What is it like to be with a person when they die? To see their chest rise one final time, to witness the light behind their eyes extinguish, to feel a peace and stillness in a room that wasn’t there before?
Just as with the moment we take our first breath, struggling just a little, surrounded by comfort and love, so many of us take our last.
Donna Bonnell was lying in bed with her mother when she died on Feb. 13 last year. Having been diagnosed with multiple myeloma — a cancer of the plasma cells — during the summer of 2011, Gwen Bonnell had been well, even through chemotherapy treatment, right up until a month prior to her death. It wasn’t until Dec. 23, 2011, that she was admitted to hospital.
“We were never thinking for a second she wouldn’t be coming out,” Donna said. “We figured she’d go in, they’d do what they had to do and she’d be released.”
Gwen began, like many terminally ill people do, eating less and sleeping more. She had a couple of cycles of infection and healing before finally, three days before Valentine’s Day 2012, doctors told Donna and her father that Gwen was on borrowed time. She passed away in Donna’s arms.
“I wouldn’t have had it any other way,” Donna said. She had been lying in bed with her sleeping mom while her dad sat in a chair nearby. In a quiet hospital room, with the door closed, they spoke softly to each other and watched as Gwen’s breathing began to change.
“And then she just took her last breath. Everything stopped. We were waiting for another breath,” Donna explained. “Dad said, ‘Do you think?’ and I said, ‘I think so.’ We pressed the button for the nurse. And then she was gone.”
As a young nurse on a medical floor at St. Clare’s Mercy Hospital in
St. John’s, Laurie Anne O’Brien found herself drawn to patients who were dying. Doing her medication rounds, she’d leave the terminally ill patients for last, in order to have some time to sit and talk with them. At that time, more than 30 years ago, palliative care wasn’t a notion in St. John’s, and even physicians, she said, had no formal training on how to break the news of a terminal illness to patients and their families.
Through the encouragement of her administrators, O’Brien became something of a pioneer when it comes to the palliative philosophy of care in this province.
“We talk about whole-person care; treating the person as a whole: what they’re going through with symptoms, with pain; emotional in terms of what they’re responding to and reacting to; and the spiritual, because spirituality comes into it more so than ever before, when it comes to the meaning of your life, what it’s about, what’s going to happen, and is there anything beyond here,” O’Brien said of the palliative care philosophy, which includes a patient’s loved ones as well. Though she has been retired now for a little more than a year, O’Brien is still involved in palliative care as the new president of the Canadian Hospice Palliative Care Association.
She has spent 32 years working directly with the terminally ill, and has been present with hundreds of people as they died — something she says is an honour and a privilege. Most patients are at peace during their final weeks, and O’Brien said many have told her they weren’t at all surprised to have gotten the news of the state of their illness from their doctor.
Quite a number of them have said they won’t talk about their condition with their families because they’re afraid of hurting them, preferring instead the kind ear of O’Brien and others on their care team. Strangers, O’Brien has heard, are sometimes easier to talk to.
Many have questions about the process of dying, and have asked O’Brien what it will be like. She knows the physical changes that occur — a withdrawal, changes in sleeping, eating and lucidity (though hearing is said to be the last sense to go, she said), a change in breathing at the very end — but apart from that, she has trouble putting what actually happens into words. In her experience, it has always been peaceful.
“I think there’s no way of explaining being present there at that time. People may call it a spiritual experience,” O’Brien said. “The fact that someone’s there and we have this body and then all of a sudden it’s quiet and they’re gone.
“I don’t think there are words in the English language to explain it.”
Being a palliative care nurse means you can’t be anonymous, and O’Brien rarely goes out in public without being hugged by someone she meets along the way. She’s aware of the effect she has on patients and their loved ones, and their memory lives on for her as much as hers does for them. Her bond with patients in the final stages of their life is strong, and she speaks of them with a gentle voice, her care evident. There’s the man who brought a trunk of his belongings in with him, and showed them to her one by one. The lady who had her budgie bird in hospital with her. The young man in his 20s who would write questions down for her in a notebook so he wouldn’t forget to ask them when he saw her next.
There was another man, a fisherman disfigured due to cancer of the face, who touched her heart. She asked his family to show her pictures of him before his cancer, so she could get to know him separately from his illness.
“We went in to visit him (at home) and all I remember are those big blue eyes. I remember talking to him and discussing if he wanted to come to palliative care at some point in time. He held my hand and even when he had tears, they couldn’t go down the way tears would normally go down, because his face was different,” O’Brien said, tracing a line down her cheek with her finger.
“He came to palliative care and in those days we actually had waterbed mattresses. He had a tracheostomy so he couldn’t speak, but he could write on paper on a pad. One day, I was doing my rounds and he did (a sign for) ‘come here,’ and grabbed my hand. Then he wrote, ‘I don’t know what Heaven’s going to be like, because I’m already there.’ He was on a water mattress and he felt he was on a boat.”
Donna’s mother had always made her wishes clear to her family: quality of life was important to her, and she did not want to be kept alive artificially.
O’Brien said advance care planning, working out details of where you want to be and how you would like to be cared for, is one of the most important things a person can do. She’d like to see a more seamless system where people realize this, she said.
Her main goal when it comes to palliative care is to make sure people living their last days are living them to the max, as much as they can.
“Oftentimes patients have said to me, ‘I wish they didn’t know I had this. I wish they’d talk to me in the normal way, the same way they used to.’ That’s where we come in, a lot of times, because we can bring laughter, we can bring memories, and we can bring things to show them it’s OK today and they can live their day to the fullest.”
Laurie Anne O'Brien