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Progress in Palliative Care 2010 Vol 18 No 4 205

An overview of contemporary social work practice in palliative care

Susan Cadell1, Meagan Johnston2, Harvey Bosma3, Wendy Wainright4

1Manulife Centre for Healthy Living, and Lyle S. Hallman Faculty of Social Work, Wilfrid Laurier University, Kitchener-Waterloo, Ontario, Canada 2Alberta Children’s Hospital, Calgary, Alberta, Canada 3School of Social Work, University of British Columbia, Vancouver, British Columbia, Canada 4Psychosocial Counselling Services, Victoria Hospice, Victoria, British Columbia, Canada

It is widely acknowledged that social workers play a pivotal role in the delivery of palliative care. A group undertook a process to define and validate social work competencies in palliative and end- of-life care delivery. The aim of this article is to provide an overview of the palliative care social work practice competencies developed in the Canadian context and to illustrate them with case examples. The competencies involve a complex interaction of values, knowledge and skills. The next phase in the development of these competencies is to embed them in the system of social work education at all levels. The case examples illustrate the importance of social work practice in palliative care. They also demonstrate that the competencies are interconnected as certain aspects of social work practice and client and family experience arise in various areas and guises. Ultimately, the goal is excellent palliative care to clients and their families throughout the trajectory of a serious illness and social workers have an important role to play in that.

Keywords: social work competencies, paediatric palliative care, palliative care, hospice care

Introduction

It is widely acknowledged that social workers play a pivotal role in the delivery of palliative care.1 In the Canadian context, social workers have been involved in healthcare and hospital work for many years and have been implicated in palliative care since its earliest history. More recently, various professions involved in palliative care in Canada have moved to formalise the competencies required in palliative care. A pan- Canadian group undertook a process to define and

validate social work competencies in palliative and end-of-life care delivery.2 The present article will focus on describing the competencies and providing examples of social work practice for each one. It is our aim to demonstrate the breadth of practice in palli- ative care across the ages of clients from child to adult and throughout a variety of settings, family com- positions, and cultural influences.

The work of establishing the social work competencies was supported by Health Canada, our national health body, and its Secretariat of Palliative and End of Life Care. The group included social workers from across the country and various practice areas, from hospice to hospitals to education with collective expertise in paediatric and adult palliative

Invited review

Correspondence to: Susan Cadell MSW PhD, Associate Professor, Lyle S. Hallman Faculty of Social Work, Wilfrid Laurier University, 120 Duke St W., Kitchener, ON N2H 3W8, Canada E-mail: [email protected]

care. The national project using a modified Delphi method3 of arriving at the establishment of the competencies has been documented2 and the group continues to work together to develop curricula in social work education. The 11 competencies themselves can be downloaded at the Canadian Hospice Palliative Care Association website (<www.chpca.net>).

The competencies developed in the Canadian context refer to Hospice Palliative Care (HPC) which reflects the national consensus and its body for guidelines of practice, the Canadian Hospice Palliative Care Association. Others have used a variety of terms such as palliative and end-of-life care.4 There is no international consensus on the use of the terms, which can be understood to represent different modalities of care5 and are sometimes used interchangeably. For simplicity and in order to reflect the title of this journal, the term palliative care will be used. This is intended to encompass all modes and types of care that are extended to people and their families when serious illness is involved: hospice, end-of-life, palliative, supportive, bereavement, etc. However, where the competencies are reproduced, the term HPC will be retained in order to respect the original document. In addition, where names are used in case examples, they are pseudonyms.

The competencies identified through this research project also closely reflect the Code of Ethics published by the Canadian Association of Social Workers.6 The Code of Ethics outlines core social work values and principles that provide social workers with guidelines for best practices. The Code of Ethics and the newly developed competencies work in tandem to provide a strengthened foundation for social work practice in palliative care.

In the full document pertaining to the competencies,7

each of the eleven (Table 1) is divided into four sections. The first is a general pre-amble which will be reproduced here. The subsequent three sections provide

the attitudes/values, knowledge and skills required. These three sections will not be reproduced here but we will draw upon these categories in the practice illustrations. The competencies are presented in alphabetical order; no hierarchy or ranking is intended. The competencies are interconnected as certain aspects of social work practice and client and family experience arise in various areas and guises.

Advocacy

The social work profession is fundamentally committed to the promotion of social justice and social change. Therefore, the HPC social worker shall advocate for the needs, decisions, and rights of clients and families in palliative and end-of-life care. Social work advocacy shall address clinical and policy issues at micro, meso, and macro levels of the healthcare system and in the broader community.7

Adolescent development within the context of a progressive life-limiting illness presents significant challenges. Perhaps the most obvious are those relating to the physical dependence often associated with disease progression and the subsequent loss of the typical developmental markers such as autonomy, independence and privacy. Less obvious are some of the systemic barriers related to the delivery of care within a paediatric setting that can impede or hinder development. Subsequently, for these young people, delivering developmentally appropriate care requires considerations at the level of the individual, the family, the healthcare setting, and the larger community.

For instance, Silvia, a 16-year old-girl, is admitted to the hospice for a 4-night respite stay. She has received parental consent to leave the hospice to attend a year-end high school event. Upon arrival at the hospice, Silvia informs the staff that she has made transportation arrangements to and from the event and will be gone from the hospice for an entire evening. Despite written consent from her parents, the policies of the hospice are geared towards the younger paediatric population and do not appear to have the flexibility to respond to her request. The social worker becomes involved in a process of supporting the youth in advocating for what she believes to be a fair request. In addition, the social worker must consider the organisational responsibilities and consult with the administration to determine the legal implications. This is an opportunity to encourage the entire healthcare team to examine practices related to the

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Table 1 List of competencies

• Advocacy

• Care delivery

• Community capacity building

• Decision making

• Information sharing

• Self-reflective practice

• Assessment

• Care planning

• Evaluation

• Education and research

• Interdisciplinary team

care of adolescents and whether policies require adaptation for the provision of developmentally appropriate care.

Assessment

Social workers shall assess clients and families and include comprehensive information to inform decision-making and facilitate care planning and delivery. Assessment is an iterative process that is crucial to team functioning and decision-making. Each professional member of an interprofessional team brings important aspects to holistic assessments of clients and families.7

A comprehensive assessment includes information from all members of the interprofessional team regarding physical, psychosocial and spiritual needs of clients and their families. The social worker must strive to include the family members in the process of care planning and is often situated as one of the members of the healthcare team who can bring the voices of the client and family to the team discussions and help determine the goals for care. Assessment is an on-going process because care needs and priorities frequently change over time and as an individual’s physical status declines.

Mr Lee was an 80-year-old Chinese man with end- stage liver disease whose 79-year-old wife was his primary caregiver. Recently, Mr Lee’s needs had increased markedly and he now scored 30% on the Palliative Performance Scale (PPS),8 indicating that he was primarily bed-bound, although he could sit in a chair periodically with a two-person assist for transferring. He was also having difficulty swal- lowing and, therefore, various medications needed to be administered subcutaneously. The PPS score also indicated that Mr Lee’s prognosis was now likely in the range of several weeks. The social worker met with Mr and Mrs Lee to review these changes, and he informed the rest of the team that Mrs Lee was feeling very anxious and overwhelmed by the possibility of her husband’s return home. The social worker also explained that Mrs Lee had expressed privately that she did not want Mr Lee to die at home because it would be unlucky for her to remain there afterwards. This current assessment indicated that a transfer to a hospice would be most appropriate for Mr and Mrs Lee’s needs at this time. The social worker agreed to arrange a family care conference with Mr and Mrs Lee to discuss this option with them.

Care delivery

Care delivery in HPC is based on the assumption that the person living with terminal illness and his or her family is the unit of care, and that an interdisciplinary team, which includes social work, best provides such care. Care delivery is regularly reviewed and adjusted according to changing care needs throughout the course of illness and into bereavement.7

In paediatrics, care delivery changes over time as the child’s disease progresses and both the child and the family have to make the needed adjustments. These changes can follow a developmental trajectory that seems to be happening in reverse as previously independent children lose abilities and become increasingly dependent on the adults and care team members in their lives. For instance, this can be the case when a child has a brain tumour and loses the ability to speak.9

Similar issues arise in adult palliative care where the family is central to care delivery. As illness progresses, adults also may lose abilities they had previously. Social workers can assist clients and family members to express themselves and their wishes. Asking the client and family to consider ‘hopes’, ‘fears’, and ‘wishes’ is one way to gain perspective and understand how everyone in the family is understanding and experiencing the illness. Social workers can play an important role in the effective delivery of care through facilitation of conversations that balance the maintenance of hope and realistic expectations.

Care planning

The social worker shall engage in a collaborative process of decision-making that involves the client and family and HPC team to establish relevant and feasible care plans.7

Gerry was an 18-year-old boy who was diagnosed with Duchenne’s muscular dystrophy in his youth. The team at the hospice had set up a meeting with Gerry and a few of his family members to discuss the transition from paediatric to adult services. During the course of the meeting, it became apparent that Gerry and his family were under the impression that the diagnosis was reversible and that if Gerry just ‘worked hard enough at his physical strength’ he might recover or at least ‘undo’ some of the losses he had experienced. After the meeting, the social worker began meeting with Gerry to provide some support as well as education regarding disease progression.

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However, in the course of several meetings, it became apparent that this focus on ‘strength’ was in fact motivating Gerry to challenge himself outside of his comfort zone. The assessment process involved gaining a greater understanding of the role this belief system was playing in the day-to-day living of this youth. The subsequent care planning then involved connecting him to a trainer in his community who would commit to supporting the physical development of Gerry. The team did take the opportunity to provide relevant medical information but did not attempt to steer Gerry away from the activities that he believed would be of benefit.

Community capacity building

Quality HPC requires the commitment and support of organisations and communities. Therefore, social workers perform important functions to build HPC capacity in the community as a whole.7

The development of these competencies3 is an excellent example of social workers working together to ensure increased capacity in their own community of practice. The social workers who took part in the process were joining in the effort begun by fellow practitioners.

Social workers often play an important role in the training of volunteers. Volunteers form an integral part of palliative care in Canada and are trained to work in community, hospice and hospital settings. One large Canadian city has recently implemented a programme of centralised volunteer training for palliative care. Rather than having each facility train its own volunteers, a programme has been designed and implemented by social workers to prepare people for various care locations. Social workers also have a role to play in other settings where the principles of palliative care might be of benefit, such as long-term care facilities.10 Efforts such as these build the palliative care capacity in the larger community.

Outside the palliative care community, social workers are involved in many forms of public education, from interviews on aspects of psychosocial care for local television and papers to conference presentations to community events that offer seasonal support for those who are bereaved.

Evaluation

Social workers shall regularly evaluate clinical and programme processes and outcomes to ensure that the needs of clients and families at the end of life are

clearly identified and are responded to as effectively as possible. Confirmation of the efficacy of interventions is important because palliative and end- of-life situations are complex and marked by on- going changes. Therefore, social workers shall conduct evaluations in concert with clients, families, and other interdisciplinary team members so as to enhance and assure consistent quality of care.7

Evaluation can take many forms. Social work students on practicum evaluate their practice by reviewing and problem-solving in conjunction with their supervisor. Evaluation of practice can also take the form of the social worker in palliative care asking a client or family member if their conversation was helpful.

Ruth is a woman in her seventies with advanced cancer who would like to return home from hospital. She has been widowed for 12 years and her two adult children live in the same community but are reluctant to have Ruth in her own home. A family meeting is conducted with Ruth’s children, Ruth, and several members of the healthcare team. Each person’s point of view is solicited and the physical changes that Ruth has been experiencing are reviewed. Supports that can be put into place in the community are also discussed. After the meeting, the social worker meets with Ruth’s children. The social worker has charted the family meeting and would like to check that she has captured what Ruth’s children understood. Ruth’s children agree and comment that this was the first time that they had heard why their mother wanted to return to her own home. They had had no idea that she felt so strongly or why. Through the family meeting and the evaluation of the process afterward, the social worker has ascertained that Ruth’s children are now fully committed to working to get her home.

Decision making

Social workers shall apply information gathered in assessments to assist clients and families to make decisions appropriate for themselves.7

Decisions around care change as the condition or illness evolves. Decision making around the care of a child is one of the expected parental responsibilities. Parents are faced with many challenging decisions throughout the trajectory of an illness. The experience in paediatrics is that decisions around hydration and nutrition are among the most difficult. Parents instinctively want to feed their children and the decision to stop is a challenging process. Often, the social worker can play an important role in supporting

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this decision and recognising the angst and conflict that arises. Providing acceptance, support and validation are skills that social workers can offer to support this process, whether it occurs in paediatric or adult settings.

An example from adult care is Li, a Chinese man who was in his final days. His family held the cultural belief that a person should not die without food in his stomach so it was very important to them to feed Li. The social worker worked with Li’s family when it became unsafe to feed Li anymore. After extensive discussion, the family and the social worker settled upon the alternative of bringing food into Li’s room so that it was present for him when he died. The social worker supported the family in making a decision that was appropriate for them.

Education and research

Social workers perform important functions of education and research in HPC. Social workers bring a psychosocial perspective to the development and implementation of both social work and interdiscip- linary educational and research initiatives.7

Students are keen to learn about palliative care; the knowledge and skills can be built into practicum placements, existing courses on practice or in stand- alone offerings. One example of an interprofessional course in palliative care11 has a strong influence of social work throughout the design and the delivery of the education. Another example is an intensive course on psychosocial care of the dying that is offered to any interested healthcare professional; the social workers involved in the course have written a book12 which serves for those who take the course and beyond. Finally, social workers are regularly invited to teach general and focus-specific classes on death and dying.

In terms of research, the holistic nature of social work is of benefit. Whether social workers function as part of a research team with other professions,13–15 in social work teams16,17 or alone,18 they have an important role to play in the commitment to pose questions that advance knowledge of what clients and families are experiencing and in ensuring that the knowledge is translated back into practice.

Information sharing

Given appropriate resources, human beings are capable of growth and change and should be supported in solving their problems and directing

their lives. As part of HPC, social workers provide information to clients and families accordingly at the end of life.7

Families digest information differently and the social worker can provide the team with insights about how to share information with each family appropriately. Training in communication styles and family systems/dynamics can facilitate a deeper understanding of how the team might strategise to communicate with families in a way that is congruent with both the needs of the family and of the team. Prioritising information about instrumental supports may be more relevant for particular families. Alternatively, some families may request to have information ‘kept’ from one another and, therefore, a process of exploring why this might be the preference creates the opportunity for the social worker to provide the bigger picture and relay some of what is known through experience. Sometimes, offering examples from the experiences of other families or connecting family members to others who have experienced a similar situation is a way to address patterns of information sharing that may appear to be problematic.

On occasion, parents want to keep information from siblings in an effort to decrease the distress and concern. Marly was a 14-year-old with three younger siblings. Marly’s parents asked the team to refrain from discussing anything about the diagnosis or illness condition with the three other children. The teacher at the hospice reported that the siblings were ‘acting out’ in the classroom and the recreation therapist noticed some significant regression occurring. The social worker was consulted and began by meeting with the parents to discuss their wishes and their concerns. Prior to entering this meeting, the social worker gathered relevant information regarding each child’s age and developmental level. Through a process of conversation, the social worker was able to convey some important information and provide resources about the developmental understanding of illness and death. As well, stories from other families were shared and the parents were offered suggestions that fit with their communication style.

Interdisciplinary team

The interdisciplinary team is the clinical context within which HPC social work is practiced. The team brings together multiple perspectives, opinions and expertise to ensure holistic care for clients and families at the end of life and into bereavement. The

role of social work is to ensure psychosocial care is core to all aspects of caring for clients, families and the team itself.7

Working as part of an interdisciplinary team, the social worker must be open to, and enhance, the multiple perspectives offered by the various professionals providing care and work to facilitate the best connection possible with the client and family.

Sarah was referred to a paediatric hospice when she was born with significant chromosomal abnormalities. The interdisciplinary hospice team attempted to meet with the parents several times but were refused. The team discussed this case and determined that it would be best to give the parents some time while being cared for at the hospital. A few weeks later, the hospice team learned that Sarah and her parents were at home and having a difficult time. In consultation with the team that cared for her in the hospital, the social worker determined that the parents would be most receptive to a home visit by the chaplain. During the visit, the chaplain was able to see that Sarah’s pain was not at all controlled and that the parents were living with curtains closed, lights off, and without making any noise as Sarah was extremely sensitive. He convinced them to consider a visit to the hospice. After several visits, they agreed to be admitted. During this admission, the team slowly introduced the various services offered. The physicians were able to control Sarah’s pain, and the parents connected with the social worker who was also the bereavement counsellor, a relationship that extended for several years during the care of Sarah and after her death. As well, siblings were offered educational and recreational services.

Self-reflective practice

The goal of self-reflection is to enhance practice by situating oneself in relation to HPC work and to recognise the reciprocal nature of the relationship between self and work.7

The social worker’s role in palliative care is an on- going process that requires time, attention and effort. In many settings, regular debriefings are held when a client has died. The social worker presents the care that was provided from a psychosocial perspective. The social worker can play an important role in modelling self-reflective practice by providing opportunities for exploration of values, beliefs and feelings related to the losses experienced.

Self-reflective practice is a means for social workers

to increase and share their understanding and awareness about what is contributing to compassion fatigue in themselves and other team members.19

Social workers can model the process of understanding the impact on themselves of palliative care work by identifying for themselves and other team members the need for boundaries and how working in a team can help us maintain those limits. At the same time, this practice of reflection can aid in identifying and fostering compassion satisfaction.

Conclusions

The aim of this article was to provide an overview of the palliative care social work practice competencies developed in the Canadian context and to illustrate them with case examples. The competencies involve a complex interaction of values, knowledge and skills. The next phase in the development of these competencies is to embed them in the system of social work education at all levels.

While all healthcare professions have a role in the holistic, multidimensional care of those who are ill, dying and bereaved, social workers bring their own lens to the work. Their focus is to help others (re)discover their resources and move into the future, however long, from a place of strength. Trained in a systems approach, social workers help the team hold the big picture, remembering that each person and family exists in a social context.

These case examples illustrate the importance of social work practice in palliative care. Ultimately, the goal is excellent palliative care to clients and their families throughout the trajectory of a serious illness and social workers have an important role to play in that.

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