“Love begins by taking care of the closest ones, the ones at home” said Mother Teresa
Palliative care is a specialised care provided by organised and trained healthcare workers for those people who are suffering from serious illnesses. The goal of the palliative care programme is to provide relief from pain and other symptoms that bothers the patients and thereby improving the quality of their life.
This article is about the various services offered as part of the palliative care programme at the grass-root level of healthcare sector in India. If you are unaware of the services offered by the palliative care programme that is being implemented at a government hospital near your place, this article will definitely help you. If you have someone in your home who is bed-ridden or is suffering from a terminal illness, and if you need any kind of support in taking good care of your loved one, please continue reading.
LAST UPDATED: October 8, 2016 being celebrated as the World Palliative Care Day (second saturday of the month october every year).
The year 2005, can be marked with golden colours in India’s healthcare sector. The National Rural Health Mission (NRHM), now shortened to National Health Mission (NHM) was launched in that year. With NHM, money started flowing into the veins of the healthcare network in India. There has been dramatic improvements in the basic infrastructural facilities which has been made available even at the lowest level of the healthcare pyramid. Many new national healthcare programmes were initiated, thanks to NHM. But, it was only in 2009 that the Palliative Care Programme was given importance. Since then, this field has witnessed many changes. Our panchayat also changed it’s outlook on the palliative care field in those years.
Palliative care services were first provided at our Primary Health Centre 7 years ago. From 2009 to 2013, the main services provided by the palliative care programme was just “home care”. During these four years, the healthcare team who conducted house visits to provide palliative care to the needy patients were deployed by the Community Health Centre under which our Primary Health Centre (PHC) works.
In 2013, a new Palliative Nurse was selected after conducting interviews. She was sent for a three months duration training course at the Institute of Palliative Medicine in Kozhikode, Kerala. With the appointment of the palliative nurse, we started to conduct house visits with our own Multi Purpose Health Workers (MPHW) and ASHA (accredited social health activist).
Every palliative home care day starts at the PHC. The palliative nurse collects all the supplies that are required for that day’s home care from the PHC. Vehicles are hired for conducting this programme . The other members of the palliative care team joins the nurse either at the PHC or from their respective areas where the home care for that day has been planned. The team visits a maximum of 8 to 10 patients who needs palliative support every day from 9 am to 5 pm.
Examples of patients seen by the Palliative Care Team
- Bed-ridden patients like those suffering from different types of stroke, those who have sustained traumatic injuries that can lead to paraplegia, hemiplegia, quadriplegia etc
- Patients who have lost their one or more limbs as a result of disease or accident
- Chronically ill and old aged patients
- Patients suffering from terminal diseases like advanced stages of cancer where no other treatment is advisable
- Patients who don’t have anyone to look after them at their homes
- All other patients who have registered for home care because of the difficulty in taking the patient to the hospitals.
Our Palliative Home Care Team
At our PHC, we conduct palliative home care programmes on four days a week. The healthcare team who visits the houses for providing palliative care services includes :
- doctor (one day a week)
- community palliative nurse
- one field staff, either a male or female MPHW (multi purpose health worker)
- one or more ASHA who belongs to the area where the programme is being conducted
- palliative care volunteers
- ward member of the concerned area (note that ward members are politicians & their services are confined to the action plan only!)
- vehicle driver, who has now become an active volunteer!
The main work of the healthcare team providing the palliative care services to the needy is to help them in all the ways they can possibly help. This includes medical, mental and even financial support.
Medical care provided includes :
- Medicines and drugs are given for pain relief free of cost. Morphine is also given to some patients when prescribed by the doctor.
- Changing wound and other surgical dressings
- Care of bed sores
- Medical examination of the patient by a doctor in the team once a week.
- Inserting and changing urine catheters, urine bags,
- Inserting and changing naso-gastric feeding tube
- Administering intra-venous fluids and other injections
- Care of in-situ tubes like tracheostomy, colostomy etc
- Providing oxygen cylinders for use at home
- Providing instruments like water bed, air beds, wheelchairs, crutches, tripods, walking sticks, walking supports, sitting commode, urine collecting pans etc free of cost.
- Monitoring blood pressure and blood glucose values in case of Hypertensives and Diabetics respectively.
- Educating the patient’s relatives and by-standers on how to give proper palliative care.
- Giving ambulance support to patients by taking them to nearby hospitals in case of emergency situations.
- Cleaning and Bathing the bed-ridden patients (if needed)
Even if the patient is at the terminal stage of a killer cancer, a few soothing words by the palliative team can prove to be very helpful. Sometimes, spending a few minutes without any soothing words helps in motivating the by-standers emotionally. I have been a part of the palliative care team for many years now and have lent my ears to listen to what these patients say. I have evidenced many instances where the patient waits days and weeks for the palliative care team to arrive just to spend a few minutes with them.
Where does the Money come from?
The palliative care programme has been made a compulsory project to be implemented by the Medical Officer of every panchayat in Kerala. Projects are prepared by the Medical Officer of the PHC, taking into consideration the vehicle hiring cost, fund required to purchase medicines, supportive instruments like wheelchairs, air and water beds etc. The palliative nurse’s salary is also met from the LSGD fund by including it into the project. Refreshment costs for the palliative care volunteers can also be met from this same fund!
For example, see how the blueprint for the palliative care project for this financial year has been made in our PHC :
- Vehicle rent, 3 x 4 x 12 = 144 home care days a year. That is three visits every week for twelve months. Our fourth home care day of every week is sponsored free of cost by a Catholic church. Vehicles are rented at a daily rate of 1100 per day, which sums up to 144 X 1100 = 158400
- Honorarium for palliative nurse at the rate of 10000 per month for 12 months = 120000 INR
- Refreshment charges for volunteers on 4 x 4 x 12 home care days at the rate of 200 INR per day, which sums up to 144 x 200 = 38400
- This financial year, we have earmarked 80000 INR for the purchase of instruments and some medicines which are not available through government supply.
- Volunteer’s training = 5000 INR
- Printing case files, treatment notes, registers, and other stationaries = 5000 INR
- Phone charges for the palliative nurse at the rate of 500 per month = 6000 INR
- That comes to a total of 412800 INR for this financial year.
We collect donations from various educational institutions and shops to maintain a palliative care fund. This fund is used to meet the expenses of those patients who need financial aids. There were more than five patients who had no one in their family to look after them. Such patients were transferred to the nearest old-age homes. Food, clothing and other needs of such patients were met from the palliative care fund. Every year, we celebrate Onam festival by distributing grocery and clothing kits to those patients whose by-standers have no jobs or belong to the “below poverty line” category.
Interesting Reading: Story of a Project for the differently abled persons
If you’ve read this article on the duties of a Medical Officer, you’re on the right track of Being the Doctor in a government hospital. The Medical Officer acts as the team leader and supervises the work of the palliative care health workers. The Medical Officer offers guidance to the team at the peripheries as well as at the PHC. As the implementing officer of the palliative care project of the local bodies, he draws and disburses the funds sanctioned for the project every financial year.
There is an administrative committee called the Palliative Management Committee which monitors the work and fund expenditure allotted to the palliative care programme. The committee conducts meetings once in every three months. Special activities to give a boost to the palliative care programme are planned at such meetings. For example, conducting rallies and volunteer’s training on January 15 which is being celebrated as Palliative Day are planned by this committee. We have also conducted a get-together for the palliative patients last year. The funds for conducting such special programmes are met from the Palliative Fund mentioned above.
The work done by the palliative care team is reviewed every month in separate meetings. The ASHA, palliative volunteers and all the ward members take part in this review meeting. New patients are registered and the work of each month is assessed in detail during such review meetings.
There will not be a single person in Kerala who is unaware of the services provided by the palliative care programme. This has been made possible by NHM and the Government of Kerala which has made the palliative care programme a compulsory project to be implemented in every panchayat, municipality and corporation level. I am not sure about any other states in India where the palliative care programme is being conducted with such enthusiasm.
If you know someone in your family or acquaintances who has been diagnose with a serious illness, talk to your doctor about providing palliative care for them.
So, how did you like this post? How actively is the palliative care team working in your locality? Share your thoughts in the comments section below.