Caregiver Distress: An Interdisciplinary Approach to Patient Care

Abstract

Background: Advanced cancer severely impacts the lives of patients as well as their caregivers and loved ones. The burden of the caregiver role often results in significant distress, especially near the end of life. Identifying ways to support patients and caregivers is an important focus of palliative care. Objectives: To report two cases depicting the negative impact of caregiver distress on patient care and end-of-life decision-making, requiring the collaboration of an interdisciplinary team. The cases outline interdisciplinary approaches to patient and caregiver support during this transition. Conclusions: Medical facilities providing cancer care should have structures and processes capable of assessing and managing caregiver distress. Interdisciplinary teams are needed to identify a process of supporting caregivers to minimize negative impacts of emotional dysregulation on patients, their caregivers, and staff.

Introduction

According to the most current data, the Centers for Disease Control and Prevention (CDC) reported 1 777 566 new cancer cases in 2021 and 608 366 cancer deaths in 2022 in the United States. ¹ Despite advances in earlier detection and treatment, a cancer diagnosis still significantly impacts the lives of patients and their loved ones. The growing incidence of cancer results in more individuals assuming caregiving roles. ²

Family members comprise the majority of caregivers, providing essential aid in meeting patient needs while navigating health care system complexities. ³ In this role, which can arise abruptly and extend for several years, caregivers assume many duties: medical and financial decision-maker, patient advocate, and care provider. ⁴ They face significant physical, social, and emotional distress, and their poor prognostic understanding and a patient’s poor symptom management and functioning exacerbates this distress. ⁵

Patients and caregivers experience high levels of anxiety and depression, and caregiver distress can influence their perception of patient distress at end-of-life.^6-8 Functional independence and caregiver burden remain predictors of patient anguish which can exacerbate caregiver suffering. ⁹ Lower functional independence increases reliance on caregivers, potentially impacting patient perceptions of caregiver burden and thus, their levels of distress. Interventions reducing patient distress improve patient health status, benefiting both patient and caregiver. ¹⁰ An interdisciplinary team approach, including nurses, palliative medicine clinicians, psychologists, social workers, chaplains, and volunteers provides benefits to patients and caregivers. A team-focused approach to caring for patients and caregivers improves psychological distress, caregiver burden, social quality of life, spiritual distress, vigor, and fatigue for caregivers.^11,12 Research examining the impact of caregiver-focused interventions on patient outcomes provide mixed results, with some studies showing benefits in symptom management, rehabilitation needs, and psychological functioning, and others finding no differences in these and other outcomes. ¹³ The following cases highlight the relationship between patient and caregiver distress at end-of-life, factors influencing their suffering, and the impact of an interdisciplinary approach to care on patient and caregiver outcomes.

Case Descriptions

Case 1: Mr. S

Mr. S, a middle-aged man with lung cancer, was referred by Emergency Medicine to Supportive Care (consisting of medical providers and a psychology team) for management of multiple symptoms, including pain, nausea, loss of appetite, anxiety, and family distress. Collaboration with Emergency Medicine shifted to Hospital Medicine upon hospital admission, and communication was ongoing between Supportive Care, Supportive Care Psychology, Hospital Medicine, and other teams.

Opioid treatment resolved Mr. S’s pain, but he presented with expressive aphasia and shortness of breath, worsened by health discussions. He developed episodic confusion, altered mental status, and restlessness, initially refractory to quetiapine, haloperidol, and olanzapine. He experienced auditory hallucinations, raising concerns among his family who expressed openness to Supportive Care Psychology for Mr. S and themselves.

With psychology, Mr. S communicated his desire to prioritize quality of life and showed little concern for himself, instead focusing on his family’s wellbeing. Psychology introduced and offered a guided imagery exercise for anxiety, and he declined interest. His wife grew increasingly anxious about his end-of-life status and the implications of his death on her life.

Due to worsening cognitive impairment, the Hospital Medicine team deemed Mr. S unable to make medical decisions, and Supportive Care was immediately contacted to engage Mrs. S in a goals of care/advanced care planning (GOC/ACP) discussion. A severe emotional reaction abruptly ended the visit. Mrs. S previously expressed discomfort with Supportive Care introducing themselves as “Palliative Care,” though symptom management was the focus of the initial visit. Supportive Care opted to collaborate closely with the primary team regarding GOC/ACP matters but defer further GOC/ACP discussions with the family to the primary team. Supportive Care continued providing symptom management and contacted Supportive Care Psychology to provide immediate services.

With psychology, Mrs. S expressed complex anticipatory grief and anxiety regarding her new decision-making role. She noted a personal mental health history and pattern of emotional repression in her and Mr. S’s relationship that exacerbated her emotional distress. She endorsed blame and guilt over not doing more for Mr. S, despite her efforts in his care, and she grappled with spiritual distress, noting unbelief in God if Mr. S were to die. Psychoeducation about delirium and end-of-life care was provided, and previous end-of-life discussions with Mr. S were revisited to facilitate decision-making. Initially, Mrs. S found the visit “unhelpful,” but after the psychologist initiated a conversation about ways to better support Mr. S and his family, she expressed gratitude with a hug before returning to Mr. S’s bedside.

As Mr. S’s health further declined, his primary team conducted another ACP visit, and family maintained full code status. Respiratory distress prompted an ICU transfer with intubation, and Mr. S developed shock, requiring pressors. Supportive Care continued providing symptom management, and Spiritual Care provided emotional and spiritual support to the family.

During ACP discussions, Mr. S’s family acknowledged his low likelihood of meaningful recovery and his wishes for “a quick death.” Mrs. S consented to do-not-resuscitate (DNR) code status, and his family chose to withdraw pressors and opt for compassionate extubation. Spiritual Care supported the grieving family at the time of death, and they reported acceptance of Mr. S’s death and a sense of enhanced social and spiritual support.

In this case, interventions provided to Mrs. S included medical education, psychoeducation, rapport-building, supportive care, and spiritual care. Due to system limitations, individual psychotherapy was not provided to Mrs. S. Despite her difficulty accepting Mr. S’s impending death, interventions were adequate and preserved her relationship with the Supportive Care team and facilitated her decision-making at end-of-life to reduce Mr. S’s suffering.

Case 2: Mrs. A

Mrs. A, an older woman with metastatic pancreatic cancer, was referred by Emergency Medicine to Supportive Care for symptom management and GOC/ACP discussions at the beginning of a prolonged hospital admission. Once admitted, the interdisciplinary team included medical and nursing providers, a psychologist, a chaplain, and an integrative medicine clinician who communicated about Mrs. A’s functioning.

Initial Supportive Care efforts addressed pain, constipation, insomnia, and deconditioning, with Mrs. A demonstrating psychologically appropriate coping as assessed by Supportive Care Psychology. Her symptoms worsened, with increased fatigue, appetite loss, pain, and altered mental status responsive to opioid rotation. Integrative therapies provided additional relief, though symptom burden persisted.

As treatment continued, discussions related to GOC and the transition of Mrs. A’s care began. Mr. A became increasingly anxious and more involved in Mrs. A’s care, inquiring often with the multiple specialties about symptoms, test results, and treatment options. Mrs. A reported new anxiety regarding her health and its impact on her family, expressing a desire to organize her affairs for their future security. Psychoeducation about anxiety was provided by Supportive Care Psychology, and olanzapine was prescribed by Supportive Care.

After medical procedures, confusion, nausea, and drowsiness developed and progressed into acute distress with delirium and pain. Mrs. A requested medication to die and prayer for God to take her and end her suffering. Supportive counseling and validation were provided, and Psychiatry and Social Work were immediately consulted per institutional protocol.

With increasing symptom burden, Mrs. A expressed readiness to die, and symptoms disqualified chemotherapy as a treatment. Her family remained hopeful for enough improvements to pursue Eastern medicine, though they accepted information about Hospice and Palliative Care. They requested time for family discussions about end-of-life care and maintained full code status.

Mrs. A discussed death and end-of-life wishes with psychology, indicating a desire for treatment and preference for limited suffering if her condition deteriorated. She acknowledged comfort with dying and explored initiating end-of-life conversations with family. Mr. A returned to bedside, inquiring about discussions with psychology. He was included in some discussions with psychology and Mrs. A throughout the admission.

Mr. A explored treatment options outside of the institution, but as Mrs. A grew weaker, he focused on supporting her end-of-life wishes, choosing to discontinue his pursuit of alternative treatments. Mrs. A reported peace and no emotional distress. Her comfort and functioning remained goals of her care, and family agreed to transfer her to the Palliative Care Unit where they played religious music.

As Mrs. A’s communication dwindled, Mr. A perceived slight movements as attempts to communicate and encouraged others to engage her. As her final days approached, Mr. A questioned aspects of Mrs. A’s care, advocating for specific interventions he believed could improve chances of recovery. Providers from multiple specialties (Supportive Care, Psychology, and Spiritual Care) consulted with one another and encouraged the creation of a peaceful environment, and a chaplain and psychologist provided daily visits.

Mrs. A died peacefully, surrounded by her family. Her husband reflected struggling with denial about her health status until her death forced his acceptance. During Mrs. A’s admission, interventions provided to Mr. A included medical education, psychoeducation in visits with Mrs. A and psychology, family therapy with Mrs. A, supportive care, and spiritual care. They were adequate and allowed for processing and prioritization of Mrs. A’s wishes at end-of-life.

Discussion

Cancer outcomes vary due to many factors, and balancing treatment and quality of life remains an important goal. ¹⁴ Given significant morbidity, mortality, and treatment-related adverse events, supportive care for patient symptom management, psychological support, and spiritual guidance proves essential in cancer treatment. ¹⁵ Furthermore, identifying caregiver challenges can improve caregiver functioning and assist providers in maintaining patients’ quality of life and dignity through end-of-life due to their interconnected relationships.^16,17 Therefore, an interdisciplinary approach that includes primary and ancillary teams may provide optimal outcomes for patients and caregivers by addressing the needs of both.

In the cases described, the caregivers exhibited significant distress in navigating their loved one’s symptom burden and identified declines in mental status and physical functioning as the catalyst to assuming the medical decision-making role. Given her mental health history and relationship dynamics, Mrs. S expressed uneasiness in medical decision-making. In contrast, Mr. A’s concern for his wife drove his increased engagement in her care. Communication regarding patient prognosis and health status proved beneficial in facilitating caregiver understanding of their loved one’s care and in empowering them to actively participate in care and decision-making. Daily rounds, ongoing discussions (about ACP, end-of-life care, and the possibility of meaningful recovery), and communication between the primary and ancillary care teams contributed to the achievement of these goals and are supported by research on communication.^18,19

During the hospital admissions, emotional distress developed for both patient and caregiver due to their interconnected relationships which warranted assessment of functioning and coping.^16,17 In response, both psychology and spiritual care services were initiated. Mr. S’s emotional distress exacerbated his physical symptoms while Mrs. A’s physical symptoms increased her emotional distress. Both patients reported concerns about their families and a desire to organize their affairs to ensure financial stability for family after their deaths. Despite asking to die, Mrs. A was not suicidal and did not have intent or plans to end her own life, though care should routinely assess suicidal ideation. ²⁰ Caregiver distress resulted from the tenuous health status of their spouse, decision-making difficulties, and increased responsibilities. Both spouses endorsed guilt about their loved one’s health circumstances and acknowledged their desire to exhaust all treatment options before pursuing comfort measures. Mrs. S perceived Mr. S’s declining health and death as a personal failure, and Mr. A did not want to “give up” on his wife. Denial can impact patient care by prolonging suffering; however, incorporating evidence-based psychosocial interventions, such as psychoeducation, behavioral strategies, and value exploration with patient and caregiver, can limit suffering and allow patients to die with dignity.^21-24

Spiritual distress manifested in both cases. Mrs. S reported her faith being dependent on Mr. S’s outcome, though his family received little spiritual support until his death approached. During a period of unmanaged symptom burden, Mrs. A petitioned God to relieve her suffering, and she received spiritual care throughout her admission. Religious coping can present as adaptive or maladaptive, with individuals garnering strength from faith or having difficulty trusting in God. Some patients wish to explore eschatological beliefs related to the afterlife which can promote peace related to death and dying. Mrs. A engaged in these discussions with psychology and spiritual care, and she utilized spiritual coping strategies. Though Mr. S and his family received and benefitted from chaplain visits at the time of his transfer to the ICU and until his death, Mrs. S’s negative religious coping and her obvious spiritual distress may have benefitted from earlier spiritual care interventions. The spiritual interventions provided to the families show consistency with themes explored at the end of life for patients with cancer.^25,26

In both cases, the interdisciplinary team maintained ongoing communication with one another and with the patient and family to provide the best care. During admissions, the Emergency Medicine team initiated person-centered care by consulting the Supportive Care team to manage physical symptom burden and provide psychological support for anxiety and other emotional reactions in the patient and caregiver. Once the transfer of care to the Hospital Medicine team took place, additional specialties joined the interdisciplinary team to provide greater whole-person care. Having an identified leader of the IDT ensured ongoing and harmonious teamwork to promote the most ethical and efficient care for the patients and their families. The effective interdisciplinary team incorporated mutual respect, collaborative communication, a shared goal, openness to learning, and support for one another.

Throughout the admissions, all teams maintained ongoing communication with one another through multiple modalities. As concerns arose after initial consultation, prompt notification to the appropriate team of changes in patient and family status ensured timely and appropriate interventions. Rapid and effective communication and support for patients and caregivers requires this integrated team effort to prevent duplication of or confusing recommendations by independent disciplines. The success of these integrated teams remains the most significant current challenge for interdisciplinary palliative care. ²⁴

The manifestation of physical pain often coexists alongside other sources of distress, such as spiritual, psychological, financial, and family suffering. This may include preexisting or new psychiatric concerns, personality intricacies, and discordance between family and clinician. Thus, the IDT is required not only to meet the medical and physical needs of patients but also to properly and responsibly diagnose and treat the personal components of suffering, resulting in complex, whole-person care. ²⁴

Having interdisciplinary teams, especially in Palliative Care as a patient nears end-of-life, improves symptom burden, QOL, end-of-life metrics, and cost of care, whereas this care provided by only one or a primary team has not shown beneficial.^2,3 The large team provides an opportunity for a patient or caregiver to build relationships with one or more team members, which promotes the development of trust and a safe provider to confide in as they navigate their care. This trust usually develops across multiple visits with palliative care team members and by the team demonstrating the ability to relieve some physical symptom burden. In both cases, relationships were built with multiple members of the interdisciplinary team and with at least one member of the Palliative Care team which allowed for improved communication and acceptance of end-of-life.

Often, palliative care teams face perceptions of not being useful at service initiation, as patients and caregivers often associate the team with bad news and end of life. ²⁷ Therefore, supportive and palliative care teams need to maintain awareness of this reality and educate referring teams about the impact of less optimistic messages and psychoeducational interventions for negative perceptions of the team delivering news or having difficult conversations. In the case of Mr. S, his wife exhibited negative perceptions of palliative care which may have contributed to her reaction during the initial GOC/ACP discussion. Through rapport-building, processing, and education with Supportive Care, the relationship was salvaged.

The dynamic and complex communication process with patients and caregivers at end-of-life often highlights their struggle to accept the reality of no more cancer treatment. This may require palliative care teams to navigate supporting ICU and intubation as in case 1 or periods of seeking alternative therapies such as in case 2. Our palliative care team prioritized building rapport with and providing services to the suffering caregiver while trying to prevent increased suffering in the patient, though these services often are not legitimized due to system limitations.^24,28

In both cases, the patient expressed severe distress about the wellbeing of their caregiver, prioritizing family needs over their own. The caregivers’ limited acceptance of patients’ impending death precluded specific discussions, such as patients’ preferred location of death. Given potential distress levels at end-of-life, the increased burden of care and loneliness associated with a home death may prove unbearable for some caregivers and patients, and patients dying from advanced cancer identify limiting the burden on the caregiver as a higher priority in their care than dying at home. ²⁹

Due to resources and the large IDT at our institution, the needs of the patients and caregivers in both cases were adequately met. Unfortunately, not all institutions have such luxuries. Studies show there often are not enough team members to meet the needs of caregivers (i.e., social workers to connect patients and caregivers with supports), and institutions – and the medical system as a whole – do not facilitate the delivery of supportive services for caregivers, as this falls outside of established delivery processes, and a precedent for the delivery of services may not exist. ²⁸ A significant barrier for institutions lies with finances, as services are not adequately funded, or institutions receive no reimbursement for the services by insurance companies. ³⁰

Given that Palliative and Supportive Care teams maintain an important role on IDTs, stakeholders should consider all teams’ contributions in the development of institutional processes and budgets, as patient care often proves complex, requiring a high level of care, and necessitating institution and system resources. One fundamental aspect of care lies not with the patient, but with caregivers. In both cases, interdisciplinary team members provided whole-person care to patient and caregiver, despite system limitations in the provision of services. This fostered improved caregiver understanding of their loved one’s needs and empowered them to actively participate in care and decision-making.^18,19 Support for caregivers often remains an afterthought, taking less priority over patient health status and financial considerations. Though many barriers preclude caregiver support in cancer centers, for both Mr. S and Mrs. A, the collaborative approach to whole-family care proved instrumental in achieving a more peaceful end-of-life and caregiver peace at the time of death.