The Right to Die with Dignity: An Argument in Ethics and Policy

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The Right to Die with The Right to Die with Dignity: Dignity: An Argument in Ethics An Argument in Ethics

and Policyand Policy

Raphael Cohen-AlmagorRaphael Cohen-Almagor

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The DilemmaThe Dilemma

A person suffers a great pain and wants to A person suffers a great pain and wants to die. die.

Those who believe that life is intrinsically Those who believe that life is intrinsically valuable object to taking action on the valuable object to taking action on the personperson’’s desire. s desire.

But their objection ignores the autonomy of But their objection ignores the autonomy of the agent concerned. the agent concerned.

Can life be intrinsically valuable Can life be intrinsically valuable independently of the interests of the independently of the interests of the individual? Do these persons (or the state) individual? Do these persons (or the state) have the right to impose their will over the have the right to impose their will over the will of the individual? will of the individual?

Key conceptsKey concepts

LibertyLibertyAutonomyAutonomyDignityDignityRespectRespectConcernConcernSufferingSufferingQuality of LifeQuality of LifePhysician’s RolePhysician’s Role

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Key conceptsKey concepts

Ethics v. Policy MakingEthics v. Policy MakingFear of AbuseFear of AbuseControl MechanismsControl Mechanisms

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LibertyLiberty

Liberty is required in order to enable Liberty is required in order to enable people to discover, from the open people to discover, from the open confrontation of the ideas that are confrontation of the ideas that are cherished in their society, their own cherished in their society, their own views, their beliefs, and their future views, their beliefs, and their future life plans. life plans.

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LibertyLiberty

Liberty enables autonomy, self-rule, Liberty enables autonomy, self-rule, and self-direction. and self-direction.

Accordingly, the view is that Accordingly, the view is that individuals should be left to govern individuals should be left to govern their affairs without being their affairs without being overwhelmingly subject to external overwhelmingly subject to external forces. forces.

Patients should be at liberty to end Patients should be at liberty to end their lives if they so choose.their lives if they so choose.

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AutonomyAutonomy

The central idea of autonomy is of The central idea of autonomy is of self-rule, or self-direction.self-rule, or self-direction.

People are autonomous when they People are autonomous when they see themselves as sovereign in see themselves as sovereign in deciding what to believe in and in deciding what to believe in and in weighing competing reasons for weighing competing reasons for action.action.

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DignityDignityTo have dignity means to look at To have dignity means to look at

oneself with self-respect, with some oneself with self-respect, with some sort of satisfaction. sort of satisfaction.

Timing of death: people should be Timing of death: people should be allowed, whenever possible, to choose allowed, whenever possible, to choose the time of their departure; and the time of their departure; and

the way people die: with the help of the way people die: with the help of medical professionals, people should medical professionals, people should be able to control the process of be able to control the process of dying, maintaining autonomy at the dying, maintaining autonomy at the end of life, not being humiliated, and end of life, not being humiliated, and perceiving themselves with honor. perceiving themselves with honor.

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DignityDignity

Life Life qua qua life is not that important but life is not that important but rather what one does with onerather what one does with one’’s life. s life. Life in earnest is important, not just Life in earnest is important, not just the mechanical processes that define the mechanical processes that define life in the superficial meaning of the life in the superficial meaning of the term. term.

That oneThat one’’s heart is beating and that s heart is beating and that one is able to breath are not one is able to breath are not sufficient reasons to maintain life.sufficient reasons to maintain life.

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DignityDignity

We must strive to reconcile the duty We must strive to reconcile the duty of keeping a person alive with her of keeping a person alive with her right to keep her dignity, which may right to keep her dignity, which may also be considered as an intrinsic also be considered as an intrinsic value. value.

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Respect for OthersRespect for Others

The objection to the The objection to the ‘‘sanctity of lifesanctity of life’’ model is accompanied by support for model is accompanied by support for the the Respect for Others Respect for Others Argument. Argument.

This argument is derived from the This argument is derived from the Kantian deontological school that Kantian deontological school that accords all people equal respect. accords all people equal respect.

Respect for a person means seeing Respect for a person means seeing the other as an end rather than as a the other as an end rather than as a means to something. means to something.

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KantKant

As Immanuel Kant explains, persons are not As Immanuel Kant explains, persons are not merely subjective ends, whose existence as merely subjective ends, whose existence as an effect of our actions has a value for us, an effect of our actions has a value for us, but such beings are objective ends,but such beings are objective ends, i.e., i.e., they exist as ends in themselves. they exist as ends in themselves.

Such an end, Kant maintains, Such an end, Kant maintains, ““is one for is one for which there can be substituted no other end which there can be substituted no other end to which such beings should serve merely to which such beings should serve merely as means, for otherwise nothing at all of as means, for otherwise nothing at all of absolute value would be found anywhere.absolute value would be found anywhere.””

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RawlsRawls

We should give equal consideration to the We should give equal consideration to the interests of others and should grant equal interests of others and should grant equal respect to the othersrespect to the others’’ life projects so long life projects so long as these do not deliberately undermine as these do not deliberately undermine the interests of others by interfering in a the interests of others by interfering in a disrespectful manner. disrespectful manner.

As John Rawls asserts, As John Rawls asserts, ““the public culture the public culture of a democratic societyof a democratic society”” is committed to is committed to seeking forms of social cooperation that seeking forms of social cooperation that can be pursued on a basis of mutual can be pursued on a basis of mutual respect between free and equal persons.respect between free and equal persons.””

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ConcernConcern

This line of reasoning should be This line of reasoning should be supplemented by our emphasis on supplemented by our emphasis on the notion of concern. the notion of concern.

The notion of The notion of ‘‘concernconcern’’ signals the signals the value of well-being: we ought to value of well-being: we ought to show equal concern for each show equal concern for each individualindividual’’s good, to acknowledge s good, to acknowledge that human beings are not only that human beings are not only rational creators but also emotional rational creators but also emotional creatures. creatures.

ConcernConcern

Treating people with concern means Treating people with concern means treating them with empathy, viewing treating them with empathy, viewing people as human beings who may be people as human beings who may be furious and frustrated, who are furious and frustrated, who are capable of smiling and crying, of capable of smiling and crying, of careful-decision making and of careful-decision making and of impulsive reactions. impulsive reactions.

‘‘ConcernConcern’’ means giving equal weight means giving equal weight to a personto a person’’s life and autonomy.s life and autonomy.

Mind, body, communication.Mind, body, communication.

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SufferingSuffering

SubjectiveSubjectiveLife of suffering is not worth livingLife of suffering is not worth livingMakes death attractiveMakes death attractivePalliative carePalliative care

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Palliative CarePalliative Care

Until 2000, palliative care was under-Until 2000, palliative care was under-developed in both Belgium and the developed in both Belgium and the Netherlands.Netherlands.

Palliation seemed to be opposed to Palliation seemed to be opposed to euthanasia.euthanasia.

Both countries preferred to develop Both countries preferred to develop the practice of euthanasia.the practice of euthanasia.

‘‘Quality of LifeQuality of Life’’ Positive connotations, for example, in Positive connotations, for example, in

rehabilitation, cosmetic treatments, rehabilitation, cosmetic treatments, psychiatry, and psychology psychiatry, and psychology

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‘‘Quality of LifeQuality of Life’’

However, when dealing with end of However, when dealing with end of life issues, ethicists who support life issues, ethicists who support euthanasia use the term euthanasia use the term ‘‘quality of quality of lifelife’’ in a negative sense more often in a negative sense more often than in a positive one, meaning that than in a positive one, meaning that they do not seek to improve the they do not seek to improve the patientpatient’’s life but to end it.s life but to end it.

Quality of LifeQuality of Life

A subjective concept, meaning that A subjective concept, meaning that one’s quality of life is determined by one’s quality of life is determined by one’s personal life circumstancesone’s personal life circumstances

Physician’s RolePhysician’s Role

To healTo healTo reduce sufferingTo reduce sufferingTo improve quality of lifeTo improve quality of lifeTo help patients find meaning in lifeTo help patients find meaning in lifeTo kill?To kill?““Why us?”Why us?”““Philosopher’s assisted suicide”Philosopher’s assisted suicide”

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Role of PhysiciansRole of Physicians

In both Belgium and the Netherlands, In both Belgium and the Netherlands, the physician is required to devote the physician is required to devote energies in the patient and her loved energies in the patient and her loved ones, to consult with other ones, to consult with other specialists, to spend time and better specialists, to spend time and better the communication between all the communication between all people concerned. people concerned.

Ethics v. Policy MakingEthics v. Policy Making

Difference between morally Difference between morally principled views and policy-makingprincipled views and policy-making

Difference between case-by-case Difference between case-by-case decision-making and creating a decision-making and creating a general frameworkgeneral framework

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Euthanasia v. PASEuthanasia v. PAS

One way to address this issue of One way to address this issue of abuse is to advance physician-abuse is to advance physician-assisted suicide for all patients who assisted suicide for all patients who are able to swallow oral medication. are able to swallow oral medication.

However, in Belgium and in the However, in Belgium and in the Netherlands there is a tradition of Netherlands there is a tradition of doctors administering lethal drugs. doctors administering lethal drugs.

In addition, there is also the issue of In addition, there is also the issue of taking responsibility. Physicians in taking responsibility. Physicians in both countries like to have control both countries like to have control over the process. over the process.

Euthanasia v. PASEuthanasia v. PAS

Consequently, in Belgium and the Consequently, in Belgium and the Netherlands there are relatively few Netherlands there are relatively few cases of PAS. cases of PAS.

I suggest putting this issue on public I suggest putting this issue on public agenda, speaking openly as people agenda, speaking openly as people in Belgium like and appreciate about in Belgium like and appreciate about the findings and the fear of abuse, the findings and the fear of abuse, and suggest PAS as an alternative to and suggest PAS as an alternative to euthanasia.euthanasia.

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ReportingReporting

In both Belgium and the Netherlands, In both Belgium and the Netherlands, problems with reporting.problems with reporting.

Why?Why? Importance of reportingImportance of reporting

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ConsultationConsultation

In both countries, the physician In both countries, the physician practicing euthanasia is required to practicing euthanasia is required to consult an independent colleague in consult an independent colleague in regard to (a) the hopeless condition regard to (a) the hopeless condition of the patient, and (b) the of the patient, and (b) the voluntariness of the request.voluntariness of the request.

In both Belgium and the In both Belgium and the Netherlands, the independency Netherlands, the independency requirement has been requirement has been compromised.compromised.

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ConsultationConsultation Studies showed, unsurprisingly, that almost all Studies showed, unsurprisingly, that almost all

consultants regarded the request of the consultants regarded the request of the patient to be well-considered and persistent, patient to be well-considered and persistent, conceded that there were no further conceded that there were no further alternative treatment options, and agreed with alternative treatment options, and agreed with the intention to perform euthanasia or assisted the intention to perform euthanasia or assisted suicide. suicide.

In general, the GPs did not need to change In general, the GPs did not need to change their views or plans following the consultation. their views or plans following the consultation.

My own study (1999) showed that the My own study (1999) showed that the consultants often were not independent from consultants often were not independent from the physician who was asking for their opinion.the physician who was asking for their opinion.

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ConsultationConsultation

Since 2000, SCEN in the Netherlands.Since 2000, SCEN in the Netherlands. Since 2003, Since 2003, LEIFartsenLEIFartsen in Belgium. in Belgium. In Belgium, there are no rules regarding In Belgium, there are no rules regarding

who decides the identity of the consultant. who decides the identity of the consultant. The only rule is that the consultant needs The only rule is that the consultant needs

to be independent.to be independent. Probably doctors approach like-minded Probably doctors approach like-minded

physicians. physicians. Unclear what happens if there is Unclear what happens if there is

disagreement between doctors. This issue disagreement between doctors. This issue deserves attention and probing.deserves attention and probing.

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Suggestions for ImprovementSuggestions for Improvement

Physician-assisted suicide, not Physician-assisted suicide, not euthanasia, to ensure better control euthanasia, to ensure better control that at least in the Netherlands is that at least in the Netherlands is lacking.lacking.

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Guideline 1Guideline 1

The physician should not suggest The physician should not suggest assisted suicide to the patient. assisted suicide to the patient. Instead, it is the patient who should Instead, it is the patient who should have the option to ask for such have the option to ask for such assistance. assistance.

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Guideline 2Guideline 2 The request for physician-assisted suicide The request for physician-assisted suicide

of an adult, competent patient who suffers of an adult, competent patient who suffers from an intractable, incurable and from an intractable, incurable and irreversible disease must be voluntary. The irreversible disease must be voluntary. The decision is that of the patient who asks to decision is that of the patient who asks to die without pressure, because life appears die without pressure, because life appears to be the worst alternative in the current to be the worst alternative in the current situation. The patient should state this wish situation. The patient should state this wish repeatedly over a period of time. repeatedly over a period of time.

These requirements appear in the abolished These requirements appear in the abolished Northern Territory law in Australia, the Northern Territory law in Australia, the Oregon Oregon Death with Dignity ActDeath with Dignity Act, as well as in , as well as in the Dutch and Belgian Guidelines. the Dutch and Belgian Guidelines.

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At times, the patientAt times, the patient’’s decision might be s decision might be influenced by severe pain. The role of influenced by severe pain. The role of palliative care can be crucialpalliative care can be crucial. .

The Belgian law as well as the Oregon The Belgian law as well as the Oregon Death with Dignity Act Death with Dignity Act require the require the attending physician to inform the patient attending physician to inform the patient of all feasible alternatives, including of all feasible alternatives, including comfort care, hospice care and pain comfort care, hospice care and pain control. control.

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The patient must be informed of the The patient must be informed of the situation and the prognosis for situation and the prognosis for recovery or escalation of the disease, recovery or escalation of the disease, with the suffering that it may involve. with the suffering that it may involve. There must be an exchange of There must be an exchange of information between doctors and information between doctors and patients.patients.

The Belgian law and the The Belgian law and the OregonOregon Death with Dignity ActDeath with Dignity Act require thisrequire this..

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Guideline 5

It must be ensured that the patient’s decision is not a result of familial and environmental pressures.

It is the task of social workers to examine patients’ motives and to see to what extent they are affected by various external pressures.

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The decision-making process should The decision-making process should include a second opinion in order to include a second opinion in order to verify the diagnosis and minimize the verify the diagnosis and minimize the chances of misdiagnosis, as well as chances of misdiagnosis, as well as to allow the discovery of other to allow the discovery of other medical options. medical options.

A specialist, who is not dependent on A specialist, who is not dependent on the first doctor, either professionally the first doctor, either professionally or otherwise, should provide the or otherwise, should provide the second opinion. second opinion.

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It is advisable for the identity of the It is advisable for the identity of the consultant to be determined by a consultant to be determined by a small committee of specialists (like small committee of specialists (like the Dutch SCEN), who will review the the Dutch SCEN), who will review the requests for physician-assisted requests for physician-assisted suicide. suicide.

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Some time prior to the performance of Some time prior to the performance of physician-assisted suicide, a doctor and a physician-assisted suicide, a doctor and a psychiatrist are required to visit and psychiatrist are required to visit and examine the patient so as to verify that examine the patient so as to verify that this is the genuine wish of a person of this is the genuine wish of a person of sound mind who is not being coerced or sound mind who is not being coerced or influenced by a third party. The influenced by a third party. The conversation between the doctors and the conversation between the doctors and the patient should be held without the patient should be held without the presence of family members in the room presence of family members in the room in order to avoid familial pressure. A date in order to avoid familial pressure. A date for the procedure is then agreed upon.for the procedure is then agreed upon.

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The patient can rescind at any time and in any The patient can rescind at any time and in any manner. manner.

This provision was granted under the abolished This provision was granted under the abolished Australian Northern Territory ActAustralian Northern Territory Act and under theand under the OregonOregon Death with Dignity Act.Death with Dignity Act.

The Belgian Euthanasia Law holds that patients The Belgian Euthanasia Law holds that patients can withdraw or adjust their euthanasia can withdraw or adjust their euthanasia declaration at any timedeclaration at any time..

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Physician-assisted suicide may be Physician-assisted suicide may be performed only by a doctor and in the performed only by a doctor and in the presence of another doctor. presence of another doctor.

The decision-making team should include at The decision-making team should include at least two doctors and a lawyer, who will least two doctors and a lawyer, who will examine the legal aspects involved. examine the legal aspects involved. Insisting on this protocol would serve as a Insisting on this protocol would serve as a safety valve against possible abuse. safety valve against possible abuse. Perhaps a public representative should also Perhaps a public representative should also be present during the entire procedure, be present during the entire procedure, including the decision-making process and including the decision-making process and the performance of the act. the performance of the act.

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Guideline 11

Physician-assisted suicide may be conducted in one of three ways, all of them discussed openly and decided upon by the physician and the patient together: (1) oral medication; (2) self-administered, lethal intravenous infusion; (3) self-administered lethal injection. Oral medication may be difficult or impossible for many patients to ingest because of nausea or other side effects of their illnesses. In the event that oral medication is provided and the dying process is lingering on for long hours, the physician is allowed to administer a lethal injection.

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Doctors may not demand a Doctors may not demand a special special feefee for the performance of assisted for the performance of assisted suicide. The motive for physician-suicide. The motive for physician-assisted suicide is humane, so there assisted suicide is humane, so there must be no financial incentive and no must be no financial incentive and no special payment that might cause special payment that might cause commercialization and promotion of commercialization and promotion of such procedures.such procedures.

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Guideline 13Guideline 13 There must be extensive documentation in the There must be extensive documentation in the

patient’s medical file, including the following: patient’s medical file, including the following: diagnosis and prognosis of the disease by the diagnosis and prognosis of the disease by the attending and the consulting physicians; attending and the consulting physicians; attempted treatments; the patient’s reasons for attempted treatments; the patient’s reasons for seeking physician-assisted suicide; the patient’s seeking physician-assisted suicide; the patient’s request in writing or documented on a video request in writing or documented on a video recording; documentation of conversations with recording; documentation of conversations with the patient; the physician’s offer to the patient to the patient; the physician’s offer to the patient to rescind his or her request; documentation of rescind his or her request; documentation of discussions with the patient’s loved ones; and a discussions with the patient’s loved ones; and a psychological report confirming the patient’s psychological report confirming the patient’s condition. condition.

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Guideline 14Guideline 14 Pharmacists should Pharmacists should

also be required to also be required to report all report all prescriptions for prescriptions for lethal medication, lethal medication, thus providing a thus providing a further check on further check on physiciansphysicians’’ reporting.reporting.

This is not the case This is not the case now in both now in both countries.countries.

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• Doctors must not be coerced into taking actions that contradict their heart and conscience, or their understanding of their role.

• This was provided under the Northern Territory Act.

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The local medical association should The local medical association should establish a committee, whose role establish a committee, whose role will be not only to investigate the will be not only to investigate the underlying facts that were reported underlying facts that were reported but also to investigate whether there but also to investigate whether there are are ““mercymercy”” cases that were not cases that were not reported and/or that did not comply reported and/or that did not comply with the with the GuidelinesGuidelines..

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Licensing sanctions will be taken to punish Licensing sanctions will be taken to punish those health care professionals who those health care professionals who violated the violated the GuidelinesGuidelines, failed to consult or , failed to consult or to file reports, engaged in involuntary to file reports, engaged in involuntary euthanasia without the patient’s consent or euthanasia without the patient’s consent or with patients lacking proper decision-with patients lacking proper decision-making capacity. making capacity.

Physicians who failed to comply with the Physicians who failed to comply with the above above GuidelinesGuidelines will be charged and will be charged and procedures to sanction them will be brought procedures to sanction them will be brought by the Disciplinary Tribunal of the Medical by the Disciplinary Tribunal of the Medical Association. Sanctions should be significant.Association. Sanctions should be significant.

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Thank youThank you

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The Right to Die with Dignity: An Argument in Ethics and Policy