N. Eng. J. Med., 1997:337, 1236-39. Of course, this leads to an almost ridiculous (if it weren’t so tragic in many cases) situation: we may legally slowly kill, but not do so quickly and humanely.
But if the fact of the widespread unavailability of terminal sedation at the practical level throughout America were presented anew to the High Court, might not the five justices who left the door ajar to reconsideration of PAD as Constitutionally protected possibly seize on that opportunity to correct the imperfect jurisprudence of Glucksberg and Quill?
After all, when the school desegregation cases, the voting rights cases and the cases attacking "Jim Crow" laws throughout the South were presented to the Court now near half a century ago, it did not retreat behind the formalism of ideal Constitutionally protected laws floating in some "Platonic universe", as it were. Rather, the Court looked to see what were the remedies available at the practical level to the aggrieved plaintiffs. Finding there were no practical remedies available the Court launched the changes that have more nearly brought our African American citizens full enjoyment of their rights.
By a parity of reasoning, with the intractably suffering terminally ill today at the practical level so pervasively deprived of their right to terminal sedation and dehydration, the Court should now offer them the relief so many demand: PAD as an option, under guidelines protective against abuse.
Will Insisting on Terminal Sedation Undercut the Need for PAD?
It might seem sensible that if we insist on and eventually obtain widespread practical availability of terminal sedation with dehydration that would diminish the need for PAD. In such a context one should concede there will be some diminution of the need for PAD: to the extent some dying patients choose terminal sedation, plainly they will not need to resort to PAD. To that extent there is some superficial validity to Justice O’Connor’s approach.
That does not mean we in the Hemlock Movement should discourage or disparage resort by the dying to terminal sedation. We have always prided ourselves on supporting freedom for the dying. Terminal sedation is a fully legitimate end-of-life alternative. We ought not to "hold hostage" to an eventual ideal PAD those who want terminal sedation now. (Any more than we allow those championing a higher level of palliative care throughout all of medicine to "hold hostage" PAD until that overall higher level first be achieved.) We must be true to our core principle of freedom for the dying: that their individual choices be respected.
The practical and legal flaw in Justice O’Connor’s approach is that it is disrespectful of the individual choices of the dying. This is contrary to the core of the Declaration of Independence: that each of us is entitled to "the pursuit of happiness" as we individually determine it—a principle in effect imported into the 14th Amendment’s largely parallel language. The Supreme Court thus has no right to require all of the intractably suffering dying who want to hasten their dying to choose one particular way—terminal sedation with dehydration. Many consider such a mode of dying more abhorrent than death itself.
Again, what this approach overlooks is that it is well settled that the dying who wish to expire with a measure of clarity have the Constitutional right so to do. At common law a criminal condemned to death could not be executed if he thereafter became insane. The rationale for this rule was two-fold: the person facing execution must understand his execution as a sort of civil sacrament, infused with majesty (rather than being simply butchered like an unthinking brute), and the condemned is entitled to clarity at his end, whether to "meet his Maker face to face" or otherwise. This rule was declared a Constitutional right in Ford v. Wainright, 477 U.S. 399 (1986), in which the Court observed that a similar position was embraced by all of the states.
Justice O’Connor’s approach forces the intractably suffering dying to accept a mode of dying—while sedated to unconsciousness—which the Court has declared no state may force on those criminals it executes via lethal injection or otherwise. Those being executed have a right to commence the dying process while fully alert, not sedated to unconsciousness. Should non-criminals be deemed to have lesser rights? It is thus evident that such a mode of dying as the only allowed means to escape senseless intractable suffering may not lawfully be forced on the dying.
While the right to terminal sedation with dehydration is widely recognized as a basic right of the terminally ill in intractable suffering, there is much evidence that at the practical level this right is almost invariably denied.
The supposed availability of terminal sedation was the corner-stone on which Justice O’Connor erected her concurring opinion holding PAD not necessary and thus not a Constitutionally protected "liberty interest". With terminal sedation in fact rarely available at the practical level—the only level that counts in the real world—this undercuts Justice O’Connor’s opinion and the Supreme Court’s decisions on PAD.
In any event, the availability of terminal sedation is legally irrelevant to whether PAD is needed. No dying person should be forced to adopt one particular means to end suffering. We should thus support freedom for the dying: their free choices as to how to die.
Especially is this so when there is a settled Constitutional right for those wishing to start the dying process with a measure of clarity so to do, so that no dying person should be restricted to terminal sedation as the sole "palliative care of last resort" unless such person genuinely wants to embrace that route and start the immediate dying process while drugged to unconsciousness.
This essay was written by Winthrop Thies, former President of The Hemlock Society of New Jersey (the predecessor organization to Compassion and Choices of New Jersey, Inc.).