Palliative Care NSW Volunteer Support Services Programme
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The eternal thread of compassion

A few weeks ago at our Volunteer Conference we had the lovely Joanna Wagg present an abstract. We had a lot of people comment on what an impact it had on them.

Jo, who has a background in nursing and disability support, volunteers at Bear Cottage in Manly.  Bear Cottage is the only children’s hospice in NSW. It provides support, respite and end-of-life care for children with life-limiting conditions and their families, in a warm homelike environment.

Jo has kindly shared with us her presentation notes which we have made  available here for all to enjoy.

NSW Palliative Care Volunteer Conference
Tuesday 4.6.2019
The eternal thread of compassion

Where do I begin, stepping into Bear Cottage for the first time since my graduation as a volunteer? Rachel, our volunteer manager puts together a comprehensive and fully inclusive orientation program that informs all new volunteers well, but the reality of being here on my first day is oh-so-different!

How do I find my place amongst an ever-changing population of young patients experiencing life-limiting conditions, whilst confronting the inevitable emotional fragility and sadness of their parents? The siblings, who carry a heavy emotional burden, show a range of behaviours that are complex; silently they cry out in unmet need, expressing their confusion, anger and longing. The grieving relatives, present for their loved ones, lack a compass to interpret their held-in-check emotions, a tightly-knit solidarity to support their family members. The as-yet unmet nursing, kitchen and housekeeping staff, various therapists, medical staff and other volunteers, both new and experienced, possess an air of knowing, of being comfortable, familiar and I want to feel the same way. Where is my place?

Canning, Rosenberg and Yates (2007) observe that therapeutic relationships for nurses and patients with life-limiting illness are at the core of meaningful palliative care. I acknowledge and understand this. But what about volunteers in a palliative care setting? How do we form a therapeutic emotional, intellectual, spiritual and physical relationship with palliative care patients and families? Each relationship needs to be formed, as it were, ‘on-the-run’, as our rostered times at Bear Cottage present different residents each time, especially when we first begin our volunteering role. Each patient and family has unique needs. Can a volunteer’s relationship enhance the patient’s experience and offer something in addition to their medical needs being met?

Yes, yes, yes I say, absolutely, hands down. But the development of this enhancing therapeutic experience needs to be honed and nurtured individually by each volunteer. How is this achieved?

Actually, I was to find it surprisingly difficult, during my first few volunteering encounters at Bear Cottage, the Children Hospice at Manly (part of the Sydney Children’s Hospital Network). I felt like a fish out of water, gasping breathlessly for air; a wide-eyed and terrified victim thrown into the lion’s pit, without armour or weapon for protection. Certainly, I felt absolutely eligible and competent for my role, being experienced with nursing and caregiving for my patients, new mothers and babies, for the elderly, the disabled and albeit a mother of two. Fortunately, my internal thread of compassion is ever-present and sustaining, offering what I need, every time. Inside Bear Cottage there is a familiarity that reassures me, having worked as a Registered Nurse for my entire career in a host of different settings. But here I am a volunteer, the new kid on the block, and this is a completely different experience. How do I, a palliative care volunteer, contain my distress at being amongst palliative care children whilst being emotionally present, for the patient and family?

Why am I here, you might ask? What is my motivation, and why so clumsy and awkward, when I’ve had a long-held dream to be part of this very place, the hallowed corridors of Bear Cottage? As the rostered-on volunteer, I am performing whatever role I have been allocated. Other volunteers are here, doing their own role-of-the-day. The clinical staff have medical and nursing knowledge, with supervision, access to the patient notes, an awareness of boundaries and balance between caring and looking after themselves, with realistic expectations (Canning, Rosenberg and Yates). How do volunteers develop a therapeutic relationship and preserve their emotional integrity whilst remaining sensitive and appropriate? The thread of compassion questions itself.

Growing up I was one of those girls who befriended the misfits at school. There was dear awkward Margaret, the daughter of displaced Russian parents living in a dusty old shop, who wore thick dark-rimmed spectacles and was quietly reserved by nature; Jane the mid-term new girl who had a mysterious private gynaecological surgical history; curly-headed, sharp-featured Gayleen who lived in a housing commission place, but unusually attended our privileged private girls’ school; the German Professor Hunzika’s daughter, Anita, whose small flat in a cramped high-rise block was the first I’d ever seen, and whose mother worked full-time at the university, unusual in my protected young lifetime’s experience. Also Marilyn, born to a postmenopausal mother who never really recovered from the shock. Marilyn was cosseted, over-protected and chaperoned to school by her maiden aunt, as though she were a piece of priceless Dresden china, undisturbed in the locked glass-fronted china cabinet, lest the china be broken. Marilyn was teased and taunted wherever she went, so I protected her when it didn’t interfere with my own agenda. The thread tugs a little.

I was drawn to these lost girls, I felt a connection with them that was real, they affirmed my own presence at the school, my witness to the hapless downtrodden and needy. I joined TAPS, the Tasmanian Animal Protection Society, protector of voiceless animals and advocate for their needs. I responded to the plaintiff cries in the night of any new kitten or puppy in our household. I couldn’t bear to hear them calling desperately for their absent mother and siblings. I was compelled to help them, despite the iciness of a Tasmanian winter’s night. I held them, comforted them and kept them warm. The thread meanders and continues.

Great was my confusion and impotence when my parents endorsed the placing of two wooden slotted boxes, containing our pair of loved family cats, on the roof rack of the family station wagon. The boxes were tied down with rope for the three hour journey, in all weathers, to our remote holiday destination, deep in the bush near Highcroft, on the Tasman Peninsula. I could not reconcile a love for animals with such barbaric travelling conditions, but my father, a General Practitioner nonetheless, just smirked and said they were only cats, they would be fine. At least we didn’t have to listen to their yowling, he grumbled, as we suffered his erratic driving, but I felt guilty and embarrassed at the sad spectacle on the roof. On the other hand, our beloved golden Labrador, Betsy, was afforded the comfortable floor behind the front car seat, where she panted and dribbled wetly over us, much to my annoyance. Was she, of canine origin, somehow superior to the frozen cats on the roof? The thread squeezes my heart.

It was exactly these experiences and questions that came with me, on an unnamed thread, when I started my nursing career. I lived by the unrevealed philosophy that the quality of the emotional connection with my patients was as important as the medical treatment they received. This belief got me into trouble constantly; my time management and jobs-list were always in question, albeit my consideration and empathy for the suffering of others came first. I was continually frustrated with opposing agendas and witnessed with painful disappointment the dearth of human connection when needed most. The thread bends and twists.

We have a son on the autism spectrum, and now a little granddaughter also on the spectrum. As his parents, we have always advocated for his best interests. It has been a very hard lesson, but I have willingly gone the extra distance, confronted authority when necessary and feel compassion for our son’s difficulties, as well as others, with different needs from my own. I bring this strength to Bear Cottage. To simply be with someone, knowing that I can’t fix their situation, but can walk gently beside each child and family at Bear Cottage while I’m here, is why I’m here. Practice has made this journey easier. My personal life stays outside the front door; it will wait. I need to be present inside these walls. The thread reverberates.

To survive as a new volunteer, I found that active listening, connecting, sharing and engaging, whilst accepting my own imperfections and inadequacies, was key to breaking the ice. Such a volunteering role is not about me, which Kate Englebrecht of Palliative Care NSW also talked about yesterday in a concurrent session at the Atura Blacktown conference. As palliative care volunteers, we need to be able to confront not-knowing what to do or say sometimes, while engaging our authentic self to bridge the gap. That isn’t always easy and there is an ambiguity between the familiarity of my usual behaviour and bearing and the vulnerability of a palliative care volunteer who must assess each different situation and respond appropriately. It can be uncomfortable. It’s about here and now, warts and all, disquiet notwithstanding. Giving myself openly and without judgement. The result? Bountiful reward – always. The thread is nurtured.

When I have been less than emotionally available at Bear Cottage, due to some life issue, I have felt awkward and uncomfortable. So it has been about finding my own place of serenity, sitting with unease and the fear of silence and knowing that IT WILL BE OK. Some mindfulness, witnessing my breath and knowing that we don’t always get it right, but that it’s not about perfection, my volunteering role is not about me, but rather, by default, that is precisely who benefits – I reap rewards. The thread sustains.

Each child I meet at Bear Cottage is part of a unique family with complex stories; both how they have arrived here and how they live with the realities of their situation. Families may appear well adjusted and accepting of their child’s life-limiting condition, or clearly struggling, searching for answers that no-one can give them. They must battle changes in their child that are unpredictable, unwelcome and incomprehensible. In my volunteering role, I am privileged to be invited into their space, to offer compassion, and receive what they choose to share. I don’t take this gift lightly. I embrace their story and reflect it back, perhaps offering a different perspective to their anguish. The thread is eternal.

Joanna Wagg

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