Caregivers Link visits Cipla Palliative Care and Training Centre

When I arrived at the Cipla campus, I didn’t know what to expect. Despite working at Caregivers Link on care issues, I am as ill -equipped to deal with many difficult facets of illnesses as most people. My journey was undertaken on behalf of Caregivers Link, to understand this palliative care issue a little better.

Patients and families who arrive at the Cipla Palliative Care and Training Centre (CPCTC) at Warje, Pune, do so pushed by traumatic and painful health circumstances and conditions. The centre is a free resource for persons with a chronic and terminal illness, living with physical and emotional pain, grief, fear and the personal, physical stress caused by wounds, sores, dressings, discomfort with breathing, eating, or due to constipation and other bodily discomfort.

I enter the campus and take a deep breath. My surroundings are a fresh, cool, clean, green, with a sense of trees, older, wiser and calmer than me, leafy, tall, bird filled, and somehow connected to the sky. I enter the building to meet a smiling person at the desk. The area I have entered has air and light flooding the space. This is reflective of all of the areas at this centre that I later walked through, the wards, admin areas, canteen, dormitories for family caregivers, recreation halls. It is also reflective of the people I met and passed during my walk through. Nurses, physio-therapist, volunteers, attendants, admin staff. There is a compassionate, ready, energy here. The teams know what they are dealing with and importantly, they are trained, equipped and willing to do what they do.

I walk in to the meeting room and as I introduce Caregivers Link, there is an immediate and responsive understanding of care concerns. At CPCTC, as much work is done with the patient’s family as with the patient. There are some hard truths about chronic and terminal illnesses and their impact on relationships and families. Fear, anxiety and a deep sense of burden weighs down the caregiver, even as the pain and discomfort of illness and fierce treatment weighs down the patient. There is a tendency for people to look at CPCTC as a care home that relieves the family of the responsibilities of care. This attitude and feeling is immediately addressed by one very simple rule; no patient may be left at CPCTC without a family member attending alongside, learning palliative care from the CPCTC teams – that may then be practiced at home when the patient returns home. Yes many patients return home. Depending on the degree, stage and type of illness, some patients do also pass away here, since end-of-life programmes are a part of palliative care services.

There are some misconceptions and much ignorance about palliative care. Most common of these confuses palliative care with the end stage of an illness or end-of-life care. Palliative care has a role to play quite often and through a disease process and its progression. It is not the same as end-of-life care though it plays a crucial role at that stage as well.

Palliative care enters the life of an individual and their family, when a disease requires an intensive degree of pain and symptom management. This would be the circumstances when dealing with cancer, Parkinson’s, kidney failure, multiple sclerosis, Alzheimer’s and other debilitating illnesses.

The approach to palliative is different from curative. The focus in palliative care is helping a person deal with the physical, emotional, psychosocial and spiritual stress, distress, often indignity and stigma, caused by serious illness and also by the treatments being undergone.
Read Hospice Vs. Palliative Care for clarity on the distinction between the two. As it clarifies here, “Palliative care can be received by patients at any time, at any stage of illness whether it be terminal or not.”

To know more about a palliative care programme for hospice or end-of-life care, read this piece that was posted by Aparna Mittal at PatientsEngage on the Caregivers Link Facebook group,  an interview with  Dr. R Akhileswaran, Medical Director, HCA Hospice Care, Singapore, that focuses primarily on this aspect of palliative care. Things happen in their own good time. I’ve had it in mind to visit the Cipla centre at Warje in Pune, but it stayed on the to-do list until I read this piece and it jogged CPCTC to the front.

Medical and paramedical teams delivering palliative care require to combine an empathetic, compassionate connection to a patient’s feelings and circumstances, along with the trained skills and expertise essential to therapeutic and medical care.

Palliative care extends to family, friends and loved ones. They too are impacted by the illness of the person they are looking after in deep ways, physiological, emotional and spiritual. It is common to find caregivers develop conditions such as stress, depression, panic disorder, heart disease, blood pressure and other such. Palliative care can extend itself to helping reduce the risk of developing these conditions and improve coping capacity and resilience.

I am curious about the connection between palliative care and mental illness and psychosocial disability. I have a sense that many of the principles of palliative care overlap with the psychosocial approach to what has traditionally been viewed as falling within a strictly medico-psychiatric framework. There are issues of connection, to spirit, emotion and our close relationships, common to both. This is an area well worth exploring. For readers who have experiences, thoughts and views on this, please write in and share what you think.

As I complete this piece, here is a description of the role of palliative care during cancer treatment that I read on the website of Mayo Clinic:-

“The benefits of palliative care for people with cancer include:
The ability to fully complete treatment
Improved quality of life during treatment
Increased ability to perform daily activities
Living longer
Improved ability to deal with the emotions
Increased connection to social support
Fewer hospitalizations”

Sharing some of the other resource sites I visited while writing this piece:-

What is palliative care?

Overview

Palliative care in India

Indian Association of Palliative Care

Palliative Care in India: Current Progress and Future Needs

Cancer

Palliative Care in Cancer

Palliative care is an essential part of cancer control

Dementia

Late-stage dementia care

Forget Me Not: Palliative care for people with dementia

Multiple sclerosis

Palliative care

Parkinson’s disease

Palliative care in Parkinson’s disease

Palliative care in Parkinson’s disease

Shikha Aleya

4 comments

  1. Ujwala Prabhu says:

    Thank you for an informative article and for the links to local resources on palliative care.

    1. admin says:

      Ujwala, this is a very basic write-up, it shares the introduction I had to a subject not well known. Its a huge subject to explore.

  2. Radhika Chandiramani says:

    Thank you, Shikha, for writing about this issue and this centre. I visited their website after reading your article which impressed me, and their approach is really wonderful – esp that of dealing with a person as a Whole Person, doing things like laughter therapy and gardening, and including spiritual nourishment. See what they say: they encourage people to give and forgive, and to end quarrels and reconcile (http://www.carebeyondcure.org/about-cipla-palliative-care-centre/how-we-care/). What if we could do that while we are in good health and not wait till we reach the end of life 😉 ?

    1. admin says:

      Yes. Back to the connections between mind, body, spirit and our relationships.

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