What is Palliative care?
Mayo clinic defines it as specialized medical care that focuses on providing patients relief from pain and other symptoms of a serious illness, no matter the diagnosis or stage of disease. Palliative care teams aim to improve the quality of life for both patients and their families. This form of care is offered alongside curative or other treatments you may be receiving. Palliative care is provided by a team of doctors, nurses and other specially trained people. They work with the patient, their family and other doctors to provide an extra layer of support that complements the ongoing care.
For this week’s Torchbearer Thursday guest speaker is Pheroza Bilimoria who says, Palliative care is the third arm of medicine after diagnostic and curative care that people need to know about. It is medicine’s best kept secret.
In 2013, Pheroza did not know what Palliative care when she most needed it for her husband, and by 2015 she had started a foundation and a platform to provide palliative care service with Palcare in Mumbai.
Pheroza calls herself a workaholic with over 30 years of experience in the media, marketing and communications space spending very less time with family when a personal tragedy struck. Her husband, Jimmy Billimoria’s persistent cough was diagnosed with stage four lung cancer. A non-smoker with a fit lifestyle and a clean bill of health just 4 months prior, Pheroza was devastated. Nothing had prepared her for this and the diagnosis remained constant across doctors and consultations.
The couple were referred to Dr. Peter Harper, in London. He was confident about helping manage the illness. Jimmy went through the treatments but the aggressive cancer kept him in pain. Helpless and alone, Pheroza felt ill-equipped and in need of help. Taking care of someone in this condition was difficult, you didn’t know when, how and what to do. You wanted to do the right things but ended up making mistakes. It was like the blind leading the blind.
This helplessness reminded her of the time when she was living in London and had just had her child when a NHS social worker came in to check in and help out with the baby. Pheroza felt she didn’t need the help but the NHS worker insisted and came in to check up thrice a week.
“I wish there was someone like that NHS social worker figure, to help and support in this situation” Pheroza saysTwo years into the diagnosis and treatment, Jimmy succumbed to the illness.
A few months later, when she was in London to receive the Lifetime Service award for her work in advertising, she had friends ask her on why they did not go for palliative care. Pheroza was dumbfounded. What was palliative care she asked? People overseas assume it is the next natural step, while she had no clue what it was about. A gentleman with the Marie Curie Institute said he would support her if she wanted to start something in India
After she returned Pheroza wanted do something more meaningful with her life. She had quit her old job and her husband, Jimmy’s words came back to her – you haven’t done any charity work. perhaps you should start. With this at the back of her mind, when Ratan Tata, a family friend asked how could he help, Pheroza said she wanted to do something in the palliative care space.
The TATA group provided support, they helped her put together robust business plans. They set up the Jimmy Bilimoria foundation and inducted trustees who were eminent business personalities like, Deepak Parekh, Ishaat Hussain, Keki Dadiseth, Russy Mehta, who could provide the necessary guidance. The first year was spent in curating a team of specialists – doctors, nurses and psychologists. Another advisory board was created with palliative care experts from around the world and Palcare created 39 guidelines for patient care.
“Palliative care is not end of life care. It’s so much more than that. It is to make sure that the patient is peaceful, pain free and has the will to carry on and extend for a little longer. It is supporting the treatment path the patient is already on“
This support and connection is what drives Palcare. Pheroza describes it as “High touch, low tech”. The core team at PALCARE has doctors, nurses and psychologists. The psychologists play a big role as the psychosocial elements are difficult to deal with. The physical pain can be dealt with but the spiritual, emotional pain takes toll on the patient and the caregivers.
Dame Cicely Saunders, founder of the modern hospice movement puts it :
You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”
Modern medicine practitioners may see death is a failure, PALCARE and Pheroza disagree. Death is inevitable but it’s important to try and make the most of the remaining days, months or years.
When PALCARE started in 2015, it was one of the few places where you could get Palliative care but now there are more places and services available. There are plans to create a helpline in efforts to create awareness, to share the knowledge and information.
Pheroza wishes they could do more for patients, the current pandemic brought on its own set of challenges where palliative care had to be given through video calls and other tech means.
But there will be some other solution. She and the team at PALCARE are hopeful.
And isn’t that what is it about? Creating hope. Hope that things will get better, hope that you are doing everything in your control and hope that it’s enough.
Palliative care, needs to be widely known and accessible, to serve the patient and caregivers, since the patient’s life matters till the very end.
Watch the video here :
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