For Emily to be assessed by the general practitioner, she and her mother need to travel approximately 60 km over dirt and bitumen roads. Emily finds this tiring and that it increases the pain and breathlessness that she experiences.
Margaret is a general practitioner who has been caring for Emily since her birth 10 years ago. As with many rural communities, she is acquainted with Emily’s family.
Many children with life-limiting illness are cared for by a multidisciplinary team including specialist palliative care providers as well as primary health and community health professionals. Being cared for by palliative care does not mean that a child is dying, in fact many children with life-limiting illness live into adulthood, but palliative care helps them to live as well as possible.
Paediatric palliative care is a highly specialised area of healthcare. A collaborative approach to care and decision-making is required to effectively respond to the complex needs of children and their families and enable ongoing support across the illness trajectory and outside of specialist settings. The transition to palliative care can be an especially difficult time. Coordination of care between acute and palliative care services is very important.[1]
Specialist paediatric palliative care services generally act in a consultative way to support the other members of the healthcare team, providing advice on pain and symptom management, practical supports and support during complex decision-making processes.[2]
Shared care models are commonly used in paediatric care. In these models, there is joint responsibility for care that is agreed between primary and specialist healthcare providers, the child and family. Shared care models are especially important for children and families living in rural and remote settings. Some strategies that support a shared care approach include:
Ensuring continuity and coordination of care for children and families is critical. A care coordinator is someone who has ongoing involvement with the child and family during the palliative care phase or during transition from paediatric to adult services. Some expectations of this role include:
Key elements of a coordinated service delivery model for children with life-limiting illnesses are included in the following table. [1-2, 4]
| Integrate services across the continuum of care |
|
| Provide appropriate home-based support |
|
| Provide a coordinated, flexible and responsive program |
|
| Improve access to services for rural communities |
|
| Improve the interfaces with other related sectors |
|
| Develop and implement educational programs |
|
| Provide professional development |
|
Symptoms can manifest differently in children when compared to adults. Children may also have different psychological, behavioural and social responses to symptoms. As a child’s body grows and develops rapidly, frequent assessment and updating of management strategies is required. [1-2]
Fear of uncontrolled pain and other distressing symptoms is a source of anxiety for children and their families. Poor symptom management, especially at end of life can impact on the family’s grief and healing after the child has died.[1,3]
Children’s self-report of their needs and experiences is important, although the way such assessment is conducted needs to take into account the unique characteristics of the child. The observations of family members and health professionals are integral to identify the child’s needs especially where children are too young or unable to communicate effectively how they feel.[4-5]
Symptoms that can be experienced by children with life-limiting illnesses include:[1-2, 6]
Management of symptoms requires:
Pain and symptom management in children with life-limiting illnesses is especially complex due to the unique biological, pharmacokinetic, psychosocial, and spiritual factors associated with a child’s growth and development.
For example, measurement of pain for infants, younger children and children with neurological impairment, is more accurate through non-verbal assessment and through observing changes in their body and behaviour. [6] In older children and adolescents, using a scale to self-report pain can be an effective tool. A systematic review of tools used found the effectiveness of tools depends on the child’s age, purpose of using the tool, questions asked and implementation of the tool. [1]
Children’s metabolic rates and physical size require specific dosing protocols for medications and regular review for the pharmaceutical management of pain. Consultation with a specialist pain health professional or paediatric palliative care service is recommended if there is any unfamiliarity in paediatric dosages. [2]
Margaret has organised a case conference via videoconferencing with the Paediatric Cardiology Team and Paediatric Palliative Care Service. Both services are located in a large metropolitan hospital.
The Paediatric Cardiology Team has been involved with Emily’s care since her birth. Emily’s medical records were sent through to the Paediatric Palliative Care Service prior to the meeting for review.
Children and their families have most of their needs met through the family and community networks. These networks include schools, churches, sporting groups, neighbours, friends and community health services. Some families can have specific people in the community (eg, Elders, spiritual or community leaders, or extended family members) who need to be involved in decision-making regarding health care. This particularly important to consider when working with Aboriginal and/or Torres Strait Islander families.[1]
Psychosocial, spiritual and cultural assessment includes consideration of:
Communication with Aboriginal and Torres Strait Islander families regarding these aspects of care can be supported by using culturally-specific discussion-starter cards, such as the Yarning Companion Resources.
Adolescents have unique support needs as the dynamics involving the adolescent, their family and health professionals change. Psychosocial, hormonal changes, cognitive and physical growth and developmental changes occur in teenagers and adolescents that require unique care and communication. Transitioning adolescents to adult care facilities requires careful planning between adolescents, families and health professional teams.[4]
Strategies that assist with a successful transition of care to adult centres include:
Children are cared for in a variety of settings including at home, hospice (in some states and territories) and acute care facilities. When children are cared for away from home, parents require unrestricted visiting, clear communication with staff and involvement in decision-making. [4]
Family structures and households are diverse. Health professionals need to understand circumstances unique to each family. Parents need to feel they can trust and access the healthcare team, be able to ask questions and be kept informed about their child’s progress. [1] Parents can also have different perspectives and needs from each other, so it is important to respond to individual needs.
Caring for a child with life-limiting illness can be physically and emotionally exhausting, often for an extended period of time. It is important to help families to maintain hope, by using a ‘hope for the best, prepare for the worst’ approach.[2]
Strategies should be offered to assist parents and carers to deal with this level of stress, including:
Psychosocial support for parents involves recognising the meaning and impact of their impending loss. It also involves engaging with parents about their thoughts and feelings as they provide end-of-life care to their child. Parents who have lost a child have described valuing health professionals who:
Guilt can be experienced and acting out, attention seeking and becoming withdrawn are behaviours that can be displayed by siblings of children with a life-limiting illness. Stress in siblings can be reduced if they are supported, prepared for their sibling’s death and have close family relationships. [5]
Grandparents can be a supportive lifeline for families. Strategies to assist grandparents include:
Respite or short breaks can be beneficial for both children and their families by assisting to prevent carer burden. Respite can be provided in the form of direct respite where children are cared for either at or away from home, or indirect respite where support workers assist with domestic chores and babysitting of siblings. Respite services for children often meet specific needs such as education, play and social interaction that assists to reach developmental milestones. For adolescents transitioning to adult respite services, extra activities required for development need to be identified.[7]
Bereaved parents can become quite isolated as other families with children may inadvertently avoid them and avoid discussing the deceased child – sometimes because they don’t know what to say. Communities and schools can offer much needed support to families. Communities as a collective can experience grief both privately and publically, which may require support on a larger scale. Myths and inaccurate information can be passed around a school or community. Leaders and teachers should be supported, with permission from the family. Education and support can assist with developing an appropriate awareness and understanding within a specific community setting. [8-9]
The Compassionate Communities movement have some helpful resources to support communities in caring for families.
Parents are at an increased risk of psychological distress and complicated grief following the death of their child. [5] As well as careful communication during a child’s palliative care, it is useful to arrange professional bereavement follow up after a child’s death to allow parents to:
Emily is now 12 and her health has continued to decline over the past 18 months. Emily’s extended family, friends and school community have continued to be supportive.
As children with life-limiting illnesses are often under the care of health professionals for many years, the end-of-life phase and the death of a child can be distressing for health professionals.[1] An opportunity for family and health professionals to talk in a safe environment can have lasting positive effects. [2]
Self-care strategies are described in PCC4U Module 2.
Cultural diversity in Australia
Australia has always been a multicultural continent. Aboriginal and Torres Strait Islander peoples are the First Nations peoples of Australia, and have lived on this land for over 60,000 years. They are the oldest continuous cultures on Earth. There were many different language groups and cultural ways before the arrival of Europeans. Significant diversity of cultures, social structures and ways of life exist among First Nations peoples.[1]
Australian society today has one of the most culturally-diverse populations in the world, as these key statistics illustrate:[1-4]
Cultural safety and its application to palliative care
It is important to acknowledge cultural and linguistic diversity and to provide care and support according to people’s preferences. Your personal attitudes and beliefs can distort how you perceive people from different cultures and diverse groups. Cultural safety provides an important framework for palliative care. It involves health professionals examining their own beliefs, behaviours and practices, as well as issues such as institutional racism, to ensure that their services are perceived as safe by the person receiving care.[5]
Cultural safety is a framework developed by Māori nurse, Irihapeti Ramsden in the late 1980s. It extends beyond cultural awareness and cultural sensitivity and aims to ensure that the care provided meets the person’s cultural needs and promotes feelings of being safe.[6] Cultural safety provides the framework in which to deliver culturally-responsive care.[7]
Additional learning on cultural safety and culturally-responsive care is provided in PCC4U Focus Topic 2: Prerequisite Knowledge
Diversity is what makes a person or group unique and is not just associated with ethnic background. Diversity can be reflected in many ways including ethnicity, cultural background, language, religion, gender, sexual orientation, age, socioeconomic status and disability status.:[1-3]
Diversity influences health beliefs and care practices, including beliefs about dying, death and bereavement. However, a person’s preferences cannot be assumed based on their identification with a particular group. Individual and family needs and preferences should be discussed to ensure that people receive the right care at the right time.[2, 4]
This content is covered in more depth in Core Module 1: Activity 3
Barriers to palliative care
A recent report by the Australian Government has highlighted that there are various groups of people in our communities who experience barriers to the provision of palliative care. These include:[6]
| Underserved populations: | People living with different types of vulnerability: |
|
|
It is important to note that there is considerable diversity among people within and between these groups. There are also many people who experience more than one of these types of vulnerabilities. What these diverse groups have in common is that they all experience barriers to accessing palliative care.[6]
A history of disadvantage, marginalisation and trauma contributes to an increased risk of chronic disease and life-limiting illness, and therefore an increased need for palliative care, especially later in life. Unfortunately, the cultural and personal factors involved contribute to significant barriers to accessing healthcare, particularly palliative care. This can mean that those who have the greatest need for palliative care, are among those least likely to receive it.[6]
The most important strategy for improving access to palliative care is to shift from providing special care to people from underserved populations to providing inclusive care to all people.[6]