Systemic intersections: The interdisciplinary team in paediatric palliative care
by Lesley Palmer (Drama Therapy) and Mari Stevens (Music Therapy)
As clinicians, we exist as one part of a greater whole, a complex system of care for children who are facing death. We are making music and stories, dancing and painting a way through a landscape of medical intervention, family distress, and under-resourced communities, whilst also navigating multi-level interconnected systems.
The team consists of two social workers, an auxiliary social worker, three paediatricians, a medical officer, a nurse, two arts therapists, family counsellor, aroma massage therapist, an administration team, a receptionist and cleaner. To illustrate our work, we describe two case vignettes and share the reflections of our colleagues on the place of arts therapy within our interdisciplinary team and the challenges and possibilities that are inherent to a diverse and collaborative healthcare service.
We invited members of our organisation to explore, through image making and metaphor, how they see the systems we form part of, in order to give space for deeper understanding of the complexities, challenges and opportunities we face. Emerging from this exercise, we are working with a healing image for us to live into. In this, we see the intersecting systems around a child depicted as a forest with a flourishing mycelium network ensuring the forest remains healthy, that necessary feedback channels are maintained, and that each part is acknowledged for serving an essential part of the whole.
Case vignettes of families seen by the team
An inherent principle in paediatric palliative care is to understand that everybody around a sick child is impacted by the illness: parents, siblings and sometimes extended family members. Through the diverse interdisciplinary team, we can offer a range of specialist support services to meet the complex and individualised needs of our families.
Supporting Will
Will (pseudonym) is a 10-year-old child with a serious gastrointestinal disorder that is a progressive condition with no known cure. Medical management aims to alleviate symptoms and improve quality of life. With his symptoms progressing quite fast and increased admissions, he was referred by the children’s hospital to our organisation for early palliative intervention. His family is without food security and lives in an area impacted by crime and violence. He also experienced extreme bullying by neighbours resulting in him having to be kept mostly inside the house, and has experienced social isolation. He lost his father when he was 4.
Through our interdisciplinary team, we have been able to offer:
● Medical counselling for Will’s mother, uncle, grandparent, siblings and cousins which was provided by a medical officer, in which clear information was shared about what the condition is and that we have no cure and he will ultimately die from it. Questions were invited and all family members encouraged to share the impact his health has had on them individually.
● Family counselling for Will’s mother has supported her coming to terms with her son’s illness and prognosis, as well as holding a safe space for her to process a range of psychosocial stressors.
● Monthly dramatherapy sessions provided for Will to have his own safe space, to process the complex and multilayered challenges in his life, and to strengthen his inner resources by connecting him to his play and creativity. Through story-making processes, he has been able to express his social isolation and difficulties to trust, and he has grappled with the theme of death and loss.
● Massage therapy for Will’s mother to assist her in managing her stress. She had never experienced this before.
● Furthermore, services are being explored whereby the family can receive support from a partner organisation to assist with food security.
● Will has also been referred to Reach for a Dream.
With such a team approach in place, and all those around the child having met and engaged with our team, we have built a foundation of support for the family that they can lean into as Will’s illness progresses.
Journeying with Anathi
We met Anathi (pseudonym) in 2022 when she was referred for psychosocial support. She was eleven at the time and diagnosed with stage 4 kidney disease. Unfortunately, Anathi would not receive a transplant. Our role as the interdisciplinary team was to counsel and support Anathi and her mother, and compile a care plan which included holistic care goals and symptom management to make sure she has the best quality of life.
At our clinic, Anathi received music therapy, enjoyed aroma massage therapy and was seen by the doctor. Our social auxiliary worker supported and engaged with her mother. Anathi enjoyed writing songs and music and on one occasion wrote about the rolling hills in her village in the Eastern Cape. It became clear that she missed her home, and despite receiving good care at our partnering organization, a children’s home that specialises in caring for chronically ill children, she was desperate to go back to the Eastern Cape. Her request was honoured, plans were set in motion and within a few months, with the help of our organisation’s transport fund, she was in the Eastern Cape.
When Anathi came for her medical check-ups at the children’s hospital, she would visit her support team at our organisation. We continued to help her process her losses, work through her questions, play and laugh and essentially, journey together. Anathi chose her memory box which we filled with drawings, prints and photos. During her last visit in 2023, it was clear that she was becoming very ill. We knew we would not see her again; she also knew things were changing fast. The diverse team, a slow-paced clinic space and invested team members made it possible to have difficult conversations, process and contain heavy emotions and make plans for important medical care at home. We made sure to spend all the necessary time with Anathi and her mom, which even included a knitting session with our family counsellor, as she wanted to learn to knit before she returned home. It is always an immense privilege to be involved with the young lives we get to witness. And in the process of trying to lighten the weight of their journey, we ourselves are also impacted and changed.
Navigating interdisciplinary collaboration
“Diversity: the art of thinking independently together” (Malcolm Forbes)
Working as part of an interdisciplinary team in the context of families who face the devastating effects of having a child with life threatening illness compounded by socio-economic crises, is an essential necessity. ‘Staying in your lane’, being able to focus on doing what you do well, means you can do the piece of the work that is yours with great depth because you have capacity for it and are not spread too thin. With more than one set of eyes on a family we can hold more, having colleagues with specialised focus to both notice and address particular needs.
As a therapist working within a team, the psychic load becomes more manageable. Whereas we hold the whole picture of each child in mind, we don’t individually have to grapple with solutions pertaining to the practical, medical and extent of social challenges our clients face. As therapists we experience improved wellbeing and capacity in feeling the support of the team, which enhances the work itself and its sustainability.
Furthermore, having set spaces to think with colleagues in both formal and ad hoc meetings, deepens the possibility of the work. Fortnightly psychosocial team meetings and weekly interdisciplinary team meetings are important collaborative spaces that influence the functioning of the team and the service we can provide through the mindful coordination of all the various moving parts.
The differences that come with diversity
A primary challenge that we are consciously aware of and often reflect on as a team, is the intrinsically different paces of the medical and psychosocial teams. Medical personnel seem to work quicker, be result focussed and are driven by a sense of outcome. The psychosocial team members generally take more time for discussion and thinking through cases, are more process oriented and are guided more by questions than solutions. Relating to this, the medical team seem naturally more action oriented, whereas the psychosocial team is predominantly reflection oriented.
Being a holistic approach to patient care, blurred boundaries of work can be inherent in the palliative model as the speciality of the work lies in the intersection between the medical and psychosocial. An example is the necessity for doctors to often engage in a more counselling role, which has the possibility to create duplication of services and, on occasion, can leave patients being guided in different directions.
Our sense is that linear outcomes within the biomedical field can more easily be understood by us, whereas the subtleties of our psychosocial process may be less graspable.
Colleagues have their say
We asked our colleagues to anonymously reflect on their experience of being in an interdisciplinary team and particularly working alongside arts therapists.
“It is a privilege to work with arts therapists especially in a paediatric setting. Their work provides specialist support, care and therapy to individuals (both children and adults) who struggle to verbalise their hurt, trauma and pain etc”.
“Not all members of the team are trained in psychotherapy and thus the arts therapists are better suited to support patients with complex trauma and emotional/spiritual/social/cultural pain. Their input is key to how to best support a patient and family. Arts therapists are able to tap into the deep psyche and emotional issues of patients which other members of the team are often not skilled to access or support”.
Furthermore, colleagues support our view that inclusion of creative arts therapists broadens the scope of our offering to patients:
“Working alongside the two of you has created an extra dimension in terms of what can be offered to our families as well as broadening the scope of holistic care”
“I believe it is the best way to provide holistic care to patients and should be practised in all areas of health”.
Pertinently one colleague reflects:
“I feel like if there were no arts therapists, we would have missed a lot of things that are affecting the patient”.
An unexpected reflection by colleagues relates to the impact of skill transfer as an added benefit:
“Working with arts therapists enhances not only the service I am able to give to my patients but improves and develops my own skills in understanding and providing psychosocial support”.
“…the extra professional and creative benefits that are available to us as colleagues to expand our knowledge & insight”.
Some of the perceived challenges noted by the medical team members mirror reflections from within the psychosocial team – which itself is valuable as it points to a shared consciousness in the organisation.
“The challenges for me are trying to find a smooth way for the team to combine the often different approaches that the medical and psychosocial teams take in terms of documentation and follow up and continued care. I perceive the medical as being more generic in its approach- certain “tick boxes” that need to be achieved, whereas psychosocial management is much more patient-led and organic. There are obviously specific structures in place to suit this kind of care, but I think trying to find a system that suits both is challenging”.
Another reflection from a medical perspective is one worth chewing on:
“I also think that often the ‘other stuff’ that doesn’t fall into strictly medical or psychosocial care historically ends up being the medical team’s job to sort out as they are more open to doing tasks outside of their scope of practice which can make ownership of responsibility of patients a perceived challenge.”
An opposing assumption from the psychosocial team is that we are more likely to take on tasks outside of our scope! This may indicate that, even within the support of an interdisciplinary and relatively well-resourced team, there are aspects of need in our patient population that we are still not addressing. Or it may indicate a discrepancy in team members’ understanding and expectation of their and others’ perceived role and function. It is worth further inquiry.
Colleagues were asked if there were any requests they had for the arts therapists that would enhance working relationships, and a great idea was offered:
“The opportunity to engage in certain creative arts activities together, under their direction, that would provide an extra dimension of experience as we strive towards an integrative service where all aspects are equally but differently important”.
Furthermore, there was a wish expressed to have arts therapists working at the service five days a week.
A drama therapist and Music Therapist reflect on working alongside one another:
“What a joy not having to explain your approach or what you mean! The shared language and orientation is a gift in a high-pressure working environment, where one can offer and receive peer supervision in the moment. There is also such a benefit in sharing an enormous caseload knowing there’s someone who works similarly to you. Siblings often benefit from the parallel service of Drama and Music Therapy, so they have a shared yet different experience of support.”
Conclusion
Arts Therapists hold an important and necessary function in a paediatric palliative care organisation, where the nuance of life and death conversations can be held in non-verbal and metaphoric expression. Challenges of us working in an interdisciplinary team are around maintaining our identity as arts therapists within a dominant biomedical environment and finding ways of communicating our work whilst at the same time supporting our medical colleagues and being adaptable in a highly collaborative space.
To establish true collaboration and harness the full benefit of a diverse interdisciplinary team requires everyone to stay true to their identity and uphold their needs and values: both arts therapists practising in a biomedical space and medical practitioners viewing their patients through a psychosocial lens. A diverse and highly specialised team inherently poses qualities that at times make for easy synergy and flow, and other times create obstacles that require the team to be flexible in order to reach the desired outcome. This is collaboration and the meaning of ‘interdisciplinary’ versus ‘multidisciplinary’. Within an interdisciplinary approach, knowledge and methods from different disciplines are integrated to shape a new perspective and understanding. It is about constantly navigating and mastering the art of thinking independently together.
There is much more to be said about the systems we exist in, and how our work both impacts and is impacted by them. It is worth noting other aspects of our inquiry: the intersection of the primary care team at the referring hospital, the intersection of the support staff within our organisation, the intersection of the community resources, the global palliative care movement, and the changing funding climate (and imposed agendas).
This is indeed a forest, with each part essential for the health of the whole.
LESLEY PALMER
Lesley Palmer is an HPCSA registered Drama and Movement Therapist (PG Dip 1999, MA 2002, CSSD, UK), Play Therapist (PGDip 2001, University of Roehampton, UK), Family Constellations Therapist (2013, African Constellations, SA) and Clinical Supervisor (2013, SA). Lesley’s work combines creative arts therapy techniques, constellations, active meditation and inquiry methods. Lesley has a special focus on grief, loss, death and dying. Beyond her private work, Lesley’s commitment is to social and individual healing for South Africans affected by trauma, loss and violence who have limited access to therapy, and to this end has been a therapist, performer, facilitator, supervisor, trainer and project developer in a range of contexts in the NPO field. She has trained adults in the caring professions in the arena of child development, play and self-care in South Africa, Zimbabwe, Lebanon and Brazil. She was managing director of the NPO Zakheni Arts Therapy Foundation for 9 years. She co-founded the Bonfire Playback Theatre Company in 2005, and the GroundSpring Playback Theatre Collective in 2018. She is currently a clinical supervisor for drama therapy Interns graduating from the University of the Witwatersrand, a member of the GroundSpring Playback Theatre Company and creative arts therapist at Paedspal paedeatric palliative care service.
MARI STEVENS
Mari Stevens is a music therapist from Cape Town. A diverse private therapy practice and NGO involvement offers her extensive experience in working with complex trauma, psychiatry, and special needs – with both adult and paediatric clients. With a post graduate diploma in paediatric palliative medicine, Mari has been part of the psychotherapy team at Paedspal, a specialist paediatric palliative care organisation, since 2021. Along with the privilege of direct client work, Mari enjoys collaborating with other practitioners in teaching, presenting, and advocating around palliative care, mental health and psychotherapy services and has presented on both local and international platforms.