Susan Breiddal, a veteran hospice counsellor, offers an intimate, helpful guide to the dying process and grieving.
AFTER DEALING WITH THE LOSS of her infant son Dante 30 years ago—on the heals of the deaths of three other family members—Susan Breiddal realized she wanted to be there to help others facing death. With a degree in social work, she had been working in the counselling field for a dozen years, but Dante’s death changed her focus. She joined the Palliative Response Team of Victoria Hospice, working with the dying and bereaved. In so doing, she learned first hand the paradox that in opening ourselves to death, we open to life itself.
While retired now, Breiddal spent 20 years on the Hospice team. Late last year, her book based on her experiences there—In the Shadow of Angels—was published. In August, we met to discuss her work and the book.
Though most communities have hospice societies, Breiddal tells me that Victoria Hospice is unique in the integration of professional “psychosocial” services with those of medicine and nursing. About 20 counsellors are employed; they attend the dying and their families alongside nurses. The counsellor leader sits at the general management table. She credits the donations Victoria Hospice gets as allowing this team approach, one that also makes home deaths, and the care around them, possible.
Towards the end of her decades with Hospice, Breiddal decided to tackle her Ph.D. focusing on the motivation and experience of people who work with the dying and their families. Breiddal was inspired in part by the idea of leaving a legacy for her colleagues and those thinking of working in a hospice setting.
Her new book blends the theoretical research she did for her thesis with eloquent writing about her life and work. It provides a wealth of insight about palliative care, the work of dying and grieving.
People come to hospice work for different reasons. But part of the attraction, what keeps them doing it, Breiddal explains this way in In the Shadow of Angels: “Being called to the realm of death is to be pulled out of the everydayness of life, a willingness to be off-balance, to have our sense of safety and familiarity challenged, to have the comfort of thinking that we know how it is, constantly disrupted. The call is to surrender to uncertainty, change and discomfort.” To be willing to be present and open.
As she notes in the book, “Most people only deal with a few deaths during the course of their lives, so they can sometimes forget that we are all going to die. In palliative care, we can never forget: at work, encountering mortality happens continuously, over a long period of time.”
In one of the book’s many moving passages, she explains to the questioning brother of a hospice patient, why she loves her job: “It is sad, even heartbreaking at times, but it’s also touching, meeting people. Like you. It’s inspiring. There are so many people who really love other people, who really put out when the going gets tough. It’s kind of a privilege, to be part of such an important time…”
Highly accessible to lay readers, In the Shadow of Angels takes us behind the scenes, visiting the homes of people dying with Hospice’s care. Breiddal must have kept a very detailed and rich journal during her years at Hospice, as she is able to paint vivid scenes of a wide variety of “cases” (all anonymous), complete with dialogue and sharing of her private thoughts, emotional reactions and concerns.
Through her stories and analysis, we learn while there are commonalities among those facing death, whether it be their own or a loved one’s, each situation is unique. And there is no right way to go through it. Breiddal learned from her patients that they have different needs; that each of us process information differently and at different speeds.
She hopes the book and its stories will encourage people to have the conversations among family members that will help them through the process when faced with death.
In particular, Breiddal, who is a very involved grandparent these days, is passionate about including children in the process. “They need information at a different pace,” she tells me, “but they have the same range of emotions and need to have a chance to say good-bye and feel involved in the process. They need to trust us to give them accurate information.”
She also addresses the oft-heard lament “I don’t want to be a burden.” Caring for someone at their end of life is a very intimate experience, she notes. Sometimes it even involves wiping their bum. But it is not a burden; nor is it undignified, she asserts— it’s just part of life. Taking care of such needs is a loving act, one for which we can and do build capacity. She also notes that some, when they say they don’t want to be a burden, are saying “I don’t want that kind of intimacy.” Listening beyond the words is key.
In relating her own discomfort at times during her hospice work, she helps us understand and accept uncertainty, to surrender to the process, to grow through it.
In one part of the book she relates how one can grieve—daily, over the course of years—the slower death of a person from dementia. It occurred with her own mother who came to live with Breiddal’s family shortly after she started working in palliative care. At the time she didn’t realize both how difficult that would be for her whole family, as well as how she “was grieving the loss of her mother, day by day” as she descended into the living nightmare of confusion, suspicion and anxiety that often defines Alzheimers. She writes, “I didn’t know then that what I was about to experience—love and goodwill that slowly dissolved into impatience, intolerance, irritation and finally, rage and hatred—was common to other caregivers, and that my confusion and shame about my emotional response was mixed up with my grief.”
The things Breiddal now sees that she needed most at that time were: “accurate and complete information about dementia and what to expect as a caregiver,” and “a chance to name and explore my grief…my dark feelings.”
IN HER WORK, Breiddal understood it was “important not to hide behind a script.” Instead, she would enter a home or attend the bedside without an agenda, to listen and discover what is needed at that moment.
She notes that with a dying person, nature or life helps them know when to accept help and also when they are ready to go. Family members too learn through the dying process when it is time for a person to die. “But you do the same amount of grieving no matter how long it takes,” Breiddal tells me.
Family dynamics can pose a challenge, of course. “People may not be on the same page. Often it’s the out of town relatives who fly in and want more to be done. It’s important to listen to the emotion behind what they are saying; often there’s guilt or fear.” Breiddal tells me hospice staff “try to stay focused on what the patient wants. People know when they can’t fight it, that the balance has tipped.”
This means hospice counsellors spend a fair amount of time just listening and another chunk educating people. Family members might mistakenly believe that a dying patient not eating means they are choosing not to fight for life. Rather, says Breiddal, it is really them responding in a normal way to the end of life when the body loses its ability to process foods and liquids (the latter can cause swelling or go into the lungs). Another myth is that palliative drugs kill people. The drugs, says Breiddal, are treating the symptoms of the dying process—the pain, primarily—but not hastening death. “The nurses and doctors are very ethical.”
In the Shadow of Angels helps us understand the professionalism and deep knowledge and caring involved in counselling the dying and their loved ones. Ongoing education and emotional intelligence are required, as is an ability to problem-solve. As Breiddal notes, sometimes you are walking into a home with dozens of people, all with different needs. Creating a safe, non-threatening environment for them is paramount.
Managing one’s own emotions and helping colleagues cope also comes with the role of a palliative counsellor.
In the end, for her personally, she tells me, working with the dying has inspired her to live in the moment and to feel gratitude for what she and her loved ones have. Breiddal has three adult children and three young grandchildren. She lives in a large old house in Oak Bay with her husband of 45 years, her daughter, son-in-law and two young grandchildren.
Of course, she admits wryly, 20 years of working with those near death is a double-edged sword in that she certainly realizes all the things that can go wrong with a body. But that doesn’t deter her, at age 70, from rock climbing and daily ocean plunges. She also looks for and finds many opportunities to practice kindness.
Leslie Campbell is the editor of focusonvictoria.ca.