Hank Michalow knew he was dying. He spoke openly, unafraid to ask questions or to reveal his fears and wishes. The 68-year-old also made sure to say his goodbyes while he could.
His candour, from ensuring family members would be OK to humorously asking that his hair be kept tidy when he did die, helped his family cope when he died of complications from pulmonary fibrosis 13 years ago.
“I feel very privileged. He was so open about it. He had time and opportunity to do a lot of important life things in the limited amount of time he had,” recalls Lorelei Sawchuk, his daughter.
It’s fitting how Hank faced his last days, given that Lorelei is a palliative care nurse who has been caring for the dying for the past 25 years. “He wanted to live as long as he could, as comfortably as he could. There wasn’t a fear of dying. He made it easier,” says Lorelei, Nurse Practitioner and Education Lead for the Palliative Institute.
Though some people can change once they learn they’re dying, loved ones shouldn’t expect a dramatic personality transformation, says Carleen Brenneis, Director of the Palliative Institute.
“People really die as they live,” says Carleen. “You can’t expect people to change. Some people are really open and talk about everything. Some people don’t talk about things.”
Let the dying person lead
Many factors, such as culture, can affect a person’s willingness to talk about their impending death. Some people avoid the subject because they see it as giving up on life.
Check on a person’s comfort level before you start discussing the illness, advises Lorelei. “Be open about your own feelings and say, ‘I’m so sorry. I hear you’re sick and I honestly don’t know what to say, but is this something you’re comfortable talking about?’ Just start that way.”
If the person doesn’t want to speak openly, there are ways to still have meaningful conversations and ensure their last wishes are met. Ask whether they want visitors and who they want to see. The list could include a pet. Ask whether there is a desire to go home, even for a few hours. Ask whether the person has any worries. Ask what they need from you. “Be present. Be compassionate,” says Carleen. “Dying is part of living. All of us die. It’s an important part of life. Go visit. Be with them. Send them a card. Connect.”
Talk about everyday things. If you used to go for coffee or a beer together, bring that with you to your visit. “Treat them as normally as you can,” adds Carleen.
Know that it’s OK to be uncomfortable. Tell the person how you’re feeling and that you’re worried about saying the wrong thing. “Just be really honest,” says Lorelei.
And be aware that there can be a shift in the tone of visits, says Carleen. “You may have one wonderful visit and the next time, not at all. As you can imagine with a person who’s dying, their emotions and even their physical awareness vary.”
If the person starts talking, listen. Sitting in silence can be comforting as well.
You may not need to say a formal goodbye. It may be more appropriate to say something that reflects your relationship and how the person has contributed to your life. “That’s really the meaning of goodbye,” says Lorelei. “You want to share with that person why they are important to you. You can say something like, ‘I want to let you know you’ve been a really important part of my life,’ or, ‘This is what I’ve really valued about our relationship.’”
Try to deal with regrets
Many people struggle if they’ve made mistakes or if the relationship has been troubled. Lorelei says if a negative event occurred, you can tell the person you wish it didn’t happen. “You can say it in a way that you’re acknowledging regret, but in a way that you’re trying to make amends or peace.”
If you feel the dying person has made mistakes, you can try to speak with them about it. But be prepared that you may not get the closure you seek. “Don’t push your needs onto the person,” says Carleen. If you need to forgive the person, you can do it verbally or silently say the words, says Carleen. “Sometimes forgiveness and staying silent is more powerful than clearing the air.”
This is the time to recall those moments that made you laugh and even cry. Reflecting on the good and trying times can recount a full and well-lived life. Ask the person what they hope you’ll always remember. You may be surprised by a favourite story or the advice you’ll receive.
If the person can’t return home, ask whether they want certain photos or treasured mementos brought to their care site.
Say “I love you”
Don’t be shy about sharing your feelings. “Every time you visit someone near the end of their life, make sure you’re happy with how you end that conversation,” advises Carleen.
Show your feelings
It’s OK to cry. “Sometimes crying shows more strength than being stoic, because you’re letting emotions out,” says Carleen. Emotions can be stronger than words. Physical contact is also important, says Lorelei: “A hug, a touch or even sitting right beside a person—that can be more powerful than words.”
Carleen and Lorelei both recommend The Virtual Hospice as a resource for end-of-life, loss and grief information.
Have a story to share about health care? An idea for an article? We value all contributions.