“End-of-Life Care is more than Wound Care”: Health-Care Providers’ Perceptions of Psychological and Interpersonal needs of Patients with Terminal Cancer

INTRODUCTION

There have been efforts to develop an end-of-life care policy in India to ensure quality care, a “good death,” and professional guidelines that are grounded in sociocultural realities.[1] As an extension of palliative care,[2] the end-of-life care aims at an empathic attentiveness to the meaning and experience of suffering of each patient.[3] The relief of suffering in the dying involves going beyond alleviation of physical pain to encompass “total pain”; the sum of the patient's physical, psychological, social, and spiritual pain.[4] Research has found that higher psychological distress and lower social support are associated with higher pain levels among persons with cancer.[5] A life-limiting illness is associated with many changes such as the loss of defining roles of parent and spouse, loss of control over one's body, loss of one's dignity, and these may be more difficult to deal with than the physical pain.[6]

A comprehensive end-of-life care plan shifts from the disease perspective and values an understanding and affirmation of the “whole” person with unique needs and preferences.[1] The goal of end-of-life care is, therefore, to improve the quality of life of both patients and families by providing nursing, psychosocial, and spiritual support. This “work of dying[7]” involves a process of life review and health-care providers may be involved in facilitating the completion of unfinished tasks. Research with Indian patients diagnosed with terminal cancer indicated that pain, physical health, finances, and the future were the most commonly reported concerns.[8] In a recent study,[9] 30 participants from 16 palliative care centers shared their views about the end-of-life care services relevant for the Indian setting. While a majority supported the importance of communication about the dying process and helping patients express their wishes, feelings, beliefs, faith, and values, some participants believed that this was not possible or relevant in the Indian setting.

The increasing incidence of cancer in India, with over 80% presenting at Stages III and IV,[10] adds to the existing complex challenges in the provision of palliative/end-of-life care services in the country.[11] There is inadequate training for health-care providers in the assessment and sensitive response to an array of physical and psychosocial needs of patients. In addition, there is a paucity of research on the concerns and needs of patients with cancer when death is imminent. Although professional health-care providers are on the frontline, providing complex and critical services, there is limited information on their perceptions and experiences of patients’ needs and expectations. These needs may be concealed, expressed indirectly or directly, and may also be underrecognized or remain unaddressed.

The present study was planned to increase the understanding of patients’ psychological and interpersonal needs, concerns, and internal struggles at the end of their life. As part of this research, the information was collected from the patients and health-care providers. This paper looks through the lens of health-care providers’ perceptions during their work at palliative care centers.

METHODS

RESULTS

Three domains emerged from the analysis of all the responses, namely, psychological concerns, interpersonal connections, and unfinished business. The emergent themes are described below in Table 1.

DISCUSSION

The findings of the present study illuminated health-care providers’ perceptions of the prominent psychological and interpersonal needs and concerns of their patients in end-of-life care.

The health-care providers in this study demonstrated sensitivity to the experience of negative emotions and mental health vulnerabilities among their patients as they approached the end stage of their lives. While patients experienced a range of distressing negative emotions, anger and aggressive behaviors were most challenging for health-care providers to deal with. While anger is an expected part of the dying process,[13] it can evoke difficult responses among care providers if they personalize the patient's anger or get enmeshed in the relationship.[14] Understanding anger as a defensive coping mechanism and using advanced communication skills can help in reaching out to angry dying patients more empathetically and effectively.[14]

Studies in the Western and Indian context have reported the presence of depression, anxiety, and hopelessness during the terminal phase of the illness.[151617] With the focus on alleviation of pain and other medical complications, it is possible that these psychological needs remain unrecognized, underreported, or inadequately addressed.[18] The use of measures for the rapid assessment of depression, anxiety and common psychosocial concerns, adapted for use in India, has been recommended.[19] Palliative care staff would need ongoing training and support in dealing with the psychological needs of their patients and effective networks with mental health practitioners where required. Initiatives such as “Measuring what Matters”[20] provide recommendations for the assessment and documentation of emotional or psychological needs in palliative care settings.

The health-care providers bore witness to their patients’ struggles with mortality and their questions about their faith and the existence of God. In cultures like India, family members and health-care providers may collude to hide information about the diagnosis and prognosis, in order to protect the patient from the pain of confronting death.[21] More recently, though there is a recognition that patients in India, particularly those who are younger and more educated, would want to be informed about the closeness and inevitability of their death.[22] This can help them reconcile their “unfinished business,” express their needs and preferences, and experience what they construe as a “good death.”[2324] George[25] highlighted that how sensitively the disclosure is made is perhaps more important than what is said. In addition, the issue of when is also critical; there must be time for the person to make some choices in a situation of powerlessness and uncertainty. According to Byock,[6] it is important for persons to acknowledge and say five things at the end of life – Goodbye, I love you, Thank you for loving me, Forgive me, and I forgive you. The findings of the present study mirrored some of these five tasks, with patients expressing needs for spending time, saying goodbye, taking care of loved ones’ needs, and leaving objects of memory for family members, along with attempts at repair and reconciliation. Similar to the findings in Western contexts,[26] the patients may also contemplate about the place of death and what needs to be done after death.[26] Palliative care practitioners are often closely involved in facilitating the process of mean-making,[27] taking care of unfinished business, and reconciling to things that are difficult to address directly or completely. In a collectivistic, pluralistic, and traditional society like India, care providers need to be cognizant of varied religious and subcultural belief systems, and each patient's position along the intersections of dimensions of class, religion, caste, community, language, age, and gender.[28] The importance and close involvement of family calls for training and skill in effective communication with family members.[29] Larson and Tobin[30] discussed how to overcome barriers and use effective strategies to have meaningful end-of-life conversations that can facilitate closure and completing personally salient tasks. They also emphasize the need for health-care providers to initiate these conversations in a sensitive and culturally appropriate manner, instead of solely in response to patients’ disclosures.

The participants’ responses revealed that patients had divergent interpersonal needs; strong wishes for support, time, and deeper connections with their families as well as active avoidance or detachment from relational bonds. George[25] argues that in collectivistic cultures like India, the presence of family and friends can help the person feel less alone in the experience of dying. Patients’ request to go home or the wish to be with family and die at home may reflect strongly held cultural beliefs and practices about death.[31] The need for belongingness and sexual intimacy with the partner emerged as an unmet need in the present study. The participants reported the hesitations the patients have in discussing these concerns: body image concerns, fears about rejection from the partner, less communication about sexual needs, and other issues concerning sexual well-being have been researched most often among women with breast cancer.[3233] Clearly, there are barriers to discuss sexuality concerns in palliative care settings, although the expression of intimacy needs might be particularly vital at this stage, when relationships with loved ones are time limited.[34] Research in palliative care populations has indicated that patients want to discuss their intimacy-related concerns with their care providers.[35] Training should be expanded to include practical ways of incorporating this into assessment and interactions between patients and care providers.[36] What is essential is an openness and sensitivity to such dialogs with patients and reflection on any personal or cultural attitudes that could impede such conversations. Hospice settings also need to consider possible arrangements for the provision of privacy for expression of sexual needs.[34] Health-care providers recognized varied reasons for patients’ avoidance and detachment from interpersonal relationships. Sensitive discussions with patients may reveal reasons that can be addressed; for instance, misconceptions or fears about family members’ reactions or responses to the illness and its’ effects. Myths about the contagious nature of cancer have been documented in community-based research in India, more likely among persons who are older, with lower educational levels and from lower socioeconomic strata.[37] Similar misconceptions among some patients (and family members) were noted by health-care providers in the present study. Addressing these misconceptions in the hospice would be a partiyfal measure, and there is a need to plan public campaigns that would have a wider reach and a more sustained impact. Worryingly, health-care providers also observed that some patients were isolated and their need for relatedness and support were met by rejection and threats from family members. These findings may be understood to some extent as stemming from misconceptions about the illness, caregiving burden, and economic strain, in a country which does not have an adequate public health system and insurance cover.

Patients built strong interpersonal connections with the health-care providers at the hospice and depended on them for emotional and instrumental support. The provision of compassionate care and empathetic engagement with patients is central for good palliative care. The concept of “emotional labor”[3839] describes the relational and emotional aspects of the work done by health-care providers in palliative care. This requires both absorbing others’ emotions and calibration of one's emotions and makes them vulnerable to “compassion fatigue,”[4041] the repetitive cycles of connecting closely with patients and their emotional needs, and then having to disconnect in the face of their inevitable death, can put care providers at risk for burnout. The findings suggest that health-care providers need comprehensive training, sustained use of self-care practices, and ongoing support, as part of systemic processes in palliative care centers.

The use of a qualitative lens to explore the experiences and perspectives of health-care providers is a strength of this exploratory study, but there are some limitations in the study design as well. The sample included participants from only two palliative care centers in South India, and the emergent themes may not reflect all the needs and concerns of persons in end-of-life care. The profile of patients at the palliative care centers and their socioeconomic, religious, and subcultural backgrounds can influence their dominant needs and concerns. Spiritual needs are an important aspect of the end-of-life's journey;[4243] however, this domain was not specifically explored in the present study. Although open discussion of health-care providers’ perspectives was encouraged during the FGD, it is possible that professional hierarchies might have influenced the communication. Involving the health-care providers in rechecking the themes after the analysis would have enhanced the validity of the research findings.

CONCLUSIONS

Further research could examine and integrate the perspectives from patients, family members, and health-care providers. The use of brief bedside screening tools for comprehensive assessment of patients’ biopsychosocial-spiritual needs has been recommended,[44] and these findings can inform the development of a culturally contextualized measure. Such research has important implications for more effective training, assessment, and support and care services in palliative care settings in India.