By Jean Echlin, Nurse Consultant - Palliative Care & Gerontology
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.
An excerpt from a monologue in the play "Hamlet" by William Shakespeare
A Sea of Trust?
There is a draconian evil moving aggressively through our culture. It comes in the form of a lethal cult called Compassion & Choices or Death With Dignity. Its leaders and adherents support the cause of euthanasia and assisted suicide which they call "aid-in-dying." Some adherents, who want death on demand, have a strong desire to die at the time of their choosing. However this is a deadly and distorted ideology. Its leaders insist that physicians, nurses or other health care providers prescribe and give lethal injections, provide the gas, or the drugs necessary to kill a person, or give them the means to kill themselves. This may include a plastic "Exit Bag" or simply a plastic garbage bag secured over the face, head and neck in order to dispense with oxygen.
Professional health care relationships with doctors, nurses, patients and family members float on a sea of trust. Asking professional health care providers to kill, or give the means to kill, will destroy this trust relationship. I emphatically believe that we have no right to ask our professional care givers to provide us with death. Neither should our health care providers ever feel obligated to comply with this narcissistic request.
Why do I believe that?
It is against every ethical principle and moral code for healers to intentionally cause the death of their patients. If they do, we in fact should not and could not ever trust them again. How would you know if the person coming into your hospital room with a needle was intent on curing you or killing you?
Currently, thousands of dollars are being collected throughout the U.S. to assist Washington State’s (I-1000) assisted suicide vote that would legalize assisted suicide in the upcoming American election. 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?
What on earth are they thinking?
If you advocate for euthanasia and assisted suicide by voting for decriminalization the following will result. You will have the solid assurance of authorizing the death of you and/or your 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. She is experiencing difficult symptoms related to 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 your mother should call upon an advocate or member of Compassion & Choices or Dying With Dignity, she would likely be encouraged to take their least dignified way out and "die now." An estimated 73% of all assisted suicide deaths in the State of Oregon, where assisted suicide is legal, are facilitated in some manner by the Compassion & Choices lobby group. 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.
Another scenario is your 65 year old father with late stage pancreatic cancer. He has been a very productive, healthy man who has chosen to live as long as he can. He refuses to be labeled "terminal." His medical oncologist has advised the use of palliative chemotherapy that is far less toxic than curative chemotherapy. Your father has received the news that his Health Maintenance Organization (HMO) has denied coverage for the chemotherapy. Instead, they offered to pay for him to obtain assisted suicide. He does not have the financial means to pay for this therapy, which his medical oncologist had indicated would give him an extension of life and better quality of life.
Accepting this offer will deny him the civil right to choose life instead of an assisted death. Does this seem fair or reasonable? What would you do in this situation? Could you afford to pay for his chemotherapy to assist in his self-determination to live longer? The less expensive choice of death is coercion to die that in the end leads to a "duty to die."
This happened to Barbara Wagner (54) in Oregon who 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]
Death is not the appropriate solution to pain and suffering, good palliative care is
If we vote to legalize euthanasia or assisted suicide we are giving away our civil rights; in the United States - life, liberty and the pursuit of happiness and in Canada - life, liberty and the security of person. The prophets of the death cult want us to believe death is the logical answer to pain and suffering. They may even see the infliction of death or the provision of assisted suicide as part of the hospice palliative care mission. They pursue their cause like missionaries and zealots proselytizing their gospel of death. Further, mainline media has picked up their cause and preach like the most persuasive evangelicals.
I believe that those medical professionals and organizations choosing to practice or support euthanasia and/or assisted suicide as "mercy killing" should not be providers of hospice palliative care. In addition, they should not be sitting on governing bodies, advisory councils or committees working on developing standards of practice for palliative care that may include assisted suicide as part of the hospice/palliative care continuum. 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
Derek Humphry is the co-founder of the Hemlock Society. In fact, Humphry’s notion of "self-deliverance" was practiced by him in the death of his first wife, Jean. Following her death, Humphry and his second wife Ann wrote the book Jean’s Way. This started Humphry’s rise to power and prestige in the cult of death. Later he participated, with Ann’s help, in procuring the death of his second wife’s parents ….something Ann would later deeply regret.
When Ann developed cancer, Humphry responded by encouraging her to commit suicide. When she decided to seek treatment, he abandoned her. In her book Deadly Compassion, Rita Marker quotes Ann’s last words to Derek Humphry: "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].
This begs the question, what is misogyny? Does assisted death really have anything to do with love and compassion or is it often a misogynistic act?
Why Discuss Misogyny?
In our culture misogyny still exists. It would be wise to re-assess the history of misogyny in relation to the advocacy of assisted suicide and euthanasia. If these actions become permissible under the law, women will experience a jolt of reality. Historically, women have been vulnerable to male authority in politics, law, government, religion and medicine. According to Jack Holland in his book entitled Misogyny: The World’s Oldest Prejudice, he reminds us that even in ancient mythology there is much evidence of negative attitudes towards women.
For example, "Zeus created an ‘evil being’ for man’s delight." She was called "Pandora," who was told not to open the box she carried. Disregarding this order, Pandora opened the box, thus releasing every aspect of evil into the world, including sickness, death and old age.
Current misogynistic attitudes exist in all cultures; some worse than others. There are many countries where genital mutilation of girls is carried out. Huge atrocities in trafficking girls and women for prostitution are taking place world-wide. Pornography is a women-children oriented criminal activity occurring in all countries. Because of this on-going unequal status, women are still blamed for all kinds of evil. This places women more at risk than men in our culture of death.
Researchers Malphurs and Cohen published their findings in, "A Statewide Case-Control Study of Spousal Homicide-Suicide in Older Persons." Their study looked at twenty cases of homicide-suicide conducted over a two year period in the state of Florida. Malphurs and Cohen had no interest in euthanasia or assisted suicide and confined their research to mental health studies around issues of suicide and homicide. Their study was published in the American Journal of Geriatric Psychiatry (March 2005).
Their findings illustrated 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, their study points out that 65% of homicide-suicide perpetrators and 80% of suicides where a man committed suicide alone were men who were depressed before their deaths. All the perpetrators in this study were men who were described as dominating, controlling individuals. Their research points out that "depression" is prominent in persons of all ages who commit suicide. Their research also points out that most often the perpetrator is the husband and the victim is the wife.
How often do the media report that: ‘a sad, compassionate husband killed his partner as an ‘act of compassion?’ The poor man could not stand to see his partner suffering. Consequently the overdose of medications or a gunshot to the head was deemed necessary to cause the death of the partner. On the other hand, the death of the partner may also relieve the suffering of the perpetrator.
The cases of Robert Latimer in Saskatchewan and Terri Schiavo in Florida also follow a similar story line and serve as a warning to us all.
What about the State of Oregon?
The data collected in Oregon reveal the harmful consequences for patients. The Oregon "Death with Dignity Act" took effect in 1997. According to researchers Hendin and Foley ["Physician-assisted suicide in Oregon: a medial perspective" see www.michiganlawreview.org/archives/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 the largest newspaper in Oregon, The Oregonian, opposes the I-1000 initiative to legalize assisted suicide in Washington State. To quote the Oregonian Editorial Board: "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."
The Board also objects to the lack of transparency in the Oregon experience. They stated: "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. The Oregon "Death with Dignity Act" protects doctors much more than patients.
Of interest are the Dutch government reports about euthanasia and physician assisted suicide (available on the internet www.internationaltaskforce.org/fctholl.htm). The Dutch Reports (Remmelink Reports) that were published in 1990, 1995, 2001 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. There were approximately 100 assisted suicide deaths, and approximately 9,685 deaths related to terminal sedation. There were also 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. Many people oppose the use of euthanasia for mental disabilities simply because these people may be cognitively impaired and unable to understand the consequences of their decisions.
Doctors continue to determine who will live and who will die. Euthanasia is truly out of control in the Netherlands, thus the word "obscenity" in dying comes to mind. Should patients fear going into acute care or long term care institutions? This fear is borne out in the Netherlands where some people carry a card stating their wish not to be euthanized.
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 in fact increased.
This is unconscionable in terms of medical practice. Palliative care should be available and used as the compassionate means to care without killing. The Dutch experience is a predictor of what will happen if assisted suicide and euthanasia are introduced into law.
It is noted by Alex Schadenberg, chair of the Euthanasia Prevention Coalition (International), that the decreased incidents of active euthanasia were replaced by the incredible increase in deaths by terminal sedation in the Netherlands.
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 very 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.
After reviewing current research it is evident that "palliative sedation" and "terminal sedation" need to be clearly defined and differentiated.
What is terminal?
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 it’s 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.
What is Hospice Palliative Care?
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, raikki, 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.
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.
Hospice Palliative Care – The Great Hope
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.
The "death squad mentality" has no place in our health care systems
Doctors and nurses should never be killers. I can only hope there are very few who would consent to provide euthanasia and assisted suicide, but we do not know how many doctors and nurses would provide death if given the opportunity. 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]
The legalization of euthanasia would remove an individual 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, such as no compassion for the pain and suffering of others. These people may often take the law and the lives of others into their own hands. The reality is that individual patients will lose autonomy in the name of autonomy.
Have we learned from the past?
The era prior to Hitler’s reign of horror, should haunt our thinking. Do we want the responsibility of repeating a violation of humanity by our egotistical need to control the time of our death? The doctors in Germany who experimented with various methods of killing people with disabilities (mental or physical) under the eugenic ideology are going to be replaced in history with doctors and nurses of today who are willing to take part in the deadly type of evil called euthanasia and assisted suicide. Professionals who opt to provide death, will be changed…even hardened in their "psyches" treating life and death as meaningless.
A Voice of Experience
With 29 years experience 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.
Euthanasia treats people as disposable objects. Everyone should be concerned…. even frightened 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 move in the direction of legalizing assisted suicide and euthanasia will eventually herald the holocaust of this millennium
Are you really willing to leave this appalling legacy for the next generation?
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.