Fig. 24.1
Descending ladder of physician action in end-of-life care
Before addressing the different categories of physician action using medical ethics or personal conscience, it is first advisable to understand what the law says about DE.
Double Effect and the Law
The fear that DE opens the door to legalized euthanasia is a prime motivator behind the precepts that get codified into law. The principle has in the past come into conflict with laws forbidding acts or omissions that hasten death. Australian law, for example, clarifies that acting to kill or allowing a person to kill oneself is unacceptable. Palliative care must be “reasonable” and “in good faith” and is never to be confused with euthanasia [9].
In the United States, recent federal focus has been on forbidding clinicians to help people die. The Pain Relief Promotion Act (PRPA) (H.R.2260), which would have imposed stiff penalties on clinicians for assisting the suicide of a patient, was passed by the House of Representatives in 2000 only to stall in committee, never becoming law. The proposal was alternately praised and damned by physicians. The American Medical Association (AMA) hailed the act for acknowledging that death may be hastened by appropriate, aggressive palliative care. But critics decried the attempt to override state law, putting federal authorities in charge of medical determinations such as how high a dose indicates “intent” to assist suicide rather than to relieve pain [10].
The failure of the PRPA was followed by a challenge from the US Attorney General to Oregon’s physician-assisted suicide law attempting to outlaw the prescribing of medications to assist with a suicide on the grounds that to do so does not serve “a legitimate medical purpose” under the federal Controlled Substances Act. In the end, the US Supreme Court refuted the challenge, specifying that Congress has not granted medical decision-making power to the attorney general, though it is possible such power could still be granted in the future [11, 12].
The Supreme Court has affirmed that patients have a right to palliative care and also upholds states’ rights to pass their own laws regarding physician-assisted suicide; a majority of states have passed laws forbidding the assisting of suicide [13, 14].
US criminal law forbids causing death but protects posing a risk to life if the risk is justified by expected benefits. US law also says a physician is to stop treatment when a competent patient requests, even with the foreknowledge of death. When palliative care does not bring adequate relief, “there is a growing consensus [in the United States] that sedation to the point of comfortable sleep is permissible” [15]. Thus, the law and common medical practice stand against DE, which says the cause of death cannot be intentional.In general, US law recognizes the right to discontinue life-sustaining therapy but stops short of endowing a patient with the right to die. Some supporters of a patient’s right to die find the distinction counterintuitive, asking why the refusal of life-supporting therapy is protected, but the choice to ask a physician for assistance in ending one’s life is not [16].
The argument for the patient’s right to die is offset by the belief that laws allowing assisted suicide are based on a “cynical argument … that killing pain and deliberately killing patients are essentially similar, that neither laws nor doctors can effectively distinguish them, that therefore we must allow both if we allow either” [17]. So the argument continues unabated.
Is the DE Argument Based on a “Myth?”
Opioids confer enormous benefits for the dying, including the relief of pain and dyspnea. Their side effects include:
Sedation
Respiratory depression
Hypotension
Vomiting
Myoclonus
Delirium
Anxiety
Agitation
Do they also hasten death? Some experts in pain and palliative care say no and would render moot DE’s relevance to questions of high-dose opioids administered to the dying. Several researchers argue that little evidence supports the precipitation of death so often associated with the giving of opioids at the end of life [18, 19]. Fohr performed an exhaustive literature review, concluding that the belief that opioids hasten death via respiratory depression is “more myth than fact” and further posits that a false belief in DE leads to the undertreatment of pain because physicians fear to hasten death [19]. The American Academy of Pain Medicine (AAPM) and the American Pain Society (APS) uphold the principle that patients on opioid therapy develop tolerance quickly to the risk of respiratory depression and that pain itself antagonizes the effect, further reducing the risk [20].
It is argued that opioids given to dying patients may appear to hasten a death that is instead the result of the disease process and also that benzodiazepines and barbiturates are more likely to induce a sedation that could lead to death than are opioids. However, other literature supports the potential of opioids for hastening death – particularly in patients with sleep apnea – [21–23] and warns against counting on tolerance to confer complete protection to respiratory depression. Research has found that development of tolerance to respiratory depression is highly variable and may lag behind tolerance to other effects, never becoming complete even for long-term opioid users [24, 25].
Categories of Clinician Action
Clinical actions in the treatment of terminal patients throw into sharp relief society’s views on patient autonomy and clinician intent. Many commentators take pains to differentiate the DE-supported use of opioids that may hasten death from the practice of euthanasia. Though some argue for euthanasia or physician-assisted suicide as humane practices, the prohibitions of law and of many individual consciences would disagree. Therefore, the largest gray areas in DE application exist in the categories of terminal sedation and the cessation of life-sustaining therapy, both of which do occur commonly in medical practice.
“Foreseen” and “intended” consequences can be in the eye of the beholder, depending on whether one believes the action achieved is good in proportion to the bad. Research does support the assertion that clinicians, particularly nonspecialists, fear to hasten death [26]. The danger exists that, hamstrung by ambiguities, clinicians may refuse to give adequate pain control.
Euthanasia
Euthanasia is the intentional administering of medication or other interventions to cause a patient’s death. This can be either voluntary at the request of a competent patient who has received informed consent or involuntary, lacking the request of a competent patient. In DE terms, the intention (to relieve pain) may be laudable, but the primary action (voluntary killing) is impermissible.
The following experience, the memory of a then 26-year-old intern illustrates the daily experiences of clinicians who work with dying patients:
I will never forget this patient because the experience was terribly painful. He was over 90 and in the VA hospital waiting to die. He did not have a terminal illness – he was just old. He could walk only with tremendous pain. He could perform no other meaningful activities. He was half blind, had partial hearing, couldn’t sleep, and was tormented with bowel and bladder problems. He hurt all over, and he had no family. This man did not want to live. Every time I passed his bed, he would grab at me, cry and plead for me to help him die. He suffered physically and emotionally as much as anyone can suffer. His only hope was to escape. I was obliged to observe him being tortured by his own existence. I had nightmares of hearing him scream. Obviously I couldn’t comply with his request. My own personal conscience tells me I couldn’t have done it then, and I couldn’t do it now. But that doesn’t mean I don’t believe someone could.
The intern who chronicled that memory is the first author of this chapter, now many years removed. The question at stake is whether the preservation of life is always the ultimate value. DE forbids causing a grave harm as an end in itself, but could the law of proportionality sometimes support the belief that allowing a person to suffer excruciating pain with no hope of relief is itself an unjustifiable harm?
Those who argue that active euthanasia – not just acts of omission and “letting die” – can be a compassionate, clinical act are buoyed by the belief that consequences, such as a pain-free death, matter as much or more than absolute prohibitions against deliberate killing [27].
The absolutist would disagree sharply, lobbying for limitations on patient autonomy and the need to scrutinize the clinician’s intent as opposed to the clinical outcome. One worry is that a clinician, endowed with too much decision-making power, could succumb to skewed intentions and – overfocused on ending pain – begin euthanizing without consent. Some experts argue it is relatively easy to prove intent by reviewing the medical record of drugs given and actions taken; but this supposition depends mightily on the qualifications of the person doing the looking.
Physician-Assisted Suicide
Physician-assisted suicide refers to the providing of medications or other interventions to a patient who intends to use them to end his or her life [7]. In general, it is assumed that the physician knows what the patient intends. The value assigned to patient autonomy is thus brought directly into conflict with the DE prohibition against intending a patient’s death.
Distinctions of intention may be unclear: How, for example, can a physician know for certain what a patient will do with medications sufficient to either relieve pain or to cause death (if taken in high enough quantities)? Is it sufficient to violate DE if a physician knows a death will result from his action, even if it is the patient’s own final action that brings the death about?
In addition to the prohibitions enforced by law, a fair number of medical professionals and associations oppose physician-assisted suicide, believing it reflects a failure to provide adequate palliative care and psychological support to the dying. The American Medical Association (AMA) has announced its firm opposition to physician-assisted suicide as a contradiction of the physician’s role as healer. The familiar arguments that pit the right to a pain-free death and patient autonomy against the need to safeguard life and guard against a “slippery slope” of suspect clinician intent also apply here.
Terminal Sedation
Terminal sedation refers to the administration of a dose larger than is needed for analgesia with the goal of sedating the patient to the point of unconsciousness to relieve untreatable pain. This action often occurs in tandem with the cessation of life-sustaining therapies. The intentionality of causing death is incompatible with DE, although many physicians perform this action, which is supported by current medical ethical standards and allowed by law. The practice is not meant to provide mere clinical expediency and should be driven only by the patient’s symptoms. It requires informed consent from the patient or the permission of a surrogate. Critics complain that terminal sedation is comparable to slow euthanasia and could be easily abused by clinicians.
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