Palliative Care in the home

MAI is partnering with the Emmanuel Hospital Association (EHA) in India to expand home-based palliative care run from their Chinchpada Hospital in Maharashta State.  The project will improve the quality of life of patients and families living with life limiting illnesses like cancer, HIV, organ failure and neurological conditions by providing holistic, compassionate and competent care.  It will serve 175 patients and their families with quality palliative care, increase awareness in local communities about the need for such care and train and mobilise 60 volunteers in the home care programme.

The Problem – one person’s story and the big picture

Dinesh (name changed) was 31 years old when he died from oral cancer.  A farmer, he lived with his wife and three school-going children in the village of Nangipada, in the tribal region of Nandurbar.  When the palliative home care team first visited him he was not very happy to see them.  He had developed mistrust for anything to do with hospitals after his bitter experience in a cancer hospital in Mumbai.  He had taken all of his savings there in hope for a cure of his early stage oral cancer.  However, he spent two months roaming around the crowded hospital going from one place after another and awaiting a date for surgery which never came.  Having spent all the money he had brought over two months’ stay in Mumbai, he had to return home.  The local traditional healer had offered him a promise of cure with his herbal treatments.  With all the applications, the swelling and odour only got worse.  The traditional healer had forbidden him to allow doctors to touch or dress the wound, since that would ‘hinder’ the process of cure.  Dinesh continued to refuse help from the home care team but they continued to visit him.

This experience is all too common in India.  Living with an incurable or debilitating disease is often associated with immense suffering, especially in rural India, where diagnosis is often very late and the disease may be too advanced to be treated.   There are an estimated 6 million people needing palliative care in India each year, but less than 1% of these have access to it.  645,441 children on any one day need palliative care and only 0.7% of them receive it. (EHA annual report 2015-16).

There is an urgent need to improve access to palliative care, not only to restore human dignity but also to prevent households falling into further poverty through unnecessary expenditure on healthcare. In India, over 63 million persons are faced with poverty every year due to health care costs. The cost of health care is growing and is estimated to be one of the major contributors to poverty in India. Families with low incomes often succumb to poverty when they are hit with a life-limiting illness like cancer. Without reliable advice, they can incur unnecessary expensive costs.  An EHA survey of palliative care patients found that 69% of households had fallen into debt after a family member had fallen ill.  Also, 85% of households reduced expenditure on treatments and travel to healthcare after joining the home-based palliative care service.  Families are also often unaware of the government social benefit schemes available to support patients with life limiting illnesses.

In 2009, EHA recognized that care of patients with life-limiting conditions was a much-neglected area in India.  They pioneered a home based holistic palliative care service with secondary hospital support in their hospitals in North India.   In 2015, 14,066 patients were provided holistic care by the EHA Palliative Care teams, of which 94% had cancer and 16% had HIV & incurable non-communicable diseases.  An external evaluation of five of these services concluded that the ‘EHA (palliative care) model is being successfully implemented and developed in the five hospitals visited’ and that ‘a high quality of service is being delivered. ’

The Project – building on proven success

This project will be serving villages in one of the poorest districts in Maharashtra State with an estimated 42% of the population living in extreme poverty, with less than $1.90 a day. 

An investment of £92,000 over three years will expand the home based palliative care service of Chinchpada Christian Hospital (CCH)  so that it is able to provide 100 patients with holistic, compassionate and competent care.  Over the three years, 175 people living with a live limiting illness will receive the care they need.  300 family members will be trained to care for their relative.  Public health awareness raising on the prevention, early diagnosis and management options for cancer will reach around 5,250 people.   240 local people will be trained and 60 volunteers enrolled into the palliative care programme.  20 churches will be actively involved also.

A Palliative Care Service at CCH was initiated in April 2016 to improve the quality of life of patients with life limiting illnesses.   It covered an area of approximately 40 villages in the Navapur Taluka block around an approximate 10 km radius.  Extensive awareness programmes in local communities and networking with local practitioners and the Government health system resulted in rapid growth of the previously unknown service.  A total of 61 patients have been enrolled in the programme and 31 patients are currently receiving home based palliative care with in-patient care at the hospital as required. The majority of the patients have cancer but those with chronic kidney disease are also enrolled.

A lot of people with terminal illnesses and their families have found dignity at a very difficult time in their lives’. (Dr. Deepak Samson Singh, EHA Regional Director)

The project will increase the target area by a 20 km radius around the hospital.  The catchment area is being extended to include the neighbouring district of Sakhri, which is under-served in terms of Christian witness as well as healthcare. 

This home care model, with access to inpatient and outpatient services as needed at CCH, the base hospital, enables patients to be cared for in the comfort of their own home and surrounded by their loved ones.  The current team consists of a nurse, a social worker and a doctor.  The home care team will visit the homes of patients in the extended area on a regular basis to provide medical and nursing care along with psycho-social and spiritual support.  The team will provide certain facilities and resources to improve the quality of life for the terminally ill, such as mattresses, adult nappies where necessary and morphine for optimal pain relief.  These commodities are not affordable for a significant proportion of patients.  Bereavement support for up to 6 months is also given to families.

Over the three years of the project it is estimated there will be 370 outpatient visits and 75 inpatient admissions. If required, patients will be transported to government-provided tertiary care services,  helping patients with a diagnosis of cancer to access government-provided services for tertiary care through advocacy and networking with higher medical centres in the State.  In addition, the team will educate families on the different social benefit schemes and how to access them.

The team will not be able to visit patients every day.   So special attention will be given to equip family members to take care of their patient at home.  Family training for 3-4 family members caring for their loved ones will be carried out three times a month (including dressings, oral/back/skin care, care of the bedridden, dietary advice etc.  A three day residential volunteer training programme on palliative care, with support from the hospital, will be conducted for church volunteers every three months, with 15-20 participants per session.  60 volunteers will be sought from local churches in and around the target villages.  Volunteers will also be sought from among the families that have cared for loved ones (previously enrolled in the programme) that may have passed away.

In this rural resource-poor area, cancer is often incurable because of late presentation and limited treatment options.  EHA has found through local awareness raising that they are increasingly recruiting patients earlier than previously, increasing treatment options and the poverty reduction effect on families.  Awareness meetings will be conducted 6-8 times a month with churches, schools, colleges and other community groups regarding prevention, early diagnosis and management options for cancer.

Over the three years the project will care for 175 people with life limiting illnesses, like Denish.  In total around 700 family members living with life limiting illness will benefit from the service also.

DineshDinesh receiving nursing care at home

In a village where this project was begun, Dinesh’s situation improved.  One day Dinesh was in such severe pain that he finally agreed to go to CCH.  At the hospital, the doctor examined him, cleaned and dressed his wound, gently explained the prognosis and the avenues for symptom management and prescribed some pain medication. He felt and smelled better than he had in weeks and was even able to sleep.

Thereafter, he allowed the team to dress his wounds on home visits and willingly took the pain medication.  He slowly began to open up and became friendlier.  His eyes would brighten every time he saw the team approaching.  As his disease progressed, he began to require stronger pain medication with opioids which gave him much relief and peaceful sleep.  The care team also help with Dinesh’s emotional and spiritual pain, gently helping him talk about his feelings and emotions, and encouraging him to speak with his family and friends.

Dinesh has now passed away, leaving a great void in the family.  The team continued to visit the family for bereavement care.

The Cost

MAI will need to raise £30,000 each year for this three year project.

If you would like to help people living with terminal illness to receive end of life care and support, please consider making an investment of £26 a month which will provide one patient with palliative care for a month.  That’s just 85p a day!

If you would prefer to make a single gift, you might like to know that:

  • £26 funds a month of palliative care for one patient
  • £70 trains 3 local volunteers in home based palliative care
  • £310 funds a year of palliative care

We will keep you in touch with progress to help you pray and hear about the impact of your support.

It is hoped that as the projected life of the project ends, the work will be sustained through income from specialised services as CCH, larger Indian city churches and Government funding.