This is the story of parents who have lived through the hardest ordeal.
Posted at 5:00 a.m.
On January 3, their beloved four and a half month old baby breathed his last.
After a normal pregnancy, life turned upside down. Following serious neonatal complications, the newborn had to be sent to palliative care when he was only two weeks old. We didn’t know how long he could live. We just knew that the prognosis was grim.
For Andrée-Anne and Jean-François, it’s as if the Earth had stopped spinning. “All of a sudden, everything collapses. It’s the anguish of life or death that lasted four months,” the mother told me.
As if that were not enough, the parents were entitled, after the death of their child, to a coup de grace from the Quebec Parental Insurance Plan (QPIP). They were first cut in a draconian way their benefits, parental leave being almost non-existent in such a situation – the law provides just two weeks of benefits following the death of a child. As if we were saying to parents: sorry for your baby, but manage now…
Then, in July, another setback, even more cruel: the father was informed that he had to repay all the benefits he had received, namely $11,000.
Reason given: his insurable income was too low for him to be entitled.
The father couldn’t believe his eyes.
“It was surreal. I had enormous stress when I saw the letter. At the same time, I said to myself: it’s impossible! I’ll make a call or two, and they’ll figure out my situation. »
He made a call. Then two. Then three…
He explained his situation. That of a physiotherapist, self-employed, who started his business in 2021, in the midst of a pandemic. To achieve this, he had to buy equipment, treatment tables, furniture… He started to have income by seeing patients from the end of February until August. But not enough to offset his business start-up expenses. In an ideal world, he could have made up for it by continuing to work after his baby was born in August 2021. But he instead had to face the test of his life, at his son’s bedside for four months.
“It is certain that if my child had not been in end-of-life care and that I had worked part of the months of September, October, November and December, I could have had more income… I I was told that at worst, I was going to owe the QPIP a certain amount because, in fact, my income was less than what I had estimated. »
The couple stepped up their efforts to try to have the QPIP’s inhumane decision overturned. In vain.
It’s as if we had lived the unlivable, the most cruel possible. And it continues over time. There is nothing to take care of us afterwards. We are let down by the system.
Andree-Anne
Through this ordeal, the parents would like to pay tribute to the staff of the Maison Lémerveil Suzanne Vachon as well as to the palliative care team of the Center hospitalier de l’Université Laval, who offered them exceptional support. “They are extraordinary people. And our baby too was extraordinary. Our strength comes from him. »
Driven by this strength, parents are fighting today, denouncing the void into which the QPIP plunges bereaved parents, well beyond their personal case.
At least Andrée-Anne was able to count on private health insurance, although she had to fight to obtain it. Despite this financial stress, the parents took the time to properly grieve before returning to work three months later. But how many bereaved parents, abandoned by the QPIP, are forced to return to work too quickly, risking their physical and mental health?
This is the story of Andrée-Anne and Jean-François.
But it is also the story of too many parents who fall into the “cracks” of the system after such an ordeal, whether it is a neonatal death as for this couple or a perinatal death. Nearly 100,000 Canadian couples experience an early (first 20 weeks of pregnancy) or late (between 21 weeks of pregnancy and the first 6 weeks of the baby’s life) perinatal death each year. It is estimated that 20 to 25% of pregnancies end in this way. It’s starting to get crowded.
I confess that I do not understand that the QPIP, which aims to support parents financially, abandons them when they are going through the worst trial of their lives and need this support the most.
“Basically, we are talking about a program that is linked to economic activity. This is one of the weaknesses of the program which is never really questioned. It is not a care policy. It’s a labor market policy,” observes Sophie Mathieu, sociologist at the Vanier Institute for the Family.
The solution ? Rethink the QPIP in terms of care rather than simple economic logic.
To support bereaved parents, the time is no longer for studies, but for action, adds Francine de Montigny, professor in the nursing department at the Université du Québec en Outaouais and director of the Regroupement Paternité, Famille et Company.
PHOTO MAXIME BOISVERT HUNEAULT, PROVIDED BY THE UNIVERSITY OF QUEBEC IN OUTAOUAIS
Francine de Montigny, Professor in the Department of Nursing Sciences at the University of Quebec in Outaouais and Director of the Paternity, Family and Society Group
The researcher was just attending a conference on perinatal bereavement in the United States when she answered my call. The many studies on the subject very clearly indicate that investing in supporting a parent who is grieving is not a luxury. It is a long-term investment in prevention.
Not caring for parents who experience a perinatal death has repercussions. On the mental health of the parents, for the couple, for the children who are already there and for the children who will be born after.
Francine de Montigny, Professor in the Department of Nursing Sciences at the University of Quebec in Outaouais and Director of the Paternity, Family and Society Group
One thing that shocked me in Andrée-Anne’s story is that the QPIP didn’t even offer her condolences after the child’s death. Even on the phone, empathy was not there.
The recognition of mourning is however very important, underlines Francine de Montigny. “You just lost your baby. You call. And you get treated like a number… Like your child is worthless. QPIP employees should have a minimum of training to be able to listen and not add to the trauma of these parents. »
Above all, the Minister of Labour, Employment and Social Solidarity, responsible for the QPIP, should correct the inequities of the system, which particularly affect fathers. In a brief on this issue, the researcher and her team recommend offering flexible bereavement leave to both parents, lasting 24 weeks, the period identified as the most intense in terms of symptoms of bereavement, depression and anxiety.
Although this issue comes up sporadically in the news, although the solutions are documented, there has been very little progress for bereaved parents.
Why ? Because it is still taboo and trivialized, which amplifies the trauma of the parents, notes Francine de Montigny.
If political actions are slow, it may also be because the cause is not supported by a public figure. When a Julie Snyder talks about assisted procreation or a Véronique Cloutier looks at the lack of care for women going through menopause, they get the ear of politicians.
“We can’t manage to have that ear for perinatal bereavement. Because we don’t have a political torchbearer. »
In the midst of the election campaign, this is a great opportunity to question the parties on this subject.
Notice to interested parties: torchbearer wanted for all bereaved parents.
The QPIP persists and signs
The Ministry of Labour, Employment and Social Solidarity, which is responsible for the QPIP, maintains that there was no anomaly in the handling of Jean-François’ file.
“The claim for benefits is not related to the death of the child, but to the fact that the gentleman was not eligible for the QPIP due to the lack of insurable income in the qualifying period. The file was therefore processed in accordance with the legislation in force, ”replied Catherine Poulin, spokesperson for the Ministry, by email.
Self-employed income is calculated based on the estimated income for the year 2021 declared when applying for benefits. A verification is then made following the obtaining in June 2022 of the actual income declared by the parent to Revenu Québec.
Asked about the relevance of rethinking the QPIP to better support bereaved parents, outgoing Minister Jean Boulet said in a statement sent by email that “the loss of a child is an ordeal that no one wants to have to go through and families in this situation show great courage”.
He recalled that Bill 51 passed in 2020 added two weeks of benefits for bereaved parents “to give them some time after this heavy loss”.
“However, I have asked the Parental Insurance Management Board to analyze whether the duration of benefits is sufficient and adequate,” he adds.