Our second COVID0-19 Series blog is by Gilda Davis @GMD2019
She is the Senior Lecturer in Children and Young Peoples Nursing, School of Health and Social Wellbeing, University of the West of England; and PhD student, University of Worcester
The underpinning philosophy of children’s palliative care is the provision of high quality care for all children with a life-limiting or life-threatening condition (LLC and LTC respectively) and their families (Together for Short Lives 2018). An important component of this are children’s hospices (Dunbar et al 2019).
Like all other aspects of health care support, Covid and the lockdowns have impacted upon the care given by children’s hospices. Studies about the provision of palliative care during this time are emerging, although these primarily focus on adult services (Pearce et al 2021; Dunleavy et al 2021, Onwuteaka-Philipsen et al).
Colleagues working in children’s hospices and hospice community services have spoken about how difficult they have found the past 18 months. Core to the service they provide is the provision of respite to children with LLCs and LTCs, which was curtailed with hospices only offering residential stays to children needing end of life care. Children’s hospices try to provide an environment where family and friends can spend time with the child and their family, supporting each other during the child’s last days of life (Dunbar 2019). Limiting the numbers of family and friends worried staff that they were not offering the high level of family care they were used to providing.
Despite this, hospices were able to support families effectively, especially where the relationship had already been established. For instance, a colleague spoke about the end of life care of a child with a terminal illness. A relationship with the hospice staff and the child and his family had been established prior to the first lockdown. Their choice for his place of death was the family home and this was achieved with the support of the hospice community team. The wearing of PPE was challenging for staff – making eye contact and communicating with the dying boy and his grieving family through goggles and wearing an FP3 mask – and challenging for the family, however keeping the child and his family at the centre of the team’s planning, ensured that despite the pandemic, care was carried out with compassion and skill.
In contrast, another child was referred for hospice care in a very different situation – the country in lockdown, the late diagnosis of the girl’s terminal disease and the parents’ denial of her poor prognosis until the night before her death – resulted in dissimilar staff perceptions. Whist challenges like these are not unusual for palliative care teams, trying to build a relationship with the child and her parents and unpick their concerns and anxieties whilst enabling them to support each other, was further complicated by not being able to touch without gloves, and communicate without goggles and masks. Whilst her symptom management was effective, her death left that team feeling that they let the family down by not being able to care for them as they normally do.
Other issues such as accessing pharmacy for medications, covid testing of both staff and families, the absence of non-clinical staff (and their slow re-introduction), have added to the challenges of these past 18 months. Prior to this pandemic, many hospices did not ask their staff to wear uniforms, but along with LFT tests, the wearing of uniforms as well as PPE has become the new normal.
Whilst end of life care is at the core of hospice care, the provision of respite care to children who meet the referral criteria is the daily work, and not being able to provide this has caused anxiety amongst the clinical staff as they are very aware of how essential this is to the wellbeing of the parents and the family.
Dunbar H, Carter B, Brown J (2019) Coming ‘Home’: Place bonding for parents accessing or considering hospice based respite Health and Place 57 101-106
Dunleavy L, Preston N, Bajwah S, Bradshaw A, Cripps R, Fraser L, Maddocks M, Hocaoglu M, Murtagh F, Oluyase A, Sleeman K, Higginson I, Walshe C (2021) ‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to Covid 19. Results from a multinational survey (CovPall) Palliative Medicine 35(5) 814-829
Onwuteaka-Philipsen B, Pasman H, Korfage I, Witkamp e, Zee M, van Lent L, Goossensen A, van der Heide A (2021) Dying in times of the coronavirus: An online survey among healthcare professionals about end-of-life care patients dying with and without COVID-19 (the CO-LIVE study) Palliatve Medicine 35(5) 830-842
Pearce C, Honey J, Lovick R, Creamer N, Henry C, Langford A, Stobert M, Barclay S (2021) ‘A silent epidemic of grief’: a survey of bereavement care provision in the UK and Ireland during the COVID-19 pandemic BMJ Open 11
Together for Short Lives (2018) 4th ed A Guide to Children’s Palliative Care Bristol, Together for Short Lives