4.4 Social work in palliative care

In 2001, Dame Cicely Saunders authored a commentary entitled Social Work and Palliative Care—The Early History. She documents the integration of social work in hospitals in the United Kingdom as early as 1905 and describes her own experience in the 1940s when she trained as an almoner (medical social worker), complementing her nursing education and predating her decision to become a physician. During 1905, in the United States, Massachusetts General Hospital would be the first hospital to employ social workers. This was consequent to the vision and commitment of Richard Cabot, a physician who observed that social and psychological issues were intimately entwined with medical care and health (Gehlert, 2012). Saunders links the reciprocal and enriching work of social work authors by honouring the work of Ruth Abrams, who, as early as 1945, published in The New England Journal of Medicine a study of 200 people with cancer receiving end-of-life care. She writes of her discovery of Alison Player’s (1954) article ‘Casework in Terminal Illness’ and credits Margaret Torrie, a social worker in the United Kingdom, with founding Cruse Bereavement Care, a national organization that continues to provide bereavement care at no cost. Additional articles reflecting early social work contributions include Aitken Swan’s (1959) report of interviews with families of 200 people with cancer cared for at home and Bailey’s (1959) survey of the social needs of 155 people with lung cancer. Lastly, Dame Cicely tributes Zelda Foster, whose writings influenced the care of terminally ill veterans and their families, an impact that extended much beyond the Veteran Hospitals.

This early link of palliative social work clinicians in the United Kingdom and the United States provided a foundation for the evolving specialty which continues to be enriched by social work practitioners across the world. The international nature of the specialty was reflected in the Social Work Summit held in 2005 at the National Association of Social Workers (NASW) in Washington, DC. The Summit included clinicians, researchers, and educators. The Oxford Textbook of Palliative Social Work published in 2011 includes an international section honouring the skills, resilience, and diversity of the social work contribution to palliative care around the world. In addition, in the United States, NASW competencies have been established by NASW and in 2007, a monograph titled What Social Workers Do was published by the National Hospice and Palliative Care Organization. In Canada, research was undertaken to validate competencies (Bosma et al., 2009) and in the United Kingdom the work of Beresford and colleagues (2007) enhanced our understanding of service users’ perceptions of specialist palliative social work.

The definition of palliative care selected for this chapter is the most recent World Health Organization definition (World Health Organization, n.d.). In the United States, the National Consensus Project for Quality Palliative Care (2009) defines a similar scope which is informed by guidelines describing core precepts and structures.

Both documents reflect a commitment to psychosocial and spiritual aspects of care. As with other disciplines, the immediate focus of social work intervention and advocacy is often determined by the urgency of needs, resources available, and the challenges presented by social, political, and economic factors. Thus around the globe the contributions of social work will vary. In some settings, palliative social workers may integrate the psychosocial and spiritual aspects of pain and symptom management as a focus of assessment and intervention. However, in many parts of the world where access to opioids is limited, the primary mandate may be advocacy focused on improving access to medications for patients who suffer with unremitting pain during illness and at the end of life. In some settings the commitment to autonomy is actualized by social work participation in the comprehensive work of advance care planning while in other settings this focus on the future may be incongruous with social, spiritual, or cultural values.

No matter where in the world social workers practise, there is a unifying code of ethics that speaks of values inherent in the profession many of which are reflected in core principles of palliative and end-of-life care. In 2004, the International Federation of Social Workers (IFSW) and the International Association of Schools of Social Work (IASSW) approved a joint document Ethics in Social Work, Statement of Principles. As in palliative and end-of-life care, overarching principles and values frame social work practice and are reflected in the following definition:

The social work profession promotes social change, problem solving in human relationships and the empowerment and liberation of people to enhance well-being. Utilising theories of human behaviour and social systems, social work intervenes at the points where people interact with their environments. Principles of human rights and social justice are fundamental to social work. (IFSW and IASSW, 2004, p. 1)

As the concepts of relationship, human rights, empowerment, and social justice are operationalized, we begin to identify the perspective and expertise that social workers bring to palliative practice. Respect for the inherent worth and dignity of all people is related to supporting their physical, psychological, emotional and spiritual integrity, and well-being. Autonomy and participation are linked to a respect for strength and resilience, and treating the whole person within their environments. The social justice focus extends both to the individual and to society as a whole and in elucidating this value; the inherent commitment to diversity and to advocacy is reflected. While the nature of advocacy may be influenced by the population served and the part of the world in which social workers practice, the social justice mandate and commitment to the under-served does not dissipate but rather changes in focus and form. This joint document guides professional conduct and speaks to many common values such as competence, integrity, confidentiality, compassion, accountability, empathy, and critical thinking.

As with other disciplines, social workers listen, think critically, and respond from the perspective of their training. While all palliative care clinicians are expected to provide emotional support and attend to the psychological, social, and spiritual needs of patients and families, there are unique skills brought by each discipline and from these skills flow consequent responsibilities. The ability to identify psychosocial or spiritual distress, while a generic competency of palliative clinicians, does not necessarily assume the skills to intervene, especially in more complex situations. Therefore it is essential to know when to enlist the expertise of interdisciplinary colleagues.

Social work assessment emanates from a systems approach and a view of the person in the multiple environments, internal and external, which influence and inform their experiences. Social workers are therefore, by training, inclined to observe the influence of factors such as illness, medical systems, practical challenges, thoughts and feelings, symptoms, and disability, not only on the person, but on their family constellation and equilibrium. In addition to the environmental perspective the precept ‘starting where the client is’ (Goldstein, 1983) invites a process of exploration and inquiry whether through tools or conversation. This implicitly demands that we ‘listen’ to the multilayered communication that frames the patient’s story and subsequently focuses intervention. Concurrently this inquiry, which extends beyond the medical to the emotional, social and spiritual life of the patient and their family, leads to a thoughtfulness about the boundaries of confidentiality.

Inviting a patient to relate aspects of their personal narrative requires sensitivity to confidentiality given the team nature of palliative care. Information that is shared is often private, personal, and family-related, and patients and families are often unaware that information is shared. Hence implicit consent cannot be assumed. Respect for confidentiality and autonomy mandates that team members request consent to share intimate personal aspects of their lives beyond the medical when necessary. For some clinicians, information wields power, for others it represents an exclusive relationship with the patient, and still for others the need to know comes from simple curiosity. In a specialty based in respect across disciplines, ‘a test of trust’ rests in an acceptance that honouring patient confidentiality and autonomy means that clinicians receive information that is necessary to do their work and that some information may be held confidential both in team meetings and in documentation (Randall and Downie, 1999; Monroe, 2005). Best practice methods suggest that we inform people that to get optimal care information does need to be discussed at a team level with the patient's permission. Additionally, encounters between a health care professional and patient or family requires a dated entry in the clinical record.

Consequent to the environmental perspective, social work attunes to culture, and patient and family’s biopsychosocial-spiritual history to identify areas of strength, resilience, and challenge. This helps to grasp the larger context within which illness developed (Cadell et al., 2011). The assessment process may include screening and/or assessment tools. Alternatively, it may be based in questions and conversation designed to validate the person and family beyond the illness, discover or elaborate areas of concern, sources of distress, and practical needs. At the heart of assessment is relationship, communication, verbal and non-verbal, and critical thinking which guides the process. As such, assessment is also an intervention informed by expertise and based in the listening and respect for the experience and perceptions of the patient, family caregivers, and family. The critical thinking that informs questions and comments often serves to uncover the meanings or interpretations attributed by patient and family to the various aspects of the illness experience. Inquiry about mood, sleep, or pleasure may assist in identifying patients who are anxious or depressed, fatigued, or in pain, leading to an interdisciplinary treatment plan which integrates knowledge of evidence, patient and family receptiveness, and available resources. Social workers with knowledge of symptoms bring valuable observations to medical and nursing colleagues for the purpose of exploring aetiology and crafting a treatment plan responsive to the multiple factors that often inform the symptom experience of seriously ill patients (Block, 2006; Cagle and Altilio, 2011; Walsh and Hedlund, 2011). An assessment process embedded in environment and relationship is adapted to the cultural variables that infuse the lives of patient, family, and clinician as well as the institutions in which care is provided.

Congruent with a focus on environment and strengths, social work assessment includes attention to the role and influence of culture. Culture can be understood as the integrated collection of socially determined and socially transmitted customs and beliefs, which shape the values of a given group of people and influence how they behave and interpret the world around them (Kemp, 2005; Young-Laing, 2009). Therefore, how an individual understands pain and suffering, caregiving, life-threatening illness, and spiritual and social functioning, for example, can be inextricably linked to their cultural background.

While the expectation of social workers and other practitioners is to develop a practice that is responsive to cultural variation, in practice, respect for cultural differences is a continuing and evolving process. Clinicians develop an awareness that they are not culturally ‘neutral’, accepting that we bring to bear not only our individual culture, but also, the culture of our profession or institution and all its corresponding biases, preferences, customs, and beliefs. This attentiveness to self-awareness is an integral aspect of social work training and leads to an understanding of how our cultures influence how we receive patients, or conversely, how they may receive us and how this cultural exchange could impact the evolving relationship. Achieving good clinical outcomes in the setting of such a cross cultural exchange requires sensitivity, respect, knowledge, and the humility to ask for guidance from patients and families (Kemp, 2005).

Many practitioners possess generalist understanding of the role of culture in health care. It is also essential to become familiar with the cultural practices and beliefs of specific populations served, both from personal encounters and enquiry as well as from the literature in order to utilize these insights to intervene clinically (Kemp, 2005; Young-Laing, 2009). At the same time clinicians work to avoid a reductionist approach which stereotypes or falsely imposes the role of culture in lieu of more careful individualized assessment of the client–family–practitioner dynamic. Despite common attitudes and behaviours, there is often heterogeneity among cultures and within families and social work observation and enquiry about the family system works to identify such variation. There can be for example, great variation between generations in the perceived authority of a physician which might impact communication style and lead to familial conflict regarding treatment planning or decision-making.

Language differences abound and are an aspect of culture which can often present as a barrier to accessing quality care. Social work attunes to the many variables at play when the clinical team decides how to access translation services. When available, skilled professional interpreters may provide as close to verbatim translation as possible (Butow et al., 2011). Yet, even then, the subtleties of communication can literally be lost in translation and meanings misconstrued. Interpreters who are prepared by the clinical team can be most effective in carrying out their roles. For example, a patient may use the word ‘tumour’, but never the word ‘cancer’, something an interpreter should know in advance so as not to risk causing unintended harm. In the absence of professionals who speak the language, trained interpreters, or technological interpreter assistance, family members are often looked upon for assistance. While sometimes necessary, this option creates the possibility that family dynamics, personal beliefs, or individual discomfort with sensitive or difficult discussions could lead to distorted messages, things left unsaid or improperly interpreted with the unintended consequence of increased distress for both the family ‘interpreter’ and the family system. Equally important is the reality that the treatment team cannot know what is actually being communicated within the family.

Ultimately, culturally informed practice can illuminate and enrich the clinician–patient–family dynamic, identify areas of confusion, and/or clarify perceptions of illness and treatment. Clinicians often discover a path to culturally syntonic ways to intervene and perhaps identify resources within the cultural community, which contribute to positive clinical outcomes and sustain the patient and family as they transition back into their community. This potential reflects the systems approach which is integral to social work and attends to the interaction of people and the many systems of which they are a part. Respect for the power and potential of systems leads to a special affinity for the value and opportunity in team work and family conferencing, two core processes of palliative care.

Palliative care, at its most comprehensive seeks to address the needs of the whole patient, which in many instances includes family who provide continuity and assist in contextualizing the life of the patient. In the most generic sense, family encompasses biological families, families of creation, friends, and other persons of importance the patient identifies as belonging to their extended network. The family also becomes a unit of care as their needs and experiences are often intertwined with that of the patient. As a result, a family meeting can prove to be a powerful intervention to address the multifaceted needs of both the patient and family.

Family meetings are an important tool to enhance dialogue, provide information, respond to emotional distress, and marshal resources to help problem-solve, make decisions, and establish goals of care. Meetings can also help to substantiate a therapeutic relationship, explore patient and family experiences, and create an opportunity for the team to learn about the patient, and the shared values and beliefs which can prove invaluable in providing quality care (Altilio et al., 2008). Consequent to the complexity and the potential for positive outcomes, a well-planned family meeting often takes preparation ahead of time (Cohen Feinberg et al., 2011). By starting where the patient is, social workers utilize their assessment skills to help the team prepare for a meeting.

Understanding who has requested the meeting and the reason it is being held often guides decisions about who will facilitate and who needs to attend; which family members and which practitioners are essential to the process and expected outcomes. These decisions are rooted in sound clinical judgements including respect for cultural values. For example, outcomes are enhanced when the perceived authority of physicians is acknowledged, marshalled, or mitigated, depending on the needs and particular circumstances of the patient. The patient who experiences their care as fragmented or perceives conflicting messages from team members may benefit from a large cohort of involved practitioners in attendance. Alternatively, the patient who struggles to trust or is intimidated by the power of perceived experts may be best served by careful selection of a limited number of clinicians.

While many medical specialists such as intensivists and oncologists are trained to facilitate family meetings, social workers are often the most comfortable and skilled in group and family dynamics. Although social workers are adept at facilitating discourse, negotiation and skilled communication is only made relevant by careful ‘listening’ on multiple levels. The clinician serving as a ‘silent participant’ and ‘participant observer’ of family and group dynamics and communication processes has a responsibility to complement and enhance the process. Interventions designed to facilitate dialogue, interpret non-verbal communications or clarify confusion are chosen based on active ongoing clinical assessment of the patient and family process both within itself and in relation to the clinical team.

During family meetings, social workers use multiple interventions. They may utilize supportive counselling techniques, cognitive reframing, and anticipatory guidance to assist patients and families as they integrate complex information spoken in the language of medicine and struggle to make decisions which impact the present and the future. They may invite expression of emotion, explore thought and meaning, and enhance informed decision-making and problem-solving as patients and families anticipate and prepare for outcomes or experiences which are unfamiliar and uninvited.

The listening skills implicit in social work training are essential to positive outcomes in family meetings. Indeed, listening is one of the more vital behaviours during a family meeting. The intensive care unit (ICU) is a setting in which family meetings are an assumed part of daily care and therefore much research has focused on palliative and end-of-life care in the ICU and communication with families. While the ICU represents only a portion of the settings in which palliative care is provided, some of the outcomes may have broader implications. Studies suggest that family members feel more positive about communications with physicians when more time is spent listening to the family than speaking to them (McDonagh et al. 2004). Additionally, there have been several studies evaluating the impact of communication in the ICU on the mental health outcomes of family members of patients receiving end-of-life care. While study in this area is ongoing, existing research suggests that there may be a connection between satisfaction with communication and improved mental health outcomes for family members after death (Azoulay et al., 2005; McCormick et al., 2007; Wright et al., 2008; McCormick, 2011). While exclusive to the ICU, this research supports a hypothesis that attention paid by all disciplines to the process of family meetings serves patients and families in the immediate and beyond and thus may be thought of as a pre-bereavement intervention.

Palliative care as a team-based specialty engages multiple disciplines and different schools of thought in an effort to approach the varied needs of patients. Depending on the setting and resources available, a team can vary in size and constellation. In many practices, the ‘person in environment’ concept expands team to include family, community resources, and spiritual communities. Single practitioners may develop ‘teams of creation’ with floating memberships serving the needs of individual patients and families. Even in settings where there are more robust palliative care teams, the needs of the patient and family may be best met by an inclusiveness which invites participation by others who are integral to the patient’s life, such as a long-term community physician, a treating oncologist, or a member of the clergy who has known the patient over time.

While a team-based approach is a key component to quality palliative care, how teamwork is translated into practice can vary according to the model chosen and the skills and training of the team members. The interdisciplinary model rests on synergistic and interdependence of clinicians who come with the unique expertise of their chosen profession as well as shared skills. Most palliative care clinicians recognize that individuals do not parcel out their spiritual, psychological, social, and medical needs but often present an integrated experience that requires clinician flexibility, role sharing, and knowledge both of one’s own skills and those of others. Consequently, clinicians know when to consult for guidance and when to refer to other team experts. An interdisciplinary team is one in which a cohort of professionals with distinct roles and responsibilities act in concert with one another to produce successful outcomes (Crawford and Price, 2003). By creating an adaptive and interactive team environment, the expectation is that the team as a unit will achieve outcomes that exceed those possible if each practitioner were acting as an individual (Crawford and Price, 2003). However, for an interdisciplinary team to function at its best, it requires mutual respect for the different professionals involved, an environment of trust and safety, a willingness to challenge one another, and a recognition that our varied expertise means that we see patients and problems from differing perspectives.

Within the construct of team, social workers are often uniquely positioned consequent to their training in group dynamics, advocacy, and communication. These skills are essential when working with patients and families, and also when functioning as both a participant and an observer within the group dynamic of team. A social worker will listen and assess from a skill set which often identifies barriers, environmental issues, and patient, family, team, and system dynamics which may either potentiate or impede the goals of patients and families. Plans of care and treatment approaches can then be fashioned from a strengths-based perspective and with an awareness of the unique circumstance of the individual patient and family.

Whether intervening within a family meeting, exploring decisions related to advance directives or resuscitation, discussing practical needs, or exploring the suffering component of pain, social work interventions have the potential to impact present treatment plans and to influence legacy if death is the ultimate outcome.

Lilie is the 46-year-old mother of Kevin, age 10 and Jamal, age 15. She came from the Virgin Islands to the United States seek medical care after having been diagnosed with breast cancer at the age of 39. She has two sisters in New York. For the past 5 years disease-modifying therapies have contributed to a quality of life that has enabled her to parent her sons, negotiate a fifth-floor, walk-up apartment, and maintain her independence and privacy. When diagnosed with metastatic disease to the bone, unremitting pain necessitated hospital admission and consultation with the palliative care team. Complementing the active pharmacological management of pain, social work assessment included the following:

During lengthy hospitalizations Lilie forged a valued and reciprocal relationship with the oncology team. She maintained the structure of her family by parenting from the bed, directing Jamal in his care of Kevin. While she initially chose not to engage family to assist with her children, she consented to social work contact with Kevin’s school yet would not allow disease- or prognostic-related information to be shared with her children or extended family. In the course of medical treatment, a lumbar puncture provided an opportunity for the social worker to assist with related distress and pain through a focused breathing imagery exercise which provided relief from procedure-related pain and validated her internal locus of control. It also led Lilie to re-awaken an artistic side of herself she had temporarily lost to disease and pain. She returned to writing poetry and expressing herself through music. She allowed her children to participate in joint videotaped music therapy sessions during which she wore island dress, sang, and played the drums. Concurrent with her choice to withhold information about the extent of illness, she engaged in shared therapeutic work which created a legacy. Her lyrics included the theme of ‘going to the top of the mountain’ which was understood to be a metaphor for transition and death.

Lilie’s disease spread within her bones. As her body became increasingly fragile so did the structure of her family system as she became less able to orchestrate. As she experienced the fragility of her body and was informed of the risk of fractures she realized emotionally and cognitively that she could not return home and allowed the social worker to contact her sisters, extending the system of support. Jamal continued in his parenting role and asked direct questions driven by his observations of his mother’s increased debility. Jamal’s direct questioning, ongoing psycho-education, and an evolving trust in the social worker and clinical teams created the therapeutic environment wherein Lilie allowed some of Jamal’s questions to be answered.

Lilie suffered a pathological fracture of the humerus while being moved by the staff she had come to trust and depend on as she became more disabled. This crisis event occurred amidst subtle signs of an emerging delirium that had not been recognized and created a crisis of relationship and trust with Lilie reporting to family that staff had hurt her and were withholding pain medications. This accusation caused suffering and anger both in the family system and the professional caregivers who cared deeply for Lilie. As the delirium was recognized, pharmacotherapy was initiated. A family meeting was organized to assist family and staff to consider the influence of the delirium on Lilie’s perceptions and interpretations of the intent and meaning of staff’s behaviours. Lilie’s attribution of intentional harm on the part of staff became better understood when days before she died she spontaneously shared with the social worker ‘woman to woman’ that she had been physically abused by her former husband, an aspect of personal history that had been held private and protected.

Social workers practise in diverse settings and have the opportunity to move palliative care values and processes beyond hospitals and hospices to nursing homes, prisons, and senior centres. While most patients and families grasp the role of physicians, nurses, and chaplains, the functions of social work in health care is often less clear. Palliative care social work skills are a rich opportunity to serve patients, families, teams, and institutions. While social work clinicians may practise from different theoretical models, the work of discovering the individual’s perception of their experience is universal. Rather than informing, ‘starting where the client is’ means that we invite patients and families to share what they see, their perceptions as well as the meaning they attribute to what has happened in their lives. Listening to the views of others is a primary focus for the social work discipline whose impact is anchored in the critical thinking that informs communication and the interventions they choose.

Social work clinicians whether engaged in direct practice, programme planning, teaching, or research now have access to a burgeoning literature, learning resources, competencies, leaders, and advocates to continue the reciprocal process on learning and enriching the shared work of palliative care. Patients and families living with life-threatening illness are amongst the most vulnerable both to our power and to the skills and compassion we bring to their care. This is a compelling ethical and moral mandate to be the best that we can be.

The following aspects of biopsychosocial-spiritual assessment inform and enrich the comprehensive, patient-centred, person-in-environment approach that is essential to palliative care. The elements in Box 4.4.1 are synthesized from Gwyther et al.’s competency document (2005), the National Association of Social Workers Standards for Palliative and End of Life Care (2004), and the Oxford Textbook of Palliative Social Work (Altilio and Otis-Green, 2011). They are followed by Table 4.4.1 which encompasses interventions which reflect the potential range of skills and techniques integrated into palliative social work.