Issue Book Paper Version We want to hear your views on physician-assisted dying. Instructions: Simply read and complete this Issue Book and mail it to the address below, post marked by October, 201. Secretariat to the External Panel on Options for a Legislative Response to Carter v. Canada c/o Department of Justice Canada 284 Wellington Street Ottawa, Ontario K1A 0H8 You can also complete this Issue Book online by visiting www.ep-ce.ca/en/consultation

Welcome Welcome to the online consultation on legislative options for physician-assisted dying. We are seeking your input on how assisted suicide and voluntary euthanasia will be implemented by the Government of Canada. This consultation is happening as the result of the Supreme Court of Canada s recent decision in the Carter v. Canada case, where the prohibition against these practices was struck down. We know this is a complex and sensitive issue. For many people, it is a very personal matter that involves deeply held values and beliefs. While this exercise may raise strong emotions and may be difficult, these questions are important as we move forward with a major change in Canadian law. Your participation in this consultation is an opportunity to have a voice in shaping assisted suicide and voluntary euthanasia in Canada. This Issue Book will take you about 2 to 30 minutes to complete. About the Panel Following the Court s ruling, the Government of Canada set up the External Panel on Options for a Legislative Response to Carter v. Canada (the Panel) to engage Canadians and key stakeholders on important issues relating to physicianassisted dying, such as identifying the risks and considering what rules and safeguards could look like. To learn more about the Panel members and their mandate, please visit http://epce.ca/en/the-panel/. Page 1 of 3

While the Panel is not responsible for making decisions on this issue, its task is to gather input and give balanced, thoughtful attention to the range of options for the federal government to consider. Parliament may then use this information to create new federal laws to guide physician-assisted dying in Canada. The provinces, territories and physicians colleges will also have a role in shaping how assisted dying is regulated in their areas. About you To help us better understand and analyze the views and perspectives of Canadians on this issue, please answer the following questions: Q. How old are you? Under 18 4-4 7-84 Q. What is your gender? 18-24 -64 8-94 2-34 6-74 9 or older Male Female Q. Which province or territory do you live in? British Columbia Manitoba New Brunswick Newfoundland and Labrador Yukon Outside of Canada Alberta Ontario Nova Scotia Nunavut Page 2 of 3 Saskatchewan Quebec Prince Edward Island Northwest Territories

Q. Do you have a family doctor? Yes No Q. Approximately how far from your time is the nearest hospital to which you could be admitted for care? Less than 2 km 100 km or more 2-49 km 0-99 km Q. What do you consider to be your primary ethnic / cultural background? White (Caucasian, European) Aboriginal (First Nations, Inuit, Métis) South Asian (East Indian, Pakistani) Other Black (African, Caribbean, American) Asian (Chinese, Japanese, Korean) South or Central American Q. Are you responding as an individual, or from a group perspective? Individual Group Q. If you chose group, what is the group s name? Q. Does faith play an important role in how you consider life-and-death issues? Yes No Page 3 of 3

What are we consulting on? This consultation is about how to implement the Court s ruling in the Carter v. Canada decision. It is not about whether assisted suicide and voluntary euthanasia should be legal. This has already been decided by the Supreme Court. The question now facing the Panel, the Government of Canada, and all Canadians is what rules and safeguards should be put in place to ensure the safe practice of assisted suicide and voluntary euthanasia. We need to set the bar right for who can receive a physician s assistance to die, as well as determine how those requests can be considered carefully and compassionately. We can do this by looking more closely at the eligibility criteria, risks, and safeguards. Why are we consulting on this? In the Carter ruling, the Court struck down the prohibition on physician-assisted dying because it deprives individuals of their rights to life, liberty and security guaranteed in the Canadian Charter of Rights and Freedoms. Current laws will remain in force until February 2016 to give the federal and provincial and territorial governments time to consider how to develop and implement new laws in response to the ruling. While the Court recognized that there are risks involved in the practice of physicianassisted dying, it ruled that a carefully designed system could protect Canadians from abuse or error. Page 4 of 3

The Panel will use your input as it gathers key findings and develops options for the government to consider on how such a system might be created. A little more about you Q. Do you have (Please check all that apply) Disability? Chronic disease (i.e. one that you live with everyday and cannot be cured)? Serious or life-threatening illness? Q. Are you considering / or have you considered asking for assistance to end your life (e.g. from your physician)? Yes No Q. Do you work in any of these occupations / fields? (Please check all that apply) Physician Pharmacist Social worker Other health care professional Religious leader Nurse Mental health professional Care or support worker Lawyer Other Q. If other, please specify: Q. Is there anything else about you, influencing your feelings towards physician assisted dying, that you would like to share with us? Page of 3

Q. Do you have a family member or someone close to you with a (Please check all that apply) Disability? Chronic disease (i.e. one that you live with everyday and cannot be cured)? Serious or life-threatening illness? Our focus: Physician assisted suicide and voluntary euthanasia The Government of Canada needs to consider the implementation of physicianassisted dying, which is when a person seeks and obtains a medical practitioner s help to die. There are two forms of physician-assisted dying: 1. Physician-assisted suicide: This is where patients take the final act to end their own lives, with a medical practitioner providing them with information and the means to do so. For example, they could prescribe a lethal dose of medication that patients then take to die. 2. Voluntary euthanasia: This is where a medical practitioner takes the final act that ends a patient s life, at the patient s request. For example, a medical practitioner could inject the patient with a lethal dose of medication. The Carter ruling has not authorized involuntary euthanasia, which is when the patient does not request or express consent for assistance to die. A few additional definitions We will also be referring to some of the end-of-life care options that are currently available and legal, such as: Palliative care is an approach to improve the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering (World Health Organization). Page 6 of 3

End-of-life options: Right to refuse treatment: for example, a person diagnosed with cancer refusing chemotherapy that may prolong or save their life Right to withdraw treatment: for example, a person who relies on a ventilator to breathe decides to stop using it. An advance health care directive is a document that outlines treatment decisions that a patient has asked to be followed if they become unable to communicate or make decisions themselves (Canadian Virtual Hospice). A health care proxy (also known as a substitute decision-maker) is a person who makes health care decisions on the patient s behalf when the person is unable to communicate (Canadian Virtual Hospice). Who will be eligible for a physician s assistance in dying? The Supreme Court s ruling on Carter outlines specific conditions, or eligibility criteria, for a person to receive physician assistance in dying: A competent adult person who (1) clearly consents and (2) has a grievous and irremediable medical condition that causes enduring suffering that is intolerable to the individual But what does this language mean and how should we interpret it? Eligibility criteria will be needed to ensure that people are protected from harm as a result of abuse or error. The following section illustrates different possible circumstances, and is meant to help you think through who might be eligible for assistance in dying. Page 7 of 3

Scenario 1: Significant life-threatening illness Imagine that you have a serious life-threatening illness. Your doctor has told you that the disease has advanced, and that you likely only have months to live. Despite not having any significant discomfort, you are not interested in going through a long and lingering death. You are considering your end-of-life options. Q. To what extent do you agree or disagree that you (and others in this same scenario) should be able to receive a physician s assistance to die? disagree agree If the situation were a little different, how would you feel? Q. To what extent do you agree or disagree that you (and others in this same scenario) should be able to receive a physician s assistance to die... If: You could live for a few months, although there will be a challenging balance between pain control and side effects. Your condition may extend up to a year or two, although there will be a challenging balance between pain control and side effects. disagree agree Page 8 of 3

Q. To what extent do you agree or disagree that you (and others in this same scenario) should be able to receive a physician s assistance to die... If: Regardless of how much time you may have, you are about being a burden to others, either emotionally or financially. You received this diagnosis at the age of 16 and have a full and complete understanding of your condition and wish to die. disagree agree Scenario 2: Life-altering, but not life-threatening condition Imagine that you have lost both of your legs in a serious accident. While your life expectancy has not changed, your life certainly has. You can no longer do many of the activities you enjoyed before your accident. Life feels bleak, as many of the plans you made now seem impossible. You are now considering your options. Q. To what extent do you agree or disagree that you (and others in this same scenario) should be able to receive a physician s assistance to die? disagree agree Page 9 of 3

If the situation were a little different, how would you feel? Q. To what extent do you agree or disagree that you (and others in this same scenario) should be able to receive a physician s assistance to die... If: Your accident occurred five weeks ago, and you have just begun a long process of rehabilitation at this stage you are not fully aware of the supports that might enable you to live a very good quality of life. Before your accident, you were a high-performance athlete and you now feel that your life has lost meaning. Your accident occurred five years ago and despite receiving excellent supports (for example, a vehicle with hand controls) you are dissatisfied with your quality of life. Your accident occurred five years ago and only minimal supports have been available, leaving you dissatisfied with your quality of life. disagree agree Page 10 of 3

Scenario 3: Progressive condition Imagine that you have just been diagnosed with Alzheimer's. The disease will have a serious impact on your life and will worsen over time. You have discussed your prognosis extensively with your physician, and you have a clear understanding of what lies ahead for you. You are considering options available to you. Q. To what extent do you agree or disagree that you (and others in this same scenario) should be able to receive a physician s assistance to die? disagree agree If the situation were a little different, how would you feel? Q. To what extent do you agree or disagree that you (and others in this same scenario) should be able to receive a physician s assistance to die... If: You have minor memory loss and you cannot bear to think of your future and loss of independence. You now frequently have trouble remembering your family members names, sometimes forget to shut the stove off, and are occasionally found wandering down the street. disagree agree Page 11 of 3

Q. To what extent do you agree or disagree that you (and others in this same scenario) should be able to receive a physician s assistance to die... If: You now have advanced dementia and cannot make decisions on your own. However, just after your diagnosis you wrote an advance directive indicating that you would want to have a physician s assistance to die at this stage of illness. disagree agree Scenario 4: Mental health condition Imagine that you have suffered from a mental health condition for much of your life. Your condition has interfered with your ability to hold down steady work and has put a strain on your relationships. You have tried many treatments, most of which did not help or caused side effects that made you want to quit. You feel frustrated and hopeless about your future. Despite excellent care, you are considering ending your life, but you re afraid to try by yourself in case you don t succeed and make things worse. Q. To what extent do you agree or disagree that you (and others in this same scenario) should be able to receive a physician s assistance to die? disagree agree Page 12 of 3

If the situation were a little different, how would you feel? Q. To what extent do you agree or disagree that you (and others in this same scenario) should be able to receive a physician s assistance to die... If: Your condition has worsened recently, but your physician feels that this can be helped with a change in medications. You ve been in this frame of mind before, and improved. Your condition can vary from month to month, in worse periods leaving you with suicidal thoughts. You are 17 years old, have a full and complete understanding of your condition and wish to die. disagree agree Reflecting on eligibility criteria These scenarios were meant to help you consider and provide input on who should have access to physician-assisted dying. Once it s determined who is eligible, we can start to consider how to minimize the risks involved, which is the focus of the next section. Page 13 of 3

Are there any additional factors related to eligibility for physician-assisted dying that you wish to highlight? If so, please comment below. Risks In its ruling on Carter, the Court recognized that there are risks involved in permitting physician-assisted dying in Canada. This section focuses on the risks for: Patients Persons with disabilities Persons with mental health conditions Palliative care Canadian society We are interested in learning how you are about these risks, both for individuals and Canadian society more broadly. Patients The Government of Canada s response to the Carter ruling must respect the autonomy and dignity of persons who are eligible for assisted dying, while protecting vulnerable people. The Court determined that the object of the prohibition on physician-assisted dying is to protect "the vulnerable from ending their life in times of weakness." Page 14 of 3

Patients must be able to express a free and voluntary decision, without any pressure from society or loved ones. As you think about patient concerns, please consider that: Q. How are you that physician-assisted dying will pose the following risks? Patients will be more likely to request assistance from a physician to die because They feel pressured or influenced by their family / loved ones? They feel they are an emotional burden to their family / loved ones? They feel they are a financial burden to their family / loved ones or to society at large? They feel pressured or influenced by a health care provider? Page 1 of 3

Q. How are you that physician-assisted dying will pose the following risks? Patients will be more likely to request assistance from a physician to die because They feel isolated / lonely or lack emotional support? They are not aware of treatments, technologies or options that might improve their quality of life? They feel their health care provider doesn t understand or provide them with other options that might address their suffering? They are basing their decision on an incorrect or inexact diagnosis / prognosis? Persons with disabilities In considering the possible risks of physician-assisted dying, many people with disabilities have expressed concerns about discrimination and social inequality. Page 16 of 3

As you think about the concerns for persons with disabilities, please consider that: Q. How are you that physician-assisted dying will pose the following risks? Persons with disabilities (and perhaps others) may be more likely to Request assistance from a physician to die because of the suffering that arises from the experience of discrimination, deprivation or stigma? Be influenced to request assistance from a physician to die by a family member or caregiver upon whom they are dependent for support? Page 17 of 3

Q. How are you that physician-assisted dying will pose the following risks? Persons with disabilities (and perhaps others) may be more likely to Request assistance from a physician to die in order to be respected and admired for their sacrifice or bravery, when for much of their lives they have been devalued or ignored? Health care providers Being unfamiliar with other ways to address the difficulties or distress a person with disabilities is experiencing? Being more inclined to see requests for assistance to die from persons with disabilities as reasonable? Page 18 of 3

Persons with mental health conditions There are also risks that have been identified for persons living with mental health conditions. Q. How are you that physician-assisted dying will pose the following risks? A mental health condition could make it more difficult for people to receive a physician s assistance to die? Persons with mental health conditions may Request assistance from a physician to die during an episode that could be temporary? Page 19 of 3

Q. How are you that physician-assisted dying will pose the following risks? Persons with mental health conditions may Request assistance from a physician to die because of suffering / alienation that arises from the experience of discrimination, poverty, violence or stigma? Be influenced by others in positions of authority to request assistance from a physician to die? Have difficulty with the reasoning and judgment required to request a physician s assistance to die? Health care providers May not be able to reliably assess the decision-making capacity of persons with mental health conditions? Page 20 of 3

Q. How are you that physician-assisted dying will pose the following risks? Health care providers May be unfamiliar with ways to address the difficulties or distress a person with mental health conditions is experiencing? Might be less inclined to question requests for assistance to die from persons with mental health conditions? Palliative care Palliative care is focused on improving quality of life by reducing pain and providing comfort and support to persons with serious, life-threatening medical conditions. Improvements to and advances in palliative care continue, but the availability and quality of these services differ across the country. Evidence suggests that certain populations, such as Aboriginal people, dying children, people with physical disabilities and people living in poverty tend to be underserved by palliative care. Page 21 of 3

Q. How are you that physician-assisted dying will pose the following risks? Patients will be more likely to request assistance from a physician to die because they Are not aware of available palliative care services? Do not have access to palliative care services and supports? Health care providers Have not been trained in how to discuss palliative care options with patients? Have not had the education or do not have the skills to provide effective palliative care? Less support / resources for palliative care services across the country when assisted dying might be considered more cost effective? Page 22 of 3

Implications for medical care Assisted suicide and voluntary euthanasia will impact a wide range of healthcare providers who may receive a patient s request to die. In addition to family doctors, other physicians may be involved in these decisions such as geriatricians, oncologists, psychiatrists, neurologists and internists. There are concerns that this could change the way some health care providers define their role and what they do, which some people worry may eventually affect how they serve their patients. Q. How are you that this would change your relationship or level of trust with your doctor? Q. How are you that physicians may not be aware of or do not have access to the resources needed to support patients who are considering ending their lives? Q. How are you that physicians may not be aware of or do not have access to the resources needed to facilitate requests to die from eligible patients? Page 23 of 3

Risks to society While there are potential risks for individuals, let s now consider how the concerns raised about permitting physician-assisted dying could impact Canadian society. Q. How are you about the following issues? Normalizing societal views on assisted dying as an alternative to other ways of addressing suffering? Negative public perceptions around the quality of life and dignity of persons with disabilities, mental health conditions or chronic health conditions? Less public support / fewer resources for accommodating persons with disabilities, mental health conditions or chronic health conditions? A decrease in public confidence in the health care system? Poverty, isolation, or social disadvantage could influence patients decisions to request assisted dying? Page 24 of 3

Q. How are you about the following issues? Assisted dying could become more broadly available (for example, eligibility expanding to other groups, such as mature minors)? Additional risks Q. Are there any additional risks with physician-assisted dying that have not been raised? If so, please describe below. Page 2 of 3

Safeguards Now that we ve explored the potential risks of physician-assisted dying, it s time to consider safeguards. The Court recognized that health risks cannot be completely eliminated, because they are part and parcel of our medical system. However, safeguards can help minimize these risks. This section focuses on the safeguards for: Patients Physicians Canadian society, including our public health care system We want to explore what potential safeguards could be, and to gather your input on what you think should be required. Safeguards for patients Please review and provide your feedback on the following possible safeguards, considering the potential impact of each safeguard. Q. How important do you think it is for the following safeguards to be required by law before a patient may receive assisted dying? Extensive discussion with the patient s physician? important important Page 26 of 3

Q. How important do you think it is for the following safeguards to be required by law before a patient may receive assisted dying? Patients understand and appreciate all palliative and medical care options or supports and services (e.g. psychologist, social worker, pastoral care, medical devices, community support) that might address a patient s suffering? Referral to a medical specialist for a second opinion on the patient s condition, treatment and prognosis? The option of physicianassisted dying can only be discussed if the patient raises it first? A time delay between the diagnosis of condition or injury and when a request can be considered? important important Consider It is possible that sometimes a person s suffering is less directly related to their medical condition and more about not having their support needs met. Consider This could provide patients, who may be vulnerable, time to adjust to a new reality. On the other hand, imposing a delay may seem unfair and arbitrary, since we all experience suffering differently. Page 27 of 3

Q. How important do you think it is for the following safeguards to be required by law before a patient may receive assisted dying? A formal written document, completed by the patient, outlining the request? important important Consider This provides a record and evidence of the decision, not only to ensure that it is within the scope of the law but also to highlight how serious it is. The presence of an impartial individual to witness the signing of the written request? Consider This could help ensure that the request truly reflects the patient s wishes, and not that of anyone else. A repeated number of requests made by the patient? Consider This could help ensure the request is both consistent and considered by the patient. A time delay between requests? A consultation with the patient s family? Consider This could help ensure the request is both consistent and considered by the patient. Consider This could help a physician assess whether the request truly reflects patients wishes and values, and whether they are being influenced by a family member. Page 28 of 3

Q. How important do you think it is for the following safeguards to be required by law before a patient may receive assisted dying? A consultation with a mental health professional? important important Consider This could help assess whether the request is being influenced by a treatable mental illness and how clearly the patient was thinking when they made their request. Requests are evaluated by a group of diverse professionals (e.g. doctors, lawyers, social workers)? Consider This could help reduce the risk of individual bias in determining consent and capacity, and ensure that diverse perspectives are taken into account on behalf of the patient. The presence of a physician to observe the patient taking the lethal medication? Reporting requirements for physicians for assisted dying requests that are granted or denied? Page 29 of 3

Safeguards for physicians Q. How important do you think it is to create an external mechanism or process to establish that the legal requirements for assisted dying are met before a request is granted? Consider This can help shield physicians from criminal responsibility or civil liability and ensure that professionals with the appropriate expertise are making these decisions. at all important important In the Carter ruling, the Court stated that physicians cannot be forced to provide assistance in dying, and have the right to refuse based on their conscience or personal values. However, we need to consider the issue of physician referral. Some physicians who do not want to personally provide assistance may also feel it is wrong to refer to another physician who they know will take this action. Q. Do you agree or disagree that physicians who refuse to provide assisted dying should be required to provide referrals to other physicians who are willing to provide assistance? disagree agree Page 30 of 3

Safeguards for society Now let s consider some broader safeguards for Canadian society, and whether you feel they would have an impact on minimizing the risks associated with physicianassisted dying. Q. How important do you think it is for the following safeguards to be in place? Public awareness / education campaign on end of life options? important important Consider This could help make people aware of their end-of-life options, as well as the rights and responsibilities of both patients and health care providers. Ongoing and mandatory collection, analysis and evaluation of all information pertaining to physicianassisted dying? Consider This could help capture important information, highlight key issues, and enable analysis of social trends or patterns revealing possible impact on vulnerable populations or health care delivery. A national oversight body for physician-assisted dying? Consider This could help determine if policies are being carried out in compliance with regulations, to conduct research for public reporting, and provide evidence for adjusting or refining policies and regulations. Page 31 of 3

Q. How important do you think it is for the following safeguards to be in place? A national strategy on palliative and end-of-life care? important important Consider This could help address inequities, such as lack of access and availability of palliative care options for patients who could benefit from this approach. Education for all health care providers around palliative care? Consider To ensure health care providers are adequately trained to address patient pain and suffering. A comprehensive national home care strategy? Consider To help support people living with disability and advancing chronic illness receive the supports they need to live at home. A national strategy on disability supports? Consider To ensure that appropriate resources are committed to accommodating the needs of people with disabilities, mental illness and chronic health conditions. Page 32 of 3

Additional safeguards Q. Are there any additional safeguards for physician-assisted dying that have not been raised? If so, please describe below. Panel s next steps This consultation is one part of the broader engagement process to inform the federal response to the Carter ruling. The Panel is also consulting with key stakeholders on this issue. The Panel will use all of the findings to develop a final report with options for the Ministers of Justice and Health to consider. This is expected to be completed in the fall of 201. Please visit http://ep-ce.ca/ for more information. Page 33 of 3

Final comments Q. Do you have any final comments or questions to share with the Panel? Page 34 of 3

Evaluation and feedback Thank you very much for your time and input on this very important issue. Please tell us what you thought about this consultation. Q. Do you agree or disagree with the following statements: The information was clearly presented. The information was well balanced between different views on the issue. This consultation helped you learn about the key issues and concerns This consultation provided you with a good opportunity to express your views on this issue. disagree agree Page 3 of 3