Passion & compassion

With the cancer rate rising in India, why we need to resort to palliative care

Palliative care not only provides comfort for the patients in their last days but also helps families lead a better quality of life while dealing with terminal illness.

 |  Passion & compassion  |  6-minute read |   15-07-2019
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Every eight minutes, a woman dies of cancer in India. India Against Cancer — the portal that provides information on the leading cancers in India — has declared a few shocking statistics. The estimated number of people living with the disease in India stands at around 2.25 million. Every year over 11,57,294 lakh new cancer patients are registered.

Imagine learning that an immediate family member is on stage-4 cancer and has only a few months left to live. It happens very often. And the kind of shockwaves it sends across in the families is ghastly, and that is when the whole family needs to resort to help to deal with the situation. Emotions ranging from gloom, depression and anger need management.

Often in our day-to-day existence and subjective realities, we forget how death is inevitable. We know that we aren’t immortal, yet the news of an accelerated death due to a terminal illness hits us the hardest.

 main_palliat8ive-car_071019035851.jpgPalliative care is most effective for the terminally ill, as it allows her/him to die with dignity. (Photo: Reuters)

There’s a lesser-known science that deals with this kind of trauma for terminally ill patients and their families.  

I recently met and spoke to Dr Ridhi Gupta, a medical oncologist and haematologist trained at Stanford University. Dr Gupta explained how it is a must for the entire family to resort to palliative care in the situations when a family member is diagnosed with a terminal illness. Dealing with a rude shock needs wholesome care for the mind, body and soul for the entire family. It is slowly catching pace in India, and the results are fairly good.

While palliative care is still relatively new in India, it is most effective for the patient, to allow her/him to die with dignity. For the family, coping with the impending loss takes a front seat, and one can overcome the trauma better with the right medical intervention.

Palliative care includes medications and counselling and has proven to be an effective way to tackle the patient’s physical, emotional, psycho-social complaints. A large part of palliative care and hospice deals with preparing the patient and families for the end, and to allow them to die with the dignity and on their own terms. Dr Gupta stressed on how addressing these concerns helps patients and their families cope better. It also addresses the fright of knowing what has hit the patient, early on in the diagnosis. Patients and families should know what to expect.

Having said that, it can never be easy. 

main_palliative-care_071019040001.jpgPalliative care improves the patient’s well-being. (Representational photo: Reuters)

India is lagging far behind as compared to the US and other higher-income countries when it comes to this branch of medicine. The possible reasons for this are lack of awareness among the patients, caretakers and even among doctors.  Many clinicians still have little or no knowledge of the principles and practices of palliative care.

However, it is picking up.

There exists a general misconception that palliative care is the same as comfort care. Most people discount it thinking it is as good as not doing anything for the patients with a terminal illness including cancer.

Dr Gupta dismisses it as a myth.

She explained how discussions with patients during their diagnosis and prognosis are an important part of palliative care. Psychology of everyone involved is assessed. The terminally ill patients need it easy in their last few days. Their families need help with emotional support, sometimes coping with dementia, pain management and spiritual help. They also deal with cultural predispositions all the time. And not enough gets done in the right direction. However, there can be a change by trying palliative care and ensuring that dignity is maintained for the person who is about to die.

In a research on the utilization of advanced care planning in bone marrow transplant patients, it was revealed that only 44% patients had discussed that with their doctor before or during a bone marrow transplant regarding life-prolonging treatments. And this low number is strongly associated with many unnecessary ICU admissions and deaths.

This is not unique to the patients at Stanford but is common throughout the world.

Dr Gupta further told me about an incident when she was treating her patients with blood cancer undergoing a bone marrow transplant. Bone marrow transplant is a cure for patients with specific blood cancers, and talking about palliative care is usually not well received by patients and their families. However,  based on research — that has been included in her research paper as well — Dr Gupta pointed how early involvement of palliative care was associated with improved mood, sense of hope, decreased levels of anxiety during transplant which was sustained over time even after transplant.

This improves the patient’s well-being. If palliative care services were involved late, especially during the terminal phase of illness, it was associated with higher symptom burden — be it emotional, physical or psycho-social on patients and their families.

main_children-with-c_071019035749.jpgPalliative care prepares families for the loss. It is especially important if the terminally ill is a child. (Representational photo: Reuters)

I was curious to know more on the moral aspect of palliative care and I asked Dr Gupta. She said that the use of opioid medications in India is a big impediment. There is always a moral and legal battle surrounding it. When practised in a controlled environment, within the legal framework, experts say it is effective.  

One of the core principals of palliative care is addressing the signs of despair early and helping families lead a better quality of life, even as they deal with the terminal illness of the loved one.

If cancer is diagnosed early, the patient gets treated with a combination of chemotherapy/radiation or surgery. In advanced stages, the focus of treatment needed to shift from cure to palliative, and often to comfort. Hence, no matter at what stage the terminally ill patient is in, they need to be treated with palliative care in addition to whatever else is the other planned course. After all, cancer treatment and palliative care are not mutually exclusive but are deeply integrated. The physician comfort in the practice of palliative care is also very important. In the traditional sense, this practice came into being from allowing patients to die of cancer. However now, it is extended to patients with other non-cancerous terminal illnesses like end-stage heart failure, lung failure, HIV-AIDS and such.

I have lost my classmates to cancer when we were in our late 20’s, which is not too long ago. We still feel the shock of the loss and coping with it. So, I can only imagine what the parents losing a child must be going through.

My earnest request to all reading this article is to maintain the required dignity in life for your loved one.

Resort to palliative care at the first instance of learning about the terminal diagnosis.

Also read: Palliative care cannot be ignored in context of passive euthanasia verdict

Writer

Chaiti Narula Chaiti Narula @chaiti

The author is deputy editor with India Today TV.

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