The word “palliative” means soothing, calming and pain relieving. When used in the management of any life limiting or life threatening disease management, palliative care is about comfort and is to improve quality of life for both the patient and the family. Palliative care is focused on providing relief from the symptoms and stress of the disease. It comprises of a medical care team including doctors, pain management specialists, nurses, social workers, and therapists helps prevent and relieve pain and suffering while also easing stress, anxiety, and the fear associated with serious illness like Epidermolysis Bullosa (EB).
Palliative care is not to be confused with end-of-life care or hospice care. The goal of palliative care is to enhance the quality of life for a child and family during a serious illness, they do so by working together with your primary doctor. The palliative care team provides an extra layer of support through; expert treatment of symptoms, including stress, communication and guidance for difficult and complex treatment choices, close communication and coordination with all other doctors and medical teams and support for the family and the siblings.
Family members especially parents caring for EB face many challenges, and palliative care programs can help with some of these. Parents and other caregivers also play an important role in a child’s health. Parents know their child better than anyone else, so they are a partner with the palliative care team. They all have the same goal providing the best care for their child.
Domains in Integration of Palliative care
- Symptom Management
- Coordination of care with multidisciplinary teams
- Parental and siblings support
- Advance Care Planning
- Support to the parents and siblings in grief and bereavement
Symptoms specific to EB are pain, itching, eye infection and inflammation, oral mucosal injuries, wounds and skin infections. Detail for their management is given in above respective sections.
Coordination of care with multidisciplinary teams
Care coordination includes an access to and coordination among skilled competent care providers. This coordination helps in delivering reliable information to the families, helps them in decision making and enable them to be aware of the multidisciplinary services like psychology, nutritionist, geneticist, dermatologist and child life specialist, and make effective use of all them in order to improve the quality of life of their child. Care for children with EB includes an incorporation of a long-term plan for their growth and development as well. In circumstances of acute or terminal illness, families need support of sub-specialist palliative care physician to facilitate care plans at home or in the hospital.
Parental and Siblings support
Involvement of parents and siblings in support group has been able to help and understand what’s happening with their child. Families acknowledged that professionals who are available for assistance but listening from a parent about the journey of their child has been helpful for them. Resources like custom-made handbook on caring for a child with EB, and the personal education on wound care has been very supportive, this education about their child illness has made them the expert of the disease, and this empowered them in the care for their child and enabled them to take charge of the situation.
Advance Care Planning
The discussion about the advance directives with the parents/families and the healthcare providers give family an opportunity to set out wishes for their child regarding resuscitation or need for ventilation or maintenance of life support system. Completion of anticipatory directives should be encouraged because approaching the family openly and sensitively decreases the distress and help in delivering the desired and appropriate care. The participation in the care of a child facilitates the adjustment to the death of their child; it increases the parents’ sense of control and it decreases the feelings of helplessness.
Support to the Parents and Sibling in Grief and Bereavement
Grief is unique to every individual and relationship. Bereavement can cause one to feel irrational, despairing, relieved, sorrowful, hopeful, angry, inexplicably joyful, and vulnerable. People grieve in different ways that are influenced by their culture, age, role, gender, socioeconomic condition, religions and personal history. Care of a child with EB requires an extraordinary care by family members in cooperation with health care professionals, who can seem like a second family to those who rely on them for professional guidance and consultation in terms of individual meetings with the health care providers; palliative care physician or a support group meeting with other parents who have lived the same journey. Bereavement care begins to move the family and the specialized health care team to a time when the family will receive most support and care even from those outside the health care system that is from their extended family, faith community, and community services. A good support network among parents is always for ongoing for ongoing family support