The majority of pediatric deaths occur in the hospital setting, and most of these occur in the intensive care setting. There are however growing reports of end-of-life care for children admitted to ICUs being successfully provided outside the critical care setting by ICU teams in collaboration with palliative care teams, community pediatric teams, and/or home hospice teams.
Palliative care encompasses a combination of medical, psychosocial, and spiritual care that enables children with serious, life-threatening illnesses to maximize quality of life while making medical decisions based on the goals and values of the patient and family. For patients in a PICU, these complex decisions may involve consideration of alternative sites for care at the end of life. Potential locations include the patient’s home, an inpatient unit of the current hospital, a better-situated community hospital, or a freestanding hospice facility.
Given the increased medical complexity of patients treated in an ICU and the accompanying medical technology required, discharging patients to alternative settings has not always been considered a possibility. Indeed, there are many challenges to consider including providing optimal support for patients and families, control of distressing symptoms prior to transport, during transport and after “discharge,” and logistical issues such as cost, transport, and provision of equipment and medications. Some situations may preclude transport, and resources, procedures, and policies will vary. Despite these challenges, provision of end-of-life care either at home or in a facility closer to home has the potential to improve the quality of death for children and their families.
This article explores the possibilities and logistical considerations for “compassionate ICU discharge” where the most likely outcome following discharge is death.
THE RATIONALE FOR CONSIDERING COMPASSIONATE ICU DISCHARGE
A recent review of the literature suggested that the majority of parents of children with life-limiting and life-threatening conditions would prefer death to occur at home—if possible (1). For some families, taking their child home is very important (2, 3). Their child may have never been home to the space that was lovingly prepared for them, and parents may have the surreal feeling that they never really had a child or that their family was not complete (4). Home may be seen as a place of comfort or normality … a place where the parents can care for their child on their own terms and in their own way (2, 3). Parents may feel that they can better attend to siblings and control the nature and number of visitors (4).
Many parents find the PICU environment noisy. They are surrounded by technology, frequently interrupted by staff, and have little control (4). They may struggle to even cuddle their child or change a nappy/diaper. It can be difficult to create the private, intimate space they hope to have for their child’s last few hours or days (5). Conversely, the presence of skilled staff, monitors, and tests that help interpret changes in their child’s condition can be reassuring.
THE FEASIBILITY OF COMPASSIONATE ICU DISCHARGE
Discharge directly from a PICU to care outside a hospital setting at end of life is infrequent (6–8) but has successfully been performed at a number of centers with care, consideration, and preparation (3, 5, 9–14). There are many facets to consider when contemplating whether a transfer is medically feasible or advisable for patients and families. First, the availability of infrastructure to support personnel and other resources necessary for transfer needs to be present. Ideally, this infrastructure would include an interdisciplinary team of physicians, nurses, psychosocial support workers, a pharmacist, and care coordinator. Having such a team ensures that all aspects of care are being addressed, including supporting the family through the decision-making and transfer process. From an organizational point of view, transporting an intubated child for extubation at home or in an outside hospice or hospital is resource intensive and may not be an option in some centers. ICU-trained personnel are generally required to perform the transfer and often the extubation and immediate postextubation care. It is very important that transfer is not offered as a potential option to families unless it is a realistic possibility.
The available literature suggests that programs that have reported successful compassionate discharges have a number of features in common. First, there is support for PICU personnel to be actively involved in planning and transport. In the most recent reported experiences, all centers reported the use of PICU staff for the actual transport and extubation (4, 15, 16). This presents a significant limitation for programs with limited personnel and equipment. Second, the need for ongoing home-based care post extubation was addressed by using community nursing services, home hospice, or local pediatricians.
It is important to recognize that although there have been a number of published case reports, and single institution experiences, there are no prospective or larger scale studies. Among the limited literature, Laddie et al (16) described 18 patients over their 10-year experience of planned out-of-hospital withdrawal of life-sustaining therapies. The time from withdrawal until death ranged from immediate to 5 days. No unanticipated complications or unanticipated symptoms were reported. In our experience, there can sometimes be unintended negative outcomes of extubation outside the PICU including lack of proper medications for effective symptom management, lack of adequate home nursing support for complicated patients or patients who survive longer than expected, and families being overwhelmed with visitors and household tasks.
The feasibility of compassionate ICU discharge is frequently determined by the phase of illness when end-of-life options are considered. In our experience, conversations often happen too late in the patient’s course to make compassionate discharge medically feasible. Patients who have escalating symptom management needs and those with high ventilator needs where there is a high risk of death during transport are generally not considered candidates for transfer. Earlier consideration of end-of-life options may occur as part of timely advance care planning discussions. ICU teams less familiar with the process may involve a palliative care team in these conversations to help outline options of care outside the PICU, to describe and explore practical considerations with the family and assist the PICU team with linkages to ward teams and community-based resources for ongoing care.
The process begins with a series of conversations with the patient and/or family about goals and expectations. For those who express a desire for end-of-life care at home, it is vitally important to explore their hopes and fears around home care. This may not be achievable in a single conversation and ideally comes after a series of conversations that have occurred throughout the child’s illness. Early involvement of a palliative care team can aid in this process, as they have experience providing care outside of the PICU and are used to discussing location of death with families. For families that wish to explore transition from the ICU, the required actions and processes need consideration when assessing feasibility (3, 16, 17) (Fig. 1).
Assessment involves exploring the availability of medical and transport personnel, equipment, and medications for use in the PICU prior to transport, during transport, and at the desired location of care. It is critical that there is a plan for sufficient resources to be available at all locations. Staffing for transport and immediate posttransfer care can be a significant drain on the resources of a PICU, and it may not always be possible to provide this sort of care. In addition, some families live in areas or situations where the resources in their desired location are simply inadequate.
COMPASSIONATE DISCHARGE PLANNING
When patients are transferred from an ICU for end-of-life care, it generally involves discontinuation of intensive medical therapies such as ventilatory support, other mechanical assistive technologies, and IV medications. In the case described later in this article, several therapies were withdrawn prior to transfer to simplify transport. It was the judgement of treating staff that withdrawal of these therapies would not increase the immediate risk of death.
Transporting a very sick child home for extubation has many potential benefits, but can also present many challenges. This underscores the importance of advance preparation to support informed choices and realistic expectations.
Logistical considerations include arranging and coordinating appropriate staff and transport in a short time frame (3, 5, 9). Typically, the child would be accompanied by an intensive care physician and intensive care nurse and then be met at home by palliative care or hospice staff. Intensive care staff have the expertise and skills required to transport and extubate the patient safely, but they can generally not stay long in the home. Palliative care and hospice staff have the skills and resources to continue the care of the child and family in the hours or days that follow extubation. This does mean, however, that the family must meet and work with a new team. Ideally, the family would have met the hospice or palliative care teams prior to hospital discharge, but because of the distance some families live from the hospital, this is not always possible.
It is important to discuss the range of possible scenarios that may follow extubation. The course of a very sick child can be difficult to predict with absolute certainty as any experienced intensivist or palliative care physician can attest. Children who are thought to be “totally dependent” on ventilation can survive for hours or even days following extubation (16, 18). It is important to have plans in place for multiple possible outcomes including a rapid deterioration over minutes and a longer deterioration over days. In some cases, medium to long-term survival is possible (16).
One of the most difficult aspects of transition to home occurs when the ICU or transport team leaves the home. A palliative care team may be available at the home for a period of a few hours to settle the family in but ultimately, the parents are left to care for the child. This includes providing medications to relieve symptoms without the immediate support of medical or nursing personnel. For families leaving an ICU setting, this can be a very difficult adjustment. Symptoms often encountered include respiratory distress, pain, agitation, and/or seizures. Medications may be provided enterally or subcutaneously by infusion or intermittent dosing. Palliative care teams have considerable experience in the subcutaneous administration of medications such as morphine and midazolam and can provide the necessary advice and equipment to the treating team and the family. Syringe drivers used to deliver continuous subcutaneous infusions generally need attention every 24 hours, so it is important to consider who will do this if the child survives longer than expected.
It is important to equip families with the skills and knowledge they need to care for their child at home. If necessary and where local policies permit, they can even be taught how to administer medications subcutaneously. Palliative care providers often have experience in educating parents and generally provide comprehensive written plans for them to follow. Parents may have access to telephone support from a physician or nurse on call, or home aides to help with caregiving tasks, but immediate medical assistance is unlikely to be available although well-resourced centers may be able to provide in-home nursing for periods of time.
Anticipating the symptoms that may arise, the medications required, and any equipment that may be necessary are crucial to effective planning (16). These all need to be gathered and transported with the patient and present in the home for postextubation care. Examples might include suction units, oxygen, and nasogastric feeds and pumps.
Medicolegal considerations include death certification, liaison with the Coroner if required, and clear documentation of goals of care and treatment limitations. Clarifying roles and responsibilities around all of these tasks is essential, and checklists can be very helpful (16).
A general flowchart outlining steps involved in the transitioning patients from the PICU for potential end-of-life care is shown in Figure 1. The case below is an example of how the process can be used.
Sam was born at 36 weeks gestation with Alagille Syndrome. He had a significant cardiac defect (Tetralogy of Fallot) and underwent major surgery which was complicated by a thoracic duct injury. A chylothorax resulted in the need for parenteral nutrition. This was later successfully repaired, and he was fed via a nasogastric tube. Sam also developed anuric renal failure as a result of an ischemic injury and underwent peritoneal dialysis. There was no improvement in his renal function, and it was felt that there was no prospect of recovery. He was too small to receive a renal transplant and for a range of technical reasons could not continue peritoneal dialysis or undergo hemodialysis.
The evolution of Sam’s course of illness was complicated, and at 2 months old, he remained dependent on ventilation. He was also found to have areas of severe hypoxic-ischemic injury on brain MRI. After discussing his clinical situation, his parents and treating team decided that the focus of care should be on his comfort. His family expressed a desire to take him home to die.
The Palliative Care team was asked to assist with planning for care at home. Although it was considered likely that Sam could die soon after extubation, it was possible that he could survive for a few days. The Intensive Care staff was able to transport him home and extubate him there but could not provide ongoing support due to resource constraints. The Palliative Care team was able to provide the necessary ongoing support including symptom management, care around the time of death, and bereavement support.
The parents explained that they had some important goals:
- To spend time together at home as a family,
- For Sam to be comfortable and unafraid,
- For Sam to have some “normal” experiences like hearing a bird and feeling the sun on his face.
On the morning of discharge, peritoneal dialysis was ceased, and the nasogastric tube was removed. Sam was transported home while intubated and ventilated with the support of an intensive care physician and nurse. He was extubated while being cuddled by his parents. The palliative care physician and nurse then arrived at the home and worked together with colleagues from intensive care to ensure he was comfortable. His parents were encouraged to offer whatever feeds they felt he could manage. A symptom management plan and appropriate medications were left with the family. A form documenting treatment goals and stating that resuscitation was not appropriate was left in the home. The parents were provided with information as to what to do when Sam died and a nurse remained on-call for them although the response time may have been an hour or two. All staff then left the family to have time together. The family sat outside in their garden. Sam heard a bird and felt the sun. He died peacefully later that night as the family lay together in bed. They called the palliative care nurse in the morning, and she visited to help them with the next steps. Some of these including funeral planning, had been preempted in the ICU. Sam’s mother commented to the health professionals involved that “all families of very sick children should have the chance to do this.”
In Sam’s case, the following factors facilitated effective transfer for end-of-life care at home (Table 1):
- the family expressed a strong desire to spend time together at home,
- the clinicians involved felt a strong sense of empathy for this and were open to being creative and flexible in an effort to achieve the family’s wish,
- there were skilled staff available and willing to assist,
- the necessary transport facilities were available,
- the Palliative Care team was able to respond quickly,
- the Palliative Care team and ICU care coordinator had an effective working relationship,
- the family lived close to the hospital.
SPECIAL CONSIDERATIONS FOR INPATIENT HOSPICE FACILITY TRANSFER
Hospice is a philosophy of care for those with terminal illness that provides a range of services including symptom control, skilled nursing care, complementary therapies, counseling, and spiritual support, all designed to focus on maximizing comfort and quality of life. The term is often used interchangeably with “palliative care.” Hospice care can be provided in a patient’s home, an inpatient hospice facility, long-term care facility, or sometimes a hospital (19). Most commonly, hospice care is provided in a patient’s home, where family members are the primary caretakers with interdisciplinary hospice support.
For some patients and families, discharge from a PICU directly to an inpatient hospice facility is possible, either for discontinuation of medical technology or to provide an interim step toward discharge home. Transferring patients from an ICU to an inpatient hospice facility can make certain aspects of transition less challenging due to the availability of medical personnel for longer than expected survival, hospice expertise with care coordination and symptom management, and psychosocial, spiritual, and bereavement support services. As with transfers to a home setting, clear communication and planning are necessary. Although a good option in some cases, the availability of pediatric inpatient hospice facilities worldwide is limited. In the United Kingdom, the availability of freestanding hospices is more prevalent as it is there that the modern pediatric hospice movement began in 1982 with the founding of Helen House. In Canada, there are six freestanding hospices that care for children, including Canuck Place Children’s Hospice, which opened in 1995 as North America’s first freestanding children’s hospice (20). In a recent review of their 15-year experience, Canuck Place reported 60.7% of their enrolled patients died in the hospice facility, while 16.4% died at home, and 21.7% in a hospital (20).
The importance of detailed, ongoing communication in the planning and execution of transitions of care cannot be overstated in children undergoing the process of compassionate ICU discharge. Communication begins with care providers discussing goals and expectations with patients and families. It continues with the multiple PICU care providers communicating with each other about aspects of care transition (Table 2) and then with detailed treatment plans which are shared both verbally and in writing to the care teams assuming care for the patient, whether that care team is in the home, in a hospice facility, or on another hospital floor.
For some families, PICU is the place where they feel their child should receive end-of-life care. For others, taking their child home or to a more home-like environment such as a hospice is important. If a transport can be feasibly conducted, and ongoing support resources are available, then high-quality, end-of-life care can be provided in settings outside the ICU. The deaths of these children in their chosen place of care, whether that is home, a freestanding hospice facility, ward, or a community-based hospital, can be supported in a way is safe and promotes their comfort. Compassionate discharge from PICU requires meticulous planning and close collaboration between intensive care staff, palliative care staff, and other community services. There are considerable logistical challenges to overcome, and it may not always be possible. But when it can be achieved, helping a child and family get home can be incredibly meaningful for them and for the staff involved.
1. Bluebond-Langner M, Beecham E, Candy B, et al. Preferred place of death for children and young people with life-limiting and life-threatening conditions: A systematic review of the literature and recommendations for future inquiry and policy. Palliat Med 2013; 27:705713
2. Price J, McCloskey S, Brazil K. The role of hospice
in the transition from hospital to home for technology-dependent children-A qualitative study. J Clin Nurs 2018; 27:396406
3. Needle JS. Home extubation by a pediatric critical care team: Providing a compassionate death outside the pediatric intensive care unit. Pediatr Crit Care Med 2010; 11:401403
4. Nelson H, Mott S, Kleinman ME, et al. Parents’ experiences of pediatric palliative transports: A qualitative case series. J Pain Symptom Manage 2015; 50:375380
5. C Simpson E, Penrose CV. Compassionate extubation in children at hospice
and home. Int J Palliat Nurs 2011; 17:164169
6. Carter BS, Howenstein M, Gilmer MJ, et al. Circumstances surrounding the deaths of hospitalized children: Opportunities for pediatric palliative care. Pediatrics 2004; 114:e361e366
7. Gupta N, Harrop E, Lapwood S, et al. Journey from pediatric intensive care to palliative care. J Palliat Med 2013; 16:397401
8. Aslakson RA, Curtis JR, Nelson JE. The changing role of palliative care in the ICU. Crit Care Med 2014; 42:24182428
9. Noje C, Bernier ML, Costabile PM, et al. Pediatric critical care transport as a conduit to terminal extubation at home: A case series. Pediatr Crit Care Med 2017; 18:e4e8
10. Fraser LK, Fleming T, Miller M, et al.; Paediatric Intensive Care Audit Network: Palliative care discharge from paediatric intensive care units in Great Britain. Palliat Med 2010; 24:608615
11. Fraser LK, Miller M, Draper ES, et al.; Paediatric Intensive Care Audit Network: Place of death and palliative care following discharge from paediatric intensive care units. Arch Dis Child 2011; 96:11951198
12. Chawla S, D’Agostino RL, Pastores SM, et al. Homeward bound: An analysis of patients discharged home from an oncologic intensive care unit. J Crit Care 2012; 27:681687
13. Fraser LK, Fleming S, Parslow R. Changing place of death in children who died after discharge from paediatric intensive care units: A national, data linkage study. Palliat Med 2018; 32:337346
14. Unger KM. Withdrawal of ventilatory support at home on hospice
. J Pain Symptom Manage 2016; 52:305312
15. Longden JV, Mayer AP. Family involvement in end-of-life care in a paediatric intensive care unit. Nurs Crit Care 2007; 12:181187
16. Laddie J, Craig F, Brierley J, et al. Withdrawal of ventilatory support outside the intensive care unit: Guidance for practice. Arch Dis Child 2014; 99:812816
17. Zwerdling T, Hamann KC, Kon AA. Home pediatric compassionate extubation: Bridging intensive and palliative care. Am J Hosp Palliat Care 2006; 23:224228
18. Burns JP, Mitchell C, Outwater KM, et al. End-of-life care in the pediatric intensive care unit after the forgoing of life-sustaining treatment. Crit Care Med 2000; 28:30603066
19. Hui D, De La Cruz M, Mori M, et al. Concepts and definitions for “supportive care,” “best supportive care,” “palliative care,” and “hospice
care” in the published literature, dictionaries, and textbooks. Support Care Cancer 2013; 21:659685
20. Siden H, Chavoshi N, Harvey B, et al. Characteristics of a pediatric hospice
palliative care program over 15 years. Pediatrics 2014; 134:e765e772