Evidence of meeting #120 for Human Resources, Skills and Social Development and the Status of Persons with Disabilities in the 42nd Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was parents.
A video is available from Parliament.
Liberal
The Chair Liberal Bryan May
Good morning, everyone. 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 hear from two panels of witnesses. In our first panel, we have Mr. Dyregrov, Professor, Centre for Crisis Psychology, University of Bergen.
You're actually coming via video conference from Norway. Can you hear me okay, sir?
Dr. Atle Dyregrov Professor, Centre for Crisis Psychology, University of Bergen, As an Individual
I can hear you.
Professor, Centre for Crisis Psychology, University of Bergen, As an Individual
It's 10 minutes to two.
Liberal
The Chair Liberal Bryan May
Thank you for being with us, not in the morning—that would be too much to ask—but in the afternoon. .
Here in Ottawa from the Pregnancy and Infant Loss Network, we are joined by Michelle LaFontaine, Program Manager. Welcome to you.
We're going to get started today with seven-minute presentations.
First off, we have Mr. Dyregrov.
The next seven minutes are all yours, sir.
Professor, Centre for Crisis Psychology, University of Bergen, As an Individual
Okay, I will not spend seven minutes, but I will just give a brief background about my work.
I started out as a student in the late 1970s working with parents who lost children to cancer and other serious diseases. In 1980, I started working at the neonatal intensive care unit in Bergen for four years, where my main task was to follow up with parents who lost children at that ward, and also all the sudden infant death syndrome cases. When my work was better known, I was also asked to come and consult with the intensive care unit and the acute emergency ward. Then I went over to the university and spent four years as a senior researcher, and also did my Ph.D., which was named “Parents Who Lose a Child”. That was the subject for my thesis.
In 1988, I started the Centre for Crisis Psychology, which has now been part of the university since 2017, but I've been working clinically with parents who lose children and children who lose parents for all my professional life.
I have also been involved in research following different kinds of deaths. I was very much involved after the terror in Norway, in 2011. We did a study on the effects on parents on losing children. That's been a major theme throughout my work area. I have the clinical experience from meeting and also working with professionals and support groups in Norway, and then the research experience.
One of the studies that I conducted some years back was with more than 300 parents. We filled in questionnaires and also did qualitative interviews on relationship issues and how this affects the relationship. I wrote of several aspects in my professional practice and then also in the research, and feel that I know that area fairly well. I have written about 20 books and 300 articles, not all on the subject of parental loss, but very much in this area.
I'm a clinician at heart and I do what I call the research work, but it's always been the clinical work that has been most important where I'm also able to use the research to better the situation for parents who lose children.
That's what I thought I would say about my background.
October 30th, 2018 / 8:50 a.m.
Liberal
The Chair Liberal Bryan May
Thank you very much, sir.
Now from Pregnancy and Infant Loss Network, we have Michelle LaFontaine, Program Manager.
You have seven minutes.
Michelle LaFontaine Program Manager, Pregnancy and Infant Loss Network
Good morning, and thank you for inviting me to speak with you today.
I have the honour of being the program manager for the Pregnancy and Infant Loss Network in Ontario, often referred to as the PAIL Network.
I have had the privilege of working with MPP Mike Colle, alongside many other dedicated bereaved parents, to advocate for Bill 141, the Pregnancy and Infant Loss Awareness, Research and Care Act in 2015. This bill was transformational for bereaved families in Ontario, and we are forever grateful to him. We are likewise indebted to MP Blake Richards for his work to bring this topic to the federal government, and subsequently to other members of Parliament and on this committee who have come forward with their personal loss stories.
All too often, families like mine are met with silence after their loss. I come to this work not only as a manager for the program but also as a bereaved mother. My husband and I lost twins, Elora and Joseph, in August 2005. We left the hospital with empty arms and broken hearts. We had no idea what to do next, no idea where to get support.
I reached out to both my obstetrician and my family doctor, only to receive a prescription for sedatives so that I could sleep. My husband was on a contract for work and was not entitled to any sick time or leave, so he was back at his computer the day after we got home from the hospital. My employer gave me five days of bereavement leave, and I used up all of my sick time. I was back at work full time less than three weeks after my babies died. I had a caseload of 45 families, all of whom had seen me five months pregnant with twins, all of whom asked what happened.
I learned to answer the question as briefly as possible and change the subject. I learned to keep it together until 4:30, when I got in my car to drive home. I learned the back roads to drive home so I'd be in less danger of crashing my car as I drove through my tears. It wasn't until a friend of a friend who knew someone who'd had a loss gave me the information about the PAIL Network that I began to see ways that I could learn to incorporate the death of my babies into my life.
The PAIL Network is now a provincially funded program in Ontario with a mandate to expand support for families who have experienced the loss of their pregnancy or the death of their baby up to 12 months of age. This includes but is not limited to miscarriage, stillbirth, medical termination of pregnancy, perinatal loss, infant loss and families whose baby dies suddenly and unexpectedly, such as with SIDS.
We also provide education to health care professionals who care for families at the time of their loss, in order to provide them with evidence-based information to foster the provision of the most skilled and compassionate care. The first things we set out to do were to gather information from families and health care professionals in a provincial needs assessment as well as to conduct an online research survey.
Our provincial needs assessment told us that families and health care professionals saw education as the clear priority, as too often families are further injured by their health care experience at the time of their loss. This was borne out in our research survey, too. This research was led by Jo Watson, our director, and the results were staggering.
The summary of the research showed the following: 53% of families did not feel that they were treated with kindness and respect at the time of their loss; 72% did not receive the information they needed at the time of their loss; and 45% were not told of available supports.
Education can be the great equalizer here, both for health care professionals and for government staff who administer programs designed to support families. I know you have heard from families who have been treated insensitively when they were seeking information and financial support from the government, in the same way that the PAIL Network has heard from families who felt that they were not supported and cared for at the time of their loss. Education can change this, education on the unique grief needs of families who have suffered immeasurable loss and are now feeling their way around in the dark, searching for the way forward. It is well accepted in the field of pregnancy and infant loss that the death of a baby is a traumatic loss and deserves to be treated as such, regardless of a clinical diagnosis of PTSD.
Bereaved parents deserve to have their rights protected as they are set forward in a document from Women’s College Hospital in Toronto and referred to by programs across North America. One of these rights asserts that parents be provided with information on support resources that assist in the healing process.
I put to you today that these support resources should include government programs that support a family's ability to access employment leave. A universal child bereavement benefit delivered by trained government staff could make a real difference to families who need time to begin the gruelling work of grieving the loss of their baby.
To that end, I'd like to highlight the impact a national bereavement care strategy could have for families across Canada. Programs like PAIL Network, perhaps set up like chapters in every province, have the potential to address the inequity of support services for bereaved parents in our country. This approach would allow for services to be consistent yet responsive to the individual needs of the provinces.
Funding shared between the province and the federal government would ensure sustainability and undoubtedly demonstrate improvements in parental mental health, access to support and information, and decrease stigma around pregnancy and infant loss. Financial programs that are put in place to support bereavement leave need to be explained to the family, and access to those programs requires that families have trusted professionals to guide them through that process.
Programs like PAIL Network could play a significant role in bridging the gaping hole that exists between a bereaved family and the necessary services to help start them on the path toward hope and healing.
In closing, I urge you to consider recommendations that include support, education and clear guidelines for families who need access to bereavement leave.
From my heart to yours, thank you.
Liberal
The Chair Liberal Bryan May
Thank you very much.
We're going to get started with the first round of questions.
MP Diotte, you're up first, for six minutes.
Kerry Diotte Edmonton Griesbach, CPC
Thanks very much, and thanks to both of you for appearing here.
Professor, it's very interesting that you are involved in the follow-up to the terrible terror attack in Norway. What did you learn about the parents' grief and their sense of loss? Further to that, how would you incorporate that into some kind of legislation to help parents who are grieving a loss?
Professor, Centre for Crisis Psychology, University of Bergen, As an Individual
First of all, we followed up at three time points after the loss, after one and a half years and then after two and three years. We found an extremely high number of parents who struggled with complicated grief reactions, around 80% of them, and more than 60% with more post-traumatic stress reactions to a level where they would be probably be diagnosed.
We thought that had to do with the extreme number of traumatic reminders they had to face in the years afterwards with the court case going on and with the murderer being in the media all the time. We also think the way the 69 youths were hunted and killed at the island played a part in having such a great effect on parents.
Just to be clear, you're talking about grief following all kinds of child loss, not only those at the early stage of life.
Professor, Centre for Crisis Psychology, University of Bergen, As an Individual
We have to think of having systems in place for different kinds of deaths. What we see in disasters and terror—often at once—makes for a governmental response. We have a much better system for reaching out than we have for the day-to-day experiences, but our systems must include both what happens individually and what happens collectively. For example, in Norway we have a very large country as you have, but to travel from north to south is extremely long. You have to build it locally. The local hospitals and the local communities have to have structures in place.
We have done some research on what are the structures needed to have good support over time. There has to be someone with responsibility. There has to be a good connection between primary care and secondary care when you need more expert help, and with the amount that develops—complicated grief, or as it's now come into the ICD.... I don't know if you're familiar with the WHO classification. In June, they included prolonged grief disorder as a diagnosis. In Europe, we follow the ICD, not the DSM, which is in the U.S.A. I'm not sure what you do in Canada. This has recognized that there are people who experience grief and go on to have problems. When you lose a child, the chance of having those kind of problems is pretty high.
In our first study, we found about 50% of those after suicide, sudden infant death syndrome and accidents. It was somewhat lower with SIDS than it was for the two others. There is a large amount that you need to have a system in place to also get an early recommendation or a transfer to specialized services. For every family who loses a child, it affects the family.
One of the things we're seeing now is that while we have a crisis team in every community in Norway that follows up when there's a sudden death, we lack the continuity when there is more than just acute follow-up. You need routines for when somebody takes over, to make sure that families get assistance over time. If you look at the research literature from around the world, several places have systems in place for what happens immediately, but not for the long-term follow-up. That's where it's usually most needed.
You need those structures. You need a system that includes good information. If you look at what parents find most useful, it's very often information—but provided with care. That means that there should be good care around that information. It's not only getting the information. It's getting the information in a caring environment. Combining those two is the best kind of crisis intervention you can have.
Then you need access to parental support groups. I can't remember the name. It's a French name that you mentioned, with the other person appearing for the board here. There's a lot that can be done by putting structures in place in the follow-up, and addressing the long-term needs as well.
Edmonton Griesbach, CPC
I have a very quick question.
How long do you think parents should have before going back to work if they're employed and they've lost a child at the early stage in life?
Professor, Centre for Crisis Psychology, University of Bergen, As an Individual
In my doctoral thesis, I looked at those who went back to work and those who stayed at home. That was mothers in the 1980s. It was mostly fathers who went back to work or who were working.
Those who went back to work soon functioned better than those who stayed at home, but that depends on the work environment. You need to have a work environment where you have the possibility to take breaks, and that you're well cared for in that system. If not, it's worse to go back to work. It's very individual.
My advice would be to return to work as soon as possible, but adjust the work. It depends on what kind of profession you have. There are a lot of things that go into that.
Liberal
Wayne Long Liberal Saint John—Rothesay, NB
Thank you, Chair.
Thank you to our witnesses this morning.
Ms. LaFontaine, first, I'm so sorry for your loss. I'm so sorry for the experience that you had negotiating and moving forward after that loss. I had a friend in a similar situation many years ago.
Can you touch on the experience you had with Service Canada when you, unfortunately, had to start that process of trying to get support?
Program Manager, Pregnancy and Infant Loss Network
Sure. My answer will be brief, because I wasn't aware that I was eligible for any leave at all through Service Canada. My loss was at 20 weeks and five days, which was just below some of the cut-offs at the time, so I wasn't eligible for any government leave that I was aware of—
Liberal
Wayne Long Liberal Saint John—Rothesay, NB
Just let me jump in. I think that shows, and I think it goes without saying, that most new parents are young adults. Most new parents are in their twenties. Things change, and maybe most now are in their thirties, but they're still young adults. They're learning. They're building their networks, and they may have just been married or bought a house or what have you. Financially it is one thing, but just emotionally too they're young and they don't know where to turn. They don't know which way to go especially in times like this.
There was a presenter last time. One of the things that came out was that there's PAIL and different agencies and support organizations across the country, but there's one here and there's not one there. You mentioned in your presentation that perhaps PAIL could be across the country so there would be more uniformity in delivery of support. I happen to agree with that.
Can you elaborate a bit on how you would see that going? Obviously M-110 is about our trying to find a way to change the way it's been in the past and to do something good as government. What can we do?
How would you envision government support for that? Do you think it's more important for government to support organizations like that uniformly across the country in each province, or is it more important for governments to support the parents more financially? How would you weigh them? Obviously they're both important. Can you elaborate a little bit on that?
Program Manager, Pregnancy and Infant Loss Network
That's a hard choice to make, if I'm faced with that choice. Also, you made the point about parents not knowing. We didn't even know to ask. There was nobody to help us learn what might be available to us.
To that end, I wonder whether, if we had more support networks such as PAIL Network across Canada, we'd be able to provide parents at least with the information about how to access those supports.
Liberal
Wayne Long Liberal Saint John—Rothesay, NB
You mean not a government agency but just the support of individual agencies with more uniformity across each one.
Program Manager, Pregnancy and Infant Loss Network
That's right. I feel that for the PAIL Network, we have been able to make such incredible strides in Ontario looking at peer support for families and education for health care providers. Upcoming links on our website will have information about employment leave and information to that end.
I do believe that if there's information for families, that information will give them what they need to be able to move forward and to access leave and access the information they require.
Liberal
Wayne Long Liberal Saint John—Rothesay, NB
Thank you for this.
The Cormier family was at our first meeting. They proposed 12 weeks of benefits for parents who have lost a child.
Do you believe that's an appropriate length of time? What length of time would you like to see for the benefit?
Program Manager, Pregnancy and Infant Loss Network
I believe that 12 weeks would be an appropriate benefit for an automatic universal bereavement benefit. I'd also like to see that being paired with, not combined with, other leave that your particular employer might be able to offer you. If you are able to also access a stress leave or a medical leave, if you are able to also access bereavement leave from your employer, that could stretch it out. I think 12 weeks would be the bare minimum that we would recommend for families.