Over the years, CPAA has realized that a cure for cancer involves more than simply treating the tumour. The patientís state of mind has been found to be critical towards effecting a full recovery. Through our counseling sessions, we try to resolve conflicts (financial, psychological, social and mental) that patients face so that they are better able to fight the disease.
What is Palliative Counseling?
People talk about Palliative counseling as being very easy. It may be so when you have to break the news to someone you don't know - but when it comes to ones own near and dear ones, it is the most difficult thing in the world to do. We tell a patient that there is no treatment for their Cancer now - only pain control, lack of appetite, digestion problems, constipation, lack of sleep, no sleep- which will be taken care of in the Palliative Department. Even though the patient is aware of the fact that the disease has progressed and spread all over the body, they are always looking for that slight ray of hope, that just perhaps there could be some medicine in Ayurveda, Homeopathy, etc. that may add a few years to their lives. Sometimes ones feels so helpless telling a patient that he should just take each day as a bonus and enjoy it to the fullest - to eat whatever he likes which till now they may have abstained from, go for long walks, go to the sea face and enjoy nature's beauty, go for movies etc.
All of this is easy to say. But can one imagine oneself in that patients place? How it feels when you have to wait and watch death approaching you - a step closer each day? It is as if there is a sword dangling over your head on a strand of hair. The tension and panic of not knowing when and where that hair will snap and death will strike you. This situation really overwhelms a grown up individual. It is different when a small child goes through the same situation, as he has no fear whatsoever. He is happy as long as there is no pain. He plays, demands his favourite toy / book, or even his favourite dish - which often goes untouched, because the demand was made when the child was free from pain, but by the time the dish was prepared, the pain came back with a bang and nothing seemed O.K. It gets to the point where he just wants to be left alone or sometimes just clings to his mother crying bitterly and asking, "Why does this only happen to me? What have I done that God makes me suffer so much?"
Seeing an innocent child rolling and screaming in pain really makes one wonder whether there is a God after all. When a child of understanding age is faced with this situation, it affects him more, as he understands his parents' misery and the expenses they have undergone towards his treatment, all to no avail. He watches as his parents have to dig into their bank accounts, break up all the saving certificates that they had set aside for their old age and finally even sell their ornaments. The family sometimes gets into such dire straits that they have to sell their house and are literally without shelter. The child who is a witness to all this wonders when it will all end. He feels that all he can do is pray to God to take him away quickly or take matters into his own hands and end his life. This is the terrible ordeal that a child of understanding age goes through. Why it is that an innocent child has to suffer so much? Has he been brought into this world to suffer such excruciating pain and misery? It all seems so very cruel. It makes us sometimes wonder why God, who is as we are told all forgiving, kind, sympathetic and goodness in itself, makes even innocent children suffer. So many questions arise to which we have no real answers. People who believe in re-incarnation say that it is the Karma of your previous life, but then WHY does it have to be carried on to your next life? Why is it that your wrongdoings are not punished in the life that they are made in? Is it even remotely possible to expect a person to remember what their Karma was in their previous life?
At first the counselors have a tough time trying to break through the cocoon built around the patient, as he does not allow anyone to take a peep into his personal life. It is after a lot of talking that we are sometimes lucky to break through the barrier and see the softer side of the patient who is worried about how the end will come. How much longer will he have to suffer? Will it be painful or peaceful? What will be the signs of approaching death? Will it be breathlessness or will it be choking? Will he vomit blood as shown in films, a sign of approaching death? What reply does a counselor give to these queries? Situations like these so often make us counselors feel very helpless. Even the patients realize that we can do nothing more than listen to their grievances and pain, though that in itself offers them some relief from the burdens they carry on their shoulders - Someone who they can talk to and cry their hearts out to, who understands what they are going through, even though their ultimate problem, the one of imminent and uncertain death, cannot be solved. They feel it is merely enough that they can speak to someone about their woes and fears which they cannot disclose to their near and dear ones. All we can advise them to do is live each day of their life to its fullest and leave the rest to God.
Another situation that is difficult for a counselor arises when they sometimes become attached to a patient before he / she turns palliative. After all we counselors are only human and sometimes we do get attached to a patient. One fine day that patient comes into your room for counseling. It is very difficult having to break the news regarding palliative treatment to a patient who you have been seeing for months or who you have helped out in many ways. All we can do is tell that patient that it is all over now, no further active treatment is possible and the only treatment he can be given from now on is palliative / symptomatic treatment. Palliative Counseling constantly throws us into emotionally demanding situations that really exhaust us counselors who at times get depressed and need a break to unwind and mentally recuperate. If we don't take a break it is quite possible that we may `burn-out'. To avoid this `burn-out' situation, the group meets once every week over lunch to discuss their difficult cases. Once in a while a picnic is organized from where we come back refreshed and ready to start our sessions anew.
Mrs. Halima Aurangabadkar, C.P.A.A. Mumbai
In 1992, at the request of Dr. Karimbhoy of Bai Jerbai Wadia Hospital for Children, Mumbai, we set up a Counseling Cell in the Hematology Department, Ward No 13.
A large proportion of children in this cell suffer from leukemia, and the long drawn out treatment can be depressing to the point that their parents lose hope and halt it midway. It is at times like this that CPAAís supportive presence can make a critical difference in giving both patient and family (most of whom are from the lower socio-economic group) the will to soldier on.
"Although we have our share of failures, we have been able to help a large number of people, too. I enjoy working with the children and become a child myself when I am with them," says Vinaya Chacko.
Would you like to make a contribution to the Counseling Cell at Wadia Hospital? Click here.
In 1992, Dr. R. S. Rao, then Director of Tata Memorial Hospital and Dr. Praful Desai, eminent cancer surgeon, asked CPAA to help the hospital set up a Preventive Oncology Department. Viji Venkatesh was deputed for the purpose and spent 3 years in the department. Today the Preventive Oncology Department of Tata Memorial Hospital runs a cancer clinic every weekday from 10 am to 12 noon. Anyone desiring a screening can attend.
For the terminally ill, the Tata Memorial Hospital has set up a Palliative Care Cell. In 1997, we were given Room No. 189 in the Golden Jubilee Building, and have permanently stationed Halima Aurangabadkar here. With her warm, sympathetic personality, and a reassuring, grandmotherly presence,she helps the mostly illiterate patients fill in forms, and assists all patients navigate the paperwork when they come for treatment. She talks to doctors on behalf of patients when they are hesitant to ask questions themselves. She distributes medicines, biscuits, sweets, clothes, shoes, and bottled water as appropriate. She visits patients in the wards when they are admitted. She guides outstation patients to places where they can get free or cheap meals and accommodation.
In 1998, Dr. K. A. Dinshaw, Director, Tata Memorial Hospital, requested CPAA to set up a Counseling Cell in the OPD in the private wing. Here, the patients have a very different financial profile, but as much need of moral support and reassurance.
Patients are generally referred for counseling by their doctor or the Social Worker, some just wander in while searching for another room and some come looking for us having heard about us from patients who have benefited from our services. Each patient is given the benefit of guidance and information, and maybe even financial help.
Broken dreams, secret fears, deeply buried dreads, anger, frustration, the feelings of helplessness and isolation Ö it helps to be able to share them with someone, and thatís what we do during our counseling sessions. We listen, we empathize, we guide and inform.
We have persuaded a shy Muslim lady to undergo a lumpectomy. We have shared our own difficulties in giving up smoking with teenagers who called us saying they wanted to kick the tobacco habit but couldnít. We have eased families through the first frustrating days of post-laryngectomy surgery, until the patients could make themselves understood. At times, we have received confidences that patients were unable to share with their own family members.
Counseling is not restricted to patients, but is extended to the family as well.