To die, to sleep;
To sleep, perchance to dream. Ay, there’s the rub,
For in that sleep of death what dreams may come,
When we have shuffled off this mortal coil,
Must give us pause ….
– William Shakespeare's Hamlet
Death With Dignity or Obscenity?
By Jean Echlin, Nurse Consultant - Palliative Care & Gerontology
Part One
A Real Danger
A deadly and distorted ideology is aggressively seeking to take hold in our culture. It calls
itself Compassion & Choices or Death With Dignity or other similar names. Its leaders
and adherents support and promote euthanasia and assisted suicide, which they call “aid-in-dying.” This movement's leaders insist that physicians, nurses or other health care providers
prescribe and give lethal injections, or the gas, or the drugs necessary to kill a person, or for
persons to kill themselves.
A Relationship of Trust?
Professional health care relationships – among doctors,
nurses, patients and family members – are based on trust.
Asking professional health care providers to kill, or give
the means to kill, will destroy this trust relationship. We
should never ask our professional care givers to provide us
with the means of our death. Neither should our health care
providers ever feel bound to comply with this request.
The movement for legalization in Washington State
Currently, several million dollars are being collected
throughout the U.S. to assist proponents of I-1000 that
would legalize assisted suicide in Washington State.
Unfortunately, many people in our culture have very little
understanding of what this will mean in their future, in the
future of their parents and the future of their children. Why
are these dollars not being used to promote good pain
management and excellence in end-of-life care?
By voting for the legalization of euthanasia and
assisted suicide, you will help to authorize, potentially, the
death of yourself and/or family members regardless of age
or ability to consent.
Take, for example, your 78 year-old mother who has
been devastated and feels very depressed following the
death of her spouse of more than 50 years. In addition, she
has a treatable but possibly late stage illness. How will you
respond? Is it not in your mother’s best interest to get
counseling in an attempt to treat her depression? If she
were to call upon an advocate of Compassion & Choices or Dying With Dignity, she would likely be encouraged to
take the quick and easy way out. An estimated 73% of all
assisted suicide deaths in the State of Oregon, the only
American state where assisted suicide is legal, are
facilitated in some manner by Compassion & Choices.
When the “Right to Die” lobby and the end-of-life
decision-maker are the same people, there is no protection
for your vulnerable mother.
Consider the real-life situation of a 54-year-old Oregon
woman named Barbara Wagner. She was denied effective
treatment for lung cancer but offered assisted suicide by
the Oregon Department of Health. [see “Death drugs cause
uproar in Oregon” August 6, 2008;
http://abcnews.go.com]
What would you do in this situation? Could you afford
to pay for the chemotherapy to assist her self-determination
to live longer?
It is easy to see that legal assisted suicide can quickly
become coercion to die and “duty to die.”
Death is not the appropriate solution to pain and
suffering; good palliative care is
The disciples of the cult of euthanasia and assisted
suicide would have society believe that the logical solution
for pain and suffering is death. They may even see the
infliction of death or the provision of assisted suicide as
part of hospice palliative care. They pursue with
missionary zeal their gospel of death. Further, they often
succeed in getting mainstream media to support their
cause.
Those medical professionals and organizations who
practice or support euthanasia and assisted suicide as
“mercy killing” should not be involved in hospice
palliative care. In addition, they should not sit on
governing bodies, advisory councils, or committees that
develop standards of practice for palliative care. This may
mean that parallel programs not inclusive of assisted
suicide and euthanasia may need to be developed.
Who is at risk?
If the law is changed to allow euthanasia and assisted
suicide, those at highest risk will be:
• Older women (55 and above) or elderly fragile men
• Individuals with physical or mental disabilities
• Partners in scenarios of domestic violence
• Babies and children born with disabilities and birth
anomalies
• Persons who are poor and disenfranchised
• Members of minority groups
Jean’s Way
Derek Humphry, co-founder of the Hemlock Society,
put his notion of “self-deliverance” into practice in the
death of his first wife, Jean. He and second wife Ann wrote Jean’s Way, the book that helped him rise to power and
prestige in the cult of death. Later, he participated, with
Ann’s help, in procuring the death of Ann’s parents –
something she came to bitterly regret.
When Ann developed cancer, Derek responded by
encouraging her to end her life. When she decided to seek
treatment, he left her. But eventually she took her life.
Her last words to Derek include the following: “What
you did – desertion and abandonment and subsequent
harassment of a dying woman – is so unspeakable there
are no words to describe the horror of it.” [excerpt from
Ann Humphry’s suicide note, quoted in Deadly
Compassion, by Rita Marker].
This leads to the question, does assisted death really
have anything to do with love and compassion or is it often
a misogynistic act?
Why Discuss Misogyny?
Historically, women have been vulnerable to male
authority in politics, law, government, religion and
medicine.
Researchers Malphurs and Cohen published their
findings in, “A Statewide Case-Control Study of Spousal
Homicide-Suicide in Older Persons.” They studied twenty
cases of homicide-suicide conducted over a two year
period in the state of Florida. Their interest was not in
euthanasia or assisted suicide, but mental health issues
around suicide and homicide. Their study was published in
the American Journal of Geriatric Psychiatry (March
2005).
They found that 25% of homicide-suicide perpetrators
had a history of domestic violence. In the study, all of the
perpetrators were men and 40% were care givers for their
wives. Furthermore, they noted that 65% of homicide-suicide perpetrators and 80% of suicides where a man
committed suicide alone were men who were depressed.
All the perpetrators in this study were men who were
described as dominating, controlling individuals. The
research points out that “depression” is prominent in
persons of all ages who commit suicide. It also points out
that most often the husband is the perpetrator and the wife
is the victim.
The cases of Tracy Latimer in Saskatchewan and Terri
Schiavo in Florida follow a similar story line.
The State of Oregon
The Oregon Death with Dignity Act took effect in
1997. Data collected in that state reveal the flaws in the
legislation. According to researchers Hendin and Foley
[“Physician-assisted suicide in Oregon: a medial
perspective” see www.michiganlawreview.org/
rchives/106/8/hendinfoley.pdf], safeguards for the care and
protection of terminally ill patients under this law are being
circumvented. One of the key problems seems to be the
lack of appropriate data collected by the Oregon Public
Health Division (OPHD) who are charged with monitoring
the law. This organization failed to “ensure that palliative
care alternatives to physician assisted suicide (PAS) are
made available to patients” and they also failed to protect
vulnerable patients by not ensuring that the safeguards are
upheld.
This study further points out that “the unintended
consequences of (a single criterion of 6 months or less to
live) is that it enables physicians to assist with suicide
without inquiring into the source of the medical,
psychological, social and existential concerns that usually
underlie the requests for assisted suicide, even though this
type of inquiry produces the kind of discussion that often
leads to relief for patients and makes assisted suicide seem
unnecessary.”
The Editorial Board for Oregon's largest newspaper, The Oregonian, opposes Washington state's I-1000 initiative. They wrote, “Don’t go there! We won’t be
endorsing it. Our fundamental objection is the same as it's
always been – that it’s wrong to use physicians and
pharmacists to hasten patients’ deaths.”
They also point to lack of transparency in the Oregon
experience: “Oregon’s physician-assisted suicide program
has not been sufficiently transparent. Essentially, a coterie
of insiders run the program, with a handful of doctors and
others deciding what the public may know. We're aware of
no substantiated abuses, but we'd feel more confident with
more sunlight on the program.”
Physicians are not required to be knowledgeable about
the relief of physical and emotional pain and suffering.
This situation is shocking and should be unacceptable
under the law. Oregon's Death with Dignity Act protects
doctors much more than patients.
The Netherlands
Of interest are the Dutch government reports
(Remmelink Reports) about euthanasia and physician
assisted suicide (available on the internet www.internationaltaskforce.org/fctholl.htm ). The 1990,
1995, and 2001 reports are horrifying. In addition, a study
published in the New England Journal of Medicine (May
2007) entitled: “End-of-life Practices in the Netherlands
under the Euthanasia Act” states: “in 2005 there were
• 2,325 euthanasia deaths;
• approximately 100 assisted suicide deaths, and
• approximately 9,685 deaths related to terminal
sedation.
• 550 deaths without request that were reported”.
In the previous Dutch Reports these deaths without
permission or request were in the range of 1,000 persons
per year. These deaths are often imposed by physicians
without the knowledge of the patient or family.
The numbers in the Dutch studies do not include the
euthanasia deaths of handicapped infants and children or
children up to the age of 12 with life-threatening illnesses.
This takes place under the recent Groningen protocol.
The studies do include patients with mental
health/psychiatric problems. Such persons may be
cognitively impaired and unable to understand the
consequences of their decisions.
Earlier Dutch reports indicated that doctors
deliberately killed approximately 11,800 people each year
by euthanasia, assisted suicide, or other intentional actions
or explicit omissions. The most recent reports would
indicate that these numbers have increased.
As noted by Alex Schadenberg, chair of the Euthanasia Prevention Coalition (International), the
decreased incidence of active euthanasia is directly related
to the incredible increase in deaths by terminal sedation in
the Netherlands.
Euthanasia is out of control in the Netherlands. People
have good reason to be afraid of going into acute care or
long-term care institutions. Some people carry a card
stating their wish not to be euthanized.
This is unconscionable in terms of medical practice.
The word “obscenity” in dying comes to mind.
The “death squad mentality” has no place in our
health care systems
The legalization of euthanasia would remove a
patient’s autonomy and put it into the hands of
professionals with potential control issues; who may be
angry, sadistic and abusive. We have all seen colleagues
both at the bedside and in health care management who
have significant personality flaws, and, lacking compassion
for the pain and suffering of others, feel they can take the
law into their own hands.
Have we learned from the past?
The doctors in Nazi-led Germany who experimented
with various methods of killing people with disabilities
(mental or physical) under the eugenic ideology will be
replaced by doctors and nurses who are willing to take part
in the deadly evil called euthanasia and assisted suicide.
Everyone should be concerned by the possibilities of
euthanasia and assisted suicide changing the value and
dignity that is attributed to the dying, chronically ill and
people with disabilities. This is especially true in health
care systems facing financial and resource cutbacks where
death may be seen as more fiscally efficacious than life.
A 1998 study from Georgetown University’s Center
for Clinical Bioethics found a strong link between cost-cutting pressures on physicians and their willingness to
prescribe lethal drugs to patients – were it legal to do so.
[Sulmasy, Daniel R. et al. “Physician resource use and
willingness to participate in assisted suicide”, Archive of
Internal Medicine, vol. 158, May 11, 1998]
Doctors and nurses should never be killers.
Are you really willing to leave this appalling legacy
for the next generation?
Part Two
Real Hope for the Dying
Hospice Palliative Care is the provision of pain and symptom management for individuals
experiencing life-threatening, life-limiting, progressive, or terminal disease. The
cornerstone of excellence in this newer health care reform is the management of pain
and other distressing symptoms. A person in pain is unable to focus on anything except their
need for pain relief. Having to cry or plead for pain or anxiety medication leaves the patient
feeling degraded demoralized and dehumanized. In cases like these their desperation is often
distressing enough to make them wish for death. Individuals have the right to appropriate pain
and symptom management.
In addition, palliative care focuses on emotional, social
and existential suffering. This care may be combined with
therapies aimed at reducing or curing the illness or it may
be the total focus of care. Grief and bereavement follow-up
may be a part of this caring process.
Many therapeutic modes exist to help with the pain
experience. These include, but are not limited to, the use of
narcotics, nerve blocks, surgery, radiation, chemotherapy,
guided imagery and relaxation techniques, therapeutic
touch, reiki, hypnosis, music and art therapy.
Programs of hospice palliative care take a multi-disciplinary team approach utilizing the skills of doctors,
nurses, chaplains, social workers and physiotherapists,
with the added benefit of trained volunteers.
Including these in the care of patient and family can
provide enough quality end-of-life support to eliminate the
desire for a premature death caused by euthanasia or
assisted suicide. For the infrequent situations where pain
and anxiety may appear unmanageable, “palliative
sedation” may be considered. This is not euthanasia. It is
good palliative care. The intention is to relieve pain and
suffering, not to hasten death.
Palliative Sedation or Terminal Sedation?
It is important to note that there is a difference between
“palliative sedation” and “terminal sedation.”
Unfortunately the literature does not recognize this.
Palliative sedation is medication given to relieve the
distress of a terminally ill patient in their last hours or days
when other methods of pain management have failed the
patient. This only happens in a low percentage of patients
– approximately 2 to 5 percent who have a pain
escalation/surge at the very end of life. According to the Journal of Hospice and Palliative Nursing,
(2006;8(6):320-327) in the article: “The Process of
Palliative Sedation” four criteria should be present:
· Symptoms that are unbearable and unmanageable
· A current do not resuscitate order (DNR) must be in
effect
· A terminal diagnosis
· Death must be imminent within hours to days
It would be helpful to have a separate consent for
palliative sedation. This would avoid any confusion around
treatment plans. The intent of palliative sedation is to
provide pain and symptom relief and not to hasten death.
On the other hand, “terminal sedation” as it is
practiced in the Netherlands appears to be sedation
followed by dehydration with the explicit intention of
causing death.
One of the most significant findings in current
literature indicates that the use of opiates (morphine,
hydromorphone, fentanyl, etc.) when properly titrated
according to the patient’s pain intensity, do not hasten
death. Also, this is one reason narcotics are not the drugs
of choice for euthanasia or assisted suicide.
What does "terminal" mean?
One of the most difficult clinical assessments is the
determination of when a human being is actually
“terminal.” A disease can be labeled terminal at diagnosis,
as in terminal cancer. This does not mean that a person is
imminently dying. In fact, the life span may be anywhere
from months to years. It is often difficult for the most
astute diagnostician to predict the actual end stage or
terminal stage of disease. This is true of the major
categories of disease such as cardiovascular, neurological,
cancer, renal failure, diabetes etc.
How dare we assume that a diagnosis of a life-threatening illness means that a person is “terminal?” One
significant lesson learned from the bedside of a patient of
mine is: “Do not let anyone label me “terminal.” I will tell
you when it is my time. Give me a measure of hope and
speak to my living!” These were the words spoken by a 38
year old man who desperately wanted to live.
Individuals facing life-threatening disease are usually
depressed. Depression is treatable even in late stage
disease. Thus, euthanasia and assisted suicide represent a
threat to people both needing medical and psychological
support for clinical depression.
Hospice Palliative Care – The Great Hope
Everybody needs to have access to quality end-of-life
care through hospice palliative care programs. Further,
medical practitioners, nurses, pharmacists and other
members of the health care team should keep informed of
newer methods of pain and symptom management. This
should be a mandatory requirement through the various
licensing bodies.
According to Dr. M. Scott Peck in his book, Denial of
the Soul: “Failure to treat pain is medical malpractice…. it
is one of the worst crimes in medicine today.” His words
ring true and he too suffered the pain experience.
Today, there is no excuse for any individual, be they
adult or infant, to experience an agonizing death. We have
an armamentarium of methods and pharmaceuticals
(medications) to modify physical pain and death anxiety.
Unfortunately, too many of our health care providers,
particularly nurses and doctors, are not effectively trained
in the principles and practices of this newer health care
reform (30 years) called Hospice Palliative Care. Neither
are they educated in the newer methods of pain relief for
acute, chronic and end-stage disease.
A Voice of Experience
In my 29 years as a palliative care nurse consultant, I
have been at the bedside of more than 1,000 dying
individuals. It is my learned experience that persons who
receive timely, appropriate and expert pain and symptom
management, including attention to their significant issues,
do not ask for assisted suicide or euthanasia. According to
Dr. Neil MacDonald in the Oxford Textbook of Palliative
Medicine, proper pain management can actually extend the
life span as patients experience improved quality of life.
Palliative care is a life-giving therapy, not a life-limiting
therapy. Dying with dignity can only be achieved with
expert hospice palliative care. This is the compassionate
choice and should be available for every individual in
Canada and the United States, throughout their life span.
Expert hospice palliative care requires a commitment of
health care dollars, strong community and institutional and
home health care and compassionate support for vulnerable
people.
Jean Echlin, R.N., M.S.N., is a pioneer in Hospice
Palliative Care. In 2004, the Ontario Palliative Care
Association (OPCA) recognized her 26 year contribution
to hospice palliative care by selecting her for the
prestigious “Dorothy Ley Award of Excellence” for her
part in “fostering the true spirit of Palliative Care in
Ontario.” Echlin formerly served on faculty, University of
Windsor’s Faculty of Nursing, and was director of nursing
at Windsor Regional Hospital’s Metropolitan Campus. As
coordinator and clinical nurse specialist, then executive
director, Jean was instrumental in the development of the
Hospice of Windsor & Essex County Inc. which is
recognized as exemplary in Canada. In 1988, Jean moved
to London, Ontario and established the Palliative Care
Consultation Team in the heart of tertiary care at
University Hospital, London Health Sciences Centre. She
is also recognized as a distinguished public speaker,
educator and free-lance writer. Jean is an independent
nurse consultant; formerly vice-president Euthanasia
Prevention Coalition; serves on the Advisory Council of
the deVeber Institute of Bioethics and Social Research; is
a member of the Honour Society of Nursing and member
Emeritus of the Registered Nurses Association of Ontario.
