Full attentive care till the moment you die
- Sujata Devadas, March 27 2021
Receiving attentive care upto the last breath, till you can feel no more, is everybody's wish. Realising this, Kishore S. Rao, the current chairman of Indian Cancer Society Karnataka branch (ICSK), hired auto-rickshaw driver Somashekhara Chari to drive Counsellor Usha Shinde and registered nurse Sister Jose Mary to visit the homes of advanced terminally ill cancer patients to give palliative care free of charge in Bangalore.
That beginning in March 1995 evolved into the Karunashraya hospice that gives round-the-clock free palliative care since May 01 1999 to inpatients with advanced incurable cancer.
A nurse attends to a patient at Karunashraya hospice, located on Varthur Main Road, Bangalore
Total number of patients in Karunashraya's care since it began this service on May 01 1999
“Just one home care team would spend hours commuting across the city. So Karunashraya has 3. One attends to patients living in Whitefield area. Another team is based in Jayanagar, a third one in Kalyan Nagar. Our plan is to expand home care further.”
- Kala Devarajan, Treasurer Trustee, Karunashraya
“It is attentive quality of care given with empathy and humility that gives a patient satisfaction, to die peacefully with dignity” says the hospice’s CEO Mathew George Chandy. “Karunashraya’s 3 separate home care teams visit the residences of terminally ill cancer patients. Each team has nurses, nursing aides and a counsellor. They all fit together because each one fills a specific role to give complete palliative care.”
Accepting the end
To accept reaching the final stage of life, patients need a counsellor’s assistance. Patients cope with a full tornado of emotions. Ameliorating this total pain - a matrix of physical pain, psychological pain, low self perception, social and spiritual pain that interlink with each other - is definitely at the top of Karunashraya’s 6 counsellors’ list.
Reducing that pain and anxiety involves many different therapies: diverting the patients’ mind with live entertainment, games and craft work, reconciliation with estranged family members, settling disputes, counselling the patient’s family as well as saying goodbye. So far, fulfilling patients’ wishes has included the wish to see a pet goat, the wish to eat Biryani at an Iftar feast during Ramadan, the wish to witness their son’s/daughter’s wedding before they die and countless other unexpected non-medical requests.
Prior to the advent of COVID19, nurses that accompany in-patients observe student volunteers engage them in arts and crafts therapy.
Senior Counsellor Poornima Prakash counsels a family member
Assisting the patient includes bereavement counselling and supportive care for the family once the patient’s life comes to an end. Corporate donors, NGOs, volunteers, friends and family members play a decisive role in providing sustainable economic solutions and strong social support for the deceased person’s family. The aim is to set the patient’s mind at rest.
Gateway to altruism
Karunashraya’s Medical Director Dr. Nagesh Simha’s advocacy for altruistic palliative care has reached across community, state and the nation. His advocacy resulted in the proper implementation of The Narcotic Drugs and Psychotropic Substances Act’s (1985 NDPS Act) 2014 amendment. Earlier, strong opioids prescribed by doctors was tied up for so long in bureaucratic delays that it did not reach the patient in time. Now if doctors prescribe medications with morphine, fentanyl, methadone and buprenorphine that fall under NDPS, registered medical institutions can obtain them more easily.
“Nursing care is the backbone of healthcare at this hospice. Nursing aides working at Karunashraya play a vital role,” says nursing tutor Registered Nurse and Midwife (RNM) Sangeetha N who runs the free in-house intensive structured course for nursing aides.
Lack of finance prevents many school graduates in India from doing any kind of vocational or career based training. Karunashraya tapped into this resource pool from 2002 onwards to select higher secondary education graduates in different Karnataka villages and give them free nursing aides training. The hospice funds their food, uniforms and accommodation. Trainees get a monthly stipend through the rigorous 6-months course. 299 trainees in 29 batches have completed this course. Discussions to include men in the nursing aides course are on.
“At such an advanced stage of cancer, each patient requires bedside care from properly trained nursing staff. Complete patient care is done by the nursing aides trained here,” says Sangeetha. “A major part of palliative care is to attend to malignant or fungal wounds. They smell foul without proper dressing. The full credit for meticulously dressing these wounds goes entirely to nursing team.” Nursing superintendent RNM Sister Rose Mathew heads the nursing staff and oversees daily nursing care. Mrs. Bindu Shibu, Sister Rose and 3 more Holy Cross Sisters are in charge of different wards at Karunashraya.
Hygienic dressing of wounds is part of the daily nursing service given by the hospice to patients
70% of patients that benefitted from this hospice’s care had head and neck cancer. A high percent of female patients had breast cancer. A lesser number had cancer of the cervix. Patients with lung, pancreatic, liver, lymphoma and renal carcinoma have also received Karunashraya’s care.
Even in the last few days of life, some patients gain from physiotherapy. “At times, bedridden or immobile patients can still do minimal movements,” says the hospice’s physiotherapist Mathew Jinu Saji. “Light exercises help them maintain self reliance or improve their mobility. Assistive devices like a crutch or a walker and encouragement alters the patient’s ‘bedridden’ state if they muster the ability to sit, stand and even walk.”
Radiotherapy or oral cancer inhibits some patient’s ability to open their mouth properly. It is painful but with a lot of cooperation from the patient, ice cream sticks are inserted between the upper and lower jaw to help them open their mouth more. Facial massage also helps. Regaining the ability to chew their food and swallow it, the ability to talk and articulate better - eat on their own, dress themselves - bolsters patients’ confidence. It means a lot to the relatives attending to them. Recovering their self-reliance encourages a few patients to go home. They return only when the disease progresses.
Draining body fluids like phlegm that collect inside a patient, increasing blood supply in an area, reducing swelling and pain are done using different non-pharmacological methods. Under the physiotherapist’s guidance, nurses move the muscles and joints of bedridden patients so that muscles don’t atrophy and the patient’s joints don’t become stiff. To keep their spine flexible, assistive equipments like the hoist device move immobile patients from the bed to a wheelchair and the tilt table enables them to stand.
It is now part of the national cancer control policy.
All cancer treatment centres must have a palliative care department.
Words of gratitude spread through the patients’ families, friends and acquaintances. Rising number of patients from higher income classes now seek the hospice’s in-patient service and home care.
Karunashraya learnt many lessons from years of experience looking after patients with advanced incurable cancer. These lessons were imparted to healthcare personnel and counsellors while they underwent training to establish palliative care units in Shimoga, Chennai, Puttur, Nagpur, Kalyanpur, Vellore and Mangalore at hospitals or as a standalone hospice.
Karunashraya has given professional training in palliative care to a doctor and two nurses in each district hospital of Karnataka. The hospice has educated Army medics, BSc, MSc nursing students, MSc psychology, sociology, Masters in Social Work, clinical psychology, healthcare professionals from other states of India in this specialty.
BHT members (l to r ): Kala Devarajan (Treasurer Trustee), Dr.S Nagesh Simha (Medical Director ),
Gurdeep Singh Randhawa ( Managing Trustee ),
Kishore S. Rao ( Chairman )
A new building, the Karunashraya Institute of Palliative Care Education and Research (KIPCER) wing will open this year, next to the Karunashraya hospice on Varthur Main Road. The hospice is built on 5 acres land leased by Karnataka government to Bangalore Hospice Trust ( BHT) for 30 years. BHT - comprising of 5 members from Indian Cancer Society Karnataka Chapter and 5 members from Rotary Club Indira Nagar - founded Karunashraya hospice and told the state government it would run the palliative care service funded solely by donations. 21 years later, it still honours that vow attending to 73 inpatients in 6 wards. It hopes to do more.
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Dr. Rajeswari Kunjamma
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Wonderful article, well written.
Hats off to he dedicated volunteers of Karunashraya .
Very well written.
The Karunashraya initiative.