The World Health Organisation defines palliative care as “an approach the improves quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical and psychosocial and spiritual” (WHO, 2010). Palliative care for children is perceived as distinct to adult palliative care and is defined as “the active total care of the child’s body, mind and spirit, and also involves giving support to the family” (WHO, 2010).
As a result of the ageing population, there is an increasing need for specialist palliative care. Whilst it used to only be available to people with cancer, it is now being made available for other illnesses such as AIDS/HIV, motor neurone disease, chronic obstructive pulmonary disease, and other life-threatening conditions. There are two groups of client who specialist palliative care social workers assist: clients with life-threatening or terminal conditions and those who are bereaved; in both cases, work is with adults and children.
All social workers will work with clients facing life-threatening illness, death, grief, and bereavement, playing a fundamental role within an interdisciplinary team of professionals (e.g. nursing staff, physiotherapists, nutritionists, etc.). In many instances, the social worker provides support to other healthcare professionals.
According to the report of the National Advisory Committee on Palliative Care (NACPC, 2001), there are three levels to palliative care:
Level 1: Palliative Care Approach
Level 2: General Palliative Care
Level 3: Specialist Palliative Care
Regardless of level, palliative care should be available in all settings, including acute hospitals, hospices, oncology wards, and within the community. Specialist palliative care social workers practice across health and social care, providing a network between the two, as well as between health professionals working in either domain. By coordinating communication between the multidisciplinary team and consulting with outside agencies (e.g. primary care providers, and voluntary agencies), social workers actively advocate for the client and their family.
In the specialist palliative care setting, social workers have a number of important roles, offering support and counselling to clients and families, both before and after the clients death. Medical social workers address psychological and social issues that arise during palliative care, including the provision of practical advice on financial issues such as income and debt, help with housing, and access to other services such as advocacy and support groups.
The National Association of Social Workers (NASW, 2004) has produced standards for social work practice in
end of life care
. The nine standards for professional practice within this document are outlined below.
Standard 1: Ethics and Values
The values, ethics, and standards of both the social work profession and contemporary bioethics guide social workers practice in palliative care (NASW Code of Ethics, 2000). The minimal knowledge base needed comprises twelve basic ethical principles. These are: justice; beneficence; non-maleficence; understanding and tolerance; publicity; respect; universality; veracity; autonomy; confidentiality; equality; and finality. Specialised training in palliative care in preparation for the challenges and ethical dilemmas encountered within such work is recognised.
Standard 2: Knowledge
Social workers are required to have knowledge of the theoretical and biopsychosocial factors essential to effectively practice with clients and other healthcare professionals. As an example, they will possess knowledge of the stages of the dying process, psychosocial interventions to alleviate discomfort, and issues related to decision-making during end of life. Knowledge about the impact of financial resources on family decision-making is also required.
Standard 3: Assessment
Assessment is the foundation from which social workers can plan the care and support needed by a client and thus must be ongoing in order to detect changing needs and modify treatment and support.
Standard 4: Intervention/Treatment Planning
Social workers are involved in interventions that enhance the client’s abilities and decisions. This can involve advocating for clients and navigating complex health networks and resources. Examples of interventions include individual counselling, family counselling, information provision, support groups, case management, and discharge planning.
Standard 5: Attitude/Self-Awareness
Social workers in palliative care are required to demonstrate an attitude of compassion and sensitivity to clients, respecting the clients’ right to self-determination and dignity. This involves being reflective and aware of one’s own beliefs, values, and feelings, as well as how these might affect their practice.
Standard 6: Empowerment and Advocacy
The social worker advocates for the needs, decisions, and rights of clients in palliative care, engaging in social and political action that seeks to ensure that people have equal access to resources that meet their biopsychosocial needs.
Standard 7: Documentation
All practice with a client needs to be documented in either the client’s records or medical charts. This ensures consistency of care across health professionals.
Standard 8: Interdisciplinary Teamwork
As noted previously, social workers are part of an interdisciplinary team who are all focused on a shared goal – the comprehensive and effective delivery of palliative care. As part of this team, the social worker advocates for the needs of the client.
Standard 9: Cultural Competence
Social workers are required to partake in continual development of specialised knowledge and understanding of the history, traditions, values, and family systems in relation to palliative care within different groups (NASW Standards for Cultural Competence in Social Work Practice; NASW, 2001).
Standards 2 (Knowledge) and 4 (Intervention/Treatment Planning) comprise the development, use, support, and revision of advance directives throughout the progression of the illness. According to the 1991 Patient Self-Determination Act, patients have the right to make decisions regarding their medical care, including the right to make an advance directive. Hospitals are thus federally mandated to ask adult patients about advance directives.
To conclude this examination of the role of social workers in palliative care, findings from a UK study are presented (Beresford, Adshead, and Croft, 2006). In particular, this study highlighted the value of the unique role of the specialist palliative care social worker, from the perspective of clients who had utilised such services. Ef particular value was the quality of relationships and the fact that care was tailored to their individual needs in a way that increased their autonomy.
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