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Frequently Asked Questions About Assisted Suicide and Euthanasia by Rhonda Wiebe, Co-chair CCD Ending of Life Ethics

Committee and Amy Hasbrouck, Toujours Vivant-Not Dead Yet Q: Arent we making people endure terrible pain and suffering if we dont allow doctors to help them commit suicide? Although physical pain is often given as the main reason for allowing assisted suicide, pain is rarely an important factor when people ask to die. Only 22% of people who ask for assisted suicide in Oregon list pain or the fear of pain as the reason they want to die. In fact, physical pain can almost always be controlled. When people talk about suffering they sometimes mean the grief that comes with any major loss in life, such as losing the ability to walk, or the loss of a spouse or child. With encouragement and support, its possible to pass through this grief to feelings of peace and acceptance. Another kind of suffering has to do with becoming disabled. In Oregon, the reasons people give most often for asking for assisted suicide include: losing the ability to do favorite activities (87%), becoming dependent (90%), feeling like a burden (38%) or fear of losing their dignity because they need help with personal care (84%). Yet with architectural access and consumer-controlled home-based services, people with disabilities can stay active, integrated and in control of their lives. People with disabilities worry that these disability-related reasons have become widely accepted as good enough to allow assisted suicide.

Q:

Whats disability got to do with it? Isnt assisted suicide only for people who are terminally ill? Practically all people with terminal illness (six months or less to live) have disabilities. In every place where assisted suicide is supposed to be only for people who are terminally ill, people who are not terminally ill are routinely helped to die. It is very hard to predict how long someone will live, and doctors sometimes make incorrect diagnoses. We all know someone who has "beat the odds" and lived much longer than doctors expected they would. In fact, reports from Oregon Public Health on that state's death with dignity law show that during every year since the program began, people have outlived the six-month cut-off. Under most assisted suicide laws, people with chronic illness and disability are also eligible for assisted suicide. In places where assisted suicide is legal, standards for who is eligible have grown more and more relaxed. For example, in the Netherlands, people who are old or simply "tired of life" can have a mobile euthanasia unit come to their

home. And recently in Belgium, two deaf men were given euthanasia because they were losing their sight, and believed that being deaf/blind would be worse than dying. People with disabilities are in a high-risk category because minor problems can and often do become life-threatening. In the hospital, people with disabilities are often badgered to sign Do not resuscitate orders or encouraged to refuse treatment. Nearly all end-of-life care issues such as access to good health care and pain relief, in-home personal care, peer counseling, and family supports have been disability rights issues for decades.

Q. Arent there safeguards in place? Many safeguards have been suggested and tried. In general, there is not enough oversight before the person dies, and almost no oversight after the person dies. Typical safeguards include: 1. Voluntary request Requests for assisted suicide are supposed to be made free of influence. Discrimination and barriers, rather than the persons disability, can create the conditions that lead someone to make a request because they lack the services and supports necessary to be integrated and productive members of their community. The person may face pressure because of economic hardship or family stress. Comments from family, friends or medical staff may lead someone to feel they are a burden, are less valuable because of their illness or disability, or that theyd be better off dead. Disputes over an inheritance can lead to family members putting direct or indirect pressure on someone to choose death. People with disabilities and elders suffer very high rates of abuse both at home and in institutions. Undue influence and coercion usually happen behind closed doors and are hard to detect. Most people are too embarrassed to report abuse, or the abuser is the only caregiver, so reporting abuse would risk being put in a nursing home. Many people who ask to die have depression or other mental health issues that interfere with their ability to make clear choices. When these conditions are treated, people often change their minds and want to live. Many disabling conditions cause cognitive problems that make it impossible for a person to make an informed choice. Suicidal feelings are treated as legal evidence that a non-disabled person is a

2. Assisted suicide is only supposed to be available to competent adults.

danger to himself, and can be committed to a psychiatric hospital against his will. This standard does not seem to be used with disabled people who ask to die. This creates another form of discrimination. Deciding if someone is competent is not the same as knowing if they are depressed and treating them for it. Many people with depression dont appear depressed to someone who doesnt have any experience in treating depression. The standard for competence who judges and what are the criteria varies from one place to another. The process and standards may not reflect the seriousness of the life-or-death decision the person is making. Most assisted suicide and euthanasia programs do not require an screening by a mental health professional to detect and treat depression or other causes of suicidal feelings. Some places allow teenagers to be given assisted suicide and euthanasia, and parents can authorize it on behalf of their children. Information about prognosis and options given by doctors is often biased because of prejudice about the quality of life with a disability. Providing information about alternatives to assisted suicide or euthanasia is not the same as making sure the person gets the necessary services to make those options a reality. Few laws require doctors to tell the person about home care to help with activities of daily living like dressing, bathing, transfers and using the toilet. Information is rarely made available in accessible formats or by unbiased interpreters. No laws require that the person asking to die talk to people living happily with that disability. Theres no requirement that the person have a long-term relationship with the doctor. If the doctor says no, the person or their family can find another doctor until they find one who will say yes. This is called doctor shopping. Family doctors are not trained to detect mental illness or cognitive problems that could interfere with a clear and informed choice. Doctors may not know enough about the persons living situation or be able to detect abuse. Doctors dont usually know about community supports and services that can help people live independently, or even much about palliative care. Doctors face pressure to cut costs.

3. The person is supposed to provide informed, written consent.

4. Assisted suicide must be prescribed by a physician

5. The request for assisted suicide must be approved by a second doctor When a doctor asks another doctor to consult, he will often ask someone he knows will agree with him. The second opinion is based only on a short visit and the notes of the first doctor. This is not enough information to make a life-and-death judgment. The second doctor is probably also not trained to detect mental illness or abuse. These are not usually required. Mental health workers have the same prejudices and biases about life with a disability as medical doctors. The opinion is based only on a short visit and the notes and opinions of the referring doctor. The psychologist or psychiatrist doesnt have enough information to make a clear and complete decision Mental Health professionals dont know about community supports and services that can help people live independently. In Oregon, doctors rarely ask for a psychological consultation (only 3% in 2008 and only once in 2011) to check for mental health problems that might cause suicidal feelings. Nor do they consult with a social worker who could help put home- and community-based services or peer counseling in place to deal with these feelings. No witness is required when the drugs are taken. Theres no way to ensure that its voluntary. If something goes wrong, theres no way to help the person. A lethal dose of drugs may sit around the house for weeks or months. Doctors sometimes leave it to other staff, like nurses or attendants, to perform the euthanasia, or these staff take it upon themselves. Doctors are trained to heal, not kill. Many doctors will not want to perform euthanasia, and people who want the service will have to go to a doctor they dont know. If euthanasia is performed by doctors in hospitals, people may be not want to go to the hospital for care, fearing they might be killed. Some laws require that family members be informed, some do not. Sometimes its important to tell family members, so they can provide support or

6. Psychological evaluation

7. When the method is self-Administration

8. When the method is euthanasia

9. Informing family members.

help the person to avoid suicide. Sometimes its can cause problems to tell family members, if the family is threatening or abusing the person who wants to die to avoid the risk that what may look like an assisted suicide is actually a homicide. Even when the law requires doctors to report assisted suicides or euthanasia, they dont always do so. o If they didnt follow the correct procedure. o If they dont consider it an assisted suicide or euthanasia under the law. o If something went wrong. o Any other reason There are rarely penalties for doctors who dont report assisted suicides or euthanasia. Even when there are, doctors are not punished. Assisted suicide and euthanasia cannot be counted if theyre not reported. Assisted suicides may not be counted as suicides, as in Oregon. Doctors wont report when nurses and other medical staff euthanize some or help them commit suicide. Government agencies may not have power or funds to investigate problems or abuses. Agencies or professional associations who work closely with doctors may have a conflict of interest and not want to investigate. After a person is dead, there is rarely anyone who will come forward to say there was a problem. The standard of proof that a doctor acted properly may be very low.

10. Reporting of assisted suicides / sanctions

11. Investigations / prosecutions

The very fact that people consider adopting assisted suicide or euthanasia means that the lives of the people who ask to die are considered less important than others who are prevented from killing themselves. When governments adopt such laws, they endorse this devaluation and discrimination. People with and without disabilities should get the same kind of suicide prevention services. Two studies (by the National Council on Disability and the Council of Canadians with Disabilities) have shown that the safeguards necessary would make the procedure so onerous as to render the law unworkable. There is a bright line in the law now; people have the right to refuse life-sustaining treatment but not the right to demand lethal measures. If you take that bright line away, its much harder to stop and go back.

Social inequality and discrimination against people with disabilities make all safeguards ineffective. The only real safeguard would be true equality, which does not exist and isnt likely to happen soon. The people who are most vulnerable under these laws elders and people with disabilities suffer much higher rates of abuse than the general public. This law would make it possible for family or friends (including heirs) to pressure, trick or even force someone to accept assisted suicide. Interested parties can help make the assisted suicide request, witness the signature of the form, pick up the prescription and administer the lethal dose. Q. Jurisdictions have legalized assisted suicide have not have any problems. Why shouldnt we just follow those models? An Irish appeals court did not agree. In a January, 2013 decision, that court looked at the same evidence used by the BC court in the Carter case, studies and found that there was proof that elders and people with disabilities are at risk of abuse under euthanasia and assisted suicide laws. The Canadian Medical Association Journal (CMAJ) published an article June 15, 2010 (CMAJ June 15, 2010, vol. 182 no. 9 895-901). It looked at physicianassisted deaths under the euthanasia law in Belgium: a population-based survey. The results are as follows: o Of the 208 deaths involving physician assisted death, some 66 were without an explicit request o Of those 66 deaths; the decision was not discussed with 77.9% of those patients. In other jurisdictions where assisted suicide and euthanasia are legal o Though doctors are supposed to report writing lethal prescriptions or performing euthanasia, theres no way to ensure they do. Data are based only on those who report, and cannot track euthanasia that is not reported. o Problems have been documented in the media, and by studies that track deaths by cause. The data from Oregon and other places that supports physician assisted suicide is unreliable because the facts are hidden and distorted: o Assisted suicide deaths are not listed as suicides, but as due to the underlying illness. o There is no data collected from doctors who refuse requests for assisted suicide (why they refused, what happened to the person afterwards). o Though doctors are supposed to report writing lethal prescriptions, theres no way to ensure they do. o Drugs are not tracked after the prescription is dispensed. o After annual statistical reports are produced, documentation is destroyed,

preventing further analysis. Q: Arent we taking away autonomy and dignity by not allowing assisted suicide? For assisted suicide to happen, a third party must step in and take action on your behalf. (True autonomy would mean committing suicide on your own). Eligibility for assisted suicide is determined by a third party, according to government standards, decided by a doctor. Thats even more interference. The diagnosis and treatment for the underlying illness will be determined both by a doctor, wait times, access to services, and the limits of whatever insurance you have. It can be influenced by many outside factors. In an interdependent society autonomy is an illusion. We are all dependent on the infrastructure for utilities and transportation, the agricultural, manufacturing and shipping industries for food and other necessities, and a health care and social benefit system for our health and welfare.

Q:

Arent people who cannot commit suicide because they are physically incapable denied choices by criminalizing the act of assistance? Anyone is able to commit suicide. If nothing else, they can refuse to eat or drink. Most often when someone asks to die, it is a cry for help. We should help people live, not die

Q.

We euthanize our pets, whats the difference? About 4 million companion animals are euthanized each year, mostly because. They are abandoned. They have personality or behavior problems. They have costly medical conditions. People no longer want to care for them. Theyre old, incontinent or unsightly. They have a terminal illness, or for no reason at all.

Q.

Isnt assisted suicide a personal issue? The public policy of suicide prevention makes this a political issue. Those who are trying to change the current law on assisted suicide are bringing it into the political sphere. The issue has already been debated and decided by parliament, most recently in 2010.

Q.

By allowing assisted suicide, Canada would be saying some people are less worthy of suicide prevention than others.

Isnt this about choice?

In reality, there can be no free choice as long as People dont have access to effective palliative care, Health care is delayed or denied based on economic factors or accessibility, People who dont have home care services are forced into institutions, or have to rely on family so much that they feel like a burden. Anyone could ask for assisted suicide, but its up to the governments standards and the doctors judgment who gets it. People with disabilities face discrimination and lack services and supports to live as equals in the community.

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