Top Ten Tips Palliative Care Clinicians Should Know About Psychosocial and Family Support

Abstract

Palliative care (PC) is perhaps the most inherently interdisciplinary specialty within health care. Comprehensive PC is delivered by a core team of physicians, nurses, social workers, spiritual care providers, pharmacists, and others who address the broad range of medical, psychosocial, and spiritual needs of those living with serious illness. While PC clinicians are typically skilled in screening for distress, the best path to follow when patients screen positive for psychosocial distress or exhibit mental health challenges may not always be clear. This article brings together the perspectives of experienced social workers practicing across PC and hospice settings. It seeks to identify opportunities and rationale for the integration of palliative social work (PSW) in the provision of quality, person-centered, family-focused, and culturally congruent care for the seriously ill. Increasing recognition of the impact of social determinants of health highlights the critical importance of including PSW if we are to better understand and ultimately address the broad range of factors that influence people's quality of life.

Introduction

People living with serious illness have a broad array of quality-of-life (QOL) concerns that are often best addressed by members of the palliative care (PC) team. While the medical system is usually skilled at uncovering physical distress such as pain and nausea, psychosocial and spiritual concerns may be minimized or missed entirely.

Certainly, PC involvement broadens the scope of symptoms that will be screened for and sources of suffering that may be elicited. Even PC clinicians with screening expertise around issues of mental health, coping, and meaning and purpose may be ill-prepared to appropriately address these complex concerns.

Fortunately, an appropriately resourced, interdisciplinary PC team includes palliative social work (PSW). Palliative social workers (PSWs) are masters-prepared social workers with specialized expertise in addressing the emotional, social, practical, and existential concerns related to serious illness. While many social workers practice in health care settings and collaborate with PC colleagues across and within teams, often there is not broad understanding of the scope of their training and expertise. This article, written by PSWs with inpatient, outpatient, and community experience across academic, community, and veterans affairs settings, seeks to encourage the integration of PSW to maximize the benefits of the interprofessional collaborative team approach to care.

Our field's founder, Dame Cecily Saunders, recognized the critical need to address what she called “total pain” with the insight that the relief of suffering often requires more than the expert management of physical symptoms. Dame Saunders trained as a physician, nurse, social worker, and writer—modeling the value of integrating the perceptions and skills of various disciplines. The increasing recognition of the impact of social determinants of health reminds us that the provision of person-centered, family-focused, culturally congruent care requires a collaborative team approach. Meeting the National Consensus Project's guidelines for the delivery of quality care becomes more attainable when we understand what each discipline brings to the team and also enhances our ability to effectively meet the multidimensional range of concerns confronted by those we serve.¹

Tip 1: PSWs Are Skilled in Having Discussions Around Advance Care Planning and End-of-Life Conversations and PSW Involvement Increases the Frequency of These Discussions and Documentation in the Medical Record

As core members of the interdisciplinary team providing care to patients, particularly at end-of-life (EOL), PSWs play a large role in promoting advance care planning (ACP) discussions.² As noted in a recent systematic review, social workers generally consider being a part of ACP discussions as an integral part of their role.³

According to the National Association of Social Work Standards for Palliative and End-of-Life Care,⁴ a social worker's full scope of practice includes advocacy of client/client system choices, preferences, values, and beliefs in palliative and EOL care. Because a tenet of social work practice is building a therapeutic relationship, PSWs work hard to earn the trust and respect of patients, who then feel more comfortable sharing intimate details about values and goals.⁴

Although there are high levels of health social worker (HSW) involvement in ACP discussions in all settings, frequency of completion of ACP documentation varies widely across settings. Hospice social workers and community-based PSWs were found to increase advance directive (AD) documentation rates more than hospital-based HSW in part due to strong interdisciplinary dynamics within hospice and palliative settings.⁵ Additionally, HSW introduce ACP more frequently and spend 30–60 minutes per day on the topic,³ as compared with physicians and nurses who spend, on average, <30 minutes in these discussions.^3,6

Despite this discrepancy, HSW still feel this time is inadequate given the nuances of these conversations.⁷ It is important to note that many of the preferences being outlined in ACP documents elicit specific treatment choices and may warrant the input of a medical provider for detailed explanation of complex medical options.¹ PSW support of ACP communication provides significant benefit to patients by promoting their voice and encouraging therapeutic relationships that are able to elicit patients' values and preferences.

Tip 2: Trauma-Informed Palliative and EOL Care, Like Universal Precautions or Patient-Centered Care, Is Good Practice and Includes Strategies All Disciplines Can Adopt

In the United States, 61% of men and 51% of women reported exposure to at least one lifetime traumatic event.⁸ The Substance Abuse and Mental Health Services Administration (SAMHSA) describes trauma as resulting from “an event, series of events, or set of circumstances experienced by an individual as physically or emotionally harmful or life threatening with lasting effects on the individual's functioning and mental, physical, social, emotional, or spiritual well-being.”⁸ Given the prevalence of trauma, some advocate adopting medicine's universal precautions paradigm to presume risk for trauma exposure.⁹

Interdisciplinary teams in palliative and EOL care, including hospice, are well positioned to integrate trauma-informed care into their work. Many patients and family members have experienced intolerable side effects, declining health, or intensive care unit stays at different stages of their illness, all of which could also be experienced as traumatic.¹⁰ Every clinician is able to integrate trauma-informed care principles into their interactions with patients and families, including enhancing safety, trust, choice, collaboration, empowerment, and recognition of and responsiveness to cultural, historical, and gender issues.^8,11 Strategies which add to a sense of safety and trust range from a personal awareness of one's tone of voice, body language, and power differential to asking permission before entering the room or handling the television remote on a patient's bed.¹²

There are tools and resources available to help teams and programs assess current practices of trauma-informed care. Best practices around screening tools, disclosure about trauma, and interventions to address trauma-related symptoms will depend on the individuals involved, the setting, and the organization.^11,13

Tip 3: Knowledge and Utilization of Developmental Concepts of Death Are Key in Supporting Families and Their Children

Communicating with and supporting a child who may be dying or experiencing the death of a loved one often presents challenges and increased stress for families and clinicians. The role of the PSW includes providing clinical support and guidance to families and their children in conjunction with the interdisciplinary team during EOL.

A child's concept of death typically hinges on developmental age (Table 1). Infants and young toddlers may not have an understanding of death but are aware of their environment and may react to emotions, separation, change in schedule, and/or lack of consistency. School-age children start to learn that death is irreversible but may not relate death to themselves. Older children begin to understand that death is final, universal, irreversible, and inevitable.

Table 1.

Pediatric Developmental Concepts of Death

Age range (years)	Primary concepts of death	Palliative care interventions
0–2	No cognitive understanding of death	Focus on physical comforts and consistency of care providers and environment, when possible.
3–5	Death is not permanent	Use concrete language and avoid euphemisms when discussing death. Provide assurance that illness is not the fault of a child.
6–9	Evolving concept of death	Provide honest, clear details as child request. Encourage parent/caregiver to follow the child's lead in providing information.
10–12	Death is permanent	Maintain activities and connections with friends. Provide choice to child around participation in care of loved one (i.e., visiting parent in hospital).
12–18	Understands implications of death	At this stage of development, emotions may be stronger; allow expression of the emotion. Consider additional resources (i.e., counselor, bereavement groups). Encourage peer connections and daily routine. Explore adolescent desire to participate in caregiving and support their individual choice.

Adapted from Himelstein et al.⁴⁶

Developing a mature concept of death also relies on a child's previous experience with death, whether that of a family member, friend, or even pet; as well as, how their caregivers have or have not communicated about death as part of the life cycle.¹⁴ Using clear, honest, age-appropriate, and direct words instead of euphemisms like “sleeping” or “gone” supports a child in their ability to understand the reality and finality of death and in their continued grieving process.¹⁵ When a child has received inaccurate or incomplete information about death, their grieving and coping processes may be hindered.¹⁶ PSWs are able to provide caregivers with age-appropriate language and expectations in understanding how a child may cope with death. We expect that children will have varying emotions and cope through play.

When a PSW or any clinician is supporting children and/or their families in conversations about death, it is important to reflect on one's own thoughts about dying and be honest about your comfort in having these conversations.¹⁷

Tip 4: PSWs Have a Specialized Skill Set and Training to Provide Assessment and Interventions to Patients with Mental Health Difficulties Amid Serious Illness

PC providers commonly encounter people who have mental health concerns as the stress of illness often exacerbates existing psychosocial and/or psychiatric problems. In many interdisciplinary teams, all members are vigilant and feel comfortable providing comprehensive screening of pain and symptoms along with psychosocial and spiritual needs. Screening may uncover the need for significant expertise in mental health and wellness, complex family systems, and psychiatric illness. PSWs have the skill set and training to deal with these challenges.

Systems work is fundamental in social work training and is critically important in addressing complex medical and family challenges. The field of social work provides expert training in assessment, diagnosis, interventions, and treatments in mental health. Part of this work includes, but is not limited to, assessment of ego functions, defenses, judgment, reality testing, diagnosing and treating depression, anxiety, trauma, and underlying mental illness. As noted in the most recent National Consensus Project for Quality Palliative Care Clinical Practice Guidelines under Domain 3, PSWs are specifically identified as the professional to assess and respond to a range of mental health issues.¹ Social Work Hospice and Palliative Care Network (SWHPN) recently identified the specialty work of PSWs by creating an advanced specialty certification called the Advanced Palliative and Hospice Social Worker-Certification (APHSW-C) to recognize the expert skills and unique knowledge of PSWs.¹⁸

Tip 5: Time-Intensive Integrative Interventions Such as Guided Imagery, Mindfulness, and Cognitive Behavioral Therapy Can Be Led by PSWs and Have Been Shown to Lessen Anxiety and Depression in Patients and Caregivers

Anxiety and depression are common among those with life-limiting illnesses as well as their caregivers.¹⁹ The level of anxiety or depression varies based on an individual's diagnosis, stage of treatment, or physical symptoms. Additionally, fears surrounding how an illness may change the course of life or impact independence may trigger or exacerbate anxiety and depression.²⁰

Patients and caregivers are often assessed and transitioned to an outside mental health professional (MHP) to treat psychological or emotional issues, such as depression, anxiety, or prior mental health problems. While collaborating with an outside MHP is valuable,²¹ PSWs are trained to assess and provide therapeutic interventions to address anxiety and depression. PSWs are trained to view the patient as a whole, including past experiences, current supports, and future goals. PSWs are well positioned to bridge the gap between mind, body, and spirit through facilitation of integrative practices, such as mindfulness, guided imagery, and cognitive behavioral therapy.

Guided imagery is a structured meditative activity using mental imagery to facilitate relaxation.²⁰ Guided imagery has been shown to create a psychological response promoting an overall feeling of well-being, a decrease in stress response, and provide additional comfort and a sense of peace to individuals and caregivers.²² A closely related complementary therapy is mindfulness meditation. This practice encourages patients and caregivers to focus on the present moment, often a difficulty for those experiencing a life-limiting illness.^23,24

Finally, cognitive behavioral therapy is a well-known therapeutic approach that brings awareness to the connections between thoughts, behaviors, and emotions with the intent to change thought patterns that might occur when a person is experiencing distress.²⁰ Providing patients and caregivers with these coping strategies can decrease levels of anxiety and depression and empower both groups to manage the uncertainty of living with a serious illness.

Each of these interventions is within the expertise of PSWs and are able to be utilized in a variety of PC settings: inpatient, clinic, and or the home. These are skills that patients and caregivers can learn and employ throughout their lifetime. While there are instances when patients and caregivers benefit from seeing an outside MHP, PSWs use their clinical skills for ongoing assessment of distress, to collaborate with the MHP, and intervene when patients or their caregivers are experiencing anxiety and depression as a result of an evolving life-limiting illness.

Tip 6: By Connecting Patients to Community Resources, Assisting with Care Planning, and Problem Solving Around Basic Living Needs, PSWs Establish Rapport That May Lead to Deeper Conversations About Psychosocial Issues, Including Goals of Care and Existential Distress

Engaging in conversations exploring goals of care or treatment options can be difficult if a patient is homebound or has limited transportation to medical appointments. PSWs have the skills and knowledge to triage practical needs and connect patients to community resources such as transportation, food, housing, and assistance with activities of daily living.

While providing help with basic human needs, PSWs establish authentic and trusting relationships with patients and families, who come to view them as reliable and approachable.²⁵ Through these problem-solving interactions, PSWs become team members that patients or caregivers will contact as subsequent issues emerge. Successful linkage to community resources often leads to a decrease in anxiety for patients, allowing them time and space to focus on their priorities as they face serious illnesses.²⁶

In addition, during the course of helping patients address a transportation or housing problem, PSWs often find openings to talk about goals of care (e.g., “If getting out of the house is difficult now, I'm worried that with an evolving illness things may get worse”). The relationships forged through problem-solving experiences create opportunities for a patient to consider weighty questions about benefits and burdens of treatment, and a trusted PSW who has solved basic resource problems is a reassuring presence for patients and families during goals of care conversations with the treatment team.

Tip 7: Grief Is Common and Occurs at Any Point Along the Illness Trajectory; Patients and Families Benefit When Social Workers Have Expertise in Performing Grief Assessments, Normalizing Grief Responses, and Providing Support for Anticipatory Loss, Post Death Bereavement, and Complicated Grief Responses

The loss of a loved one causes a broad range of completely normal grief reactions. While most people are able to cope and adapt to loss, some experience high levels of distress that require intervention. Health care professionals help by recognizing that normal grief, also referred to as uncomplicated grief, includes a wide range of feelings, thoughts, physical sensations, and behavioral changes that are common after a loss. Psychoeducation provides assistance in normalizing the grief experience.²⁷

With the involvement of both the patient and loved ones, a dynamic plan can be created to respond to a patient's needs during the disease progression as well as to the needs of identified family before, during, and after a patient's death.¹ Cultural and spiritual aspects, external stressors, history of loss, and perceived pre-existing supports are all relevant considerations when developing the plan.²⁷

Different from the emotions of grief, bereavement is the state of loss a person experiences after the death of a significant person or loss of an attachment figure.⁴ While many benefit from bereavement information, support, and counseling, particular attention should be paid to those who are at high risk for mental disorders, substance abuse, depression, and suicidality. Although less common, 10%–20% of those bereaved struggle with complicated grief and may ultimately need more specialized care.²⁸ When assessing and referring, it is essential to recognize the uniqueness of the grief experience. Responses to loss vary widely and a one-size-fits-all approach can be harmful.²⁷

Tip 8: Patient Outcomes Are Improved When PSW Participate in Family Meetings with Complicated Interpersonal Dynamics, When Eliciting Patients' Goals and Values, or When Discussing Diagnosis, Treatment, or Worsening Prognosis

Family meetings are one of PC's primary interventions.²⁹ Having an interprofessional, collaborative team approach to care offers the best chance to address the multiple sources of distress associated with the symptoms and stresses of serious illness.¹

Family meetings are used to inform patients and their loved ones about QOL concerns, changes in health, assessing an understanding of treatment options, prioritize care preferences, and identify shared goals of care.³⁰ Because of the inherent complexity of family meetings, routine inclusion of PSWs is helpful for a multitude of reasons: to observe family and team dynamics and intervene when indicated; address cultural concerns; provide support to patients/caregivers as they cope with transitions in care and move through the trajectory of their illness.

The inclusion of PSW is especially important when addressing issues related to caregiver strain, medical literacy, substance use, resource limitations, anticipatory grief, ACP, navigation of the health care system, mental health, suicidality, trauma history, and other high-risk factors.³¹ Interprofessional family meetings that include social workers are associated with improved patient outcomes, including an overall reduction in concerns, increased confidence in dealing with the issues raised and, importantly, a greater number of care needs being met.³²

Tip 9: Expectations, Accountability, and Moral Distress Are Often Not Felt in the Same Way Across Disciplines, So PSWs Can Help Foster an Environment of Psychological Safety Within the PC and Broader Medical Teams to Allow for the Sharing of Feelings, Thoughts, and Diverse Opinions

Expectations, accountability, and moral distress may be viewed differently across disciplines. These varied perceptions may color team dynamics yet are often unrecognized. Clinicians sometimes act as if practicing in a cohesive team assumes coherence in opinions and world views, an assumption that has potential to decrease the richness of deliberation essential to the work of PC.³³ This awareness of “difference”—often unspoken—may be realized by a PSW who brings a sensitivity to environmental context, group, and power dynamics; as well as respect, by virtue of their training, for origin stories and narratives.^34,35 While PC brings clinicians together in a shared purpose, each member embodies personal and professional histories, education, and codes of ethics; so, within this common vision, there are often differences in role and worldview.^36,37

For example, PSWs are as interested in process as they are in outcomes which distinguishes their training and listening. They may honor an authentic, humane, and ethical process even when the outcome is not as expected or hoped for. This respect for process and outcome can even provide solace for a care team when, in spite of clear explanation and recommendations, patients' or families' choices are for potentially nonbeneficial care. Fostering environments of psychological safety³⁸ to express, accept, and nurture the sharing of feelings, thoughts, questions, and diverse opinions, while a collaborative effort replicates the process social workers intend to create in family meetings.

Tip 10: Thorough Assessment and Interpretation of Psychological, Cultural, and Spiritual Needs at the EOL Is Necessary to Enhance Informed Decision Making and Identification of Patient and Family Priorities

PSWs are experts at eliciting what is truly important to those living with chronic illness or who are nearing the EOL. Research has shown that addressing goals of care and what gives meaning to an individual's life are linked with higher quality outcomes and care.^39,40 By taking a holistic, interdisciplinary view and involving social workers early in the assessment and intake process, teams providing EOL care have reported more team cohesion and increased patient and family satisfaction.⁴¹

Social workers often work with individuals who are vulnerable or have experienced marginalization through oppression and racism. By practicing and encouraging cultural sensitivity, social workers aim to build trust with patients from diverse groups and cultures. Culture includes, but is not limited to, the following elements:

gender

age

sexual orientation

gender identity and expression

religious and spiritual identity

physical and mental ability

language

nationality

immigration or refugee status

socioeconomic status

education and literacy

These elements all intersect.⁴² Culture may also interact or conflict with spiritual and religious beliefs, causing psychological distress.⁴⁰

By understanding patients' and families' unique spiritual and cultural journeys, PSWs honor diverse populations and their customs, rituals, and connection to community.⁴³ Effective PSWs bring their understanding that groups are distinguished by a set of rules that shape values, beliefs, habits, patterns of thinking, behaviors, and styles of communication.⁴³ Understanding that these values shape a patient's worldview is key to a PC team's ability to elicit and honor care preferences at the EOL.⁴⁰

In addition to cultural identity, in the absence of a PC team-based spiritual care provider, PSWs may be the most appropriate team member to assess spirituality needs. The World Health Organization has identified spirituality, the way individuals seek and express meaning and purpose in their lives, as an important aspect of QOL^43,44 and as a core dimension of health that intends to sustain distressed individuals.⁴⁴ In addition, religious and spiritual practice often act as a protective factor and increase pain tolerance.⁴⁵

PSWs can elicit any strongly held beliefs by asking questions related to “hope” instead of “faith” or “beliefs.” Such early rapport building establishes an emotional connection between patients and their PC team. Addressed with compassion, the patients are better identifying what is important to them as they may be approaching EOL. As the care team learns of these values, they endeavor to ensure that care incorporates an all-encompassing sense of their personhood. By eliciting goals and refocusing the conversation to address what truly matters to the patient, the team seeks to relieve both psychological suffering and total pain, offering peace for those with serious illness or at EOL.⁴⁵

Conclusion

PC teams attend to the physical, psychosocial, and spiritual concerns of those they serve. The interdisciplinary nature of PC prepares teams well to meet these diverse needs. Fortunately, many teams have experienced PSWs who help patients with a variety of needs ranging from assistance with basic physical needs to clinical interventions related to psychosocial distress, anxiety, depression, complex medical decision making, grief, and bereavement. Far beyond simply being nice people, PSWs have the training, expertise, and tools to assist in the delivery of quality person-centered, family-focused, and culturally congruent care. It certainly takes a village to provide specialty PC and understanding the background and expertise of all team members will improve the care PC teams provide to our patients.

Footnotes

Acknowledgment

The authors wish to thank Anessa Foxwell for her support and guidance, which greatly enhanced this article.

Funding Information

The authors received no financial support for the research, authorship, and/or publication of this article.

Author Disclosure Statement

No competing financial interests exist.

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