CHILDREN die in Australia across a wide range of settings, including acute hospitals, neonatal intensive care units, hospices, at home and in regional hospitals. The numbers are small compared with adult care: in 2012, a total of 1700 infants and children died.
Bear Cottage, along with two other hospices – Hummingbird House in Queensland and Very Special Kids in Victoria – is special within the paediatric palliative care landscape, providing inpatient care for children with life-limiting illness, and it is part of the Sydney Children’s Hospital network. Bear Cottage currently provides respite for over 250 families, and between 20 and 30 children die at Bear Cottage every year. Long term bereavement care involves over 500 families. It is intense, demanding and extremely rewarding work.
Our medical team at Bear Cottage is led by a staff paediatrician with GPs on-call. Onsite are palliative care nurses; a social worker with palliative care expertise; art, music and child life therapists; and trained volunteers. The motto of the hospice is “life is for living”. Each family is unique; they come to us with a set of experiences, values and understandings about how life and death work. Embedded within our aim for seamless, integrated whole-person care is the concept of cultural safety.
Cultural safety creates: “an environment … where there is no assault, challenge or denial of … identity … It is about shared respect, shared learning, living and working together with dignity and truly listening”. When a child is the patient, trust must also be built with family members and caregivers.
In practice, it is challenging to achieve cultural safety. The children in our care have a wide range of illnesses, and their families come from diverse nationalities, ethnic groups, cultures, religious or non-faith backgrounds. Their families range in number, ages, gender, impairment, household type, education and economic capability. The care we need to give is urgent, and so rapport building must be rapid and effective. Bear Cottage is the last in a long line of contact with practitioners for these families. At a time when they experience uncertainty and disempowerment, shedding our assumptions about “who they are” and just listening instead means that we can start to give them back a semblance of control.
Cultural safety affects every aspect of care at Bear Cottage. Each family that comes in is allowed flexibility about who and how many people can stay to support the child. Discussions happen at a pace and level of understanding that suit the families. The built environment is home-like and the medical devices are disguised. While staff provide expertise, we also aim to democratise the decision making process, including establishing goals of care and treatment plans.
The Bear Cottage staff often provide everything in the way of practical care for the child, but they share in the decision making and ways in which the family want to spend their last moments together. Families are given the time to be together, creating precious memories. Photography and memento making are part of this.
Treating each child as an individual and their family as unique is challenging and consumes emotion, time and resources. Team members are encouraged to evaluate what they bring to the situation, and how their unconscious biases and cultural understandings have an impact on the care that they are trying to provide. It is intense and personal to provide care for a dying child. The reflective practice allows us to examine areas where optimal care delivery may have not been achieved and how it could be improved.
Studies have shown that good communication is crucial for establishing effective therapeutic relationships. In a hospice, where death is all around, our conversation (formal and informal) must be of an excellent standard: clear, compassionate, and individualised. Each family is different. Some we know over years, and we pick up the threads and continue chatting each time their child is admitted. Some we know for hours or days, and the shock of confronting their child’s death takes a toll on everyone. Whatever the situation, being led by the families’ needs drives our conversational agenda and helps us create a culturally safe environment for them.
“Team huddles” enable us to establish a shared language and pace appropriate to the individual patients and their family. We plan where the conversation will happen and set up the meeting environment accordingly. Someone finds the tissues. When we enter, we ask permission to have the conversation. We share and agree on the agenda and goals for the conversation. If the conversation is to occur with parents, we make sure that someone the family trusts is delegated to look after the child. We introduce each participant (including their role) and we introduce the family members too. We try to ensure that the power dynamic is neutralised by being at eye level or lower and seating of participants is arranged in a way that the family is supported. During the conversations, we test every word as we say it, and acutely watch for their non verbal and verbal responses. We speak slowly and clearly. We work to use culturally appropriate eye contact, mirroring of the patient and/or their family, work to appear unhurried and purposeful. We don’t shy away from words like “death” (unless there is another word more culturally appropriate). While patients often look to the doctor to lead, the role is shared between us, particularly if a team member has already developed the relationship.
As we leave, we make it clear what will happen next, and who to ask for help. After the conversation, we give each other active feedback to help us evaluate the interaction, and to support each other, because we are humans as well as staff members.
It’s hard to stand on the edge of a cliff in a storm. Although the conversations vary, they require the same level of intensity from us as a team. Each of us has a slightly different process to be “entirely present” in that conversation, to shed what went before (even the minute before), and to sit gently in the moment with the family. This practice is essential especially when consideration is given to creating a culturally safe environment. For some of us it is the practice of mindfulness, for others it is the symbol of “knocking at the door” before they enter a room and leaving what went on before for that individual outside of the space. It takes a level of self awareness. Self awareness comes with training, experience and practice of self-care.
We are aware, working in a hospice, that we are privileged with time and resources to care for the children and families we support, and that even then, we don’t always get it right. In other health environments, less consideration has been given to the built environment, the work flow and the caseload, things that disempower patients, make it hard to attempt to develop a culturally safe environment. Despite these limitations, being present in the consultation starts with the attitude of trying to give control back to the patient and their family, with the aim of building trust. We believe the more time taken to do this, the more effective care can be.
Cultural safety is an important tool for enhancing care across paediatric palliative care, indeed across all medicine. It allows a practitioner a framework to shed assumptions, to listen first, to see the person and hear their story, and as a result, deliver more effective care.
Sara Townend is a GP on Sydney’s north side. She also works for Bear Cottage.
Liz Arnott is a Bear Cottage social worker. She provides supportive grief and bereavement counselling and advocacy as well as information and referral and support to the whole family. She has a key role in the programming and running of Bear Cottage Camps for the children, siblings and their families. As well as extensive experience in disability and paediatric palliative care, Liz has a Bachelor of Social Work from the University of Sydney and post-graduate qualifications in management, disability, grief, loss, bereavement and holistic wellness.
The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or MJA InSight unless that is so stated.
To find a doctor, or a job, to use GP Desktop and Doctors Health, book and track your CPD, and buy textbooks and guidelines, visit doctorportal.