A 2-day, 16-hour training programme was organized for a group of volunteers at the Beach office of Sri Aurobindo Society on the 16 and 17 July, 2021.  The participants were given a workbook and were explained the ways to use the workbook.   Members of Sanjeevan team actively participated and facilitated the 2-day programme.

Purpose: A caregiver or volunteer in palliative care is a person caring for an individual (patient) who has some physical, emotional, psychosocial or spiritual problems due to advanced disease or old age. The care givers’ intervention helps to improve the patient’s wellbeing. The intervention can be through contributing time, energy and/or money.

Introduction:

A small introduction about Sanjeevan palliative care was given to participants and asked to introduce them to know each other. The intention of this training was explained to make effective volunteers to look after the palliative care patients with compassion.

It is undeniable fact that only a small percentage of people die suddenly. We all have to die one day. Only a small percentage of people die suddenly and unexpectedly.  Most people have multiple problems before they die. Palliative care is a way to help people to reduce sufferings.

Nursing Issue: It was started with an important message that the patient’s comfort and well-being depends on the carer’s involvement in the patient’s respective area.

Points Discussed:

• Oral Hygiene: If the patient is bedridden, he/she would be brushed and their mouth rinsed every 12 hours to maintain oral hygiene. Apply oil to moisture the skin and cracked lips
• Skin Care: Maintaining daily hygiene, maintaining the environment and assessing and taking care of the patients’ skin integrity
• Patients with urinary catheter, wound care, cleaning and dressing
• Grief and Bereavement: Participants were explained how to handle grief,
• The caregivers’ best way to support is to motivate the grieving person to talk more about death and enquiring about his or her feelings.
• Never compare their losses with yours
• Simple pamphlets explaining grief, counselling services available, and self-care will go a long way in providing support.

Physical Problems: A brainstorming session was conducted among participants to know about the physical problems and symptoms of palliative care patients.

Points Discussed:

• Basic care to the palliative care patients need to be ensured by the caregivers
• The resource person taught caregivers about the non-pharmacological treatment
• Caregivers were also taught about a few home remedies and exercises to manage and reduce patients’ pain
• Educating the caregivers on patients’ personal health and hygiene

Communication Skills: Participants performed roles plays in two situations to understand about the effective communication in order to have fruitful relationship with the patients.

Role Play: Some frequent problems faced by the caregivers and the patients’ family members were discussed and remedies were given through role play methods.

Aggressive Situation:  The caregiver and patient’s family members are aggressive towards palliative care patient and tend to behave very badly. The patient always goes through hard times with immense amount of frustration and depression.

Patient always needs comfort and support. Participants were made to understand what would be the care giver’s role to make patients live in peace.

Kind Situation: All caregivers and volunteers are kind to the patient and listen very attentively to every bit of patient’s feelings and words.

Spiritual Issues: At the end of life, many people go through a lot of spiritual issues for their unresolved problems or unfinished businesses. For instance, broken relationships in the past, financial problems, loss of control on life and loss of dignity, etc.

Participants were given a few advices to address the patients’ spiritual issues,

• Be aware of one’s own beliefs and biases
• Be a compassionate person in the patient life
• Encourage the patient to explore meaningful moments in his/her life

Community Participation & Local Resources: Participants were split into two groups to discuss about the local resources to help and support palliative care patients.

• Ambulance only for palliative care patients
• ASHA workers support (dressing and medical support)
• Employment opportunities (entrepreneurship basis)
• Free education
• Medical benefit card
• Self-business development
• Free education for all
• Pension scheme

At the end of the discussion, following are some suggestions that were given by the participants.

Individual Level: Candle making, tailoring, incense making, phenyl making, rice flour making, designing, pillow making, broom stick making, saree selling, pickle making, packing work in the super market (through referral)

Through Organization Level:

• Self Help Group (SHG)
• Schemes for cattle rearing, terrace gardening, mushroom cultivation
• DICCI scheme – Dalit Indian Chamber of Commerce and Industry
• Linking with local markets – Small scale business people like farm producers, handicrafts candle making, pickle and snacks making would be linked with the local markets.
• Housing board schemes – house construction for marginalized and terminally or incurable illness patients
• Insurance schemes – Health insurance schemes are available in the bank for both natural and accidental death. Palliative Care patients can be linked with the banking schemes
• CM relief fund – from Rs. 5000/- to Rs. 15,000/- are available for palliative care patients in the form of reimbursement.

Future Plan and Followup:

• Participants (volunteers) responded that they would identify the palliative care patients and start an initial interaction with them
• They also sought Sanjeevan team’s support then and there to provide proper care to palliative care patients
• They responded that this is a great learning to be compassionate towards others. Showing compassion is not only for patients, but to everyone. This is an improvement on their personal level.
• Participants would soon form self-help group to add more volunteers in order to serve more palliative care patients

Sanjeevan team thanked the volunteers, who participated actively for two days (16 hours). They were also motivated to implement their learning in their respective communities and encourage them to be a compassionate towards palliative care patients.

“This is not the end, but it is end of the beginning”