DWD Canada Toolkit: Ontario Ministry of Health and Long-Term Care Consultation on Doctor-Assisted Dying Last summer, the Ontario government joined forces with 10 other provincial and territorial governments to create an advisory group of healthcare, legal and ethics experts. The group's task was to look into physician assisted dying (PAD) in-depth and provide recommendations on how it should be implemented. The group released its final report near the end of 2015, after consulting with organizations and individuals nationwide. Dying With Dignity Canada is generally pleased with the group s recommendations and believes they reflect a patient-centred approach to physician assisted dying. The province is currently gathering Ontarians feedback on the report. You can participate in the consultation process in the following ways: Online Survey The online survey is available here: http://www.ipsosresearch.com/endoflifedecisionssurvey/ The last day to complete the survey is January 22, 2016. The approximate time to complete is 15-20 minutes. If you would like help completing your survey, please call the province at 1-866- 477-6753 and leave a message including your contact information. A government representative will call you back to help you complete the survey by phone. Send a Letter After completing the survey, you may wish to share additional thoughts with the Ontario government. You are welcome to send your letters to endoflifedecisions@ontario.ca. Please copy us at consultation@dyingwithdignity.ca as well. Please see below for our toolkit Attend a Town Hall Please see the following link for a list of town hall consultations organized by the Ontario government: http://ipsospasurveys.com/s/endoflifeconsultations/ 1
Ontario Government Online Survey: Key Questions to Consider The provincial government has opened an online survey to better understand the viewpoints of Ontarians on this important matter. We have provided a toolkit to help guide you through the survey. The online survey is anonymous. Dying With Dignity Canada believes that the tone of the online survey is positive. That said, we want to flag a few of the questions and would like you to consider the following questions as you complete the survey. Question: Who do you think should have the final say about whether someone has a grievous and irremediable medical condition that creates enduring suffering that is intolerable to the individual and therefore can participate in physician assisted dying? Background: Under standard medical practice, only the consent of a competent patient is required for which approved healthcare treatments he or she wishes to receive. Physician assisted dying (PAD) should be treated in the same way as other healthcare procedures. DWDC believes that only the patient can determine if his or her suffering is intolerable. The patient should have the final say when it comes to his or her own care. Question: If you could chose, which conditions do you think would make a person eligible for physician-assisted dying if they express consent for this option? 2
Background: The Supreme Court of Canada ruled that competent Canadians with a grievous and irremediable medical condition which causes enduring suffering that is intolerable to the individual will be eligible for PAD. DWDC s view is that the experience of suffering is unique to the individual and could be caused by an illness, disability or disease. A list of specific conditions should not be used as a guideline, as this could be a potential barrier to access for those who are suffering intolerably. Similarly, the Provincial Territorial Expert Advisory Group states that specific medical conditions that qualify as grievous and irremediable should not be delineated in legislation or regulation. Question: Do you think that publicly funded health care institutions in Ontario should be able to object from providing physician-assisted dying because it conflicts with the faith or guiding principles of the institution? Yes No Background: The Provincial-Territorial Expert Advisory Group recommends that faithbased institutions must either allow physician-assisted dying within the institution or make arrangements for the safe and timely transfer of the patient to a non-objecting institution. However, DWDC s view is that all publicly funded institutions must allow physician assisted dying on-site. If there are no doctors on-site who will participate, an external physician should be permitted to come in and assist the patient. In some cases, transferring a patient to a non-objecting institution may inflict unnecessary harm to the patient s health and in addition, may be extremely challenging in remote communities. While the Provincial-Territorial Expert Advisory Group explains that institutions have a responsibility to be upfront about what is and is not permitted within their facility, this does not go far enough. The final report states that all institutions should be required to inform patients/residents of any institutional position on physician-assisted dying, including any and all limits on its provision. However, if a patient is rushed to the 3
emergency room of the nearest hospital and ends up being admitted, it is difficult for that patient to simply relocate to another institution. Although the Provincial-Territorial Expert Advisory Group s view is that all non-faith-based institutions both publicly and privately funded must not prevent PAD from being provided on-site, DWDC s position is that all publicly funded institutions, including those that are faith-based, must allow PAD on their premises. Question: If a patient is eligible and wishes to have physician-assisted dying, in which setting should this be allowed to occur? Background: DWDC believes that a patient should be able to die wherever he or she chooses, whether it be in a hospital, hospice or long-term care facility, or at home in the company of loved ones. We also believe that all institutions that receive public funds should offer, or at least allow, the provision of PAD on-site. Question: This question asks to what extent you agree or disagree with a series of statements regarding assisted dying. The statements are as follows: a) A patient should automatically have to undergo a psychological assessment if he or she requests physician-assisted dying. Background: Mandatory psychological assessments are not required in any jurisdictions that currently allow physician assisted dying. Canadian doctors deal with patients' life-and-death decisions daily (e.g.: I want to stop chemotherapy or I want to be removed from life support ). Physicians routinely consider whether 4
psychological assessments are required to establish consent in these cases. Such assessments will continue when PAD is legal, but should not be mandatory across the board. The Provincial-Territorial Advisory Group s final report acknowledges the physician s ability to judge competency and consent by stating that: Through the relationship [between physician and patient], the physician gains a medical and psychosocial understanding of the patient and the reasons for his or her wishes with respect to health care. This relationship is the basis for assessment of competency, knowledge of the medical condition or conditions affecting the patient, and the impact and natural evolution of potential treatments. The group reaffirms the relationship between physician and patient and the reliability of existing healthcare mechanisms for determining capacity. b) There should be a waiting or cooling off period between when the patient requests physician-assisted dying and when it is performed. Background: The Provincial-Territorial Expert Advisory Group does not recommend mandatory waiting periods. Instead they state that the time between initial request and declaration will vary according to the time it takes for the attending and reviewing physician to be confident that the declaration is free and informed and made by a competent individual. DWDC Canada supports this recommendation. However, if a mandatory waiting period is established, DWDC s view is that it should be no longer than two weeks from when the patient makes the initial request. c) Patients who request physician-assisted dying must have two physicians agree the patient is competent and acting voluntarily. Background: The Provincial-Territorial Expert Advisory Group recommends that two physicians must assess the patient to ensure that all criteria are met. They go on to explain that, to serve patients for sparsely populated areas where accessing a physician is difficult, provinces and territories should enable virtual physician assessments and visits using telemedicine services (or other video-based consultations), or if necessary, transport reviewing physicians to the patient for the second assessment. DWDC supports this recommendation and is especially pleased with the video-based consultation option, as it would help eliminate barriers to access that could occur for those living in remote communities. 5
d) Family and friends should be allowed to be present during physician-assisted dying. Background: Yes, if the patient requests it. e) There should be a formal dispute process if a family member does not agree with a patient s request for physician-assisted dying. Background: This is not necessary because a competent adult patient should have the ultimate say over his or her care. A formal dispute process would suggest that a party other than the patient should have the final say. f) If there is a dispute, the patient requesting physician-assisted dying should win over his/her family. Background: Yes, the patient should always have final say in decisions over his or her own healthcare. As mentioned, DWD Canada does not support the need for a formal dispute process between patients and family members, as it undermines the autonomy of the patient. If you strongly or somewhat agree to a cooling-off period in the above series of questions, you will be asked the following: In the previous question, you agreed that there should be a waiting or cooling off period between when the patient requests physician-assisted dying and when it is performed. In your opinion, approximately how long should the waiting period be? Your choices are: Less than 1 week 1 week 2 weeks 3 weeks 1 month 2 months Between 3 and 6 months Between 6 month and a year More than a year Background: The Provincial-Territorial Expert Advisory Group does not recommend specific waiting periods and states the timelines will vary depending on how long it takes for the two physicians to be sure that the patient is competent, that their request is 6
enduring and that it was made freely and without coercion. DWDC s view is that if a waiting period is established, it should be no longer than two weeks from when the patient first makes the request for aid in dying. Question: In your opinion, should requests for physician-assisted dying be Background: DWDC believes patients should be able to provide requests for a physician assisted death verbally or in writing. People who cannot speak or write must be allowed to express their consent in other ways. For instance, the Provincial-Territorial Advisory Group recommends the following: Where a patient cannot physically write or sign the patient declaration form, an alternative means may be used, such as a video recording. Question: This question asks to what extend you agree or disagree with a number of statements beginning with Doctors/physicians should be required to The statements are as follows: a) Discuss alternatives to physician-assisted dying for someone who requests it. Background: The Provincial-Territorial Expert Advisory Group recommends that, All end-of-life options (including palliative care and physician-assisted dying) should be discussed with patients in a respectful way regardless of the provider s beliefs. While all end-of-life options should be discussed, the patient should have the final say when it comes to his or her healthcare decisions. b) Ask the patient if they have discussed physician-assisted dying with family. Background: DWDC s view is that end-of-life care is the patient s decision and that respect for patient autonomy must be upheld. While a physician may ask if PAD has been discussed, the patient should not be required to have these conversations with family if they do not wish to. 7
c) Discuss the patient s request for physician-assisted dying with their family with the patient s consent. Background: The Provincial-Territorial Expert Advisory Group recommends that if the patient is willing, discussions about end-of-life options, including physician assisted dying, should involve family and caregivers as well. As mentioned, if the patient wants family members involved in the conversation, the physician should comply. However there should be no requirement for family members to be involved in the discussion. Question: What are your concerns about physician-assisted dying being legal? Please list your top 3 concerns. Response options include: Choosing physician-assisted dying because the patient feels like a burden A patient may not actually die (complications etc.) Leaving a mess for family Being forced/coerced/pressured into it Not having access to other alternative care options Social stigma of killing yourself Impact on life insurance Other (specify) I do not have any concerns about physician-assisted dying Background: There are other concerns that you may have that are not listed. You may want to address them when writing your letter to the Ontario government. A few to consider are: Ineffective or obstructionist referral processes Publicly funded institutions not allowing PAD on-site Safeguards that are so stringent they become barriers for people to access a physician assisted death even when they meet the Supreme Court s criteria The prospect of PAD not being accessible in remote regions Vastly different legislation and regulations from province to province Final Question: (The last question of the survey is a text box where you can share any additional comments. Please note that there is a 1,000-character limit.) 8
Ontario Public Consultation Letter-Writing Toolkit After completing the survey, you may wish to share additional thoughts with the Ontario government. You are welcome to send your letters to endoflifedecisions@ontario.ca. Please copy us at consultation@dyingwithdignity.ca as well. Here is an outline we developed to help you to draft a message to the Ontario government. Dear Ontario Ministry of Health, Executive summary (optional) In two of three bullet points, summarize your principle recommendations. Sample starter prompts include: Considerations for best practices and protocols for physician assisted dying should include Although the Provincial-Territorial Advisory Group s Final Report is comprehensive, a few key considerations remain, such as The body of your letter In clear language, tell the Advisory Group what you would like to see included in their recommendations or what recommendations you think the government must follow through with. In your own words, you may wish to highlight the following concerns: 1) Role of publicly funded institutions: DWDC s view is that all institutions that receive public funds should allow PAD onsite and that an external physician should be allowed on the premises to assist a patient if there are no physicians present who will take part. 2) The need for policies mandating effective referrals: The College of Physicians and Surgeons of Ontario has stated that effective, timely referrals must be provided if a physician declines to provide PAD for reasons of conscience or religion. The referral must be made in good faith, to a non-objecting, available, and accessible physician or agency. DWDC agrees with the CPSO s recommendation, as it respects physicians right to conscience while still ensuring timely access for eligible patients. 3) Protection of all healthcare providers: The Provincial-Territorial Expert Advisory Group recommends that the federal government amend the Criminal Code so that all healthcare providers involved in administering of PAD will be protected. Often 9
professionals such as nurses, personal support workers and pharmacists provide a supporting role in a patient s health care, by drawing medications into a syringe, helping a patient take their medication or dispensing prescriptions. As PAD will be a legal end-of life-option, all associated professionals should be protected when involved in this team-based approach to healthcare. 4) Insurance: DWDC s view is that life insurance claims should not be rejected on the grounds that the benefactor received a physician assisted death. In their Final Report, the Provincial-Territorial Expert Advisory Group also recommends that receiving a physician assisted death should not have an impact on a person s life insurance. 5) Loss of competency after a patient request assisted death: In December 2015, the College of Physicians and Surgeons of Ontario released its recommendations for PAD. These guidelines state that if at any time the patient loses the mental capacity to rescind his/her decision, physician assisted death ceases to be an option. This condition is problematic in cases in which a patient who receives approval at all stages of the process but falls into an unexpected coma or other non-responsive state before being able to follow through with their wish to die with the help of a physician. The Ontario Ministry of Health should address this important concern. Other suggestions Use personal experience: If you have a personal story that ties in with your recommendations or comments, please feel free to include it. Did you watch a loved one suffer through a drawn-out terminal illness? Do you fear that you will face a similar fate? Personal stories are a way to express your passion for the cause and give insight into the patient perspective. Include information about your professional qualifications and background, if appropriate: Do you have a background in the healthcare profession? If so, note it. In addition, state how your work has shaped your perspective on end-of-life care. If you don t work in the health field, feel free to state your professional background too. The government is asking for the input from people from all walks of life not just doctors and nurses. Your conclusion Briefly summarize the main points of your letter. In a sentence or short paragraph, reiterate the main points you made in the executive summary. Finish your letter by thanking the Ontario Ministry of Health and Long-Term Care for their consideration. A little kindness goes a long way. 10