Editorial: Nursing and assisted dying: Understanding the sounds of silence

by Settimio Monteverde

Death is certain, its hour is uncertain. For centuries, this ancient truism has been a strong
motif in the figurative arts, a source of religious and political control, intellectual creativity,
and social commitment. It has also been a foundational concept for nursing, long before it
became a professional practice and science. Nursing has always had a strong voice in favor of
people who are suffering, being present at their bedside and giving empathic care to the living
and the dying, helping people to cope with the certitude of death and the uncertainty of its
hour. An expression of this “natural” endeavor of nursing can be found in the preamble to the
code of ethics of the International Council of Nursing, which states that “…Nurses have four
fundamental responsibilities: to promote health, to prevent illness, to restore health and to
alleviate suffering, and culminates in stating that “The need for nursing is universal.” This
special issue of Nursing Ethics explores different perspectives and possible future directions
of this commitment in the context of assisted dying.

There is a need for a deeper analysis from the perspective of nursing ethics in the light of
actual and potential legislative changes globally. This editorial includes short summaries of
some of these changes from members of the Editorial Board of Nursing Ethics. They reflect
the situation of countries where legal provisions and/or societal debates have emerged that
necessarily involve the engagement of nurses.

Knowing about the finitude of life is particular to human beings. In the context of
breathtaking advances in medical science in prolonging biological life, the palliative care
approach translated what it meant to alleviate suffering under the conditions of modern
medicine. It became a reminder that death and dying are not to be seen as blind spots in a
medical system that creates health, but as integral aspects of life that call for a response that is
both compassionate and effective. As societies change, truisms become challenges. In
industrialized nations, both the certitude of death and the incertitude of its hour seem to be put
under scrutiny. One major reason is the success of medicine in avoiding preventable death
and in refining constantly what “preventable” means. As to the certitude of death, the dispute
about the definition of death by neurological criteria is restarted each time some refined
understandings about how the brain works are presented.
The legal battle of the parents of Jahi McMath in California, who succeeded in questioning
the validity of her daughter’s death certificate, may be seen as an isolated tragic situation, but
it stands as a symbol for the challenges surrounding the declaration of death under the
conditions of modern medicine. As to the incertitude of the hour of death, planning one’s own
end of life turns up as a social imperative alongside the technological imperative of medicine.
Many industrialized nations have introduced legislation on advance directives, confirming the
validity of written statements that express choices for medical treatment after decision-
making capacity is lost. In some of them, severely ill patients are granted the right to ask for a
medical prescription of a lethal drug for self-administration. In a few of them, this right
includes the administration of a drug by a physician, with the intention of inducing death. For
these procedures the metaphor of assisted dying has been coined, opening a semantic
battlefield about what “assistance” actually entails. More importantly, it suddenly brought
into the light those healthcare professionals who actually care for patients making these
requests and who are also skilled enough to perform the procedures related to assisted dying.

How far should healthcare professionals’ obligations go? And how do they relate to the
foundational moral values of their professions? Besides the variety of practices, it soon
became obvious that there is also a variety of normative values supporting or rejecting these
practices and that it is impossible to reach a consensus. Where assisted dying became legally
allowed, phenomena of routinization, increased demand, or malpractice have been reported.
Slippery slopes have been acknowledged, not all of them having the same degree of slope and
some of them having viable safeguards such as advance care planning facilitation, access to
effective palliative care services, and low-threshold psychosocial support for patients and
families. Although these developments are undoubtedly mixed blessings, they have led to
significant changes in the decision-making culture. It is informed patients, not professionals,
who are considered the experts in setting the limits to what the healthcare system can offer,
even though such choices may imply a limitation of potentially valuable life experiences.

When taking a global perspective and comparing “assisted” to “non-assisted” deaths, an

objection arises: why should this question be given this importance? Compared with the
actual world population of about 7.5 billion people, about 150 million live in places that allow
practices of assisted dying, while elsewhere respective draft bills are circulating within the
legislative bodies. When public polls on assisted dying are conducted in these countries,
public support of these practices and an increased demand for them is usually shown.
Moreover, there is a considerable cultural bias within the discourse on assisted dying. It is
easily linked to typically “western” debates about autonomy which are relevant only to a
minority of the global population. Additionally, a strong socioeconomic divide is evident
between countries struggling with dying and requesting assistance on one hand, and countries
struggling with living on the other hand, bearing disproportionate burdens of disease and
being immersed in political conflicts and socioeconomic challenges. Even when
acknowledging potential sources of bias due to cultural relativism, the availability of life-
prolonging means or global justice, the claim that patients have a right to participate in health-
related decisions underlines the importance of the question across borders. This right is not
culturally confined. It is confirmed even in contexts where social practices are traditionally
“protective.” Thus, the importance of the question does not lie in the claim of an absolute
value of autonomy, but as Article 5 of the United Nations Educational, Scientific and Cultural
Organization (UNESCO) Declaration of Human Rights and Biomedicine paradigmatically
states, in the respect of “the autonomy of persons to make decisions.” More precisely, to make
decisions that influence one’s own end of life within the healthcare system. The question that
arises then is how healthcare professions should translate their basic values in societies where
truisms about death and dying seem to be inverted, where dying well appears to be a
commodity, no longer sustained by fate, but planned, negotiated and co-produced by patients,
healthcare providers and the societal environment.

What does the “universality” of the need for nursing, professed by the International Council
of Nurses (ICN) code, mean when nurses care for patients who request assistance in dying?
How well are they trained in meeting these patients’ needs, respecting their autonomy and
considering their specific vulnerability? Many attempts to answer this question have been
made by nurses and professional nursing bodies. Research in countries with legislation on
assisted dying shows that nurses play a variety of decisive roles in the context of assisted
dying. But the debate is suffering from a division in “pro” and “contra” camps with the result
that a consensus on values and best practices is far from being reached. Leaving aside the
issue whether such a consensus is necessary for responding effectively to the needs of
patients, the question remains if healthcare professions have a specific voice in this regard.
One traditional answer offered by different medical and nursing associations has been that
assisted dying is “not part” of the profession’s mandate. Is such a parochial answer,
describing what is within the profession’s boundary and what is outside, sensitive enough to
capture the complexity of needs of patients facing death? Actually, a spread of public polls
can be observed and a plethora of draft laws springing up apparently “out of nowhere.”
Individuals not only claim their constitutional rights in planning their lives’ end but they also
expect from healthcare professionals to plan care in advance and to discuss with
them different options at the end of life. Examples include withholding or withdrawing life-
sustaining treatment, palliative sedation in the case of untractable symptoms, voluntary
stopping of eating and drinking, the prescription of a self-administered lethal medication, or
the intentional administration of a lethal drug by a physician.

Nursing bodies are often found to be astonishingly unprepared for raising their voice in the
discussion and for bringing in their professional expertise and evidence in caring for the most
vulnerable of patients. As nurses are regularly at the bedside of patients and families facing
death, they have a voice in this regard, which is linked to the lived experience of caring as
individuals and as a profession for any person who suffers, and among them also for those
who see death not only as a fate, but as a choice. Nevertheless, this voice is disturbingly silent
in the current grand debates, leaving the audience with the task to interpret the “sounds of
silence.”

The reasons for this silence can be easily identified outside of nursing, such as the lack of
political power or a narrow linking of assisted dying to the patient–physician relationship.
Yet, they are also internal to it, feeding the suspicion that the silence may be a late effect of
parochial, inward-looking thinking, banning assisted dying as an issue outside of nursing.
Such a view of assisted dying risks not only to trivialize or ignore the complex needs of
patients facing death. What is worse, it also hinders a deeper understanding of their choices
and their vulnerabilities. As a consequence, it prevents helping them to consider valid
alternatives and to open spaces of authentic moral negotiation. Territorialist thinking ignores
the universality of nursing needs and also interrupts the continuity of care. As the popular
medical writer Atul Gawande says, “Everyone dies. Death is not an inherent failure. Neglect,
however, is.” Neglect can take many forms. It ranges from not wanting to acknowledge
suffering, trivializing the felt loss of dignity, but also failing to question the choices made by
patients in the name of autonomy, or to discuss alternatives. The dilemma of assisted dying
will remain as long as developments in medicine and in decision-making culture will continue
to challenge our truisms about death and dying. The voice of nurses is indispensable for
shaping policies and for defining and evaluating ethically safe practices that assure the right
of patients to make decisions, but also helping to prevent old and new forms of neglect when
they face death.

This issue has become more pressing in the light of planned or enacted legislative changes
surrounding assisted dying in many countries. Emerging public debates require the
engagement of those who are committed to understanding and advocating for the needs of
patients, families and communities regarding end of life care. The voices of nurses need then
to be heard and, given the global changes proposed or enacted as detailed below by members
of the Editorial Board, they need to lead the way in debating ethical aspects of assisted dying.

As Ann Gallagher (United Kingdom) notes, ‘the assisted dying debate in the UK last
attracted public attention in September 2015 when the Assisted Dying Bill was rejected
(see http://www.bbc.co.uk/news/health-34208624). The range of arguments presented for and
against the Bill will be familiar to readers of Nursing Ethics. On the one hand, it was argued
that the Bill would offer an important choice at the end of life for those who are terminally ill.
On the other hand, it was argued that there were insufficient safeguards to protect those who
are vulnerable, elderly or disabled. In the UK, euthanasia is illegal and is considered as
murder or manslaughter. It is also illegal to encourage or assist suicide, which is set out in the
1961 Suicide Act. In 2009, the Royal College of Nursing moved to a neutral stance on
assisted dying (see http://news.bbc.co.uk/1/hi/health/8167454.stm). Given legislative changes
in other countries, it seems most likely that UK law will be challenged again in the not too
distant future. Nurses, and most particularly nursing ethicists, need to take a lead in setting
out the arguments for and against assisted dying and drawing attention to the implications for
nurses, care-recipients, families and communities.’

Chris Gastmans (Belgium-the Netherlands-Luxembourg) observes that ‘the three

neighboring monarchies of the Benelux (Belgium, the Netherlands, and Luxembourg) have
legalized euthanasia. Euthanasia is defined in these acts as intentionally terminating life by
another person than the person concerned, at this person’s request. The Belgian Act is not
applicable to assisted suicide, whereas the Dutch and the Luxembourg Acts regulate assisted
suicide in the same way as euthanasia. The three acts have in common that they reserve
euthanasia to the medical profession as a legal monopoly. Because euthanasia belongs to the
medical sphere, it is mainly the responsibility and involvement of physicians that is
emphasized in the laws. With regard to nurses, the laws only stipulate that the euthanasia
request must be discussed with the nursing team having regular contact with the patient. It is
also stipulated that nurses may not be compelled to assist in practicing euthanasia or assisted
suicide. Empirical studies conducted in Belgium and the Netherlands reveal that nurses are
intensively involved in the care process for patients requesting euthanasia. Belgian and Dutch
hospitals and nursing homes paid explicit attention to the role of nurses in the euthanasia care
process in their written institutional ethics policies on euthanasia. However, many issues
regarding the legal, professional, and ethical responsibilities of nurses in the euthanasia care
process remain unclear.’

Helen Kohlen (Germany) recalls that ‘the Lower House of German Parliament (Bundestag)
has passed a new law in November 2015 on assisted suicide. Before, different proposals were
brought into the political decision-making, putting arguments forward about how to regulate
the last hours of life. The role and nurses’ voices were not brought in. Finally, the majority of
the parliament decided to sanction business-like assisted suicide, defined as a repeated form
of assisted suicide. In spring 2015, the umbrella organization of German nursing
organizations (Deutscher Pflegerat) positioned the nursing profession by publishing a paper
that summarized the pros and cons of assisted suicide. The situation of nurses was described
as one of being confronted with patients who expressed their wish to die, but due to a lack of
resources (qualified personnel, time and education in general), they are most possibly not able
to take good care of the patient, like talking in depth and understanding the needs. Palliative
care was articulated as a competence that nurses should be trained in. Currently, the biggest
challenge is seen in bringing palliative care into nursing homes because of the quantity as
well as the quality of nursing care for the elderly that has been extremely low over years.’

Joan McCarthy (Ireland) confirms that ‘both euthanasia and assisted suicide are illegal
under Irish law. There was little or no debate on the issue of assisted dying in Ireland among
the general public until 2012 when Marie Fleming, a woman in the final stages of multiple
sclerosis, challenged the constitutionality of the prohibition on assisted suicide in an attempt
to ensure that her partner would not be prosecuted if he helped her to end her life. The High
Court dismissed Ms. Fleming’s case on the grounds that a relaxation of the ban on assisted
suicide posed a threat to vulnerable members of society. The position of the courts seems to
be at odds with the views of the general public. A Sunday Times Opinion Poll in October
2014, based on a representative sample of 920 adults, found that the majority (71%)
expressed support for assisted suicide where someone is suffering from a terminal illness. The
Code of Professional Conduct and Ethics for Registered Nurses and Registered Midwives
(2014) makes no reference to assisted dying, assisted suicide or euthanasia while the Irish
Medical Council code (2016) states that doctors ‘must not take part in the deliberate killing of
a patient’. To date, none of the Irish nursing organizations has offered any guidance to nurses
on the matter.’

Douglas Olsen (United States) notes that ‘in the US each state makes its own regulations
regarding assisted suicide. Assisted suicide is legal in six states and specifically outlawed in
38. Oregon was the first state to approve assisted suicide in 1997 and most states where
assisted suicide is legally available model their regulations on Oregon. These require the
patient to have a terminal condition, have decision-making capacity, and be able to administer
the lethal medication unaided by a clinician. As of the end of 2014, 1,327 people in Oregon
received lethal prescriptions and 859 died as a result of taking the prescription. While the
issue remains controversial, 68% of Americans support legal access to lethal prescriptions for
terminally ill persons. Despite the increasing number of Americans with access to assisted
suicide, the American Nurses Association’s position is that nurse participation in assisted
suicide is a direct violation of the ANA Codes of Ethics. The American Medical Association
holds a similar position, while the American Public Health Association allows for assisted
suicide.

Elizabeth Peter (Canada) reports that ‘in Canada, medical assistance in dying (MAID)
became legal with the passing of Bill C-14 in June 2016. The law permits physicians or nurse
practitioners (NPs) to administer a medication to capable adults requesting MAID, or to
prescribe a medication for self-administration that will cause death. Eligible persons must
have a grievous and irremediable medical condition and their natural death must be
reasonably foreseeable. Registered Nurses and Registered Practical Nurses can legally assist
NPs or physicians in providing MAID through the provision of education and nursing care.
The law recognizes the right of all healthcare professionals to refrain from engaging in MAID
through conscientious objection. Given these recent changes, nursing bodies across Canada
are in the process of drafting regulations to guide nurses. Challenges remain, however, in
determining what balance should exist in ensuring access to MAID while preserving the right
to conscientious objection. Many Canadians also believe the law has not gone far enough in
protecting the rights of suffering persons who are not imminently dying, but would like
MAID.’

Martin Woods (Australia and New Zealand) provided the following summary that ‘both in
Australia and New Zealand, widespread debates have occurred in recent years regarding
assisted dying. In both countries, it is argued that there is considerable public support for
PAS, but mixed and often polarized viewpoints amongst health professionals. In Australia,
regardless of many attempts in State, Territory and Commonwealth parliaments to introduce
bills to permit some form of euthanasia, all have been ultimately unsuccessful. In New
Zealand, where euthanasia also remains illegal, there has recently been considerable public
and professional debate, the re-formation of a private member’s Bill (as yet undrawn), a
Parliamentary Inquiry (which is still considering more than 20,000 submissions), and growing
unease between health care professionals. In brief, these professional tensions may be
highlighted by differences between positions. For instance, the New Zealand Medical
Association has long opposed any changes to the law, but the New Zealand Nurses
Organization has been cagey about its position, and in fact has very recently indicated that it
is most likely to support some kind of legislation that would permit assisted dying.’

Finally, I (Settimio Monteverde Switzerland) recall that in Switzerland, assisted suicide is

legally condoned except for selfish reasons. The law does not assign a specific role to
healthcare professionals, but it is evident that they are highly involved in responding to
requests of assisted dying. Although medical and nursing bodies have declared that assisted
dying is “not part” of the profession’s scope, standards of diligence have been formulated in
meeting the patients’ requests. Right-do-die associations accompanying the patient in the last
step of self-administering the lethal drug generally have a broad public support. Most
healthcare institutions have set guidelines regulating the access of these associations.
Nevertheless, uniform standards of care addressing the role of nurses in responding to patients
requesting assistance in dying are lacking, leading to different phenomena within nursing:
They range from undue forms of gatekeeping to perceived moral distress when questioning
the eligibility criteria of patients (e.g. mental illnesses).

Beyond possible cultural differences, these summaries illuminate a striking paradox:

Everywhere, there is high emotional and factual involvement of nurses in caring for patients
who request assistance in dying. In parallel, there is a low consideration and participation of
the nursing profession in shaping policies that are supportive of the autonomy of patients to
make decisions and address at the same the multiple sources of vulnerabilities. Among the
voices that are missing is also the voice of nursing ethicists. What the contribution of nursing
ethics could be in the future will be addressed in a later contribution within this journal.

Reference:

Monteverde, Settimio. (2017). Nursing and Assisted Dying: Understanding the sounds of
silence. Retrieved February 9, 2017 from
https://journals.sagepub.com/doi/full/10.1177/0969733016684967
 Critic Paper

The title of the article we are going to critic is Nursing and Assisted Dying: Understanding the
sounds of silence by Settimio Monteverde. If nurses have Nurses have four fundamental
responsibilities: to promote health, to prevent illness, to restore health and to alleviate suffering,
and culminates in stating that “The need for nursing is universal.” Then why do they still practice
and don’t speak up for euthanasia? How far should healthcare professionals’ obligations go? And
how do they relate to the foundational moral values of their professions?

The major points of the author in this article are, What does the “universality” of the need for
nursing, professed by the International Council of Nurses (ICN) code, mean when nurses care for
patients who request assistance in dying? How well are they trained in meeting these patients’
needs, respecting their autonomy and considering their specific vulnerability? Many attempts to
answer this question have been made by nurses and professional nursing bodies. Research in
countries with legislation on assisted dying shows that nurses play a variety of decisive roles in
the context of assisted dying. Nursing bodies are often found to be astonishingly unprepared for
raising their voice in the discussion and for bringing in their professional expertise and evidence
in caring for the most vulnerable of patients. As nurses are regularly at the bedside of patients
and families facing death, they have a voice in this regard, which is linked to the lived
experience of caring as individuals and as a profession for any person who suffers, and among
them also for those who see death not only as a fate, but as a choice. Nevertheless, this voice is
disturbingly silent in the current grand debates, leaving the audience with the task to interpret the
“sounds of silence.”

The findings of the author about this article is that, the law does not assign a specific role to
healthcare professionals, but it is evident that they are highly involved in responding to requests
of assisted dying. Although medical and nursing bodies have declared that assisted dying is “not
part” of the profession’s scope, standards of diligence have been formulated in meeting the
patients’ requests. Right-do-die associations accompanying the patient in the last step of self-
administering the lethal drug generally have a broad public support. Most healthcare institutions
have set guidelines regulating the access of these associations. Nevertheless, uniform standards
of care addressing the role of nurses in responding to patients requesting assistance in dying are
lacking, leading to different phenomena within nursing: They range from undue forms of
gatekeeping to perceived moral distress when questioning the eligibility criteria of patients
example is the mental illnesses.

The main problem in here is that, health care providers specifically nurses do not have a voice
in this matter, they do not stand for themselves to speak up during the agreement of assisting a
dying person which they may prevent it by helping them to consider valid alternatives and to
open spaces. As public debates emerges, it requires the engagement of those who are committed
to understanding and advocating for the needs of patients, families and communities regarding
end of life care. The voices of nurses need then to be heard and, given the global changes
proposed or enacted as detailed below by members of the Editorial Board, they need to lead the
way in debating ethical aspects of assisted dying (Monteverde, 2017). The author made a
summary about several countries from Europe having one representative to represent each
country as they talk about they observations and perspectives towards legalization or prohibition
of euthanasia in their respective countries. Sadly, two out of the eleven countries prohibits the
legalization of euthanasia and these countries are United Kingdom and Ireland. Because
according to these countries euthanasia is considered as murder or manslaughter and it is also
illegal to encourage or assist suicide, which is set out in the 1961 Suicide Act. While the
remaining nine countries such as Belgium, Netherlands, Luxembourg, Switzerland, United
States, Canada, Germany Australia and New Zealand since these countries have had determined
greater pro’s than con’s towards euthanasia such pro’s like lack of resources for the treatment,
for the ease of the patient and etc. The author should have just made the findings a little shorter
since most of the results from each country were almost the same but overall, the context was
constructed in a logical manner wherein you can easily discern that this information are from
reliable sources. Also, the author does seemed a little biased, since he wants all of the nurses to
speak up about this certain issue although on his style of writing, he looked like he was In a
neutral level in implementing euthanasia. The author was very convincing at some points like
having the nurse to speak up and has provided sufficient, relevant and interesting facts and an
adequate reference.

The author was successful in proving his personal argument since he showed eleven countries
wherein, it should have been better if nurses were able to open their lips to speak and help them
with decision-making not only the patients but also to the government. Because a nurse’s voice
indispensable or important for shaping policies and for defining and evaluating ethically safe
practices that assure the right of patients to make decisions, but also helping to prevent any forms
of neglect when they face death. Because of showing those, it made an impact to us readers that
the world would have been a better place to live if they were able to speak up then they could
have unlegalized the law or had better options that does not promote assisted dying.

This article has touched my soul emotionally and also made me realize that nurses are always
involved at most of the situations happening in the hospital because nurses are the ones who have
the most direct contact with the patient and mostly communicates with other health care
professionals – that is why nurses must always use their cognitive and affective skills in every
aspect. This article is very interesting to read and critic not only because my course is Bachelor
of Science in Nursing but it talks deeper about the consequences of euthanasia and the role of
nurses when this kind of situation happens in front of them