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Re:Re:In Response to Pallitave Care
Submit responseIn reply to responses to their article, Quill et al assert that in some cases of intractable suffering sedation directly to unconsciousness may be necessary, and that proportional sedation may be insufficient. It seems that some of the contention here arises from ambiguity in the term "proportionality". In a clincal sense proportional sedation suggests a step-wise, temporal titration of sedation, while in an ethical sense proportional sedation suggests that the level of sedation should match the symptom. My worry is that by introducing a conception of palliative sedation which includes "palliative sedation to unconsciousness" the ethical sense of proportionality may be undermined. Clinically sedation directly to unconsciousness may be required, but ethically this remains a version of proportional palliative sedation.
Conflict of Interest:
None declared
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Re:In Response to Pallitave Care
Submit responseWe generally agree with Cellarius that the central constructs justifying the differing levels of palliative sedation are proportionality and informed consent. For mild levels of distress, mild sedation is appropriate. For more severe distress, heavier sedation even to the level of unconsciousness may be needed. With proportionate palliative sedation (PPS), the level of sedation and the pace of increasing are in direct relationship with severity of otherwise unrelieved suffering (1). The level of sedation used will be the least amount that can relieve the distress. PPS may end with the patient being unresponsive, but that is not the intended endpoint.
We also agree with Sulmasy that the double effect can generally justify PPS (for clinicians who endorse the rule). Relief of suffering is the clinician's primary intent, and although there may be a foreseen risk of hastening death, it is not the clinician's intent (2, 3). However, we do not agree that PPS can only be justified by double effect reasoning, and would not ourselves justify in that way. Intent can distinguish palliative sedation to unconsciousness (PSU) from euthanasia, but we reject that intent marks the difference between the morally permissible and impermissible as double effect proponents claim. Death may or may not be intended by patient or clinician in PSU -in some circumstances intent may be exclusively to relieve suffering and to respect the patient's right to refuse nutrition and hydration, and for others intent may be more multilayered (4]). How intent applies to PSU is more controversial than to PPS, but this is less important in distinguishing between permissible and impermissible actions for us than for Sulmasy.
Proportionate palliative sedation is adequate to deal with most but not all intractable end-of-life suffering. We stand by our assertion that there will still be compelling cases where sedation directly to unconsciousness will be needed from the outset(1). Lesser levels of sedation would be insufficient. Consider these real examples:
A terrified patient with advanced oropharyngeal cancer who is bleeding out from a progressively rupturing carotid artery.
A patient with advanced pulmonary fibrosis, prepared to die rather than be re-intubated for a third time within a month provided we promise to aggressively manage his dyspnea, who is now extremely short of breath and agitated with a carbon dioxide level of 90.
A patient with amyotrophic lateral sclerosis (ALS) who wants to go off his mechanical ventilator but is extremely fearful of suffocation. For us, these cases are more difficult to justify using strict double effect reasoning because death can be both foreseen and to some extent intended by both patient and clinician (5). Stopping at lesser levels than total sedation made no sense to the patients, their families or the clinicians caring for them. And prolonging this process where suffering was so extreme by continuing other life-prolonging therapies would have been inappropriate. They each met the criteria of proportionality, had informed consent, and the clinician's primary intent was to relieve the patient's severe suffering, but to say that assisting these patients to die was completely unintended didn't seem genuine (4). Rather than relying exclusively on a rule from a particular religious tradition with sometimes unrealistic requirements about intention, it seems better to us to develop clear guidelines that include ways of responding to some of the most challenging cases (1).
References
1. Quill, T.E., Lo, B., Brock, D, Meisel A.., Last-resort options for palliative sedation. Annals of Internal Medicine, 2009. 151(6): p. 421-4.
2. Jansen, L.A., Sulmasy, D.P., Sedation, alimentation, hydration, and equivocation: Careful conversation about care at the end of life. Ann Intern Med, 2002. 136: p. 845-849.
3. Quill, T.E., Principle of double effect and end-of-life pain management: Additional myths and a limited role. Journal of Palliative Medicine, 1998. 2: p. 333-336.
4. Quill, T.E., The ambiguity of clinical intentions. N Engl J Med, 1993. 329: p. 1039-1040.
5. Quill, T.E., R. Dresser, and D.W. Brock, Rule of double effect: A critique of its role in end-of-life decision making. N Engl J Med, 1997. 337: p. 1768-1771.
Conflict of Interest:
None declared
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Options for Palliative Sedation
Submit responseWe agree with Quill T et al(1)that palliative sedation (PS) policies should be universal in palliative care services. However, we take issue with the case presented. Nausea is rarely a reason for PS and weakness and fear are almost universal and require ongoing attention in terminal care (2). The authors fail to report on what was done to mange these symptoms before considering PS.
The decision to utilize PS should be made by experienced clinicians in consultation with interdisciplinary team, and admission to an acute palliative care unit is frequently indicated. Requesting PS by patients could easily be confused with request for euthanasia (3). Notifying patients of the possibility of PS at an early stage may lead to inappropriate requests for this treatment. The distinction between different types of PS appears less important when it is delivered with the full intent of relieving distress and the clinician is willing to sedate to unconsciousness if required. Full relief of suffering in a situation of instituting a "treatment of last resort" has always been the intention of PS(4).
References:
1. Quill TE, Lo B, Brock DW, Meisel A. Last-resort options for palliative sedation. Ann Intern Med. 2009 Sep 15;151(6):421-4.
2. de Graeff A, Dean M. Palliative sedation therapy in the last weeks of life: a literature review and recommendations for standards. J Palliat Med. 2007 Feb;10(1):67-85. Review.
3. Sheldon T; Dutch Medical Association. Guideline seeks to clarify difference between palliative sedation and euthanasia. BMJ. 2009 Feb 3;338:b426. doi: 10.1136/bmj.b426.
4. Elsayem A, Curry Iii E, Boohene J, Munsell MF, Calderon B, Hung F, Bruera E. Use of palliative sedation for intractable symptoms in the palliative care unit of a comprehensive cancer center. Support Care Cancer. 2009 Jan;17(1):53-9.
Conflict of Interest:
None declared
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Clear Reasoning About Palliative Sedation and Double Effect
Submit responseWe are curious about the repeated invocation of double effect reasoning by Quill et al. regarding palliative sedation (1). Double effect reasoning crucially involves the distinction between what one foresees and what one intends, as well as the ability to make a proportionate judgment about the good and bad outcomes of an action (2,3). Inexplicably, two of the authors of the present paper have previously rejected double effect reasoning at the end of life in an article that they nonetheless explicitly cite in the present paper in support of the application of double effect to palliative sedation (4). They now write, “Occasionally, [Proportionate Palliative Sedation] requires sedation to unconsciousness, which is considered a foreseen but unintended side effect when lesser degrees of sedation were ineffective(1)." Yet, they previously rejected the distinction between the intended and the foreseen, stating, “… the analysis of intention used in the rule of double effect is problematic…. Even philosophers and theologians sympathetic to the distinction between intended and foreseen consequences have failed to find an unambiguous way to draw the distinction in many difficult cases(4)."
In the present article they use double effect reasoning to argue that what they have called “palliative sedation to unconsciousness” (PSU) can be distinguished from euthanasia. They state, “Although the purpose of PSU is to relieve otherwise intractable suffering, the patient is always rendered unconscious as an end point and therefore cannot take food and fluids by mouth, which may have the unintended effect of hastening a patient’s death(1)." Yet their reference for this sentence is the very article in which they previously rejected double effect reasoning and came to the opposite conclusion, stating, “Although the overall goal of terminal sedation is to relieve otherwise uncontrollable suffering, life- prolonging therapies are withdrawn with the intent of hastening death(4)."
We agree that “proportionate palliative sedation” is often an appropriate application of double effect at the end of life. It is our view, however, that Quill and Brock were previously correct in judging that the form of palliative sedation they have called PSU involves the intention to hasten death, and is, therefore, not permitted by double effect, and would be better described as “Sedation to Death(5)."
Do the authors now accept the ethical importance of double-effect; have they here simply misapplied it? Do they err in citing their previous article? In the face of such apparent self-contradiction, their vigorous endorsement of the ethical propriety of intentionally sedating patients to the point of unconsciousness seems premature.
References
1. Quill TE, Lo B, Brock DW, Meisel A. Last-resort options for palliative sedation. Ann Intern Med. 2009 Sep 15;151(6):421-4.
2. Sulmasy DP. ‘Re-inventing’ the rule of double effect. In: The Oxford Handbook of Bioethics, ed. B Steinbock, Oxford: Oxford University Press, 2007, 114-149.
3. Cavanaugh TE. Double effect reasoning: doing good and avoiding evil. New York: Oxford University Press, 2006
4. Quill TE, Dresser R, Brock DW. The rule of double effect--a critique of its role in end-of-life decision making. N Engl J Med. 1997 Dec 11;337(24):1768-71.
5. Jansen LA, Sulmasy DP. Sedation, alimentation, hydration, and equivocation: careful conversation about care at the end of life. Ann Intern Med. 2002 Jun 4;136(11):845-9.
Conflict of Interest:
None declared
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Palliative sedation: the last resort may not be the best
Submit responseWe are pleased that Quill et al. recognize a distinction between Proportionate Palliative Sedation (PPS)—vigorous treatment of physical symptoms recognizing that sedation might be a side-effect—and Palliative Sedation to Unconsciousness (PSU)—intending to sedate the patient to unconsciousness (1). In drafting clinical policies, we encourage maintaining as bright a line as possible between these two types of palliative sedation. While there will always be grey areas, maintaining this distinction and not crossing the line into intentionally sedating patients to unconsciousness will better serve our patients, their families, and our profession.
The authors recognize that sedation for existential suffering is deeply morally controversial. Yet their broad and ambiguous description of the indications for “PSU” already opens the door for sedation for existential suffering. The authors state that “PSU” is “usually initiated” when “continuing consciousness under the circumstances is unacceptable.” Existential suffering is precisely the patient’s awareness (the “continuing consciousness”) of his or her existential situation as a finite, embodied person facing both physical symptoms and the suffering that results from the confrontation with questions of meaning, value, and relationship that dying inevitably occasions.
Over our decades of experience in accompanying dying patients and their families, we have found that it is often the very patient who has significant unaddressed and/or unresolved existential needs who experiences the most refractory physical symptoms. Under the proposal of Quill et al., it would be exactly the patients who most need to have their existential suffering addressed who will be sedated to unconsciousness instead.
A key practical concern is that unconscious patients cannot tell us what they are experiencing. Sedation alone does not always relieve physical symptoms, as data regarding awareness under anesthesia now demonstrate (2). The patient in the case they describe might still have died in horrific nausea without the ability to complain about it. Using increasing doses of drugs that are active against the symptom, tolerating unconsciousness as a side-effect (PPS), is better suited to patient- centered care.
Proportionate palliative sedation is often a reasonable and morally acceptable approach to treating refractory symptoms at the end of life. Intentionally sedating patients to unconsciousness raises far too many questions to consider it the standard of care such that a clinician or institution should be obliged to explain why they do not offer it.
References
1. Quill TE, Lo B, Brock DW, Meisel A. Last-resort options for palliative sedation. Ann Intern Med. 2009 Sep 15;151(6):421-4.
2. Davis, MP. Does Palliative Sedation Always Relieve Symptoms? Journal of Palliative Medicine. -Not available-, ahead of print. doi:10.1089/jpm.2009.0148.
Conflict of Interest:
None declared
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The Rule of the Double Effect
Submit responseThe Perspective on options for palliative sedation (1) by Quill et al. refers to the doctrine of double effect as originating from Catholic theology. This is true only in a certain sense, which could give the impression that this doctrine or rule applies only to Catholics. Catholic theology does teach doctrines such Purgatory, for example, that Catholics accept because of their faith in God, in the inerrancy of Scripture, and in the infallibility of the Church in matters of faith and morals. The rule of the double effect, however, is a different kind of teaching in that its truth can be known also by reason alone: it is a method for discerning the ethical justification of actions that have two effects, one good and one evil (2). In this sense, then, the rule is relevant to all people irrespective of whether their belief is in God or in atheism. A recent study by Hauser et al. (3) illustrates the point: 85% of individuals found morally permissible theoretical scenarios that were in conformity to the rule of double effect, and only 12 % of them agreed with moral scenarios that violated the rule’s requirements. These results did not vary significantly according to the age, sex, ethnicity, national origin, level of education, or religious affiliation (or lack thereof) of the 5,000 study subjects. Even more remarkable, the majority of study participants could not provide reasoned justifications for their choices. This suggested to the study’s authors that the principle of double effect is so engrained in our moral decision-making that its underlying reasoning need not even arise to a conscious level.
It would seem desirable to include the requirements of the rule of double effect as basic principles in developing policies and procedures regulating difficult “last-resort” options such as proportional palliative sedation (PPS) or palliative sedation to unconsciousness (PSU) for patients at the end of their lives. The rule’s universal principles are ideally suited to assist patients, families, health care professionals, administrators, and lawmakers in the ethical assessment of PPS and PSU in general, and in individual cases. The clinical case described by Quill et al. (1) states that some providers felt uncomfortable agreeing to these last-resort options. Such discomfort might have been avoided if they had assessed the justification of PPS and/or PSU according to the rule of double effect.
References
1. Quill TE, Lo B, Brock DW, Meissel A: Last-resort options for palliative sedation. Ann Intern Med 2009;151:421-424.
2. O’Donnell TJ: Medicine and Christian Morality. Third Edition. Alba House, New York, 1996:30-34pp.
3. Hauser M, Cushman F, Young L, Jin RK, Mikhail J: A dissociation between moral judgments and justifications. Mind Language 2007;22:1-21
Conflict of Interest:
None declared
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Dimension of death processes and language at end of life
Submit responseI have some concerns about adding more new language for End of life care. Death is seen as deep experience for community built through shared experiences, rituals and tradition. All this language at end of life has created more problems in managing death. We as medical community and rest of society must need to see the death as positive outcomes during hospice and palliative care for each individual patient at end of life. Death is not an event but has become process happening in home or institution. The fundamental difference is moral understanding of death as doing good or bad, and avoiding good or bad. Each one in combination can be seen as proper or improper methods and positive and negative outcomes depend on how we see each act and outcome of death. If we can built up consensus on proper methods of doing good and not avoid doing good and avoiding bad and not doing bad all the time.
Negative outcomes
( death seen as wrong outcome)
Proper methods
( palliative care)
Positive outcomes
( death seen as right outcome)Acting Good
Proper methods
( palliative care)
Negative outcomes
( death seen as wrong outcome)
Improper methods
( euthanasia)
Positive outcomes
( death seen as right outcome)Acting bad
Improper methods
(euthanasia)
Avoiding
good doing
good
Dimension of death processes and language at end of life
Clinical safeguards for all types of palliative sedations, irrespective of language, are to ensure effectiveness of palliative care and fully informed consent from the patients and families. These safeguards also maintain diagnostic and prognostic clarity with respect to patient’s disease and lifespan. It is prudent to obtain independent second opinion and provide documentation and review for complex cases. The rule of double effect is a conceptually and psychologically complex doctrine that distinguishes between permissible and prohibited actions by relying heavily on the clinician's intent. Clinical intentions may sometimes be more complex and ambiguous than those accounted for by the double effect and does not diminish the fact that the invocation of this principle allows the patient and treating clinicians to maintain an ethical equilibrium in this difficult situation.(1)
References
- Portenoy RK, Cherny NI. Palliative options. Journal of Palliative care 1994;10:31
Conflict of Interest:
None declared
- Portenoy RK, Cherny NI. Palliative options. Journal of Palliative care 1994;10:31
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In Response to Pallitave Care
Submit responseWe read with great interest the recent paper, “Last Resort Options for Palliative Sedation,” wherein Quill et al presented and discussed three categories of palliative sedation: ordinary sedation (OS), proportionate palliative sedation (PPS) and palliative sedation to unconsciousness (PSU)(1). We wish to highlight an aspect that is shared by these practices, and shared by all attempts to justify sedation: the notion that the degree of sedation should match the symptoms – proportionality.The prominence of proportionality in this and other discussions of palliative sedation suggests a simpler and ethically clearer classification that we wish to put forward here. Instead of “ordinary,”,”proportionate” and “unconscious” sedation, we suggest that all palliative sedation be classified as “proportionate palliative sedation.” This is not as a “confusion” of types of palliative sedation as the article suggests, but a helpful re-conception. Under the notion of proportionality, all types of palliative sedation are understood to be given only to the extent demanded by symptoms. Low demands imply minimal sedation and higher demands imply greater sedation. In this way, prognosis does not change the rationale or the practice of sedation, but only places limits on the degree of acceptable sedation. The closer the patient is to death the higher the level and duration of acceptable sedation that may be used (though sometimes low levels of sedation will still be sufficient). We believe the classification presented by Quill et al to be reasonable and helpful, but we present here our amendment for simplicity and ethical clarity. Considering all palliative sedation as proportionate palliative sedation avoids the inevitable difficulties of distinguishing between ordinary, proportionate and unconscious sedation. This is particularly so in the case where palliative sedation is titrated to the point of near or total unconsciousness. Classifying some sedation as “palliative sedation to unconsciousness” also risks blurring the importance of intention to the practice of palliative sedation (2). Considering all palliative sedation as proportionate underscores the ethical imperative that in using sedation the intention is to palliate and not to hasten death.
References
1. Quill TE, Lo B, Brock DW, Meisel A. Last Resort Options for Palliative Sedation. Ann Intern Med, 2009;151:421-424
2. De Graff A and Dean M, Palliative Sedation Therapy in the Last Weeks of Life: A Literature Review and Recommendations for Standards. J Palliat Med, 2007;10(1):67-85
Conflict of Interest:
None declared
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Palliative sedation
Submit responseIn their paper "Last-Resort for Palliative Sedation" Quill et al distinguish 3 types of palliative sedation with a view to discussing the legal & ethical issues arising from each type (1). In my view, as a palliative care physician, such distinctions are unnecessary in clinical practice and really represent points along a spectrum of palliative sedation. Certainly in Australia the majority view amongst my colleagues would be that all sedation in the palliative setting should be "proportianate." In other words, if sedation is required for symptom management then the dose of medications used should be quickly (and in some cases rapidly) titrated to effect.In many cases this will result in minimal sedation but effective symptom control (called "ordinary sedation" by Quill et al) but in others significant sedation will be necessary to relieve otherwise intractable suffering. Whether this is to complete unconsciousness or not should merely depend on the patient's response to the treatment. I do not see any difficult ethical issues that arise from this approach. It is our duty as palliative care physicians to relieve suffering and in a minority of cases this might just mean rendering the patient unconscious. The intent is clear and there is no evidence in the literature that such an approach hastens death in an already dying patient.
References
1. Timothy E. Quill, Bernard Lo, Dan W. Brock, and Alan Meisel Last-Resort Options for Palliative Sedation Ann Intern Med 2009; 151: 421-424
Conflict of Interest:
None declared
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Palliative Sedation: An Intervention Patients are Entitled to Choose
Submit responsePalliative sedation to unconsciousness is accepted in both law(by the US Supreme Court in Glucksberg) and medicine. A substantial body of authoritative medical literature, including clinical practice guidelines, establishes this. A provider who fails to inform a terminally ill patient with refractive symptoms about this intervention or to provide it to a patient who chooses it, or at minimum to arrange transfer of care to a willing provider, is practicing outside standard of care. Such conduct can give rise to professional disciplinary action as well as a civil tort action for medical malpractice or possibly elder abuse. A claim of this nature could give rise to significant financial liability. In a case where pain management was inadequate in the context of terminal cancer care, a jury found the physician to have been negligent and awarded survivors $1.5M(Bergman v Chin, CA). Suffering dying patients are entitled to know about and be able to choose palliative sedation.
Conflict of Interest:
None declared
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Requests for "Doing Everything" and Physicians' Nonmaleficent Obligations
Submit responseIn their article “Discussing Treatment Preferences with Patients Who Want Everything”(1), Drs. Quill, Arnold, and Back offer a great deal of practical wisdom in responding to these sorts of patient requests. However, they suggest that the “…clinician should honor the patient’s philosophy and order ‘full CPR-no limits’ status, even if it has high burden and low likelihood of success.” The authors also recommend that if the patient’s mind is set “…continuing to negotiate around limit setting is unlikely to be productive and may feel abusive.” While I agree with this latter statement, the former seems to discount physicians’ nonmaleficent obligations, that is, the fundamental obligation to protect patients from harms, particularly for the defined categories of patients for whom CPR offers an extremely remote chance of survival to hospital discharge. Rather, an approach to these patients that attends to physicians’ nonmaleficent obligations and that avoids badgering patients includes 1. clearly describing the entirety of the patient’s health status, and educating the patient why these comorbidities makes concomitant cardiac arrest irreversible, 2. describing what CPR entails and why the physician-as-advocate wants to protect the patient from this trauma at end-of-life, and 3. describing all that will be done for them when their heart fails – a focus on maintenance of dignity and intensive palliation. Not offering CPR to a patient when it is clearly not a genuine medical option is more than ethically defensible, it is arguable ethically obligatory, because offering such CPR can violate nonmaleficent obligations (2). When patients request “everything”, physicians should vigorous advocate for the avoidance of disproportion harms and these should be prominent among the sorts of advocacy actions the authors wisely recommend.
References
1. Quill TE, Arnold R, Back AL. Discussing Treatment Preferences with Patients Who Want Everything. Ann Intern Med. 2009;151:345-349.
2. Tomlinson T, Brody H. Ethics and Communication in Do-Not-Resuscitate Orders. N Engl J Med. 1988;318(1)43-46.
Conflict of Interest:
None declared