Palliative Care | Community Welfare Society

Home based Palliative Care in Rourkela and its peripheries

Home based palliative care is totally free, irrespective of one’s financial condition.

The services are provided at patients’ home.

Seriously ill patients are covered under the programme based on thorough assessment by a medical doctor.

Programme covers 164 patients in the slums and 92 patients in the non-slum areas of Rourkela.

CVA or Stroke has affected 100 patients, high BP being the major cause for it.

Patients are provided with pain killers, medicines for high BP, diabetes, dizziness and other medical ailments on the prescription of the doctor. Catheters, bandages, air beds are provided free as and when required. Urinary catheters are required for 15 patients, 70 patients require physiotherapy, 15 are critically ill and 30 are bed ridden.

Every patient is visited by the staff twice in a month.

Family members are taught simple physiotherapy exercises by a physiotherapist in the beginning.

Counselling services to the patients and the family is provided by the staff.

The core staffs consist of a medical doctor, two nurses, two auxiliary nurses, driver and physiotherapist.

Project country: India

Project region/place: Rourkela

Planned duration: On-going Project

December 2023

Detailed Project Description

1. Setting of the Project

a. Geographical

The geographical area the project covered in 2021-22 was ten areas in the slum clusters of Rourkela and 14 areas in the non slum areas of Rourkela. Because of the demand for the programme, we plan to extend the programme to peripheries of Rourkela city, namely Kuarmunda, Kalunga, Bondamunda and Jhirpani extensively. With this we plan to cover the entire Rourkela city and its peripheries as best as we can.

b. Economical

At the end of 2021-22 we had 256 patients under palliative care (hereinafter referred as PC) 164 patients were from the slums and 92 patients were from the non slum areas of Rourkela. Out of the 256 Patients 204 were from BPL (Below the poverty line) families and 52 were from APL (above poverty line) families. Among the APL families few are rich, the rest being some what better than BPL families economically.

c. Socio-cultural

The caste composition of PC patients is as follows

Scheduled Tribe - 94
Scheduled Caste - 93
Other Backward Class - 13
General Caste - 56

------------------------------------------
Total - 256

Other than General Caste, the other three groups of people are socially and economically backward. General caste patients are the upper caste patients. Caste data is interesting since caste and class almost seem to move in tandem. Compare 56 families from General caste to 52 people from APL families in economic data.

d. Educational

Literacy level of 256 PC patients is as follows

Illiterate -127
Primary school - 8
Under Matriculation - 69

------------------------------------------
Total -204

Matriculation - 27
Higher Secondary - 6
Bachelor Degree - 19

------------------------------------------
Total - 52

The table above presents a clear picture of the literacy levels of the patients. Although one can’t be too sure about it, literacy levels also seem to show a close link with class and caste data.

e. Who initiated the Project?

Fr. Bennichan K Peter SVD, Secretary of community welfare society initiated the project. CWS runs a 120 bed CWS hospital at Jagda and Fr. Bennichan is also the Chairman of the hospital.

f. How did you assess the need of the Project?

The need of the Project was assessed by observing human suffering due to illness in a hospital situation. It broadened one’s vision about health care and provided confidence to reach out to people who lead painful and pitiable lives due to serious, lifelong or terminal illnesses.

People in general and even many doctors are not fully aware of the principles and practices of palliative care. This lack of awareness is reflected in the negligible effort put in to provide home or institution based specialized medical care to people suffering from serious ailments. Hence there is a need to educate, encourage and enthuse people to reduce human suffering and improve the quality of life for both the patients and their families.

g. Similar projects in the region

PC isn’t a popular concept or practice in Odisha both in Private and Government sector. In our interaction with our PC patients in their homes, we haven’t come across anybody running a similar programme in the region.

2. Target group/ beneficiaries

a. Who is the target group?

The target group is those affected by various serious illnesses and also all those who are bed ridden. They are generally old people of both sexes, but there are also middle aged, young and even children in the target group.

b. How many persons belong to this group?

The project planned to cover 200 people under PC programme in the current year. The project now covers 279 people. The number under PC will fluctuate due to death among patients. This year 43 patients have died. Talking about patients under PC care, we are happy to report 42 patients require only monthly visit by the PC team instead of the fortnightly visit as they are much better now and we were able to remove 6 people from PC list. To get a better perspective of this factor we are quoting from Each Breath blog of American Lung Association dated Dec 1, 2020 titled “Understanding Palliative Care: It is not what you think” “All palliative Care is not the same as end-of-life or hospice care. Hospice care is for patients who are not expected to survive their illness or recover from their condition and are nearing the end of their life. Unlike hospice, palliative care is not limited to people who are nearing the end of their life or have a terminal diagnosis. It is true that people who have life limiting conditions or illness that will lead to the end of their life receive palliative care and transition to hospice when it is needed. However, it is also true that some people with acute periods of illness recover, are cured or achieve optimized management of symptomatic disease and may no longer need palliative care after some time.”

Find attached some photos of patients who have recovered or their distress levels reduced and require only monthly visit by our PC team. In Annexure-1 there are photos, case description and the present status of 4 such patients. Because of growing demand for home-based PC programme, we are extending the project to peripheral areas of Rourkela and will cover 400 patients under the project this year.

c. Why was the target group chosen?

The only criterion for selecting a person for PC is the serious nature of illness which is ascertained and certified by a doctor after thorough medical examination.

3. Problem Analysis

PC is meant for people suffering from diseases like cancer, kidney failure, liver failure, heart problems, stroke and paralysis, age related frailty, dementia and Parkinsonism, AIDS, drug resistant Tuberculosis and any bed ridden patient. These illnesses cause a variety of problems for patients. These problems are health related, psychological, social, spiritual and economic. Health related problems the patient may suffer from are severe pain, reduced mobility or immobility, muscle wastage, urinary retention, incontinence, constipation, nausea and vomiting, loss of appetite, sleep difficulties and bed sores. A patient may suffer from all these problems or some of them. Psychological problems like anger, rejection, depression and loss of mental equilibrium are common due to brain degeneration, severe pain and lack of concern by near and dear ones. Prolonged illness promotes social problems like witch-hunting and killing of suspected witches, use of irrational and superstitious practices prevalent among people like divination, animal sacrifice and exorcism. Spiritual problems like loss of faith in God and humanity and feeling of emptiness and meaninglessness in life is a common phenomenon. A seriously ill patient is a severe economic strain whether the family is rich or poor.

People who suffer from these problems and their families are generally unaware how PC can improve the quality of their lives. Even if some are aware, facilities for home based or institution-based PC are meagre or non-existent in the project area.

4. Strategy

4(a). Overall objective

The overall objective of the project is to improve the quality of life of the patient and bring relief to the patient and the family. The project does not aim at solving all the problems which is impossible but rather ameliorate the condition of the patient. This will be achieved by providing relief from health-related problems and dealing with psychological, social, spiritual and economic problems faced by the patient and the family. Our PC team will consist of a medical doctor, three nurses, three nursing assistants, a physiotherapist and a driver. At present the doctor and two nurses and two nursing assistants are transported by a jeep to the patients’ home. Where the patients’ homes are at distant places in the same area, the services of an auto rickshaw is also used by a nurse and the assistant to reach the patients home. Next year as we are extending the project to peripheral areas, and adding two more people to the nursing staff, the present jeep won’t be able to transport them to the homes of the patients. So we will experiment with hiring an auto rickshaw on annual contract to transport two nursing staff to peripheral areas and observe how it works in controlling the cost and helps in the effective delivery of services to the patients in their homes.

Patients who require PC are visited by the nurses and nursing assistants. If the patient is found to be a suitable candidate for PC, the doctor pays a visit to the patient for a thorough medical assessment of the person. Each assessed patient will be given a patient diary. Home based PC services will begin only after initial assessment. The diary will have all the relevant information about the patient’s illness and the problems arising out of the illness which require PC intervention. Each visit of our PC staff and the services rendered will be entered in the patient’s diary.

Physiotherapist will visit the patient and will teach the family members how they can help the patient do physiotherapy exercises at home through live demonstration.

Our PC providers will deal with all the problems faced by the patients and their families. It is clearly understood that no one can solve all the problems of the patients. What is attempted is to lighten their burden so that their quality of life improves.

Patients enrolled in the scheme will be regularly visited by our staff. They will always have a kit with them with necessary medicines, catheters, dressing materials, diapers, I.V. bottles and other medical consumables to deal with health problems like severe pain, urinary retention, incontinence, constipation, nausea and vomiting, sleep difficulties, loss of appetite and bed sores. Patients suffering from pain will be given appropriate pain killers as prescribed by the doctor. Patient and family counselling will be done to ease psychological problems like anger, rejection and depression by our staff who are trained in PC and have experience in dealing with patient and families for the last two years.

When faced with serious tragedies, people fall back on culturally deep-rooted belief in witches and malevolent spirits. They deal with the problems through witch hunting, divination and appeasement of evil spirits. Our PC team will try their best to reduce the impact of such beliefs on the patient and family through sensitization and counselling.

People find it easy to believe in divine providence once they are healthy and wealthy. People who are ill and penniless are often unwanted and uncared for. Such people feel abandoned by GOD, family and friends. During this intensely painful experience of abandonment, we hope to bring the message of God’s continued care and human compassion into the lives of PC patients though our work and our words.

Home based PC services will be completely free. A seriously ill patient is a heavy economic burden on the family. By making the services available free of cost to all patients we hope to reduce the financial strain on their families. However, we will seek donations from the Community to make the PC project economically viable in the long run. Though our experience in raising donations for PC has been disappointing, we do not lose hope and will work at it with renewed vigour in the coming year and have prepared a short video to sensitise people towards the condition PC patients and what we are doing to relieve their distress.

Long term implication of the project for the region and the beneficiaries.

The concept of PC is unknown to most of the patients and their families. The relief and improvement which PC brings in the lives of patients and their families will popularize the concept of PC in the general population. This will make people demand accessible PC facilities from the government. More awareness will lead to better care of the patients by their families. It will encourage people to donate towards PC efforts and enthuse them to work as volunteers in the field of PC.

4(b). Project results

Results

Activity

Indicator

Time

Resources (costs)

Cover 400 patients under PC project

Medical assessment of new patients admitted to PC project

Delivery of medical and other services

New patients covered under physiotherapy

Transportation of PC staff by jeep

Transportation of PC staff by auto rickshaw to peripheral areas

Appointment of 3 nurses and 3 nursing assistants

Appointment of a part time doctor

Done by PC staff

Done by physiotherapist

Appointment of a driver for the jeep

Hiring an auto rickshaw on annual contract

Number of patients covered under PC

Number of new patients assessed and admitted to PC

Number of patients visited, frequency of visit and the kind of services rendered to 400 patients

Number of new patients visited by the physiotherapist

Number of trips made by the jeep and the number of patients covered under PC

Number of trips made by auto rickshaw and the number of patients covered under PC

Dec 2023

Salary to nursing staff covered by project fund

Part time Salary of the doctor covered by project fund

Cost of medicines and medical consumables covered by CWS

Part time salary of physiotherapist covered by project fund

Salary of the jeep driver covered by CWS Fuel and vehicle maintenance cost covered by project fund

Cost of hiring an auto rickshaw on annual contract covered by project fund

5. Project Budget

Sl. No

Particulars

Amount in INR

10.

11.

Part time salary of a doctor

Salary of 3 nursing staff @Rs.16,000 x 12 x 3

Salary of 3 nursing assistants @Rs. 11,000 x 12 x 3

Payment to physiotherapist according to the visits to patients

Salary of driver of the jeep @Rs. 13,500 x 12 x 1

Fuel for the jeep

Vehicle maintenance

Stationery

Monitoring and evaluation

Medicines and consumables

Hiring charges of an auto rickshaw on annual contract

Total

1,50,000

5,76,000

3,96,000

50,000

1,62,000

1,50,000

35,000

15,000

10,00,000

2,20,000

27,69,000

Gallery