Human Resources Committee on Oct. 30th, 2018

[Michelle LaFontaine]

The social help we could offer to families would certainly do a lot in breaking the stigma that's associated with pregnancy and infant loss. I feel that families would talk more about their losses, and would be better accepted by their peers and by society if it wasn't such a taboo subject.

If we had social supports in place that were well known, if we had emotional supports in place that were well known in the same way the Canadian Cancer Society is there for you when you have a cancer diagnosis.... Families and members of society should be able to know, if you experience a miscarriage or an infant death, where you should direct families to attend.

You are right that there definitely are many people who can hear you talk about your personal story and not be able to accept it for many different reasons. We feel that education, again, would be the key to addressing that issue.

[Ramesh Sangha, Liberal, Brampton Centre, ON]

In families we have no problem, because we provide support to each other in the extended family. When we are alone, when somebody who is grieving is alone at home, and at the same time when husbands go back to work and the wife is at home sitting alone, she has big problems. Do you think money is the only criteria which can help, or are there other ways to take care of this problem?

[Michelle LaFontaine]

I agree with you. When you are by yourself, the isolation can certainly increase, and being connected to social programs, peer support networks, online support can certainly start to alleviate it. Unfortunately, it's not always the case that your family is the most supportive. Oftentimes, we hear families talk about their family members who are not able to support them at the time of their loss. It's too difficult for everybody to talk about it, so they do have to reach outwardly.

They do have to find who they can talk to in their communities. The idea that we just throw money at the problem, I agree with you, is not the solution. Certainly, money to support the social support programs that we could put in place will assist families to not experience that isolation, whether it's the partner who goes back to work or whether it's the person who gave birth that goes back to work. If we can have the conversation in our society that allows families to expand on their grief, to know that anyone they talk to can be a safe place to land, would be a great move forward.

[Ramesh Sangha, Liberal, Brampton Centre, ON]

Thank you, Chair.

[The Chair, Liberal, Bryan May]

Mr. Richards

[Blake Richards, Banff—Airdrie, CPC]

Thanks, Chair, and thank you so much, both of you.

Michelle, I'll start with you. First of all, thank you for the courage that you've displayed. You talked about your personal story and how difficult it was for you to struggle to get through the workday. You also talked about making the choice to take the back roads home because you knew, at that point, how much the day had taken out of you. To take that and turn it into something where you're trying to do something to help others not to experience what you had to experience takes a lot of courage. I thank you for that.

I want to ask a couple of questions. First of all, obviously we've heard all kinds of stories about people who've had to tell their story and experience over and over again to bureaucrats, to Service Canada agents, to the bank and so forth, to try to deal with benefits or with various other things that go along with this, often without a lot of information, as you've mentioned.

Before I get to that, I want to ask how important you feel it is that people have access to someone who really understands their situation. For example, when they're dealing with Service Canada, how important is it for there to be people who are dedicated agents they can deal with who really understand what these people are going through and what they're dealing with so that there can be the proper response? Is that something you would say is quite important?

[Michelle LaFontaine]

Yes, I think that's incredibly important.

Without the type of education needed to be able to provide the information in a compassionate way, those experiences could just serve to further traumatize the family. We did hear from lots of families who, when they went to seek support or to get information, were told things that are just unconscionable. I don't think it's because people don't care. I don't think it's because they are trying to destroy that family's day. I think it's because they lack the education they need to be able to provide that service with skill and compassion.

[Blake Richards]

Along those same lines, at one of the October 15 events that I attended this year, I met a young guy named Timothy. I think it was about a month previous that he had just experienced a loss. You could still see the pain on his face. He was still incredibly traumatized by the whole situation, and his story, when he told me, was very much what you just described.

First of all, they were put into a maternity ward while they were losing this baby, and they were seeing the joy of everyone having a child. No one did that on purpose, but that was a very difficult thing for him. Then they were just sort of told at the end, “Well, this is really common. Don't worry about it. It'll be fine.” Obviously that really hit him hard as well, and then they were just sent home with no information. They had no idea where to turn or what to do next.

I want you to speak to the importance of information being available to people on where to turn, but also the idea that there be some kind of assistance. You mentioned the automatic, universal.... I want you to speak a little bit to the importance of that because the last thing I think we want to be doing is putting people through experiences that are going to further traumatize them when they're trying to deal with their grief.

Can you speak to the importance of that automatic and universal nature of something that would be provided for parents?

[Michelle LaFontaine]

I think the automatic and universal nature of that type of support would first validate that this is a loss that deserves this type of attention and deserves to be supported by our government.

When we offer families information at the time of their loss about support that is available to them, that doesn't necessarily mean all families will access that support immediately. It's of course up to them to access it. However, just telling them that the support is available lets them know that many families need support, just like you might need support. It's important to normalize the grief experience and validate the fact that we know you're not going to be okay to go back to work right away, and we have that taken care of. Families will look to their government for that kind of leadership and that kind of support. A universal bereavement benefit would certainly do that.

[Blake Richards]

Thank you.

There is another thing I want to ask you about. In your opening remarks you mentioned PAIL, and the fact that you deal with perinatal loss, SIDS, and other losses of a child up to the age of 12 months. Can you speak to the difference in the kind of grief experience in those situations as compared to other losses, and why a decision was made in creating PAIL to deal specifically with perinatal loss and, in that first year after birth, with SIDS and those types of instances?

[Michelle LaFontaine]

The unique grief needs of families who have experienced the loss of their pregnancy or the death of a baby certainly require a different approach at times, we feel. Again, to be clear, our support is not professional support but peer support. All of our support is one-to-one phone support or circles of support that happen in over 23 communities in Ontario, where you can come and sit with other families who have experienced loss.

We do find that when families are closer to their bereavement, they like to connect with others who have experienced a loss very similar to theirs. For instance, if my loss was at eight weeks, I'd like to speak to a family who also had a loss at eight weeks. If I lost my baby at three months of age due to SIDS, I'd like to speak to a family who experienced what I did. The health care journey is different. The experience of grieving for what a baby was going to be, where you had hopes and dreams, will be quite different from the experience a family will have with an older child, where they're looking back at the memories they had with them.

Families who lose a pregnancy or a baby don't yet have those memories to build. However, they certainly have an identity that they have created for themselves as a family. We know that attachment begins long before birth. If you're a family that has been very, very much wishing for this pregnancy and for this baby to come, the loss also means that you are losing the life you wish you could have had with them.

I think that's the main reason we decided to keep things somewhat restricted in that way. We often refer the families who don't fit that criteria, who have a loss of a child over the age of 12 months of age, mostly because we don't feel they would feel represented in the groups we offer and with the support we offer.

[Blake Richards]

Thank you.

[The Chair, Liberal, Bryan May]

Thank you very much.

Next is MP Ruimy, please.

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

Thanks very much to both of you for those presentations; it's so early in the morning where you are, Professor.

Look, this is a tough topic to talk about. We're all empathetic when it comes to the losses that people experience. Indeed, people have losses every day. I lost my dad last year. We had to fly to Montreal. He was in a coma for a week, and we had to wait for him to die. We really didn't know what was going on either. An hour after he died, the Jewish community rolled in with this big cart. They had coffee and what have you. That was one way they were able to show their support.

You mentioned the peer support. There are two things that are going on here. There's Service Canada, which I'll talk about in a moment, but then there's the hospital services. That's a question I'm trying to come to terms with myself. You have your NGOs. You have your provincial, you have your federal, and you have your peer support. What's triggering all this? What's happening, and how are these things...?

First, did you start this organization?

[Michelle LaFontaine]

No. It's been around for about 25 years.

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

Can you tell me if there is any governmental funding in that program?

[Michelle LaFontaine]

There is now. After Bill 141 passed, we became fully funded by the Ministry of Health in Ontario.

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

That's good, because those are some of the things that government can do for a more direct approach.

When we talk about Service Canada, what we've been hearing is more disconcerting to me. If you're on EI, then the week your child passes your benefits end. We heard the stories, i.e., you're not applying, you don't send in the documents, now you've overpaid into the system, and now you have to pay it back. That generally comes quite quickly.

Can you talk about any of those experiences, either your own or those of people you've met? Is it something that you're hearing is going on?

[Michelle LaFontaine]

Absolutely. It's not top of mind for families to let Service Canada know that their baby has died. Oftentimes, there is no one around them to tell them to do so. That would be some of the education we would need to give to funeral homes, to health care providers, and anyone who is able to support the family at the time of their loss. Letting them know that this is something that needs to be triggered with Service Canada would be beneficial.

For families, I feel, when the child has passed, it would be very simple, in my opinion, to be able to trigger that benefit to roll into a bereavement benefit so that we wouldn't have families who have to pay it back. We certainly hear from families all the time who have experienced significant financial hardship as a result of the loss of their baby. Just not knowing where to go and what to do has been the culprit.

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

I'm still trying to understand how this gets triggered because most families don't want to talk to Service Canada. Yet, somebody needs to let Service Canada know.

Do the hospitals have enough information so that they can make that type of decision, or is that private information?

After the death of my father we went to the funeral home and they actually made a lot of the arrangements. They said, “Okay, give us this information and we'll take care of everything for you.” It is a bit of a challenge for Service Canada because not everybody knows that you're collecting EI, for instance.

[Michelle LaFontaine]

That's right.

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

Would you have any recommendations on how we can make that seamless?

[Michelle LaFontaine]

If you ask families to provide their consent for you to share their information with Service Canada, that could happen at the health care provider level. Some families may not choose to go to a funeral home, depending on their beliefs and on the stage of their loss. The health care providers often use a bereavement checklist when they're working with families to make sure that everything is offered to the family. For example, if that was another added line to that checklist, for a health care provider to make sure that their paperwork gets sent to Service Canada on behalf of the family, then the family would just have to provide consent and that would cover off the privacy issue, I believe.

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

That would be prompted more by the health care provider and the hospitals.

I'm trying to figure out, because we're on a federal level, what we can do as Service Canada, as a government, to facilitate that. Is there anything we can do to facilitate that transition period? We do know that with a death it does roll over into bereavement. We know that. In some cases it doesn't, so there's a gap there. We're trying to figure out if it's something that Service Canada has to initiate. In the case, again, of the father and the funeral, we have to send a death certificate, for instance. It's not pretty and it's not pleasant but that is the trigger to get the death benefit.

I'm trying to figure out if there are things that we can do that could make that easier.

[Michelle LaFontaine]

I'm not sure I can answer that for you.

If there's a death certificate that is issued and there is some behind the scenes work that can be done, that's always helpful. I also feel that when families are aware that this is the process, information can be comforting to them, so it's not jarring to them. It might not be easy, but if we know that families have these steps to go through, then they can have support to go through those steps, whatever they may be.