Sairam, Dear Reader!

In the January 1, 2023 edition of Vidyullekha, we presented the genesis and the philosophy of Sri Sathya Sai Palliative Care Centre (SSSPCC). In this edition of the journal, we look into how this initiative has reached deep into society, what treatment Seva they provide and, importantly, the dedicated team behind this wonderful initiative.

Today, it is entering into its third year of dedicated Seva to those in need. It is worth mentioning that a vast majority of beneficiaries are cancer patients. However, to serve them better a dedicated basic facility was considered. By the Swami’s grace, a piece of land, close to three-fourths of an acre (near the current West gate of the Ashram) was donated by a devotee. This is gifted to Swaasthyam Palliative Care and Cancer Foundation (SPCCF) for the proposed new facility. SPCCF is a foundation set up at Puttaparthi by Alumni of SSSIHL to take forward the work at SSSPCC. In April this year, Bhoomi Pooja was conducted (construction is expected to start soon). The new centre christened ‘Sai Sharan’ would be completed and become operational in Swami’s centenary year (2025). It would have facilities to perform cancer surgeries, chemotherapy and dialysis.

Treatments Provided:

The centre provides a very comprehensive palliative care program which is not limited to just cancer. Care is provided irrespective of the outcome of the disease. Pain management is a very big area in palliative care, followed by other symptomatic management therapies. In chronic and long-term conditions, patients go through a lot of suffering, with chronic pain being a major concern. Cancer pain is especially very difficult to treat. This calls for treating and administering drugs that require specialised training by the administrators. Patients go through a lot of symptoms for long durations which could be, but not limited to, nausea, vomiting, constipation, edema, difficulty in eating/feeding, difficulty in breathing, collection of fluid in the abdomen, bed sores and wounds. Wounds and bed sores do not heal fast and need to be treated for a long period of time. Palliative care is provided to patients at various stages of cancer. There is a monthly cancer screening program at the centre, where more than 100 people are screened for cancer every month, which includes breast, cervix or any other type of cancer. Every month, anyone with suspicion of cancer may visit the facility to take necessary advice and guidance on where they may avail treatment. They also get palliative care support. Some patients may have complications after their chemotherapy or surgery. These patients may not be able to handle these complications at home. Often they do not even get admission to hospitals unless  they  are  willing  to  get  admitted  in  the  ICU  and  pay  a  huge  amount  of  money.

Also, some of those treatments may not be covered in typical insurance schemes available for poor people. Hence, they come to the centre, get admitted for symptom management and return to the curative treatment once their symptoms are stabilised. Increasingly, many people in the early stages of cancer visit the centre. They are first registered for palliative care so that throughout their entire treatment journey, they have access to palliative care both at home and at the centre. They are also educated on what would be the typical journey in terms of treatment and what are their options for treatment in order to help them make their choice. Hence, this also serves as a facility with medical professionals who can give the right information to patients and guide them.

Another sizable number of patients suffer from post-stroke conditions such as neurological deficits, which are usually lifelong. Here, palliative care helps to mitigate a lot of challenges that a patient encounters. Physiotherapy is another important element in palliative care. While physiotherapy may not help patients to regain their original function, it can prevent the stiffening of joints, retain mobility and increase the range of motion of limbs. The treatment provided is a combination of rehabilitation, prevention and to some extent curative.

Outreach up to the Doorstep:

The centre currently treats patients in and around Puttaparthi within a radius of 50km, who are diagnosed with chronic, progressive or terminal illnesses. This caters to about 560 patients as of today. Dharmavaram, Muddigubba, Kadiri, Gorantla and Penukonda, along with 160 plus villages, are covered. The majority of patients (close to 70%) are cancer patients, 20% are stroke patients and the rest include various other conditions including children born with congenital syndromes who need lifelong palliative care. It is noteworthy that all services provided in this centre have been free of cost since its inception.

Often it is a challenge for patients to visit the centre physically. So the services of SSSPCC reach the doorstep of these patients. Homecare vans are equipped with medications, dressings and materials needed for procedures such as insertion of feeding tubes, catheterization, stoma care, acidic tapping, giving an enema, nebulization and mobility aids along with medications related to palliative care. The frequency of home visits is determined by the condition of the patient. Besides this the centre has a 24/7 helpline to get guidance on the subsequent steps — which could be a change in the treatment or to plan for an early visit by the homecare team or an admission to the centre if the need be. Therefore a continuum of care is provided to hand-hold these patients to navigate through these difficult symptoms all through their lives. When the symptoms become difficult to manage by the caregivers at home, patients are admitted to the centre. The average stay of a patient in the centre is about a week, while there are patients who stay for even up to two months. There are also patients who come for daycare (i.e. they come in the morning, and go back in the evening). Unlike other hospitals, the atmosphere in the centre is very homely. Festivals are also celebrated regularly. Besides, there are a lot of activities to look after the emotional and spiritual well-being of the patients. There are Bhajan programs, artwork and several other activities to engage the patients and their family members. Apart from going through physical pain, there is a huge amount of emotional challenge that the patients go through. Hence, counselling is an integral part of the treatment here.

The Hands that Serve:

The overall management is looked after entirely by a volunteer team of alumni. Apart from trained doctors and nurses, there are some long-term volunteers and a few alumni who are based in Puttaparthi who offer their services in the centre. Due to the chronic nature of conditions, counselling and training are provided to the patients and their family members by this team. Along with counselling and training, they are also empowered to handle basic activities by themselves.

In addition to the team in Puttaparthi, there is also a remote team which is very active. There are devotees in Puttaparthi who come to participate in Seva activities. There is a 17-member team of full-time employees, taking care of the day-to-day service delivery. This includes two medical officers who are trained in palliative care, seven nurses who cover both in-patient care and home care. There is also a team of housekeeping staff, drivers and pharmacists. There are a couple of very dedicated and senior physiotherapists who are retired residents of SSSIHMS, volunteering their time here. In this way there is a significant amount of professionals who are specialised in palliative care, available in the centre. The oncology team will be constituted once the cancer facility is established. For the monthly cancer screening programme, there are visiting oncologists who attend to the patients. Since palliative care is a very holistic approach, all the stakeholders become critical in giving this care.

There is a detailed route map for the home visits and there is a full-fledged application (Health4All application) that helps to plan the home visits. All the patient-visit records get entered and stored digitally. The patient data is constantly tracked by the team to plan the homecare program. It also becomes easier to track the progress of the patients based on the severity of their conditions. There is very systematic planning on the route to take on a particular day. Usually, one van goes on a planned route and the second one is kept as a backup for emergencies. Apart from visits to the centre and homecare, there is tele-support for patients calling the centre for immediate support. The team also proactively follows up with patients to inquire about their status, as typically a lot of patients may not escalate the issue in a timely manner.

Team Vidyullekha wishes all success for SSSPCC and prays to Bhagawan to shower His choicest blessings on all the staff and volunteers who offer their services in the centre. For more information about the centre and service opportunities there, please contact:
1. Brother Gunaranjan (+91-9000183123),
2. Brother Venkata Desikan (+91-9632422311) and
3. Sister Sathya Sai Shree Laxmi (+91-8310766193).