Palliative (hospice) care is an area of healthcare that focuses on relieving pain and preventing unnecessary suffering of patients, whether the diseases are chronic or life-ending. In India, with some improving standards of living, disease patterns are changing. Life-limiting diseases, such as cancer, HIV/AIDS, and heart disease, are increasing. Despite this transition, there are 19 states and union territories in India where there is no evidence of palliative hospice care. In 2010, EHA began the only home-based palliative care program in the state of Uttar Pradesh, which numbers some 200 million people. The needs are overwhelming, but the staff press on to help people, one by one. The program’s main goal is to work with families to improve the quality of life of the patient by relieving pain, managing distressing symptoms, and providing psychological, social, and spiritual support as much as possible in the home environment. The practical implications vary from patient to patient. Through the varied means of assistance the Palliative Care team is able to provide for individuals, they are helping one person at a time. As they share essential medicines and model sensitive basic care, they are also able to share the about God, bringing hope to the suffering and dying.
The Palliative Care Approach
Restoring Sanity, Sleep, and Appetite
by Dr. Honeysh George and Dr. Ann Thyle
Panchu, age 60, came to the outpatient department of EHA's Kachhwa Christian Hospital. He was discovered in a nearby village by Mr. Sujit, a hospital community health worker. His head was entirely covered with a very dirty and foul-smelling towel that masked a large swelling on the right side of his face. It had been growing for the past two years. His eyes brimmed with tears as he shared about the constant intense pain that robbed him of his sanity, sleep, and appetite. He knew he had cancer, having been told at hospitals in Varanasi and Allahabad but, as is often the case in these villages, he refused treatment because of the exorbitant and impossible expenses for investigations and treatment.
When Dr. Honeysh went to meet Panchu at his home, he came to a small cow-dung covered courtyard of an old one-room mud hut. The dwelling accommodated Panchu's wife, Godhna, one son, and four daughters. One daughter was married with three small children. Godhna and their daughter, Sita, worked seasonally on landowner's fields, which was their only source of income. The family was just trying to survive, so cleanliness was the last thing on their minds. Apart from the general mess, the foul smelling drip from Panchu's wound made it all the more miserable for the family.
Dr. Honeysh and Sujit spent time with Panchu, outlined his goals of care, provided pain medication, and dressed the wound. When they met him a few days later, Panchu said, "At last I can eat and sleep well without much trouble. If my pain was worth 1 rupee then, now it's just worth 20 paise (1/5 as much)." There was great happiness and rejoicing among all of the family members. Although his wound is becoming larger and there is more discharge, Panchu is living almost pain-free, knows how to dress the wound himself, and looks forward to the doctor's compassionate visits during which he is also supported spiritually. Much more work needs to be done to find ways to help this large family with better livelihood options and the opportunity for the younger children to attend school, but at least EHA is able to provide the best possible end-of-life care for Panchu.
Through Palliative Care ...
Trying to Ensure a 'Good Death'
by Dr. Ann Thyle
Mohammed (45) had advanced head and neck cancer, and spent his days and nights screaming in pain. Once EHA's Palliative Care team found out about his situation and began to administer morphine, he found relief and was able to die at home, pain-free. This was a great comfort to his wife and four children in the midst of their grief.
Operating out of nine hospitals and one project in Delhi, EHA's palliative care services strive to improve the quality of care, affordability of services, and community engagement for those who are dying in the most neglected rural north Indian areas. EHA's services attempt to incorporate the principles and components of a 'good death' as outlined by the End of Life Care Policy for the Dying. This includes having access to information and expertise, dying with dignity and privacy, providing pain and symptom relief, choosing the place of death and who is present, and having time to say goodbye.
Raghuveer (20) was cared for by the Palliative Care team of EHA's Harriet Benson Memorial Hospital in Lalitpur, Uttar Pradesh. He and his family were kept well informed during the terminal phase. Raghuveer chose to die in the hospital with well-managed symptoms. Surrounded by his family, he died peacefully and painlessly after bidding farewell to his family and team members. Our Palliative Care teams' goal is that a 'good death' will be the norm for all our patients.
According to a study of the status of palliative care in 80 countries, India ranked 67th with a very low score of 26.8%, with human resources, affordability of care, and quality of care being among the worst aspects. Provision of palliative care in India is poor with the positive exception of the state of Kerala in South India. Nationally, progress is slow and there are major shortages in specialists and facilities. Non-govermental organizations work to fill the gaps in public services. Subsidies vary across different states, and most state budgets fall far short of the significant needs. Excessive bureaucracy severely limits access to pain medication. On the whole, most terminally ill Indians are unaware of their palliative care options and do not benefit from pain alleviation prior to their deaths.
The Vicious Partnership Between...
Poverty and Sickness
by Dr. Ann Thyle
It has been rightly said that "poverty and sickness form a vicious partnership, each helping the other to add to the miseries of the most vulnerable in our country." Different reports cite that 22 to 29 percent of Indians live below the poverty line. While the International Poverty Line is income less than $1.25 per day, and the US poverty line is less than $2 per day, the Indian poverty line is less than 27 rupees per day. This means that this huge group of people are each living on the equivalent of 40 US cents a day.
Who falls into this category? They are mostly tribal people, the Dalits (untouchables) and the labor class including farm workers in villages and daily wage earners in cities. Sixty percent of these people reside in the north Indian states of Bihar, Jharkhand, Uttar Pradesh, Chhattisgarh, Madhya Pradesh, Odisha, and Uttarakhand, since 85 percent of India's tribal peoples live in these states. This is precisely where the hospitals of the Emmanuel Hospital Association are located, serving the communities with affordable health care, community programs, and palliative care, a service that is trying to contain and prevent household poverty.
Ram Swarup (54), a cancer patient cared for by the Palliative Care team at EHA's Broadwell Christian Hospital in Uttar Pradesh, received free in-patient care, a blessing for this farmer who cannot work and whose family of six is being supported by the meager income from his only son's daily wages.
Pinky (34) was also impoverished by futile cancer treatment, and is being cared for by the Palliative Care team of EHA's Madhipura Christian Hospital in Bihar. When the team found them, her family of 11 was in extreme pain from hunger, the six children were unkempt, and her husband was overwhelmed as the only wage earner. The Palliative Care team was able to give sound and helpful advice on future treatment and possible government benefits they can access. They will also provide home care that will reduce treatment costs.
One Man's Story...
Illness Causes Destitution
by Dr. Ann Thyle
Gauri Shankar (28) lives in Budwar village, 10 kilometers from EHA's Harriet Benson Memorial Hospital (HBMH) in Lalitpur, Uttar Pradesh. He lives with his wife Sudama (26), a daily wage laborer, their two schoolchildren, Khushboo (10) and Darshan (8), Gauri's mother, and his mentally challenged brother, whose infirmity started ten years ago following a head injury from a physical fight with his uncle. The family was fairly well off farming five acres of land that allowed them to live in a good house and have sufficient food.
Everything changed in January 2015, when a blister on Gauri's tongue was diagnosed as cancer after numerous visits to local practitioners. Later he underwent chemotherapy at the nearest Regional Cancer Center. The family sold all their land to meet medical costs and began trying to survive on Sudama's wages alone. When the Palliative Care team of HBMH visited Gauri's home, they found a completely destitute family existing on one meal a day, the children withdrawn from school and in torn clothes - a truly pitiable state brought on by the unexpected illness of the main wage earner.
The team now provides monthly food supplies for this family and will open a tea shop that Gauri can run for as long as he is able. They are also exploring how the children can return to school. Without such efforts, numerous rural families are pushed into a degree of poverty from which it is impossible to emerge.
At Chhatarpur Christian Hospital...
Training Link Nurses Improves Care
by Dr. Ann Thyle
Chhatarpur Christian Hospital, a 150-bed facility, has provided compassionate care to the people of Chhatarpur and the surrounding villages for more than 80 years. The total population of the district (like a county in the US) in the 2011 census was 1,762,857 with just 64.9% literacy. The villagers are socially and economically backward, with little knowledge about healthy lifestyles or access to good quality healthcare.
Started in 1930 as the Elizabeth Jane Bell Stephenson Memorial Hospital, Chhatarpur Christian Hospital presently has a staff of 182, of which 74 are nurses, 8 are doctors, and 1 is a dentist. It also runs a School of Nursing and a vibrant Community Health and Development Project.
The Palliative Care service was started in May 2014, supervised by a trained nurse with a master's degree and run on a daily basis by two nurses trained by the Indian Association of Palliative Care with valuable input from the Community Project manager. Although it is mainly a home-based care service, doctors are available for inpatient and outpatient care. Tutors from the Nursing School assist in practical family training. Large-scale awareness programs are held in village communities and schools with village leaders. Some of the initial comments we received, such as, "Please start this service as soon as possible," "This is the first time we have heard about such an opportunity for the terminally ill," and "If a person has cancer, he will die anyway" have now been dispelled by sharing information and providing subsidized care.
Since the inpatients are scattered in different hospital wards, a 'Link Nurse' training program was initiated whereby senior ward nurses had a three-day training session in palliative care. This model was first piloted at EHA's Baptist Christian Hospital in Tezpur, Assam.
The goals are:
- To improve palliative care provision within the hospital
- To improve links between the palliative care staff and the nurses serving on the wards
- To equip nurses with knowledge and skills that can help them to provide care to patients admitted on the wards
- To distribute and use clinical protocols
- To use a categorization system for patients
Our hope is that improving accessibility to palliative care in a large hospital through Link Nurses will improve care, and that knowledge about palliative care will increase in the hospital so that more patients will have access to this service.
Through the Palliative Care Program...
Bringing Dignity to the Dying
Palliative care isn't something people want to think about - until one of their loved ones desperately needs it. Also called hospice or end-of-life care, palliative care is designed to make patients comfortable in their last days. In the United States, patients often have multiple options for this type of care. But in India, the options just aren't there. Palliative care is almost non-existent in rural North India where medical cures are often impossible because patients wait too long to seek treatment, or have limited treatment options, or just live with extreme poverty. Less than one percent of the 34 million people who need such care have access.
Into this bleak situation came EHA. After two years of prayer, Dr. Ann Thyle developed a palliative care program at Harriet Benson Memorial Hospital in 2009. She began with just one nurse and a desire to treat the whole person - emotionally, socially, spiritually, and physically. They sought out the terminally ill in numerous villages and found that dying patients often are filthy, in pain, and alone. There is such a social stigma for those who are ill that few will admit to having sick relatives. Only after holding awareness meetings about serious illness in the villages do people start to share that they know someone in that type of situation.
Typically, when a person is diagnosed with cancer in India, they go to a cancer center where they are told to pay $2,000 for 6 chemo treatments. These people make $1 a day just to support their families, so there is no way they can pay this amount. The person just goes home to deteriorate and die. The rest of the family must keep working to meet basic needs, so the patient is left on his/her own. Families have no idea how to bathe, dress wounds, and otherwise care for their sick loved one. The palliative care team comes in and teaches the family how to do these things and also provides pain relief in the form of medication. They bring dignity to these patients' last days.
In Several EHA Locations...
EHA Palliative Ministry Expands
Palliative care is an area of healthcare that focuses on relieving pain and preventing unnecessary suffering of patients, whether the diseases are chronic or life-ending. In India, with some improving standards of living, disease patterns are changing.
Life-limiting diseases, such as cancer, HIV/AIDS, and heart disease, are increasing in incidence. Despite this transition, palliative (hospice) care is almost non-existent in north India, where cures are often impossible due to late diagnosis often complicated by oppressive poverty. Less than one percent of the 34 million people who need such care have access.
In 2010, EHA began the only home-based palliative care program in the state of Uttar Pradesh, which numbers some 200 million people. EHA now offers Palliative Care at its locations in Lalitpur (U.P), Fatehpur (U.P), Dapegaon (Maharashtra), Tezpur (Assam), and now two new locations -- Raxaul (Bihar) and Utraula (U.P).
The needs are overwhelming, but the staff press on to help people, one by one.
At Broadwell Christian Hospital...
Physical and Spiritual Needs Met
She came to the outpatient department of Broadwell Christian Hospital (BCH) with uncontrolled bleeding. The diagnosis: cervical cancer.
Fifty-eight-year-old Kusum Pandey went on to have major surgery at another hospital as well as some radiation treatments, but soon the doctors told her there was nothing more that could be done. When she returned home, the Palliative Care Team at BCH took over her care. Providing symptom relief and pain management, the team was able to care for her physical needs. Because of this, they had the opportunity to share the Gospel with her and address her spiritual needs as well. Her family appreciated the prayer support and doors are open to further communication.
|Dr, Sunitha, Kusum Pandey, and Nurse Lata
EHA Palliative Care Team:
Relieving Pain and Suffering
Kamala Jain before treatment
She couldn't even straighten her body to lie flat due to severe abdominal pain. Kamala Jain had cancer of the gall bladder and had been treated at another hospital and given morphine for the pain, but it wasn't working. Realizing that she wasn't absorbing the morphine, the Palliative Care team added two other medications, and within 24 hours, she was able to lie flat and even regained her appetite. Due to the advanced stage of her disease, she died peacefully at home a week later.
Care for the dying and terminally ill is rare in North India. In the state of Uttar Pradesh alone, which numbers 200 million people, EHA provides the only home-based palliative care programs. The needs in this area are huge. Focusing on relieving debilitating pain and preventing the suffering of patients, palliative care deals with both chronic illness and life-ending situations. The Palliative Care teams seek to improve the quality of life for suffering patients by providing medical, emotional, and spiritual support.
Through Food, Training, and Care...
Palliative Care Team Brings Hope
Practical help from the Palliative Care team takes many forms. They provide food and hygiene products for six months for the most needy families who lose their main wage-earner. Income generation is often at the forefront of families' minds when they lose a parent. So a small tailoring center was opened to teach relatives to acquire sewing skills in order to bring home much-needed pay. Older children attend this center, and when they reach a certain level of proficiency, the Care team gifts them with a sewing machine and helps them set up their new venture.
One family taking advantage of this sewing training lost their 30-year-old husband and father to tongue cancer.
Before he died, Rameshwar Prasad begged the members of the Palliative Care team who were treating him to take care of his wife and four children. His wife has since been employed as a cleaner at an EHA hospital, his sons have been enrolled at a boarding school to receive a high quality education, and his older daughter is enrolling in the tailoring classes so she will have skills to add to the family income.
|Rameshwar Prasad and family
Another man, Nanhe Das, received help of a very different kind. The team discovered him -- paralyzed, filthy, and despondent. They cleaned him
up and brought him to the hospital for medical, emotional, and spiritual support. Then the Palliative Care team went to work to complete paperwork, obtain needed signatures, and pick up a hand-propelled tricycle that he can drive with his arms. The mobility this will provide him is priceless.
Nanhe Das and his cycle
While providing such practical help, the Palliative Care team can also share the gospel of Jesus Christ to bring real hope to these struggling people.