As Kathy Hull (founder George Mark Children's House, the first freestanding pediatric palliative care facility in the United States) says in her TED Talk, we need to “talk about the elephant in the room”—palliative care needs in children.
Very few people want to talk about death [and incurable illness], and even fewer about children's death [and incurable illness]... children don't stop dying [or getting sick] just because we the adults can't comprehend the injustice of losing them [or watching them suffer]. And what's more, if we can be brave enough to face the possibility of death [and incurable illness], even among the most innocent, we gain an unparalleled kind of wisdom.
Hull goes on to talk about the “‘George Mark bump,’ a lovely, not uncommon phenomenon where children outlive the prognoses of their illnesses if they’re outside of the hospital. The calmer atmosphere of [the] surroundings, tasty meals that [are] fixed, often to accommodate requests, the resident pets, the therapy dog and rabbit spen[d] lots of cozy time with [patients].” Hull states “children's respite and hospice care is a critical component missing from our healthcare landscape” and that “the transition from cure to care remains a challenging one for many hospital physicians whose training has really been about saving lives, not about gently guiding the patient to the end of life” or living well with their illness.
She explains the “complex medical diagnoses that bring young patients to [the house means] their lives have often been restricted, some to a hospital bed for long periods of time, others to wheelchairs, still others to intensive courses of chemotherapy or rehab.” We “make a practice of ignoring those limitations. Our default answer is ‘yes’ and our default question is, ‘why not?’”
And so, with inspiration from Hull’s words and life’s work let’s consider how we might support children with palliative needs living well every day and continue to incorporate joy, imagination and play. There are overlaps in child and adult palliative care, and to learn more about the difference between palliative and hospice care (a component of palliative care) you can visit our previous post here.
What Is Pediatric Palliative Care?
The International Children’s Palliative Care Network (ICPCN) shares a working definition of Children’s palliative care as “an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on enhancement of quality of life for the child and support for the whole family and includes the management of distressing symptoms, provision of respite and care from diagnosis through death and bereavement.”
‘Whole person care’ is integral to caring for children (or anyone) with palliative needs. This kind of indispensable care pays attention to:
- Body, mind, heart (emotional) and soul (spiritual)
- Long-term palliative care needs
- Focus on quality of life
- Ensuring every day is the best day it can be
- Care does not stop at patient and extends to family around the patient
As part of pediatric palliative care the acknowledgement of mortality is an important consideration when treating children with palliative needs. It’s natural to want to protect your “child by not telling them about [their illness]. But children usually know that something is wrong. Experts agree that even children as young as 3 or 4 years old should be told the truth according to their level of understanding” and it’s important to talk to them about their diagnosis, and if/when the time comes, about their death.
Palliative care, and especially pediatric palliative care, is under-utilized in Canada and physicians aren’t as well prepared for paediatric palliative care since most are connected to death and dying in the adult world. According to the Canadian Hospice Palliative Care Association’s fact sheet “21 million children around the world need palliative care, with approximately 8 million [requiring] specialized palliative care.” In Canada, the “number of children who received specialized pediatric palliative care more than quadrupled between 2002 and 2012,” and only “51% of the children who died in 2012 received these services [and] only the for the last 30 days of their lives.”
It’s important to note again, palliative care doesn’t mean the patient is dying. It’s about helping people live well with their illness, and by accessing palliative care services early it can have a significant impact on quality of life, and often meaning for children, access to more joy, imagination and play.
The National Cancer Institute found that “patients who received palliative care, along with standard treatment for advanced cancer, reported having a better quality of life and mood than patients who did not receive early palliative care,” and “patients who received early palliative care also scored better on an assessment of their ability to cope with their disease and were more likely to discuss end-of-life care preferences with their healthcare team.” What’s more, pediatric palliative care is family-centered, meaning the whole family benefits and is supported throughout the process.
Integrating Pediatric Palliative Care Into Everyday Life
There are several supports that exist for children with palliative needs and their families, one of which is the Quality of Life & Advanced Care (QoLA Care) at McMaster Children’s Hospital. They serve families affected by serious pediatric health conditions which impact quality of life tailored to the needs of the patient.
Care may include:
- Promotion and facilitation of factors which add to quality of life
- Anticipation, early recognition, and treatment of factors which detract from quality of life, including physical, psychological, emotional, and spiritual suffering
- Specific treatment of advanced pain and symptoms
- Aid for families in identifying family-centered, values-based goals of care, including the creation of advance care plans or birth plans to communicate these goals across the health care system.
- Support in the coordination and delivery of advanced care interventions in the home when indicated and consistent with goals of care
- Support for families in decision-making, planning, and comfort care at end-of-life, including emotional support, facilitating family wishes for location of death (home, hospital, hospice), legacy creation, Child Life sibling support, and after-death arrangements.
- Bereavement support and follow up for families following the loss of a child for the purposes
Lean on your child’s healthcare team and remember that as a parent no one knows your child like you do, so you’re an integral part of your child’s care team. “You can help your child feel comfortable with the healthcare team and help the… team get to know your child. You can help by sharing how your child is coping and talking about any side effects, worries or problems they may be having. You can also help with keeping communication open between all members of the healthcare team.” Like raising a child, it takes a village, and especially when a child has palliative needs it’s imperative to have a support team around you—treating illness takes teamwork.
When the time comes there may be a need for Hospice at Home, which the ICPNC identifies as “a service which brings skilled, practical children’s palliative care into the home environment. It works in partnership with parents and families and provides hands-on expert nursing care, on up to a 24-hour basis, along with other elements of palliative care” including:
- Emotional, psychological and social support, counselling, and spiritual care
- Access to specialist colleagues in other disciplines, such as physiotherapy, as required
- Provision of information, support, education and training where needed to all carers both lay and professional
- Close collaboration and communication with the primary care team, the child’s acute hospital specialists if appropriate, and other agencies
- Specialist respite care
- 24hr end of life care
- Bereavement support
- Hospices: “non-profit community based services that provide practical, respite and home hospice care for people living with life limiting illnesses. Services support children who are being cared for in their homes, as well as, parents and siblings. Services may include: home visitors, caregiver relief, transportation, meal preparation, therapeutic programs (e.g. art therapy), emotional/spiritual support, bereavement/friendly visits and bereavement support groups.”
- Children may go to a residential hospice for respite care or for end-of-life care
- Emily’s House (Toronto)—this video describes their hospice services
- Darling Home for Kids (Milton)
- Roger Neilson House (Ottawa)
- Wish Foundations providing “children with life-threatening illnesses the opportunity to realize their most heartfelt wish, giving them the strength to endure their treatments and build resilience.”
- Nursing and Respite Services
- Nursing services at home are provided through the Community Care Access Centres (CCACs). Nursing support can look very different depending on the needs of the child. A CCAC coordinator will do an assessment of the child to determine what nursing support the child needs at home.
- Financial and Government Resources
We Can’t Change The Outcome, So Let’s Change the Process
Imagination, joy and play have a significant role and the value “in the provision of palliative care for children with chronic, life-threatening and life-limiting conditions.” Providing “appropriate equipment, sufficient time and relevant play opportunities not only improves the very sick child’s psychological wellbeing, but also allows the child to cast aside the confines and restrictions imposed upon them by their illness and for a few golden moments to be nothing more than a child at play.”
Caring for a child with an incurable disease can be overwhelming and the grief of losing a child is a lifelong experience. While palliative care doesn’t cure the disease it will support the child (and their caregivers) to live well with the disease. Hospice care provides support at the end of life and palliative care supports living well at any stage of the illness, while also supporting patients and families as everyone navigates the complex, often heartbreaking, and sometimes even beautiful, complexities of this type of care.
And as Hull says,
Ultimately life is too short, whether we live to be 85 years or just eight. Trust me… It's not by pretending that death doesn't exist that we keep the people, especially the little people that we love, safe. In the end, we can't control how long any of us lives. What we can control is how we spend our days, the spaces we create, the meaning and joy that we make. We cannot change the outcome, but we can change the journey. Isn't it time to recognize that children deserve nothing less than our most uncompromising bravery and our wildest imagination.
Ensuring you have a palliative care team in place early in diagnosis ultimately allows the child more joy, imagination and play—a right for all children, no matter their circumstances.
We’re here to support you and have made it our mission to unpack difficult conversations around end-of-life planning and navigating the complexities of death care.
Visit www.eirene.ca to learn more.