Life is too short, and we should live it each day. Most of us are blessed with the uncertainty of death, but not all of us. Some are doomed with fear of the end in this eternal world. Some know they are going to end, next day, next week or next month.
“Life is not lost by dying; life is lost minute by minute, day by dragging day, in all the thousand small uncaring ways.” – Stephen Vincent Benét
A terminal illness is a condition which cannot be cured and is likely to lead to a person’s death. Such people are cared, by a facility named as palliative care. Here is a conversation with Mrs. Padma Sesha Sarada Lingaraju, a counsellor and Hospice Administrator at Sparsh Hospice Care, a palliative care centre for such terminally ill patients. She is a member of International Association of Hospice and Palliative Care (IAHPC) and a life member of Indian Association of Palliative Care (IAPC).
Can you explain what is Sparsh Hospice and what does it do?
Sparsh Hospice is a palliative care centre which offers end-of-life care to terminally ill patients mostly cancer. Started in September 2011, it is an initiative of Rotary Club of Banjara Hills charitable trust. When a person is diagnosed with a terminal illness like Cancer, Alzheimer’s or Parkinson’s and after they have exhausted all the curative options, we offer them comfort care or support care. Such patients have to live with the thought of death day in and day out.
People start questioning the meaning of life, as many cancer patients have never smoked or drank, and they wonder, if they did anything wrong. They have anxiety, physical and emotional pain, social and spiritual issues, so we ensure them dignity at their end days and quality of life. This includes physical state as well as emotional and social issues.
What is your role as a counsellor in the organisation?
As I am a psychologist by profession, initially I joined as a counsellor in 2017. Now, as the Hospice Administrator I not only look after counselling but also overall administration of the centre. My primary responsibility is to see that patients understand the concept of palliative care. Even after the patients are discharged from hospitals for lack of treatment options, they hope for a cure, but as they are terminally ill, reorientation of their thoughts is done. We keep their hopes up but for care and not cure. Families feel hopeless when they initially visit our centre. We have to educate them about quality of life at the end days. We have to sensitise them towards the idea of dignified and pain free death. That is my role there. As a counsellor, I look upon the mental health of patients and provide care to them.
How do you deal with stress of work and re-motivate yourself?
All of us know that both life and death are very natural processes. It’s just the attachments and emotions which lead to pain. Death is accepted and denied at the same time in our society. As we are working closely with patients who are actively dying, society perceives our job to be very stressful. But this work is a very gratifying work and makes a difference to these patients and families at a crossroads of their lives. Empathy is so matter of factly used nowadays that many have lost the actual sacredness of it. When we understand it from their perspective, we get satisfaction from helping them. This itself is distressing. This constant thought of death will make us question our mortality and keep us grounded and give a sense of humility. Once you understand this, things are easy.
If you can put a smile to a crying face, there is nothing more satisfying. We need to constantly remind ourselves that it is not about us, but about the patients and their families. Their care is of utmost priority. So, probably we don’t even think how it will affect us. For ourselves, sometimes we just take a day off to read and relax and reenergize. We develop some hobbies, some people read, some write, some watch movies. Personally, I write stories about my patients. It also helps me connect with them and to understand them, not as patients but as humans.
Can you share some stories about the patients who have a rather positive outlook even in their end days?
My work makes me wonder sometimes how patients in their end days can stay so composed? It makes me wonder if I will be as composed and dignified about death. I have seen families on the verge of losing their loved one to terminal illness, caring for others travelling the same path. These people still have hearts for others. Even the patients have a grave bond among themselves. Many times, patients look out for each other in terms of solace, friendships and few times supporting the final rites of other patients. They exchange not only their pain but even food and gifts with each other. It really makes me wonder, how all of this is possible, especially when they themselves are going through a tough phase.
Do you think there is a lack of awareness of palliative care? Can you tell us the reason?
Yes, there is a lack of awareness for different two reasons. Primarily, ignorance among the general public about this. People confuse palliative care with end of life care. We need to sensitise and educate people about palliative care. I participate in various community programs for the same. Secondly, the doctors who are practicing mainline medicine look down on it as a soft skill. Palliative care is a line of medicine, a science, there is a method and there are medicines in it. Palliative care is still considered the job of non profit sector of the society as it is not a revenue generating field. In addition to this hospice care is not covered under any type of medical insurance. very few medical professionals refer patients to palliative/ hospice care. We get only 1-2% of the patients suffering from terminal illness for palliative care.
How do you think people can contribute to this initiative?
Initially, people need to be sensitive and be aware of what is happening around them, in their community, in their society. They should think on the lines of their contribution to resolving these social issues. Communities play a major role in spreading awareness about palliative care services. there are people who have seen their loved ones suffer, and this motivates them to help others. Another thing is that Palliative care should be promoted and introduced in formal education, both in primary and higher level. Doctors should study it in their curriculum and make an extra effort to work towards quality of life of patients in their end days.
What is your advice to the younger generation?
In many countries, children are encouraged to involve themselves in community affairs and it is part of their curriculum . They take pride in it. It should be done here as well. It does not matter which cause, but it should be done. It not only helps them professionally but also teaches life skills like empathy. We here focus too much on core subjects but tend to avoid these. There are so many organisations working for numerous causes. Youth should be sensitized towards it.
The new generation is very smart and need little nudge in the form of a reward. They should be encouraged to interact with others and be aware of their surroundings. Elders should encourage them to give something back to society.
A quote from the movie ‘The Fault in our Stars’ read ‘“There are infinite numbers between 0 and 1. And of course, there is a bigger infinite set of numbers between 0 and 2, or between 0 and a million. Some infinities are bigger than other infinities. There are days, many of them, when I resent the size of my unbounded set…. I cannot tell you how grateful I am for our little infinity. You gave me forever within the numbered days, and I’m grateful.” That’s what life is, limited infinity. And it does not matter if one infinity is bigger or the other. You just have to live it. Selfless care to others is the biggest gift you can give to the society. We have numerous living examples of people who nurture the world with love. But we need more such people.
Remember, “Never believe that a few caring people can’t change the world. For, indeed, that’s all who ever have.” – Margaret Mead
So, let us all pledge to return the society only a shred of what it has given to us.