बाल चिकित्सा प्रशामक देखभाल
Pediatric palliative care supports children with life-limiting or life-threatening conditions and the families who care for them. It focuses on comfort, quality of life, and compassionate support at every stage. NSHPCA is committed to sharing trusted information and connecting families and professionals to resources that help ensure children are cared for with dignity and understanding.
Understanding Pediatric Palliative Care
The principles of pediatric palliative care are rooted in the provision of high-quality holistic care in the face of life-limiting conditions. Neonates, Infants, Children and Youth experience a variety of illnesses and conditions that are not seen in adults. Certain illnesses that are also seen in adults can display differently in the pediatric population because of their unique anatomy and physiology. Children are also continuously growing and developing in the face of illness. The developmental range that we may see in pediatric palliative care can be anywhere from unborn babies with concerning antenatal diagnoses/abnormalities to infants, children and youth living with serious illnesses or medical complexities that will shorten their lives.
Pediatric Advance Care Teams Across Nova Scotia (PACT)
Pediatric Advanced Care Teams (PACT) focus on the prevention and relief of symptoms. The team provides an additional layer of family-centered supports throughout the illness experience, whether on to a cure or into bereavement. PACT works alongside primary health care teams and community providers to:
- Enhance quality of life
- Ensure continuity of care
- Support children and their families to make and advocate for care decisions that best reflect their unique values and preferences
The IWK Health Centre Pediatric Advanced Care Team is a consultative service dedicated to optimizing the wellbeing of infants, children, youth and expectant parents in the Maritimes who are facing life limiting or life-threatening conditions. As the Division of Palliative Medicine at IWK, PACT is also involved in research, education, policy and advocacy. Our goal is to provide the highest quality, evidence-based pediatric advanced care, complex care and palliative care to children in the Maritimes and their families.
The Cape Breton Regional Hospital, as a part of Nova Scotia Health located in Sydney offers a Pediatric Advanced Care Team serving infants, children, youth and families located in Cape Breton. This is a consultative service dedicated to optimizing the well-being of those living with life-limiting or life-threatening conditions.
अग्रिम देखभाल योजना
In pediatrics, Advance Care Planning (ACP) models helps you make informed decisions with your child and chosen family about future healthcare based on your values, goals, cultural traditions and beliefs, and relationships. In pediatrics, like adulthood, care planning is based on each client and family’s unique values, beliefs, needs, hopes and goals for the future. What is important differs for each child and family. Having a plan can help with anxiety, stress, and fears for the future.
जीवन के अंतिम क्षणों में देखभाल के विकल्प
When an illness or disease is no longer treatable, the caring journey shifts to end-of-life. These conversations include focus on what matters most – comfort, dignity, and continuous support for your child and those important to them. Family-centered care ensures communication and coordination of care at end-of-life respects your families goals, values, cultural traditions, and ceremonies that may bring meaning and peace to this time.
At Home
Many families & children prefer to remain at home during the final stages of their illness. This allows for less stress related to the hospital setting and multiple different care teams in the child’s life.
Supports are put in place by the pediatric palliative care team to ensure symptom management, emotional and spiritual care, as well as guidance for your chosen support people. Care is provided by a combination of primary care providers such as family physicians, pediatricians or nurse practitioners, home care services, community-based palliative consult teams, and may include programs such as the Special Patient Program delivered by EHS. Family caregivers and personal supports play an essential role in providing day-to-day care and emotional support, working alongside healthcare professionals to ensure comfort and dignity at home. This approach helps maintain autonomy while reducing unnecessary hospital visits.
Hospice There are currently no pediatric Hospice facilities in the Atlantic Provinces.
Hospital Settings
Many hospitals with pediatric units are able to provide palliative care for patients. The vast amount of non-emergency deaths within the perinatal or pediatric population take place at the IWK Health Centre or the Cape Breton Regional Hospital. Care focuses on symptom management, emotional support, and aligning treatment with your goals and values while your infant, child or youth remains in a hospital setting. Some hospitals have rooms that have been decorated and are supported by local Hospice/Palliative Care Societies, or local charities to make them more comfortable.
Where available, PACT will support the delivery of care.
Designated Pediatric Palliative Care Unit
There are currently no pediatric palliative care units in Nova Scotia.
Long-Term Care & Respite Facilities In Nova Scotia, there are two facilities that support long-term care and respite for children and youth living with medical complexities and serious illness. The ability to access this care, as well as the amount and type of respite services, may be limited by the criteria and resources of each organization.
Evergreen Home for Special Care in Kentville has a Children’s Centre that consists of a twenty bed facility which specializes in the care of children with physical and development challenges as well as children with high medical needs. It offers both full time and respite care. Taigh Gradhach House in Sydney is a 8 bed facility which specializes in the care of children with physical and development challenges as well as children with high medical needs. It offers both full time and respite care.
Talking to Kids About Serious Illness – The 6 C’s and 3 W’s.(SickKids, PACT, Project ECHO, 2021).
The 6 Cs are common concerns and questions that children have when they or someone they careabout has a serious illness. Download the this brochure to learn more.
Talking to Kids About Serious Illness
What are the Six C's and 3 W's?
The 6 Cs and 3 W’s are common concerns and questions that children have when they or someone they care about has a serious illness. Download brochure to learn more.
The 6 C's
1
What is it Called?
It is important to name the condition, illness, or event that is causing the serious illness. Naming the condition allows for greater understanding and an opportunity for kids to ask questions. Providing children and youth with information that is honest, timely, and appropriate to their age and stage of development can help them build trust and feel better able to cope with the situation.
2
Can I Catch it?
Most children are familiar with colds and flu – which they know they can “catch”. If your child is sick with an illness that isn’t contagious, reassure other children that they can’t catch it or spread it. It is also important to share this information directly with your child that is ill, as they might worry about getting people around them sick
3
Did I Cause it?
Most children are familiar with colds and flu – which they know they can “catch”. If your child is sick with an illness that isn’t contagious, reassure other children that they can’t catch it or spread it. It is also important to share this information directly with your child that is ill, as they might worry about getting people around them sick
4
Can I Cure it?
Children often feel that it is part of their job to make things better. An ill child might think that they aren’t trying hard enough to make themselves better if the treatment isn’t working. Reassure them that their team are trying their best to help. Ensure that kids know that they can be helpful but that it is not their responsibility to make it all better.
5
Who will take Care of me?
When a child is ill, they often worry about who will take care of them and their family. An ill child might worry that at some point they may become too sick to be cared for. Reassure your children that they’ll always be looked after. Help your children identify adults who care about them and will help support them through this time.
6
How do I Connect with people who care about me?
When a child is ill, they often worry about who will take care of them and their family. An ill child might worry that at some point they may become too sick to be cared for. Reassure your children that they’ll always be looked after. Help your children identify adults who care about them and will help support them through this time.
मिथकों का भंडाफोड़
Myth: Children must be end-of-life to receive palliative care.
PACT is for children with a potentially life limiting illness. It does include end of life care, however it is best commenced at the time of diagnosis to establish a therapeutic relationship and maximize quality of life by providing support throughout the illness.
Myth: Palliative care is only for children that are diagnosed with cancer.
There are many different diagnostic groups who could benefit from a PACT referral.
Myth:Palliative care can not be provided alongside active curative interventions.
PACT can be offered throughout a child’s illness, even if the intent of care remains cure focused.
PACT transitions children to adult services, or discharges them based on their treatments and needs.
Myth: A child will die sooner if they are referred to pact as all hope is lost.
PACT aims to improve quality of life by assessing and managing common issues, such as sleep disturbance, pain and fatigue.
PACT and hope are not mutually exclusive.
Myth: Children don’t understand death, so they don’t need palliative care support.
Children understand illness and loss differently at different developmental stages — but they absolutely experience fear, anxiety, physical suffering and emotional distress. Pediatric palliative care supports developmentally appropriate conversations and coping.
Myth: It’s better not to talk to children about serious illness.
Avoiding honest conversations often increases anxiety. Children can sense when something is wrong. They may often imagine worse scenarios when not informed. Children and youth benefit from clear, gentle, developmentally appropriate communication. PACT helps families navigate these conversations safely.
भ्रम: उपशामक देखभाल, धर्मशाला या जीवन के अंतिम चरण की देखभाल के समान है।
Hospice/end-of-life care is one part of palliative care, but palliative care is broader and addresses comfort and quality of life long before the final days.
Myth: Palliative care means stopping all medications.
Children continue to receive medications and treatments that provide benefit or comfort; only burdensome or unnecessary interventions may be discontinued.
मिथक: उपशामक देखभाल केवल दर्द प्रबंधन के बारे में है।
Pediatric palliative care also addresses the emotional, social, spiritual, and psychological needs of the family.
मिथक: उपशामक देखभाल प्रदान करने का अर्थ है कि स्वास्थ्य सेवा टीम 'हार मान रही है'।
It represents a shift in focus toward improving quality of life, comfort, and meaningful living.
Myth: Children will become ‘addicted’ to pain medications.
When opioids are used appropriately for symptom management, addiction is extremely unlikely.
मिथक: उपशामक देखभाल केवल वृद्ध वयस्कों के लिए है।
वास्तविकता: उपशामक देखभाल उम्र पर नहीं, बल्कि जरूरतों पर आधारित होती है।
संसाधन
Families / Caregivers
CaringTogether.life
CaringTogether.life is a free platform designed to educate, support, and empower parents caring for a seriously ill child and those who are experiencing pregnancy or infant loss. Caring Together – Home.
Me And My Illness Activity Book
Me And My Illness Activity Book is a free printable book that allows children to make sense of their illness and the changes they are experiencing. This booklet helps children navigate their feelings and emotions as they learn about their diagnosis and care plan. Me and My Illness.
My Life Their Illness Activity Book
My Life Their Illness Activity Book is a free printable book that allows children to make sense of someone else’s illness and how it affects their own life and emotions. My Life, Their Illness.
Together For Short Lives
Together For Short Lives is a European website that offers families living with a serious illness diagnoses an opportunity for sharing, networking & learning. They also host resources & research for Pediatric Palliative Care Professionals. Information on palliative care, policy & consultations can be found here. About Us – Together for Short Lives.
Courageous Parents Network
Courageous Parents Network works to empower families and others caring for a child with a serious medical condition. They provide education and advocacy for children and families as well as education and policy change for those working with these families and caregivers. Courageous Parents Network – Courageous Parents Network.
Bereaved Families of Ontario
Bereaved Families of Ontario provides a safe, non-judgmental environment for you to discuss your experiences and learn about grief with others who have been there. Visit their resource site here.
दु: ख
Canadian Alliance For Children’s Grief
The Canadian Alliance For Children’s Grief is the first Canadian national group of professionals working together to ensure the accessibility of bereavement support and information to grieving children and their families. Supporting Children and Youth Grieving.
KidsGrief.ca
KidsGrief.ca offers support for parents and caregivers as well as for educators who are supporting children through their grief journeys. Kids Grief.
YouthGrief.ca
YouthGrief.ca is created for grieving youth, by grieving youth. Sharing wisdom, experiences and advice from young people who have experienced grief and know what it is like to grieve when someone they care about has died. Youth Grief.
Dougy Center
The Dougy Center offers support, connection and resources for before and after death. There are resources specific to kids, teens, young adults, parents & caregivers, living with advanced illness and for those supporting grievers. The Dougy Center for Grieving Children & Families.
Seasons Centre For Grieving Children
Seasons Centre For Grieving Children offers peer to peer support for children between the ages of 5 and 24 years, and their caregivers who are grieving the death of an immediate family member. They also offer workshops & seminars for professionals and community members supporting youth who are grieving. Seasons Centre for Grieving Children.