It’s a common misconception that palliative care and hospice care are one and the same. While they are related, the truth is that hospice care is a specific type of palliative care that focuses on end-of-life comfort for older patients. Meanwhile, palliative care itself is a comprehensive approach to improving the quality of life for individuals facing serious illnesses at any stage of their life and illness trajectory. It’s all about providing the patient and their family relief from the symptoms and stress of the illness, ensuring that the care they receive aligns with their values and goals. Additionally, palliative care also aims to support the patient emotionally, socially, and even spiritually.

In short, palliative care can be integrated alongside curative treatments and does not necessarily mean giving up hope for recovery.

What Is Paediatric Palliative Care and Who Can Receive It?

Paediatric palliative care specifically serves children facing a variety of serious illnesses. The World Health Organisation has four categories of the types of conditions that might require this level of care. One refers to life-threatening conditions with potential curative treatments, such as certain cancers or organ failures. Another pertains to conditions where premature death is inevitable, like severe congenital anomalies or genetic disorders. The next category comprises of progressive conditions without curative treatment, such as neurodegenerative diseases or advanced stages of HIV/AIDS. Finally, there’s a category of paediatric palliative care for irreversible but non-progressive conditions such as severe brain injuries or certain birth defects.

Regardless of the young patient’s diagnosis, the goal of paediatric palliative care remains the same: to provide holistic support to children and their families throughout the illness journey. This can be done in the following ways.

Primary Palliative Care

Primary palliative care refers to the foundational level of palliative care integrated into routine healthcare services. It is provided by facilities like a paediatric clinic or hospital and the healthcare professionals involved in the care of children with serious illnesses. This includes paediatricians, nurses, social workers, and other members of the healthcare team.

The goal of primary palliative care is to address the basic needs of children and their families, such as pain and symptom management and psychosocial support. It is often provided alongside curative treatments. This type of palliative care also aims to improve the quality of life for children by alleviating suffering and enhancing comfort. It involves discussions about specific goals and advance planning, which can help ensure that care is aligned with the child’s and family’s preferences and values.

Specialised Palliative Care

Specialised palliative care is provided by a multidisciplinary team of specialists with expertise in paediatric palliative care. This level of care is tailored to meet the medical, emotional, social, and spiritual needs of children facing serious illnesses, as well as their families. It is often recommended for children with advanced or complex conditions that require specialised symptom management, emotional support, and coordination of care.

To develop a personalised care plan, healthcare professionals and establishments that offer specialised palliative care first carry out comprehensive assessments of the child’s and family’s needs. Among the services involved in specialised palliative care are pain and symptom management, counselling, spiritual care, and bereavement support. These can be provided in various settings such as hospitals, clinics, and homes.

Hospital-based Palliative Care

There are cases where palliative care is implemented within a hospital setting, such as in inpatient units, outpatient clinics, and consultation services. This falls within the category of hospital-based palliative care. The medical teams that offer this type of care work closely with other healthcare providers to ensure coordinated and comprehensive care for children and their families.

Hospital-based palliative care is often provided to children with serious illnesses who require intensive symptom management and 24-hour monitoring, complex medical interventions, or end-of-life care. Hospital-based palliative care may involve regular consultations with palliative care specialists, access to specialised treatments and interventions, and support for families navigating the hospital system.

Home-based Palliative Care

Home-based palliative care, on the other hand, allows children to receive services in the comfort of their own homes. This enables the patient to be surrounded by their families and loved ones. This level of care is recommended for children who prefer to be at home or whose medical needs can be safely managed outside a hospital setting.

Among the provisions of home-based palliative care are nursing visits, medical equipment and supplies, and support for caregivers. This setup allows families to maintain a sense of normalcy and continuity in their daily lives while receiving the support they need to care for the patient. Home-based palliative care also promotes greater autonomy and empowerment for families by allowing them to be actively involved in their child’s care and decision-making process.

Hospice Care

Paediatric hospice care is a type of palliative care provided to children with life-limiting illnesses who are no longer receiving curative treatment and have a prognosis of six months or less to live. It focuses on maximising comfort and quality of life in the final stages of the illness and life. It is often provided in the child’s home or in a hospice facility.

The services included in paediatric hospice care are pain and symptom management, emotional and spiritual support, as well as assistance with practical needs such as respite care and bereavement support for families. This type of care aims to ensure that children and their families receive compassionate and dignified end-of-life care that honours their wishes and values.

Perinatal Palliative Care

Perinatal palliative care provides support to families facing a prenatal or neonatal diagnosis of a life-limiting condition. This level of care is designed to help families make informed decisions about their child’s care and prepare them for the challenges ahead. Perinatal palliative care may involve discussions about treatment options, advance care planning, and support for coping with grief and loss. It aims to ensure that families receive compassionate and holistic care throughout the pregnancy, birth, and postnatal period, regardless of the outcome.

The Overlapping Nature of Palliative Care

Paediatric palliative care is not static; it can evolve over time based on the child’s condition and the preferences of the family. Children may transition between different levels of care as their needs change, starting with primary palliative care and potentially progressing to specialised or hospice care as the illness advances. The level of care a patient needs may also vary based on factors such as disease progression, symptom severity, and family dynamics. Paediatric palliative care teams work collaboratively with families to assess their needs, provide appropriate support and interventions, and adjust the care plan as necessary.

By offering holistic and individualised care, paediatric palliative care aims to improve the quality of life for children with serious health conditions. Through it, the patient and their families can access comfort, support, and dignity throughout the illness journey.