What is Palliative Care?
Palliative Care is the total and active care of patients suffering from prolonged or life-limiting illnesses, lending psychosocial and spiritual care and support for the patient and the family to improve their quality of life.
Generally people—sometimes even medical professionals mistakenly think palliative care is important only during the terminal stage. Actually the care starts from the time of diagnosis and ideally it should be a team effort involving patients, their families, doctors, nurses and volunteers geared for "curing sometimes, relieving often and to comfort always."
What drew you into Palliative Care?
My father had severe pain and I took him to the pain clinic at Calicut. There, I saw that about 70 - 80 patients came to the pain and palliative care clinic everyday. Those with advanced cancer with pain and several other symptoms had good relief of pain and supportive treatment. As an anesthetist, I already had interest in the management of chronic pain. Hence, I felt the need to learn and provide pain relief and palliative care back in Chennai. However humane, cordial and kind doctors are, they don't have the time and the facility to help terminally ill patients cope with pain and other distressing symptoms such as vomiting and diarrhea which are often collateral to the medical treatment. Our clinic is hospital-based and we work along with other specialists.
What is the scope of work you undertake in Palliative Care?
At the basic level we believe in "being" there with the patient, at every point of the illness. In the good old days before the invention of antibiotics and surgical procedures small courtesies such as pulling up a blanket, opening a window to let in fresh air, reading or listening to a patient, asking what he/she needed to be comfortable, massaging painful areas were extended naturally to sick people. Care and communication are sidelined in the hurried frenzy of modern life.
When a patient and the family comes to us weighed down by the challenge of coping with a serious illness, pain and other distressing symptoms, we as palliative care specialists make them comfortable in the environment they prefer—home or hospital. We study the person's medical history and listen actively as they open up and talk about their physical, emotional, psychological, social, spiritual and financial problems. Unless every issue is addressed our goal of improving the overall quality of the patient's life will not be realized.
I am ably assisted by Dr. Subathra Muthukumaran, chief nurses Ms Sona and Ms Tamilselvi and a host of other health care workers in our daily activities. Besides, there are many medical professionals and health experts who regularly lend support to the Center's mission of providing relief and comfort to patients and their families. We also undertake home calls. Currently we are attending to about 25 new patients and review about 80 patients every month.
We discuss treatment plans and options or work hand-in-hand with the doctors who are already treating the patients. We even arrange for chemotherapy or radiotherapy for some patients who cannot afford the same. An increasing number of doctors are referring their patients to us for palliative care and we give the patients hope that something can be done to alleviate their symptoms and mitigate their suffering.
Symptoms such as vomiting, insomnia, constipation and breathlessness can be corrected by appropriate medication or procedures. As for cancer pain which can be a harrowing experience, it can be treated with inexpensive medication by following the WHO guidelines.
Are drugs such as morphine available for your patients when required?
In 1986 WHO declared oral morphine as the drug of choice for cancer pain and it should never be denied to patients who need it. Contrary to popular belief, oral morphine is not addictive and is prescribed worldwide for millions of patients. In fact, a country's development in palliative care is measured by the increased use of oral morphine in cancer pain treatment.
However, morphine is classified under narcotics and there are certain restrictions in its procurement. A few years ago when the Indian government came down heavily on the licensing of narcotics, availability of oral morphine was seriously hit and we were left with cancer patients suffering in pain and agony. In the 1990s, the WHO and the International Narcotics Board collaborated with the government of India, which led to the amendment of rules regarding the procurement and supply of morphine for medical purposes.
Currently morphine supply is monitored by the Drug Controller of India and 16 state governments led by Kerala and Tamil Nadu have simplified rules for using oral morphine. Doctors certified by the Indian Association of Palliative Care (IAPC) can get the licence to procure and dispense oral morphine for treating patients' with severe pain.
Tell us some moving moments while taking care of your patients?
An elderly patient at an advanced stage of cancer who was at our clinic was too ill to move and became restless when his son's marriage was arranged. He expressed his desire to somehow be there at the marriage hall and the son wanted his father to be there too. So we arranged for his transport in an ambulance with a doctor accompanying him and a nurse alongside holding the IV lines; it was a strange scene. The struggle to transport him to the wedding hall and back seemed nothing in comparison to the joy in his eyes when he witnessed his son's marriage. Twenty-four hours later he peacefully breathed his last.
Can you share with our readers some difficult cases you've handled?
It always centers around pain management and the "difficult pain" is most challenging while dealing with patients. When the mechanism of pain gets complicated it becomes a struggle for the patient and the carers. Sometimes when a patient becomes too ill to swallow medicine, we resort to invasive procedures.
One other issue that is still challenging in palliative care, is the spiritual distress. Some patients can never get resolved within as to why the ailment has visited them. "I've always been a teetotaler, I have never smoked; I have led a clean and honest life….why should I get this disease?" However much we try to pacify them, some patients are unable to accept the situation and continue to suffer because they feel they have been let down by a power above them.
A very successful businessman who was diagnosed with a life-limiting illness when he was only 54, calmly passed on his business to the family, sorted out his finances and sought our services. Though he coped well with his illness, we noticed that there was one question for which we had no answer that continued to trouble him till the very end….. "Why Me?"
How do you financially sustain your activities?
Initially we pooled in our own resources and friends and philanthropists supported the cause. Now families of patients that have benefited from our services donate for other patients and we help people through our charitable trust. Many doctors offer honorary services at our centre. Come to think of it, we have managed for quite a while without going for a fundraiser.
How do you think this field of Palliative Medicine can be taken forward in India?
Somewhere down the line, as the medical field advanced, and the concept of family physician changed, professionals started concentrating more and more on the disease and less on the "person" with the disease. This is not so much to blame the medical specialists—just that the patient flow doesn't allow the time to know the patient as a "person" as it was done by the family doctor of yester years.
Soft skills such as communication are important especially in the medical field. Some patients feel that being told, "You only have a few more months to live," reads like death sentence. Communication is like a prescription that is given to suit the individual at the receiving end.
The Indian Association of Palliative Care (IAPC) offers a training course for doctors and nurses at heavily subsidized rates. It is an 8-week distance-learning course that requires the candidate to spare only 3 days for contact classes and exam and comes with an optional 10-day clinical training. A doctor who successfully completes this course is eligible to apply for licence to stock and dispense oral morphine.
Lakshmi Pain and Palliative Care has been actively interacting with the Government of Tamil Nadu to set up satellite centers for pain relief and palliative care. We recently signed an MoU with Tamil Nadu Government's General Hospital (GH) at Chennai whereby palliative care experts from our Center will work along with, and train doctors and nurses from the GH in the nuances of Palliative Care, until they can self-sustain this activity. We will also tap the Telemedicine facility available in GH to further initiate medical professionals in suburban and rural areas into different areas of Palliative care.
IAPC is lobbying hard to include Palliative Care in the basic and post-graduate medical and nursing curriculum in India. Hopefully, this will better equip medical professionals to understand and address a patient's total suffering.
Personally, I would be satisfied only when there are enough palliative care clinics caring for sick people - say within a radius of 50 kilometers each, in cities, suburban and rural areas all over the country. It may sound like a distant dream but I will continue to project the need for Palliative Care facilities in India until that happens……
How can Medindia help your cause besides carrying this interview and informing people about the importance of Palliative Care?
You can use your health portal as a platform to raise awareness on the need to care for the patient alongside curing the disease. Cancer patients are not the only ones in need of Pain and Palliative Care. There are paraplegics, people with Muscular dystrophy, Alzheimer's and mental illnesses…..the list of sufferers with progressive incurable diseases goes on. Patients and their families need to be encouraged with the knowledge that there is no need to suffer and Palliative Medicine as a specialty is picking up in developing countries as well.
It is mandatory to educate as many doctors and nurses and other healthcare workers in this specialty to cater to the growing number of suffering patients worldwide.
"And in the end, it's not the years in your life that count. It's the life in your years." - Abraham Lincoln
Medindia wishes Dr. Mallika Tiruvadanan and her team of Pain and Palliative care workers all success in their mission to improve the quality of life and overall wellbeing of patients and families reeling under the onslaught of progressive, incurable diseases. Medindia will help her promote this concept and has started a support group for palliative care on its community site. Please share your experience and help other patients benefit from your experience as a caregiver or as a patient.