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
Wayne Long Liberal Saint John—Rothesay, NB
Professor Dyregrov, thanks for coming to us from Bergen. I spent a lot of time in Bergen in my previous life in agriculture with Stolt Sea Farm. We had aquaculture operations in Bergen.
We're here because we want to get advice from our witnesses as to how government can move forward and help parents who suffer the loss of a child.
From your experience, what's the best way for us as a federal government to help?
Professor, Centre for Crisis Psychology, University of Bergen, As an Individual
Your system in Canada is different from the one we have in Norway. I think it's important that those who meet the families at hospitals and in the health services have a responsibility to secure follow-up over time. Then you have the more voluntary organizations coming in and helping or being in addition to that. I think there should be somebody who has a responsibility to follow up.
I'd like to comment quickly also on the 12 weeks. I hope that is something that would be voluntary, because I think that some people—we have this in Norway—some doctors, just put parents on sick leave and they do them a disservice in that way, because work life can also be getting away from the loss, taking pauses from loss. It's important to go against the loss, but it's also important to get away from it, and therefore just having to be away from work for 12 weeks will not be a good idea for everyone.
Liberal
Wayne Long Liberal Saint John—Rothesay, NB
You're saying that leave is one thing and financial support is one thing, but there should be more wraparound support for the families.
Professor, Centre for Crisis Psychology, University of Bergen, As an Individual
There should also be flexibility, regarding whether to go away from the work or not. Some people really cope well when they have another leg to stand on, so not only being a bereaved parent, but also having a work life. It just has to be an adjusted work life.
Liberal
NDP
Brigitte Sansoucy NDP Saint-Hyacinthe—Bagot, QC
Thank you, Mr. Chair.
I'd like to begin by thanking both witnesses. My first question is for Dr. Dyregrov.
You talked about the importance of providing local support and long-term care, in addition to specialized services in hospital. I'd like to know about the resources that currently exist in Norway to support families. Is there a network of organizations across the country? Do they receive government funding? I'm curious about Norway's best practices to support families, outside the institutionalized health care system.
Professor, Centre for Crisis Psychology, University of Bergen, As an Individual
Most of the families would be met by their institutional services. That means the community's crisis team will meet every family. If it's in the hospital, there will be a hospital responsibility.
Specialized services are second-line services. If somebody is really suffering a lot, they will be referred to the second line and usually see a specialist within psychology. It's not automatic and we are better at following up with trauma than we are with loss. Now, given the new situation with diagnosis, there is also more recognition of grief in the public system. The crisis teams we have, in every community in Norway, work primarily with sudden losses, which is often when a child dies. About 90% to 95% of their work will be in relation to a loss. That's our system.
Next, we have the nationwide organizations. There aren't many of them. We have three or four. One is for suicide bereavement. One is for childhood, before the age of four. There's a third one as well. These offer supportive services. The former sudden infant death association, which now has another name, had a weekend for them. I'm going to Tromso tomorrow, Trondheim the day after and then Oslo, where they arranged something to do with coping with loss. There are a lot of people coming to these events, so they do a lot to help.
The thing we are lacking is that these organizations are not brought into the chain at once. It's not automatic from the hospital system. I would have liked that. That's where the role of science comes in, but they're not allowed to just notify them. There are laws that prohibit it. It would be a much better model to have them directly co-operating with the government or to have the things paid for by the government.
NDP
Brigitte Sansoucy NDP Saint-Hyacinthe—Bagot, QC
Thank you.
Ms. LaFontaine, in your opening remarks, you talked about the lack of support and compassion for parents. You also said the support that was available was volunteer-based and in need of funding. As part of the committee's study, we have to make recommendations. Everything we've heard from witnesses thus far makes me think we should really be examining the funding going to the organizations that are doing the excellent work on the ground. As you pointed out, they operate on meagre resources, after all.
I was surprised to learn—and this ties in with what Dr. Dyregrov just told us—that Service Canada doesn't offer any tools for parents, not even to refer them to appropriate resources or assist them in navigating existing services.
Could the federal government establish initiatives to better support organizations like yours and ensure they are available throughout the country? My riding is home to Les amis du crépuscule, an organization that provides support to people who are grieving. It lacks resources, so it spends part of the year on fundraising just to survive. I'm talking about helping organizations like these, as well as promoting their services.
Is there anything we could do to make people more aware of their services? Could Service Canada serve as a gateway or portal where people could turn for information about organizations on the ground?
Program Manager, Pregnancy and Infant Loss Network
To start with the question about the resources for different organizations that require it, prior to Bill 141 passing, PAIL Network was also a volunteer-run organization. We were applying for grants to try to keep the doors open. Very little promotion was available to us to let families know we existed.
I would certainly agree with you that we definitely need more financial resources for these organizations that are looking to provide support for families, to be able to let families know and to let health care providers know where they can refer families, where they can send families who need support after their loss. I agree that it's the responsibility of a health care professional to ensure that families leave the hospital or leave their health care environment with information for follow-up in their communities.
On the question about whether we could have a portal through Service Canada that can help guide the families, I believe there is one in place for other such programs. That would be extremely helpful, particularly if the staff who were delivering that program had been trained on how to use the most compassionate language, to understand a family's normal grief pattern, and to know where to best support them and what other programs they can access.
NDP
Brigitte Sansoucy NDP Saint-Hyacinthe—Bagot, QC
If I understand correctly, a support system for parents is really needed. When they are grieving, they can't be expected to look for resources themselves. The committee heard from parents who said they had had to wait in line to access benefits in the first few days following their loss, while in the depths of their grief. We need to make sure parents receive the guidance and support they need so they can access the information easily.
Did I understand that correctly?
Program Manager, Pregnancy and Infant Loss Network
I agree. What we're piloting right now with PAIL Network is an automatic consent system so that, at the time of their loss, families will give their consent to their health care provider to share their information directly with PAIL Network so the family doesn't have to go home, admit that they need support, and then find the support on their own.
That pilot is going extremely well, and I believe the more we can automate things for families, the more we can take it out of their hands at the time of their loss to have to research, find it, and go and access it, the better.
Certainly if there was something automated at the time of their loss, whereby paperwork or information would get sent with the family's consent to somewhere such as Service Canada so benefits could be started automatically, that would be extremely helpful.
October 30th, 2018 / 9:20 a.m.
Liberal
Gordie Hogg South Surrey—White Rock, Lib.
Thank you.
Professor, you made reference to a number of issues in talking about how we, as a country, can try to ensure as a principle that we're a compassionate, caring society, that we're able to provide supports and services to those people in greatest need.
Would you think there are any gold standards or better practices around the world that we could reference? What would you see as being those practices that would be at the forefront, and what would the principles of those be?
Professor, Centre for Crisis Psychology, University of Bergen, As an Individual
The principles are, as just mentioned, that there's an outreach, that the system reaches out, or the help reaches out, and they don't have to go around looking for that help. There has to be immediacy; it needs to be there very quickly. It has to be built on good information and a caring environment for that information.
Also something we've seen when we compare what we found in the late 1990s about how satisfied they were with the care is that there was low satisfaction with the care among bereaved at that time. Now, after the terror, we did a new study. We asked the parents what they thought about it, and there was high satisfaction with the type of help they had received. However, what they were dissatisfied with was the specific help. They said they felt that the health environment now sees them, now recognizes them, but when they deal with specific problems, there isn't specific help. They say there needs to be better help for those who are going into complicated grief issues. That's an important point.
South Surrey—White Rock, Lib.
I appreciate those principles, but how do you see taking those principles and implementing them within a bureaucracy and a structure of government, the values you're reflecting and the principles coming out of those values, but then taking those into a way to look at operationalizing them that makes sense in terms of the functioning? That's the skill-testing part of this.
Professor, Centre for Crisis Psychology, University of Bergen, As an Individual
There are some good articles that sum this up, from some of the big societies, I think from the American Academy of Pediatrics. They will be helpful for you to look at, because they see that this is what people want. This is also based on feedback from users, if we use that term in this situation, meaning those who have been bereaved.
South Surrey—White Rock, Lib.
You mentioned there's a range of responses. You talked about some people going back to work earlier and getting a lot of support from their work environment, which helped them move through the grieving more quickly.
What do you see as the parameters of flexibility with respect to this? My wife and I went through a miscarriage late in a pregnancy. That was a significant issue. What would be the scope of identifying where and when people would be able to access supports provided by the state, given the flexibility and range of things? I've worked with families where grandparents were significantly impacted, and there are concerns with respect to that, and extended family members.
There's a wide range of impact with PTSD, and certainly you made reference to—in North America we use DSM-5, the Diagnostic and Statistical Manual of Mental Disorders, but, sir, PTSD and the response to this are very subjective. Each of us comes to it with a different set of understandings and a different set of challenges.
How would you look at the scope in terms of addressing them? How did you address them in the issues you made reference to, with the terrible shootings that took place? How did you deal with extended family, relatives, neighbours and friends? Is that part of the provisions you're looking at, or is it focused much more acutely?
Professor, Centre for Crisis Psychology, University of Bergen, As an Individual
One of the lessons we learned from the terror is...we had one of our Ph.D. students do her thesis on friends' grief. We could show that close friends of those who were killed were at the level of siblings when it came to their grief. It went down a bit sooner than for siblings. We identified those. Grandparents have been identified in several studies.
Of course, you need to start somewhere, and I think you start with parents and siblings, and then you have to build on that. It's very flexible, and it has to be flexible for the reasons you gave.
Before I came into the meeting, I saw a couple who lost two children, and they're functioning. Both are back at work. If others had asked if that was possible, we'd say, yes, it is possible for some, but most people will be totally crushed by that. They look favourably at flexible systems with these structures and possibilities built in, but with the length or period, I think you have to base that on what your resources are.
I could tell you that from Swedish research, we see that if there's a sudden death, parents will in general have 10 times as much sick leave, over three weeks, than those who have not experienced it. If you have an anticipated death, it will be five times as much. These are big studies. It is a societal problem that we don't follow up on well enough.
South Surrey—White Rock, Lib.
Ms. LaFontaine, we're looking at psychological and emotional support, as well as financial support. Obviously it's difficult to separate those. Within the context of emotional and psychological support, do you see that falling primarily under our medical services plan—that's where the first contact is, and then it transitions more into the support that happens through a work environment, and the state provides? The third part would be the community support that starts coming out of that.
How do you see that fitting together with those three pieces? Maybe there are more pieces, in terms of being able to develop this notion of a compassionate, caring society, when there's so much subjectivity in terms of the types of needs. How do we work our way through that?
South Surrey—White Rock, Lib.
Are you asking her to give a brief answer to a complex question?
Program Manager, Pregnancy and Infant Loss Network
I believe that families will need to access professional support, as well as the type of support that we offer, which is peer support. Learning that you're not alone in your grief can be a very comforting notion for families to be able to move forward. In terms of access to other types of financial support, again, that could certainly be something that is layered on top of that. I don't think they all need to happen one after the other.
Liberal
Ramesh Sangha Liberal Brampton Centre, ON
Thank you, Chair, and thanks to all the witnesses for giving very good input.
I'm sorry that you lost your son. I know you have personally faced that problem. Socially thinking, when we are in this type of situation, we want somebody to be close to us. You want to be near someone when you go to work. You want somebody to talk to you and listen to you. You may be telling your story sometimes to others. You may be feeling like giving your inner feelings. Some people will be good. They will come close to you, and sit and listen to your story and console you, but others may not have the time. Other people will say, “Why is she only talking about this? Why doesn't she talk about something else?” Whether you feel this type of social help, how far will it assist you to console?
