Caring for a child with a serious or life-limiting illness presents many challenges for families and health care providers. Through that experience (and, many times, as it ends), parents are compelled to find and make meaning from their ultimate loss and the many losses along the way. In this Advocacy Case Study, we describe the experiences that led a bereaved mother to seek to harness the insights from her own family’s loss to help support other families facing the challenges and complexities of a child’s serious illness. Her family initially established a family foundation to advocate for palliative care. She later partnered with her family’s general pediatrician and the American Academy of Pediatrics to educate providers and bring parent voices to health care provider discussions. This work eventually led to the development of the Courageous Parents Network, a nonprofit focused on making these parent and provider voices widely available to families and providers through a Web-based collection of videos, blogs, podcasts, and printable guides. Through these insights, the organization addresses feelings of isolation, anxiety, and grief. In addition, these voices illustrate the power and benefits of the growing acceptance of pediatric palliative care practices. Important lessons learned through these efforts include: (1) the power of stories for validation, healing, and understanding; (2) opportunity to extend the reach of pediatric palliative care through provider education and skill-building; (3) critical importance of the parent–provider advocacy collaboration; and (4) necessity of market testing and continuous improvement.

Families of children living with serious illness confront a hidden world of experiences and stresses, including anticipatory grief, the burdens of complex decision-making, worries about uncertain consequences, and the dread of their child’s suffering or death. Some of these parents seek to make meaning of their experiences through advocacy efforts. In this article, we describe work that grew out of one family’s experiences, developing over time into a variety of supports. Key among these are efforts to educate other parents and pediatric providers about the family experience and the benefits of pediatric palliative care (PPC).

PPC has been defined as “specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family … [It] is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.”1  Not all palliative care is provided by specialists in the field. Pediatricians are key partners in supporting parents with the difficult choices they must make. Although the medical perspective is key to informing those choices, there are also crucial insights that can come only from the perspective of another parent who has gone through the experience of caring for their seriously ill child. These parents are an irreplaceable source of information and solace for families in this unfamiliar territory.

In this Advocacy Case Study, we describe the origins of the Lord family’s work to support and connect parents of seriously ill children and their health care providers, provide examples of available resources, and discuss lessons learned in the process of developing these resources. One author is a bereaved parent who contributed to and/or led much of the work described. The other authors are pediatricians who have collaborated in advocacy in this area, including the pediatrician who supported this family from diagnosis through their child’s end of life.

The advocacy work arose from the deaths of 2 children, first cousins, from a rare disease, infantile Tay-Sachs, and the family’s responses to such profound circumstances. After the children’s deaths a few months apart, Blyth and Charlie Lord sought to understand what helped them cope and find their agency as parents amid such heartbreak and sorrow. They recognized the critical role of their pediatrician as a guide, ally, listener, and advisor and decided that the care their daughter Cameron had received was a cause worth advocating for. As the Lords worked to make meaning of their experience and loss, they committed to raising awareness of PPC among families of seriously ill children and pediatric providers caring for these families. Their goal was to share the voices and insights of parents who could guide other parents confronting the difficulties of caring for a profoundly ill child. It was only later that the impact of those voices on clinicians became clear.

As a first step, the extended Lord family founded the Cameron and Hayden Lord Foundation to fund PPC research and program development. Separately, Charlie testified about palliative care with a coalition of parents and hospice providers who successfully advocated the Massachusetts State Legislature for a state-funded, community-based PPC network, now in its 19th year. Blyth and Charlie Lord and Dr Richard Goldstein began sharing their palliative care experience as a model for other family–provider partnerships, initially focusing on medical students and physicians in training at Harvard Medical School. After several years, the Lords and Dr Goldstein approached the American Academy of Pediatrics (AAP) National Center of Medical Home Initiatives for Children with Special Needs to produce an educational unit on palliative care for community-based pediatricians and pediatric residents, using Cameron’s story to highlight basic principles. With support from the Lord Foundation, Ms Lord (a career television producer) and independent filmmaker Elizabeth Arledge produced the video Cameron’s Arc: Creating a Full Life, and PPC providers and educators from the AAP wrote an accompanying teacher’s guide.2  This video tells the real-life story of how a primary care pediatrician supported a family from the point of diagnosis of an inevitably life-shortening condition, through anticipatory guidance and advance care planning to their child’s end of life. In 2006, Cameron’s Arc: Creating a Full Life was distributed to all US pediatric residency programs. The film and guide were sold through the AAP bookstore until 2020; the videos and the guide (updated in 2019 by Dr Goldstein) are now available at no cost through the AAP Point-of-Care portal “Pediatric Care Online.”2 

The team’s early advocacy efforts were also directed at the disease-specific group National Tay-Sachs and Allied Diseases Association, which distributed the video to all newly diagnosed families to illuminate the care that families might seek. Sessions to introduce and promote the value of palliative care to affected families have continued. “Finding your philosophy of care” is now part of the National Tay-Sachs and Allied Diseases Association vernacular.

These encouraging early experiences led to efforts to universalize palliative care awareness and education beyond disease-specific forums. One key initiative was the creation, in 2014, of the Courageous Parents Network (CPN), a national nonprofit with the mission to accompany, inform, and empower families caring for children with serious illness.3 

Like all parents, those of children with serious illness develop a concept of what being a “good parent” means to them.4  PPC recognizes and addresses the stresses they experience and supports their empowerment. It also supports family members as they celebrate and cope with the ups and downs of serious illness and, potentially, death. CPN supports parents by featuring families’ perspectives through videos, blogs, podcasts, and downloadable guides. These examples serve to affirm the parent experience and provide additional guidance as parents define their roles as informed decision-makers and advocates for their children. Both explicitly and implicitly, CPN promotes PPC: what it is and how it can help. The material available on the Web site is curated and vetted by a board that includes health care providers. Provider input lends credibility to both parents and other providers, and parent input into the content lends authenticity to the experience portrayed.

CPN does not advocate for palliative care politically or legislatively, yet its insistence on what is at stake and why PPC matters fuels such advocacy. To this end, CPN strives to be an effective partner with any and all who are working to improve the lives of patients and families through clinical care, research, and policy.

The AAP has played an instrumental role in recognizing the power of parents as teachers and advocates. In 2010, the Section of Hospice and Palliative Medicine invited 2 parents, one being Ms Lord, to join the executive committee. A decade later, the section continues to prioritize the voice of the parent advisors as key stakeholders. In contrast to the time when Cameron’s Arc: Creating a Full Life was produced, PPC is now a board-certified subspecialty represented in most major medical centers. However, the need to advocate for community-based palliative care remains. Most recently, the AAP collaborated with the Center to Advance Palliative Care and CPN to produce the Education in Quality Improvement for Pediatric Practice (EQIPP) course, “Talking About Serious Illness,”3  launched in December 2020.5  The course is designed to disseminate primary palliative care skills to any professional providing care for seriously ill children and their families during a time of extraordinary need.

The 13 videos in the EQIPP course feature 2 sets of parents in simulated but nonscripted conversation with 2 pediatricians. Four of the videos are of the parents speaking directly to camera, as themselves, about overcoming barriers to the conversation, how parents expect to have such conversations with their doctor, what they experience while having these conversations, and their expectations of their primary care pediatrician in these situations. Much of the power of the unit lies in the authenticity of these bereaved parents who have actual experience in caring for a seriously ill child.

CPN currently offers >500 professionally produced short videos and podcasts of parent and provider interviews, downloadable guides offering practical information on a variety of relevant subjects, and many live, streamed events. The goal is to provide families and providers with simple, honest, and direct insights into some of the most trying topics, interspersed with commentary from providers (Table 1). There are, as of this writing, 1285 registered family consumers of CPN materials and 1540 provider members. Registration is not required, however, to access resources, other than for the provider portal. The Web site registers 5000 unique visitors per month. CPN’s social media, which is always topic focused, presumably draws additional people every month.

TABLE 1

Topics Covered in Resources Related to the CPN

ResourceTopics Covered
Cameron’s Arc: Creating a Full Life2  Delivering the diagnosis; anticipatory guidance; care goals and values; and transitioning to end of life 
CPN3  The diagnosis; how palliative care helps; siblings; marriage; working with the medical team; heart transplant; the hospital; NICU; shifts in baseline; considering clinical trial; spinal-fusion surgery; feeding tubes; tracheostomy; spirituality; finding support; pregnancy after child loss; preparing for end of life; and bereavement 
EQIPP: Talking About Serious Illness5  Preparing for serious discussions with patients and families; conducting such discussions by using a structured plan; the family perspective; documenting discussions; team communication about family goals; and plan for next steps 
ResourceTopics Covered
Cameron’s Arc: Creating a Full Life2  Delivering the diagnosis; anticipatory guidance; care goals and values; and transitioning to end of life 
CPN3  The diagnosis; how palliative care helps; siblings; marriage; working with the medical team; heart transplant; the hospital; NICU; shifts in baseline; considering clinical trial; spinal-fusion surgery; feeding tubes; tracheostomy; spirituality; finding support; pregnancy after child loss; preparing for end of life; and bereavement 
EQIPP: Talking About Serious Illness5  Preparing for serious discussions with patients and families; conducting such discussions by using a structured plan; the family perspective; documenting discussions; team communication about family goals; and plan for next steps 

The guides and a set of curated, topic-specific educational experiences (“Pathways”) are also offered in Spanish. Additional Spanish-language videos and blog posts are being added. A diversity, equity and inclusion initiative will bring the voices of underrepresented families to the platform to explore and advocate, with intentionality, for the needs of all families of seriously ill children and the role that palliative care providers can play in addressing these needs.

The power of the family perspective quickly became apparent to pediatric providers, who report through CPN’s surveys that they use the parent videos and guides not only with families but, also, for self-education and for training colleagues. In response to this feedback, CPN’s professional advisory board (composed of medical providers, including physicians, a nurse, social worker, chaplain, and the program director for a community-based palliative care organization) recommended the creation of resources specifically for providers not trained in palliative care. CPN conducted an online survey and qualitative interviews to refine its concept and help identify content areas. The resulting provider portal, launched in 2019, offers an introduction to palliative care and sample scripts written by a PPC educator. Topics include delivering a diagnosis, introducing palliative care, supporting family relationships, advance care planning, and supporting families in bereavement. The provider portal also includes 5 training modules written by the residency directors at MassGeneral for Children and Cleveland Clinic Children’s Hospital, each built around CPN videos. In their introduction to the modules, the authors write: “Patients and families can be the best teachers, yet it is often challenging to create learning opportunities outside of clinical care to get families and clinical trainees together for teaching. By using the CPN videos, these modules allow educators to easily bring families into the learning environment to prompt reflection and discussion about difficult topics in pediatric care.” This content is actively promoted through CPN’s monthly newsletter to its provider community and through various listservs, including those of the AAP.

Over the past 5 years, Ms Lord and representatives of CPN have attested to the impact of palliative care to nearly 2000 families and providers nationwide, through in-person or virtual presentations at conferences, pediatric grand rounds, palliative care rounds, and national conferences, to families at disease-specific group events, and to the rare disease biotechnology industry, in which patient advocates are eager to connect research and clinical development with the patient experience. Online, ∼4000 users access CPN’s digital resources each month.

New resources are tested before their introduction, and CPN regularly reviews analytics (Google, MailChimp, event attendance, etc) to determine what works and what draws the greatest levels of interest. Gathering such data led to the evolution of a monthly newsletter format to focus on topics rather than news specific to CPN. Recent additions include live Zoom “in the room” programming and events, which are then archived. The provider portal scripts also arose from feedback received. A forthcoming mobile app has been tested with both parents and providers to ensure navigability and ease of use.

After previous research efforts, a 2020 survey of nearly 100 members of CPN’s provider community6  confirmed that physicians, nurses, nurse practitioners, social workers, and other providers continue to use CPN for self-education, as a resource for families, and in medical education; in fact, providers are the fastest-growing CPN constituency. CPN has also become a partner to specialists seeking to develop and distribute content for both parents and providers, on topics such as decision-making about spinal-fusion surgery, tracheostomy, pain management for children with severe neurologic impairment, and nutritional needs of children nearing tend of life.

This activity has had a notable ripple effect. CPN is an established means by which pediatric researchers have sought the involvement and input of parents in their palliative care research. Parents in the network express their eagerness to contribute to the body of knowledge about serious pediatric illness, the needs of families and how to help. Many bereaved parents see participation in education and research as a part of their responsibility to their child’s memory and find that honoring their child in this way is actively therapeutic.7 

Several of the families profiled in CPN resources have themselves begun to advocate for palliative care beyond the CPN platform in their respective communities, with encouragement from palliative care champions from CPN and the AAP.

Several important lessons were learned over the years in developing the resources we describe. Adaptation of approach and content are helping to bring the most benefit to families and the pediatric community.

For families, the credibility of a parent who has cared for a seriously ill child complements the technical expertise a pediatrician can provide. Parents seek out the voices of fellow parents, but many do not have immediate access to others’ voices, by virtue of their child’s rare diagnosis or because of where they live. Particularly when facing difficult decisions, shared experiences and strategies can normalize a full range of possible choices as being loving options. Parents can also feel tremendously isolated, and hearing about other families’ experiences can help them feel less alone in their struggles. Some families using CPN resources have also reported that bereaved parents’ stories gave them an example of coping after a child’s death.

In addition, there is therapeutic value with transformative effect in telling one’s story. Knowing that their digitized voices or published writing can be a powerful catalyst for learning is rewarding and affirming for families. Bereaved families report that giving to others in this way can be an important meaning-making activity.

Although CPN resources emphasize the value of a comfort-oriented approach that carefully evaluates medical interventions, the organization recognizes that such an approach may not be appropriate for every family. Clinical circumstances might differ, as could any family’s perspective on what is most important to them. Over time, it became apparent that it would be helpful to include a broad spectrum of family choices. CPN has therefore strived to represent diversity in the materials it presents. The current platform targets such diversity in family backgrounds, medical diagnoses, severity of illness, and choices. For example, families can hear from those who chose tracheostomy or spinal fusion or a feeding tube for their child, and from those that did not.

In discussing the power of stories, we should not underestimate the significance and value of story-based educational assets for the medical provider community. Trainees may gain clinical knowledge, insight into conversations and decision-making, and important perspectives on self-care and how to support families. Hearing in depth about a family’s experiences caring for a seriously ill child and making difficult decisions may also alleviate feelings of moral distress that clinicians can experience when they do not understand perspectives that might be different from their own. We learned that parents easily and eagerly understand that their voices are powerful tools in pediatric education and are highly motivated to contribute.

Primary palliative care education can be an important adjunct to advocating for specialty primary care. Through the steady efforts of palliative care leaders and the testimonies of families, palliative care, or a “palliative-aware” approach, is increasingly recognized as benefiting children being followed by generalists and many different specialties (eg, oncology, cardiology, complex care, critical care). There is also recognition that there will never be an adequate number of palliative care subspecialists to serve the tens of thousands of families that could benefit. In fact, many components of the palliative care skillset can be seen as core competencies for generalists and a wide range of specialists.8  This landscape compels the CPN team to advocate for education more broadly, in the hope of helping to build an extensive network of clinicians with primary palliative care skills.

Close collaboration between parents and health care providers was vital throughout this process as the extended team jointly advocated for the role of PPC. The parent–provider collaboration grew over time and is critical to describing, revealing, and modeling the essential practices of PPC (eg, improved communication and shared decision-making, as both parties have a vested interest in the experience and outcome). At its core, the care of a seriously ill child is a shared endeavor between the parent expert and the provider expert.

CPN was conceived as a solution to support families caring for seriously ill children. The initial response, from families easily reached by the network, validated that aspect of the concept. The model assumed that the network would grow as family and provider networks (eg, disease-specific patient and family groups) and providers introduced families to CPN. However, CPN’s first formal market research project, conducted nearly 3 years after launch, revealed something additional and unanticipated. Providers indicated that they most valued CPN resources for self- and colleague education. Many indicated that they also introduced families to CPN, but this was not their primary use of the platform. In a second round of research, conducted 2 years later, this result was confirmed.

Although the platform as it exists today might be similar to its current format (even if this primary utility to providers had been known from the beginning), resources might have been focused differently. Health care providers were included as advisors from the initial planning stages and valued for their content expertise. However, it was only over time that it became apparent that provider education could and should be a key part of the programs described. Early work in assessing stakeholder perspectives on any resources developed are likely essential to any advocacy work.

The journey of the Lord family, leading to the eventual development of the CPN, is an example of how the personal experiences of patients and their families can be transformed into advocacy for improved experiences for the patient, family and provider. The ongoing partnership between parents and pediatric providers capitalizes on the collective wisdom of experienced parents and clinicians. Together they bring expertise to families facing challenging situations, enhancing care with meaningful insights and trusted resources.

Ms Lord gratefully acknowledges all the parents and multidisciplinary professionals who collaborate to make all the work described here possible. In particular, PPC providers continue to be instrumental as generous mentors, encouraging her to give a voice to other parents. We thank CPN communications consultant Carol Trager for her editorial assistance.

Ms Lord and Dr Morrison conceived the article and began the first draft of the article; Drs Goldstein and Feudtner contributed to the initial advocacy efforts and early drafts; and all authors contributed to editing subsequent versions, approved the final manuscript as submitted, and agree to be accountable for all aspects of the work.

FUNDING: Dr Morrison’s time is supported by the Justin Michael Ingerman Endowed Chair for Palliative Care. Dr Feudtner’s time is supported by the Steven D. Handler Endowed Chair in Medical Ethics. There was no external funding for this project.

AAP

American Academy of Pediatrics

EQIPP

Education in Quality Improvement for Pediatric Practice

CPN

Courageous Parents Network

PPC

pediatric palliative care

1
Center to Advance Palliative Care
.
About palliative care
.
Available at: https://www.capc.org/about/palliative-care/. Accessed May 25, 2021
2
American Academy of Pediatrics
.
Cameron’s Arc: Creating a Full Life
.
3
Courageous Parents Network
.
Courageous Parents Network
.
Available at: https://courageousparentsnetwork.org/. Accessed April 20, 2021
4
Weaver
MS
,
Neumann
ML
,
Lord
B
,
Wiener
L
,
Lee
J
,
Hinds
PS
.
Honoring the good parent intentions of courageous parents: a thematic summary from a US-based national survey
.
Children (Basel)
.
2020
;
7
(
12
):
265
5
American Academy of Pediatrics
.
EQIPP: Talking About Serious Illness
.
Available at: https://shop.aap.org/eqipp-talking-about-serious-illness/. Accessed April 19, 2021
6
Courageous Parents Network
.
Findings from 2020 Survey of Pediatric Providers
.
7
Lord
B
.
Parent perspective and response to challenges and priorities for pediatric palliative care research
.
J Pain Symptom Manage
.
2019
;
58
(
5
):
e9
e10
8
Morrison
WE
,
Gauvin
F
,
Johnson
E
,
Hwang
J
.
Integrating palliative care into the ICU: from core competency to consultative expertise
.
Pediatr Crit Care Med
.
2018
;
19
(
8S
,
suppl 2
):
S86
S91

Competing Interests

POTENTIAL CONFLICT OF INTEREST: Ms Lord is founder of the nonprofit Courageous Parents Network (www.CourageousParentsNetwork.org) and cofounder of the Cameron and Hayden Lord Foundation, both discussed in the article. Dr Feudtner serves on the advisory board for the Courageous Parents Network and served on the Executive Committee of the Section of Hospice and Palliative Medicine of the American Academy of Pediatrics. Drs Morrison and Goldstein have no conflicts of interest relevant to this article to disclose.

FINANCIAL DISCLOSURE: Ms Lord is founder of the nonprofit Courageous Parents Network (www.CourageousParentsNetwork.org) and cofounder of the Cameron and Hayden Lord Foundation, both discussed in the article. Dr Feudtner serves on the advisory board for the Courageous Parents Network and served on the Executive Committee of the Section of Hospice and Palliative Medicine of the American Academy of Pediatrics. Drs Morrison and Goldstein have no conflicts of interest relevant to this article to disclose.