A children’s hospice is a very specific context for care. Yet as a crucible for learning about spiritual care, it is an amazing community, offering insights about living with dying which may be helpful to caregivers in a wide variety of settings. Canuck Place in Vancouver is the first free-standing hospice for children in North America. Since 1996 I have worked there as part of a large multidisciplinary team of professionals and volunteers who support hundreds of children with life-limiting conditions, together with their families. In this article I would like to share some of what I have learned there.
What is Canuck Place?
Each year more than 350 families participate in programs offered through Canuck Place. More than 100 staff and 300 volunteers are involved in interdisciplinary collaborative teamwork to support each child, their siblings, and their parents along a palliative care journey that might stretch not just a few months, but for many years. This work is financed through donations and some government grants, so that all programs are without cost to the families.
Canuck Place is "child-centered and family-focused". To that end, our excellent medical and nursing expertise provides a foundation which supports the life goals of the children and families. We are not simply treating diseases, but coming alongside families on a difficult journey, in ways that are designed to give strength and encouragement for life, without being intrusive. Any child referred to us already has a community of caregivers; our role is to join that community in ways which are balanced and helpful.
Canuck Place Children's Hospice is housed in a 90-year old refurbished mansion; our care team includes a schoolteacher (and lively schoolroom), a recreation therapist, social worker, music therapist and counsellors. They support each family at every stage of their experience, alongside teams of volunteers who are available to be with the children in 4-hour shifts 12 hours daily, seven days a week. The house is full of the liveliness of children, offering many opportunities for children and their families to embrace life each day, even if it is also a place where sadness, grief and loss are simply accepted as part of normal life.
Families' and patients' needs
We know that no parent ever wants to be referred to Canuck Place; many have told us they didn't want to come, even for a visit. But we also know that after visiting, most families are deeply grateful for the opportunity to be part of the program.
Some years ago it occurred to me that families expect something different when they come to Canuck Place than what they have experienced in the hospital, but they aren't quite sure what that difference will be. If the disease cannot be reversed, and a referral to a hospice has been offered, "what do we hope for now?"
While these precise words may or may not be used, it is the sentiment parents often express, as they identify priorities, hopes and fears which need to be addressed. Of course in many instances parents are not able to put into words precisely what they think or feel. What they want is not more questions, but practical support, encouragement, and an intangible something which will help them balance. Children want to live, to experience new things, to discover friendships which matter; they are best supported through play or schoolwork or outings which give opportunity for relational support and friendship. The most important element of care in a hospice for children is the quality of relationship. This reflects an essential spiritual value of what it is to be human.
The role of spiritual care
Spiritual care begins with our Family Team Meetings, the baseline for all our work. These are regular meetings with family members, one of our physicians, a nurse, and a member of our counselling team. In the course of an hour of informal conversation, we invite the family to discuss their perceptions, concerns and questions, while our team offers their observations and insights. These meetings follow what we call the PESST model; that is, we try to consider everything that needs to be addressed under five key categories: physical, emotional, social, spiritual, and trajectory. Beyond an exchange of information, there is always the possibility of learning something together that no one knew before the meeting began. As information, insight, and emotion are communicated with sensitivity and openness, the meeting holds the possibility of being transformational, where the participants may perceive and understand in new ways
In this context, spiritual care is not an appendix to medical knowledge or nursing care; rather we are attempting to treat children with challenging medical circumstances as the unique persons they are, within the family structures and community networks which are theirs. As each of us is similarly involved in the journey from birth to death, we all enter these meetings not only as clients and staff, but as fellow-travellers. "Are we human beings on a spiritual journey, or spiritual beings on a human journey?" asked Pierre Teilhard de Chardin. Perhaps we are both, thus needing not only the precision of medical insight and skill, but also the intuition and spiritual sensitivity of those who can identify with us on our journey through life, and beyond.
When parents first encounter Canuck Place they are impressed by the house itself. However, as in any hospice the building plays only a supporting role to the people who together create the matrix of care, which can be such a positive experience for families. The foundation of spiritual care at Canuck Place rests upon the interrelationships of those who work and volunteer together, creating a community of care with the family that is not just a slogan but tangible and real. This matrix of interrelationships is the real "container of care", an interlocking network of expertise, time, energy, and personal caring presence for every family. Because this is true, it is essential for care team members to maintain the same standards of relational wholeness with each other that we wish to offer to the families. Interrelationship is a core spiritual value in this work.
What is spiritual care?
Many people assume that spiritual care is the same as religious care. However, if you were to ask people to compare their sense of the words "religion" and "spirituality", there would be similarities, differences, and places of overlap. Some might say that religion names a reality that comes to us from outside ourselves, while spirituality expresses in inner dimension. Some identify themselves as both religious and spiritual, while others say "I'm spiritual, but not religious at all!" One person said, “religion is a description of a pathway, while spirituality is an experience of the journey. Human being is the experience of striving to make sense of life, working at goals of meaning and significance, whether they are consciously identified or not. In other words, while some people are religious, everyone is spiritual. Thus, my shorthand for spirituality is "meaning-making".
To help volunteers identify characteristics of spiritual care, I offer an experiential learning opportunity: "Remember a time in your life, perhaps when you were a child, when you suffered a great loss. As you remember that time, notice your feelings, hopes, fears. Was there anyone in the picture whom you remember now as being a help to you? How were they helpful? What did they say or do? How were they present to you? What made the difference?" When volunteers engage in this exercise, they often report that the people they remember as being most helpful were somehow just "there", "they listened", "they were non-judgmental". It's not that the helper had a solution to the problem; rather, their very style of being in relationship to the one in distress somehow offered comfort, strength, encouragement, validation, and hope. There is a boldness required in being with one who is suffering, yet it must be expressed in humility and gentleness. Spiritual care involves a willingness to go where angels fear to tread, with grace.
Offering spiritual care
At the heart of spiritual care is a great paradox. On the one hand, the person being cared for may experience a positive encouragement or presence that feels like a gift. On the other hand, the one offering spiritual care may feel he or she has little to say or give, yet remains present and doesn't run away, physically or emotionally. “What I like about this place,” one mom said through tears in a bereavement group, “is that no matter how broken I am, nobody is going to try to fix me, or tell me that it will all be better someday. But I know you’re with me.”
To be willing to enter the life story of another and simply to be with them, whatever the situation or risk, is spiritual care. This might seem the farthest thing from what is needed, wherein lies the paradox. In this sense spiritual care is like being a midwife. The focus is not on you, and you can’t make anything happen yourself, but your presence can be invaluable, because you know something about what might happen. I believe that spiritual life is not about “gaining mastery”, but rather about learning from loss, discovering that personal identity is paradoxically renewed as a result of "letting go" or "giving up". In the same way, spiritual care is a process of accompaniment in which the caregiver is sometimes most helpful when he or she is literally out of "control".
The experience of labour and childbirth is an apt image of spiritual life and therefore suggests appropriate spiritual care. The more a woman learns to cooperate with her body's process of labour, and the less she fights against it, the easier should be the delivery. Similarly, spiritual life often involves a process of learning that feels like letting go, yet results in a sense of positive growth.
Spiritual care is both boldly courageous and intimately humble. It cannot be forced upon another, but only offered, in a kind of relational dance that always allows the other to indicate their willingness to step through a new threshold. The spiritual caregiver must be fearless and immediately prepared to embark on an unknown journey that might involve startling discovery, or looming dread. Yet this courage is present in the most non-threatening personal presence, waiting, ready, willing to engage, yet not owning or pushing the process. It really is a willingness to be comfortable being uncomfortable, caring for another.
The gift of breakdown/crisis
Breakdown sometimes leads to breakthrough. Often conversations about serious or challenging things may stall at thresholds where a person is afraid of his or her own thoughts, or where an unknown, never expressed feeling is crying out to be recognized. Spiritual care must demonstrate a calm open-heartedness that does not flinch at the prospect of a new, even distressing conversational direction. When this is embodied appropriately, the one struggling may feel emboldened also, to risk going through a new door, emotionally or spiritually, now accompanied by another.
Spiritual care is a strenuous engagement at the intersection of opposites, the place where immanence and transcendence meet, where a depth of relationship and of discovery becomes possible even between people who had little previous experience of each other. Immanence is a term used to reflect profound meaning within oneself. Transcendence is the experience of direction or significance or grace from beyond. Learning to pay attention to both is the primary work of spiritual care. The caregiver is intent upon the other person, but also tries to pay attention to larger frameworks of meaning and purpose within which the other’s intense personal experience may find greater clarity or significance. It begins with a listening heart, an attentive mind, but includes an openness to wonder and awe, and the possibility of discovery which may change present meanings. It is vulnerable to the extent of being open to profound change, even transformation.
Ernest Hemmingway once said, "Life wounds us all: afterwards, some are strong in the broken places". The paradox repeatedly expressed by parents and children at Canuck Place Children's Hospice resonates with Hemmingway's sentiment. We can feel so weak and small and broken, yet sometimes experience breakthroughs of insight, light, and wholeness which seem incongruous with our loss and grief. One mom said to me, "My life has changed forever - for the good - because of the suffering of my daughter, and I don't know how to get other people to understand me. I have felt most alive in the worst time of all!" A father of a profoundly handicapped teenager with a progressive disease, nearing death, said, "My wife and I realize that if we had it to do over, we probably wouldn't change anything. We have grown and changed so much; our whole sense of who we are and what life is about has come from these years of struggle and pain, and we can’t imagine who we would be, otherwise."
At the core of spiritual care
Spiritual care is profoundly relational, hard to reduce to a collection of skills. Gifts of spiritual care may in fact be more present in people who themselves have suffered greatly, and who are thereby freed from personal need of accomplishment or fear of failure to be more fully present to others. Spiritual care begins with a listening presence, which is not at all passive. Some people seem naturally gifted with the ability to accompany others in this way. For others, it remains a mystery, that one human being could be with another, with few words or actions, and yet seem to make a tangible difference.
The word "hospice" is related to the word hospitality; spiritual care is a kind of hospitality, in which the caregiver creates space for another, without expectation or pressure, yet which engenders acceptance, opportunity, freedom, and the possibility of change in experience or perspective or both.
In a children’s hospice like Canuck Place there are endless stories that could be shared to illustrate spiritual care. Some children seem to have wisdom beyond understanding, yet remain very child-like in their everyday experience. Parents may discover a gift in friendship with another parent, where the sharing of woundedness in grief creates a bond of powerful strength that gives hope and new energy. As caregiver, I sometimes experience in the midst of profound family brokenness what I can only call a mysterious wholeness underneath or in the midst of them. Joy and sorrow are not mutually exclusive, but strangely interwoven in the fabric of life. Spiritual care in this setting is not practiced as an independent discipline, but as an expression of the heart and spirit and mindfulness of a team of people who are willing to risk personal growth through shared pain.
Love transcends all
Whether you are comfortable using religious or spiritual categories or not, we are all somehow bound up together in this whirling mystery of agony and grace we call life. John Donne was right when he wrote that “no man is an island, entire of itself…” Yet none of us can live any other life than our own; therefore we cannot judge another’s experience of life solely by our own. But the interpersonal distances that may seem so great can sometimes be transcended more readily by a smile or touch than with words, as though the spiritual essence of life was lighter than a feather.
Above all, there is a mystery in love which interlaces all spiritual experience, even as it is central to all human life. Where there is love between people, we have seen breakthroughs of pain-filled relationship breakdown. Love seems to create invisible pathways of energy which can delay dying, comfort the inconsolable, and give new meaning to a life that seems dead. The book of Ecclesiastes conveys the thought that is beneath and around and infused through so much of the experience of living with dying in a hospice for children: love is stronger than death. Spiritual care is an affirmation of that truth.