Vandana Mahajan is a palliative care counsellor with a post graduate diploma in integrative counselling. She is trained in palliative and bereavement counselling. She is associated with a Mumbai-based cancer non-governmental organization named Cope with cancer-Madat Trust. She works as a volunteer counsellor at the Tata Memorial Hospital , Mumbai and also provides cancer counselling to patients and caregivers across India and abroad via online platforms.
Vandana is a cancer survivor and a cancer coach who has been conducting motivational talks at various forums, and provides support to breast cancer patients through interactive sessions at TMH. She is a strong advocate for women empowerment and conducts women safety training sessions in corporate houses.
I understood from our call that palliative care is more than just pain management and deals with emotional distress. Can you give a little insight into how it works?
“We can’t change the outcome, but we can definitely affect the journey” said Dame Cicely Saunders who is the founder of the hospice movement. When a person is diagnosed with a terminal illness or is dealing with a chronic illness, in addition to the physical manifestation of the disease there is lot of emotional distress that comes as a package deal. This is both for the patient and the caregivers. Whilst the physical symptoms are treated, unfortunately the emotional burden is overlooked.
While the clinician takes care of the physical pain and the physical symptoms, it is a counsellor/ psychologist who can address the emotional burden. Therefore, palliative care is not only pain management, it also includes emotional management, which can be provided by a palliative care counsellor. The emotional drain and the emotional strain also need to be addressed.
Let’s talk about Mrs Shilpa (imaginary patient) who’s has just been diagnosed with advanced cancer with a poor prognosis. In addition to the to the treatment that she goes through, (which is very painful and has a lot of side effects) she also starts carrying an emotional burden. This can be in the form of fear, anxiety, depression, panic, feeling lost and sometimes even wanting to end one’s own life. This can break her down mentally. At this point it is very important that counselling is integrated into the treatment plan. Just because a person is dying or is living with a chronic illness doesn’t mean we give up on that person. Everyone who has a life limiting condition deserves to be treated with love, empathy and compassion. Living with illnesses is very tough. If we can handhold the person diagnosed with an illness and walk with them, they feel wanted, they feel recognised and they feel that they’ve not been abandoned. I have seen many patients whose disease is well managed but emotionally they are a wreck. The same is applicable to the caregivers. Care giving is a huge responsibility which can take an emotional toll on the caregivers.
If I am the primary caregiver for a family member going through a chronic illness like cancer, what should I do outside ensuring appropriate clinical care?
I’ve been working with cancer patients for over 8 years now, and I firmly believe that cancer is not a disease of just the patient alone. Cancer is a disease that affects the entire family. Caring for a person diagnosed with cancer can be demanding both emotionally and physically.
A caregiver is so rightly referred to as a silent patient. You don’t have to suffer – if you are unable to cope up, seek help. Do not feel guilty about seeking support from friends, religious or spiritual advisors, counsellors, and health care professionals.
While the patient’s physical symptoms are being attended to by the clinician, there are certain things that a caregiver can provide as per the needs of the person with cancer. These can be any of the following or all of the following:
- Emotional support – while the treatment takes care of the physical symptoms resulting from the treatment and the disease, the emotional distress the patient goes through may not be visible. As a primary caregiver, you can keep an eye out for any behavioural changes and then raise it with the treating team.
- Help with financial and insurance issues
- Help with medical care
- Bridge the gap between the patient and the health care team by being the communicator.
- Try to ensure, if possible, that the person with cancer has an active role in decision-making and the discussion that takes place.
- Caregiving is challenging and when the person with cancer is struggling with the disease and its side effects, it can be frustrating for the caregiver. At this point, it’s important to recognise that your loved one is dealing with a lot – physically and emotionally!
- Recognize your own strengths and weaknesses as a caregiver. This allows you to set boundaries and know when to ask for help so that you do not feel burned out. Remember as a caregiver, you can care for your loved one only if you are emotionally and physically capable in doing so. Taking care of yourself is important.
- Be aware of the disease, its treatment, and the prognosis. It can help not only you but also your loved one who’s been diagnosed with cancer deal with the disease and its outcomes much better.
You mentioned palliative care is a multi-team approach. Can you tell us who the key stakeholders are in such care management?
To understand palliative care, it is very important to understand the concept of ‘Total Pain’. Total pain means approaching pain from all aspects of life. This includes physical, psychological, social, and spiritual aspects. Palliative care aims to improve quality of life of the patients and their family who are facing life-threatening illnesses by providing holistic healing or support to them, irrespective of the intent of the treatment.
This can be done by the treating clinician or the physician who provides relief from physical symptoms, a counsellor / psychologist who provides emotional support, a priest or a chaplain who provides for them spiritually and social workers who can help in various ways. All of them together form the palliative care team which should ideally be integrated into the treatment plan at the time of initial diagnosis!
General awareness of palliative care is low in India. Is this changing? How big is the gap when it comes to awareness and access to care professionals?
Palliative care continues to be the most misunderstood arm of healthcare. I will talk from the perspective of someone who works with cancer patients. As of today, I would say majority of cancer hospitals do not have a palliative care team working with cancer patients. Palliative care still continues to be a care which is associated with the dying cancer patients essentially focusing on only pain relief and symptom relief towards end of life. The moment we talk of palliative support for the family, the first thing that the family understands is that the patient is going to die. Unfortunately, there are many doctors also who are not aware of the real meaning of palliative care.
There is a change happening. There are many renowned palliative care professionals working towards bringing about this much needed change in our health care system.
“Less than 1% of India’s 1.2 billion population has access to palliative care. The efforts of pioneers over the last quarter of a century have resulted in progress, some of which hold lessons for the rest of the developing world.”
Dr M R Rajagopal, Founder-Chairman, Pallium India
We still have miles to go before we are able to finally reach that place where palliative care is well understood and attainable to everyone who goes through a life limiting condition or a chronic illness. I have patients who live in remote areas of India where there is no access to palliative care teams. There are some with whom I stay connected till death but there are many who die in want of Palliative support.
Palliative care is largely regarded as something older people may need but you mentioned the rise in the number of younger people (or their families) that seek palliative care. What are the more common cases you see?
This is a very interesting question you’ve asked. Rightly said that palliative care is still associated with geriatric patients.
Older adults are often dealing with a variety of aches, pains, and discomforts in addition to serious health conditions like cancer, respiratory diseases, Alzheimer’s, osteoporosis, diabetes, influenza and Pneumonia and cardiac conditions. The medical treatments to cure or reverse these health conditions can affect older bodies more harshly and are more likely to cause significant side effects. In such cases, the efforts are directed towards improving their quality of life. Hence the need for palliative care for them.
I work with cancer patients and cancer is not an age-specific disease. A lot of the patients that I work with are young. Sadly, cancer doesn’t care about the age! The treatment is harsh and leaves the person affected, with many unpleasant side effects. While it’s the patient who is diagnosed with cancer, the families are also affected in various ways!
That’s why I talk of palliative care for younger people (and caregivers). Younger people go through far more complex emotional upheavals. While an 80-year-old adult knows that death is inevitable, for a young 30-year-old who is being denied a chance at life because the cancer is incurable, Palliative care becomes very important. They need a lot of hand holding. They need answers to their questions. There are some married young people who know they’re dying and they’re leaving behind young spouses and young kids, elderly parents so it becomes a very big emotional challenge to deal with these patients and their families.
Every person diagnosed with a terminal illness, irrespective of the age, deserves empathy, compassion and love, therefore palliative care is not only for older people. It should be accessible to very human being may- a toddler or a younger adolescent or 30-year-old or someone who is 80 years old. Here I would also like to mention that palliative care is also for people living with mental health problems, the LGBTQI community and for those who are affected by a humanitarian crisis (like in Ukraine).
Conversations around death. This is a very sensitive topic for most families and most would say that there is no way to prepare for death. However, in your line of work, you are in situations where you deal with terminal conditions quite often. How does palliative care help in such situations?
Those who are born, will die. This is the eternal truth of our existence! While every birth is celebrated, no one talks of death. It seems everyone wants to live for ever. Is that even possible? The problem is that we do not acknowledge death as an inevitability. No one talks about it.
While talking about death and dying might be uncomfortable or upsetting, research has shown that having these conversations within families and communities and with the health care providers can help people prepare emotionally for their own deaths and that of others’, and helps prepare for medical care they would prefer receiving at the end of their lives.
End-of-life care refers to health care for a person nearing the end of their life or in the advanced stage of a terminal illness. Generally speaking, people who are dying need care in four areas—physical comfort, mental and emotional needs, spiritual issues, and practical tasks. This is where the multi disciplinary palliative care team steps in.
Palliative care uses a team approach to support patients and their caregivers. This includes addressing practical needs and providing bereavement counselling. It offers a support system to help patients live as actively as possible until death and their caregivers post the death of their loved ones.
You can connect with Vandana on LinkedIn or follow her on Twitter to get some insights and practical tips.
Book Recommendation: Walk with the Weary by Dr M R Rajagopal, father of palliative care in India, from Flipkart or Amazon.
You may also want to check out this Silver Angels essay on palliative care, an attempt to lay out palliative care in the Indian context.
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