Pediatric Palliative Transport in Critically Ill Children: A Single Center's Experience and Parents' Perspectives

Abstract

The transfer of critically ill children from intensive care units (ICUs) to their homes for palliation is seldom described. We report our 10-year pediatric palliative transport experience and conducted a survey to gain parents' perspectives of their child's transport experience. Over the study period, eight patients were transported from our pediatric ICU to their homes or hospice facilities. There were no intratransport adverse events. Parents who participated in the survey responded positively to the transport experience. The availability of a dedicated critical care transport service allowed for palliative transfers to be performed safely. Facilitating transport to allow withdrawal of life support at home is an acceptable option to families as part of holistic end-of-life care.

Introduction

Transporting critically ill children to tertiary centers capable of providing specialized intensive care is the mainstay of pediatric emergency transportation services worldwide. ¹ However, the reverse transfer of such critically ill patients from intensive care units (ICUs) to their homes for comfort and palliative care, termed palliative transport, is seldom described in medical literature and confined to a few case reports and case series. ^{2 3 4 5 6 7 8 9}

Our Children's Hospital Emergency Transport Service (CHETS) is a dedicated neonatal and pediatric critical care transport service established in 2004 and performs on average 90 missions annually, the majority of which comprises the retrieval of critically ill children from emergency departments or private hospitals locally and in the region. ¹⁰ The CHETS team routinely comprises of an ICU trained physician and nurse, with a dedicated pediatric mobile ICU for road retrievals and is also equipped to travel by air ambulance when necessary. The children's ICU at KK Women's and Children's Hospital (KKH) is one of two tertiary government hospital pediatric ICUs in Singapore, where the country's sickest children are managed.

Despite improvements in pediatric mortality worldwide, ¹¹ a large majority of hospitalized children, particularly in the developed world, die in pediatric ICUs. ^{12 13} This places pediatric intensivists at the center of discussions and decisions pertaining to palliation and end-of-life care. ¹⁴ Our pediatric intensivists offer families palliative transfers home as part of end-of-life discussions. In this report, we describe our initial 10-year pediatric palliative transport experience, detailing our process and challenges faced. We also included parents' perspectives on their children's palliative transport obtained from a survey conducted as part of our ongoing efforts to optimize end-of-life care in the pediatric ICU with the aim of better understanding the needs and expectations of parents whose children may be in a similar situation.

Materials and Methods

We performed a retrospective audit of case notes and CHETS transport records over a 10-year period from January 2004 to December 2013, following approval from our hospital's institutional review board. Background demographic information extracted included age, gender, and diagnosis. Details of the ICU stay prior to the palliative transport and a comprehensive description of the transfer event from transport logs were analyzed.

A survey to gain an understanding on parents' perspectives and feedback on the palliative transport experience of their child was conducted. The survey consisted of seven questions, with five possible responses: strongly agree, agree, neutral, disagree, and strongly disagree. In addition, there was also an open-ended question for parents to pen down their feedback or responses in free text. A letter explaining the study was sent to families that had undergone a palliative transport requesting participation in February 2014. Participation in this survey was completely voluntary and responses kept anonymous. A stamped, addressed return envelope was included with the letter sent to the families identified. All responses to the survey were received by the end of the study period in January 2015.

Results

A total of eight pediatric patients underwent a palliative transport from our pediatric ICU to their homes or hospice facilities. Six (75%) patients were transported home for withdrawal of life support and two (25%) to hospice facilities for continued palliation ( Table 1 ). Primary pathologies and diagnoses at the time of ICU admission included a mix of acute life-threatening events in five patients (62.5%) and complex chronic life limiting conditions in three (37.5%) patients. The children ranged in age from 11 days to 14 years, with the median age of patients being 5 (interquartile range [IQR]: 3–9) years. ICU length of stay (LOS) prior to the palliative transport ranged from 1 to 51 days, with the median LOS in ICU being 13.5 (IQR: 7.5–29.0) days. Six (75%) cases in our series (all who were transported home) involved cessation of ventilatory support and inotropic support was discontinued in three (37.5%) patients. All eight (100%) patients were on invasive modes of ventilatory support, and three (37.5%) patients required inotropic support via central lines.

Table 1. Pediatric palliative transport case series ( n  = 8) .

Patient	Diagnosis	Patient data	ICU LOS (days)	Invasive lines/devices	Transfer location	Palliative team involvement	Total transport time	Time transport team spent at home/hospice	Comments
1	Fulminant meningoencephalitis	5 y Chinese Female	51	Oral ETT NGT	Home	No	110 min	55 min	Profound neurologic injury Death certified by transport physician
2	Double outlet right ventricle with severe pulmonary stenosis, MOF	11 d Chinese Male	10	Oral ETT Femoral CVL NGT	Home	No	130 min	50 min	Desaturation requiring bag and mask ventilation during transport Death certified by transport physician
3	Influenza A (H1N1) fulminant necrotizing encephalitis	5 y Chinese Male	14	Oral ETT Arterial line Femoral CVL NGT Urinary catheter	Home	No	88 min	38 min	Profound neurologic injury Brain death certification done in ICU prior to transport
4	Severe HIE secondary to submersion injury	5 y Chinese Female	34	Nasal ETT NGT	Hospice	No	–	–	Profound neurologic injury Handed over to hospice physician
5	Relapsed primitive neuroectodermal tumor, sepsis with MOF	14 y Chinese Male	5	Oral ETT Arterial line Hickman line Urinary catheter	Home	Yes	275 min	210 min	Bleeding from Hickman line requiring pressure dressing and suture Death certified by transport physician CCF staff present to support family at home
6	Inoperable brainstem glioma	7 y Malay Female	1	Oral ETT Arterial line Intraosseous needle NGT	Home	Yes	90 min	40 min	Extubated by transport physician and handed over to palliative team
7	Viral encephalitis	11 y Chinese Male	24	Tracheostomy NGT Urinary catheter	Hospice	No	–	20 min	Profound neurologic injury Handed over to hospice physician
8	Spinal muscular atrophy type 1, cardiorespiratory arrest with HIE	1 y Chinese Female	13	Oral ETT NGT Urinary catheter	Home	Yes	–	–	Extubated by transport physician and handed over to palliative team

Abbreviations: CCF, Children's Cancer Foundation; CVL, central venous line; ETT, endotracheal tube; HIE, hypoxic ischemic encephalopathy; ICU, intensive care unit; LOS, length of stay; MOF, multiorgan failure; NGT, nasogastric tube.

Four (50%) patients in our series had profound neurologic injury as evidenced by clinical examination findings and neuroimaging consistent with this diagnosis, fulfilling criteria for medical futility. Of the six patients transported home, certification of death was done at home by the transport physician in three (50%) cases; one (16.7%) patient had formal brainstem death certification in hospital prior to the home transfer and in two (33.3%) patients where death was not expected to be imminent upon withdrawal of invasive support at home, the palliative team was present to provide continued support at the patient's home. The palliative team was actively involved in the care of three patients (37.5%) in our series.

All eight (100%) palliative transports were land transfers with ambulances. Total transport time was captured in five (62.5%) patients; the remaining three had incomplete data entered in transport logs precluding analysis. The median total time for transport was 110 (IQR: 90–130) minutes. Median time spent at home or hospice facility by the transport team was 45 (IQR: 29–132.5) minutes. Time from extubation to death was recorded in three patients in our series, with the median time being 15 (IQR: 14–17) minutes.

Mild but continuous bleeding was noted from a Hickman line site following death certification at home in one case, requiring the application of a suture. Transient desaturations requiring bag and mask ventilation and suctioning were required briefly in another patient during transport. No other significant intratransfer adverse events were noted.

Survey on Parents' Perspectives

Five of the 8 (63%) families contacted agreed to participate in the survey. Three parents declined participation. One family that initially agreed to participate did not reply before the end of the study period, citing it was too painful to talk about their memories around their child's death when contacted. The four respondents were from diverse cultural and religious backgrounds, representative of Singapore's multicultural demographics; parents who responded were an equal mix of male (2) and female (2). Three parents had experienced a palliative transport to their home and 1 to a hospice facility. Parents who responded had experienced death of a child 3 to 5 years before the survey was returned. The survey results, verbatim comments, and feedback obtained from respondents are summarized in Tables 2 and 3 .

Table 2. Survey questions and responses ( n  = 4) .

Survey Questions	Strongly agree	Agree	Neutral	Disagree	Strongly disagree
1. I was glad to be offered the option of transferring my child home/to a hospice from the intensive care unit.	1	3	0	0	0
2. The death of my child at home/hospice was preferred to dying in the intensive care unit.	2	1	1	0	0
3. Having my child die at home/hospice was comfortable and acceptable to me/my family members.	3	1	0	0	0
4. I felt adequately supported during the palliative transfer process.	0	3	1	0	0
5. I do not regret the decision to proceed with the palliative transfer.	2	1	1	0	0
6. The palliative transport of my loved one, provided by the CHETS team was valuable to me/my family.	0	3	1	0	0
7. I feel that other families in similar situations may benefit from being given the option of a palliative transfer.	2	2	0	0	0

Abbreviation: CHETS, Children's Hospital Emergency Transport Service.

Table 3. Verbatim comments and feedback obtained from respondents about the palliative transfer.

Parent	Comments and feedback
1	“(The palliative transport) allowed family members to spend a little more time with their loved one.”
2	“The support provided by the palliative transfer team was good; I believe there is room for improvement prior to the transfer in ensuring palliative care staff at home or hospice are well trained in assisting with medical equipment and train the caretaker accordingly.... Lastly I would like to thank KKH for providing the support to our family especially during the transfer.”
3	“Because in hospital, especially in the ICU, it is inconvenient for close relatives to pay their last respects to the patient….. So far, they (transport team) have been very cooperative and helpful”
4	“I felt my child was back home.”

Discussion

Our case series of eight palliative transports demonstrated a high utilization of ICU technology in these critically ill children at the end of life following both acute life-threatening illnesses and as a consequence of deterioration of a life limiting chronic conditions. The presence and availability of a dedicated critical care transport service allowed for palliative transfers in these complex and critically ill children to be performed safely. Parents who responded to the survey felt that palliative transport was an acceptable and valuable option and were in favor of the provision of choice in an alternate location of death apart from the ICU.

Despite improvements in pediatric mortality and access to tertiary intensive care facilities worldwide, there remains a subset of patients treated in the ICU in whom quality of life is severely impaired or medical futility is reached. Local and international studies validate the finding that the proportion of hospitalized children dying in the ICU is increasing, ^{12 15 16} with withdrawal of life sustaining technologies being the predominant end-of-life scenario in the developed world. ^{17 18 19} Critical care providers therefore increasingly need to shift their goals of care to maximize comfort and alleviate suffering. Given access to palliative care may vary significantly in different healthcare settings, intensivists must be adept in the principles and practice of palliative care, underscoring the push to better integrate palliative care in the ICU. ^{20 21}

The core principles in pediatric palliative care are to minimize suffering and improve quality of life in the face of terminal illness by integrating medical, psychosocial, and spiritual care. ²² In addition, there is a strong focus on family-centered care, shared decision making, and the use of community-based resources. ^{23 24} The provision of choice in place of care and death of children is increasingly advocated in both adult and pediatric palliative care, ^{25 26 27} with studies of parents' perspectives in pediatric oncological patients reporting home as the preferred place for end-of-life care. ^{28 29} Retaining the ability to care and provide for their child at the end of life can be challenging in the aggressive ICU environment. ^{30 31} Palliative transfers allow families to be with their dying child in a private and familiar environment, where spiritual and cultural needs may be better addressed, with the potential to improve the quality of death for children and families. ^{7 8 32} Providing the option of palliative transfer empowers the family with choices regarding their child's care, one of the tenets of palliative care, and provides parents some degree of control at a moment of extremely vulnerability, which may facilitate the grieving process. ^{25 33}

Current pediatric literature reports favorable critical care provider and familial viewpoints ^{7 32} on palliative transports. We found similar feedback in our study. To the best of our knowledge, our study is the first report coming out from an Asian context and one of two reports of parents' perspectives after palliative transport worldwide. ⁷ Without a doubt, because it is extremely painful and difficult to talk about the death of a loved one, the literature on parents' perspectives on palliative transport is unsurprisingly scarce. Indeed, only 50% of parents involved finally finished our survey and provided their responses. Our survey, albeit involving a very small number of parents, showed that the palliative transport experience of their child was both acceptable and valuable to them and provided valuable feedback on how to improve our processes. All who responded felt there was a benefit in being given the option to choose a preferred place of death.

Other potential advantages of palliative transport include cost reduction from a prolonged ICU stay and the availability of life support technologies for other children who may benefit from aggressive medical interventions, though the cost of transport and a day of intensive care may vary in different healthcare settings and remains to be validated. In our case series, financial consideration was not the motivation for any of the transports, with the main goal being improving the quality of end-of-life care in the ICU. In addition, we must acknowledge that the experience of a child's death at home is a highly complex and varied experience, ^{27 34} influenced largely by cultural and societal factors. Thus, palliative home transfers may not be a suitable option for all.

Our Process

The first palliative transport we embarked on in 2004 followed an end-of-life conversation with parents who actively voiced fears around their child dying in the hospital rather than at home. ³⁵ Since then, we have developed a comprehensive process to facilitate palliative transports where feasible. This usually begins with a series of end-of-life conversations initiated by ICU staff and is followed with collaborative multidisciplinary input including the relevant subspecialists involved, palliative care specialists, medical social workers, nurses and allied health staff.

Adequate planning pretransport and considerations for the logistics required includes the availability of a transport team with trained personnel, equipment, and medication. Having a CHETS team enabled us to provide the necessary personnel and assemble the equipment required in a short time frame. Indeed, one patient in our series underwent a palliative transport within the same day of ICU admission when it was clear that medical interventions would be futile given progression of an inoperable brain tumor. Following a conversation with the oncologist and ICU team, the parents opted for comfort care and terminal extubation at home, which were organized rapidly with assistance from the palliative team.

In developing our process, it was also necessary for us to ensure that facilitating a palliative transfer did not reduce our ability to respond to an acute retrieval. Singapore's small geographical area and excellent transport infrastructure enable land transfers to occur with low risks. Given our high population density with a majority of the population living in government subsidized high-rise buildings, it is noteworthy that five of the six transfers to residential homes were to high-rise residential flats and occurred with no additional risk or safety issues arising. Patients are usually subsidized by the state or have insurance coverage that makes transfers affordable.

Other parallel planning includes contingency plans to manage anticipated symptoms after extubation and comfort care, in conjunction with the palliative care team. Withdrawing nonessential therapies and medications that do not increase risk of immediate death is done in the ICU just prior to the planned transport, following documentation of the do not resuscitate order. Medicolegal aspects including death certification and detailed documentation must also occur concurrently. The anticipated support at home following removal of life sustaining technologies where death is not expected to be imminent is usually managed in consultation with the pediatric palliative care team in KKH, who takes over care at home and aids in the provision of adequate bereavement support following death.

The importance and benefit of an early referral to the palliative care services cannot be stressed enough. ³⁶ Families of children with chronic illnesses and oncologic diseases may be better prepared for end-of-life issues, as highlighted by the lowest ICU LOS prior to palliative transfer in the two oncology patients in our series. In Singapore, we are fortunate that this bridge to provide community-based palliative care is offered by Star PALS (Pediatric Advanced Life Support). Established in 2012, it is Singapore's first specialist home-based palliative care service that supports children with life limiting illnesses. ²³ In other healthcare settings, other community-based resources and support may involve a community nurse or local pediatrician. Following the palliative transport, we aim to conduct a short debrief for staff reflection and feedback, as these events can be emotionally draining.

Our experience showed that palliative transports were feasible and could be performed in a safe manner. Even when the option was not taken up, empowering the family with choices and control over their child's care evoked a positive response from the family that fostered a better working relationship with the medical team. Over time, fine tuning this process has led to more protocolized and smooth palliative transfers in our department.

Challenges

Challenges exist before, during and after the transport of these critically ill children. ^{6 8 37} Transporting ICU patients, with their medical complexity and need for life sustaining technologies at the end of life, can be technically challenging. There may also be instances when a palliative transfer may be deemed unsuitable (e.g., where there is a high risk of death en route or a patient's clinical state is so precarious that time to prepare for such a transfer is limited). Collaborative meetings with multidisciplinary teams while ideal can be limited by the time-sensitive nature of coordinating these transports. It is certainly resource intensive from an organizational perspective, with the need to coordinate care within an interdisciplinary team, paying attention to infrastructure, personnel, and equipment. ^{8 37} Resource allocation within different healthcare services will need to be tailored in an individualized way. Finally, despite best intentions and detailed planning, unexpected events may occur.

Diverse family situations require individualized responses from the medical and nursing team. Frank and open conversations in preparing the family are, thus, essential. Plans must be made to sensitively reflect continued care following prolonged hospitalizations, as families can feel overwhelmed being at home before withdrawal of care. The involvement of palliative care early in the clinical course has the potential to offer choice around place of care and death for these children and families. ^{19 36 38} However, despite statements that urge early referral to palliative services in life threatening illnesses, we note this is often done late in the clinical trajectory or not at all ¹⁶ as is reflected by the low proportion of patients in our series who had palliative care involvement. Since then, with increased awareness and better collaboration, we as a unit strive to involve the palliative team much earlier.

Limitations

We note several limitations to this study, including the small patient numbers and purely descriptive and retrospective design of the study, heavily dependent on available medical documentation. The survey conducted occurred several years after their child's death and may thus be affected by recall bias and subsequent bereavement experiences. We were not able to study potential differences in nonresponder experience based on the survey or available medical documentation. We note that two (50%) of the nonresponders had experienced a palliative transport more than 7 years before the survey was undertaken, compared with respondents who had all experienced the death of their child less than 5 years before the survey. We recognize that deep emotional experiences can be difficult to revisit after long lapses of time, and that it is possible parents who felt unable to participate may have had views or experiences that were different from those who responded. Only parents were contacted for this survey; the viewpoints of siblings and extended family members were not explicitly sought and may vary. It is also acknowledged that the healthcare system, infrastructure, and sociocultural context within which the study was conducted may limit the generalizability of our findings and ability to carry out palliative transports.

Future Direction

There remains much work to be done in pediatric end-of-life care, particularly a deeper understanding of end-of-life issues in the pediatric ICU is needed, both locally and internationally. The presence of unit-based critical care transport teams such as CHETS in our context provides a base for further detailed analysis of the pediatric palliative transport system in Singapore, particularly with regard to evaluating resource utilization, cost-effectiveness, impact on the unit/hospital, and family bereavement outcomes, following studies which suggest improved palliative care in the ICU is potentially resource-saving and beneficial to the family. ^{39 40 41}

Understanding a unit's unique attributes and needs is vital in improving palliative care access in the ICU. In our series, the low rate of palliative involvement provides us with the impetus to study and understand the barriers to palliative care in the ICU better. Further opportunities for studies and quality improvement initiatives include formalized staff training in the principles and practice of palliative care, opportunities for nurses to assist with decision making, increased and more meaningful family participation in a child's care at the end of life, even when a palliative transport is not possible. More prospective studies examining family and healthcare providers' views on end-of-life decisions in the ICU are urgently needed to better inform and address this important issue within the pediatric ICU.

Conclusion

Though a relatively new and infrequent practice worldwide, ³⁷ pediatric palliative transport is gaining greater awareness and momentum in pediatric ICUs around the world. To our best knowledge, this is the first reported case series of pediatric palliative transport in Asia and adds to the growing experience with pediatric palliative transport worldwide with the added value of providing insight into parents' perspectives, challenging as this may be to obtain. The availability of a dedicated critical care transport service with expertise in managing children with life sustaining therapies allows the option of palliative transfers to be offered to families and can be supported in a way that is safe and promotes comfort. We have shown that palliative transports are a unique but important contribution to end-of-life care. Successful palliative transfers require robust, quality assured critical care transport processes to be in place. Though challenging and resource intensive, we propose that facilitating transport to allow withdrawal of life support at home is an acceptable and valuable option to families as part of holistic end-of-life care in the ICU and supports the need to formalize and develop local guidelines for end-of-life critical care transports.