Help poor terminally ill patients get access to medical care by Karunashraya

MILESTONES ACHIEVED (IN PATIENT SERVICE) NEW ADMISSIONS: 378 RE ADMISSIONS: 143 TOTAL NO. OF PATIENTS: 521 TELECONSULTATION: 421 OPD 119 MILESTONES ACHIEVED (HOME CARE SERVICE) NEW ADMISSIONS: 142 NUMBER OF PATIENTS: 461

Inauguration of a New Block at Karunashraya: Dr. Pratima Murthy, Director/Vice-Chancellor, National Institute of Mental Health and Neurosciences, inaugurated Bagchi Education and Research Centre and OPD Block on the 27th February 2022. This block also houses the charity shop, a library and a 100-seating capacity auditorium. The entire block is well-furnished and fully functional now.

Celebrations: Karunashraya celebrated new year with its patients and staff. On the occasion, patients were greeted with flowers and cake was also cut, and Cipla foundation sponsored a sumptuous lunch. The hospice also celebrated women’s day. The celebration was supported by AXA XL India, who also organized lunch/high tea on the occasion. Gifts were also distributed to the patients and staff of Karunashraya.

Karunashraya Charity Shop celebrated its 10th anniversary on February 10, 2022.

Volunteering/CSR Activities: A group of seven volunteers from the organisation “People for People” conducted cultural program for our patients and staff. As a part of Epicor’s CSR initiative, Karunashraya was invited to hold an online session on compassion for its employees, which was conducted by Dr. Seema Rao, Associate Director, KIPCER.

A student volunteer, Diya Vijayaraghavan, a student of NPS, raised funds for Karunashraya through friends and family. A group of six volunteers from Lions club, NSC Bose Dist 317-F visited Karunashraya and donated fruits for our patients.

Like previous years, Sharanya Narayani International School organised a ‘Run For Care 3.0’, a virtual marathon and funds raised during the event were donated to Karunashraya for providing free professional palliative care for advanced stage cancer patients. The employees of Baker Hughes and their families took time out of their busy schedules to work together to create a fun video for our patients as part of their CSR activity.

Visitors from Academic Institutions: Students of the 8th and 9th grade from New Age World School visited Karunashraya to get in insight into palliative care of terminally ill patients. Students of Ekya School had organised a campaign and raised provisions and groceries for our hospice. A group of six volunteers from Xavier Institute of Management and Entrepreneurship, Bangalore, sent art and craft materials for our patients.

Seminar/Conference/Training: The team Karunashraya was invited to an annual conference at Odisha on ‘Cancer Care. Karunashraya also conducted a volunteer training program in virtual mode. The program was a great success and there were about 22 participants.

Distinctions/Honours : NEWS 18 Kannada honoured Karunashraya by its prestigious award “VARSHADA Kannadiga 2022” under the social service category.

Our councillor Poornima Prakash and our social worker Renuka Anand were recognized by Rotary Bangalore Indiranagar for their outstanding efforts in delivering palliative care to cancer patients.

Teams from Cipla foundation and Manipal Academy of Higher Education visited Karunashraya to get an insight into the palliative care strategies currently being employed in our hospice, as also to exchange ideas for further improving palliative care protocols.

Remembering Patients: “Vidhaya”, a new initiative was launched in Karunashraya to remember the patients who breathed their last within its premises in each calendar month. In this context, the first prayer meeting was organized at the end of March 2022 in which the Karunashraya staff came together to pay their respects to those departing in the month by lighting candles for each one of them. Atul recited a poem and the program concluded after observing a 2 min silence, praying peace for the departed souls.

Department of Education & Research : The Department of Education and Research has been robustly working towards creating awareness, sharing knowledge, and building skills in palliative care through various activities. We have also been actively involved in research activities and collaborations in palliative care.
Education and Training Activities:

1. Certificate Course in Essentials of Palliative Care (CCEPC): We organized the Certificate Course in Essentials of Palliative Care (CCEPC) for doctors and nurses in collaboration with Indian Association of Palliative Care (IAPC) at our center for the first time. This program was aimed at educating doctors and nurses in palliative care. Fourteen doctors from various parts of Karnataka and Kerala enrolled in the program from our center.
2. Volunteers Training Program: A 16-hour online certificate course for community volunteers was conducted in two batches, on February 5-6, 2022 and March 12-13, 2022, in collaboration with Indian Association of Palliative Care (IAPC). A total of 30 volunteers participated in the training program. Eminent faculties in the field of palliative care from various esteemed institutions across India were involved in the training. Below are the feedbacks from some of the participants. “I have always felt humbled by what Karunashraya does, but the sessions made me understand the true value of their work, and how that touches lives. Not only were the talks highly informative, the empathy exhibited by each of the speakers touched my heart. I am looking forward to volunteering and spreading awareness about palliative care.”
   Debjani Mukherji, Senior Director, Strategic Partnerships, TalentSprint Private Ltd
3. Training for Medical Officers from Bangalore Urban Area: In collaboration with Government of Karnataka, as part of the National Program for Palliative Care (NPPC), we were involved in training over 40 medical officers from Bangalore Urban locality in palliative care.
4. 5-day Certificate Course in Palliative Care: As part of the training new professionals in palliative care the department organized fundamentals in Palliative Care 5 days training for 3 doctors and 4 nurses of Majethia Foundation, Hubli.
5. Advocacy Activities: Our advocacy activities continue unabated. We have been delivering talks on palliative care, communication, research and counselling to the following organizations: Solis Health Care Solutions, Bangalore, Nightingales Trust, Bangalore, Krupanidhi College of Nursing, Adayar Cancer Institute, Chennai, Trivandrum Institute of Palliative Sciences, Trivandrum, Indian Association of Gynaec-oncology, and SAN Engineering and Locomotives.
6. Internships/Observers: We had social workers, psychologists, counsellors, doctors, nurses, and volunteers interning with us from various institutions across India, like Oxford College, Bangalore; Tumkur University, Tumkur; Banjara Academy, Bangalore; BALCO Medical Center, Raipur, Chhatisgarh; Indian and Institute of Head and Neck Oncology, Indore, Madhya Pradesh.
7. Research Activities: As part of the International Conference of Indian Association of Palliative Care (IAPCON 2022) at Jaipur our faculties presented abstracts and posters. Many of our faculties were invited as guest speakers and chaired various sessions in the conference as well. We are also partnering with various national and international organizations for collaborative research.

The Department of Education and Research conducted various academic sessions inhouse as well as at other institutions. The inhouse academic activities covered various topics as part of skill development sessions and guest lectures. Some of the topics that where focused upon were Self Care, Solution focused brief Therapy, Colostomy Care, Organ Donation etc… Dr. Seema Rao and Ms. Sangeetha were invited as resource persons for a training program at Goa conducted by the Directorate of Health Services. This was attended by over 130 enthusiastic healthcare professionals. Dr. Seema was also invited to speak on communication skills, grief & bereavement, dignity therapy and communication during EOLC as part of the faculty development program conducted by Pallium India. Dr. Seema also attended the EAPC 12th World Research Congress and presented 2 posters on Enhancing Palliative Care Involvement through stakeholder engagement in Intensive Care Units: A Theory of Change Approach & Palliative Care Provision in Intensive Care Units in low & middle Income Countries: A Scoping Review. Ms. Sangeetha was awarded the Lantern Modern Program in EOLC Nursing. She is 1 of the 3 selected candidate to be awarded scholarship from India and is currently pursuing the program. Dr. Seema was invited to give a talk on Psychosocial Issues in Cancer and Palliative Care to the PG students at Manipal Comprehensive Cancer Care Center. Dr. Seema had and article published in the BMC Journal on Building Palliative Care Capacity in Cancer Treatment Centres: A Participatory Action Research and another article submitted to Journal of Intensive Care on Palliative and end-of-life care in intensive care units in low- and middle-income countries: A systematically constructed scoping review. Ms. Maria was invited as a panelist to speak on social work practice at St. Joseph’s College as part of the Practitioners and Academicians meet to help aspiring students understand the scope and importance of the profession. Training of the Trainers (ToT) of Medical Officers and Nursing Officers on Facility Based and Home Based Palliative Care was conducted by the department in 3 batches with each batch consisting of 11 doctors and 11 nurses from various districts of Odisha. The training was held for 10 days with theory and we as practicum to help better understanding of delivering palliative care at the districts of the trainees. The didactic lectures were conducted both virtually and face-to-face by experts in palliative care from various palliative care institutes in India. Special attention was paid to ensure the training covered the practical aspects of palliative care service and delivery, both institutional and home-based, contextualized to individual settings, be it primary, secondary, or tertiary. The department had interns from various social work and psychology institutions like Banjara academy, St. Joseph’s college. We also had interns pursuing MSc. Psychology and specializing in Msc. Psycho-oncology from Christ Deemed to be University and St. Francis De Sales College for a 1-month internship with a focus to understand counselling during EOL. The department also had various doctors and nurses visiting for clinical posting and 1-day observations from other institutions and pursuing various courses in Palliative medicine and Palliative Nursing. Apart from the training the department celebrated the graduation of the 30th batch of Nursing Aides on 12 May 2022.

Challenges: Ever since the pandemic started, our patient admission rates were very low. Thankfully, in the past three months our patient count increased significantly. We faced a sudden shortage of nursing staff, leading to an increase in workload for the rest of the nurses. We would also receive patients who would come to our hospice center in an extremely bad state, hence they needed constant medical care and supervision which in turn, led to our nurses being overworked. Recruiting more staff was easier said than done as not many people are willing to work in a hospice setting. We solved this issue by increasing our recruitment reach by approaching several nursing schools across Karnataka and increasing our nurse’s salaries as well. We also had a shortage of doctors, who had to manage both, our in-patient and home-care patients.

Strategies used to overcome the challenges: Hiring additional staff did help us but we had to give them adequate training and get them used to working in a hospice setting as well.

Finding Courage with Cancer Anyone who knew Amma would say that she was very independent and bold. As the eldest of ten siblings, she was their primary caregiver and was put in charge of the entire household, while her parents worked as labourers. The same pattern continued when she had a family of her own as her husband passed away, making her the sole caretaker. She prioritised everyone’s needs before her own, so when she noticed slight pain and a lump in her breast, she did not give it a second thought. A few years later, when the pain was unbearable she finally consulted a doctor and was diagnosed with advanced stage breast cancer. Being diagnosed with a terminal illness would undoubtedly be a painful reality for anyone to accept but for Amma, it meant that she couldn’t fulfill the role she had lived her entire life. It was very hard for her to come to terms with the fact that she could no longer carry out the basic things that she could do so effortlessly before. Amma was in extreme physical pain as her tumour was very advanced and needed dressing up to four times a day. It took several sessions of counselling for her to completely accept her diagnosis and its implications. Her toughest battle was not accepting that her days were limited but accepting that she could no longer take care of herself and her loved ones. She had played the role of a caretaker her entire life hence she found it very hard to give up control and accept that now, it was her turn to be looked after. She settled on a compromise that if she was too sick to cook her own meals, she asked that she could at least choose what she wanted to eat every day. Despite her condition, her courageous and independent spirit never left her. She would hand wash her clothes, fold her sheets and tidy up her ward. She made a lot of friends and was very social. Together they would help each other walk around the pond whilst sharing their life stories, eat their meals together and watch TV. She passed away peacefully in her sleep and remained courageous and independent until the end.

MILESTONES ACHIEVED (IN PATIENT SERVICE) NEW ADMISSIONS: 323 RE ADMISSIONS: 88 DEATHS: 213 TOTAL NO. OF PATIENTS: 411 TELECONSULTATION: 576OPD 51MILESTONES ACHIEVED  (HOME CARE SERVICE) NEW ADMISSIONS: 107DEATHS: 57 NUMBER OF PATIENTS: 327 MAJOR EVENT Odisha Chief Minister lays the groundwork for the Bagchi-Karunashraya Palliative Care Centre:

Karunashraya crossed another major milestone and created history on July 12th, 2021, as Shri Naveen Patnaik, Hon. Chief Minister of Odisha, laid the foundation stone for the upcoming Bagchi-Karunashraya Palliative Care Center at Info Valley in Bhubaneshwar, Odisha. The Bagchi-Karunashraya Palliative Care Centre provides high-quality palliative care, peace and dignity to patients in their last few days. Our palliative care unit will have 110 beds, education and research, staff residences, a 500-seat auditorium, and various patient-centric facilities such as a wellness centre and a rejuvenation area. The Bagchi-Karunashraya palliative care facility will assist Bhubaneswar in becoming a leading cancer care and palliative care centre in the country. All the employees of Karunashraya have compulsorily received both doses of the COVID vaccine. This was necessary to safeguard patients.

INAGURATION OF HOME CARE SERVICE AT BHUBHANESWAR The Bagchi Karunashraya palliative care centre's city space and the home care service was inaugurated by Shri Suresh Chandra Mahapatra, Chief Secretary, the Government of Odisha, in presence of Mrs and Mr Subroto Bagchi on 7th December 2022. We had the presence of several doctors, senior Govt functionaries and other NGOs at the opening, including Rotary Dist. Governor nominee Rt.Jayshree Mohanty. We also signed an MOU with Acharya Harihar Post Graduate Institute of Cancer, Cuttack.

Independence Day CELEBRATIONS: We celebrated Independence Day, by hoisting the National flag followed by patriotic songs sung by our nursing staff. The Round Table India sponsored refreshments for the staff on the occasion and their three members visited Karunashraya to learn about our services.

KARUNASHRAYA SPORTS DAY: Karunashraya’s Annual Sports Day on 28th August witnessed the active participation of the nursing staff. Other staff members played a supporting role in cheering the participants. The event provided excitement and joy to all inmates, including patients.

WORLD HOSPICE AND PALLIATIVE CARE DAY CELEBRATIONS: We celebrated “World Hospice and Palliative Care Day” on the 9th of October 2021. The theme for this year has been "Leave No-One behind - Equity in Access to Palliative Care". This celebration was made memorable by the fabulous stage performance by our nursing staff followed by a stand-up comedy show by Mrs Sudha Baragur. Sudha is an Indian humorist and stand-up comedian based in Bangalore.

KANNADA RAJYOTSAVA DAY / DIWALI CELEBRATIONS: On the occasion of Kannada Rajyotsava Day, we had organised various competitions like solo dance, solo song, group dance and fashion show for our nursing staff. The competitions were held on the 22nd and 23rd November 2021 followed by a fabulous cultural performance by our administrative staff on the 24th November 2021. In collaboration with the VFC group, Karunashraya celebrated Deepawali, the festival of lights. A team of 60 volunteers, led by Prarthana Unkalkar Kaul, decorated the hospice with rangolis and diyas. Volunteers and nursing staff actively participated in diverse cultural programs organized on the occasion.

VOLUNTEERING/CSR ACTIVITIES

A young and enthusiastic volunteer created an awareness video on World Hospice and Palliative Care Day; she also organised a fundraising campaign during that week. As a part of their CSR Activity, Seven volunteers from Baker Hughes visited Karunashraya and donated corporate gifts for our staff. Their team also created an awareness campaign among their staff. Another group of volunteers from the same organization visited Karunashraya on one more occasion and besides helping various departments of Karunashraya, donated boxes of sweets for our staff. Some employees of Algorics visited Karunashraya; they also created an awareness campaign among their staff and raised funds for our ongoing projects. About a dozen IQVIA employees visited Karunashraya and donated blankets and sweaters for our patients. They also organised cultural programs for our patients. Over a dozen volunteers from SAP visited Karunashraya and lent helping hands in various departments.

WEBINAR SERIES:

A 6-part webinar series on Palliative Care in the Critical Care Setting was conducted by the Education & Research wing in collaboration with Lancaster University, UK and Manipal Academy of Higher Education. The webinars had eminent national and international experts discussing the pathways and their experience of providing palliative and end of life care in the intensive care units (ICU). This series was attended by over 150 participants from all over the world and included physicians and nurses working in palliative care and in critical care. This is one of the first webinar series in the world on the subspecialty of ICU Palliative Care and generated much interest and participation from the delegates.

GUEST LECTURES:

As part of the monthly academic activity, the department also conducted two guest lectures, on medical issues in palliative care. The subject of the two lectures was a) Electrolyte Abnormalities in Palliative Care – Assessment and Management and b) Management of Diabetes in Palliative Care. The lecture on Electrolyte imbalance was given by Dr Anuja Damani, Associate Professor at Tata Memorial Centre and the lecture on Diabetes in Palliative Care was given by Dr Ashwin Mathur, Senior Professor and Head, Department of Palliative Medicine, SMS Medical College, Jaipur. The lectures were attended by over 80 participants from all parts of India.

OTHER ACTIVITIES:

The Department of Education and Research, BHT-Karunashraya, has been working actively to promote awareness about and build skills in palliative care. As part of this endeavour, a 7-part webinar series on Nursing in Palliative Care: Issues and Management was conducted in October-November 2021. The webinar explored the role of nurses in palliative care and aimed to enhance knowledge about various aspects of nursing in palliative care. Eminent faculties from around the globe shared their expertise with the participants. Around 1500 participants, both nurses and doctors, from different parts of India participated in this webinar series.

The Department of Education and Research, BHT-Karunashraya, works closely with the Government of Karnataka and is actively involved in training government medical officers in palliative care. Dr Seema Rao, Associate Director (Education & Research) and Ms Sangeetha Murugan, Nursing Tutor, participated in the one-day sensitization program in palliative care organized by the District Health and Family Welfare Department, Chikkaballapur district. Around 60 medical officers from the district were sensitized about the concept of palliative care and its applicability in their settings. The department also conducted a half-day sensitization program for doctors from Primary Health Centers of four districts; Kolar, Ramnagara, Bangalore Urban, and Bangalore Rural. Around 190 medical officers from the four PHCs participated in this program which aimed to bring awareness among government doctors about Palliative and End of Life Care and the principles of pain management.

The Department has also been hosting many interns and observers since October from various parts of India. In collaboration with the Department of Counselling Services internship and training on psychosocial care during end of life was organized for medical social workers and trainee counsellors from Oxford College, Banjara Academy, Narayana Hrudayalaya, Bangalore, Tumkur University, Tumkur, and Sri Padmavathi Mahila Vishwavidyalayam, Tirupathi. Around 30 nursing students from Krupanidhi College of Nursing, Bangalore, were trained on practical and theoretical aspects of nursing care along with bedside demonstration. We also had observers visiting from Cipla Palliative Care and Training Center, Pune and East Point College of Medical Science and Research Center, Bangalore. The Department also collaborated with other institutions like Pallium India, Thiruvananthapuram and Amrit Dhara Palliative Care Center, Bhubaneshwar in their training activities.

We escaped the first wave of the pandemic comparatively unscathed. But alas that was not the situation in the second wave. All of us are vaccinated, we stopped the quarantine process and only asked for the RTPCR for those who were travelling. The screening protocols were slightly relaxed for our staff. The caregivers were asked to maintain all safety protocols, but once inside the hospice we were unable to monitor them continuously. The second wave affected us badly. Several staff members got infected, mainly through caregivers of the patients. Many of our staff lost their loved ones to COVID. Some are still suffering from the after-effects of the infection. A few of our patients also got infected and had to be shifted to tertiary COVID hospitals so that they could get appropriate treatment. We had to shut down our operations completely for some time to ensure the safety of the remaining patients. Though we were affected badly, we did not stop providing care and support to our patients and their families. The homecare operations were halted, but the medicines and consumables that our patients at home required were provided at the hospice. Teleconsultation and video conferencing became the new norm.

Patient: Mrs V Age: 79 yrs Admission date: 26th November 2021 Mrs V is a widow living with her son who is her primary caregiver. She was diagnosed with Carcinoma Lip in the month of November 2020. The son consulted Kidwai memorial institute of oncology and there they were advised surgery and radiotherapy. Unfortunately, the patient’s family didn’t get her treated due to financial difficulties and moreover, the patient was not willing to undergo any treatment.

On the day of admission, the patient complained of pain over the upper lip that was radiating to her right ear and mentioned it was disrupting her sleep. The patient and the family were aware of both diagnosis and prognosis. Her main expectation at Karunashraya was – Pain relief and Wound care. The patient complained of loneliness after getting admitted.

During admission, it was clear that the main caregiver (son) was in burnout because he had to quit his job to take care of the patient. According to the caregiver, he is the only son. The patient was completely dependent on the son. She would chew betel nuts every day. She always wanted her other children to meet her and spend time. But, those children were not reciprocating the request.

In the first few sessions with the patient, she expressed her loneliness. She wanted somebody to talk to her more frequently. She was finding it difficult to adjust to the new place and was craving betel nuts which she had been consuming for more than 20 years. Initially, she was not cooperative. It was very difficult to explain hygiene since she had a rural background. A few days later, she was seen getting used to being at the hospice. Since the caregiver was the sole decision-maker, he expressed his helplessness of not being able to take care of his mother further. After a few sessions with him, he expressed his frustration towards his siblings. That was when he revealed that the patient had 13 children out of which 4 were still alive. Also, he had not informed his siblings about the poor prognosis. He was advised to inform the rest of the family, but he was unwilling to bring them to meet Mrs V.

During one of the follow-up sessions with the patient, she expressed a wish to eat through her mouth and wanted to talk to her daughters and grandchildren. Her appetite was slowly deteriorating since she developed maggots in the wound. Additionally, the patient was not willing for a feeding tube. She would pull out the tube quite often. The patient started showing withdrawal symptoms like – craving for betel nuts, feeling irritable, and restless. We couldn’t provide the betel nuts since she would get maggots.

The goal of care as of 18th December was –

1. Pain Management
2. Wound Management
3. Provide Nutrition
4. Treat Delirium
5. Bring her other children to meet her

The caregiver was not willing to share the contact of other siblings till the 16th of December even after repeatedly informing him about the deteriorating condition of the patient. He was advised about the importance of bringing others into the picture since the patient was wishing for the same.

On 17th December, we managed to get the daughter’s number and informed her about the condition. In the meantime, Mrs V’s nutrition had come down and she was responding very minimally. The daughters and grandchildren started visiting the patient every alternate day after repeatedly following up with them and orienting them about the importance of their presence with the patient. I would call the children often to convince them to visit at least twice a week. The grandchildren were also informed to meet the patient once in a while. In one of the sessions with the daughter, it was found out that a site was given to the main caregiver thinking he would take care of the patient till the end. Their relationship was strained because of the main caregiver’s ill-treatment towards the patient. After a couple of days, I got the eldest son’s number. He was not willing to talk or meet the patient. After repeated efforts, he agreed to see the patient after the death, but not before that.
The family was given space and time to process the deteriorating condition of the patient. Frequent follow-ups were done to help them cope better. For the first few weeks, the main caregiver was the only person to visit the patient. It was only after frequent follow-ups, and building trust with the family, other children started visiting the patient. The patient was put on End of Life Care on 22nd December based on the following criteria –

1. Profound weakness/bed bound/requiring continuous care
2. Drowsy/reduced cognition / semi-consciousness. The family was informed about the deteriorating condition of the patient and was advised to think about rituals as expressed by her. With the collective ideas of all the siblings, they decided to take the body to their native and perform all the rituals. The patient expired on 25th December 2021. It was very difficult to bring the family together to convince them to prioritize the needs of the patient. The main caregiver was the only point of contact and most of the information was not conveyed to the rest of the family. Constant communication and follow-ups with the caregiver helped me to contact the rest of the family. It was important to give a meaningful ending to the patient, and that was fulfilled by the presence of the other children. Though the children were brought in to meet the patient, it was not possible to intervene and solve their family misunderstanding/problem.

Despite the limitations imposed by continuing covid-19 pandemic, Karunashraya has been working relentlessly for maintaining the quality of palliative care it delivers to terminally ill cancer patients. Our nursing and other staff members continue to exercise utmost precaution in ensuring that the dreaded virus does not find any host in Karunashraya. Social distancing and other norms, as defined by the government agencies, are being strictly observed by all the employees of Karunashraya. The current second rise in new Covid-19 cases has enhanced our alertness and preparation for combating the disease.Training and Education:Karunashraya had a one-day sensitization program in palliative care for the Government-managed Primary Health Centre nurses and pharmacists. The program attracted 67 participants.We had conducted a one-day training for the new staff of Karunashraya in relation to sexual harassment. Ms. Shobhana R. Thakrar, a consultant for the POSH Act and a social worker/our external committee member, trained our 31-nursing staff.Awareness Programs:Members of the club Platinum city, in association with Karunashraya, conducted a cancer awareness program and hair donation drive on World Cancer Day. The campaign was launched at Showoff beauty salon, Domlur, Bangalore. A Volunteering group, comprising software engineers and named Robinhood, visited Karunashraya on January 25, 2021, and planted a few saplings as a token of their commitment to the cause and to spread awareness about palliative care. Celebrations:Karunashraya celebrated the new year on the 1st of January 2021, and the function was sponsored by Axa Technologies. On the occasion, games were organized and patient’s wards were decorated, and Karunashraya employees were treated with sumptuous lunch and hi-tea. As always, the Republic Day was celebrated with fervour and enthusiasm keeping in mind restrictions imposed by Covid-19. The nineth anniversary of our charity shop was also celebrated and we fondly remembered Ms. Leela Sridhar was who conceived the idea of a charity shop and its future role in generating financial resources for Karunashraya.Clinical Posting:As a part of NFPC clinical posting, Ms. Pooja Saikia, a nursing staff at Jorhat Medical College, Assam, joined Karunashraya on March 18, 2021. While at Karunashraya she would undergo intense training till March 27, 2021 and would then return back to her parent institution. The training in palliative care at Karunashraya would eventually help the patients in the north-eastern part of the country. Participation in Conferences and Seminars:Medical staff of Karunashraya attended the IAPC conference, held in online mode, coordinated by AIIMS Patna during March 19-21. Six poster presentations were made by the team Karunashraya and 16 individuals participated in the conference. Ms. Sangeetha, Nursing Tutor, Karunashraya, gave a talk on “Skin care and pressure injury management” in a sensitization program for doctors, which had over 50 participants. Ms. Sangeetha also gave a talk on “Compassion in palliative care” in the National Webinar on World Cancer DayLife-Time Achievement Award :It is a matter of great honor for the entire Karunashraya that our chairman Mr. Kishore Rao received the Life-Time Achievement Award from Vcare.Other Events :Four members of Lions Club of Bangalore (Kanaka Nagar) visited Karunashraya on 27 January to get an insight into activities of Karunashraya in relation to rendering of palliative care, and also education, training and research in this area. Young enthusiastic volunteers, currently students of the standard 11th, from an apartment made videos for the entertainment of our patients and staff. Memorial Day Celebrations:Owing to the raging Covid-19 pandemic, Karunashraya had a brief function on May 1, 2021 to mark the day the first patient entered into Karunashrya for admission. On the occasion, a special lunch was organized for all the employees of Karunashraya.

We escaped the first wave of the pandemic comparatively unscathed. But alas that was not the situation in the second wave. By the middle of March, since all the staff was vaccinated, we stopped the quarantine process and only asked for the RTPCR for those who were travelling. The screening protocols were slightly relaxed for our staff. The caregivers were asked to maintain all safety protocols, but once inside the hospice we were unable to monitor them continuously. We were sure we had shored up all our defences against the covid infection especially after the vaccination, but we were wrong. The second wave affected us badly. Several of our staff got infected, mainly through caregivers of the patients. Many of our staff lost their loved ones to Covid. Some are still suffering the aftereffects of the infection. Few of our patients also got infected and had to be shifted to tertiary covid hospitals so that they could get appropriate treatment. We had to shut down our operations completely for some time to ensure the safety of the remaining patients. Though we were affected badly, that did not stop us from providing care and support to our patients and their families. The homecare operations were halted, but the medicines and consumables that our patients at home required were provided to them at the hospice. Teleconsultation and video conferencing became the new norm. All the employees of Karunashraya have compulsorily undergone through both the doses of Covid vaccine. This was necessary to safeguard patients.

LIVING WITH DIGNITYAs a physiotherapist, I’ve met many extraordinarily determined people – people whose bodies have given up on them but whose spirits refuse to. They have made me understand the astonishing endurance of human will and what it can achieve when challenged. This former high school teacher was no different. When I first met her, she was eating with her left hand, not because she was born left-handed but because the weakness in her right hand made it impossible for her to use it. “She’d rather feed herself with her left hand than be fed,” I thought, impressed by her spirit and dignity. She displayed these qualities in abundance over our subsequent meetings. She had undergone surgeries which had left her partially impaired and with debilitating weakness. But just like I sensed the fighter in her, she sensed that I was not about to give up on her. A strong, unspoken bond began to form between us. I discussed her case with her doctor and outlined my plan of action. I took her into confidence and told her the work that was involved in getting her back on her feet. She was game. She was determined to be active. Most importantly, she trusted me and had confidence in my abilities. As therapists, we rely greatly on patient confidence. The same day that I started her on therapy, she stood up with support. This was a milestone both for her and for me. Though she didn’t take her first steps that day, it was a small moment of victory we savoured together. It’s not that she does not have fears – she faces her fears with effort and determination. When we began her gait training, she dragged her right leg painfully at first but with a few more sessions, she got noticeably better. The task is uphill but I know if I was climbing, I would want her for a climbing partner – someone who doesn’t give up, who rejects defeat and is not afraid of being afraid and yet soldiering on. It’s not for nothing she’s a teacher – she’s teaching me every day.MATHEW JINU SAJIPhysiotherapist

Covid-19 has touched us all in some form or the other. At this time of crisis, Karunashraya has put in place all protocols which would help us serve our patients better and at the same time would not compromise the safety of our patients, caregivers and staff.
June 2020 brought in the first phase of unlock, and with that one of our home care staff got infected which resulted in the closure of home care, since we could not put the life of our patients and staff at risk. With more things being unlocked, there has been a sustained increase in the number of Covid cases in Bangalore. To combat this, we enforced stricter screening protocols; this time screening was in multiple places, at the main gate and the reception. A Covid test became mandatory for all patients and also caregivers who come from containment areas. The staff were also asked to do a regular screening. Later In spite of the fact that Covid-19 epidemic is on a decline, Karunashraya continues to strictly follow the well-established protocols so as to safeguard the interests of its patients and employees. The employees leaving station or visiting crowded areas observe five-day self-quarantine followed by RT-PCR test for Covid-19. The inpatients showing breathlessness and other covid-related symptoms are transferred to the isolation ward and our special medical teams take all care of them. Despite our home care teams having become fully functional, they still avoid visiting red zones having widespread covid infections.

It is a matter of great satisfaction that well-wishers, including donors, continue to support Karunashraya. A big thank you to all of them for helping us in these difficult times.

HOSPICE CARE during Covid 19

The donations we received have helped us to reach out to more patients through our various centres including Homecare link centres & Inpatient centres. Awareness about Karunashraya's services has been spreading and now a steady stream of patients are seeking admission. This also helped Karunashraya to provide food and medicine to the increasing number of patients. We are still running the same program, which is providing free palliative care for advanced-stage cancer patients. However, we have taken the current situation with at most seriousness and reworked on our patient care protocol.

So, we are giving you a glimpse of Karunashraya in the light of COVID 19 infection -

India and the whole world are currently under the grip of a terrible pandemic which has taken more than 50000 lives and affected almost a million people worldwide. As such a lot of restrictions have been imposed to curb the spread of this Pandemic in our country. We at Karunashraya respect these restrictions and also consider it our duty to take the best care of our patients whilst also making sure that they are safe from the COVID 19 infection.
Karunashraya hospice has kept its doors open for our patients, but with certain restrictions. Since all our patients are in an immune-compromised state and also have other co-morbidities along with cancer they are more susceptible to the covid infection, and this may also prove fatal for them. So in order to protect them we have imposed certain limitations on our routine admission procedure. Currently we are taking only those patients who are having a medical emergency like severe pain, vomiting, bleeding, abdominal distention, seizures, breathlessness etc. We have requested all patients, caregivers, and staff with respiratory flu like symptoms to get checked out in a fever clinic/hospital and to self quarantine for 14 days. A strict screening process has been initiated at the entry for caregivers and visitors. Entry of visitors has been constrained to one per patient with limited time for visitation. Letters have been issued to all caregivers who have to come from far and may face restrictions from police.
We have temporarily suspended our home care visits keeping in mind the safety of both our patients and our staff, and also due to the travel restrictions placed by the government. We will restart our home care once it is safe and the restrictions are lifted. In the meanwhile patients are followed up by phone and can come in for OPD consultations/admissions in case of an emergency. We are still dispensing medicines from the hospice directly, for our patients especially those on Morphine/Fentanyl or Buprenorphine and dressing materials for our patients who cannot afford to buy them. They have been requested to send an attender to come and collect as per requirement.

Patients receiving the care and support

Program Update

We are able to provide holistic care with the help of a team of well trained and competent doctor, counsellors, physiotherapist and nursing staff. Our doctors will visit each patient daily along with support nurses and counsellor and review their charts and symptoms for medication and appropriate adjustment of medication. Our Nurses and nursing aides will take care of their physical hygiene and provide feeding support as required. Total In-Patents From Jan to March is 339. Total Home care patients is 307. NUMBER OF HOURS WORKED BY EMPLOYEES FROM JAN’19 TO MAR’19 : DOCTORS CARE- 2844 Hrs, NURSING CARE- 43720 Hrs, COUNSELLING - 3748 Hrs, ADMIN Staffs- 27700 Hrs.

Story from the field

Name: Ayesha Parvin
Age: 38 years
Sex: Female
Counsellor: Sundari
Ayesha had two children- a daughter and a son, both MBAs. She was a painter and a vivacious person. However, ever since being diagnosed with pancreatic cancer, she was quite down. She had a love marriage and had converted to Islam in order to do so. Luckily her family did not abandon her because of this. When she came to Karunashraya, she was shocked and disturbed to see scars and wounds of other patients. Since she had pancreatic cancer, she was not familiar with such outwardly physical wounds. Her initial treatment used to involve chemotherapy but she would never see other patients and would leave the hospital without interacting with them. At Karunashraya, this was different. She would attend Diversion activities in the Activity Room and be very conscious of other people’s wounds. She would be very introverted and would not like to participate in art and craft activities – would make excuses saying her hand was paining etc. She told Sundari that she did not know that cancer could manifest in this outwardly physical way and that she did not like coming to the activity room because of it. Despite this, Ayesha would always have suggestions about the art activities and would always give artistic suggestions. One day, Sundari gave her a coloring book with materials and told her to work on it at home, since she did
not like the Activity room. Ayesha was most pleased and took this up very seriously. She worked excitedly all night and came to the Activity room the next day with a beautiful sketch copied from a book of rhymes. This is now pasted on the wall of the Activity room. In fact, a generous donor has decided to fund the framing of her artwork. She had not disclosed until then that she was a painter! It came about one day organically while Sundari was chatting informally with Ayesha’s son – who works on face detection – and was pleasantly surprised by this information. The Activity room brought out Ayesha’s passion and zest for life. She began to uplift other patient’s spirits by bringing them out of the ward and making them walk and chat and enjoy life. She had accepted the cancer
she had and wanted to live a life that was comfortable and happy. The ward was always cheerful when she was around. She liked the view from the ward because she could see the fountains and also watch her husband going and coming.
Ayesha’s wish was to not die a painful death. She wanted to have minimum pain towards the end and a degree of dignity for her life. And this was fulfilled because she passed away in her sleep very peacefully one morning. Her family had come to visit her the previous evening and when they heard the news, they were very happy that she did not have pain towards the end. Her family is still in touch with Karunashraya. Her daughter remembered her mother in a touching post on social media, in which she wrote about her mother’s zest for life. This is what Ayesha wanted. She wanted for people to remember her that way not as a patient in pain. She had managed to bring up to happy, independent, and successful children.