Bad prognosis or terminal illnesses are never easy to deal with, even for experienced doctors, but it is during these difficult moments when palliative care specialists can help guide the future of patient care in the best way possible.   

It is only in the life of a doctor that the sad reality of death has to be dealt with grace and bravery.

So, it is no surprise to note that doctors working in palliative care say working in this field can be a life-altering experience. Drawing the real meaning of life from their varied experiences, most doctors say they have learned that money, education, and power are but superficial things.

Dr. Aditya Jain, a doctor based in Mumbai, shares another insight. “It is upsetting when we see young people die of cancer. That makes me realise I need to stop cribbing about petty issues in life. There is so much to learn from them! We complain about our lives when we should actually be valuing it.” He adds: “I learned how to be thankful to God and have really understood that money is no good if you cannot value your life.”

Putting up a brave face

Ever wondered where these doctors draw their strength from?

Dr. Bharesh Dedhia (Intensivist, ICU-in-charge at Hinduja Healthcare Surgical) says, “One of the most insightful things to learn from these terminally ill patients is the courage they display in the face of an inevitable crisis. Often, they are the ones consoling their near and dear relatives. This is a testament to great human spirit and unfathomable courage, which is present in all of us, but we are often afraid to recognize and express it.”

Dr. Pradeep Mahajan, Regenerative Medicine Researcher from Mumbai, says some terminally ill patients try to live life to the fullest and some have their own grudges. He says the saddest situation is when some patients are betrayed by their own family because of their condition. “It's only the ones who are on their death bed that inadvertently teach doctors a thing or two about life and illness.”

"At least a cancer patient comes to know that he’s got less time. In cases like Alzheimer’s and Parkinson's, they have lost their memory and connectivity. It is pathetic for both the patient and the relatives.”

On asking him how emotional the bond between a doctor and a terminal patient is, he adds, “I still remember an Alzheimer’s patient, whose son was profusely crying out to his father to call him 'son' and recognise him. That was a very touching moment. I’m a son too. I was on the point of crying too, but as a doctor, I have to suppress my emotions and put up a brave face.”

They don't need advice

The biggest pillar of support for a terminally ill patient is their family, right from helping them improve their immunity and quality of life to boosting their morale.

Dr. Nikaben Shah from Pune says working with such patients has helped her realise the value of family. "When we all know that we cannot change the scenario, at least as a family we need to encourage the patient to live to the fullest as long as he does and accept his dying with dignity.”

Dr. Vijay Reddy, Intensivist from Bengaluru also believes that family is a great support system. “Even us doctors get so attached to families of terminally ill patients in hospice during the treatment that we do cry. Probably that is why most doctors are fully aware that no one is permanent here. It is scary but the only truth.”

Although, most clinicians are trained in palliative care, the actual specialists in the field are summoned to handle complicated and challenging cases. Most hospitals, should have a specialized team of palliative care experts to handle these unique and challenging situations.

Another common misconception is that palliative care should only be sought during ‘end of life’ situations. This is untrue. In fact, many palliative care experts would agree that any patient with a serious illness (could be terminal) could approach a palliative care specialist when they are struggling with their illness. The sooner the situation and its challenges (physical and emotional) are addressed, the better it can be for the patient and the family.

Palliative care and hospice care should therefore be treated differently, although both specialties share common principles and techniques of dealing with patients.

Doctors should make it clear to seriously ill patients and families about the importance of contacting a palliative care specialist, regardless of their prognosis. It is not easy to deal with an advanced disease prognosis or the subject of death and mortality on the whole. In such cases, the patient and the family can be made comfortable and accepting of the situation only by an expert who defines it in the terms they best understand, and in the situation they best relate too.

The article is contributed by a Sonali Desai, a Mumbai-based freelance writer and member of 101Reporters, a pan-India network of grassroots reporters.