Palliative Care in Hyderabad

Pain Relief and Palliative Care Society's goal is to provide palliative and end of life care to patients suffering from end stages of cancer and similar life limiting diseases by efficient running of our 24 bed hospice, a home based palliative care program in the city of Hyderabad and environs, a dedicated pediatric palliativ care program and the community outreach program in the rural setup. We have succeeded in our endeavor.  On an average about 65 patients per month are being admitted and treated in the hospice. On any given day 200 live patients are being enrolled in home care. Pediatric palliative care program caters to about 15-20 children with cancer at MNJ Governmnet cancer hosptial. We are catering to 190 patients with variuos incurable diseases in the community by visiting them thrice a week by the palliative care team.

Some of your successes and challenges

Palliative care and end of life care is one of the most challenging fields in medical science. Unlike normal medical treatment provided in various facilities where the treatment is given with a hope of curing the ailment, palliative care is provided for those patients for whom there is no further curative treatment. It is extremely difficult to quantify and measure the outcome of such care. The philosophy of palliative care, centers around providing a holistic concept of care which also varies from patient to patient depending on various factors like progression of disease, literacy level, socio-economic conditions, family dynamics etc and includes psychosocial support, rehabilitation along with medical care.

Our team consisting of trained doctors, nurses, social workers, counselors and other staff have, over the years, mastered the technique of breaking through the barriers of the patients and their caregivers and helping them to cope with the disease and consequences there on at various palliative care delivery. The successes can best me measured by the feedback which we receive from the care givers and the patients.

An example that best illustrates the success of your program(s) and services.

 There are stories- a plenty- which poignantly describe the kind of service provided by our Hospice. One such story is:

 An emaciated female aged about 40 years was brought to the Government Cancer Hospital, Hyderabad and abandoned in the premises. The patient who was semi-clad with bones sticking out and half conscious was referred to our hospice for treatment and care. She was transported in our ambulance to the hospice where the doctor and nurses washed and cleaned her, including removal of maggots from her wound around the breast.  She was properly clothed and fed. It appeared that, she was an advanced stage cancer patient (of the breast) who was deprived of  proper treatment and neglected by her family. After a week of loving care, proper diet and medical treatment, the patient recovered from her traumatic condition and was able to provide details of her family.  Our staff then traced out the family and obtained an affidavit from them which authorized us to look after till the end and also perform the funeral rights in the event of her death. She spent about two months in our hospice where she was given quality end of life care and finally passed of peacefully, without pain, and most importantly in dignity. Her funeral rights were also performed by our hospice staff, again, with full respect and dignity to the departed soul.

This story exemplifies the kind of service we are provide for the poor populace who cannot afford to get quality palliative and end of life care under the prevalent health care system.

Links:

• How-to-deal-with-death-at-home

PAIN RELIEF AND PALLIATIVE CARE SOCIETY

ANNUAL REPORT 2016-17

It is said that a long journey begins with a small step. The journey which started with the first step in June 2007 has indeed come a very long way. From very humble beginnings of supporting the Department of Pain & Palliative care in MNJ Institute of Oncology & Regional Cancer Centre, Pain Relief and Palliative Care Society (PRPCS) is today running four full-fledged palliative care programs catering to patients suffering from life limiting diseases like advanced stages of cancer and providing quality end of life care. The society provides all its services entirely free of cost without charging a penny which is nothing short of a miracle unfolding in front of our eyes! 

Activities Report

Kumudini Devi Hospice, Kukatpally

The year saw considerable upgrading of this 24 bed facility. The open verandah’s and pathways were covered and the flooring was upgraded both inside and outside the premises. The entire premises were colored with a pleasing color scheme providing a homely atmosphere for the patients. A full-fledged trained palliative care doctor, a nursing specialist in palliative care, a senior counselor/ social worker and a qualified physiotherapist have been added to the work force. Each shift is manned with by a doctor, 2 nurses and 2 ayammas. In addition we have also trained and recruited two nursing aides to assist the patients. The small Maruti 5 seater ambulance has been replaced with a large 9 seater Tata Winger ambulance for shuttling of patients between the hospital and hospice and transporting patient’s bodies in the event of death to their respective homes. Hospice has cared for 368 male patients, 323 femlae patients and 57 children. 

Most of the patients are referred to the hospice from the out-patient service of Department of Pain & Palliative Medicine of MNJ Institute of Oncology, while a few come from other corporate hospitals after reading about us on social media. Holistic care is being provided at the hospice which includes medical care, counseling support, food for the patients and their care givers, recreational, rehabilitation facilities and lastly transportation facilities for the dead body in the event of death. An atmosphere of total serenity has been created to ensure that the last days of our patients are spent comfortably and peacefully without pain and most importantly in dignity

Home based Palliative Care, “Life At Your Doorstep”

This is a unique program where our team consisting of a doctor, a nurse and a counselor visit the houses of patients and provide palliative care at their doorsteps. We have four vans covering the four corners of Hyderabad city and outskirts up to a radius of 30 kms. This program essentially caters to patients who live in and around Hyderabad and wish to remain at their homes. However, whenever the condition of the patient deteriorates requiring round the clock care, our home care teams move such patients to the hospice. At any given point of time there are about 160-180 patients distributed between the four vans. The program consists of providing medical care, supportive care, rehabilitation, counseling and occasionally even food for survival to our patients. Home care has seen 417 new patients and 2348 review visits under life at your home care. 

Community based Palliative Care in Chevella Mandal

This is yet another unique program wherein palliative care/ end of life care are being provided in an entirely rural setup. Patients living with life limiting illnesses in a cluster of 30 villages located about 70-75 kms from Hyderabad are provided care. The community program caters to end stage cancer patients and also to patients suffering from wide range of life-limiting diseases like Paralysis, Stroke, Quadriplegia, Renal Failure, Juvenile Diabetes, Cerebral Palsy, Muscular Dystrophy etc.  There are two full time village coordinators from the local community who work on our behalf in the villages. Their role includes identifying patients needing palliative care after a meticulous house to house survey, ensuring continuous follow up, creating community awareness and goodwill in the community. Once identified, such patients are visited at regular intervals by our team of doctors, nurses and physiotherapist who provide the necessary care and guidance. Given the taboos in a typical rural setup, most of these patients are in a state of severe neglect and hence need extensive psychosocial support for both the patient and the care givers. The entire treatment and care including medicines is given free of cost. Other aspects of rehabilitation support like providing nutritional support, providing food for survival, providing calipers for children who are physically handicapped, providing care givers for abandoned patients are also an integral part of this rural program.

Pediatric Palliative Care Program (0-18 years)

Pediatric Palliative Care Program in MNJ Institute of Oncology & Regional Cancer Centre and supported by PRPCS is unique and one of its kind in India. The pediatric palliative care team consists of dedicated palliative care specialist, senior pediatric palliative care nurse, a social worker and other supporting team consisting of play therapists, physiotherapists, occupational therapists and volunteers. Every effort is made to keep the child pain free and to incorporate palliative care into the treatment of the child right from the time of diagnosis. For such of those patients whose treatment has ended, the program provides palliative support to the patients and family members at their homes till the end and extending to bereavement support. Dealing with young children with cancer is a huge challenge and requires specialized skills and training. Our program has cared for 381 new children with cancer and 2763 reveiew patietns with cancer. 

The above statistics does not tell our whole story. Unlike conventional medical care where success is measured by the percentage of patients getting cured, palliative care is a field where it is very difficult to assess and measure outcomes.  The objective of our programs is to ensure a peaceful and dignified death to end stage cancer patients by providing them with state of the art palliative care. A measure of index of the successful implementation of the programs is the feedback which we receive from the care givers of the patients who have experienced the care and treatment which we have provided for their loved ones in the last stages of their life. We therefore encourage all our patients and their caregivers to give a constant feedback which is evaluated by us. 

Our finances:

The cost incurred for running each of the above programs in FY2016-17 is as under:

1. Kumudini Devi Hospice                               Rs. 63,70,000
2. Home Care Program (4 vans)                      Rs. 24,37,000
3. Community Outreach Program                    Rs. 6,66,000
4. Pediatric Palliative Care program                 Rs. 6,71,000

Total                                                                   Rs. 101, 44,000

The society employees a total staff of 44 members consisting of Doctors, Nurses, Physiotherapist, Social Workers/Counselors, Drivers, Cooks, Ayammas, Security guard etc working across the different programs. Salaries account for about 70% of the expenditure followed by medicines, petrol, food and utilities like electricity, water, waste disposal, laundry.

As already mentioned our programs are probably among the few full-fledged palliative care/end of life care programs offered entirely free of cost. We do not charge even a penny for our services and hence are totally dependent on mobilizing donations, grants to meet the expenditure.

We are indebted to our partners, major donors and other individual donors who have consistently supported us. 

Our Partners

Two Worlds Cancer Collaboration-Canada

Roshini Trust

Sivananda Rehabilitation Home

Hyderabad Pain and Palliative Care Trust

Major Donors

Value Labs Foundation

Ocean Sparkle

Karvy Group

Nvidia Foundation

Infor India

Narandas Lakhani Estate

Family of Late Smt. Lalitha Kumari

And numerous other individual donors both big

As with all charitable institutions we recognize the need to constantly look for new donors and sponsors. In order to become totally self reliant we are in the process of building up a reserve fund to dip into whenever the need arises in future.  

Upcoming Project

We are very pleased to state that one of our nursing aides working in the hospice who hails from Chevella village has donated a piece of land measuring 150 square yards to PRPCS for building of a small 6 bed hospice. We hope to complete this project during the current year and establish the hospice which will be among the first few rural hospices in the country and amenable for replicating in other similar rural setup’s across the country.

Thank you!!