Over two years ago, when I began the Spiritual Care Provider (SCP) role with Lisaard and Innisfree Hospice, I knew this position, which involves primarily visiting Local Health Integrated Network (LHIN) palliative clients in the community, would include helping palliative client explore Medical Assistance in Dying, commonly known as MAID. I am aware that many SCPs struggle with how to respond to MAID and whether one should support MAID. Since MAID was now part of the Palliative Care world, I had two choices, either to express my right of conscious objection, and not be involved with MAID, or to find a way to bring the Sacred into the MAID process. I chose the latter and this blog is a summary of my learnings as I help palliative care clients explore the MAID option around death, and then walk with people as I seek to bring prayers of blessing and comfort into their MAID dying process. I have been wanting to write this blog for a while but I have struggled with how to begin this reflection until now. This month I attended a memorial service for one of my clients in my private counselling practice who died of suicide. In processing my experience of that suicide, I realized that this is the place I need to begin when reflecting on MAID. Rethinking Suicide Many people equate MAID with suicide and since suicide has and often is viewed in a negative light by the Christian Church and other major religions, MAID is often seen in a similar way. But as was apparent by the memorial service I attended this past month, not all churches believe this, which I am glad. In the past, people who committed suicide were often buried outside the church cemetery for suicide was seen as sin, maybe the unforgiveable sin by some Christians for they believe there is no opportunity left in their life for the person who "committed" suicide to repent of their choice and thus experience God's forgiveness. When we label suicide as sin, we are essentially saying that the person who is struggling with mental illness and suicide ideation is responsible for their death. Thanks to the growing research and knowledge of mental illness, most mental health professionals no longer see suicide as a choice a person makes. How can it be a choice when the person who dies of suicide believes or feels deeply inside that there is no choice, no hope of any other way to relieve the pain they are going through. Suicide feels like, becomes the only option, they have to release themselves of the pain. As I sat in that memorial service for my client, I knew that this was why they died of suicide. The issues around serious mental illness that leads to suicide are not just rooted in the person who is mentally ill. As a psychotherapist who is trained in trauma, I am very aware that mental illness often has its roots in experiences of trauma, painful experiences in a client’s past that have traumatized their soul creating many forms of coping mechanisms that are often labeled as forms of mental illness. So when I was grieving the loss of my client at the memorial service, I was angry, not at my client, but at the traumas they experienced in life that led to their mental health challenges, traumas beyond their control to avoid. But my anger went beyond these traumas. I felt anger at the mental health system and its failure to help this young adult. There are many limitations found within the mental health system that interfere with its ability to help people who are wrestling with mental illness and suicide ideation. The limitations are many. Sometimes, the limitations involve the lack of knowledge and skills in knowing how to treat serious mental illness through medication and/or psychotherapy. I, myself, felt this limitation, and lamented at my inability to help my client more. Sometimes the constraints are due to the lack of financial and/or professional resources available to ensure people with serious mental illness get the help they need. And sometimes, the very sad reality is that some illnesses, when they become severe, are sometimes beyond treatment: death is the only healing option. When suicide is understood in this way, one can no longer see it as a sin in the sense that the person who died by suicide committed a sin. However, we still need to be honest in saying that suicide feels wrong. In the ideal world where we would have unlimited knowledge and resources and skills, suicide would not happened, and yet this is not the earthly world we live in. Suicide does happen, and when it does, we lament the fact that it has occurred. This is what I was experiencing at the memorial for my client who died of suicide. When we turn to MAID, many people of faith see MAID as a form of suicide: people are choosing to die. However, as I, as a SCP, walk with people as they explore MAID and sometimes chose it, the reasons for MAID are very similar to issues people face around suicide: there is no hope of a better future and the pain they fear or are feeling is too great to bear. The Pain Involved in Dying People often see dying as a physically painful process, and it can be but palliatively trained doctors do everything possible to keep the patient's pain level well-managed, and in the vast majority of cases, it can be. However, some people don't respond well to opioids and so their pain levels are harder to control, and physical pain becomes a bigger issue. Furthermore, when patients start receiving higher dosages of pain medications, they begin to experience the side effects of these drugs: tiredness, dopiness, clouded judgement, hallucinations, etc. Doctors often work closely with patients and their family to find the right balance between pain-tolerance and clear alertness and awakeness. Sometimes this balance is not possible, and so often a pain-free state is chosen by the patient and family through sedation. It is important to realize that the pain behind a MAID request is less about physical pain and more about emotional and spiritual distress. There are a lot of fears and anxieties that arise for people during the dying process. For people who have breathing issues, it is the panic that arises around not being able to breathe, although doctors can often manage this breathlessness through medication. For people who have a need to be in control of their life, they experience intense anxiety as they begin to lose control of it. For some, they cannot imagine losing their ability of using a toilet, and thus experiencing all the potential shame that may arise around uncontrolled bladder and bowel functions, or the need to wear pull-ups. For others, they fear becoming a burden to others, especially to those who they have caregived all their life. For some, it is their fear of what happens upon death...whether it be a judgement that they associate with death and the afterlife due to religious beliefs or simply the unknown. For others, it is fear of potential physical pain toward the end of their life that could arise due to things like tube feeding being stopped. To help people process, manage, and potentially alleviate these many emotions, medication, psychotherapy through spiritual care providers, social workers, and other staff, and emotional/spiritual support provided by family, friends and volunteers are helpful. As I walk with clients and began to understand the different fears and spiritual distress they encounter around dying, I have come to appreciate why people want to talk about MAID. Like the people who suffer from suicide ideation, they cannot imagine having to experience the reality of their dying process. MAID seems as an attractive legal option. Before MAID Before Medical Assistance in Dying became legal in June, 2016 in Canada, people died naturally using medication as necessary to manage physical and emotional pain as it arose. When physical and emotional pain was beyond what the client could endured, then the client could request palliative sedation. This involves using medication to place the client into a comfortable unconscious state free of pain and suffering. From here, no longer able to eat or drink, which is often what happens in natural death when people are naturally asleep or unconscious toward the end of their life, the person would slowly die over a few days, often surrounded by family and friends. In many ways, one could see palliative sedation as a milder form of MAID. The person is still choosing to die, medication is still used to put the client into an unconscious state, but instead of dying happening over a 10-15 minute period like it does with MAID, it happens over a period of days due to lack of fluids and nutrition. The Arising of MAID The push for the legalization of MAID in Canada first began with Sue Rodriguez in 1993 who had Amyotrophic lateral sclerosis (ALS). She argued that “if I cannot give consent to my own death, whose body is this? Who owns my life.” In 1993, the Supreme Court of Canada ruled 5-4 that prohibition on assisted suicide was not in violation of the Canadian Charter of Rights and Freedoms. Twenty-two years later, Kay Carter, who had severe spinal stenosis, and Gloria Taylor, who had ALS, brought their case to the Supreme Court of Canada based on intolerable suffering. On Feb 6, 2015, the Supreme Court ruled unanimously that “competent adults who are suffering intolerably as a result of a grievous and irremediable medical condition would no longer be restricted from accessing an assisted death.” A year later, in June 2016, Bill C-14 allowing for Medically Assistance Death was passed by the House of Commons. (quotes and facts taken from Powerpoint slides presented by Dr. Martha Taylor and NP Cindy Shobbrook to Lisaard and Innisfree Hospice staff in September, 2022). Who Can Receive MAID Based on the latest law involving MAID ( Bill C-7, March 17, 2021), there are currently two pathways to receiving MAID. Both tracks involve the person having a grievous and irremediable medical condition that meets the following conditions:
One of the changes that came with Bill C-7 was around capacity. In the original Bill C-14, the person receiving MAID had to have mental capacity at the time of the MAID procedure. Due to fears of losing capacity, this was causing people to have MAID sooner than they needed or wish to. With the new Bill C-7, a person requesting MAID now must only have capacity at the time of requesting and being assessed for MAID. They can then complete a waiver of consent which is “an agreement to proceed with MAID, even if the patient has lost capacity on or before the date of the Waiver Agreement.” This change has allowed clients to be assessed and approved for MAID, but then wait until their health fails more and then they can set the date for MAID to happen. (facts and quote taken from Powerpoint slides presented by Dr. Martha Taylor and NP Cindy Shobbrook to Lisaard and Innisfree Hospice staff in September, 2022). Safeguards around MAID It is important to realize that the decision to choose and do MAID is not taken lightly. There are many safeguards that have been legally put in place. They include the following:
As a SCP, I find that when clients bring up questions of MAID, it provides an opportunity to process their fears around dying, and what is behind these fears. Many are relieved that there is an option that they can legally access if the experience of suffering and pain becomes too great. However, just because people get assessed and approved for MAID does not mean that they will access MAID in the end. Many do not and end up dying naturally. The Stats around MAID Based on the 2021 annual report from the Government of Canada, 10,064 MAID deaths occurred in 2021, 2.2% of them being track 2 MAID deaths where natural death was not reasonably foreseeable (https://www.canada.ca/en/health-canada/services/medical-assistance-dying/annual-report-2021.html). The rest were track 1 MAID deaths. As of March 31, 2021, 2.2 percent of deaths in Waterloo Region happened by MAID, 2.7% in Ontario, and 3.3 percent in Canada. Provincially, the total percentage of MAID deaths in 2019 was 1.7, 2.7 in 2020, and 3.3 in 2021. (facts taken from Powerpoint slides presented by Dr. Martha Taylor and NP Cindy Shobbrook to Lisaard and Innisfree Hospice staff in September, 2022). Theological questions around MAID As I help people explore MAID, one of the major theological questions is how MAID can be part of God’s will. This question is in the background of certain negative judgements people make about MAID. Some people have told me that MAID feels like humans are playing God around death, that God knows when we are going to die, and thus people should not interfere with the timing of our death. Some of these people point to the Bible as evidence of their belief. For example, Ecclesiastes 3 is sometimes quoted: “For everything there is a season, and a time for every matter under heaven: a time to be born, and a time to die; a time to plant, and a time to pluck up what is planted”. However, time in this text means that these opposing but connected experiences are a part of life, that life and death are a part of what makes up life. This text is not referring to the belief that God has set a time when we are going to die, and thus we should not tamper with the timing of our death. Another commonly quoted text is from Psalm 139. Here the psalmist writes, “Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.” This text suggests that the author of this Psalm believed that every day of our life is recorded within God’s book of life. There is much mystery and debate within Christian theology about how the dialectic tension between human freedom and God’s preordained will plays out in human life. What we can say is that if God knows when tragic death happens to people whether it be death at war, a car accident, or suicide, then God also knows when someone will choose a MAID death. If God is all knowing, as much of Christian theology teaches, then it follows that God knows when we are going to die regardless of how it happens. The bigger question for many critics of MAID, especially for people of faith, is how humans are playing God when people choose MAID. This an interesting argument for many aspects of health care involves medical professionals intentionally intervening with illnesses with the goal of keeping people from dying. Without human intervention, death would occur. Within this context, we don’t consider medical interventions as humans playing God. Rather, medical professionals are following or aligning themselves with the will of God in keeping the person alive, healthy as possible, and able to live a meaningful life. However, within this life context, death is seen as the enemy, and healing involves removing the threat of dying so that the person can still live a fulfilling life. However, death is not always the enemy. There are times in life when death is a friend, even from God's perspective. Within palliative care and the process of dying, we see this truth very clearly. As the experience of suffering deepens and life becomes less and less meaningful, a transition happens within the sick person and their family from seeing death as their enemy to seeing death as their friend. No longer finding life in this earthly world fulfilling, dying people look forward to the cessation of suffering and healing of their soul that comes through physical death. It is in this framework of death being a friend, even in God’s eyes, that Medical Assistance in Dying begins to make ethical sense, even within a faith framework. Just as the goal of medical care is to alleviate suffering within life, does it not make sense that the goal of medical care within context of death and dying is also to alleviate suffering? How can one still say that medical professionals are playing God when performing the procedure of MAID when they are aligning themselves with the will of God through embracing death, at the end of life, as our friend? How to Bring the Sacred into the MAID Process When I decided to be involved in helping people process the MAID question and support them going through the MAID process, if that was their wish, I began to invite clients and families to consider doing a blessing ritual before the MAID procedure happened. For those who took up this invitation, I helped them developed some form of good-bye service that could include music, readings, blessings from family members, and possibly a final blessing prayer, similar to the one I share with family members who are in vigil around a dying loved one waiting for them die. One of the gifts I have found with MAID is that it often causes clients and their families to be more intentional around saying good-bye to each other. Often times, in natural dying situations, family members avoid having these mutual good-bye conversations, and so when family members finally get to the place of having them, their loved one is often unconscious and no longer able to respond to them. I still encourage family members to talk to their dying loved ones during these good-bye times for we know hearing is the last sense that people lose before they die. However, in MAID situations, these good-bye times are often quite mutual and can be very meaningful. I remember a MAID service where a wife and four adult children said good-bye to their dying husband and father. After each family member spoke their final words to their treasured loved one, the dying man responded with his words of blessings to them personalizing them to the person who just shared their good-bye blessing. It was quite touching. And then the family began spontaneously staring story after story of treasured times they had together with him. I had to interrupt them to say a final prayer and then I encouraged them to continue their story telling until the MAID doctor came to do the procedure. In another MAID service, I was with my client, his adult children and his two sisters in his home in Kitchener. In this case, since it was during COVID, I connected them, by a video platform, to his brother and relatives out in Western Canada. As part of the final blessing time, the client asked me to play the song “It is a wonderful world” by Louis Armstrong. I was able to find a video on the Internet which included some introductory reflections by Armstrong that my client really liked. Following the song, I invited his sister to share some final words of blessings and then his brother spoke to us from Western Canada thanking his brother for their friendship and the many good times they shared. My Concerns Around MAID Up to now, I have shared how I see MAID as an important option within the field of Palliative Care, and an option that people should have access to. However, I also have concerns around how MAID will be used in the future. I am not alone in having these concerns. An Angus Reid poll done in January, 2020 revealed that while the majority of Canadians were supportive of people having the option of MAID, there were many concerns around the use of MAID. (https://www.cardus.ca/research/health/reports/broad-support-for-maid-in-canada-has-caveats-and-concerns/) As I have noted, a lot of the reasons people chose MAID is less about the reality of physical pain and more about the existential distress that people experience as they go through the dying process. As I highlighted earlier about suicide, the reason that people die of suicide is primarily related to the limitations within the mental health field to address existential suffering, limitations due to lack of finances, lack of skilled professionals, lack of personal support from others, or lack of skills and knowledge around how to heal certain forms of mental illness. When people find themselves in this place of despair and hopelessness, suicide appears as the only option to them.
This experience of hopelessness is now expanding as our health and social safety net begins to break down. Due to the breakdown happening within our health care system caused by the lack of public financial funding and lack of professional staffing, people who used to find life meaningful, despite their health issues, are no longer finding this to be true. This is illustrated by a CTV news article (Sept 29, 2022) where a quadriplegic man is seeking MAID due poor home care condition ( https://montreal.ctvnews.ca/i-can-t-live-that-way-montreal-man-seeking-medically-assisted-death-due-to-home-care-conditions-1.6090165). Long Term Care residents are struggling with existential suffering issues due to insufficient staff to handle all the physical and emotional needs of residents in their LTC homes. To deal with this staff shortfall and the behaviors it creates in their residents, this CBC News article (Sept 14, 2022) suggest that many LTC residents are being medicated (https://www.cbc.ca/news/canada/kitchener-waterloo/antipsychotic-drugs-ltc-long-term-quality-of-care-seniors-residents-1.6581068). But the reason people may want to chose MAID in the future may not be entirely related to poor physical health. As one MAID applicant indicated in a CBC New article (July 11, 2022), who has been diagnosed with Long Term COVID, it is totally financial. Right now, Ontario Disability Support Program (ODSP), does not recognize long-term COVID as a disability, but even if it did, this MAID applicant would only get $1,169 which is impossible to live on (https://toronto.ctvnews.ca/ontario-woman-enduring-effects-of-long-covid-begins-process-for-medically-assisted-death-1.5976944). I hope by now you are beginning to see the issue I am highlighting. As people experience more and more intolerable existential suffering due to our health and social network failing to provide adequate care and support, more and more people will apply for MAID. Right now, most of these people will be ineligible for MAID because their sole underlying medical condition (SUMC) is tied to their mental health. However next spring, our government has promised to legalized another path for MAID for those who have mental illness as their sole underlying medical condition. Currently, the majority of persons who have mental illness as their SUMC are not eligible for MAID. This exclusion will be automatically repealed on March 17, 2023. Currently, the Ministers of Health and Justice are working with a team of experts to develop protocols, guidance and safeguards to apply to requests made for MAID by persons who have a mental illness (https://www.canada.ca/en/health-canada/corporate/about-health-canada/public-engagement/external-advisory-bodies/expert-panel-maid-mental-illness/final-report-expert-panel-maid-mental-illness.html#a11). It is important to realize that the issue, as I see it, is not the legalization of MAID. The use of MAID is really a barometer of how well our culture and society care for those who are experiencing existential suffering due to physical and mental conditions. If our health system and social support systems within our governments, non-profits, businesses, faith communities, family and friendship circles are functioning well, then MAID will only be requested in limited situations. However, if our society and culture fails to support well people struggling with health and existential issues, people will naturally seek out MAID as a legal option to escape this world that they experience as having too much suffering. Conclusion In this blog, I have shared my reflections and learnings as I care for people who choose MAID as their spiritual care provider. While I appreciate the reasons that people opt for MAID and understand how MAID can be seen as a valid choice, even within a faith framework, the existence of MAID demands that we, as a society and culture, including our faith communities, families and friendship circles, rise to the challenge of supporting those who are suffering. If we don't, MAID may become the option of choice, and if it does, I think that says more about the failure of our culture and society and its various support networks than it does about the person choosing MAID. Gord Alton MDiv RP CASC Supervisor-Educator
3 Comments
Mary Martin
10/12/2022 12:06:40 pm
Thank you for your thought provoking blog. You have put into words what I have thought and felt ever since MAID has been legalized in Canada. May you be richly blessed as you work in palliative care.
Reply
Myron Daniel Steinman
10/12/2022 12:37:56 pm
Hi Gord Alton
Reply
MaryLynn
10/15/2022 01:05:29 pm
Thank you Gord for a very thoughtful and sensitive blog. Providing these thoughts on a spiritual level was very insightful. Your blog has helped me when dealing with these same issues. I appreciate your thoughts and the way you have looked at the Maid especially for those who struggle with the faith aspect of it.
Reply
Leave a Reply. |