Table 2.
Discussions and decisions reported by parents
| Type of decision | Period in the illness | No of decisions | Details of discussions had and decisions made | Who was involved in each of the cases | |||
|---|---|---|---|---|---|---|---|
| Parentsa | HCPsa | Othersa | Not specified | ||||
| Preferred place of care | Diagnosis | 1 | Hospice for respite | 1 | 1 | 1 (SCP) | – |
| Diagnosis/Unstable | 1 | Hospice for respite | 1 | 1 | – | – | |
| Stable | 2 | Taking the child home after birth/Hospice for respite | 2 | 2 | – | – | |
| Unstable | 5 | Hospice for respite/Taking the child home from hospital (2)/Finding the right place of care when the child could not go home (2) | 5 | 5 | – | – | |
| Unstable/End of life | 1 | Finding the right place of care when the child could not go home | 1 | 1 | – | – | |
| Crisis | 5 | Hospice for respite (2)/Transfer to (mental health) hospital/Care in residential school/Night care | 5 | 5 | 2 (SCP, council, local MPs) | – | |
| End of life | 2 | Hospice for end‐of‐life care/Have the child at home near the end of life | 2 | 2 | – | – | |
| Not specified | 8 | Being at home as much as possible (6)/Hospice for respite or day care (2) | 4 | 4 | – | 4 | |
| Total decisions regarding preferred place of care | 25 | 21 | 21 | 3 | 4 | ||
| Preferred place of death | Unstable | 2 | Transfer to hospice (2) | 2 | 2 | – | – |
| Unstable/end of life | 2 | Bring the child home/Potential transfer from hospital to hospice | 2 | 2 | 1 (SCP) | – | |
| Crisis | 1 | Transfer to hospice | 1 | 1 | – | – | |
| End of life | 4 | Transfer to hospice/Being home near the end (2)/Potential transfer from hospital to hospice | 3 | 3 | – | 1 | |
| Not specified | 4 | Staying home (4) | 3 | 3 | – | 1 | |
| Total decisions regarding preferred place of death | 13 | 11 | 11 | 1 | 2 | ||
| Limitation of treatment | Resuscitation | ||||||
| Diagnosis | 2 | How to treat respiratory problems after birth/No aggressive interventions if the child deteriorated | 2 | 2 | – | – | |
| Diagnosis/revisited periodically | 2 | Not for resuscitation (2) | 2 | 2 | – | – | |
| Unstable | 4 | Up for full resuscitation/Not for resuscitation (3) | 4 | 4 | – | – | |
| Crisis | 2 | Not for resuscitation/Parents went back on previous decision not to resuscitate and asked to bagb the child | 2 | 2 | – | – | |
| End of life | 1 | Whether to use aggressive interventions | 1 | 1 | – | – | |
| Not specified | 3 | Not for resuscitation (3) | 2 | 2 | 1 (family friend) | 1 | |
| Subtotal decisions regarding resuscitation | 14 | 13 | 13 | 1 | 1 | ||
| Nutrition | |||||||
| Diagnosis | 3 | Fitting an NG tube (3) | 0 | 3 | – | – | |
| Stable | 2 | Performing a gastrostomy/Ordering milk | 2 | 2 | – | – | |
| Unstable | 7 | Fitting an NG tube/Performing a gastrostomy/Type of tube to be used for gastrostomy/Special diet/Pump feeds/How often to pass an NG tube when the child pulled it out/Having food for pleasure | 7 | 7 | – | – | |
| Unstable/Crisis | 1 | Hospital admission for TPN | 1 | 1 | – | – | |
| Crisis | 1 | Choosing between PEG and TPN | 1 | 1 | – | – | |
| End of life | 1 | Not to feed the child through TPN but let him deteriorate | 1 | 1 | – | – | |
| Not specified | 2 | Choosing between PEG and NG tube/Going back on TPN when NG feeds did not work out | 2 | 2 | 1 (ill child) | – | |
| Subtotal decisions regarding nutrition | 17 | 14 | 17 | 1 | – | ||
| Other options for care and treatment | |||||||
| Diagnosis/unstable | 1 | Using a temporary rather than a permanent shunt | 1 | 1 | 1 (extended family member) | – | |
| Unstable | 9 | Whether to treat a chest infection (2)/Whether to treat seizures/Making a care plan including a protocol for pain management/Making a care plan not to prolong the child's life unnecessarily/Limiting most interventions/Having all treatment available/Not to do a bone marrow transplant/Not to do a kidney transplant | 9 | 9 | 1 (well sibling) | – | |
| Crisis | 1 | Whether to keep the child alive long enough for the family to say goodbye (due to family circumstances) | 1 | 1 | – | – | |
| End of life | 3 | Whether to use antibiotics/Whether to continue certain treatments in the last week of life/Whether to continue long‐term medication so the child would not wake up at the end of life | 3 | 3 | – | – | |
| Subtotal decisions regarding other options for care and treatment | 14 | 14 | 14 | 2 | – | ||
| Total decisions regarding limitation of treatment | 45 | 41 | 44 | 4 | 1 | ||
| Total number of decisions | 83 | 73 | 76 | 8 | 7 | ||
HCP, healthcare professional; NS, not specified; SCP, social care professional; NG tube, nasogastric tube (a tube that provides access to the stomach via the nasal passage); TPN, total parenteral nutrition (intravenous nutrition); PEG, percutaneous endoscopic gastrostomy (an endoscopic medical procedure in which a feeding tube is placed through the abdominal wall and into the stomach).
a
Number of discussions/decisions in which these stakeholders were involved.
b
Bag‐valve‐mask ventilation is a basic airway management technique that allows for oxygenation and ventilation of patients while avoiding more aggressive endotracheal intubation.