Feasibility of a Palliative Care Intervention Utilizing Community Health Workers to Facilitate Delivery of Home-based Palliative Care in India

Study setting

This research was a collaboration between the Medical University of South Carolina (MUSC) and the Saroj Gupta Cancer Centre and Research Institute (SGCCRI). MUSC is a tertiary care teaching hospital in Charleston, South Carolina. The study was conducted at the SGCCRI, located in the rural Thakurpukur region of Kolkata, India. In 2010, SGCCRI established the Palliative Care Department that provides an infrastructure to deliver palliative services such as inpatient, outpatient, and limited home-based care. Institutional Review Board (IRB) approval was obtained from the SGCCRI IRB, with the MUSC IRB approving MUSC investigators to access deidentified study results.

CHW training

The SGCCRI team employed four CHWs from the South 24 Parganas Region where the intervention was piloted. The CHWs were recruited from a local association of rural medical practitioners in West Bengal. To recruit CHWs, the SGCCRI hosted a palliative care training that included assessment of pre/post testing of knowledge acquisition and interest in palliative care service. Following the training, the CHWs who scored highest in palliative care knowledge and expressed interest in palliative care service were interviewed by the SGCCRI, and the best candidates were selected to serve as CHWs. These CHWs had varied allied health profession backgrounds, such as diplomas in homeopathic medicine and ultrasound technology.

Before the intervention, a study orientation was provided to the cancer center team, which included the CHWs and all palliative care clinical team members. The orientation included information about the intervention purpose, design and protocol, along with CHW’s role and responsibilities. The team of CHWs received an intensive onsite 40-h training before the intervention. The didactic classroom training was a 20-h session delivered over five half days. It covered palliative care principles, navigation intervention protocol, local resources for patient support, strategies for team-based care, care for caregivers, communication skills, cultural and spiritual considerations at end of life, pain and symptom assessment and management, medications, and educational resources. Case studies were going to be used as part of the didactic training to provide CHWs an opportunity to apply their new palliative skills, but this did not occur due to cancer center preferences. CHWs also received 20 h of “hands-on” training by shadowing the clinical team on patient encounters at the cancer center and in patient homes.

Toolkit adaptations

The palliative care toolkit, the backbone of the palliative care intervention, includes seven chapters that provide essential information for delivering basic palliative care. These chapters include an overview of palliative care, different models of palliative care, teamwork and training guides, details on communication skills and spiritual support, pain and symptom control, helping children and families, and advocacy. The toolkit also includes forms for organizing and managing delivery of palliative care in the community. Our minor adaptations to these forms included addition of space to specify referral source, addition of an individualized care plan as part of the initial patient assessment, and modification of the patient visit record to include a pain score and action plan. We also added supplemental cancer specific educational materials and a form that CHWs could use to refer patients back to the cancer center for appointments. The original toolkit forms included codes for community providers to document patient health problems and activities carried out to assist patients, but the clinical team felt it was more feasible to record this information in text (as opposed to numeric codes), given concerns about CHW’s level of health literacy.

Palliative care intervention

The palliative care intervention was implemented by the SGCCRI Palliative and Supportive Care Department in the South 24 Parganas region, with each patient scheduled to receive home-based palliative care support from a CHW for 3-months or until they passed away. Patients who required home-based palliative care were screened for the study by the SGCCRI study coordinator, and informed written consent was completed with patients who chose to participate. For each patient who enrolled in the study, the palliative oncologist assigned them to a CHW who resided closest to them to facilitate ease of making home visits. The CHW participated in the initial clinical team consultation with the patient/caregiver and was introduced as the team member who would provide home-based palliative care support. The CHW then visited the patient each week, or more frequently as needed. During these visits, the CHW used resources from the Palliative Care Toolkit to monitor the condition of the patient and their caregivers, manage pain and other symptoms, and assist patients to contact their provider, arrange appropriate referrals or obtain community resources as needed. CHWs were trained to maintain continual communication with the cancer center palliative oncologists and use their cellular phones (text messages, phone calls, or audio-video chats) to facilitate this process.

Data sources and collection

The primary source of study data was the patient care form in the Palliative Care Toolkit. These forms included: An initial patient assessment and care plan, a patient visit record, a patient-held record for home-based care, a patient-held a morphine chart, and a patient-held drug record. The baseline patient assessment and care plan were used to document the patient’s type of cancer and underlying health status, including physical and psychosocial health issues, barriers to care, support received from the community, life expectancy in months and status on the discussion about not resuscitating. This is also where information was recorded about what the patient and family knew about the terminal nature of the patient’s condition, as it was a cultural practice that some patients were not told the terminal status of their condition to prevent despair. This information was recorded by the palliative oncologist based on discussion with patient and family and knowledge of the patient’s medical history.

The patient visit record, completed at every home visit, was used to document information about the patient’s condition and needs, pain score, actions taken by the CHW to assist the patient, and progress on addressing the patient’s needs. Pain scores and their averages were calculated from these forms based on the weekly pain score that was reported by patients on a scale from 1 to 10. While the original Palliative Care Toolkit patient visit record included a comprehensive list of codes to record patient problems and clinical activities to assist, the oncology team felt like this information would better be recorded in a qualitative manner using short descriptions, as the CHWs might have difficulty using detailed codes to record this clinical information.

Data analysis

Since the purpose of the study was not to conduct a confirmatory trial, but to test our intervention and research methods, our small study sample size of ten participants was consistent with recommended best practices for pilot study sampling.^[10] Because this was a small feasibility trial, data analyses were descriptive. Data was extracted from the toolkit forms and managed and analysed in Excel. Data were checked for missing values and data inconsistencies. Continuous variables such as means, standard deviation, medians, and ranges were calculated as appropriate, with pain scores being non-Gaussian in distribution. Outcomes included characterization of patients served by the CHW, clinical concerns and needs reported by patients and their caregivers, pain scores, CHWs roles and tasks performed to assist patients, and accuracy and completeness of forms completed by CHWs.

Patient demographics

Eleven patients completed informed consent to participate in the study, with one of these patients passing away before they were able to start their study participation. [Table 1] provides an overview of the baseline characteristics of the ten patients who participated in the study. The mean age of patients was 58.5 years with a standard deviation of 11.7. Fifty percent of the patients were male. The most common types of cancer were head and neck cancer accounting for 30% of patients, and gastrointestinal cancer accounting for an additional 30%. Eighty-nine percent of patients reported physical problems at their initial patient assessment. The majority (67%) reported having adequate social support, but encountering emotional problems, which ranged fairly evenly between depression, anxiety, and existential worries about their own death and how family would cope without them. Sixty-seven percent of patients had not had any discussion with their oncologist regarding preferences about resuscitation. In addition, 45% of patients lacked understanding of their disease and prognosis and 11% reported transportation challenges.

CHW patient caseloads

Patients were assigned to CHWs who lived in their own communities to facilitate ease of regular home visits. Only four of the ten patients completed the intervention, with the remainder passing away before the end of the 3-month intervention. CHW 1 only had one patient who completed the intervention. CHW 2 had six patients, of whom four died before the end of the intervention period. CHW 3 had three patients, of whom two died before the end of the intervention period. CHW 4 did not have any patients assigned to him because he did not live in a community where any palliative care patients in the study resided.

Patient health issues and navigator actions

[Table 2] summarizes patient health issues and actions the CHWs took to address them. All patients reported having pain in some form (n = 10), and over half reported having bleeding issues (n = 6). Gastrointestinal issues (n = 5), diet (n = 4), and respiratory problems (n = 4) were also commonly reported. Health issues that were less commonly reported included weakness, swelling, anxiety, urination problems, fever, fungal infection, and mouth/throat problems. Many of the actions that the CHWs took to assist patients included contacting the palliative care oncologist to work with the patient and family to adjust medications, initiate new medicine, or refer the patient to the hospital. All medication adjustments were performed by the SGCCRI palliative care oncologist, with the CHW facilitating dialog between the patient, family, and palliative oncologist through audio and video calls, and in person visits to the cancer center as needed. The median number of health issues per patient was 3 and ranged from 2 to 7.

CHW pain assessments

[Table 3] summarizes the pain assessments recorded at the patient visits, along with each CHWs caseload assignment. The table documents the baseline pain level, final pain level, and mean pain level. Baseline pain levels ranged from 0 to 8, with a median score of 7. The final pain level for all the patients ranged from 0 to 10, with 8–9 being the most commonly reported scores. The average pain level was also calculated. Of note, CHW 1 did not understand that he was supposed to record pain scores using a numeric scale, leading him to report pain scores verbally. To measure the completeness of the collected pain data, the table displays the number of home visits made by the CHWs, alongside the number of these visits in which a pain score is recorded. CHW 1 only recorded verbal pain level for 58% of the visits. CHW 2 recorded pain levels for most of all the visits and CHW 3 recorded pain levels for all of their visits.