In his final days, Michael Petrella’s bedroom – and then hospital room – had something of a revolving door. All his loved ones came by, on his insistence, to say goodbye.
At just 20 years old, with his body failing after nearly two years of treatments for aggressive acute lymphoblastic leukemia, the young Montreal man found the energy to speak from the heart to his family and friends. He let them know how he felt about them, and what he wanted after he was gone.
“I’m terrified of dying,” Michael told his parents Carla and Phil. “But I’m also terrified of leaving you guys behind.” Along with detailed wishes regarding his funeral, he asked his family to keep raising funds and awareness for blood cancers.
“Mom, this is my purpose,” he told Carla, repeatedly: “To help other people like myself.”
Phil remembers Michael telling him to take better care of himself, to get fit and stay healthy for the family. He had a similar message for his friends, telling them “Life is short,” and urging them to make wise choices in life. He asked two friends in particular to “keep an eye on” his little brother Anthony, now 15, worrying that he would need guidance.
Michael died on March 19, 2019, and now, more than a year after his death, his family looks back on those final, tearful discussions as precious gifts.
“He made those conversations happen,” Carla says. “Because we went through it, we feel it’s very important for other families to have those conversations, difficult as they are.”
The reality is that many families facing death don’t have these conversations, says Elizabeth Dougherty, a palliative care psychosocial clinician and educator based in Burlington, Ontario. She counsels grieving families and says they often struggle to talk about death, plan for the future and say goodbye.
For many, talking about emotions is just too hard, and they don’t know where to start, Dougherty says. The parents of a terminally ill child may be particularly reticent to bring up the concept of death.
“They’re so afraid, people often say nothing,” she says.
But when families don’t have these difficult discussions with their dying loved one, “I see avoidable suffering and missed opportunities.”
on discussing death with her terminally ill son, Michael
To get conversations started, Dougherty recommends families try the “three Ws”: wonder, worry and wish. That starts with asking their terminally ill loved one what they are wondering about, which may prompt them to voice questions such as the side effects of medications or when death will come. Asking what they are worrying about can prompt them to talk about their fears, such as how the family will cope after their death. The wish part helps people express their wishes for funerals and end of life care.
Some families may need support to begin talking. Bereavement counselling is sometimes available, but Dougherty warns it can be difficult to secure through the health-care system, and families many end up paying out of pocket.
The Leukemia & Lymphoma Society of Canada (LLSC) offers resources on their website to support families and individuals facing the terminal phase of an illness (llscanada.org/managing-your-cancer/end-of-life-care). As well, the LLSC’s Community Services Managers are compassionate navigators trained to help support families with everything from financial assistance to educational resources to insurance support, as well as providing referrals to other services in the community.
“Community Service Managers can help people affected by a blood cancer access critical resources and support services they need at every step of their blood cancer experience,” says Nadine Prevost, director, community engagement at the LLSC.
The Petrella family still feels heavy grief at the loss of their bright and caring son. They take comfort in knowing they said their goodbyes fully and, as best they could, gave him the death and funeral he wanted. They know how much he valued their work in raising money for blood cancers, so they keep up traditions like participating in the LLSC’s Light The Night.
Though death can happen suddenly, Carla says she’s glad Michael had the time to communicate his thoughts and wishes. “Sometimes people don’t have that opportunity to say what they need to say.”
Now in its 16th year, Light The Night is a fundraising event that unites the entire blood cancer community to celebrate cancer survivors, honour those that have been lost and give hope to those facing a blood cancer. This event generates 60 per cent of The Leukemia & Lymphoma Society’s total revenue, providing critical funding for blood cancer research and support services.
This year, Light The Night will be happening virtually, with teams across the country celebrating as one community on October 24th at 7pm EST. Visit lightthenight.ca for more info.
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