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Hospital or Home? Where Should Children Die and How Do We Make That a Reality?
Journal Pre-proof Hospital or Home? Where Should Children Die and How Do We Make that a Reality? Emily E. Johnston, MD, MS, Isaac Martinez, BA, Erin Currie, PhD, RN, Katharine E. Brock, MD, MS, Joanne Wolfe, MD, MPH PII:
S0885-3924(19)31084-X
DOI:
https://doi.org/10.1016/j.jpainsymman.2019.12.370
Reference:
JPS 10352
To appear in:
Journal of Pain and Symptom Management
Received Date: 4 November 2019 Revised Date:
17 December 2019
Accepted Date: 18 December 2019
Please cite this article as: Johnston EE, Martinez I, Currie E, Brock KE, Wolfe J, Hospital or Home? Where Should Children Die and How Do We Make that a Reality?, Journal of Pain and Symptom Management (2020), doi: https://doi.org/10.1016/j.jpainsymman.2019.12.370. This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. © 2019 Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine
Hospital or Home? Where Should Children Die and How Do We Make that a Reality?
Emily E Johnston MD, MS1,2, Isaac Martinez BA2, Erin Currie PhD, RN3, Katharine E Brock MD, MS4,5, Joanne Wolfe MD, MPH6-7 1: Department of Pediatrics, University of Alabama at Birmingham, Birmingham, AL, USA 2: Institute for Cancer Outcomes and Survivorship, University of Alabama at Birmingham, Birmingham, AL, USA 3: School of Nursing, University of Alabama at Birmingham, Birmingham, AL, USA 4: Department of Pediatrics, Emory University, Atlanta, GA, USA 5: Aflac Cancer & Blood Disorders Center, Children’s Healthcare of Atlanta, Atlanta, GA, USA 6: Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA 7: Department of Pediatrics, Boston Children’s Hospital, Boston, MA, USA Corresponding Author Emily Johnston MD Institute for Cancer Outcomes and Survivorship 1600 7th Avenue South Lowder Building, Suite 500 Birmingham, AL 35233
Counts Tables: 2 Figures: 0 References: 72 Word Count: 4340
ABSTRACT Context: Most of the 20,000 US children dying of serious illnesses annually die in the hospital. It is unknown if this hospital death predominance reflects family wishes or systemic issues such as lack of hospice access. Hence, we need to better understand location of death preferences for children and their families. Objective: To better understand location of death preferences in North America, we reviewed the literature to examine the evidence for and against home death in seriously ill children (0-18years). Methods: We searched English articles in PubMed, PsycINFO, and Embase published 2000-2018 for articles related to parental, child/adolescent, and provider preference for death location and articles that correlated death location with bereavement or quality of life outcomes. Results: The search results (n=877 articles and n=58 abstracts of interest) were reviewed and 34 relevant articles were identified. Parent, child, and provider preferences, bereavement outcomes, and associated factors all point to some preference for home death. These findings should be interpreted with several caveats: 1) Many studies are small and prone to selection bias, 2) Not all families prefer home death and some that do are not able to achieve home death due to inadequate home support, 3) Studies of bereavement outcomes are lacking. Conclusion: Adequate resources are needed to ensure children can die in their chosen location – be that home, hospital, or free-standing hospice. This review highlights research areas needed to better understand death location preference and programs and policies that will support home death for those that desire it. Key Message This article reviews the evidence for and against home death in seriously ill children. The literature suggests a home death preference, but more research is needed. In particular, studies examining the relationship between death location and bereavement outcomes are lacking. Additionally, programs and policies to support home death are needed. Key Words Pediatrics End-of-life care Location of death Seriously ill children Home death Running Title: Hospital or Home? Where Should Children Die Disclosures: The authors have nothing to disclose. Funding: The work was supported by Alex’s Lemonade Stand Foundation Bala Cynwyd, PA (no number).
INTRODUCTION The majority of the 20,000 US children who die of disease-related causes annually do so in the hospital.1–4 It is unknown if this hospital death predominance reflects family wishes or systemic issues such as lack of pediatric hospice access. When children experience acute life-threatening events with a high chance of recovery, they should be treated at the hospital and some of these children will die despite maximal medical support. They will die, inevitably, in the hospital. The Institute of Medicine advocates for parents to plan a child’s location of death when death is expected.5 When adults know they are dying, most prefer a home death.6,7 As such, the National Quality Forum has endorsed home death as a marker of quality end-of-life care for people with cancer.8 However, home death may not be preferred for children or their families. To support families planning their child’s location of death, we need to better understand location of death preferences for children and their families and the barriers to children dying in their families’ chosen location.
Hospice is an invaluable resource for those dying at home but may not be available to all children. Hospice provides palliative care (PC), including symptom management and emotional support, in the home. These services allow patients to die out of the hospital with adequate support. End-of-life trajectories and needs are different in children and adults, and many hospice agencies are not equipped to care for children. Compared to adults, seriously ill children experience longer disease trajectories:9,10 pediatric hospice patients enroll an average of 103 days and adult patients 66 days.11 Dynamics of young families, siblings, and pediatric patients present unique communication and decision-support challenges.12,13 Additionally, the Concurrent Care Provision of the Affordable Care Act allows children in hospice to receive disease-directed therapy, unlike adults.14 The decision to die at home and the quality of the death experience depends on not only family preference but also the availability and expertise of
local hospice resources. Furthermore, the highly diverse illnesses and conditions affecting children at varying ages and developmental stages require unique care needs. Thus, in addition to understanding families’ end-of-life preferences, it is important to understand barriers to implementing their preferences and potential mitigating strategies.
To our knowledge, the most recent review of preferred location of death for children and adolescents was published in 2013.15 It examined studies of parental preference for location of death, including 8 articles from 5 counties.15 The authors concluded that the opportunity to plan the location of death may be more important than actual location, but more research was needed.15 Notably, only three studies examined preferences in North America and the authors excluded bereavement outcomes, provider preference, and other supporting evidence. To better understand location of death preference in North America, we reviewed the literature to examine the evidence for and against home death in seriously ill children, and included patient/parent preference, provider preference, bereavement outcomes, and other supporting evidence. We have divided our findings into four areas 1) Parent/child perspectives, 2) Parental outcomes, and 3) Provider perspectives including how local resource availability affects home death and hospice referrals. We then discuss 1) General challenges in pediatric home death, 2) Challenges and opportunities in one pediatric population in particular – neonates, 3) Research priorities to address the issues identified, and 4) Opportunities for systemic change. This review compiles essential information to help us better counsel pediatric patients and ensure resources match patient preferences and needs.
METHODS
In the Fall of 2018, we searched English articles in PubMed, PsycINFO, and Embase that were published since 2000 (except for parental outcomes where we included articles published prior to 2000 due to lack of more recent data). Search terms included “site of death”, “place of death”, “home death”, “hospital death”, “hospice” paired with terms to limit to pediatrics (e.g. “pediatric”, “child”). As cultural and resource differences limit generalizability of findings, we included articles from US or Canada with one exception (studies from the UK and Australia that examined parental outcomes based on child’s location of death this topic is of utmost importance and there were only older studies examining it in North America). Search results yielded 877 articles and 58 abstracts of interest. Two authors (EJ and IM) then reviewed and delineated relevant articles independently. They compared and reconciled their lists, and both authors reviewed the final selected articles (n=34).
RESULTS: HOME OR HOSPITAL? The literature review results are summarized in Table 1. Parent/Child Perspectives There are few studies examining parent and/or child preference for location of death. Though many studies are limited by sample size, they remain critical to consider. As with many pediatric end-of-life studies, the majority were conducted in children with cancer and their families.
Two US studies examined location of death preference among adolescents. One study of 17 adolescents with cancer (all receiving cure-directed therapy) showed that 94% wanted to be in their own homes if they were dying.16 This finding is consistent with preferences of adolescents with HIV or AIDS; 85% would also prefer to die at home.17
With regard to parent preferences, one Ontario study addressed three potential locations, including inpatient, home, and free-standing hospice (a rare US location). In this study of 75 bereaved parents, 70% ranked home death as their first choice, 24% hospital first, and 6% free-standing hospice.18 Similarly, in a home PC program in Ontario caring for children with a variety of diagnoses including cancer (56%), neurologic disorders (19%), and cardiac conditions (17%), 16 of 36 charts reviewed showed a documented preference for preferred location of death.19 Of these, 13/16 (81%) preferred home death and the rest preferred hospital death [3/16 (19%)].19 No studies examined parental preference prospectively (prior to the child’s death).
Other studies did not explicitly ask preferred location of death, rather, they examined location of death when given the opportunity to plan the location. In a study on location of death of 140 children with cancer at two children’s hospitals, planning was associated with home death (72% of children whose parents planned their location of death died at home versus 8% in those who did not plan).20 Notably, 28% of children whose parents planned their location of death died in the hospital, the majority of which were planned hospital deaths.20 Additionally, the opportunity to plan location of death was associated with home care involvement, parents feeling more prepared for their child’s end-of-life and very comfortable with the location of death, and lower likelihood of parental decisional regret about the location of death.20 Amongst hospital deaths, 92% of the planned hospital deaths occurred on the ward as opposed to the intensive care unit (ICU), whereas only 33% of the unplanned location hospital deaths occurred in the ward.20 Similarly, Bradshaw examined 145 children dying of cancer at a single institution and found that when children died of their disease, rather than treatment-related mortality, they were more likely to die at home.21 Findings suggest that when families had the opportunity to plan the location of death (when expected due to disease progression) children were more likely to die at home.
However, planning does not always proceed as envisioned. In a study of 12 parents of children with cancer who enrolled in hospice, 5/12 (42%) revoked hospice because of poor symptom management and another child died in uncontrollable pain because the parents did not realize they could return to the hospital.22 These findings are consistent with a qualitative study about PC experiences that included 17 children who died at home with a variety of conditions, albeit predominately cancer.23 Parents expressed frustrations with hospice and home health agency scheduling and staffing, particularly staff that explicitly stated they were unprepared to care for children.23 Given the inadequacies in pediatric home care, many parents wanted services that would have been provided in the hospital and were not available to them through hospice.23 These frustrations and inadequacies with home care/hospice were also reported by patients and families (n= 95) with cancer who enrolled in hospice at a single institution; 41% of families revoked hospice before the child died.24 One unique type of home death, planned home extubation, may be anticipated as the most stressful home death scenario. However, one qualitative study found that while families felt the transport home was stressful, they perceived the arrival at home as a celebration and reported being comforted and fulfilled by the memories.25
Parental Outcomes Parents of children who die experience intense grief,26 which may be impacted by location of the child’s death. However, we found no North American studies examining this relationship after 2000. One Australian study found negative outcomes associated with hospital death: a study of 50 parents who had a child die at least one-year prior showed that when a child died in the hospital, fathers suffered more depression, anxiety, and stress and mothers experienced more complicated grief than when the child died at home.27 We identified two older US studies examining the relationship between location of death and family outcomes. A 1983 study of 94 bereaved families who participated in a US home care program for children with cancer included a personality inventory, family environment scale, and a
behavioral checklist about surviving children that the parents completed.28 This study found that parents whose child died in the hospital were more depressed, anxious, and had more somatic and interpersonal problems than those whose child died in the home.28 Additionally, surviving siblings were more emotionally inhibited, withdrawn, and fearful when their sibling died in the hospital.28 A 1986 study of 62 parents 6-8 years after the death of their child showed parents who participated in a home hospice program had better relationships with their spouse and remaining children, stronger religious beliefs, and less guilt than parents whose child died in the hospital.29 Importantly, hospital-based end-oflife care has evolved considerably since the 1980s, especially with the increasing availability of hospitalbased pediatric palliative care programs,30 making these findings difficult to generalize in the current era.
Provider Perspective and Local Resources Although providers have the perspective of caring for seriously ill children in a variety of locations and circumstances, there are almost no studies of provider perspectives on ideal location of death for children. One study among Ontario pediatric oncology providers showed 89% preferred home death, 2% hospital death, and 9% free-standing hospice facility death.18Some studies show how available resources such as PC and hospice capabilities affect home death rates. For example, a survey of pediatric oncologists showed hospice referrals are associated with hospice availability, and such availability was more likely at large volume centers.31 Additionally, providers report more children dying at home when local hospice programs allow chemotherapy and transfusion.31 Providers believe better pediatric hospice services would allow more children to die at home.31 Notably, the initiation of a PC program at a US pediatric oncology center was associated with higher home death rates32 and hospice referrals.33 The same was found in Ontario, Canada where specialty PC was associated with less hospital death.34 Conversely, a study of children with brain tumors showed the initiation of an end-of-life
program, including home visits, did not change rates of home death.35 Thus, it appears that increased PC and hospice access may correlate with more home death, though not universally.
CHALLENGES IN PEDIATRIC HOME DEATH Despite the aforementioned benefits of home death, increasingly complex pediatric care makes dying at home challenging for patients and supporting agencies.36 Providers, the medical education system, and community hospice all have deficiencies that may prevent children from dying at home. Hospital care of children with complex chronic conditions (CCC) has grown significantly in the last two decades.37,38 In 2012, children with CCCs accounted for over one-fourth of hospitalizations and one-half of pediatric hospital dollars.39 Children with CCCs have difficulty transitioning from hospital to home with 30-day unplanned readmission rates up to 17%.40 The number of inpatient deaths for children with CCCs accounted for 43% of inpatient deaths among US children in 2007.37 Many children with long-standing technology such as a ventilator or parenteral nutrition are not accepted by hospice agencies, leaving the hospital as the only viable option for their end-of-life care.41 Therefore, hospice and other agencies that facilitate home death for children need to be well versed in care of children with CCCs.
There are gaps in medical education that make facilitating location of death conversations challenging for many pediatricians. There is a lack of education about core palliative care concepts – such as managing uncertainty and even less education surrounding home-based care and accurately describing hospice services.42–44 For example, only 38% of program directors felt matriculating residents were competent in palliative medicine and many residents indicated limited or no training in core PC competencies.43 In another study, almost half of attending physicians and two thirds of fellows did not
feel sufficiently knowledgeable to perform the basic PC task of delivering bad news or more complex tasks like describing hospice services.45
Though early PC consultation, hospice involvement, and documentation of advance directives were all significantly associated with a decreased risk of dying in the pediatric ICU in a 2018 study of children with cancer,46 not all families have access to these services. Both the quantity and quality of available pediatric PC and hospice services have been cited as challenges with pediatric home death.47 A 2018 study of pediatric oncology centers showed that only three-fourths of sites had a PC program available.46,48 Neither hospital-based nor local community hospice services were available for 24% of the sites.46,48 Only 269 out of 4,700 hospices surveyed in 2007 reported admitting children and young adults.47 Four pediatric-focused inpatient hospices exist nationwide, and all rely on substantial philanthropic support. The majority of hospice agencies serving children enroll less than 3 pediatric patients a year,49 which makes training pediatric staff challenging. In a Southeastern US study, 90% of hospice nurses reported no training in pediatric palliative or hospice care.50 Potentially related to this lack of trained staff, parents of children who die report concerns about the care they received. Bereaved parents’ concerns about the pediatric hospice system include poor symptom control, challenges with the hospice provider-family relationship, and lack of consistent messaging about the availability of the hospital and hospital-based teams.22,23,51 Hospices may also have trouble finding consistent academic or community-based pediatric partners, reliably implementing Concurrent Care,47 and providing support services to siblings who have higher levels of emotional and behavioral difficulties.52 Even with hospice services, children often return to the hospital due to difficulty with symptomatic and emotional distress in the home.22,23,51 Therefore, inadequate pediatric hospice services may prevent home death for many children and increased work force and novel models of care are needed.
NEONATAL HOME DEATH Challenges Most childhood deaths occur in the first year of life with the majority of those deaths in the first 28 days of life.53 Many of these neonates die in the hospital. Sixty-one percent of the 579 children who died at one US children’s hospital were less than 1 year of age and the neonatal intensive care unit (NICU) was the most common place of death (29.7%).54 In another retrospective review, only 2% of seriously ill infants received PC services.55
Several factors contribute to high rates of hospital deaths in NICU patients and underutilization of PC services. NICU patients face unique challenges to receiving end-of-life care at home. Many NICU patients receive intensive interventions until the end of life and die after discontinuation of lifesustaining interventions.54 This timeline makes the planning of a home death challenging. Furthermore, NICU patients often have unpredictable illness trajectories and experience many “ups and downs”. Hence, NICU providers have difficulty providing accurate prognoses, discussing long-term quality of life issues, and consulting PC early.56,57,58 In a study of recorded parent-clinician conferences in the NICU, prognostic information was delivered by providers broadly in terms of survival rather than detailed information related to prognosis and quality of life.57 Thus, many parents left these conferences feeling more optimistic about their infant’s survival and quality of life than the providers.57 These communication discrepancies make it difficult to discuss end-of-life care even for those infants who are at a high-risk for death. Without planning, neonatal death in the ICU is the default. NICU patients often live their entire lives in an ICU environment. Parents have reported regrets after NICU hospitalizations, wishing they had not agreed to surgical procedures, to have spent more time together, and to have had opportunity to leave with their infant/child before death.59 It remains a priority to investigate whether
the trends in in-hospital neonatal deaths are consistent with family preferences and how to ensure families end-of-life goals are met.
Potential Solutions Earlier integration of pediatric palliative care: Pediatric PC delivered at time of diagnosis provides an added layer of support (emotional, spiritual, psychosocial) to parents during the decision-making process, assists with eliciting goals of care, promotes goal-concordant care, and manages pain and symptoms. Transitioning end-of-life care from the NICU to home requires intensive planning and coordination,60 which can benefit from tools such as checklists to ensure critical items are discussed as a hospice team is added to a patient’s care team.51 Involving pediatric PC and other disciplines such as home health providers, community hospice providers, discharge planners, social workers, and child life, is critical to seamlessly transition dying NICU patients home. Thus, for parents of infants with terminal diagnoses, one solution is to involve PC from diagnosis (even prenatally) to allow ample time to build a relationship with the PC team, discuss the goals-of-care, and, if desired, plan the transition home.61,62 In a retrospective chart review comparing infant deaths before and after implementation of a pediatric PC program in the NICU, end-of-life family meetings were more common among infants receiving PC (n= 21).56 However, more research is needed to determine how early PC affects goal concordant care and home death.
Pediatric palliative transport: Palliative transport is defined as “the medical transport to home or inpatient hospice of children with levels of life-sustaining support demanding a critical care team, with the expectation of death within minutes to days after the cessation of that support”.25 For families who prefer a home death, pediatric palliative transport is an emerging resource within palliative care.
Pediatric palliative transport has been implemented in culturally diverse and remote settings for NICU patients.63 Following a palliative transport, bereaved parents reported that they were thankful for the opportunity to be together in their home before their child died and that the memories surrounding their experiences were comforting.25 Given the frequency of neonatal deaths after withdrawal of lifesustaining interventions,54 pediatric palliative transport may provide an avenue to home death for families with infants receiving life-sustaining technological support. If the care coordination and resources are available, pediatric palliative transport may align NICU family preferences at the end-oflife with the care that they receive and promote better grief outcomes.60,64
RESEARCH PRIORITIES Studies of end-of-life care in children are challenging; however, end-of-life preferences should be elucidated to determine how to best counsel families and allocate resources as highlighted in Table 2. Existing data about location of death preferences are primarily in children with cancer, as such, there is a critical need to determine location of death preferences in other seriously ill children, including neonates. A common approach is to survey bereaved parents; however, there is significant selection bias in these studies. First, those families experiencing easier bereavement may be more likely to respond. Second, the likelihood of a child dying at home varies with underlying diagnosis4 and, presumably with the rapidity of the end-of-life process, both of which could affect bereavement outcomes and be important confounders to consider. Third, families who have not moved or changed phone numbers since the death of their child are also more likely to be included. Prospective efforts such as Pediatric Palliative Care Research Network Shared Data and Research Project that systematically collecting data from seriously ill children and their families are essential. Studies including healthcare provider perspectives would be helpful given their involvement in family counseling. Another important
area of further investigation includes assessment of family bereavement outcomes related to child location of death – as evidence in the lack of North American data after 2000. Most of the studies were conducted before the implementation of the Concurrent Care Provision of the Affordable Care Act, the growth of community based pediatric palliative care,65 and development of partnerships between hospital based pediatric palliative care teams and local hospice agencies.66 Most were also conducted early in the growth of hospital based pediatric palliative care teams.30 Therefore, the current experience of children dying at home with hospice or in the hospital is largely unknown and child, parent, and provider perspectives on the ideal location of death may be different in the current era than was reported in these studies. The parent and provider perspectives above highlight inadequacies in hospice care for children at home. As we discuss below, improved pediatric palliative care training at all levels may help overcome this barrier. However, research to develop innovative models of providing pediatric hospice and palliative care in the community may also help improve the quality of pediatric hospice and home-based palliative care. This research should include how children with different disease trajectories may need different systems of care. Finally, there was little on the experience of families who choose to die in the hospital and how to best support them through things such as end-of-life ordersets, rooms with ample space for friends and family at end-of-life, and hospital policies around end-of-life care and resuscitation.
OPPORTUNITIES FOR SYSTEMIC CHANGE Substantial changes are needed to improve access to and quality of pediatric hospice care for families who desire home-based end-of-life care or death (Table 2). Earlier education about palliative and hospice care is needed at all levels of undergraduate and graduate medical education and for advanced practice providers. For example, training programs should consider requiring home-based visits for
seriously ill patients and their families. Education to improve the timing and rates of advance care planning as well as to dispel myths for both medical providers and families should be implemented. For instance, families and pediatricians who equate PC and end-of-life care may decline early involvement of PC for many who may benefit.67,68 These types of education can be done at institutional and state levels though hospice and palliative care organizations and via social media or parent support groups via parent champions, especially in the era of online parent support networks.69,70
Provider knowledge of PC and hospice may not be sufficient to improve goal concordance in location of death as pediatric hospice access remains inadequate. This resource gap has led to children dying at home with pain and without support, or a need to return to the hospital despite a desire for home death.22 As noted, only 37% of hospices report pediatric-specific training71 and most care for very few children annually. Therefore, hospital programs and government policies that support quality pediatric hospice access for all children are needed. An improved network of community-based pediatric PC is needed in most states to care for the growing volume of children with complex medical conditions, such as the program in Massachusetts which provides symptom management, nursing support, and other services to children with life-limiting illnesses at no cost to families.72 State and national legislature will need to consider funding pediatric palliative and hospice care and improving policies and reimbursement around care coordination for these high-risk, time-intensive patients.73 Hospices should partner with state and national organizations as well as their leading pediatric institutions to generate networking opportunities, and have access to ‘on-call’ pediatric expertise and continuing education as in the Greater Illinois Pediatric Palliative Care Coaliation.74 Telehealth and annual “hospice forums” may be two modes ensuring pediatric expertise access in rural areas without adequate pediatric palliative or hospice care.
Healthcare reform is an ongoing topic in the US with an emphasis on value-based repayment, but valuebased repayment cannot occur until we characterize high-quality care. Location of death is easily measurable and could be part of value-based repayment calculations given the National Quality Forum’s8 endorsement of home death as a quality marker for oncology. However, given that not all children families prefer home death and many do not have access to high quality pediatric hospice, we need to ensure that we have hospital policies and reimbursement models that support hospital death and that programs are not penalized when children die in the hospital by choice.
SUMMARY Parent, child, and provider preferences, parental outcomes, and associated factors all point to a preference for home death for children with advanced illness, particularly cancer. Most parents, children, and providers prefer home death and the long-term outcomes for parents (even 6-8 years after the death of their child) may be better when their child died at home. Additionally, extra resources and decision support are associated with increased hospice referrals and home death. However, these findings should be interpreted with several caveats: 1) Many studies are small and prone to selection bias, 2) Not all families prefer home death and some that do are not able to achieve home death due to inadequate home support, 3) Studies of bereavement outcomes are lacking, 4) There is very little evidence among families of seriously ill neonates, 5) The studies reported were primarily from Canada and the US with a few exceptions (UK and Australia for bereavement outcomes) which all have slightly different systems of care so all findings will not be applicable in all settings. For example, free-standing hospices are rare in the U.S. and Canada, but more common in the UK. Thus families need opportunities for access to high quality home and hospital end-of-life care and, perhaps, as Bluebond-Langer
concluded, the opportunity to plan the location of death may be more important than actual location.15 Furthermore, if we empower children and families to choose their location of death, we need to have the resources to make their choices a reality. The research priorities outlined above, improved trainee education, early palliative care, hospice/pediatric specialty center networks, hospital programs to support home death, and reimbursement changes are all needed to ensure that children and families who desire a home death can have the high-quality death they deserve.
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Table 1: Home or Hospital Death – the Evidence Evidence for Home Death Child • 16/17 adolescents with cancer Perspective wanted to be home if dying16 • 41/48 adolescents with HIV/AIDS would want to die at home17 Parent • 57/72 bereaved oncology parents Perspective ranked home as the preferred location of death18 • 13/16 parents in a home palliative care program preferred home death19 Opportunity • 63/88 of parents whose child to Plan died of cancer and planned their child’s location of death, planned for a home death20 • Compassionate extubation at home was a positive experience25
Evidence for Hospital Death
• • •
•
17/71 bereaved oncology parents ranked the hospital as preferred location of death18 3/16 parents in a home palliative care program preferred hospital death19 25/88 of parents whose child died of cancer and planned their child’s location of death, planned for a hospital death20’ 44/107 parents of children with cancer on hospice dis-enrolled 22,24
•
Parental Outcomes
• • •
Provider Preference
•
Local Resources
•
•
Home death associated with less negative psychologic outcomes among bereaved parents27, 28 Home death associated with better bereavement outcomes for siblings28 Bereaved parents who participated in a home hospice program had stronger relationships with their family, stronger religious beliefs, and less guilt than bereaved parents whose child died in the hosiptal29 40/46 pediatric oncology providers ranked home as the preferred location of death18 Increased home death is associated with hospice programs that provide chemotherapy and transfusions31 Palliative care program initiation is associated with higher home death rates and hospice referrals32-34
•
Parents experienced frustration with hospice services23
End-of-life care program for children with brain tumors did not changes rates of home death35
Table 2: Moving the Field Forward: Research and Systematic Priorities to Allow Children with Serious Illness to Die in their Chosen Location Research Priorities 1. Elucidate location of death preference in children with serious illnesses other than cancer a. Efforts to systematically and prospectively collect location of death preference and bereavement outcomes b. Explore providers’ perspectives on preferred location of death for children with serious illness 2. Assessment of how the Concurrent Care Provision of the Affordable Care Act has affected end-of-life preferences 3. Determine best practices in delivering pediatric hospice in resource poor areas a. Pilot studies of telehealth for delivery of pediatric palliative care b. Determine how pediatric palliative care programs can best partner with community hospice agencies Opportunities for Systemic Change 1. Improved medical education about palliative and hospice care a. Integrating home visits into medical training b. Required sessions on advance care planning 2. Increased hospice access for children a. Improved network of hospice agencies and pediatric palliative care programs b. Increased government funding of pediatric palliative and hospice care c. Reimbursement for care coordination for seriously ill children 3. Define high quality care in end-of-life care for seriously ill children
S0885-3924(19)31084-X
DOI:
https://doi.org/10.1016/j.jpainsymman.2019.12.370
Reference:
JPS 10352
To appear in:
Journal of Pain and Symptom Management
Received Date: 4 November 2019 Revised Date:
17 December 2019
Accepted Date: 18 December 2019
Please cite this article as: Johnston EE, Martinez I, Currie E, Brock KE, Wolfe J, Hospital or Home? Where Should Children Die and How Do We Make that a Reality?, Journal of Pain and Symptom Management (2020), doi: https://doi.org/10.1016/j.jpainsymman.2019.12.370. This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. © 2019 Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine
Hospital or Home? Where Should Children Die and How Do We Make that a Reality?
Emily E Johnston MD, MS1,2, Isaac Martinez BA2, Erin Currie PhD, RN3, Katharine E Brock MD, MS4,5, Joanne Wolfe MD, MPH6-7 1: Department of Pediatrics, University of Alabama at Birmingham, Birmingham, AL, USA 2: Institute for Cancer Outcomes and Survivorship, University of Alabama at Birmingham, Birmingham, AL, USA 3: School of Nursing, University of Alabama at Birmingham, Birmingham, AL, USA 4: Department of Pediatrics, Emory University, Atlanta, GA, USA 5: Aflac Cancer & Blood Disorders Center, Children’s Healthcare of Atlanta, Atlanta, GA, USA 6: Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA 7: Department of Pediatrics, Boston Children’s Hospital, Boston, MA, USA Corresponding Author Emily Johnston MD Institute for Cancer Outcomes and Survivorship 1600 7th Avenue South Lowder Building, Suite 500 Birmingham, AL 35233
Counts Tables: 2 Figures: 0 References: 72 Word Count: 4340
ABSTRACT Context: Most of the 20,000 US children dying of serious illnesses annually die in the hospital. It is unknown if this hospital death predominance reflects family wishes or systemic issues such as lack of hospice access. Hence, we need to better understand location of death preferences for children and their families. Objective: To better understand location of death preferences in North America, we reviewed the literature to examine the evidence for and against home death in seriously ill children (0-18years). Methods: We searched English articles in PubMed, PsycINFO, and Embase published 2000-2018 for articles related to parental, child/adolescent, and provider preference for death location and articles that correlated death location with bereavement or quality of life outcomes. Results: The search results (n=877 articles and n=58 abstracts of interest) were reviewed and 34 relevant articles were identified. Parent, child, and provider preferences, bereavement outcomes, and associated factors all point to some preference for home death. These findings should be interpreted with several caveats: 1) Many studies are small and prone to selection bias, 2) Not all families prefer home death and some that do are not able to achieve home death due to inadequate home support, 3) Studies of bereavement outcomes are lacking. Conclusion: Adequate resources are needed to ensure children can die in their chosen location – be that home, hospital, or free-standing hospice. This review highlights research areas needed to better understand death location preference and programs and policies that will support home death for those that desire it. Key Message This article reviews the evidence for and against home death in seriously ill children. The literature suggests a home death preference, but more research is needed. In particular, studies examining the relationship between death location and bereavement outcomes are lacking. Additionally, programs and policies to support home death are needed. Key Words Pediatrics End-of-life care Location of death Seriously ill children Home death Running Title: Hospital or Home? Where Should Children Die Disclosures: The authors have nothing to disclose. Funding: The work was supported by Alex’s Lemonade Stand Foundation Bala Cynwyd, PA (no number).
INTRODUCTION The majority of the 20,000 US children who die of disease-related causes annually do so in the hospital.1–4 It is unknown if this hospital death predominance reflects family wishes or systemic issues such as lack of pediatric hospice access. When children experience acute life-threatening events with a high chance of recovery, they should be treated at the hospital and some of these children will die despite maximal medical support. They will die, inevitably, in the hospital. The Institute of Medicine advocates for parents to plan a child’s location of death when death is expected.5 When adults know they are dying, most prefer a home death.6,7 As such, the National Quality Forum has endorsed home death as a marker of quality end-of-life care for people with cancer.8 However, home death may not be preferred for children or their families. To support families planning their child’s location of death, we need to better understand location of death preferences for children and their families and the barriers to children dying in their families’ chosen location.
Hospice is an invaluable resource for those dying at home but may not be available to all children. Hospice provides palliative care (PC), including symptom management and emotional support, in the home. These services allow patients to die out of the hospital with adequate support. End-of-life trajectories and needs are different in children and adults, and many hospice agencies are not equipped to care for children. Compared to adults, seriously ill children experience longer disease trajectories:9,10 pediatric hospice patients enroll an average of 103 days and adult patients 66 days.11 Dynamics of young families, siblings, and pediatric patients present unique communication and decision-support challenges.12,13 Additionally, the Concurrent Care Provision of the Affordable Care Act allows children in hospice to receive disease-directed therapy, unlike adults.14 The decision to die at home and the quality of the death experience depends on not only family preference but also the availability and expertise of
local hospice resources. Furthermore, the highly diverse illnesses and conditions affecting children at varying ages and developmental stages require unique care needs. Thus, in addition to understanding families’ end-of-life preferences, it is important to understand barriers to implementing their preferences and potential mitigating strategies.
To our knowledge, the most recent review of preferred location of death for children and adolescents was published in 2013.15 It examined studies of parental preference for location of death, including 8 articles from 5 counties.15 The authors concluded that the opportunity to plan the location of death may be more important than actual location, but more research was needed.15 Notably, only three studies examined preferences in North America and the authors excluded bereavement outcomes, provider preference, and other supporting evidence. To better understand location of death preference in North America, we reviewed the literature to examine the evidence for and against home death in seriously ill children, and included patient/parent preference, provider preference, bereavement outcomes, and other supporting evidence. We have divided our findings into four areas 1) Parent/child perspectives, 2) Parental outcomes, and 3) Provider perspectives including how local resource availability affects home death and hospice referrals. We then discuss 1) General challenges in pediatric home death, 2) Challenges and opportunities in one pediatric population in particular – neonates, 3) Research priorities to address the issues identified, and 4) Opportunities for systemic change. This review compiles essential information to help us better counsel pediatric patients and ensure resources match patient preferences and needs.
METHODS
In the Fall of 2018, we searched English articles in PubMed, PsycINFO, and Embase that were published since 2000 (except for parental outcomes where we included articles published prior to 2000 due to lack of more recent data). Search terms included “site of death”, “place of death”, “home death”, “hospital death”, “hospice” paired with terms to limit to pediatrics (e.g. “pediatric”, “child”). As cultural and resource differences limit generalizability of findings, we included articles from US or Canada with one exception (studies from the UK and Australia that examined parental outcomes based on child’s location of death this topic is of utmost importance and there were only older studies examining it in North America). Search results yielded 877 articles and 58 abstracts of interest. Two authors (EJ and IM) then reviewed and delineated relevant articles independently. They compared and reconciled their lists, and both authors reviewed the final selected articles (n=34).
RESULTS: HOME OR HOSPITAL? The literature review results are summarized in Table 1. Parent/Child Perspectives There are few studies examining parent and/or child preference for location of death. Though many studies are limited by sample size, they remain critical to consider. As with many pediatric end-of-life studies, the majority were conducted in children with cancer and their families.
Two US studies examined location of death preference among adolescents. One study of 17 adolescents with cancer (all receiving cure-directed therapy) showed that 94% wanted to be in their own homes if they were dying.16 This finding is consistent with preferences of adolescents with HIV or AIDS; 85% would also prefer to die at home.17
With regard to parent preferences, one Ontario study addressed three potential locations, including inpatient, home, and free-standing hospice (a rare US location). In this study of 75 bereaved parents, 70% ranked home death as their first choice, 24% hospital first, and 6% free-standing hospice.18 Similarly, in a home PC program in Ontario caring for children with a variety of diagnoses including cancer (56%), neurologic disorders (19%), and cardiac conditions (17%), 16 of 36 charts reviewed showed a documented preference for preferred location of death.19 Of these, 13/16 (81%) preferred home death and the rest preferred hospital death [3/16 (19%)].19 No studies examined parental preference prospectively (prior to the child’s death).
Other studies did not explicitly ask preferred location of death, rather, they examined location of death when given the opportunity to plan the location. In a study on location of death of 140 children with cancer at two children’s hospitals, planning was associated with home death (72% of children whose parents planned their location of death died at home versus 8% in those who did not plan).20 Notably, 28% of children whose parents planned their location of death died in the hospital, the majority of which were planned hospital deaths.20 Additionally, the opportunity to plan location of death was associated with home care involvement, parents feeling more prepared for their child’s end-of-life and very comfortable with the location of death, and lower likelihood of parental decisional regret about the location of death.20 Amongst hospital deaths, 92% of the planned hospital deaths occurred on the ward as opposed to the intensive care unit (ICU), whereas only 33% of the unplanned location hospital deaths occurred in the ward.20 Similarly, Bradshaw examined 145 children dying of cancer at a single institution and found that when children died of their disease, rather than treatment-related mortality, they were more likely to die at home.21 Findings suggest that when families had the opportunity to plan the location of death (when expected due to disease progression) children were more likely to die at home.
However, planning does not always proceed as envisioned. In a study of 12 parents of children with cancer who enrolled in hospice, 5/12 (42%) revoked hospice because of poor symptom management and another child died in uncontrollable pain because the parents did not realize they could return to the hospital.22 These findings are consistent with a qualitative study about PC experiences that included 17 children who died at home with a variety of conditions, albeit predominately cancer.23 Parents expressed frustrations with hospice and home health agency scheduling and staffing, particularly staff that explicitly stated they were unprepared to care for children.23 Given the inadequacies in pediatric home care, many parents wanted services that would have been provided in the hospital and were not available to them through hospice.23 These frustrations and inadequacies with home care/hospice were also reported by patients and families (n= 95) with cancer who enrolled in hospice at a single institution; 41% of families revoked hospice before the child died.24 One unique type of home death, planned home extubation, may be anticipated as the most stressful home death scenario. However, one qualitative study found that while families felt the transport home was stressful, they perceived the arrival at home as a celebration and reported being comforted and fulfilled by the memories.25
Parental Outcomes Parents of children who die experience intense grief,26 which may be impacted by location of the child’s death. However, we found no North American studies examining this relationship after 2000. One Australian study found negative outcomes associated with hospital death: a study of 50 parents who had a child die at least one-year prior showed that when a child died in the hospital, fathers suffered more depression, anxiety, and stress and mothers experienced more complicated grief than when the child died at home.27 We identified two older US studies examining the relationship between location of death and family outcomes. A 1983 study of 94 bereaved families who participated in a US home care program for children with cancer included a personality inventory, family environment scale, and a
behavioral checklist about surviving children that the parents completed.28 This study found that parents whose child died in the hospital were more depressed, anxious, and had more somatic and interpersonal problems than those whose child died in the home.28 Additionally, surviving siblings were more emotionally inhibited, withdrawn, and fearful when their sibling died in the hospital.28 A 1986 study of 62 parents 6-8 years after the death of their child showed parents who participated in a home hospice program had better relationships with their spouse and remaining children, stronger religious beliefs, and less guilt than parents whose child died in the hospital.29 Importantly, hospital-based end-oflife care has evolved considerably since the 1980s, especially with the increasing availability of hospitalbased pediatric palliative care programs,30 making these findings difficult to generalize in the current era.
Provider Perspective and Local Resources Although providers have the perspective of caring for seriously ill children in a variety of locations and circumstances, there are almost no studies of provider perspectives on ideal location of death for children. One study among Ontario pediatric oncology providers showed 89% preferred home death, 2% hospital death, and 9% free-standing hospice facility death.18Some studies show how available resources such as PC and hospice capabilities affect home death rates. For example, a survey of pediatric oncologists showed hospice referrals are associated with hospice availability, and such availability was more likely at large volume centers.31 Additionally, providers report more children dying at home when local hospice programs allow chemotherapy and transfusion.31 Providers believe better pediatric hospice services would allow more children to die at home.31 Notably, the initiation of a PC program at a US pediatric oncology center was associated with higher home death rates32 and hospice referrals.33 The same was found in Ontario, Canada where specialty PC was associated with less hospital death.34 Conversely, a study of children with brain tumors showed the initiation of an end-of-life
program, including home visits, did not change rates of home death.35 Thus, it appears that increased PC and hospice access may correlate with more home death, though not universally.
CHALLENGES IN PEDIATRIC HOME DEATH Despite the aforementioned benefits of home death, increasingly complex pediatric care makes dying at home challenging for patients and supporting agencies.36 Providers, the medical education system, and community hospice all have deficiencies that may prevent children from dying at home. Hospital care of children with complex chronic conditions (CCC) has grown significantly in the last two decades.37,38 In 2012, children with CCCs accounted for over one-fourth of hospitalizations and one-half of pediatric hospital dollars.39 Children with CCCs have difficulty transitioning from hospital to home with 30-day unplanned readmission rates up to 17%.40 The number of inpatient deaths for children with CCCs accounted for 43% of inpatient deaths among US children in 2007.37 Many children with long-standing technology such as a ventilator or parenteral nutrition are not accepted by hospice agencies, leaving the hospital as the only viable option for their end-of-life care.41 Therefore, hospice and other agencies that facilitate home death for children need to be well versed in care of children with CCCs.
There are gaps in medical education that make facilitating location of death conversations challenging for many pediatricians. There is a lack of education about core palliative care concepts – such as managing uncertainty and even less education surrounding home-based care and accurately describing hospice services.42–44 For example, only 38% of program directors felt matriculating residents were competent in palliative medicine and many residents indicated limited or no training in core PC competencies.43 In another study, almost half of attending physicians and two thirds of fellows did not
feel sufficiently knowledgeable to perform the basic PC task of delivering bad news or more complex tasks like describing hospice services.45
Though early PC consultation, hospice involvement, and documentation of advance directives were all significantly associated with a decreased risk of dying in the pediatric ICU in a 2018 study of children with cancer,46 not all families have access to these services. Both the quantity and quality of available pediatric PC and hospice services have been cited as challenges with pediatric home death.47 A 2018 study of pediatric oncology centers showed that only three-fourths of sites had a PC program available.46,48 Neither hospital-based nor local community hospice services were available for 24% of the sites.46,48 Only 269 out of 4,700 hospices surveyed in 2007 reported admitting children and young adults.47 Four pediatric-focused inpatient hospices exist nationwide, and all rely on substantial philanthropic support. The majority of hospice agencies serving children enroll less than 3 pediatric patients a year,49 which makes training pediatric staff challenging. In a Southeastern US study, 90% of hospice nurses reported no training in pediatric palliative or hospice care.50 Potentially related to this lack of trained staff, parents of children who die report concerns about the care they received. Bereaved parents’ concerns about the pediatric hospice system include poor symptom control, challenges with the hospice provider-family relationship, and lack of consistent messaging about the availability of the hospital and hospital-based teams.22,23,51 Hospices may also have trouble finding consistent academic or community-based pediatric partners, reliably implementing Concurrent Care,47 and providing support services to siblings who have higher levels of emotional and behavioral difficulties.52 Even with hospice services, children often return to the hospital due to difficulty with symptomatic and emotional distress in the home.22,23,51 Therefore, inadequate pediatric hospice services may prevent home death for many children and increased work force and novel models of care are needed.
NEONATAL HOME DEATH Challenges Most childhood deaths occur in the first year of life with the majority of those deaths in the first 28 days of life.53 Many of these neonates die in the hospital. Sixty-one percent of the 579 children who died at one US children’s hospital were less than 1 year of age and the neonatal intensive care unit (NICU) was the most common place of death (29.7%).54 In another retrospective review, only 2% of seriously ill infants received PC services.55
Several factors contribute to high rates of hospital deaths in NICU patients and underutilization of PC services. NICU patients face unique challenges to receiving end-of-life care at home. Many NICU patients receive intensive interventions until the end of life and die after discontinuation of lifesustaining interventions.54 This timeline makes the planning of a home death challenging. Furthermore, NICU patients often have unpredictable illness trajectories and experience many “ups and downs”. Hence, NICU providers have difficulty providing accurate prognoses, discussing long-term quality of life issues, and consulting PC early.56,57,58 In a study of recorded parent-clinician conferences in the NICU, prognostic information was delivered by providers broadly in terms of survival rather than detailed information related to prognosis and quality of life.57 Thus, many parents left these conferences feeling more optimistic about their infant’s survival and quality of life than the providers.57 These communication discrepancies make it difficult to discuss end-of-life care even for those infants who are at a high-risk for death. Without planning, neonatal death in the ICU is the default. NICU patients often live their entire lives in an ICU environment. Parents have reported regrets after NICU hospitalizations, wishing they had not agreed to surgical procedures, to have spent more time together, and to have had opportunity to leave with their infant/child before death.59 It remains a priority to investigate whether
the trends in in-hospital neonatal deaths are consistent with family preferences and how to ensure families end-of-life goals are met.
Potential Solutions Earlier integration of pediatric palliative care: Pediatric PC delivered at time of diagnosis provides an added layer of support (emotional, spiritual, psychosocial) to parents during the decision-making process, assists with eliciting goals of care, promotes goal-concordant care, and manages pain and symptoms. Transitioning end-of-life care from the NICU to home requires intensive planning and coordination,60 which can benefit from tools such as checklists to ensure critical items are discussed as a hospice team is added to a patient’s care team.51 Involving pediatric PC and other disciplines such as home health providers, community hospice providers, discharge planners, social workers, and child life, is critical to seamlessly transition dying NICU patients home. Thus, for parents of infants with terminal diagnoses, one solution is to involve PC from diagnosis (even prenatally) to allow ample time to build a relationship with the PC team, discuss the goals-of-care, and, if desired, plan the transition home.61,62 In a retrospective chart review comparing infant deaths before and after implementation of a pediatric PC program in the NICU, end-of-life family meetings were more common among infants receiving PC (n= 21).56 However, more research is needed to determine how early PC affects goal concordant care and home death.
Pediatric palliative transport: Palliative transport is defined as “the medical transport to home or inpatient hospice of children with levels of life-sustaining support demanding a critical care team, with the expectation of death within minutes to days after the cessation of that support”.25 For families who prefer a home death, pediatric palliative transport is an emerging resource within palliative care.
Pediatric palliative transport has been implemented in culturally diverse and remote settings for NICU patients.63 Following a palliative transport, bereaved parents reported that they were thankful for the opportunity to be together in their home before their child died and that the memories surrounding their experiences were comforting.25 Given the frequency of neonatal deaths after withdrawal of lifesustaining interventions,54 pediatric palliative transport may provide an avenue to home death for families with infants receiving life-sustaining technological support. If the care coordination and resources are available, pediatric palliative transport may align NICU family preferences at the end-oflife with the care that they receive and promote better grief outcomes.60,64
RESEARCH PRIORITIES Studies of end-of-life care in children are challenging; however, end-of-life preferences should be elucidated to determine how to best counsel families and allocate resources as highlighted in Table 2. Existing data about location of death preferences are primarily in children with cancer, as such, there is a critical need to determine location of death preferences in other seriously ill children, including neonates. A common approach is to survey bereaved parents; however, there is significant selection bias in these studies. First, those families experiencing easier bereavement may be more likely to respond. Second, the likelihood of a child dying at home varies with underlying diagnosis4 and, presumably with the rapidity of the end-of-life process, both of which could affect bereavement outcomes and be important confounders to consider. Third, families who have not moved or changed phone numbers since the death of their child are also more likely to be included. Prospective efforts such as Pediatric Palliative Care Research Network Shared Data and Research Project that systematically collecting data from seriously ill children and their families are essential. Studies including healthcare provider perspectives would be helpful given their involvement in family counseling. Another important
area of further investigation includes assessment of family bereavement outcomes related to child location of death – as evidence in the lack of North American data after 2000. Most of the studies were conducted before the implementation of the Concurrent Care Provision of the Affordable Care Act, the growth of community based pediatric palliative care,65 and development of partnerships between hospital based pediatric palliative care teams and local hospice agencies.66 Most were also conducted early in the growth of hospital based pediatric palliative care teams.30 Therefore, the current experience of children dying at home with hospice or in the hospital is largely unknown and child, parent, and provider perspectives on the ideal location of death may be different in the current era than was reported in these studies. The parent and provider perspectives above highlight inadequacies in hospice care for children at home. As we discuss below, improved pediatric palliative care training at all levels may help overcome this barrier. However, research to develop innovative models of providing pediatric hospice and palliative care in the community may also help improve the quality of pediatric hospice and home-based palliative care. This research should include how children with different disease trajectories may need different systems of care. Finally, there was little on the experience of families who choose to die in the hospital and how to best support them through things such as end-of-life ordersets, rooms with ample space for friends and family at end-of-life, and hospital policies around end-of-life care and resuscitation.
OPPORTUNITIES FOR SYSTEMIC CHANGE Substantial changes are needed to improve access to and quality of pediatric hospice care for families who desire home-based end-of-life care or death (Table 2). Earlier education about palliative and hospice care is needed at all levels of undergraduate and graduate medical education and for advanced practice providers. For example, training programs should consider requiring home-based visits for
seriously ill patients and their families. Education to improve the timing and rates of advance care planning as well as to dispel myths for both medical providers and families should be implemented. For instance, families and pediatricians who equate PC and end-of-life care may decline early involvement of PC for many who may benefit.67,68 These types of education can be done at institutional and state levels though hospice and palliative care organizations and via social media or parent support groups via parent champions, especially in the era of online parent support networks.69,70
Provider knowledge of PC and hospice may not be sufficient to improve goal concordance in location of death as pediatric hospice access remains inadequate. This resource gap has led to children dying at home with pain and without support, or a need to return to the hospital despite a desire for home death.22 As noted, only 37% of hospices report pediatric-specific training71 and most care for very few children annually. Therefore, hospital programs and government policies that support quality pediatric hospice access for all children are needed. An improved network of community-based pediatric PC is needed in most states to care for the growing volume of children with complex medical conditions, such as the program in Massachusetts which provides symptom management, nursing support, and other services to children with life-limiting illnesses at no cost to families.72 State and national legislature will need to consider funding pediatric palliative and hospice care and improving policies and reimbursement around care coordination for these high-risk, time-intensive patients.73 Hospices should partner with state and national organizations as well as their leading pediatric institutions to generate networking opportunities, and have access to ‘on-call’ pediatric expertise and continuing education as in the Greater Illinois Pediatric Palliative Care Coaliation.74 Telehealth and annual “hospice forums” may be two modes ensuring pediatric expertise access in rural areas without adequate pediatric palliative or hospice care.
Healthcare reform is an ongoing topic in the US with an emphasis on value-based repayment, but valuebased repayment cannot occur until we characterize high-quality care. Location of death is easily measurable and could be part of value-based repayment calculations given the National Quality Forum’s8 endorsement of home death as a quality marker for oncology. However, given that not all children families prefer home death and many do not have access to high quality pediatric hospice, we need to ensure that we have hospital policies and reimbursement models that support hospital death and that programs are not penalized when children die in the hospital by choice.
SUMMARY Parent, child, and provider preferences, parental outcomes, and associated factors all point to a preference for home death for children with advanced illness, particularly cancer. Most parents, children, and providers prefer home death and the long-term outcomes for parents (even 6-8 years after the death of their child) may be better when their child died at home. Additionally, extra resources and decision support are associated with increased hospice referrals and home death. However, these findings should be interpreted with several caveats: 1) Many studies are small and prone to selection bias, 2) Not all families prefer home death and some that do are not able to achieve home death due to inadequate home support, 3) Studies of bereavement outcomes are lacking, 4) There is very little evidence among families of seriously ill neonates, 5) The studies reported were primarily from Canada and the US with a few exceptions (UK and Australia for bereavement outcomes) which all have slightly different systems of care so all findings will not be applicable in all settings. For example, free-standing hospices are rare in the U.S. and Canada, but more common in the UK. Thus families need opportunities for access to high quality home and hospital end-of-life care and, perhaps, as Bluebond-Langer
concluded, the opportunity to plan the location of death may be more important than actual location.15 Furthermore, if we empower children and families to choose their location of death, we need to have the resources to make their choices a reality. The research priorities outlined above, improved trainee education, early palliative care, hospice/pediatric specialty center networks, hospital programs to support home death, and reimbursement changes are all needed to ensure that children and families who desire a home death can have the high-quality death they deserve.
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Table 1: Home or Hospital Death – the Evidence Evidence for Home Death Child • 16/17 adolescents with cancer Perspective wanted to be home if dying16 • 41/48 adolescents with HIV/AIDS would want to die at home17 Parent • 57/72 bereaved oncology parents Perspective ranked home as the preferred location of death18 • 13/16 parents in a home palliative care program preferred home death19 Opportunity • 63/88 of parents whose child to Plan died of cancer and planned their child’s location of death, planned for a home death20 • Compassionate extubation at home was a positive experience25
Evidence for Hospital Death
• • •
•
17/71 bereaved oncology parents ranked the hospital as preferred location of death18 3/16 parents in a home palliative care program preferred hospital death19 25/88 of parents whose child died of cancer and planned their child’s location of death, planned for a hospital death20’ 44/107 parents of children with cancer on hospice dis-enrolled 22,24
•
Parental Outcomes
• • •
Provider Preference
•
Local Resources
•
•
Home death associated with less negative psychologic outcomes among bereaved parents27, 28 Home death associated with better bereavement outcomes for siblings28 Bereaved parents who participated in a home hospice program had stronger relationships with their family, stronger religious beliefs, and less guilt than bereaved parents whose child died in the hosiptal29 40/46 pediatric oncology providers ranked home as the preferred location of death18 Increased home death is associated with hospice programs that provide chemotherapy and transfusions31 Palliative care program initiation is associated with higher home death rates and hospice referrals32-34
•
Parents experienced frustration with hospice services23
End-of-life care program for children with brain tumors did not changes rates of home death35
Table 2: Moving the Field Forward: Research and Systematic Priorities to Allow Children with Serious Illness to Die in their Chosen Location Research Priorities 1. Elucidate location of death preference in children with serious illnesses other than cancer a. Efforts to systematically and prospectively collect location of death preference and bereavement outcomes b. Explore providers’ perspectives on preferred location of death for children with serious illness 2. Assessment of how the Concurrent Care Provision of the Affordable Care Act has affected end-of-life preferences 3. Determine best practices in delivering pediatric hospice in resource poor areas a. Pilot studies of telehealth for delivery of pediatric palliative care b. Determine how pediatric palliative care programs can best partner with community hospice agencies Opportunities for Systemic Change 1. Improved medical education about palliative and hospice care a. Integrating home visits into medical training b. Required sessions on advance care planning 2. Increased hospice access for children a. Improved network of hospice agencies and pediatric palliative care programs b. Increased government funding of pediatric palliative and hospice care c. Reimbursement for care coordination for seriously ill children 3. Define high quality care in end-of-life care for seriously ill children