Pediatric spiritual care counsellor Sue Buell on trust, being actively present, and listening with your heart
“I give support to anybody and everybody who comes through our doors. It doesn’t matter if they are religious or not, or spiritual or atheist, it doesn’t make any difference to me.”
By Devon Phillips. As a pediatric spiritual care worker, Sue Buell walks alongside children and their families though cancer diagnosis, treatment and sometimes, palliative care. For Sue, spiritual care at its core addresses deep life issues and this process requires a combination of soul searching and practical support that is only possible with the development of trust and respect. I met with Sue in her office at the Montreal Children’s Hospital, MUHC, in Montreal.
Q: Have you always worked with kids and their families?
A: In all the churches where I was, I was involved with kids, but I never thought I would be doing pastoral services in a hospital for children and specializing in oncology. But it’s a great fit.
I’ve been here at the Children’s Hospital since June 2011, but I have been a pastor in spiritual care services for 37 years now. It doesn’t seem possible – 37 years!
Q: Are you an ordained minister?
A: Yes, in the Salvation Army. I did theological studies to become a pastor and then I took a three-year certification in spiritual and emotional care at the University of Winnipeg. I did pastoral training in a clinical setting so it was practical and intensive, and required a lot of soul searching. I did my stage at the women’s pavilion in gynecology oncology at the Royal Victoria Hospital.
Q: You work specifically with children and their families. How you introduce yourself?
A: I always introduce myself, as “Hi, my name is Sue and I am spiritual care worker and I am part of the support team here in hematology oncology.” I try to get it out in one breath without scaring them before they have a chance to say, “My kid is not religious and he is not going to die.” The fear is that if someone from pastoral care is here, their child is going to die.
People are overwhelmed when they first meet us. There are the doctors, the nurses, the psychologist, everybody, plus a thick book on the protocol for chemo treatments. Parents are thinking, “My child has cancer, is he or she going to die?” So as a spiritual care counsellor, it’s a matter of developing a relationship with the person and this requires a lot of trust.
Q: Tell me about your role. What do you do?
A: I support families from initial diagnosis and then follow them through to the end of treatment, to additional treatment, or to death, whichever it ends up to be. So my role is supporting them, walking alongside them, listening, providing encouragement, sometimes just passing a box of Kleenex.
I don’t go to people with a planned agenda. I know what I believe in, but some people might not or they come from a different religious or spiritual perspective. But when it comes down to life issue questions, that’s in the spirit of every person. That’s soul searching. From some people who say they are not religious, I have had some unbelievable conversations on the meaning of life, the meaning of death, and the desire to live and to get through hard circumstances.
Q: Can you clarify what you mean by spiritual care.
A: Most people think you have to have had a church or religious experience to be considered for spiritual care, but spiritual care really means addressing the deep life issues, the big questions of why. Spiritual care is dealing with the feelings of guilt from parents who ask, “What did I do to cause this for my child?” It’s dealing with soul-searching questions and the emotions that come with all of this, and these are big emotions.
Q: The children and families you work with come from many different cultures and religions. How do you accommodate those differences?
A: If somebody who is Muslim for example wants an imam, or someone Catholic wants a priest, we try our best to fulfill the family’s needs. If it’s at the moment of death, we do communion, prayers, blessings, baptisms if requested. As spiritual care providers, we do whatever we are called to do.
I remember going into the waiting room at the clinic, and a veiled Muslim women said “Hello Suzanne, it’s been so long since I’ve seen you” and we hugged one another. I have been a presence in her life when she needed me, to walk with her through her child’s diagnosis of cancer, the treatments and the follow up. How did she put it? “We may have different prayers, but we have the same god.” That’s spiritual care, our spirits meeting together.
Q: Tell me about your team.
A: On the team is spiritual care, a person from child life, two social workers, doctors, nurses, a music therapist, physiotherapist, massage therapist, psychologist, psychiatrist, all the specialists, including the pharmacist who meets with the families as well.
I work very closely with a group called “Child Life” and they specialize in children and family support. They prepare children for different treatments including bone marrow transplants. We work together as a team. For example, we get the families out of the rooms and we try to normalize life. Coffee time Wednesday morning has changed the atmosphere on the floor. Parents refer to this as “Magic Moments”. We gather around the coffee machine, make noise, laugh, cry. The best conversations have been in the corner having coffee and crying with a parent, it’s amazing. You don’t know what will come up and you don’t know when.
Q: Trust must be an essential requirement for your job.
A: The need for trust is huge, monumental. Because of the nature of the work, families trust us with their lives. We see them in pyjamas, we see them at their worst moments, we see them when they are most angry, most emotional, sometimes crying in our arms, and a lot of them say, “You are like my second family.” I feel that way too.
Q: It must be tough when there is a transition from acute care to palliative care.
A: I work with an amazing team and the staff supports the patients and the families. They have a job to get done, yes, but they do it in such a caring and loving way so when it changes from acute to palliative care they have the same loving, professional care that they have provided before.
The hardest for me, and I think for the rest of the staff and probably for the other parents, is to watch a child lose weight, to not have good colour, and to know that they are walking toward their death. We see this but we don’t want to lose them.
Q: Do your spiritual beliefs help you manage sad circumstances?
A: I am very grateful to God that I have the privilege to work here. Each one of us has a purpose in life. We have the opportunity to touch somebody else’s life in whatever way they need us to be a presence, to listen with our hearts, and leave a trace of sparkles in their lives for however long they are on this earth. It’s about actively being there and being fully present. When I am with you, I am with you.
Q: And what about the kids? Do they talk to you?
A: The kids do talk to me. The older kids will talk more than the younger ones. The little ones talk about being tired. The adolescents sometimes talk and the sweetest sound in my ears is going into the clinic, and one of them calls out, “Hey Sue.” That’s how I am present. I respond to the language they speak.
One girl who had been with us at the Children’s Hospital for five years was transitioned to the adult palliative care ward. The day that she found out that she had relapsed a second time, the nurse got a hold of me and I remember we all sat there and held hands while the doctor and nurse told them what was going on. I will always remember this. After they left, the girl and I talked, all that soul searching stuff, and she asked, “Why did this happen to me?” She was a fighter and she wanted to know why.
Q: And what is the answer?
A: I have learned that there is no answer. Life is unfair. It’s how we handle it that counts. Life sucks at times and there is no rhyme or reason. I really don’t believe there is any answer that will satisfy us.
When you have an announcement of cancer in your life, it strips you down to the bare bones and your world is knocked out of kilter. You rethink your priorities. Often what you thought was important becomes secondary. One of the moms told me this morning, “I have stopped worrying about the small things, and this is a good feeling.”
Q: How do you help people when their world is out of kilter like that?
A: You can’t have any pre-judgments. You don’t know how people will respond. It’s about being there with people. The cup of coffee, the Kleenex, the bowl to throw up in. It’s about being accepted into a world of intimacy.
I help them take it one step at a time without pushing them. It’s not about my agenda, it’s about them. This morning in clinic I went to see a patient with a brain tumor who just had an operation. We talked about our treasure boxes and how we open them up and we bring our special moments out to remember, moments we might not have noticed before the cancer diagnosis. It’s not just what we say, but how we live now. It’s about playing with the kids, it’s about a text that says “I am thinking of you and I love you”. These are the things that become really important.
If cancer treatment has now become palliative care, there is no choice. Death is coming and you cannot turn that around. We have to find ways to go through it and find something that we feel we have a little bit of control over. So some of the work is teaching – for example, how do we handle today? Do we get extra 30 minutes of sleep so we can get through? It’s practical stuff. It’s about sitting still for five minutes, it’s about asking someone to listen to you so you can get the garbage out. That’s spiritual care.