VIEWPOINT
Reflections on some learning from the Covid-19 pandemic: support for parents of children facing serious parental illness and death needs to be integral to health care
Dr Catriona Macpherson
catriona.macpherson2@nhs.scot
The
Covid-19 pandemic has further highlighted the significance of pre-bereavement
care for families and children facing parental death. Holistic family care,
including support for the preparation of dependents, is core to specialist
palliative care services in Scotland, but was hugely challenging during the
height of the pandemic. It also exposed the challenges in all areas of acute
healthcare for families with children, including intensive care departments.
Parents need specific support appropriate to their children’s needs. This
includes how to share information with their children, and how to help their
children to express their opinions and share their emotional responses about
their experience. Parental bereavement has wide-reaching consequences for the
lives of children and young people, and the ability of the surviving parent to
support them is crucial. Starting to support parents before death provides the
opportunity to ensure children are included in ways that are appropriate for
that family. A discrete service to provide this specialised
pre- and post-bereavement support to families, and training and ongoing support
to practitioners across all areas of hospital and health care, is required.
· National and regional strategy should recognise and name family-focused pre-bereavement care as a priority if the needs and rights of our children and their families facing bereavement are to be met.
· Bereavement training that covers a wider psychosocial remit than procedures following a death should be mandatory for health and social care professionals.
·
All acute healthcare facilities such as
hospitals need to fund a supporting specialist service to train and support
their clinical teams who support families at end-of-life, and to directly
support parents with the most complex needs to support their children’s when
faced with parental, or significant other death.
parental bereavement,
pre-bereavement, children and families, Covid-19
Catriona
Macpherson works as a children and families practitioner in specialist
palliative care in NHS Fife. Fife is unusual in that all
specialist palliative care in hospital, hospice and community is provided by
the NHS, and families with children can be supported from our early
intervention clinic while receiving oncology care through to some considerable
time after bereavement. All services continued to be delivered during the
pandemic by using additional resources of virtual clinics, ‘garden’ visits,
‘drive-by’ visits and outdoor groups in a local therapeutically designed space,
and included support to any families with children and young people parentally
bereaved by Covid-19.
‘The ability
to spend a short period of time with Mike for the 20 days he was a patient in
ICU allowed me to process the severity of his situation, it allowed me time to
tell him all I felt I needed to, I was able to see in person the highs and the
lows of these final few weeks of his life and to help my children to prepare
for the death of their dad. Most importantly, I was able to experience him
squeezing my hand – telling me he loved me in his own way – one last time.’
(Written
communication from Rona, wife of Mike, who died in October 2021 from
Covid-19)
The
question of how to take a family-centred approach
which takes into account the needs of children and young people with parents
facing serious illness, life-limiting disease or trauma, has never been so
present in Scotland. As demonstrated in the Bereavement Charter for Scotland,
bereavement support starts before death, is integral to health and social care
provision, and must involve families in decision-making processes in language
that they can understand (Scottish Care, 2020). Before the Covid-19 pandemic
the call to ‘think family’ was emphasised as part of
a fundamental preventive approach (Arber, 2016), and additionally set childhood
bereavement within a public health perspective (Paul &Vaswani,
2020). The acute care of seriously ill patients and their families forms one
key part of this approach. Holistic care, incorporating preparation of family
dependents for parental death, can be inherently time-consuming, and even
within specialist palliative care, arguably more seasoned in this process, it
remains a core challenge (Kissane, 2017).
During the
Covid-19 pandemic, the Scottish Government provided a series of guidelines recognising the need for a balancing of risks to maintain a
person-centred approach to support for families and carers. Family support was seen as essential to individual
patient care1, and hospital visiting guidance provided
for end-of-life care where practitioners were urged to take as broad an
interpretation as possible, and not to restrict this to final hours, or to
apply ‘blanket’ policies.
Even the
most experienced practitioners can find identifying the last days of life
challenging, especially with younger adults. This was heightened during the
pandemic when having to make decisions about when and how to offer visiting,
arguably a key time for offering family care, and was rarely a purely clinical
matter. The location, travelling time and Covid-19 status of closest family
members were all part of that decision-making, and under extremely challenging
physical and emotional conditions. Clinicians were faced with much more
complicated decisions about how to enact a flexible and compassionate approach
for children visiting a seriously ill parent. The question of who has the right
to make such crucial decisions and how we develop discussions collaboratively
with patients and family members using sub-optimal communication tools (such as
remote technology or mobile phones with unreliable signal) remain a matter for
further reflection and staff education. These experiences brought into sharp
focus the difficulties that practitioners faced in opening conversations with
parents about the information and emotional needs of their children.
The
Scottish Government has approved The United Nations Charter for the Rights of
the Child (UNCRC) toward the process of incorporation into Scottish law. This
includes Article 12 (respect for the views of the child)
which states that ‘Every child has the right to express their views,
feelings and wishes in all matters affecting them, and to have their views
considered and taken seriously’. To ensure children’s rights are met when a
parent has a serious illness, Sweden has incorporated healthcare regulations
that require professionals to consider the needs of children (Karidar et al, 2016). This has long-term implications
because open and honest communication with children is key to improving family
adaptation to parental death (Wray et al, 2022).
Parental
bereavement has wide-reaching consequences for children’s lives and the ability
of the surviving parent to support them is crucial (Worden, 1996). Not every
parent wishes to include their child in the end-of-life process, but many seek
specific support from the health professionals around them (Fearnley
& Bolund, 2017). However, both in Sweden and the
UK, lack of confidence is one of several barriers experienced by professionals
when considering facilitating parents to share age- appropriate information
with their children and often results in patients remaining the primary focus
(Franklin et al, 2019; Karidar et al, 2016). Despite
the aspiration to provide family-focused care, and the knowledge that early
intervention is preferable, developing the skills to work collaboratively with
parents and support them in their preparation of their children, for their
stage of development, and within the very particular circumstances and
experiences they face, is challenging. This is a big ask for practitioners in
acute hospital settings already regularly dealing with critical staffing
shortages and difficulties releasing key members for training.
Practitioners
working and researching in this field have developed guidelines for healthcare
professionals to help parents consider their children’s agency and address
their emotional needs. These stress early intervention where possible, and for
every patient with dependents to be offered support, and not exclusively those
that receive specialist palliative care (Marshall, 2022; Marie Curie, 2021).
Intervention programmes designed to support families
with parental cancer rely on clinicians to offer information routinely (Inhestern et al, 2016). Such programmes
are not available UK-wide, and the difficulties of reaching isolated, or more
vulnerable families with complex needs have been clearly identified (Hanna et
al, 2019).
In
Scotland, we know that childhood bereavement is associated with disadvantage
(Paul & Vaswani, 2020). We risk worsening health
inequalities further if we don’t proactively think through for every family the
offer of parental support to ensure their children receive the information they
need to understand the dying and bereavement process.
If focused
family-centred care is needed for all children who
face the loss of a parent or carer, even more
intensive care and support is required for those families already living with
additional vulnerabilities and where communication is inherently challenging,
or conflictual (Kissane,
2017).
All parents
may waver in their ability to address their child’s need for information, even
when certain they want to do it, and the process is often complicated by their
own co-parenting relationship and their personal history which may include
multiple forms of trauma (Macpherson, 2009). The tension between the needs of
children and parents can create a complex dynamic, and manuals and guidance
need to be treated with caution (Dencker et al, 2019)
Thus, we need to tailor the right approach for each family situation (Kopchak Sheehan et al, 2014), and this often requires the
ability to support individuals to manage nuanced, complex or conflicting needs.
Thus a range of support from short, focused discussions to highly skilled early
intervention is required within service provision.
Currently,
bereavement training for health and social care practitioners is not mandatory.
Training specifically based around care for the family unit, especially where
children face parental or carer loss,
is undeniably scarce in mainstream healthcare. Arguably, all health and social
care practitioners have such training needs, not least because we can be highly
influential in modelling communication and behaviours around serious illness and dying to parents,
young people and children who have not experienced the dying process.
A health
board-funded service to facilitate parents to talk to their children about
potential parental serious illness and death and to co-ordinate training for
practitioners potentially able to facilitate patients
who are parents, can increase practitioner confidence. Such a service also
needs to be able to directly support vulnerable families with more complex
needs and ensure referral to relevant agencies. This could also go some way to
ensuring that services begin to consider their accountability for the rights of
children at a systemic and organisational level.
As shown by
the words of Rona, this need for family members to be alongside, collaborating
with the clinical team cannot be understated. Through the Covid-19 pandemic we
have seen how health professionals understand, and can take on, the feelings of
helplessness that families experience when they have to depend on us for their
loved ones’ care. Clinicians who care for dying people and their families also
need support and this should be part of any specialist service working in this
area. Parents have described feelings of ‘worthlessness’ when not able to
visit, or fully contribute, as if somehow they had
lost their value to the person we call the patient. We have a responsibility as
a community to ensure that close family feel valued
and included when facing parental death.
The
Covid-19 pandemic has further highlighted the need to ensure person-centred and family-focused pre-bereavement support. The
onus is on us to debate how we ensure that the needs and rights of children
facing parental death are met and that they are considered as fundamental to
healthcare for our whole community in Scotland, including those families who do
not have the confidence to ask. Family-focused bereavement care must make it
into national and regional strategy, and it is then for health boards and
health and social care partnerships to ensure that this vital support, delivered
by an appropriately trained and skilled workforce, is accessible to all who
need it.
Arber A
(2016) How do nurses ‘think family’ and support
parents diagnosed with cancer who have dependent children? Asia Pac J Oncol Nurs, 3(3) 214–217. https://doi.org/10.4103/2347-5625.189809.
Dencker
A, Murray SA, Mason B, Rix BA, Bøge
P & Tjørnhøj-Thomsen T (2019) Disrupted
biographies and balancing identities: A qualitative study of cancer patients’
communication with healthcare professionals about dependent children. European
Journal of Cancer Care, 28(2) e12991. https://doi.org/10.1111/ecc.12991.
Fearnley
R & Boland JW (2017) Communication and support from health care
professionals to families, with dependent children, following the diagnosis of
parental
life-limiting
illness: A systematic review. Palliative Care, 31, 212–222.
https://doi.org/10.1177/0269216316655736.
Franklin P,
Arber A, Reed L & Ream E (2018) Health and social care professionals’
experiences of supporting parents and their dependent children during, and
following, the death of a parent: A qualitative review and thematic synthesis.
Palliative Medicine, 33 (1) 49–65.
Hanna J, McCaughan E & Semple C (2019)
Challenges and support needs of parents and children when a parent is at end of
life: A systematic review. Palliative Medicine, 33(8)
1017–1044. https://doi.org/10.1177/0269216319857622.
Inhestern
L, Haller A-C, Wlodarczyk O & Bergelt
C (2016) Psychosocial interventions for families with parental cancer and
barriers and facilitators to implementation and use – a systematic review. PLoS ONE, 11(6) e0156967. https://doi.org/10.1371/journal.pone.0156967.
Karidar
H, Åkesson H & Glasdam
S (2016) A gap between the intention of the Swedish law and interactions
between nurses and children of patients in the field of palliative oncology –
the perspective of nurses. European Journal of Oncology Nursing, 22, 23–29.
Kissane
DW (2017) Under-resourced and under-developed: family-centred care within palliative medicine. Palliative
Medicine, 31, 195–196. https://doi.org/1010.1177/0269216317692908.
Kopchak
Sheehan D, Burke Draucker C, Christ GH, Murray Mayo
M, Heim K & Parish S (2014) Telling adolescents a
parent is dying. J Palliative Medicine, 17(5) 512–20. https://doi.org/1010.1089/jpm.2013.0344.
Macpherson
C (2009) Childhood abuse uncovered in a palliative care audit. Palliative and
Supportive Care, 7, 481–486.
Marie Curie
(2021) A guide for professionals: 10 tips to help parents and carers with a life-limiting illness have conversations with
their children. Available at: http://www.mariecurie.org.uk/globalassets/media/documents/how-we-can-help/pckz/E420b_amend2022_10TopTips_v19.pdf [accessed 3 May 2023].
Marshall S,
Fearnley R, Bristowe K
& Harding R (2022) ‘It’s not just all about the fancy words and the
adults’: Recommendations for practice from a qualitative interview study with
children and young people with a parent with a life-limiting illness’,
Palliative Medicine, 36 (8) 1263–1272. https://doi.org/1010.1177/02692163221105564.
Scottish
Care (2020) A bereavement charter for children and
adults in Scotland. Available at: https://scottishcare.org/bereavement
[accessed 3 May 2023].
Worden WJ
(1996) Children and grief: when a parent dies. Guilford Press.
Wray A, Pickwell-Smith B, Greenley S, Pask S, Olufikayo Bamidele O, Wright B, Murtagh F
& Boland JW (2022) Parental death: a systematic review of support
experiences and needs of children and parent survivors. BMJ
Supportive & Palliative Care. Epub ahead of print. https://doi.org/1010.1136/bmjspcare-2022-003793.