Palliative care interventions from a social work perspective and the challenges faced by patients and caregivers during COVID-19

Abstract

Aim: The aim of this article is to describe the range of challenges faced by both patients and caregivers during the lockdown due to the COVID-19 pandemic. It also seeks to describe the nature of interventions provided by the social work team to address these challenges. In addition, it aims to highlight the lessons that can be learnt in supporting families on palliative care in such unique disaster situations. Methods: This exploratory study uses a qualitative approach and analyses the perceptions of patients, their caregivers, and the staff in providing care. Out of 30 patients worked with during the lockdown period, a total of nine families were selected that had received services during this time. The challenges faced and the interventions provided were analyzed using Framework analysis. We then used this framework to develop the themes that have been presented in the article. Results: The analysis indicates that the range of challenges faced by patients included physical distress due lack of availability of medicines and nursing care; emotional distress due to the interruption of cancer treatment; financial and social distress about loss of incomes, isolation; and spiritual distress due to the uncertainty of last rites as well as fulfilment of last wishes. The concerns outlined by caregivers included: living with guilt due to the inability to ease their relative's distress; the stress of constant care giving; lack of information about available services and confidence to ask for help from others as well as the dealing with the grief of a dying relative. These families were supported through telephone calls and home visits for critical patients with the social work team providing active listening, reassurance, empathy, and networking to assist patients and families at this time. Conclusion: Palliative care is an essential component, especially in a disaster-related situation such as the COVID pandemic as patients and caregivers are left more vulnerable at this time. Telephonic and video calls play an important role in supporting patients and caregivers and in the most critical cases. However, it is also important to find the ways to provide direct home-based support to patients and families at this time so that they feel less alone, cope better, and experience meaningful support to build their resilience.

Opportunities to improve COVID-19 provider communication resources: A systematic review

“…Five personal narratives were also included: one article summarized a doctor’s experience as a COVID-19 patient [ 88 ] and four articles discussed the ways that physician communication with patients and families has changed pre-COVID to now [ 71 , 76 , 81 , 96 ]. Finally, the sample included three research studies: an editorial included findings of a survey of 376 healthcare providers empathic attitudes and psychosomatic symptoms that concluded that clinician’s higher empathy exposed them to more psychological suffering [ 56 ]; qualitative interviews with 9 families about challenges in palliative care interventions [ 62 ]; email or telephone interview with 8 physicians and 48 cancer patients that summarized 8 oncology-specific COVID-19 scenarios which patients responded to with anger, fear, and anxiety [ 68 ].…”

“…A variety of communication topics were covered in the articles, with the most prevalent topic a general emphasis on patient communication (25%) where lessons learned were highlighted [ 59 , 64 , 71 , 75 , 80 , 92 ], barriers [ 96 ] and resources [ 58 ] shared culture humility [ 61 ] and equitable care [ 63 ] addressed, and communication in palliative care settings emphasized [ 62 , 65 , 101 ]. Goals of care discussions and telehealth were the next most common communication topics (13%, respectively).…”

“…The last communication barrier was decreased patient-centered care [ [62] , [63] , [64] , [65] , [66] , 78 , 79 , 81 , 85 , 89 , 94 , 98 , 100 ]. Due to resource strain and the need to protect society from the impact of COVID-19, providers may not be able to provide patient-centered care [ 65 ].…”

“…With little known about COVID-19, healthcare providers do not know how or have no way to explain patient prognosis and in some cases do not have time to engage the patient/family about goals, shared decision-making, or transitioning to end-of-life care [ 62 , 85 , 86 , 95 ]. When patients near death in the hospital, families long for proactive communication, shared decision-making, and personalized end-of-life care [ 109 ].…”

Cancer Services During the COVID-19 Pandemic: Systematic Review of Patients’ and Caregivers’ Experiences

“…(II) Experiences of accessing cancer treatment and care services Participants in the majority of the included studies reported experiences of treatment delays [17,18,20,22,24,[25][26][27][28][29][30][31].…”