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Submitted by PatientsEngage on 20 July 2017

The Romila Palliative Care Centre was started by Dr Armida Fernandez, after she lost her daughter to cancer. While the best medical care was provided to her, she felt the softer aspects of patient care were missing. Here, she talks about her desire to fill this vacuum.

When and how did you start Romila Palliative Care?

Romila Palliative Care started in February 2017. I lost my daughter to cancer in 2013 and at that time we felt that although the best of medical care was available, the softer aspects of patient care for pain relief and counselling services were inadequate and hence we decided we would in a small way try and make a start to help patients who need the services. The Centre is run by the NGO SNEHA, of which I am a Founder Trustee. A group of very dear friends got together with SNEHA and put all ideas into action. The Sisters of Holy Family Hospital were kind enough to provide space.

What are the services provided at your Centre? What are the best ways of providing palliative care to patients?

The services offered are outpatient services and home care for patient with life limiting diseases. These include pain relief, comfort care and counselling services for patients and their families. We have trained doctors, nurses and counsellors. We also offer services of a nutritionist, physiotherapist and occupational therapist.

The best way to offer services is to be there for the patient from the diagnosis. A patient should be helped to live to the fullest, it should be pain free and as comfortable as possible. The patient’s physical, mental, social, spiritual needs must be addressed. The family also needs support and counselling and sometimes respite from patient care which should be addressed.

Who can be admitted into Romila Palliative Care?

There are no admission facilities. Just outpatient and home care.

Could you tell us something about people who have availed of the services here?

Over 70 patients have availed of the services. Most of them are patients of cancer, all adults. They have come at various stages of the disease, mostly later in the course of the disease. A large number still had hope of improvement. A few were resigned to their fate and had acceptance. These patients were usually those who had tremendous faith. About 10 patients choose to die at home. They had a peaceful end. Five to six patients who could not be cared for at home were sent to the hospice where they passed away peacefully. All the patients were regularly visited, comforted and counselled.

The work at a palliative care can be mentally, physically and emotionally demanding job. Who are the key members of the Romila Palliative Care team? What is the total strength and what is the key component of their training?

There are two trained doctors in palliative care, two nurses and two counsellors. Six additional doctors volunteer their services and 20 volunteers from the community. All the staff have been trained in palliative care at Tata Hospital and Pallium India. The volunteers have also been trained at Tata Hospital.

Patients living with a terminal illness, and those who care for them, are confronted with a profound and difficult situation. How do you boost the morale and provide psychological support to terminally-ill patients?

We have trained counsellors and the doctors also help. Caregivers are called in for special sessions once a month and a variety of sessions are specially planned for them. These meetings are all about personal sharing and providing support to one another. Other exercises which have been included include yoga and meditation. Exercises on positivity and improving self-worth have been included like the ‘mirror exercise’ where each caregiver was given a mirror to look in to and told to give one's self positive messages like " I love you" , " How good I am feeling, looking, etc. and they were asked to regularly do these exercises in front of their mirror every morning. This was to ensure that they wake up with a positive frame of mind.

There are a wide range of medical issues and ethical dilemmas that arise in the provision of palliative care, especially in cases of terminal stage of disease. How are those handled?

We don't treat the disease, only the symptoms so that makes it easier. Pain relief can be challenging and pain relievers, both non opioids and opioids, have to given in as per laid down guidelines. Counselling of patients and families can help in ethical dilemmas. The patient and family are the final decision makers.

What is the difference between palliative care and hospice care?

Palliative care is care of the patient from the diagnosis that helps the patient make the most of life. Hospice care is for the terminally ill. The patients are admitted and looked after till they pass away(die).

The palliative healthcare model of Kerala is the best in the country. Do you think others states need to emulate it?

Absolutely! Kerala has the led the way and we all must follow.

 

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