The United Nations, observes May 17 as the World Telecommunication and Information Society Day to appreciate and generate awareness regarding the innumerable possibilities that can be leveraged by using Internet and other information and communication technologies.
In a country like India, the crisis brought on by the pandemic would have been several folds worse, if not for the availability of technology to deliver health care to the innumerable patients spread across the length and breadth of the country.
To commemorate this special day, we present you with stories from two geographically widely dispersed palliative care units as they share their experiences in adopting and efficiently delivering palliative care telemedicine services to those paitents who might not have had access to any health care services otherwise.
E-Palliative Care Service by Malabar Cancer Centre (MCC), Kerala
Author: Dr. Biji M S, Asst. Professor,Department of Palliative Medicine, MCC
The World Health ORganisation (WHO) defines tele-health as “The delivery of health care services, where distance is a critical factor, by all health care professionals using information and communication technologies, for the exchange of valid information for diagnosis, treatment, and prevention of disease and injuries, research and evaluation, and for the continuing education of health care providers, in all the interests of advancing the health of individuals and their communities1”. We, at Malabar Cancer Centre (MCC) adopted this concept to improve the quality of service delivery for our palliative patients who are being treated through our homecare service.
Malabar Cancer Centre is an autonomous institution under Health and Family Welfare Department, Government of Kerala. It is a dedicated cancer hospital catering to the needs of patients from Northern Kerala, neighbouring parts of Karnataka, Tamil Nadu and Mahe. Though our pain clinic existed since 2002, it was established as a department only in 2010.
The primary objectives of the department are:
a) clinical activities which includes Out Patient (OP), In Patient (IP) and Homecare service,
b) training of doctors, nurses and healthcare workers in palliative care and
c) conducting researches in palliative care.
All these objectives are carried out efficiently by our core team comprising of a doctor and a trained nurse in the OP services, along with another trained nurse who caters to our homecare services.
Current literature reveal that cost effective palliative care services can be provided by home based services. It was also noticed that over 50% of patients prefer home to be their preferred place of care and preferred place of death. 2
Our home care services began humbly in 2009 and was led by a Physician. . Our OP services also gradually expanded from providing care to 1024 patients in 2009 to us currently delivering care to over 9000 patients per annum. The increasing patient load resulted in our home care service to become Nurse led and Physician assisted. Under this model, our home care nurse interacts with the physician over the telephone in case of any queries or if any advise is needed regarding the management of a home care patient. However, the lack of the physical presence of a palliative physician in the home care team produced dissatisfaction among our patients and their care takers, culminating in frequent hospital visits by such patients and their carers.
This challenge resulted in the introduction of the concept of e-palliative care from 2013 at our center, under the able guidance of Dr Satheesan, our director.
The e-Palliative service, is an open source web application developed by the Health IT Division of MCC as a research collaboration with Centre for Development of Imaging Technology (C-DIT), Thiruvananthapuram. E-palliative care is a form of telemedicine that uses technology to provide real-time visual and audio patient assessment. The e-palliative care system is dedicated only for the palliative and bedridden patients treated in MCC through home care service. The primary objective of e-palliative care is to allow for the physician to be at the home care patients’ bedside by improving access between the physician and a bed bound patient.
The homecare team is led by a palliative care trained nurse who visits the patients’ with a laptop, having a high resolution camera and along with internet access. The laptop is usually placed at the patient’s bedside as the nurse connects the patient to the palliative care physician who is geographically located at the hospital through the e palliative web application, enabling the patient and their caregiver to see and communicate with their palliative care physician. Over 50 patients are consulted every month through the e-Palliative care services at our centre.
Over the time we conducted a pilot study with 30 patients to assess the satisfaction levels of our patients and their families upon utilization of our e-palliative care service.The results from this study was presented at the 23rd Annual International Conference of the Indian Association of Palliative Care, IAPCON 2016, held in Pune.
The study was subsequently expanded to include 120 patients. A validated e-Palliative Patient Satisfaction Questionnaire was provided to those patient’s or their primary caregiver’s when the patient was unable to read or was unable to comprehend the questionnaire, once they had utilized the home care services under this e-palliative care model. The questionnaire concentrated on six subscales namely, Patient’s general satisfaction, technical quality, communication aspects, financial aspects, time spent with doctor, accessibility and convenience. The mean score of response for General satisfaction was observed as 4.520. The mean score of response for Technical quality, Communication, Financial aspect, Time spent with doctor and Accessibility & convenience were observed as 3.922, 4.483, 4.550, 4.521 and 4.492 respectively. The overall satisfaction was found to be 4.394. These results were presented as a poster in a National conference ‘TECHNOSCAN’2017 (a conference on innovations in Medical field) and was awareded the Best Poster Award.
Our thirst for improvement led to a search for similar studies relating to tele-health and patient satisfaction. We found a systematic review consisting of 44 studies showing the key results in terms of improved outcomes, ease of use, low cost, improved communication and decreased travel time3.
The conclusions from our study were as below:
- The overall satisfaction of patients receiving MCC’s e-palliative homecare service was high (Mean score 4.383)
- The e-Palliative care is a feasible option for providing excellent palliative care in developing countries which are characterised by limited resources and financial constraints.
- High Speed Internet connectivity to be a major limitation in the widespread implementation of the e-Palliative care service model.
The highlights of the e-palliative care model are
- Feasible and easy to use.
- Increases patient’s confidence level.
- Increases the Homecare team’s confidence.
- Improved the availability and access to an expert palliative care doctor in remote villages.
- Reduces the burden of travel, its associated costs and the waiting time of patient’s in the
- Reduces hospital stay.
- Patients can share their health details with doctor from within one’s own calm and quite homes.
- Cost effective model
Our experiences in implementing the e-palliative home care service empowered us by facilitating us to learn the importance of successfully leveraging our strengths when faced with a weakness or threat to our services. (eg. we feared compromise of our OP service or the Home care program; however, with support from our very able Health IT division, we overcame our threat).
Another challenge encountered was the difficulty to access high speed internet connectivity in few locations. We addressed this by employing the wireless internet connectivity of two different service providers.
Our e-palliative home care services provides an opportunity for palliative home care patients to spend their remaining days at home and with their families. Our team is able to still vividly recollect the joy on Leela’s face(name changed), one of our early adopters of the e-palliative care home care service, when she saw her doctor very close to her and listening to all of her problems. She had completed her treatment for a carcinoma in her leg and lived with her only sister who was also unmarried like her. When I consulted her on the e-palliative system, she shared that she was unable to visit or consult a doctor for over a year, despite having health issues either due to financial constraints or her inability to walk. She mentioned of therefore being solely dependent on the home care nurse who visited her regularly from MCC. She went on to share“ Now I feel relieved and secure. I can hope to see and consult my doctor frequently. May God bless you all!”. This sort of positive feedback from our dear patients provides us with the energy to continue and better this mode of care.
Our hospital and our services were recognised by the Kerala State Government and we were bestowed with the Kerala State e-Governance Award under the e-Citizen Service Delivery category on 3rd January 2019 for this e-palliative service project.
This innovative method of e-palliative Home care service therefore facilitates a doctor’s virtual presence and allows for care to be provided at the patient’s bedside within the comfort of one’s own home by leveraging appropriate technological expertise. We are certain that this is definitely an enormous leap in the system of Health care delivery, especially to those who are bed bound or have other access limitations.
- World Health Organization. Telemedicine: opportunities and developments in Member States: report on the second global survey on eHealth: World Health Organization, 2010.
- doi: 10.1002/14651858.CD007760.pub2
- Telehealth and patient satisfaction: a systematic review and narrative analysis, Kruse CS, et al. BMJ Open 2017;7:e016242
Tele-Consultation Service by Dr B Borooah Cancer Institute, Assam
Author: Dr Kabindra Bhagbati
Dr B Borooah Cancer Institute, Guwahati, began providing Tele-consultation services for cancer patients on 4th September, 2020. This adoption of technology was done primarily to ensure continuity of care for those patients who were experiencing either physical, psycho-social or spiritual challenges and were unable to physically visit hospitals, due to the restrictions imposed by Covid.
Our center responded to these challenges by devising a policy mandating every department within the hospital to allot one day per week for tele-consultation services. Tele-consultation for the palliative medicine department is scheduled for every Friday. This system aims to improve access by providing an opportunity for symptomatic patients’ from geographically distant places to receive consultation for their health related problems. The patients are thereafter contacted by the Palliative care team for further follow-up. While this model of care allows for provisioning care in contexts where care may not be possible to be delivered otherwise, it is also important to note that this model is not a replacement for the clinical and physical evaluation of patients.
Every Friday, our team of doctors, nurses and social workers from the Palliative Medicine Department attend the Tele-consultation service and cater to 10 to 15 patients per day. Patients who wish to consult via the tele-medicine system must register in advance with the Palliative Medicine Department. We are happy to report that till date, 191 patients have benefited by this service. Adopting this technology has facilitated us to connect, communicate, consult and advise patients experiencing severe symptoms and those who are unable to physically attend the hospital or the clinic due to Covid imposed restrictions.