Journey from Pediatric Intensive Care to Palliative Care

Abstract

Background:

Approximately two-thirds of patients who die in the pediatric intensive care unit (PICU) do so following withdrawal of intensive care treatment. Most often when intensive care treatment is withdrawn, the child remains in the PICU for end-of-life care.

Objectives:

This study aimed to examine the process of referral over a 6-year period of children from a PICU to children's hospices for end-of-life care.

Methods:

This study carried out a retrospective review of all children referred from a large tertiary-level United Kingdom PICU to children's hospices over a 6-year period. Information was collected both from the PICU and from the hospices involved.

Results:

A total of 12 children were transferred over the 6-year period. Discussions about limitation of treatment occurred after an average of 9 days of ventilation, with time from initial referral to transfer taking an additional 4 days such that the mean stay on the PICU prior to transfer was 13 days. Two-thirds of families had prior contact with the palliative care team involved. One-third of the patients were transported to the hospice while still dependent on mechanical invasive ventilatory support. All children were extubated by a PICU consultant within 90 minutes of arrival at the hospice. Overall, eight children died soon after transfer, with four children surviving beyond 2 weeks after transfer.

Conclusion:

This study suggests that there is a feasible alternative location for withdrawal of intensive care and/or compassionate extubation. The study found that one-third of children transferred to hospice for end-of-life care survived the initial withdrawal of intensive therapy; hence, parallel planning should be discussed prior to transfer to hospice. Information gained from this study has contributed toward the creation of a national care pathway to support extubation within a children's palliative care framework.

Introduction

Approximately two-thirds of all pediatric intensive care unit (PICU) deaths follow the withdrawal or withholding of life-supporting treatment.^1,2 A role for palliative care specialist support is emerging in the end-of-life care of PICU patients and, in particular, in care outside the critical care environment.⁴ Despite an increasing understanding of the role of palliative care services for children, studies^2,5 suggest that many children with life-limiting chronic illnesses still die in a hospital after prolonged periods of inpatient admission and mechanical ventilation. Furthermore, a greater proportion of hospitalized children are dying in a pediatric intensive care environment.^2,5 Some of these children are now being given the choice to die at home, in a hospice, or at a hospital closer to home, where the withdrawal of mechanical ventilation/or “compassionate extubation” is part of their end-of-life care plan.^6,7 Compassionate extubation comprises not only the elective withdrawal of mechanical ventilation but also encompasses an approach to making the process as symptom-free and well-supported as possible for patients and their families. This process has traditionally taken place in intensive care environments, but in recent years there has been an increasing trend to support and enable the process to occur outside of the acute hospital, in settings such as the family home or a children's hospice.^6,8,9

For some children, ongoing survival following withdrawal of life-sustaining treatment is possible, but difficult to predict. The possibility of survival should be discussed with the family and parallel planning should be a part of end-of-life care. Parallel planning refers to planning the provision of end-of-life care, while also continuing to plan for the utilization of the full range of local children's services should the child survive for a prolonged period.^3,10 The Royal College of Paediatrics and Child Health (RCPCH) provided guidance on the withholding and withdrawing of life-saving care in 2004,¹¹ but there was a lack of published evidence and experience on the subject of compassionate extubation outside the intensive care setting. In this study, we aim to examine the process of delivering end-of-life care to children with life-limiting illness or injury who are dependent on mechanical invasive ventilatory support outside the acute hospital setting.

Methods

We performed a retrospective review of case notes for all children aged 0 to 18 years referred from a large tertiary-level PICU in Oxford in the United Kingdom to children's hospices over a 6-year period between January 1, 2005 and December 31, 2010. Information was collected both from the PICU at the John Radcliffe Hospital, Oxford and from the two hospices to which all children in this group were referred, namely Helen House and Keech Cottage. Patient identification and yearly mortality were obtained from the PICU database and individual patient data were collected from case notes. This consisted of age at admission, underlying health problems, length of stay, and referral information from the PICU to the hospices. Medication prescribed, including alterations made in the 24 hours prior to death, and treatments received at time of death were also noted. Simple descriptive statistical analysis was performed. The study was conducted in accordance with the National Health Service (NHS) Trust local audit and governance policy.

Results

During the study period there were 116 deaths reported in patients admitted to the PICU and a total of 12 children were transferred from the PICU to a hospice for palliative care. The trend of referral to hospice from PICU is as shown in Figure 1.

FIG. 1.

Number of referrals.

The patients were referred to a hospice by a consultant in pediatric intensive care in the majority of cases, but in two cases the family contacted the hospice directly to self-refer. Half of all those referred had been admitted with a lower respiratory tract infection on a background of chronic disease. The other children either had an inoperable brain tumor or had sustained a severe hypoxic brain injury as a result of trauma or drowning (Table 1).

Table 1.

Referred Cases

Child	Age (years)	Primary diagnosis at admission	Underlying condition
1	0.5	Sepsis with lower respiratory tract infection	Ventricular septal defect
2	4	Lower respiratory tract infection	Global developmental delay, seizures
3	9	Lower respiratory tract Infection	Rett's syndrome
4	6	Anaplastic astrocytoma, relapse	Anaplastic astrocytoma, relapse
5	2	Road traffic accident with lung contusion and subarachnoid bleeding	None
6	3	Status epilepticus	Cerebral palsy, hydrocephalous with V-P shunt
7	3	Brain tumor, glioblastoma multiforme	None
8	3	Sepsis secondary to LRTI	Niemann-Pick disease
9	13	Traumatic brain Injury, spinal injury	None
10	2.5	Near-drowning with severe hypoxic brain injury	None
11	6	Lower respiratory tract infection	Neuromyopathy, developmental delay
12	3	Lower respiratory tract infection, sepsis	Spastic quadriplegia, HIE grade II

HIE, hypoxic ischemic encephalopathy; LRTI, lower respiratory tract infection; VP shunt, ventriculoperitoneal shunt.

The median age of all children who died in the PICU during this period was 2 years (95% confidence interval [CI], 3.3-5.4). The median age of the children who were referred to hospices for withdrawal of care was 3 years (95% CI, 2.4-6.8).

The mean length of stay in the PICU prior to transfer to a hospice was 13 days. Discussions about limitation of treatment occurred after an average of 9 days of PICU treatment following admission for intensive care. The average time from initial hospice referral to transfer was 4 days. Two-thirds of families had had prior contact with the palliative care team involved. At the time of referral, half of the patients were still supported on invasive ventilation and of these, one was on inotropic support. At the time of transfer, two had been extubated, leaving one-third of patients still on invasive ventilation at the time of transfer, all of whom were transferred to the hospice by ambulance with a PICU consultant in attendance. All these children were extubated by the PICU consultant within 90 minutes of arrival at the hospice. One child was transferred on noninvasive ventilation with a view to discontinuing this at the hospice; the family changed its decision on arrival and the child remained on noninvasive support.

Nonessential medication was discontinued prior to leaving the PICU in all cases, and essential medication was converted where possible to an oral or subcutaneous route. Importantly, pain management was addressed at the time of transfer in all children. However, the need for ongoing medication for symptom control including management of seizures, sedation, and persistent pain was anticipated in only five cases (42%). In those cases, medication was supplied for up to a week only. In half of all cases the hospice had to arrange prescription and supply of medication after admission of the child.

At the time of admission, a “do not attempt cardiopulmonary resuscitation (DNACPR)” order was documented in nine cases, and two children did not have a documented DNACPR order. One child died before transfer to the hospice. A discharge summary was present at the time of transfer for all but one patient. Only three children had clear evidence of parallel planning in place at the time of transfer to hospice, all of whom had had a prearranged care plan from a hospice prior to admission to the PICU.

Overall, two-thirds of children died soon after transfer, but four survived for 2 weeks or longer (range 14–412 days). There was no clear predictor with respect to age or diagnosis among those who survived. After death, three cases were referred to the coroner, but none of the children underwent a post mortem. There was no documentation of discussion regarding organ donation in any of the cases.

Discussion

Over the 6-year study period, the continued referrals from the intensive care setting to a palliative care facility suggest that numerous families wish for end-of-life care to be provided outside of an acute hospital setting, when choices are offered. This was further highlighted by the fact that two families in our cohort self-referred to a hospice that was known to them.

More than half of our patients who were transferred to a hospice had an underlying chronic condition and were already known to a palliative care team. Several studies have shown that children who die after an active decision to withdraw or limit treatment are more likely to have had a chronic disease.^12,13 The families of children with chronic conditions may have had more time to reflect and accept the inevitability of their child's death and to make preemptive decisions regarding end-of-life care. The IMPaCCT document from the European Association of Palliative Care¹⁴ defines standards for pediatric palliative care in Europe. In the core standards it states that “palliative care must be provided wherever the child and family choose to be, e.g., home, hospital or hospice.” Furthermore, it states that “the family home shall remain the centre of caring wherever possible.” It is increasingly recognized that in the pediatric intensive care environment the aim should be to offer all families a choice as to the setting of end-of-life care when a decision has been made to withdraw intensive care. In addition, patients who have not previously accessed palliative care services but who have catastrophic consequences from a more acute condition could be considered for out-of-hospital end-of-life care.

It is noteworthy that although pediatric deaths often followed acute exacerbations of chronic diseases, irrespective of disease states the discussions about limitation of treatment occurred after an average of 9 days in the PICU, with a further period required before the actual transfer. This represents a longer time to withdrawal and withholding of life-sustaining treatment than previously reported.^15–18 Due to the retrospective nature of this study and the dependence on documentation, it is difficult to ascertain why discussions appeared to have occurred relatively later in this group. This may be partly explained by the initial presentation and the evolution of the acute injury or illness, which may determine the point at which it becomes clear that ongoing therapy is futile or likely to be prolonged and painful.

It is likely that sufficient time is required to give parents and families the time to reach a fully informed decision to withdraw life-sustaining treatment. In no case was a delay imposed by the hospice in terms of availability of the facility or willingness to accommodate the child. Further studies should aim to understand more about how and when discussions around withdrawal or withholding of life-supporting treatment occur, to identify any potential barriers to communication and to what extent opportunities exist for discussions to be initiated earlier in the illness course.

No children in our study were transferred to their home for planned withdrawal of intensive therapy. This may reflect a lack of awareness on the part of the acute medical team or there may be local barriers to supporting treatment withdrawal in the community, particularly when possible survival is taken into account.

In our study one-third of patients were still on invasive ventilation at the time of transfer and were extubated in the hospice. As noted in previous studies,^5,7 this highlights the feasibility of compassionate extubation outside traditional intensive care settings and indicates that with proper planning the transfer of children for end-of-life care while still ventilated is a viable option for children and families in this situation.

It is noteworthy that one-third of the children transferred from an intensive care setting to a hospice for end-of-life care survived beyond 2 weeks and required ongoing care. This is in keeping with recent findings from other studies¹ in the United Kingdom. Relatively short survival times, ranging on average from 15 minutes to 3 hours, have been reported in some other studies.^19,20 This highlights the unpredictability of events following withdrawal of life-sustaining treatment, as well as the need to discuss and agree on a robust plan in case of survival, which includes preparation of the families for this possibility.

Pain management was addressed consistently at the time of discharge, but provision for ongoing symptom control medication was made in only 42% of cases. Supply of medication in hospice settings may be less straightforward and thus requires careful planning and discussion before transfer. In every case, parents need to be made aware during the initial discussions that there is a possibility of ongoing survival, in which circumstance the hospice would to quickly reestablish links as appropriate with the general practitioner, hospital team, and other allied health care professionals in order to plan ongoing care collaboratively.

This study is limited because of its retrospective design, small patient number, and its dependence on documentation in medical records. As such it is purely descriptive and does not address all of the factors that would influence decisions about whether or not to refer children to a palliative care service. Nevertheless, we have demonstrated that it is possible for children meeting the criteria outlined in the RCPCH guidelines¹¹ with either severe acute injury or illness, with or without chronic underlying life-limiting conditions, to be offered an alternative to withdrawal of intensive therapy in a hospital.

Conclusion

Transfer out of the PICU of critically ill children who may be approaching the end of their lives while still dependent on invasive ventilation and other life-sustaining therapies is a viable option. Immediate death should not be assumed, and parallel planning should be provided for the possible longer-term ongoing needs of each patient. Insights gained from reviewing these cases contributed to the setting up of a working party to produce a national care pathway to support extubation within a children's palliative care framework, which was published in 2011.³

Footnotes

Acknowledgments

We acknowledge the dedicated and humane care provided by all the staff of the PICU at the Oxford University Hospital and both hospices and thank them for their record keeping. We also acknowledge the children who died at the Oxford University Hospital and in both hospices, and their families, and hope that this study will contribute to improving end-of-life care in the future.

Author Disclosure Statement

No competing financial interests exist.

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