[Yeukai Mellary Chimpelo]

#89395

“Preserving dignity in palliative care in Children Palliative Care”

If I may introduce to you Baby Tinkerbell:
Baby Tinker was little baba born remature baby at 28 weeks, the first of twins. Her birth weight was 580g. Admitted to the neonatal high care ward and initiated on high flow oxygen. At day two life it was found that Baby Tinkerbell had jaundice and renal dysfunction, she also had multiple episodes of hypothermia complicated by apnoeas and increased difficulty with breathing. Physically, her skin was thin and frail and she had multiple abrasions and bruises from a difficult delivery. Baby Tinkerbell lived for 8 days. In those days she endured multiple investigations, medication and supportive medical care. Due to infection control protocols her parents were only able to visit her twice a day. Tinkerbells twin sister died at birth.This little human comes to mind because so many principles of care felt conflicting: do we give nephrotoxic antibiotics to a neonate with such immature kidneys, do we feed or withhold feeding? Do we do kangaroo care or do we put baby in an open incubator? Do we prolong life or do we improve quality of life?

When Tinkerbell first came to the ward the nurse, Nurse A, instructed that Tinkerbell should only have minimal handling with minimal to no painful procedures. That this little baby just needs for us (As doctors) to give her a chance to catch up to the outside world. With in the first hour of arrival though, blood investigations were done for her as well as multiple unsuccessful attempts at a drip followed by a central line. These were all life saving inventions needed to assess and manage her appropriately. So why the dilemma?

The definition of ‘dignity’ according to the Oxford dictionary is the state or quality of being worthy of honour or respect.As has been discussed, palliative care in children is “the active total care of the child’s psychological, physical and social distress’ (WHO 2023 – Palliative care for childrenWorld Health Organization (WHO)https://www.who.int › … › Newsroom › Fact sheets › item). The question this assignment poses is ‘how to persevere dignity while delivering this care.

Cai et al. BMC Palliative Care (2023) discuss the Donna Hicks Dignity Model which describes the ten essential elements of dignity. This model is a frame work that guides health care providers in improving communication, conflict resolution, and building trust between a patient and carer. Cai et al. break down the elements of palliative care in a terminally ill child in order to create a dignity model suited to children.

In Baby Tinkerbell we can explore the Dignity Model and how it was applied to her and how it could have been better applied to her. For the purpose of this exercise I discuss the physical symptoms and psychological symptoms briefly to examine how dignity may play a role in a childs care as well as how it may be compromised.

Physical symptoms

For baby Tinkerbell her biggest ailments would have been her tiny weight, jaundice – and its complications if not treated, temperature dysregulation – and its complications, her kidney dysfunction. One of the questions posed by Cai et al. is how do health care providers identify the symptom? Firstly for Tinkerbell this would require serial blood tests which would require painful and invasive procedure.

Cai et al speak to a debate about whether children have a sense of dignity. This question almost seems counterintuitive to what palliative care aims to do. To identify and recognise Baby Tinkerbells pain despite her inability to communicate the degree of pain should be paramount in every assessment and management plan geared towards her care. Neonates, like any child, are able to perceive pain, pre-term infants are at higher risk of experiencing pain due to the immature pain modulation (Perry et al.). For Baby Tinker, Nurse A was an advocate to maintaining baby Tinkers dignity by expressing her need for minimal handling.That is one example at how her dignity could be preserved, by limiting the number of painful procedures as well as by optimising her pain management prior and during procedures. In order to manage Tinkerbells symptoms would necessitate doing investigations but prioritising pain management as well as minimising exposure to pain and cold dry environments. One could optimise the health of her skin and minimising the number of infestations required.

Psychological symptoms

If we consider palliative care as a continuum of care then it would make sense that one should plan or determine the forseeable consequences of a child’s illness (life threatening or life limiting). Hall and Andal (Pain Management in Newborns2015) discuss the long term effects of poor pain management during the short term period. Poor pain management may impact a child psychologically as well as their behaviour and cognition in their formative years.

Palliative care as an umbrella also encampasses the family. Assessing and addressing the psychosocial needs of the parents or guardians is also paramount to maintaining a childs dignity.

Tinkerbell, being a premature baby may have benefited from kangaroo care as well small feeds (breast milk is always best) but a mother in duress may not be able to express milk if she is mental and emotionally not well. Factors such as post party depression may also make it difficult for a mom, or dad, to visit the child the affection that is some times lacking in high care or ward settings.

Tinkerbells parents were quite present and sadly overly optimistic about their childs outcomes. For her (And her family) bereavement counselling and early introduction to a palliative care team may have facilitated maintaining Tinkersbells dignity by helping her family and her care givers put in place an end of life plan that may have allowed her parents more time with their baby as well as giving Tinkerbell a more calm, quiet and nurturing environment. But when would be the right time, would that not then be withdrawing care – especially when her parents are so hopeful and optimistic for her survival.

Duarte Enes (2003) relationships and belonging, as well as having control as elements that contribute to a patients dignity. I think in neonates and children alike, health care providers try avoid giving too much or all of the information in fear of litigation or being accused of giving up care for their child. I believe that if one took a moment to break bad news in a step wise manner it would allow for parents to “hope for the best and prepare for the worst” and ultimately advocate for their childs dignity.

Donna Hicks rightly stated “Dignity is something we all deserve no matter what we do. It is the starting point for the way we treat one another.” I believe preserving a childs dignity, especially during a life limiting or life threatening illness, is part in parcel with preserving one owns dignity. Removing or m minimising pain maintains our oath to do no harm. Limiting exposure to cold environment should be second nature, as it is quite literally our own survival mechanism to protect ourselves from the elements. Communicating and restoring autonomy to the child as well as their parents or guardians optimises a health care providers ability to be conscious and cognitive of the emotional and spiritual needs of the child thus keeping that carer conscious of how to protect and preserve that childs dignity. Silence – or inability to speak for oneself – should not be a reason to treat any human (no matter how big or small) with any less dignity than the next human.

Roald Dahl (Matilda, 1988) once said Don’t worry about the bits you can’t understand. The term dignity seems simple in theory but some may find it daunting in practise simply because child and neonates may not be able to communicate like older people may. But as so many have stated, dignity is integral to who and how we are as humans. Hopefully by paying attention to the subtleties of our patients and their families we might just be able to give what we already have built in us.

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