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.