Human Resources Committee on Oct. 30th, 2018

[Dan Ruimy, Liberal, Pitt Meadows—Maple Ridge, BC]

Thank you.

[The Chair, Liberal, Bryan May]

Thank you very much.

Thank you to both of you for appearing before our committee today and contributing to this study.

We will suspend briefly so we can bring in the next panel.

[The Chair, Liberal, Bryan May]

Good morning, everyone.

We're back with our second panel this morning. I'm pleased to inform you that we are joined here in Ottawa by Francine de Montigny, Director, and Chantal Verdon, Researcher, Centre for Studies and Research on Family Intervention, Université du Québec en Outaouais. Also joining us via video conference from Calgary is Gillian Hatto, Founder of Hazel's Heroes Society.

We're going to start it off with Francine and Chantal.

The next seven minutes are all yours.

[Dr. Francine de Montigny, Director, Centre for Studies and Research on Family Intervention, Université du Québec en Outaouais, As an Individual]

First of all, thank you very much for inviting us over. I will be speaking in French, because I can probably put an extra minute in my talk, and since I could entertain you on prenatal bereavement for probably 45 hours, I'll try to make it short and sweet.

[The Chair, Liberal, Bryan May]

Take your time. We have lots of time. The interpreters are going, “Oh, boy”.

[Dr. Francine de Montigny]

Just wait until I speak in French.

I hold a Canadian research chair on family psychosocial health.

I am the senior research fellow at the Fonds de recherche du Québec en santé.

As well, I am the Director of the Centre for Studies and Research on Family Intervention. Chantal is co-P.I.

We have done about seven research works mostly over the last 15 years, but I've been doing research for the past 20 years on prenatal bereavement. We're both clinicians. We've been doing prenatal support groups for the past 20 years at Université du Québec en Outaouais. We keep seeing families every month, and we also hold groups for the next pregnancy. All that is volunteer work.

I will be providing an overview of perinatal death and talking briefly about the impact on parents' mental health, marital relationships and child development. I will also address the effects of the lack of recognition of bereavement in society and the workplace, as well as the economic consequences of the cost of absenteeism/presenteeism. Lastly, I will discuss what Canadian families need.

It is estimated that one in five pregnancies ends in early or late perinatal death. By the way, I encourage committee members to ask why I say “it is estimated”. In Canada, that represents around 100,000 deaths a year.

Health and social services for bereaved families are uneven across provinces, as well as within and between regions. That means a parent can access a given service if they live in Laval, for instance, but not if they live in Montreal. Consequently, they have to go to another region in order to receive the service.

In addition, access to paid parental leave is unequal between mothers and fathers, and varies for mothers depending on the province of residence and the length of pregnancy. I also welcome any questions on that point.

This contributes to the non-recognition of perinatal bereavement and, in our view, reduces the father to the role of progenitor and financial provider. This perpetuates the stereotype that the father's involvement in the family project is limited to conception and excludes any emotional commitment.

Yet the consequences of perinatal death are real in the short and long term. The committee has heard from families. Both parents experience a heavy loss and intense grief. Perinatal death, and subsequent bereavement, have deleterious effects on the mental health of women and men up to five years after the death. That includes persistent depression, anxiety and grief. The research refers to post-traumatic stress and somatization.

In the course of our research, we have met with thousands of parents over the past 15 years. Women talked about having suicidal thoughts, 16% in fact. We are currently following up with parents as part of another longitudinal research study. We learned that some fathers have suicidal thoughts after the birth of the next child. Symptoms persist during the next pregnancy and even after the birth of a healthy child.

With respect to the conjugal relationship, there is increased risk of marital tensions, separations and divorces. Although some couples are able to come together and grow stronger after such a tragedy, it depends greatly on the support they receive and the way they deal with the event together. When the father goes back to work on Monday morning, after the miscarriage or loss, and the mother is home alone crying, it's easy to imagine the tension that can result.

There is increased risk of mental health problems such as anxiety in subsequent pregnancies. There is increased risk of other perinatal deaths. During a first pregnancy, a 25-year-old woman has a one in five chance of experiencing a miscarriage or perinatal death, and that goes up to a one in four chance after the first event. The likelihood of the mother experiencing multiple perinatal deaths over a lifetime therefore increases.

Both international and Canadian studies have examined postnatal effects. In Calgary, babies born to mothers who were initially depressed, not necessarily further to a death, were more likely to develop depression later on. Therefore, the research points to an immune disorder that is genetically passed on from mother to child during pregnancy. If the mother is carrying a girl, she will pass it on to her daughter, who will in turn pass it on to the next generation. That signals an intergenerational transmission of mental health disorders, and there are costs associated with that.

Certain postnatal effects have also been identified. Some of our American colleagues have studied cohorts of parents who have experienced trauma, including death, over a period of 25 years. They observed that babies with depressed parents have an increased risk of depression and of internalized and externalized disorders in childhood and adulthood. It varies depending on the parent's gender. I can talk more about that later.

The effects of the lack of recognition of bereavement in society and at work are experienced in medical, family and social spaces. The work space is the one where bereavement is the least recognized. I can come back to that afterwards.

The silence surrounding the suffering and distress of grieving men, who, like women, must learn to live with the death of a baby, forces them to return to work when they are physically and psychologically shaken. The result is a high rate of presenteeism or absenteeism.

I will now get right into the cost of presenteeism and absenteeism. Canadian estimates indicate that productivity costs associated with mental health disorders are $17.7 billion annually. The costs of presenteeism are usually 5 to ten times higher than those of absenteeism. Symptoms of depression, grief and anxiety are associated with lower productivity, problems with concentration, poor problem-solving and decision-making skills, as well as more workplace accidents.

Direct and indirect economic consequences arise from the increased use of health and social services. Without the necessary support at the time of the event, people repeatedly access the health care system for the same event. The consequences on children already in the family and those born afterwards are not yet well known. The same is true of the consequences on extended family—which the gentleman spoke about earlier—including grieving grandparents. Similarly, the consequences on families of diverse cultural origins are not well known. We know very little about what they experience.

What families need—mothers and fathers alike—is to have their grief acknowledged. This can be achieved through social awareness-raising campaigns, workplace programs and bereavement leave for both parents. They need to be supported by sensitive and competent staff who recognize their cultural specificity and their bereavement pathways throughout the continuum of care. Programs not only need to be implemented, but they also need to be evaluated. Once programs are developed and put in place, it is not known whether parents derive any benefit. We need more accurate statistics to tell us the number of early and late deaths. We also need longitudinal research studies so that we are not always relying on research findings from other countries. Canada has a cultural specificity, and we lack information on the bereavement pathways of families and the long-term repercussions because the research hasn't been done.

We also lack studies on the impacts of bereavement on work. A qualitative study is coming out soon, but we don't have any quantitative studies. We have little in the way of studies. We conducted a small study on cultural specificity as it relates to family support, but we need programs to be evaluated. Bereavement groups, among other services, have rarely been evaluated. We don't know whether they should comprise two volunteer parents or a professional together with a parent.

Thank you.

[The Chair, Liberal, Bryan May]

Thank you.

Up next we have Gillian Hatto, Founder of Hazel's Heroes Society.

The next seven minutes are yours.

[Gillian Hatto, Founder, Hazel's Heroes Society]

Thank you.

On May 29, 2014, I gave birth to my first child, my daughter Hazel Rose. She was born healthy, happy and perfect in every way. We had three incredible months with her in our arms, and they were the happiest three months of our lives. There was no sign, no warning and no thoughts of her leaving us so abruptly as she did, but on August 31 she fell asleep and never woke up again.

That day will remain forever etched in my mind. Thinking about it makes my head start spinning and my stomach feel nauseated even four years later. What we went through that day and in the coming weeks and months, no person should ever have to go through. It's something that is impossible to imagine unless you have also lost a child.

We had to answer questions that hadn't even entered our minds, and we didn't know if we were making the right decisions. Would she be buried or cremated? What did we want her to wear? Where would she stay—in a cemetery or at home with us?

Then we had to plan a funeral. My husband Gareth and I created a slide show of our most treasured pictures ever. We had to choose a venue and food and hot beverages to serve, and we had to prepare speeches that would somehow convey to others how much we loved and missed our baby girl. I could barely brush my hair, much less be present in front of 100 of our closet friends and family members, but I had no choice, and even though Hazel's heart had stopped beating, mine continued to whether I wanted it to or not.

Somehow the world kept going on all around me, but I remained in a fog of heartache and grief. I didn't want to think of anything beyond memories of holding my gorgeous daughter. Early on, I began seeing a grief counsellor through the Alberta Health Services. I needed an outlet and someone who could help me make sense of the new emotions I was carrying. I had no idea that grief could bring on such an onslaught of scary feelings.

I didn't recognize the person that I had become, but I also couldn't remember the person I used to be. Gone was the outgoing, happy, talkative and confident woman that I once was. I was afraid to be in public. I was filled with intense social anxiety, and I was afraid of seeing reminders of what and who I had lost, but the reminders were everywhere: pregnant women, happy families and babbling babies. There were land mines at every turn.

There were so many things that I didn't want to think about during those early days after tragedy struck: money, work, exercise, cooking and eating, to name just a few. Going back to work was the last thing I wanted to think about, yet it became a topic of conversation much more often than I liked.

For those around me who simply didn't understand, they wrongly assumed that going to work would be a good distraction for me. My profession is teaching students with special needs. I don't have an office where I can close the door and cry when I need to; rather, I am surrounded by dozens of people all day long, and I need to make important decisions regarding the needs of the students I support and the assistants I supervise. A distraction was the last thing I wanted.

I felt so isolated, so alone in my grief, that I needed to understand it and work through it to feel human again and to find hope. I personally do not believe that there is enough understanding about grief, especially child loss, and rarely do people know how to support grieving parents. Often things are said or done with good intentions but have terrible results, often causing more harm than good. To be back at a workplace within weeks or even months after child loss means being faced with questions about your family from those who do not know you are grieving; listening to others talk about their families and children; and, being given platitudes on how to get through it. For me, it simply wasn't a safe place to be.

My husband and I researched online what we were meant to do in regard to my EI, my work and our financial situation, as no one at the funeral home or the hospital told us or even knew what we were supposed to do. In our research, we came across a benefit through EI for the parents of murdered or kidnapped children, which I know has recently been changed to parents of young victims of crime. I read that over and over and kept looking for something for parents who have lost children in other ways as well, but I couldn't find anything. I was in disbelief and assumed that the government thought that if a child was kidnapped or murdered, it was perhaps a worse result than a child dying from an illness or from undetermined reasons, and that somehow those parents deserved support but we did not. Unfortunately, it's the same result: a parent will grieve that child until his or her dying day, no matter what caused that child's death.

Just days after that, I found out that I had to go into Service Canada to cancel my EI benefits and ask about my options. I was told that there was a good chance I would qualify for sickness benefits. I was a bit confused, as I knew that was different from the support given to parents whose children had been murdered, but sickness benefits didn't sound right either, as I wasn't sick and I wasn't injured. I was broken and grieving, and I didn't seem to fit into any box offered.

However, I did feel a sense of relief that I would qualify for the benefit, even knowing that 15 weeks would not be long enough. I now know that I only qualified for the sickness benefit because I hadn't needed to access it during my pregnancy with Hazel. In the end, I did not go through EI but was instead put on short-term disability leave through my work and then eventually long-term leave. I ended up being off work for exactly two years. I'm grateful that as a teacher I had access to these benefits and was not forced to go back to work when I was not physically or mentally able to be there.

Within weeks of Hazel's dying, I received a notification in the mail from Service Canada that I had been given extra money through the child tax benefit and I owed it back to the government in a timely fashion. It was approximately $550. I had no idea that I had been overpaid and would have to return such a large sum of money.

There was no option given for paying online, and I even called to see if this could be a possibility, as I had been avoiding being out in public at all costs. Everywhere I went there were triggers, and I wasn't emotionally ready to make idle chit-chat or safely be behind the wheel of a car. Unfortunately, the only option I was given was to go to the bank in person. I dreaded it, as I had been there just weeks before setting up an RESP for Hazel. It was within walking distance from my house, so I forced myself to go as I didn't have much choice.

The teller recognized me immediately and asked where my beautiful baby was. I stared in silence and somehow got it out that she had passed away. The teller frowned and responded by telling me that her niece had had a recent miscarriage and that she understood what I was going through. I stood there in disbelief, then walked out of the bank as fast as I could and became physically ill while customers moved around me. Needless to say, I haven't been back to that bank since. I hope, in the four years since losing Hazel, that parents are now able to pay back this amount online, or better yet, not at all.

Two years into my grief I started a foundation in honour of Hazel called Hazel's Heroes. We provide healing retreats to mothers who have lost a child under the age of 12, at no cost to the family. Through Hazel's Heroes and the various support groups I am part of, I have met dozens, if not hundreds, of bereaved parents. Many of them have shared their anxieties around returning to work and struggling to make enough money with no pay cheque or benefits. It's simply heartbreaking. Grief doesn't just affect you emotionally; it affects every ounce of your being. What helped me the most in my grief was not returning to work and being distracted, but rather putting time into grief work such as counselling, support groups, journaling and being close with others who understood what I was going through.

It's so important that as a society we recognize the need to give bereaved parents the opportunity to sit with our grief, find new ways to parent the child no longer in their arms and find their new normal. The government can help make this happen, and I hope this committee is able to find a solution to better supporting parents after the tragic loss of a child.

Thank you.

[The Chair, Liberal, Bryan May]

Thank you very much.

We're going to start questions with MP Diotte, for six minutes.

[Kerry Diotte]

Thanks to the both of you for appearing, and to Ms. Hatto especially. From the bottom of my heart I feel for you. I'm glad you can present to us, because it's very useful to hear such poignant testimony.

To that point, what can we do so that no parent has to go through what you've gone through? What would you like to see in terms of programs and supports through the federal government?

[Gillian Hatto]

As I mentioned in my testimony, the first thing that I thought would be the easiest is to not expect parents to be out in public and not require them to pay that child tax benefit back in person at the bank. It should be online. I wish the government could stop this right away, so that parents don't find out they owe so much money after they've lost their child. Some parents I know didn't find out until weeks or months after and owed so much money that they didn't have it in their bank accounts. I think that's a cruel punishment.

I wish there were benefits such as the one going through, Motion No. 110, so that parents don't have to return to work right away. I know there is the sickness benefit, but as we've seen from previous testimony, that's not available to every parent if they've taken medical leave throughout their pregnancy.

For me, finding out there was something for children who died from other circumstances.... I think parents should see there's a benefit specific to bereaved parents, so that we know we are supported by the government and that ours is a separate type of loss. I think if parents haven't accessed the sickness benefit, they should get that as well as a bereavement benefit, because no time is long enough in terms of returning to work. If parents choose to, that's wonderful. For someone like me, and many other parents I know of, it took well over that 15 weeks. In the end, I took two years.

There are so many other things the government could help with, such as supporting those NGOs and giving parents a retreat such as Hazel's Heroes to come together and meet other families. We've had so many parents come to our retreats who have never met another bereaved parent in the five or six years of their grief. That's heartbreaking. Parents feel so isolated in their grief and loss. To meet other parents who've gone through something they've also gone through helps them feel supported, less alone and able to continue living, find a purpose to continue breathing.

[Kerry Diotte]

Thank you.

Since you are the founder of Hazel's Heroes, what stories have you heard from other parents, regarding their inability or the gaps they've seen on the federal side?

[Gillian Hatto]

I think one of the biggest is the parents who found out way too late after they found out their child had passed away, that they owed so much money to the government.

I've had so many people come to the retreats. Right now the retreats are focused on mothers who have lost a child, and a lot of the mothers who come are single. They don't have that double income. They don't have an employer who gave them access to longer leave. In the end, they had to quit their jobs because they went back to work and had emotional and mental breakdowns.

I think that struck me the hardest: thinking about their being back at work, struggling to be there, hearing other people talk about their children and families and having to sit through that or in the end leave and not make any money, because that was what they had to do, making money but hearing such difficult things.

Yes, I've heard a lot of terrible stories where families had to survive on such measly incomes and not make it through, because they already took their sick leave and had to return to work. Those are the ones that most impacted me.

[Kerry Diotte]

It must be terrible to learn that you think you've had a benefit, and then suddenly you have to pay it back.

[Gillian Hatto]

Especially when in that first year after having a child and you're given maternity leave, you expect to be on leave for those 52 weeks. To be told right away you need to return to work or that you owe that child tax benefit back right away.... There's almost a dirty feeling around it for parents, having to reach out to the government, to EI, and find out what their options are. You feel you're being judged or that you're asking for something you don't deserve. That's the last thing we should be making bereaved parents feel. They shouldn't feel they're forced to go back to work because now they don't have a child to take care of. But they do have a child to take care of. We continue parenting those children. They don't go away.

Hazel will remain in my heart forever, and I parent her through many other things now, having Hazel's Heroes. I'm the vice-president of SIDS Calgary Society. I know many other parents who continue to have lasting legacies for their children, and they parent them in other ways. We still have our full-time work. We still have our other children, but to be given a bit of time, a bit of that emotional support, that financial support from the government, can make a very big difference in the life of a bereaved parent.

[Kerry Diotte]

Thank you so much.

[The Chair, Liberal, Bryan May]

Thank you.

MP Ruimy, you have six minutes, please.

[Dan Ruimy, Liberal, Pitt Meadows—Maple Ridge, BC]

Thank you for being here today.

I'm going to start with Ms. Hatto.

There's no easy way to have this conversation. With a lot of the topics we're hearing about, the jurisdictions fall all over the place, whether they're provincial, municipal, federal. Then you have the red tape somewhere along the line, whether it be Service Canada or whatever government organization, may not understand what's going on. What can we do as a committee that can cut away at that red tape?

As I mentioned in the previous panel, we hear that the benefits stop the week of the passing. An easy fix would be a grace period. We've heard this. The federal government can perhaps look at this. Mental health is another thing. One thing I think we all agree on is the value of the NGOs, the non-profit organizations like yours, and how they are funded. How can we help? Do you get any provincial or federal funding for Hazel's Heroes?

[Gillian Hatto]

No, there is no funding. It's all through donations.

[Dan Ruimy, Liberal, Pitt Meadows—Maple Ridge, BC]

Okay. That's interesting because it's difficult. You mentioned you went to the bank, and people's first reaction was, “Oh, this is uncomfortable”, or to say, “My brother went through this”, or “My niece went through this.” I don't think that's something you can legislate. That comes with awareness. That comes with education. But it's still awkward for people because they don't know what to say in a public setting.

For me, I think, there are two things. How can the federal government provide financial assistance and cut away that red tape? That's critically important. You had mentioned that they said you owed $550. It's silly that it's an automatic response that says you have to pay it in a timely fashion. In the work that we do in our constituencies, it's easy for us to pick up the phone and talk to Service Canada, and say, “Look, this is what's happened,” and they will.... So there's a gap there. Something is just not right, and we have to figure out how we can address that.

You had mentioned that you were off for two years. In the previous panel, the professor said some people come back a lot quicker. Sometimes it's not good to send people away for too long because they're not interacting, and what have you.

How could we address that? There are inconsistencies in trying to put a system together where you might need two years, but somebody else who doesn't have any benefits whatsoever doesn't get that. Can you speak to that a bit?

[Gillian Hatto]

Well, I definitely think it's individual, just as I know grief is individual. For my husband, he returned to work three weeks after the loss of Hazel. I like the idea with Motion No. 110 of at least a bit of a grace period. It's just a bit of time that the government is saying, “Listen, we know that returning to work right now is not the best thing for you.” However, people also have the choice to return to work and to not take that benefit. That would be a choice for them.

For me, I did take those extra two years. I think it really depends, for the families, what choice of work they're in. For one, I actually had a subsequent child in those two years and I would not have been able to return with a newborn baby. I do think that every situation is different, but I think that providing a little bit of a grace period....

I don't think that saying 12 weeks or 15 weeks or whatever number of weeks is saying that you're going to get over this or be done with your grief, but I think it's a way of showing some support for those families to access some of those supports that are hopefully available.

I'm quite lucky being in Calgary. I'm finding that in being part of Hazel's Heroes and hearing from families all across Canada, even in the States, I hear about the different supports offered in their cities and their provinces. I have been very lucky in Calgary to receive free grief counselling through the Rotary Flames House. I know that's not even an option in some of the capital cities across Canada. I think that's an area that we need.... I don't know if the government could look at how it's supporting some of the mental health side of things.

As I said, it's even just a simple thing. Obviously, the teller didn't know what to say, and that's very normal. People don't know what to say when it comes to grief and child loss. I think that forcing a parent to go out in public in those early weeks of grief seems like a cruel and unusual punishment. I almost wanted to wear a sign that said, “My child just died”, just so people could understand not to even ask me, “How are you doing today?” Someone at the grocery store was packing my groceries and saying, “How are you today?” I couldn't even respond, “Fine.” I would just stare and want to be sick right there. The amount of extreme social anxiety you get, I can't even explain. I had no idea that was something that would happen.

To tell people that they can't pay this online, that they have to go into a bank where they'd just set up an RESP for their child, that adds a lot of cruelty. I think that could be easily resolved by there being an online option. That's one simple thing that I think should be changed quickly.

[Dan Ruimy, Liberal, Pitt Meadows—Maple Ridge, BC]

Thank you.

[The Chair, Liberal, Bryan May]

Next is MP Sansoucy.

[Brigitte Sansoucy, NDP, Saint-Hyacinthe—Bagot, QC]

Thank you, Mr. Chair.

I'd like to thank the witnesses.

Ms. de Montigny and Ms. Verdon, the committee has to make recommendations as part of its study. I'd like to discuss the funding of the organizations working on the ground, doing excellent work with meagre resources.

One of your studies on the services available to families after a perinatal death makes something very clear: stakeholders and parents know little about the resources that exist.

That study also highlights an issue that's been raised by many witnesses, and we've just heard it again. Following the death of a baby, stakeholders do not necessarily have all the answers or know where to refer parents.

At our last meeting, I was surprised to learn that Service Canada did not offer parents any tools or assistance, not even to refer them to appropriate services.

Given your research and expertise, how do you think the federal government can better support organizations so that they, in turn, can help parents, on the one hand, and promote their services, on the other? The services are out there, but people don't know about them. Is that merely due to a lack of funding? Could an organization like Service Canada be a portal where people could turn for information on the various services?

I'd like to hear from both of you about funding, referrals to services and access to information.

[Dr. Francine de Montigny]

The study you're referring to is from 2010, but the situation is still the same. If we were to do the same study today, we would see that the services are still not well known and are poorly spread out throughout Quebec and elsewhere in Canada.

The provinces that provide the most support after perinatal death are Quebec, Ontario and British Columbia. New Brunswick also provides some services.

There is not only one solution; it's multiple solutions. Yes, Service Canada can answer questions, but it takes training. You need to train those people who answer the phone.

We're in a death denying society. In that society there is no space for death, so it's very easy to go.... When anybody who loses a close one goes back to work, for a day or two, people will ask, “How are you?” The week after, they expect the person to be just as productive as if nothing happened in his or her life.

Death is unsettling. It's unsettling when it's a child. It's unsettling when it's a parent, when it's a sibling. We need to have space to go through these emotions, to integrate them in our lives so that we can end up being more productive.

Going back to work too quickly when you don't feel like going back to work will only mean that you're going to be there, present, and not doing much, just acting. Some fathers shared that they lost their job after losing their baby because they went back to work too quickly and they were not really as passionate about their work or as productive as they used to be.

We need to have this time, and the time is different for everyone.

I disagree with Dr. Dyregrov that they should all go back to work quickly. Some of them need to go back to work quickly, but we also find in the parents who we support that when the men go back quickly.... The women oftentimes will have some kind of leave because they gave birth and they have postpartum symptoms. Even though the pregnancy was only 16 weeks and they don't have the benefits, they have postpartum changes in their body, so they can produce milk, and they'll have different kinds of hormonal changes that they go through, so they will more easily get medical leave from their physician than the men will. When the men go back to work, they distance one another in their relationships.