Special Considerations in Paediatric Patients
Decision making around renal replacement therapy Management options for children with ESKD Choice of treatment modality Suitability for renal replacement therapy Renal transplantation The role of paediatric palliative care in paediatric renal supportive care Where consultation may be required with specialty palliative care during renal supportive care Specific paediatric requirements for symptom
Decision making around renal replacement therapy
Management options for children with ESKD
Suitability for renal replacement therapy
The role of paediatric palliative care in paediatric renal supportive care
Where consultation may be required with specialty palliative care during renal supportive care
Specific paediatric requirements for symptom management
Decision making around renal replacement therapy
The overriding ethical principle in paediatrics is the “best interests of the child” standard, where the burden and benefit of an intervention such as RRT are considered [55]. The preferred mode of dialysis in children is peritoneal dialysis as it facilitates normal school, family and play activities [56]. However, each family needs to be assessed in their context to decide which pathway of care would be in their best interest. This assessment is influenced by community infrastructure, family stability, financial resources, existing healthcare systems, compliance record, and quality of life. Methods of communicating information to children at different neurodevelopmental stages and with varying capacity need to be considered.
Management options for children with ESKD [57]
- Pre-emptive kidney transplantation is the ideal treatment for suitable patients and in most cases implies live related kidney transplantation
- Peritoneal dialysis
- Haemodialysis including home haemodialysis
- Renal supportive care without dialysis.
Choice of treatment modality
The choice of treatment modality should be decided upon by considering the following factors [57]:
- Contraindications to a specific form of dialysis
- Caregiver/parent and patient preference (where applicable)
- Quality of life factors of patient and family including siblings
- Treating practitioner’s advice (including nursing and allied health).
Suitability for renal replacement therapy
In lower- and middle-income countries, psychosocial and economic factors may play a larger role in the selection criteria, especially where families are responsible for the financial payment of treatments [58,59]. If a child is not a suitable RRT candidate, one needs to question the value of continuing dialysis, as it has the potential to prolong dying rather than to improving quality of life [55]. The burden of dialysis can outweigh the benefits of providing treatment and violates the medical maxim of maleficence (do no harm). It is appropriate to withdraw or not to initiate dialysis in children if the dialysis is harmful, is of no benefit or prolongs the dying process [60]. Harm may include psychosocial factors such as institutionalisation, family fragmentation, financial destitution or isolation from culture and community.
RSC/PC should then be considered during a shared decision-making process. However, it is essential that the nuclear family and, if possible, the extended family be involved in the decision-making process. Neonates and infants with ESKD and comorbid conditions have a poorer prognosis and are a challenge from an access and surgical aspect. RSC/PC may often be the care pathway for many patients in this group. Psychosocial support, including anticipatory bereavement, peri-natal advance care planning and memory work, should be integrated into their management plan from the time of diagnosis [61]. Shared decision making is encouraged in conjunction with a multidisciplinary team and, potentially, an appointed neutral parent or family member as in the SONG-Kids initiative (www.songinitiative.org) [55].
Renal transplantation
The goal to provide a renal transplant is in line with the United Nations Convention on the Rights of the Child, that states that children have the right to live and enjoy the highest attainable standard of health, and governments should ensure that children survive and develop healthily [62]. Care of a renal graft requires strictly defined boundaries and dependence on life-long compliance to medication, medical surveillance and significant life-style adaptations [63]. Each transplant centre should have its own pathway of care to ensure a successful transplant. Centre-specific guidelines should advocate that patients and their families be fully informed about diagnosis, prognosis and treatment options.
The role of paediatric palliative care in paediatric renal supportive care
Paediatric palliative care (PPC) provides an active approach to reduce disease burden and improve quality of life for both the child and family, through formulation of management plans by a multidisciplinary team. These plans address distressing symptoms in different domains of well-being: physical, spiritual, social, cultural and psychological. Offering early PPC as an integral part of paediatric renal supportive care (RSC) should be done routinely [64,65].
Active palliative care interventions include symptom management, medical and prognostic counselling, facilitation of family meetings and discussion of ethics, advance care planning as well as difficult discussions about end-of-life care. Resuscitation status, terminal care and bereavement support should also be addressed. Families that are receiving RSC often request pain management, clarification of treatment goals and relief from emotional and social distress as well as management of the patient’s siblings [66].
RSC requires clinicians, allied health and psychosocial team members with generalist palliative care training to achieve comprehensive care [64]. PPC specialists are rare in lower- and lower-middle-income countries (LLMIC), so it is imperative that the generalist paediatrician (or general practitioner) adopt a palliative care approach so that it is incorporated into the multidisciplinary team [67]. The demand for generalist health professional knowledge and skills in PPC is growing in response to heightened recognition of the benefits of a palliative approach across the neonatal, paediatric and adolescent lifespan. Unfortunately, there is still no government paediatric palliative care policy implementation in South Africa. Paediatric palliative care in South Africa is currently provided by the NGO sector.
Ongoing advocacy from the nephrology community to develop PPC education projects would elevate the quality of RSC. Themes emerging from PPC education projects include [68]:
- Building capability in PPC
- Developing inter-professional partnerships
- Sustaining staff well-being
- Learning from children and families including siblings.
Delivery of PPC education can range from didactic to interactive engagement and may coincide with developing mentoring models between specialist PPC teams and nephrology teams. Nephrology teams need to develop sustainable models for providing PPC in the RSC pathway.
Table 4. Symptom management in children
| Symptoms | Causes | Drug and doses | Comments |
| Nausea and vomiting | Uraemia, metabolic acidosis, gastric paresis, constipation | Odansetron 2–4 mg, 8-h. Lactulose/sorbitol prn; Movicol half to 1 sachet |
This may have long-term issues and a dietitian’s input is useful. |
| Poor appetite | Uraemia, pill burden, behavioural | Allow child to eat what he/she enjoys and avoid meal battles NG tube, gastrostomy, overnight feeds, cyproheptadine (Ciplactin), 4 mg daily (this is an antihistamine so may cause drowsiness) |
Include family input and do not force food that is not enjoyed. |
| Pain | Depending on region and cause | Fentanyl 1–4 µg/kg/h IVI infusion. Paracetamol 10 mg/kg, 6-h. Gabapentin 2 mg/kg and titrate up |
Morphine is cleared slowly and may accumulate. Valeron drops if available. May need to stagger different drug dosing. |
| Tetany and bone pain | Electrolyte abnormalities, e.g. Ca and Mg | Calcium gluconate 0.5 ml/kg slow IVI. Magnesium chloride 0.4 ml/kg IVI. One-Alpha (1α-hydroxyvitamin D3) 0.25- 1.0 µg/dose oral. |
Ideally, need cardiac monitor or infuse over 1 hour. Attempt to give oral calcium (Calcium Sandoz), half to 1 effervescent tablet per dose. Magnesium [magnesium chloride oral suspension (440 mg = 5 mL), 50 mg/kg/ day in divided doses]. |
| Seizures | PRES (due to hypertension) or electrolyte abnormalities | Treat hypertension or electrolytes. Phenobarbitone 10–20 mg/dose to max of 200 mg per dose/Diazepam 0.1–0.2 mg/kg or IVI titrated slowly per rectum. |
Buccal midazolam 0.1–0.2 mg/kg. |
| Sleep disturbances | Poor sleep–wake cycle, anxiety | Melatonin 3–5 mg/dose. Clonidine 1–2 µg/kg, 8-h and increase to 5 µg/kg. |
Aromatherapy and music therapy also useful. |
| Anxiety and sadness | Play therapy Counsellor Antidepressants (citalopram 10 mg/kg) |
Ideally, psychiatric services should be involved. |
Where consultation may be required with specialty palliative care during renal supportive care
- Management of refractory pain or other symptoms
- Management of more complex depression, anxiety, grief, and existential distress
- Assistance with conflict resolution regarding goals or methods of treatment within families or between staff
- Assistance in addressing cases of near-futility measures
- Support of staff who are caring for these children.
Specific paediatric requirements for symptom management (Table 4)
- In the setting of paediatrics, many drugs may only be available on Section 21 application. In cases where important drugs are not available, advocacy may be required to gain access to these agents.
- Devices for ease of drug administration need to be considered including nasogastric tubes or percutaneous endoscopic gastrostomies (PEGs) inserted for chronic use.
- May need intravenous access for specific symptoms such as tetany.
Wearne, N., Krause, R., Davidson, B., and Brennan, F., 2020. Renal palliative and supportive care in South Africa – A consensus statement. African Journal of Nephrology, 23(1), pp.86-107.