Palliative Care for Children

• Palliative care uses an interprofessional approach for children with chronic, complex, or life-limiting conditions.
• The focus is on symptom control, supportive care, enhancing quality of life instead of seeking a cure when a cure isn't possible.
• The goal is to achieve the best possible quality of life for both patients and their families.

World Health Organization (WHO) Definition:

• Palliative care actively addresses the child’s physical, mental, and spiritual needs while supporting the family.
• It starts at diagnosis and continues alongside or regardless of disease-directed treatments.
• Healthcare providers need to assess and relieve the child’s physical, psychological, and social suffering.
• Effective palliative care involves an interprofessional approach, integrating family and community resources, and can be successful with limited resources.
• It can be provided in hospitals, community health centers, and homes.

Palliative Care vs End-of-Life Care

• End-of-life care is a component of palliative care.
• Palliative care addresses all aspects of a patient’s quality of life and starts early in the disease trajectory.
• End-of-life care is provided during the last weeks, days, or hours of life.
• Palliative care does not hasten death; it manages pain and symptoms, and addresses concerns related to death, promoting optimal functioning and quality of life during the child's remaining time.
• Pediatric palliative care views the child and family as a single unit of care.

Interprofessional Team

• An interprofessional team, like social workers, chaplains, nurses, personal care aides, and physicians, can supports the family by addressing physical, emotional, social, and spiritual issues.
• Palliative care aims to create a therapeutic, homelike environment, if not at the child’s own home.
• Education and support for family members foster open communication about the child’s dying process.

Decision Making at the End of Life

• Discussions about incurable conditions and inevitable death are stressful for everyone.
• Physicians, healthcare teams, and families should review all information to reach agreed-upon decisions that significantly affect the child and family.

Ethical Considerations

• Ethical concerns arise when deciding on the best care for a dying child.
• There are concerns that withholding treatments that may cause pain but extend life could be seen as euthanasia or assisted suicide.
• Euthanasia is directly ending a patient’s life by someone other than the patient to relieve suffering.
• Assisted suicide is providing a patient with the means to end their life, which the patient then uses.
• The key difference is who performs the action that ends the patient’s life.

Medical Assistance In Dying (MAID) in Canada

• Medical assistance in dying (MAID) is legal for adult patients who can consent.
• MAID involves a medical condition that causes lasting, unbearable suffering or when death is reasonably foreseeable.
• Currently, MAID is not applicable to infants, children, and adolescents in Canada.
• Mature minors with the capacity to consent may seek eligibility in the future.
• Healthcare providers can offer factual information about MAID legislation and ensure palliative care and supportive services are available.

Canadian Nurses Association (CNA) Code of Ethics

• The Canadian Nurses Association (CNA) Code of Ethics addresses the nurse's role in caring for the dying patient, regardless of age.
• This care includes fostering comfort, relieving suffering, advocating for adequate relief of discomfort and pain, and helping people meet culturally and spiritually appropriate care goals.
• Working to relieve pain and suffering by using symptom management, to allow persons receiving care to live and die with dignity
• It includes encouraging those at the end of life to clarify their wishes and listening to their stories to understand their goals.

Health Care Team Decision Making

• Health care decisions are based on disease progression, treatment options, the impact of treatments, and the child’s prognosis.
• Main factors in end-of-life discussions include the child’s age, cognitive condition, functional status, pain, survival probability, and quality of life.
• Open communication enables shared decision-making about no CPR (DNR) orders and comfort-focused care.
• Many families do not get the option of terminating life-sustaining treatment and focusing on comfort care when a cure is unlikely.
• Staff may avoid raising the question of DNR orders, thinking that not saving a child is a failure and lacking palliative care knowledge.
• Ethics committees or consultants can assist if parental decisions differ from the health care team’s recommendations.