CARING AND PREPARING: The goal for pediatric palliative care is to allow a child to grow, develop and/or enjoy childhood in the face of serious illness. It focuses on the symptoms that inevitably arise from chronic, serious illness, such as pain, difficulty sleeping, fatigue, nausea, constipation, depression or stress, and seeks to relieve those symptoms so that a child can be a kid and a family can be a family.
BY CARA L. COLEMAN
QUALITY OF LIFE & END OF LIFE CONVERSATIONS
Parenting a child with special healthcare needs and disabilities, as with any child, is filled with joys and challenges. It requires that we navigate across multiple systems of care, while ordering medications and supplies, providing medical care and balancing and making schedules all before noon each day. Superhuman status!
However, there are times in the journey when that superhuman strength may not feel sufficient in situations when tough questions must be asked, conversations raise stress levels, and none of us are quite sure what to say or do. Defining, discussing and striving for quality of life for children with special needs and disabilities begins when they are first born, and takes shape, twisting and turning, depending on where and with whom the discussion occurs. When children have serious, life-limiting illness, most of us think about quality of life and end of life, but struggle to discuss, plan and express our wishes. There are many resources available to help parents, children with serious, chron ic and/or life-threatening medical conditions, family, friends and providers to ask difficult questions, embrace conversations, and plan for quality of life.
About 15 months before my daughter Justice Hope passed away, her father and I noticed changes and decline that were different than we had ever seen before. Our instincts kicked in and we began to talk. Many of the conversations we had were ones we had touched upon over the years to ensure Justice achieved "a life like yours," but some were different; scary, sad and painful. Most pressing, however, was to get support for the symptoms that were taking over Justice's life. Our experiences supporting Justice's symptoms so she had the strength to be a kid each day, and supporting Justice to have a "good death," varied tremendously and were filled with both challenge and hope alike.
Prior to connecting you to information, tools and resources, I want to share what we found to be most important. Most parents have heard "you know your child best" and "trust your mom/dad gut." Mom and dad gut are real, powerful and invaluable. Sometimes that is what gives us our superhuman status, and other times it is said and then immediately doubted – either by ourselves (with, for example, the self-doubt that can come when faced with difficult decisions) or by others (providers, family, friends) who may not know how to value, or even understand, shared decisionmaking and patient and family centered care. Listen to your child in the myriad of ways that you know how, trust your gut, and have many conversations so that your child and family can focus on what matters and enjoy time together.
WHAT IS THE DIFFERENCE BETWEEN PALLIATIVE AND HOSPICE CARE?
Getting to the difficult questions and conversations is not only challenging because of highly-charged emotions that may accompany untreated pain, symptom management, end of life and quality of life, but because of common misunderstanding of options, resources and supports.
WHAT IS PALLIATIVE CARE?
The goal for pediatric palliative care is to allow a child to grow, develop and/or enjoy childhood in the face of serious illness. It focuses on the symptoms that inevitably arise from chronic, serious illness, such as pain, difficulty sleeping, fatigue, nausea, constipation, depression or stress, and seeks to relieve those symptoms so that a child can be a kid and a family can be a family. This family-centered approach not only regards and cares for the child as a whole, but supports the well-being of the entire family as well. Palliative care is an added layer of support provided along side other medical "curative" care; a balance between curative medical treatments and comfort/ quality of life. Additionally, palliative care teams can often foster communication and coordination amongst multiple providers in a way that is can feel miraculous to all in an increasingly fragmented and overwhelmed system.
Here are some links to reading about palliative care and its benefits for the child and family: getpalliativecare.org/whatis/pediatric palliativedoctors.org/start/child Although this page is designed to outline what to expect at, and how to prepare for, a first palliative visit, it can be helpful in further understanding how palliative care might support the needs of a child: palliativedoctors.org/start
WHAT IS HOSPICE CARE?
Hospice care supports the needs of children when treatments to slow or stop an illness are hurting more than helping, or are no longer working. Hospice involves a shift in focus from cure to comfort and quality of life; when the balance of burden/ symptoms from treatment may outweigh the benefits. Hospice is not about "giving up" but rather supports children and families to ensure that final days/months are good, lived well and focused on what matters to them. It may be important to note that if a child enters hospice and their illness improves, they can leave hospice care.
To better understand what hospice is, what care it provides, and how to think of it in terms of your child's care, visit: palliativedoctors.org/hospice/care This link provides a visual chart comparing the differences between palliative and hospice care in terms of services, location of care, team and other FAQs: caringinfo.org/i4a/pages/index.cfm?pageid=3355
If reading about and connecting to other people with similar experiences assists in understanding, thinking about, navigating this difficult journey or providing hope, here are links to stories from families around the country who have found support and relief in palliative and hospice care.
Stories for understanding and connection in palliative and hospice care: palliativedoctors.org/stories Being Mortal by Atul Gawande is a wonderful read mixing stories with evidence, history and thoughtful analysis and reflection. For information about the book, or to watch a Frontline series with key highlights from the book (click on the media tab) visit: atulgawande.com/book/being-mortal
CONVERSATIONS
Unfortunately, there is no easy, single or definitive way to start having difficult conversations about quality of life and end of life wishes. How to start "the conversation" may depend on communication styles, the audience, or what you want to accomplish in the conversation. The conversation does not have to happen in one sitting and run through a checklist until all questions are answered and "the plan" is complete. The most important thing is to move from thinking about what matters and end of life wishes, to talking about them—and then continuing to talk often, with important people in the child's life, and not just at the very end of life.
WITH YOUR CHILD
Most parents worry that having end of life conversations will only upset their children; hurting, rather than helping them as they struggle to face their illness. Thankfully, stories from families and research show us that this is not usually the case. As stated above, trust your mom/dad gut. You know your child better than anyone else.
Similarly, trust your child. It is likely that they are thinking about end of life and have thoughts about what matters. It is important to note that these statements are also true if your child is "non-verbal." The methods of communication that your family and loved ones have developed with your child over the years can inform and guide identification of symptoms, whether those symptoms are relieved, what matters to your child/ quality of life and end of life discussions. Although the following tools may require adaptation, they can provide ideas, tips and help to begin conversations.
WHAT REALLY MATTERS: Hospice is not about "giving up" but rather supports children and families to ensure that final days/months are good, lived well and focused on what matters to them. It may be important to note that if a child enters hospice and their illness improves, they can leave hospice care.
The Pediatric Starter Kit by the Conversation Project of the Institute for Healthcare Improvement offers very tangible, thoughtful and heartfelt ways (informed by and infused with real life experiences and insights from families) to begin to think about whether to have the conversation, how to organize thoughts and emotions to be able to start the conversation, and how to continue to have it with a seriously ill child. The Pediatric Starter kit is available in Chinese, English and Spanish. theconversationproject.org/starter-kits/#pediatric-starter-kit
Available in both English and Spanish, this guide for talking to a child about their illness and treatment by the National Hospice and Palliative Care Organization focuses on hope, resilience and fostering positive feelings in children to help them cope with illness. The brochure includes age-appropriate tips for communication, as well as meaningful ways to build love, courage and strength in the face of tremendous challenge. caringinfo.org/files/public/brochures/Talking_with_Your_Child_about_His_or_Her_Illness.pdf
Once parents have begun to have the conversation with a child, they may be in search of tools to help the child discover and express what matters to them in their own voice. Five Wishes can help children and families alike to think about, talk about and document thoughts, feeling and wishes about end of life. My Choices and My Wishes are developmentally appropriate guides for adolescents and young adults and younger children, respectively. fivewishes.org/five-wishes/individuals-and-families/children-and-adolescents
WITH A CHILD'S PROVIDERS
Having discussions about the "quality of life" of a child with special needs and disabilities is quite common and often happens across many systems (health, education, social) and with all types of people and providers. Familiarity may help a family feel comfortable to bring up end of life wishes with a child's provider, but on the other hand, discussions about priorities, goals for care and quality of life may typically be led by others and thus feel overwhelming to initiate and lead on your own. It is normal to feel nervous, unsure and emotional.
This document provides a digestible list of 10 tips of how to organize thoughts, what to "report" or share during the visit, and how to develop questions for a doctor's appointment to discuss the child's serious medical condition. It also offers encouragement to ensure a family receives the information they seek and feel heard in the appointment: caringinfo.org/files/public/brochures/Taking_With_Your_Child_s_Doctor.pdf
This toolkit reads almost like a map for how to think about, organize and walk through a conversation with a child's physician about end of life wishes. It is available in Chinese, English, French, Korean and Spanish: theconversationproject.org/wp-content/uploads/2017/02/ConversationProject- TalkToYourDr-English.pdf
ADVANCE DIRECTIVES
Another tool that may raise questions and foster conversations with a child and/or their providers are advance directives. Additionally, just as it is important to begin discussing end of life wishes, it is also important to document those wishes so they can be respected in times of crisis.
This link provides opportunities to read about types of directives, a glossary of terms, and a means to download advance directive specific to your state: caringinfo.org/i4a/pages/index.cfm?pageid=3289
WITH SIBLINGS, FAMILY AND FRIENDS
Once parents have had conversations with their child and their providers, it may be time to turn the conversations to the siblings, other family members and friends. Because palliative and hospice care teams include social workers, chaplains, counselors and others supportive staff, there are often a myriad of ways in which they can provide support (including with grief and loss) to the child, her/his siblings, and the whole family.
Siblings: The following resources from the American Academy of Pediatrics can assist, not only in having conversations with siblings of chronically ill children, but in fostering resilience, courage and hope that will assist with the well-being of that sibling and the entire family through tough times and beyond. healthychildren.org/English/health-issues/conditions/chronic/Pages Siblings-of-Children-with-Chronic-Ilnesses.aspx healthychildren.org/English/healthy-living/emotional-wellness/Building- Resilience/Pages/When-Things-Arent-Perfect-Caring-for-Yourself-Your-Children.aspx
Family and friends: It is hard to know what to say and do, while a child is dying or once they have died. This brochure provides insights and guidance that is meaningful and actually rings true in both situations. caringinfo.org/files/public/brochures/When_A_Child_Dies.pdf
HOW TO FIND PALLIATIVE AND HOSPICE CARE PROVIDERS
Perhaps the trusted physician with whom families initiate the conversation will connect the child to the appropriate palliative and hospice resources, but there are other resources available.•
If the familiy physician canot connect the child to the approriate resources, the following are directories for locating palliative and hospice providers: getpalliativecare.org/howtoget/find-a-palliative-care-team nhpco.org/resources/choosing-hospice
ABOUT THE AUTHOR: Cara L. Coleman is a wife, a mom, an attorney, a consultant with Family Voices National, a Family and Professional Partnership Specialist at the Institute for Patient and Family Centered Care, an Instructor of Pediatrics at VCU Medical School INOVA Campus and the author of I am Justice, Hear Me Roar about one of her daughters, Justice Hope, who passed away last year.