Psychosocial and spiritual distress

Forms of psychosocial distress associated with cancer care

Current cancer care practices recognize the multidimensional distress and pain (psychological, physiological, financial, and spiritual) associated with cancer diagnosis and treatment. Cancer patients undergoing RT suffer emotional distress, grief, financial burden, and difficulty in coping. ^, However, significant evidence indicates most newly diagnosed cancer patients, those with recurrent disease, or even those with terminal diagnosis gradually adapt to these crises. Adaptation begins when patients manage to incorporate their diagnosis or their disease progression into their daily lives and effectively address problems or concerns created by their changed health status.

Oncology research conducted in an outpatient radiation oncology environment found that between 22% and 35% of RT patients report clinically relevant psychological distress. ^{, ,} One-third of cancer patients undergoing RT reported that their psychosocial care and well-being could have been improved. The most frequently reported deficiencies were communication of information, emotional and spiritual support, management of physical symptoms, and involvement of friends and family. ^, In addition, financial and legal concerns have been identified by many cancer patients as negatively affecting their quality of life. ^, Financial concerns related to the cost of medicine are a major issue for patients with cancer. For example, lower socioeconomic status and lower educational attainment were associated with poorer adaptation to the diagnosis of cancer. These patients also experienced increased feelings of isolation, less control over their lives, and greater likelihood to report psychological symptoms.

Frequently, unmet psychosocial needs generate psychosocial distress that may manifest in symptoms of depression and anxiety, ^{, , ,} emotional upheavals, and cognitive impairment. ^, If unattended, psychosocial distress can result in poor outcomes ^, through impeded treatment adherence and impaired health-related decision making. ^, In one Australian study, 75% of cancer patients with clinically relevant anxiety and/or depression did not receive counseling or psychological treatment.

In the radiation oncology setting, psychosocial distress affects the level of self-management, length of hospital stays, use of needed services, sleep disturbance, and poor adjustment. ^, Studies have found that patients who are younger, female, and perceive that their treatment aim is palliative may be more likely to suffer from elevated levels of psychological distress. ^{, ,} It has also been suggested that other demographic factors such as ethnicity may influence rates or levels of distress. ^, Similar correlations can be found between psychosocial distress and family functioning, problem-solving skills, symptoms, and quality of life (QoL).

Clinical practice shows that the less support patients received during the early stages of their disease, the more difficult the transition to palliative end-of-life treatment. ^, When receiving palliative RT, psychosocial stress can be increased by a heightened sense of mortality, uncertainty about the future, ^, challenges with symptom management, ^{, ,} and disruption to family roles. For weaker patients who have trouble with ambulation, the logistics of getting to outpatient appointments can cause stress. Starting palliative end-of-life RT can be an extremely difficult step for most patients and families because this is the beginning of a stage when losses and needs are the greatest. ^,

Implications of psychosocial distress on RT planning and delivery

Psychosocial distress can create barriers to efficient RT planning and delivery. The shock and grief associated with a cancer diagnosis or recurrence may detract from the ability to understand fully the implications of the illness and to make rational decisions regarding the RT treatment plan. ^, Delayed decision-making in palliative RT adds stress on providers who work urgently and rapidly to treat patients in a timely fashion. Patients who cannot adapt to their clinical circumstance are at risk for interruptions in their RT due to a multitude of psychological and social problems that may not manifest to the clinical team until the patient reaches an observable crisis event during RT.

Additional psychosocial barriers to palliative RT include the impact on caregivers who contend with the emotional burden of care, facing limited coping skills and challenges in coordinating care. The clinical outcome for patients receiving palliative RT may not always be evident. Treatment can include symptom resolution with short-term recovery or symptom control with continued decline to the end of life. From a psychosocial perspective, clinical practice should include a safe balance for ongoing conversations on goals and expectations of care as published data on treatment outcomes emerge. ^{, ,}

The emotional toll and rapid response protocol can also make service delivery to metastatic and advanced-stage cancer patients more complicated. For many radiation oncologists, it may be difficult to move from curative treatment measures to a focus on palliation and symptom control. Good communication with patients about the end of life is not universally emphasized in the education and training of radiation oncologists. ^, Consequently, innovative training programs are available to provide multicomponent structured communication guidance to radiation oncologists. ^,

Psychosocial care for oncology healthcare providers

Psychosocial care providers are associated health professionals who identify (through screening and assessment), refer, and/or treat those adversely affected by cancer. To address the high levels of psychosocial distress and unmet needs of people with cancer, national guidelines state psychosocial care should involve all healthcare providers in cancer care. ^,

Psychosocial oncology recognizes that healthcare providers who care for cancer patients are also affected by cancer; consequently, they should also have access to psychosocial care for the prevention and treatment of stress, burnout, and compassion fatigue. ^,

Provider fatigue is a concern for staff in many areas of health care, and particularly in cancer care; this burden is noted in radiation oncology. A 2012 study evaluating stress, burnout, and job satisfaction in New Zealand radiation oncology departments found all RT healthcare providers, regardless of their specific professional role, reported high stress levels associated with both patient-centered and organizational stressors.

In addition to education on psychosocial care and provider wellness programs, effective MDT functioning, role clarification, coordination of care, professional knowledge in psychosocial care and of psychosocial referral pathways can reduce occupational-related distress and burnout. ^,

Perceptions of psychosocial care

Research data show the incorporation of psychosocial care services into standard radiation oncology practice is key to ensuring patient-centered care and enhancing patient and caregiver outcomes, including improvements in symptom issues, QoL, and caregiver burnout. ^{, , ,} However, provider perceptions and gaps in perceptions impede implementation of psychosocial services. ^,

An oncology review article on perceived barriers of healthcare providers in the delivery of psychosocial care identified a lack of all of the following as the most prevalent barriers: resources, time, recognition as a patient need, knowledge regarding the benefits of psychosocial care, and referral systems.

In the radiation setting, perceived barriers among radiation oncologists to discussing goals of care and advance care planning with patients included not wanting to upset the medical oncologist, inability to schedule clinic time to hold these conversations, poor insurance reimbursement, limited training and knowledge, lack of interest in this clinical area, and levels of family and patient readiness, denial, and expectations. ^,

Given the gap in perceptions regarding psychosocial care services in oncology and the opinions expressed by radiation oncologists, it is likely that oncology providers will be slow to refer to psychosocial care services. A survey of physicians treating hospitalized patients found that although 90% of the practitioners were able to identify emotionally laden medical conditions, only 41% of them made social work referrals.

Addressing gaps in perceptions will require time, skill, and research, such as well‐designed trials establishing evidence of the effects of psychosocial support and increased visibility of effective social work involvement with cancer patients and caregivers.

Gap between psychosocial care standards and practice

Efforts to improve and ensure patient-centered care is a central aim of the 2020 cancer program standard outlined by the Commission on Cancer (CoC) of the American College of Surgeons (14). The CoC endorses distress screening for perceived emotional, physical, and psychosocial disability or distress as the first step of providing quality patient-centered care so that patients with higher levels of vulnerability can be targeted for immediate interventions. However, availability and access to formalized and structured psychosocial screening and psychosocial intervention programs for patients and families are highly varied and generally lacking. ^,

In the United States, the high quality psychosocial programs tend to be located in National Cancer Institute (NCI)-designated comprehensive cancer centers, where the overwhelming majority of cancer patients and survivors will not be treated. Nearly 85% of all cancer patients receive radiation treatment in a range of community-based programs and settings. ^, While the majority of patients received recommended care, cancer treatment centers must continue to improve symptom screening rates, particularly for emotional distress. ^{, ,}

A number of issues arise when reviewing the literature on distress screening and implementation of psychosocial care. A simple, easy-to-use and validated tool to grade the perceived emotional, physical, and psychosocial disability or distress is needed. Several tools exist and have been studied, but each of these tools has limitations. ^, Time and resources are needed for distress screening education and to establish a decisive referral process to further evaluate distressed patients and link them with appropriate psychosocial resource.

Evidence-based treatments (EBTs) exist for addressing the stress, psychological, and QoL effects of cancer, but they have not been widely adopted in the community. The CoC of the American College of Surgeons, the accrediting body for the nation’s cancer clinics and hospitals, mandates psychosocial screening of all patients, and the American Society of Clinical Oncology (ASCO) published guidelines for screening and treatment—including delivery of EBTs—for depressive and anxiety symptoms in patients. ^,

Healthcare providers can be resistant to implementation of EBTs, citing time pressures, impracticality, and belief that interventions are not needed. ^, Thus, those attempting implementation of an EBT often do so in organizations that may be understaffed, underfunded, or unaware of the extent of cancer patients’ psychosocial needs. Funding for services can be a programmatic challenge. Fees for services may discourage patients from seeking clinical services or may result in patients limiting how often they utilize the service.

Creating procedures that allow healthcare providers in radiation settings to integrate psychosocial care into their daily practice is key. Capacity- and capability-building strategies such as communications skills training, psychosocial care education, and enhanced MDT functioning that incorporates social worker services into daily practice will help to address many of these organizational, cultural, individual, and cost barriers identified.