HUMA Committee Meeting

    I call the meeting to order.

    Good morning, everyone. We're going to get started right away this morning. We do have a busy morning, and there is a chance that we're going to get interrupted.

    Without any further ado, pursuant to Standing Order 108(2) and the motion adopted by the committee on Tuesday, September 18, 2018, the committee is resuming its study of supporting families after the loss of a child.

    Today the committee will be hearing from witnesses and will deal with some committee business a little bit later.

    I want to introduce all of the witnesses here today. Appearing as individuals, we have Susan Cadell, professor, school of social work, Renison University College at the University of Waterloo. Welcome to you.

    We have Karima Joy, Ph.D. candidate, Dalla Lana School of Public Health, social and behavioural health sciences, University of Toronto. Welcome.

    We have Mary Ellen Macdonald, associate professor, pediatric palliative care research program, McGill University. Welcome.

     Coming to us via video conference from Montreal, we have Moire Stevenson, psychologist, MAB-Mackay Rehabilitation Centre.

    You can hear me okay, obviously.

     Yes.

    Also appearing here in Ottawa, from Fraser Health, is Alexandra Lihou. Ms. Lihou is a registered clinical counsellor in the reproductive mental health program at Royal Columbian Hospital. Welcome.

    Thank you very much, all of you, for being here today. We're going to start with opening statements of seven minutes each.

    First up, we have Susan Cadell. Seven minutes are yours.

     Thank you very much.

    First of all, I'd like to say that I am very grateful for the work of this committee and that I'm honoured to be here today to present some of my work.

    Let me introduce myself. I am a social worker by training. I have a number of years in family practice—in family counselling, including grief counselling. Now I'm an academic with a research program in death and dying, and grief and loss, for 20 years. I'm one of the few social work researchers in Canada in pediatric palliative care, and I have an association with Canuck Place Children's Hospice in Vancouver. I'm a wife and a mother to three adult children.

     I have never experienced the death of a child. My research work in grief, however, began after my own experience of numerous friends dying of AIDS.

    The first point I want to underline is our changing understanding of grief.

     My social work education included absolutely nothing at all about grief and loss, death and dying. All my training and understanding has come from my own research and the collaborations in which I've been involved.

    We now acknowledge in the field that grief does not end. There is still the popular notion that there are some stages involved in this, but that's largely been debunked. Grief is about relationship, and it's the price we pay for loving. When someone we care about dies, our relationship with them changes; it does not end. The work of grief is making that transformation. Now we talk about continuing bonds, not severing or detaching. There is no timeline. Grief can and does resurface months and years after a death.

    Death is a part of life. Hospice palliative care is a philosophy of care that includes the notion that death is a part of life. Many of us do not like to talk about death and dying, and by consequence, grief is often stigmatized. Grieving is difficult. Grieving is difficult when someone close dies. Grieving is difficult when that death defies expectations. For the most part in this country, we expect that as adults and parents, children will outlive us.

    Grief can be supported when it is acknowledged. This is often not the case, because people don't like to talk about death and dying. This makes grieving harder when the griever encounters people and systems that do not understand what the griever is going through. Supporting grief does not mean making it better. Grief is harder when it is ignored by those around us. Supporting grief means acknowledging that there is nothing that does make it better.

    We often think we should no longer talk about the person who died. While this may be true in some cultural contexts, for the most part the participants in various research projects that I've been involved in are clear that they feel unsupported when people ignore their grief and do not talk about the person who died. Talking about the person who died, whatever the age or relationship, does not make grief harder.

    The next point I want to underline is the idea of the worst kind of grief.

     The grief literature is full of the notion that parental bereavement is the worst kind of grief, and I want to say that I'm guilty of this. If you look at some of my publications, I have written that.

    Over the years, in my practice and research, I've come to realize that this creates a hierarchy of grief that is a disservice to everyone. Especially in a context in which we are uncomfortable with death and grief, a hierarchy of grief only distances grieving parents even more. People often feel afraid of grieving parents and are afraid of saying the wrong thing.

     In my head, I have the voice of a research participant. She told me a story about seeing someone she knows crossing the street to avoid her when she was a bereaved parent.

    We need to be careful not to perpetuate the notion that some kinds of grief are worse than others. Grief is very personal and individual. When we talk about kinds that are worse than others, we make it harder for people and systems to support them.

    Telling the story matters a lot. I have a good friend—and we collaborate on a current research project—whose son died 16 years ago at 22 weeks of pregnancy. I've heard her grief story many times, but in preparing for today, I realized I had never heard the part about going back to work, so I called her and I asked.

     She said two things that stick with me particularly that I'm bringing here to you. One was that she repeatedly had to navigate the system of unemployment insurance. She had to tell her story over and over again to various people numerous times. She felt that they were all cold. Her wish was for a system that, upon hearing of the death of a child, would immediately refer the person seeking services to an individual or a specific service where the people are qualified to listen, to support, and to help navigate the system.

    When people participate in research, they're choosing to tell their story. Our participants often feel validated in doing this. The choice of telling can be therapeutic when it is received in a supportive context. The need to repeatedly tell one's story to a person or people is unnecessary and potentially cruel. The key here is choice. Grieving parents need to be given choices. Even when something needs to happen, they should be able to choose the timing of it. In an ideal system context, this would involve the parents choosing appointment times to deal with necessary tasks and built-in flexibility in the system so that if they just couldn't possibly do it that day, in an unexpected way, then they could reschedule.

    The second point my friend brought up to me is that even though she got her maternity leave sorted out, there was nothing for her partner. His only option was to request sick leave through his doctor. In grief, many people are left behind in our society. In the context of the death of a child or infant or pregnancy loss, husbands and partners are often forgotten. Fathers grieve too, and they need support.

     Siblings are also forgotten. There are often other children—before or after—and sibling bereavement has lifelong consequences. Grandparents are also sorely neglected. Grief sends ripple effects through families and communities for years.

    I want to close by saying that I think the motion I've read about and the proposed changes are definitely a step in the right direction. Grief is being acknowledged, as is the recognition that a system can support when the people working in that system are also prepared with the skills to do that. But I see this as only a first step. I began with the notion that death is part of life. Bereavement in general needs to be better recognized and supported in our society. We need public education as well as skills development for those in the systems of government.

    I commend you on this first step, and I thank you for this opportunity to present to you.

    Thank you very much.

    Up next we have Karima Joy, a Ph.D. candidate at the Dalla Lana School of Public Health in the social and behavioural health sciences division at the University of Toronto.

    Thank you for inviting me today and to Blake Richards for Motion 110.

    As mentioned, I am a Ph.D. candidate at the University of Toronto. I have a master's degree in social work and am a registered social worker. I hold a Joseph Armand Bombardier Canada graduate scholarship. I am also a parent. I have not lost a child to death.

    My dissertation topic—which, to be clear, is in the early stages—is about how bereavement experiences in Canada are accommodated in federal and provincial legislation and workplaces, with a focus on those in precarious employment.

    I have experienced the life-shattering grief that comes from love and loss. In one instance, I found myself caregiving for my then-partner's family after his dad's sudden death from pancreatic cancer. Unable to negotiate a leave from my contract position, I left my job for four months to care for the family, entering a precarious situation with my employer. I did not have the capacity to think clearly or consider my financial or career consequences.

    Stung by feelings of helplessness at the lack of resources and support, I was motivated to learn about how to better prepare for bereavement. I have now worked for a decade in the bereavement field, including for a suicide loss survivor program in Toronto and Bereaved Families Ontario-Toronto, an agency that for the last 40 years has been dedicated to supporting families grieving all types of losses. Witnessing how underfunded and overburdened these agencies were, I was moved to study bereavement academically to explore the macro forces impacting these circumstances.

    I have completed an extensive review of the academic literature and found that the scholarship in this area mainly explores psychological or therapeutic aspects of grief, which does not adequately capture the role of social, economic and political factors that shape the space allotted to accommodate these experiences. However, this is changing, and attention is increasingly being directed to the context of bereavement.

    The best Canadian study on this topic that I have come across is by Mary Ellen Macdonald, Susan Cadell—who are here today—and their colleagues. In it they compare and critically analyze Canadian and international bereavement legislation. One important question they ask is why other leaves—parental, maternity and compassionate care leave—are offered generous provisions, but bereavement leave is not. Their answer is that grief is not considered labour or a public good, an attitude that needs to be challenged as it communicates to Canadians that their grief is undeserving of attention and support, forcing people to suffer in silence.

    Bereaved individuals often feel pressure to return to work and resume productivity. Prematurely returning to work may restrict some employees' grief experiences, negatively impacting their well-being and mental and physical health. Presenteeism can affect workplace productivity and costs more than absenteeism, meaning that returning to work does not signify that bereaved employees are ready to resume full functioning. Consequently, workplaces may face an increase in sick leaves, lower quality and quantity of work, and lower employee morale.

     There is a lack of accountability or funding for bereavement, as it is not under the mandate of any Canadian health system, professional association or government jurisdiction. Alternatively, the American Hospice Foundation argues that offering bereavement programs and flexible leave arrangements leads to improved employee morale and a decrease in sick leaves and staff turnover.

    Some employees have access to more generous leave, depending on their employer and labour arrangement. However, those in precarious employment—a work arrangement that offers limited job security, stability or protections—may be more vulnerable to bereavement, given that they have little or no access to standard benefits, facing concerns that taking leave would threaten their job or financial security. In Ontario, for example, precarious employment is increasingly the norm for workers across demographic categories, impacting everybody. Faced with funeral expenses, unpaid time from work, or job loss, individuals in precarious employment may be forced to choose between grief and poverty. Therefore, I want to caution that if EI is the chosen mechanism for a bereavement benefit, there may be a significant and vulnerable group who will not qualify, putting them at risk for further marginalization.

    In my notes, I included an appendix—and I don't know if you have access to it—of the Canada Employment Insurance Commission's “2016/2017 Employment Insurance Monitoring and Assessment Report”. It illustrates how large some of these groups are that may fall into the gaps of not being covered by EI.

    For my recommendations, I agree with many of the solutions that have been proposed in the past meetings, including training Service Canada employees with a skill set that is compassionate to grief and bereavement;

having a dedicated Service Canada bereavement line, or creating a landing page or one-stop shop for grief and bereavement; preventing Canada child benefit overpayments and clawbacks; and initiating a bereavement awareness campaign to communicate to Canadians that the Government of Canada values and respects grief.

    Also, consider introducing incentives for employers or workplaces to support bereavement and examine other models and systems of support for parental bereavement, including the U.K.'s new parental bereavement, the Canada benefit for parents of young victims of crime, and Ontario's child death leave to figure out how they're organizing their policies.

    Grief arises out of our humanity and capacity to love and attach to each other. No one should be marginalized or punished for that. We need to value our relationality and interdependence. All levels of government need to proactively take responsibility for bereavement so that we can move past death ambivalence towards respecting grief as one of our greatest expressions of humanity. Taking responsibility for bereavement accommodation can support Canadian families and workers as they adapt to death and transition back to work.

    Thank you.

    Thank you very much.

    Up next we have Mary Ellen Macdonald, associate professor with the pediatric palliative care research program at McGill University.

     Thank you.

    I would like to begin by thanking the committee for taking so seriously an issue that has simply not had a public place to be voiced.

    I come to this panel as an academic. I'm a medical anthropologist with 15 years of experience researching socio-cultural issues in death, dying and bereavement. As an anthropologist, I can contribute to these issues through a social and cultural lens and offer my reflections.

    I will start with a small point for consideration, and this has to do with the language of loss that is in the motion and also in the language that we use for talking about death.

    Euphemisms for difficult topics are common, given our discomfort with difficult issues. However, a deceased person is not really lost. While they are no longer physically present, they remain present in their loved ones' lives in new, transformed ways, even after the death.

    We have heard in prior testimony about the relationship that bereaved parents have with their deceased children. They strive to keep their children present through legacy projects, through scholarships, through saying the child's name out loud. One witness mentioned that this was how she continued to parent her deceased child. I worry that the language of loss misrepresents these parenting efforts.

    My second point is also a concern about clarity. In the original version I received about this motion, the focus seemed to be on infant death. In listening to the testimony, it seems that this has shifted to child death more broadly, and I certainly support that broadening scope. My concern, however, is how discourses on grief, both in the academic and in the public realm, can produce what Professor Cadell has called a hierarchy of grief. From my knowledge of the scientific literature, these hierarchies are much more political than they are supported by science.

    We are compelled to be concerned about some kinds of death, such as infant death, in ways that other kinds of grief seem to not merit—a hospice death of an elderly spouse or death by suicide. I am concerned that the motion may contribute unwittingly to reproducing such a hierarchy by focusing first on the death of an infant child compared to other children, including adult children, and second by focusing on parents as compared to other kinds of grievers, such as grandparents.

    Of course, parents whose infant child has died need more support than our context currently affords; however, so do all grieving parents, and indeed all grieving people. My concern is that such distinctions may actually do harm to the other grievers by excluding them and thereby reinforcing the isolation in which they are already living.

    If the concern is really to attend to the issues of grieving an infant child, then I wonder why we should consider infant death differently from other kinds of parental grief. While the death of an infant child will certainly produce unique experiences and sequelae, I'm not aware of definitive literature that suggests infant loss merits extra special treatment when compared to other kinds of grief. In contrast, I think that the literature shows that age is a very complex variable when it comes to understanding grieving the death of a child, and we need to be careful about our assumptions. Older couples who experience the death of an adult child can be catastrophically impacted as well.

    If the concern is to attend to the issues of grief more generally, then I wonder why we would consider parental grief differently from other kinds of grief. The overall intent of the committee is to imagine ways to ensure that grieving parents do not suffer any undue financial and emotional hardship; I would put forth a plea that simply no grieving person should suffer such hardship. I am concerned that we might be creating new kinds of vulnerability by unwittingly reinforcing the idea that some kinds of grief do not matter as much.

    My third point has to do with normative social values. As Karima just mentioned, we did a review of bereavement accommodations in labour standards, first focusing on Canada and then internationally. A surprising homogeneity emerged in this review. Every document we analyzed categorically contradicted what the empirical research says about grief.

    The empirical literature pulls together a phenomenology of grief that describes it as individual, as isolating, as painful, as a process, as something that challenges and changes a person's identity and sense of self. It can manifest as a debilitating illness without a predictable presentation or course, with long-term sequelae and repercussions.

    The labour standards, in contrast, provide simple, managerial responses to accommodate a worker who needs to go to or plan a funeral, usually one to seven days with or without pay, depending on the jurisdiction.

     Grief is cast as a generic, time-limited process involving instrumental tasks that are resolved within a discrete time frame—planning and attending a funeral. The value of employee loyalty is also demonstrated in some programs through which an employee can access more generous leave based upon their years of service—not based upon the kind of death, as if you can actually earn the right to grieve.

    Upon closer examination of the language in the reports, we found a remarkable similarity in the values undergirding the documents. Birth, family life, caregiving, and religious practices are clearly celebrated through policies such as maternity and family leave, compassionate care benefits, and the allowance of time for funeral preparations. Workplace efficiency and economic salience were also primary concerns. What was entirely missing across all the documents was any kind of compassionate attention to caring for those workers who experience any kind of death.

    These findings were unfortunately not surprising. They corroborated our prior reflections on how society views and deals with grief. While we hear the phrase that we live in a death-denying society, it is actually our grief taboo that needs serious social attention.

    My final point has to do with responding to grief with sick leave. In our scan, we found that the only way to get extended leave is by drawing on sick leave policies, thereby turning grief into a medical category. We have heard similar comments in the evidence in these proceedings, and I have two concerns about this medicalization of grief.

    First, most physicians have very little training in any kind of grief support, and they seem to turn to pharmaceutical solutions quite quickly. Many bereaved parents with whom I have spoken are not comfortable with this approach and are seeking a kind of support that GPs simply do not have the training to offer.

    Second, and more fundamentally, treating grief as a sickness is perhaps exactly what we should not be doing. While of course some grief reactions need medical support, the research in public health suggests that the majority of grievers do not need specialized medical care. Instead, the literature suggests that efforts to normalize grief as a human experience will be much more successful in supporting the bereaved. Working to create a compassionate society that understands and supports grief will benefit all Canadians.

    Thank you.

    Thank you very much.

    Now, via video conference from Montreal, we have Moire Stevenson, psychologist, MAB-Mackay Rehabilitation Centre. Welcome.

     Thank you.

    First I want to say that I was delighted to see this motion going through and that we're moving forward with providing better support for bereaved families.

    What I will speaking to today will be based on my doctoral research that I did as part of a Ph.D. in research and intervention in clinical psychology. I will also be speaking from my perspective as a psychologist and also as a bereaved sibling who was raised by two bereaved parents.

    In my doctoral research, I interviewed 21 parents. I also interviewed seven health care professionals who provide bereavement support services to those parents and to parents in general. I have given the information to the committee in my speaker notes on where to find the peer-reviewed article that contains the results of that research and also my thesis, which puts the research into a broader context.

    I'll move on to my key points for today.

    I wholeheartedly agree with the comments made by the other witnesses. What I saw in the research that I did on the experiences of bereaved parents in the first year post-loss, and of parents reflecting back to that time one to five years post-loss, was that grief does not follow a timeline. We can't expect parents to have intense grief right after the loss and then be fine afterwards. We have to also understand that even years after the loss of their child—the death of their child—anniversaries and other difficult times of year can trigger parents to have, again, intense forms of grief.

    I also want to say that the subject of my research was not focused on employment. I was very much focused on their experiences and their perspectives on the services provided to them. However, despite that, there were still some comments made about employers and employment. Parents had mixed views on how their employers understood what was going on with them. Some employers were understanding, others were less so.

    Parents also spoke about returning to work. For some, it was a benefit. They wanted to keep busy. They wanted to get back to life. For others, it was too emotionally difficult and draining, and they also mentioned just not feeling ready.

    Parents also mentioned again these intense emotions of grief returning around anniversaries and different times of the year. The grief resulting from the death of a child stays with parents for a lifetime. The intensity of the grief may change over time, but it can be reactivated for various reasons.

    I also looked at the support that bereaved families receive. Many parents do fare well with little support because they feel well supported by their social networks, by their families, by different things that they already have in place. When I spoke to parents who felt that they did need support, they often felt that it was limited by the number of sessions provided, for example, by a social worker. Here in Quebec they receive 20 sessions.

    Also, lack of expertise by professionals in the public sector was noted as problematic and unhelpful.

    On a side note to that, I would just like to draw attention to the employee assistance program website, which I looked at the other day. To be honest, I was disappointed to read this statement from the grief section:

    That was far from the experience of the parents whom I interviewed. There is no detachment. There is a reattachment. There is a change—now I'm speaking from the perspective of a psychologist—from attachment to a child that is physically living to attachment to a child that no longer is alive, but it's still an attachment. There is no detachment. There is no letting go. That dates back to previous grief theories that, based on research such as mine, we no longer hold to be valid.

     To summarize, in my opinion employers should be willing to give parents leave following the death of their child, but parents should not be obligated to take this leave. It has to remain flexible.

    For example, a parent may return to work, thinking it will be helpful, and then become overwhelmed or experience an episode of depression. The parent should be able to take leave at that time. Employers should treat parents with dignity and respect, and we should all understand the language of grief.

    Parents should also be allowed to leave around the time of the anniversary of the death or on their child's birthday. In this regard, the parents I interviewed were very clear on what times of year were particularly difficult for them, so that is something that could most likely be pre-established.

    In this same regard, bereavement support services should be flexible, consistent, and conducted by professionals with a clear understanding of how to support bereaved parents.

    Once again, I just want to thank the committee for putting this motion forward. I hope that it continues to grow and that we continue to better support these families.

    Thank you.

    Thank you very much.

    Now, from Fraser Health, we have Alexandra Lihou, registered clinical counsellor, reproductive mental health program, Royal Columbian Hospital.

     Thank you.

    Good morning, and thank you for inviting me to speak here with you today. I'm honoured to be able to advocate for and represent the women and families that Motion 110 is exploring how to better support.

    I'm a registered clinical counsellor at the Fraser Health reproductive mental health program at Royal Columbian Hospital. I sit on the Fraser reproductive mental health operations committee and I'm the co-founder of the Fraser Health reproductive community of practice.

    As a clinician at the Fraser Health reproductive mental health program, I have the privilege of working with women who are struggling with new or pre-existing mental health concerns exacerbated due to struggles with fertility, premenstrual dysphoric disorder, pregnancy and the postpartum period, as well as pregnancy interruption, miscarriage, stillbirth and infant death.

    Our program provides psychiatric consultation as well as individual and group therapy. For those we support following the death of a child, we listen to their experiences of trauma, loss, grief, social isolation, interpersonal relationship struggles and financial hardship.

    Working with the bereaved mother, I provide grief therapy in two phases.

     In phase one, the mother tells me, and we work to process, the story of her conception, pregnancy and loss. I teach her about the five stages of grief and normalize the grieving process. We work to continue the bond between between the mother and the deceased baby. The goal is not to push the tragedy aside and move on, but to integrate the death into her life. We discuss rituals and ceremonies that the family has done or is planning to do to say goodbye to the baby, and we work on creating memories and meaning. I educate the mother about trauma, and we identify triggers that are impacting her and ways to manage and cope with them. We devise a communication plan and create and rehearse a script she can utilize for when she's asked where her baby is. We process emotions. We identify and validate the anger, guilt, blame and shame. We utilize mindfulness and increase her self-compassion.

    In phase two we work on reintegration. We work on strategies for the mother to start to face the previously identified triggers. We work on behaviour activation for depression, and we work on identifying new and appropriate supports. We cultivate ways for the mother to carry her baby forward with her and to learn how to parent the baby that has passed away, which is often through advocacy and supporting other grieving families.

    It is not sufficient nor realistic to believe a woman or her family can heal and move forward from the tragedy and trauma of their baby's dying in a few short weeks and a few short therapy sessions. I often hear from patients when they first arrive at our program that they had no idea our subspecialty existed until they were referred for our services. Patients are referred to the program by their family doctors, nurse practitioners, obstetricians and midwives, or following a visit to the hospital emergency room. If there are concerns regarding the mother's safety, the psychiatric urgent response clinic will bridge for us until we're able to see the patient, and we are grateful for their clinical support.

    Our wait-list can be long, and we are constantly problem-solving and developing programming options to try to alleviate the wait. Unfortunately, there is a shortage of appropriate, publicly funded, trauma-informed grief therapy for bereaved parents of miscarriage, stillbirth or infant death, and this is a problem. We have been working to mediate this concern and have created and host the Fraser reproductive mental health community of practice to provide support and education for community mental health clinicians.

    I would like to stress today that even after going through the most heart-wrenching experience of losing their baby, every single patient I have ever treated for a miscarriage, stillbirth or infant death has made the decision to try to conceive again. Approximately 85% of women who have suffered a loss will be pregnant again within 18 months. In my experience, most families continue trying to conceive again in approximately three to four months or as soon as they are medically cleared to do so.

    A concern is that after a loss, women who become pregnant again are often not able to complete the 600-hour minimum EI contribution in the 52 weeks prior to delivery.

     This is frequently due to psychological struggles or physical concerns, and they are advised not to work for the safety of the pregnancy. These are women who have contributed to EI their entire adult lives and are now not able to utilize the maternity or parental benefit because their beautiful baby died.

    I advocate today for the creation of a compassionate and educational government website dedicated to supporting bereaved families and parents, as well as community supports and clinicians. It would include a national directory of supports and resources available by province or territory; educational and supportive literature and PDF handouts that could be printed and utilized by the bereaved family, community supports and health care providers; access through a dedicated Service Canada team phone number to a team that would be trained with accurate information and that would learn to deliver it in a caring and empathetic manner; a link to the Service Canada website, which would have a section dedicated to providing bereaved parents with the information and services available to them; and possibly even a secure area for parents to report the loss online, request the stop of parental benefits, start a bereavement benefit or check and manage the status of their report from home.

    I advocate for a flexible bereavement benefit for both parents that could be accessed throughout the year following the loss. I recommend a total of 15 to 20 weeks for each parent, at a minimum. With regard to returning to work, a flexible or gradual entry schedule would be helpful.

    At the time of the loss, it is important to provide immediate supportive and clinical resources in a timely manner for both parents. The care provider who is attending to the family, be it the doctor, midwife, nurse or social worker, could utilize and share the government bereavement website to gain information and resources to better serve the family. They could also begin the process of an automatic enrolment for a bereavement benefit with the parents' consent at that time.

    Sustainable long-term supports also need to be addressed. Each bereavement is unique, and many families experience recurrent loss. Grieving parents and families benefit greatly from peer support, bereavement groups and clinical counselling. Through peer support and educating families, our local NGOs are doing such important and invaluable work in the effort to reduce isolation and stigma. They need predictable financial support to be able to maintain the quality of the work they are currently doing.

    Finally, I advocate for families who have gone on to conceive again to be able to access a maternity and parental benefit for pregnancy after a loss, based on their history of contributing to employment insurance, rather than on the 52 weeks before delivery.

    Thank you.

    Thank you very much.

    Up first for questions, we have MP Richards for six minutes.

     Thank you, Mr. Chair.

    I really appreciate the testimony, and you all being here, and the expertise you're sharing with us today.

    I am going to apologize to all of you in advance. I do have to do something that will take a little time away from the questioning today, but it's important that I do so. I would have waited until later in the meeting, but we're under the belief that there may be a motion moved in the House of Commons this morning that might take us away for a vote, so I apologize in advance for that interruption.

    I do have to move a motion this morning, and I want to make it clear when I move this motion that attempts may be made by a Liberal member to make it move in camera, or we may have it later be debated in camera, which means it won't be public, and any decision that would be made about this motion would not be public.

    I will make it very clear right now that if any decision other than to do as this motion indicates comes out, it will be because the Liberal government is trying to shut down the opportunity for this motion to proceed and do so in a timely fashion to be able to make sure that something can be done about the recommendations that this committee would make prior to an election.

    That's why I want to make that clear, in case that effort is made.

    On June 8, 2018, the House of Commons unanimously supported Motion 110 with all-party support. This important motion had this committee undertake a study of the impact of federal government programming on parents who have suffered the loss of an infant child and to make recommendations on what the federal government can implement to improve the level of support for grieving parents to ensure they do not experience further hardship.

     Parents have testified to this committee about the heart-wrenching experiences of dealing with cold and clinical government programming, such as when a Service Canada official told a grieving mother that, and I quote, “Your child ceases to exist so, therefore, the benefits will cease to exist.”

    This solidifies the fact that we as a committee have a responsibility to take immediate action to ensure that no grieving parent has to experience something like this again. This motion and study have received support from grieving parents across this country, who are counting on this committee to do its work and who are eagerly awaiting its recommendations.

    Motion 110 clearly set out that the committee report its findings and recommendations to the House within six months of the adoption of the motion, which would mean by December 8, 2018. The parents expect it to be tabled before the House rises for the winter recess.

    Therefore, I move:

    That's the motion I'm moving. I'm doing that simply because I want to ensure that grieving parents across this country who are expecting action, who want to see the recommendations of this committee and want to see them acted upon before a federal election will have that opportunity to see that happen. I certainly hope we will get unanimous support here at the committee for that to occur. I see no reason we can't get that, why that shouldn't be possible, and there would only be one reason why we wouldn't get that support. That would be simply because members of the government would not want to proceed to fix these problems for grieving parents.

    Thank you, Mr. Richards.

    Wayne, I know you want to speak. Just beforehand, I don't believe that the last statement was very appropriate, but aside from that, as the vice-chair and I have already discussed offline, the issue with being able to table this before we rise has very little if anything to do with our desire to see this done. I know John is very aware that this is an issue of being able to draft a report in a timely fashion, but also in a way that does justice to this study.

    We have asked for advice from the analyst to give us a sense of how long this could possibly take. Unfortunately, it would take us beyond the time in which we would be sitting.

    Go ahead, Wayne.

     Chair, can we suspend for a couple of minutes, please?

    We can. I will advise everybody that we are going to be running out of time very quickly this morning, but if we need a moment to recess, we can do that.

    Mr. Chair, before we do that, I just want to comment briefly on the comments you've just made.

    I don't believe it is an accurate statement that somehow there isn't time to deal with this motion. Last night I briefly had a look at this committee's past proceedings. For example, there was a report done by this committee on the temporary foreign worker program. The last date of witnesses was June 1. I believe that was 2016, and the report was then considered on June 13th, which was exactly 12 days later. That would be the exact same timeline as what's being proposed by this motion, so there is no doubt that this could be accomplished if there was a desire to do so.

    I can give many other examples from other committees—and even from this committee itself—of similar types of lengths, but certainly the indication from that report would show us that this is certainly possible. It would only be that there would be a desire and a willingness to do it.

    Taking that into consideration, that report actually was not tabled until the fall of that year. That being the case, I'd like to—

    Mr. Chair, tabling is not the issue. Your argument is that the report can't be done—

    Excuse me.

    There are other circumstances involved that did not apply in that situation. If I can ask the analyst to explain some of the logistics around this, that might clear this up.

    This is not a political issue. This is a logistics one.

    It's a will issue, Mr. Chair.

    It really is not. Just give me a moment, please.

    If you'd like to have it done, you can have it done.

    I'd like to ask the analyst to share what you shared with me this morning.

     The issue is not so much what we would need in terms of instructions from you guys and to draft the report; the issue is the production of a report that could be ready for consideration. It needs to be available in both languages. It also needs to be available now in a template that requires accessible format. That requires between two and a half to three weeks, just to turn around before we even write the report.

    Unfortunately, it is the production of a report that the committee can consider in the formats that need to be available that is really the issue that makes it very difficult for us.

    We calculated that if you gave us drafting instructions next.... Was it the 22nd?

     The original idea had been the 27th. I think Mr. Richards mentioned the 22nd.

    We'd basically have a couple of days to draft a report.

    No, that leaves you 12 days to draft the report.

    No, it's the production of the report that can be tabled to the committee, unfortunately.

    We have a request to suspend. I'm going to say—

    Excuse me.

    Given the analyst's comments here, I move that the debate be adjourned.

    I will point out that this is exactly what we expected to have happen, and it's very unfortunate.

    Excuse me; you don't have the floor.

    We have a vote. This is continued debate. We cannot continue debate. We have a motion.

    All those in favour of that motion to adjourn the debate, please signify.

    (Motion agreed to [See Minutes of Proceedings])

    The Chair: Mr. Richards, you have—

    I'd ask people to note that the vote proceeded, and what side voted for it and what side voted against it. I think that makes it very clear what occurred here.

    Mr. Richards, you have four minutes remaining on your time. Do you wish to use that time?

     Yes, I certainly do, Mr. Chair.

    I find it incredibly unfortunate that despite evidence being presented to the contrary that this could be done—it certainly could be—it is very unfortunate that the government is choosing to ignore that evidence and to unfortunately not take this issue seriously for parents to make sure that they get the opportunity to see this done and dealt with before a federal election. I certainly hope that people will remember that and put the pressure on this government to move on a much faster timeline.

    Having said that, I want to move now to some questioning. I do apologize for the interruption. That was obviously a very important thing, because we have to ensure that this gets dealt with. If the committee report is not dealt with before Christmas, we may lose the opportunity for it to get dealt with before a federal election, unfortunately. I would find it incredibly unfortunate for this to simply be a report that gathers dust on the shelf. That's why it was important that we do that.

    Again, I apologize, but I do want to ask some questions, certainly.

    I'll start with one that all of you—or any of you who would like to respond and are able to—can respond to.

    It seems that throughout the study when we've heard from the various parents, and from advocates for grieving parents as well, two things have come up quite consistently. Some of you brought them up this morning as well.

     These are the need for a couple of things, one of them being a grief benefit that would be universal, automatic and specific to grief and not about trying to find ways to make other programs work for them, so they don't have to continue to tell their stories over and over again. That would be the first suggestion. The second one we've heard quite frequently is about some kind of dedicated resources for grieving parents as well, maybe a dedicated line at Service Canada or a dedicated section on the website and these types of things.

     I want to hear comments from any of you who would like to comment on those two things as to whether you see them being the appropriate response and whether you think those would be important.

    Who would like to go first?

     I think the idea of a grief benefit, a bereavement benefit, would go a long way to recognizing that grief exists and that death is a part of life.

    On the pieces that are lacking in behind some of these issues in terms of the education in professions like mine—in social work—I think that if there were a benefit and that recognition, the education would follow. I think some kind of dedicated line, service, website or whatever again puts the recognition out that this is something that requires care.

     Go ahead, Moire.

     I'd like to speak to the second point about the dedicated resources, because I think that falls more in line with my expertise as a psychologist and also with the research that I obtained.

    If you're going to have dedicated resources, they should be evidence-based. Also, bereaved parents should be consulted on those resources to make sure that they actually fit with their experiences. I'd also like to underline the importance of training the professionals working with the bereaved in general and bereaved parents and siblings specifically.

    We did a small project here in Montreal with Le Phare, which is a children's hospice. They created an online training program for nurses at CLSC in pediatric palliative care, and it included a section on bereaved parents and supporting bereaved parents. I'm mentioning that to show the feasibility of doing something like that. Not only should we have dedicated resources, but we should have easy-to-obtain training for professionals working with bereaved parents.

    Thank you.

    Go ahead, Mr. Long, please.

    Mr. Blake Richards: Thank you, and I apologize.

    Thank you, Mr. Chair.

    Thank you to the committee for testifying this morning. I'm sorry that you had to witness that. I think we've been making great bipartisan progress on this study. I'm new to politics, but I apologize. Sometimes politics and political stunts get in the way of trying to do the right thing.

    My first question will be for you, Dr. Stevenson. Do you have any suggestions as to how we as a government can craft a definition of grief that encompasses the individualized experience of Canadians with grief, does not medicalize it and does not inadvertently create a hierarchy of types of grief?

     In defining grief, there are many things to consider. One of the main ones is that grief is a process, and most often a lifelong process. This process also includes changes in meaning-making and understanding of the world, and the bonds that those parents or the bereaved have with the people they've lost.

    If I was to write a definition of grief that would be most valid to the research we now have, those would be the two things I would include. There would be three, actually: the process, the making sense or the meaning-making, and the continuing bonds with the deceased.

    Thank you.

    Do any of our other witnesses want to chime in on that one?

    The three of us are all guests or members of an incredible resource that none of us has mentioned, which is the International Work Group on Death, Dying and Bereavement, and of which there are many proud Canadian members.

    Our most recent meeting was in June this past year. I was one of the co-hosts, and it was in London, Ontario, at King's University College. It is an international group of experts in the field, and they, especially the Canadian ones, would jump at the challenge to help craft a definition.

    Are you saying the group's composed of different countries? Is it international?

    Members are from different countries. There are many Canadian members, and they're members from many different disciplines. There are psychologists and social workers and physicians and nurses and bereavement counsellors. There are funeral directors. There are people who practise in the area, as well as those who research in the area. We cross all aspects of death, dying and bereavement.

    Is it based in Canada?

    No, it's not. It's an international organization, and the past president is based in Canada. Our last meeting was in Canada, but the meetings move around. Our next one is in Zimbabwe.

    Mary Ellen and I knew each other, and we met Karima at the last meeting, yet none of us mentioned this. It just seemed a great lack at this point, so I wanted to mention it.

    Thank you.

    Ms. Macdonald, thanks for your testimony. How can we provide universal, flexible and individualized supports for those experiencing grief, without medicalizing grief or inadvertently creating a hierarchy of types of grief?

    That's a great question, and a really fabulous example, historically, is looking at what happened with maternity benefits.

    Maternity, pregnancy, has kind of swung from something that happened with midwives to something that happened in hospital to something that's happening with midwives.

    It was hyper-medicalized at one point, but now we don't think of maternity benefits as a medicalizing kind of benefit. It's a right for mothers and fathers, so I think that would be the best kind of historic example to think of: how we should be thinking about grief as just part of life. It's just part of something that happens to people, and they need support for it.

    Thank you.

    Ms. Joy and Ms. Cadell, I want to talk to you just about the EI benefits and the flexibility of benefits, and how you see as a government we can maybe make benefits more flexible with respect to, for example, somebody going back to work and needing time. I mentioned a different example to the panel before. When my dad passed away, it really hit me six months after the fact. That's when I had the most difficult time—not immediately.

    Also, I just want to throw in that we've certainly learned in the study that even though some people need to go back to work, the workplace seems at times to be the most insensitive place for people going back.

    Can you just give us your comments on how, if you could wave a magic wand, you'd change that EI system and provide more support?

    Ms. Joy, maybe you could start.

    I see the benefits of going through EI, but again my caution is around people who aren't eligible. We are just further marginalizing people who would then have to potentially choose between their grief and poverty. A lot of people in my generation are contract workers and ineligible for EI, so that's something I would caution against. In my dream world, we would find a way to have some kind of benefit for those who don't qualify as well.

    What was the second part of your question?

     About the workplace—

    It was about the workplace, yes, and facilitating the transition back to work with flexibility. I think that's been brought up before, but yes, I support that.

    Thank you. Quickly, Ms. Cadell, could you comment?

     Since you've given me a magic wand, I would do a lot of public education that would include workplaces, so that everybody would have more knowledge about both death literacy and grief literacy, and that there would be an element of choice. If I love my workplace and I do find it supportive, I can go back. Maybe I can go back in a graduated fashion, but I can also take time when I need it, when it hits me months or years later. I've had people in support groups who come for the first time four years after the death to seek support. The timeline is so variable, so I would build that kind of flexibility into my magic system.

    Thank you.

    Thank you.

    Madame Sansoucy is next, please.

     Thank you, Mr. Chair.

    I want to thank all the witnesses.

    Your contribution is essential to our committee's discussion.

    With all due respect to my colleague Mr. Richards' motion, I also want to table a motion that doesn't affect motion M-110. However, I think that my motion is related to all our work.

    My motion is as follows:

    I sincerely hope that the debate on this motion won't lead to the same outcome as the previous motion.

    I could simply share my speaking time right now with Ms. Bayes, who is here and who has travelled from Vancouver to Ottawa. You can determine whether she should be given 15 or 30 minutes.

    I know that we have a busy schedule. However, having heard her, I sincerely believe that her input is important to our committee's work.

    Thank you.

    Thank you.

    Mr. Ruimy is next, please.

    I'd like to thank our colleague for putting through a motion. However, we have witnesses here and we have very limited time, so I move that we adjourn the debate and address our witnesses.

    All those in favour of adjourning the debate?

    Some hon. members: Agreed.

    The Chair: Madame Sansoucy, you have five minutes and 28 seconds left if you choose to use that time.

    Thank you.

    It's a shame that we always end up choosing to not vote. I think that we must have the courage to vote, and that we shouldn't always choose to not vote.

     I want you to elaborate on one of your recommendations.

    I gather that, in your opinion, the employment insurance program wasn't really a reliable safety net for bereaved families.

    We know that only 40% of contributors and 34% of women are currently eligible for employment insurance, which entitles them to 55% of their income. They must have worked enough hours to qualify. The Cormier family suggested 12 weeks. Earlier, Ms. Lihou spoke of 15 to 20 weeks.

    In terms of paid leave for bereaved people, should we move in the direction of the English system, which grants it unconditionally? Based on your recommendation, I gather that we could also ensure that this type of leave isn't included in the employment insurance program since many parents aren't eligible for the leave.

    That's a hard question. From what I'm understanding, you're asking about EI or going with a different system that might mean that everybody would be eligible. I would prefer that everyone be eligible, but I understand that the money is already in place with EI. That's the thing. I don't know how to answer that fully.

    I wish more people would have access to the support they need.

     Okay.

    Do you have anything to add? No?

    I think that you still answered the question.

    We'll need to make the choice when we issue our recommendations. We must ensure that the necessary funds are invested so that all bereaved parents have unconditional access. I hope that this will be part of our recommendations.

    My next question is for Ms. Stevenson.

     In your article, you described the difficulties faced by parents in the first year of bereavement. You mentioned the website, and you also have specific training for people who need to deal with bereaved people.

    I want to hear what you have to say about this. What could constitute specific training for Service Canada officers? How could we modify the current Internet platform to facilitate the process for bereaved parents? Based on your comments, I gather that this would result in major improvements in their daily lives in terms of the grief that they're experiencing.

     I hear that you're talking about two potential users: the parents and the professionals working with the parents.

    I think we're in a time when technology is our friend here. In the work that we did with Le Phare, everything was based on the web. Professionals, for example, were given a password, and then they had access to various training modules based on the existing research. It was very much evidence-based. Again, parents consulted on the program itself. When it comes to parents, it could have a similar format, but obviously I don't see the point of having a password. It should be as readily accessible as possible.

    The pre-existing information on the web needs to be updated and in line with what we know. The reason I read that comment from the EAP website is that when I put my feet in the shoes of a bereaved parent and I read a statement like that, I find it upsetting. I think we need to take a look at what exists and then create something using the technology we have that's easily accessible for people across Canada, be it families or professionals.

    I will also underline that we should offer something to bereaved siblings as well. They're very much underserviced when we talk about bereavement services. Little exists for them, and when we are providing support to bereaved siblings it's often included within the larger program for bereaved children. They're with people who are experiencing the loss of parents, grandparents, etc. I think it could easily be done, and I think we should be targeting the two users: the families and the professionals.

    Thank you very much.

    MP Hogg is next, please.

     Thank you, and I want to thank Mr. Richards for bringing this issue before us. It's certainly been both an emotional experience and an intellectual experience going through this and all the testimony that we've received over a period of time. I've been closely connected with a number of parents in my community who have gone through similar issues and different experiences. The subjectivity that you refer to is certainly part of my experience as well.

    I also appreciate Mr. Richards' sense of urgency in wanting to move this ahead. I think we all certainly feel that. Having heard the testimony again, both the experiential and the research, I share your sense of urgency. I don't want the notion of taking that away to imply in any way that there's any sense from me, and I'm sure from my colleagues, that we don't want this to move forward as quickly as we can to put in place practices, procedures and empathetic, reasoned responses to people in need.

    With the procedural perspective, I keep thinking about Steven Pinker and Abraham Lincoln talking about “the better angels of our nature”. How do we find and want to reflect that? As Canadians, we want to reflect the values that you've highlighted for us as well as many of the values that have come to us through many parents talking about their experiences—and not just parents, but extended family members. As I say, it has torn me and I'm sure torn many of us in many ways, with the experiences that we have in our communities and the experiences that we have individually with these types of death.

    There have been a lot of specific suggestions that have come out, and I again sense the urgency and the desire to get to a place where we have a much better responsive, caring system in our country. Some reference has been made to other countries, other jurisdictions.

    Is there anything out there around the world that is helpful? Each of you has made different references to different specifics. Is there something that we can adapt, some best practices? Each of you has made different references to things. Are there some things that become...?

    I guess I'm looking for the values and then the principles that roll out of those that can then be interpreted into legislation, practice and policy. I think that we need to ensure that we start to invest in some of those and some of the values that we see as Canadians and as caring people.

    This is to any of you who like to respond to it.

    It's not specific to parents, but it's specific to grief and this idea of grief literacy.

    Scotland is making enormous advances in terms of public education and grief literacy. They have festivals. I'm not sure if it was in Scotland or Great Britain where this whole idea of death cafés began. In Scotland, they're taking that farther and they have week-long festivals. They have dinners called “to absent friends”, which are different from a death café.

    I'm not sure if you've heard of death cafés, but they are public events where people come and talk about death, and it's not necessarily specific to their own grief experience. “To absent friends” are organized dinners in small ways where people bring their own personal stories and celebrate their bonds to the specific people who have died.

    They've recently introduced legislation about supporting families financially in terms of funeral costs, because funerals are exorbitantly expensive.

    I would direct your attention to Scotland and would be happy to help provide some of those resources in a brief to the committee.

    I will add to what Professor Cadell was saying by mentioning the movement called “compassionate communities”. Ottawa has signed on to this movement as a city. It's a movement that was started in the public health palliative care community. It is focused on bringing an awareness of life's issues and life's traumas at the community level, the grassroots level.

    There are a number of international cities that have signed on to this compassionate communities movement. There's a charter. As a city or a community, you can follow the charter, sign on and try to kind of create more grassroots compassion at your library, at your local cinema or at your local bookstore to bring this idea of grief literacy to the grassroots community members.

    That would be another level. Ottawa has signed on to this charter. It might be a great place to start.

     Thank you.

    MP Morrissey is next, please.

    Thank you, Chair.

    I have a quick question for you, Ms. Cadell. You referenced public education. We hear that a lot. My question would be simply this: Where and when? Where do you see the public education piece beginning? Is it in academics? Is it at schools? Who does it involve—the young, the old? Who?

    Please make your answer brief, because I have a few other questions.

     Absolutely.

    What pops into my head is bus shelters and buses. We need to be talking about this at all ages. I think buses and public transportation and of course social media—those two follow one another—are places where we can start a conversation. When people are talking about death and dying, we benefit from that as a society.

    Okay.

    I've been listening to the testimony, and to follow up on my colleague MP Hogg's comments, it's been pretty consistent. It's compelling. It reaches out to most people. I've lost several siblings through a similar death. Everybody wants to do something. It's good that the motion was brought forward and that a discussion is taking place.

    When I look back at the notes I've developed, I can see about three themes that have come out in this so far: financial distress at a really vulnerable time, insensitive structures to navigate for people who are impacted, and each bereaved person's case being unique and different. Having those three in place, what would you tell this committee to recommend to government to address these aspects?

    Ms. Lihou, I was very impressed with your presentation. You put some real structure and facts into how to respond.

    Perhaps you could quickly respond to this, because that's what we have to come down to. There's a desire, certainly from this side of the committee, to put forward recommendations that address these issues.

    As a social worker, I would want to see a micro, meso and macro approach.

    At a macro level, I would like to see our country sign on to the compassionate cities charter and give cities resources to enact that, because it really helps to start the conversation, and instead of Heritage Minutes, we could have “Bereavement Minutes”, which would be about destroying the myths. There are so many myths around death and dying.

    At the micro level, I would want to see professionals and individuals being resourced, with not just the bereaved but the folks who are working in the services equipped with skills.

    At the meso level—I'll be very quick, because you're probably getting called—I would want organizations to provide training and support. If the Government of Canada starts providing really excellent bereavement leave to its employees, maybe the rest of the country will follow.

    I'm afraid I have to interrupt you there.

    We have some committee business to get to. I apologize for cutting this short, but I want to thank you for being here and for coming in via video conference to share your knowledge with us on this study.

    We will suspend, go in camera very quickly, and come back to discuss a motion.

    Again, thank you all very much.

    [Proceedings continue in camera]