Policy Brief PAD- Final
Transcript of Policy Brief PAD- Final
A Dignified Departure1
Laura Chan 07731390
A Dignified Departure:
An Argument for the Legalization of Physician Assisted Death
Field Focus: Criminal Justice and Corrections
Dennis Bracken & Phil Simon
Friday December 5, 2014
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Introduction“Probably not many people would use such an option, but making it legal would certainly
prompt a much-needed discussion about what it means to prolong life without prolonging the capacity to enjoy it.” – (Appleby, 2014)
End-of-Life options are not new concepts in Canadian medicine, but are part of an
ongoing debate that has ebbed and flowed through the last thirty years. To define terms
commonly heard from both sides; physician assisted death, (PAD), is where the patient actively
ends their own life, for example, ingesting life-ending medication prescribed to them by a doctor.
Euthanasia can be described as passive or active. This refers to the doctor’s role; either hastening
death by withholding treatment or administering life-ending drugs. For the purposes of this
paper, the term physician assisted death will include the variations mentioned above, they will be
distinguished between when needed. Under current legislation both acts hold equal chance of
persecution, if not so much socially as in the past, legally. The onus is therefore on the courts to
reconsider the impact of current law on the population as well as that of changes to what actions
will be allowed.
I have always been aware of the issue, but my interest peaked when I came upon a
documentary, “How to Die in Oregon”, which chronicled the path taken by the state to legalize
PAD in its least intrusive form, allowing a prescription to be written and filled for use by the
individual. As a private citizen and after viewing the film, I am concerned with the limitations of
traditional medical care, particularly what is allowed in palliative settings. As a social work
student, I see this type of legislation as needing expansion to include PAD, in all its forms, to
allow us as individuals control over our own lives, convey respect for our dignity as human
beings and preserve the integrity of the relationships formed with others, specifically caregivers.
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Restriction to End-of-Life options results in the oppression and denial of rights of
everyone and is a primary concern in regards to those affected by chronic, degenerative or
critical illness. My interest in pursuing a law degree brought me to cover the issue for this brief
as the current penalty for assisting in a suicide is quite severe. Though the term “suicide” is
rejected by proponents and replaced with the less stigmatizing ‘death’, the act of assisting in a
suicide carries with it a loss of license as well as a lengthy prison sentence.
Background “If I cannot give consent to my own death, whose body is this? Who owns my life?” – Sue Rodriguez, (in Einstat-Weinrib, 1994, emphasis added).
Sue Rodriguez, Gloria Taylor and many others have brought the issue of physician
assisted death to the fore on many occasions, yet with these opportunities we had done nothing.
The Supreme Court of Canada has recently heard arguments for the decriminalization of
Physician Assisted Death, (PAD). This issue has had a long history in our country and across the
world. Once a very contentious issue, recent polls indicate support for the move to amend the
criminal code has grown. Even so, it remains to be seen if changing social attitudes will be a
strong enough factor to influence the final decision. In a poll taken just after the start of the
Gloria Taylor case began, The National Post reported that 67% of Canadians supported
legalizing assisted suicide, whereas only 3% of physicians consulted agreed (Blackwell, 2011).
That support has grown to 85% for the general population. Surprisingly, medical professionals in
favour of decriminalizing PAD now match that number (Dying with Dignity Canada, 2014).
The issue has been successfully in several jurisdictions, in varying ways. In all examples,
enough time has passed that the changes have proven successful, especially the definitions
guiding their implementation. There have been social conditions shown to be conducive to this
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type of legislation being passed such as careful phrasing when codifying the laws, public
education of the new acts and , cultural, religious/spiritual heterogeneity, nothing that could not
be accomplished in Canada, and certainly, environmentally speaking, anything that is not found
here. So in taking the lessons from these earlier models, we would not be reinventing the wheel,
but repositioning the individual to be the driver of their life’s path.
The Problem “I think our society is very confused about liberty. It makes no sense to prevent people who wish to die from doing so.” – Andrew Solomon (in Reynolds, 2014)
In Canada, 100,000 people are living with various forms of Multiple Sclerosis, a chronic,
progressive and degenerative disease that in some cases begins in children as young as two years
old, (MS Society of Canada, n.d.). For individuals dealing with such degenerative diseases, the
restriction of access to end-of-life options for them and their caretakers is an abuse of authority
and a form of oppression. When dealing with matters of life and death, the oppression resulting
from the limitations on choice of action can create undue stress, anxiety, and hardship for the
patients and their families.
The issue of PAD affects several professions: Social Work, Health Care and Law. The
focus of the argument is there is a need for the practice in order to carry out the mandates of all
three professions, and more importantly to assure the individual that they will have choice and
control at the end of their life.
Collaboration is needed between the professions to ensure the individual is put first. This
would include the legalization of assisted dying, all forms in a medical context; the extension of
palliative care protocols to include such practices; thorough education to all health care providers
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of them, as well as education and activism aimed at the public to inform them of their options
and remove the stigma that makes death an often uncomfortable topic of conversation.
A Social Work Stance “For all but our most recent history, dying was typically a brief process. These days, swift catastrophic illness is the exception; for most people, death comes only after long medical struggle with an incurable condition….or the multiple debilities of very old age.” (Gawande, 2010)
As social workers, we strive to meet the person where they are. In building rapport we
aim to find ways for them to navigate through their difficulties, often imposed by society. For all
our clients, especially someone suffering from a terminal, degenerative or critical illness, we
champion a holistic view of health; we are a profession focused on the bio-psycho-social and
spiritual aspects of one’s life as critical to their overall health. What we do with our lives brings
meaning to them, one should have the choice as to what this meaning is and the same control
when facing death. In a study of the individuals involved in palliative care, both professionally
and personally many trends were shown. One was that the personality of those who opted for
Physician Assisted Death were consistent with such choice, not out of character due to their
circumstances. These traits included wilful, fiercely independent, as well as reflective (Miller,
Hedlund & Soule, 2006). Their self-image, and sense of autonomy can be hampered by the
restrictions they face at such a critical time. Even if they were to go through with an assisted
death, the burden of the consequences for the parties involved can weigh heavily on them and
their family. With this barrier, we carry much responsibility in helping what is, for now, an
irreconcilable situation. We have to work to make end-of-life options the decision of those
affected by acute or prolonged illness or injury.
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Our ethics and values seem to be in line with the health care professionals who are involved in
palliative care and other critical care areas of medicine. In Gloria Taylor’s case, the right to die
follows only after we tend to the subjective aspects of the individual’s life such as their self-
image, self-esteem, sense of worth and autonomy, all which affect their quality of life. The
belief that patients have a right to self-determination is entrenched Social Work values, as well as
in law and medical ethics. Unfortunately, the existing laws do not communicate the same.
Subsequently, the patient is denied options to a decision that should ultimately be in their hands.
Pursuing the (social) justice aspect of our code, we offer an alternate view of the physician’s
actions as compassionate not criminal. Gawande’s statement expresses the issues faced when
death remains imminent, but the timing not so. As Social Workers we are granted fluidity to
work in and impact all areas of our society. Legally speaking, we must see those who assist
others with their final wishes as benevolent players in an act which recognizes the empowerment
of others at a crucial time. In this sense, social justice includes seeking justice for these allies by
pushing for amendments to the criminal code which currently put these people at risk of legal
sanctions.
The Impact on Health Care
“I worry that we have put medicine out there as a potential saviour, almost a new religion over the last 100 years….and every death is a preventable death- and that death is, in some way, a failure” – Dr. Robert Fowler (in Priest, 2011).
In debates, PAD has been compared to abortion, which before legalized, went
underground (How to die in Oregon, 2011). The same restrictions that hamper efforts by social
workers to help the individual apply to many in the health care field who wish to offer their
patients choice at the end of life. In both cases, their hands are tied. Though many have carried
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through with the request, they did so at great personal risk. These are consequences that send a
strong message to other would-be helpers as well as those who would seek their service.
Health care and medicine are areas where the basic values that guide and support
decisions on patient care are the self-determination and autonomy of the individual. Courts have
long recognized that the physician-patient relationship is built on trust; and from this relationship
stems the idea of fiduciary duty. That is the understanding that the physician must act with good
faith and loyalty toward the people they support, never placing their own personal interests ahead
of the patient's (Canadian Medical Protective Association, 2010). There are already measures in
place for end-of-life care that grant some choice to the patient. An example of this would be the
Do Not Resuscitate orders that one can request to have placed in an advanced directive. This
allows for the withholding of life saving intervention in case of medical emergency for those
terminally or critically ill.
Also, the practice of palliative sedation is used in the administration of pain relieving
medicine. At a certain degree, this can hasten death, as one’s body may be too weak and the dose
proves too strong. The argument that physician assisted death goes against the Hippocratic Oath
of do no harm, neglects the practices already in place. The difference being that palliative
sedations first objective is to manage and lessen pain, whereas active euthanasia, often carried
out by the same means is meant to terminate life. It seems arbitrary that the fashion of assistance
is what is under scrutiny, as the palliative sedation so often practiced could be likened to a Type
1 error, and following a DNR could be seen as a type 2 error, if we were to be fair. Following a
DNR is, in practice, is passive euthanasia administered with consent. Consent should be key in
any legislation allowing for PAD and a strong factor in its regulation and enactment. Indeed, the
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risks to the vulnerable are increased as long as these practices are banned and remain
underground.
Those opposed to legalizing PAD have been very vocal about the dreaded slippery slope.
The abuses of such legislation that will no doubt impact the poor, elderly, disabled. The fear that
the option will be pushed by doctors everywhere and unwilling patients subject to treatment
without consent is a great scare tactic but ignores the ethics, values and legal guidelines already
in place when it comes to patient care, namely, the concepts of beneficence, non-maleficence,
fiduciary duty and included in that, informed consent (Cohen-Almagor, 2013). Also, In many
countries where this legislation has been debated a similar sentiment of cost savings of
terminating a life versus accessing long term institutionalization has been used to oppose the
implementation. This falls short when the countries which have successfully implemented PAD
are reviewed. All are highly ranked in their economic health care commitments as well as other
social service provisions (Titterington, Rivolta & Schraufnagel, 2013). Allowing for an
expansion of health care options to include PAD does not mean that it will be a consideration for
everyone, but the option being available will make a difficult situation easier for those faced with
the choice.
In Terms of Law“Peace order and good government are the legitimate objects of legislative powers conferred by
statute” – The Canadian Constitution, preamble
Social work is not mentioned in law, but is a mandated resource in palliative care. As
such we all cross paths when the discussion of physician assisted death is re-ignited. There
remain severe repercussions for the physician who aids in the death of a patient. Currently under
section 241(b) of the Canadian Criminal Code, helping an individual commit suicide carries a
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maximum penalty of fourteen years’ incarceration, (CBC News, 2014). The professional penalty
added to that for physicians involved is loss of their license. As citizens of a developed nation
where we live longer but endure more diseases of senescence, we must change these
consequences on those who sincerely are trying to follow their ethics of do no harm. Otherwise,
the abuse of the vulnerable, which is often used as a defense against assisted suicide, has already
been imposed.
In the cases of Gloria Taylor, as well as that of Sue Rodriguez, specific concerns were
included. As one suffering from a degenerative disease, Taylor, as did Rodriguez, was seeking
exemption from the governing legislation to have a physician assist her in ending her life when it
had reached a point she felt to be no longer tolerable. Two issues raised by this situation is the
dignity of the human being, and the seemingly arbitrary nature of the existing laws. As Taylor
put it, simply taking a shower, which she could no longer do for herself, “(was) experienced as
an assault on her privacy, dignity and self-esteem”, (Dyer, 2012). The larger issue raised earlier
and unsuccessfully by Rodriguez, is the unintentional restriction put on her due simply because
of her disability. Under Canadian law, advising or assisting one towards suicide is illegal; the act
when executed by the individual herself is not. Rodriguez argued that the assisted suicide ban
created an inequality because persons capable of ending their lives could do so without
contravening Canadian law while those whose disabilities prevented them from committing
suicide would be putting themselves and any person at their aid in opposition to the law, (Avila,
1994).
American Examples
“When your conscience says law is immoral, don’t follow it” - Dr. Jack Kevorkian
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It has been almost 25years since Dr. Kevorkian’s first publicized assisted suicide. In the
time between, several states have enacted legislation allowing physician assisted dying. Oregon’s
victory in passing the Death with Dignity Act came after similar legislation failed in California
and the first attempt at the same in Washington State. One of the biggest challenges was the
position stated by opponents that prescribing the required medication violated the Controlled
Substances Act, and therefore both physician and pharmacist would be in breach of the law. This
point was dismissed, the Rx given special status within the DWDA and the legislation enacted.
Three years after its passing, loss of autonomy was given as a reason to access the DWDA; the
number of patients who received the medication still outnumbers the patients who ultimately
take it (Kondro, 2009). This is in opposition to the fear that legalizing PAD will affect the
psyches of patients and they will be more liable to give up. Though illness can impact our mental
health, each region has included an assessment piece to guard against misuse. In Oregon, the
passing of PAD legislation revealed a paradox: when allowed access to the medication to end
their life sooner, led to a surge in wellbeing and peace of mind. This in turn renewed many
patients desire to live longer. The theory behind this reaction relates back to the concept of
dignity and self-determination, the individual shifts their self-perception from “helpless victim”
to “willing survivor” (Lee, 2010). Upon a second attempt and shortly after Oregon’s victory,
Washington State passed Initiative 1000, allowing similar practice.
Both the ODWDA and WDWDA carry very strict limitations as to what practices this
term covers. Under Oregon’s individuals may acquire life ending medication by prescription
from their doctor, but must administer the medication themselves (Bollman, 2009). This poses an
obstacle to those suffering from degenerative diseases such as ALS, MS and other illnesses that
cause deterioration of mobility. Though a step in the right direction, these can be seen as half
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measures made without the consultation of all people affected. If the quality of life is the concern
and reason for the need for PAD, with the existing terms of the act legislated, what options are
left for those who are able to follow through with the practice at a time in their lives they feel is
still optimal and worth living?
Vermont’s Patient Choice at End of Life Act has allowed for a compromise between the
needed legislation and regulation of Physician Assisted Death and the autonomy and freedom of
the patient by still requiring a terminal diagnosis, but not enforcing the same 6month prognosis
as the first two states (Tucker, 2014). However, they still have to self-administer, a problem
when seeking equality under the law for those afflicted with physically limiting illnesses.
Montana challenged Right-To-Die legislation in 2007. The idea that the individual
protection of one’s personal freedoms as stated in the Constitution includes their end of life
decisions, and therefore also offer protection to those whose help is requested and assist in PAD.
This decision was brought up again in 2009, where the question of constitutional protection was
not addressed. Instead, the state has allowed for a “consent defence” in which the physician will
not be prosecuted if the process of due care was followed and informed, free and enduring
consent was given by a competent, chronically ill patient. In its ruling, the court stated that
“nothing in the Supreme Court or state statutes indicate that allowing PAD would go against
public policy” (Mason, 2010). According to Bollman (2014), bioethicists agree with the right to
the idea of individual autonomy in the end of life. The decision in Montana stated the same
sentiments: one has the right to determine one’s own fate as long as it does not impede on the
rights of another.
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International SuccessesEstablishing access to aid in dying via statute or court decision is possible. But is it necessary? Most medical care is not governed by statute or court decision, but is instead governed by professional practice standards, also referred to as best practices, or "standard of care." –Tucker, 2014
Colombia has successfully defended PAD, in all forms, from legal prosecution permitting
that certain conditions are met. The patient must be terminally ill yet competent to give consent
(Butler, Tiedmann, Nicol & Valiquet, 2010). The issue is still largely divisive in a country that is
moving forward but whose population is still largely, devoutly catholic. This has also been a
barrier to legislating similar acts in Spain for the same reasons. This religious homogeneity has
been linked to some failures to implement PAD around the world. With the passing of PAD in
several European countries, many are now in support of the change (CBC News, 2014). In the
shrinking global community we live in, many people of various spiritual and religious
backgrounds still see the importance of self-determinism as a reason to support such law.
Belgium legalized Euthanasia in 2002, there remain no regulations on Physician Assisted
Death as described in the US models (Butler, Tiedmann, Nicol & Valiquet, 2010). In these cases,
grounds for prosecution are considered on a case by case basis, and have to prove that due care
was not shown to the individual. This has led to an underreporting depending on the methods of
PAD used and reflects the difference between European countries and the importance of careful
codification as this specifies what is legal, and what is recorded due to the practice’s status
(Cohen, Wesemael, Smets, Bilsen & Deliens, 2012). In Belgium, within the eligibility criteria
there is a distinction between those patients whose death is expected in the near future or not. If
not expected soon, there are additional criteria to be met such as two additional medical doctors’
professional consult and opinion and at least one month between the request and its fulfillment
(Lewis & Black, 2013).
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Voluntary, active euthanasia has been practiced in the Netherlands, and in all practicality
legal, since 1980. It was officially legalized in 2002 and carries with it many conditions to be
met (Rurup, Smets, Cohen, Bilsen, Onwuteaka-Philipsen & Deliens, 2011). The Netherlands
model is the most comprehensive. The term PAD includes the practice used on Oregon, as well
as active euthanasia. These practices are available, after due care guidelines are met, to both the
terminally, critically ill and those who are otherwise facing unbearable, hopeless suffering. As
such, the procedures can be carried out as stated by the patients verbal request, or, in case of
advanced disease leading to inability to speak or comatose condition, an advanced directive may
be followed.
The at-risk groups named by opponents of legalizing such practices, namely, women, elderly,
uninsured, poor, racial/ethnic minorities, physically, chronically disabled, and minors were
shown to be at no increased risk once the law was passed (Battin, Van der Heide, Ganzini, Van
der Wal, & Onwuteaka-Philipsen, 2007). This is in part due to the social acceptance of the
practice before legislation came into place, but also due to the carefully considered means by
which it could be used and the intent behind its enactment. The common knowledge of the PAD
procedures available to the people of the Netherlands proves that the access to information and
options is key in successfully implementing these practices to expand the ability of palliative and
heath care in general.
Policy Recommendations Many clinicians have trouble on a moral level distinguishing between medication that might hasten death – an act that is required if the dying are to receive appropriate care - and giving drugs in order to hasten death, which is euthanasia. – LaDuke, 2004
In the debate over legalizing PAD, both sides are ultimately conveying the same values,
those for human life and autonomy (Boudreau & Somerville, 2013). The difference is in what
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they see the outcome to be. Those who advocate for the expansion of health care to include these
end of life options see them as bringing greater control to the individual, whereas, opponents fear
the choice being taken away and instead motivated by greed and social factors. In light of the
catastrophizing that has been done around the topic, there has been proof that although there may
be deontological arguments against PAD, there are also ways to view the same points in a more
moderate way. For example, the idea of the physician’s intent to be towards healing or curing
the patient, never to kill, takes away the idea that for many there is no cure. In relieving suffering
they can fulfill their duty and still respect the autonomy of the individual (Dieterle, 2007). In
putting forward the inherent wrongness of killing, again we have to ask in whose eyes? Death is
not a harm to those who seek PAD, as there comes a time when the weight and struggle to
continue on with the quantity of life exhausts the individual and detracts from the quality of their
life. Even Arch Bishop Tutu has reversed his stand on PAD. He stands by the belief in “the
sanctity of life – but not at any cost” (Crowley, 2014). Also, killing is a term that assumes
malevolent intention against another. If one wishes to die, and can acquire a physician’s aid in
doing so, no such act has been committed.
In fearing the end of advances in palliative care, there is an assumption that all patients
who are eligible for PAD will opt-in. In fact, the availability of the services has not meant an
increase in accessing them, (Bollman, 2014). The continuation of research will not be stopped by
including them into the choices one has in that situation. Indeed, Dieterle (2007) states the care
of the terminally ill has improved in both European and American jurisdictions where PAD is
practiced; the enhancement of life is another focus of palliative practice. The availability of PAD
would only help to create a fully integrated health care model. Every social policy has the
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potential for abuse. It is up to us to draft legislation that allows for PAD, with the safeguards in
place to defend against such misuse.
Luckily we are not the first at the drawing board and can use many of the lessons learned
from the other jurisdictions to formulate a complete Act that covers both concerns. In the interest
of space, I have combed through the Netherlands’ model for some items to consider when
passing PAD into law. They are as follows:
1. First, there would need to be clear definitions of the terms Physician Assisted Death,
Passive Euthanasia, and Active Euthanasia. There would then have to be the acts
considered under each of those terms. For passive euthanasia we have already used
many of these practices for decades. It is for the areas in which PAD will be
expanded into active euthanasia that we will need to be clear on what we will allow,
(prescribing and aiding in the administration of the medication.)
2. There would need to be, as always, full disclosure to the patient of their condition,
prognosis, and all of their options so as to ensure informed consent. The idea of a
living will to state the individual’s wishes for decision related to PAD upon
incapacitation would have to be written into legislation as well. With this piece, a
time period during which such a document is valid so as to be purposeful but not
indefinite, would have to be decided on.
3. There would need to be competency requirements in place, both for the physician and
patient. For the health care professionals involved, there would be a need for some
length of relationship, or consultation with the individual’s primary care provider.
This would ensure a fuller understanding of the patient’s background and current
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situation. Also, as the provision of such services would be an option to the patient, so
too would there be the choice for the doctor to provide it, or not.
The use of a required number of requests and the timing in between the requests
and the administration of PAD would also have to be taken into consideration.
Competency requirements would include the forms of PAD available to the
individual based on their prognosis. We want to legalize this to honour the autonomy
of the person, in doing so we would want to intervene only as is needed. A second
medical opinion, as well as psychiatric assessment where major depression is a
suspected factor in PAD requests would be necessary to ensure due care is followed.
4. Pending the passing of this new legislation, education must be a part of
implementation. Both for professionals in all the disciplines discussed earlier as well
as for the general public. We would need to educate people about what it means,
(their medical choices), who would have access to it and how that would look. Part of
the public education piece would be to assuage the fears of the opponents by
explaining the benefits, and more importantly the voluntary nature of these medical
procedures.
Conclusion The evidence shows that risks exist, she added, “but they can be identified and very substantially
minimised through a carefully designed system imposing stringent limits that are scrupulously
monitored and enforced.” – Judge Lynn Smith (in Dyer, 2012)
The latest polls seem favorable, and the knowledge and results shown by other
jurisdictions can be used to push for and support legislative change here in Canada. In medical
situations, including palliative care, one can request a Do Not Resuscitate, (DNR) Order, as well
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an end to life saving treatment, even if lack of that intervention results in death, (Death With
Dignity Canada, 2014). Many Canadians feel that the request and act of Physician Assisted
Death in serving the same purpose should be granted similar status. If we truly see it as such, we
need to start treating death as a part of life and start acknowledging the impact of choice in our
lives, throughout our life. We need to legalize Physician Assisted Death in all its forms to help
the individuals who work in the health care profession the freedom to follow their oath and serve
their patients’ wishes. We need comprehensive, varied options for people facing the end of life
so they can leave with a sense of control, peace and dignity. We need to act carefully, taking into
consideration the protocols used in other jurisdictions. We need to act now and reflect the will of
the Canadian population.
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References
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