Ushering in, and easing out
The role of touch in birth and death
By Laura Hensley
My grandfather died the way he wanted: at home in Toronto, in his bed, holding my grandmother’s hand. They’d been married for 72 years.
My grandfather had been suffering for months, his body steadily declining as prostate and lung cancer consumed him, cell by cell. In his final months in 2020, he didn’t do much moving. He couldn’t walk, and at the height of the COVID-19 pandemic there weren’t many places to go, anyway.
I’d kept my distance from my 94-year-old grandfather in the weeks leading up to his death, terrified of passing on a virus that disproportionately killed older people. But when his palliative doctor told us he had only days left to live, I wanted nothing more than to hold him, touch his hands, his head and his arms. Due to high doses of pain medication, he was unable to communicate as he normally would, so I wanted to make sure he knew I was there. If he was going to die, I thought, why not make sure he felt his family around him? I am not a trained scientist but on an intuitive level, I know touch is important.
Touch is one of the first senses we develop in the womb. Throughout our lives, feelings on our skin activate our nervous system and send signals to the brain. The right kind of touch has healing capabilities. Massage, for instance, has been shown to help with the symptoms of conditions such as arthritis, multiple sclerosis and Parkinson’s. It might also help lower blood pressure. Touch therapies, such as massage and reflexology, have been shown to improve both the physical and emotional symptoms of cancer patients, including lessening their pain and fatigue.
Touch is an unparalleled way to communicate with people — especially those like my grandfather who, before he died, was no longer able to speak — and to tell them, “It’s OK, you are safe, I am here.”
Breffni Hannon (PGME ’13, MSc ’18), an associate professor in the Temerty Faculty of Medicine’s Department of Medicine and a palliative care site lead at Princess Margaret Cancer Centre, says that during her career, she has seen how powerful touch is for people who are close to the end of their life.
“I have seen patients be so comforted by having their families able to sit close to them, lay beside them, hold their hands and embrace them, including patients who were restless or agitated,” Hannon says. “It’s the art of human connection.”
There’s an emphasis on touch at the beginning of life, she says, when parents are encouraged to engage in skin-to-skin contact with their newborn. For example, touch can facilitate bonding and secure attachment between a baby and their parents, as well as create a sense of safety in a child — which is key to psychosocial development. Then, as kids grow, research suggests that affectionate touch (which promotes the feel-good hormone oxytocin) can lower stress levels and promote healthy social engagement.
In other words, touch grounds us. As we age, however, we may move away from the frequent touch we had in childhood. For older adults, hugs with friends might be less common. For those without an intimate partner or close family, the act of cuddling or holding hands may be rare. During the COVID-19 pandemic, for example, the term “touch-hunger” was introduced — a new way of acknowledging that physical touch matters.
Then there is the experience of death. When someone is dying, Hannon says touch can become more of a “medicalized” experience — like when a patient has an IV tube inserted into their arm, or they’re hooked up to a ventilator. This makes a more personal kind of touch even more important — which can be used in tandem with treatment, says Hannon.
“Touch really helps patients to be more relaxed,” Hannon says. “You see it in their facial expressions, in their breathing and how they hold their bodies. All of these physiological markers show just how important touch can be in the end-of-life experience.”
Seana Bulle, a second-year family medicine resident at Temerty Medicine, says that it’s paramount to deliver the best end-of-life care, making patients feel comfortable and abiding by their wishes. She says a lot of patients will say that their family is important to them and that they want to be surrounded by their loved ones as they die. The role of touch in this situation offers a sense of familiarity.
“Touch can be a love language used in various cultures. It can bring a grounding presence to patients who are at the end of their lives, or who have serious illnesses,” Bulle says. “Touch can be calming and allow the patient to feel surrounded by loved ones.”
Bulle has worked in a variety of environments with patients who are at the end of their life, including in hospitals, homes and hospices. She has found that the connecting thread in her work is that good experiences need to focus first on the patient’s needs. That means that health care providers must really understand who a patient is and what matters most to them.
“In palliative care, we ask questions that I don’t see routinely asked in other medical specialties, such as, ‘What are you worried about in the future?’ Or, ‘What are you hoping for?’ And my favourite, ‘What do we need to know about you as a person in order to provide you with the best care possible?’” says Bulle, who is beginning a year-long fellowship in palliative care at the University of Toronto next month.
Culturally relevant palliative care is also crucial, says Bulle. When health care providers understand a patient’s background, family history, religious beliefs and end-of-life desires, they can aim to deliver the best experience for them, she adds.
Bulle also says that not all Canadians have equal access to palliative care; research suggests that people of colour and recent immigrants may have poorer access. In Canada, palliative care has historically been rooted in Eurocentric ideologies, Bulle says, and, as a result, hasn’t always included racialized groups and their specific needs.
“It’s really important for us to understand how we can help support these various groups and how their needs may change depending on what their experience and background is,” she says.
Quality, patient-centred end-of-life care isn’t just a benefit to patients, Hannon says. Being physically close to a person as they’re dying, whether that be in the home or in a medical setting, can be a comfort to the family, too. Hannon says there’s often a feeling of hopelessness for family members when a loved one is about to die, and a feeling of helplessness if they can’t contribute to their medical care. Touch is a tangible way to help the person who is dying — and their loved ones — feel soothed.
“To me, the physical presence of a loved one is far more valuable in many instances than a doctor at the end of somebody’s life,” Hannon says. “I think it also allows the loved one to feel like they’re part of the care team.”
This was certainly the case for my grandmother during my grandfather’s final months, and for me during my grandfather’s final days.
In September 2020, I camped out at my grandparents’ house for the three days before he passed away on September 28. I kept a mask on when I was near him, still afraid of passing on a virus, even though his body was starting to shut down. The focus had shifted to managing his pain and making him as comfortable as possible.
It brings me solace to know that when my grandfather passed, he was in his bedroom, in the home he had lived in for the last 65 years, as my grandmother grasped his hand and sang him a song. I cried because I had just lost him. But I also smiled because I knew he felt at peace. I gently kissed his forehead knowing it would be the last time I would be able to physically touch him.
A few days later, my grandfather was cremated on my birthday, exactly 30 years after he first met me and cradled me in his arms. My mother told me that as soon as I was born in the hospital, he couldn’t stop holding me. I think back now and am grateful knowing that his soft skin was some of the first that my newborn body felt.
And, I sleep easy knowing he left the world the way I entered it: feeling the warm touch of someone who loved him very much. •
Laura Hensley is a Toronto-based writer and journalism instructor.