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Dr Rajagopal at RGCI Workshop on Palliative Care
by Pooja Dogra

Pooja Dogra represented Ganga Prem Hospice at a palliative care workshop held at the Rajiv Gandhi Cancer Institute in Delhi on December 11th, 2010. Dr Rajagopal from Kerala, who is affectionately known as the father of Indian palliative care, led the workshop.

Pooja reports:

The Rajiv Gandhi Cancer Institute workshop on palliative care was very interesting. Dr Rajagopal, the chief trainer, spoke with great knowledge and authority on the subject. He gave several examples and asked questions, which made the talk very interesting for the listeners and participants.

Dr Rajagopal speaks to the workshop audience

Dr Rajagopal was the principal speaker, giving pre-lunch and post-lunch talks on palliative care to an audience which consisted primarily of doctors, nurses and Cancer Sahyog volunteers.

He put a lot of stress on communication and what to do/what not to do in a palliative care setting when dealing with terminally ill patients.

He spoke about the power that comes when one is a doctor, a nurse or a professional carer, and when a life depends on him/her. He gave the example of the manner in which a policeman or a post office clerk speaks to people just because he is in a position of authority. He has something to give and others are dependent on him. Dr Rajagopal asked us to imagine how much power we wield as a doctor or carer.

He warned against developing any condescension or sympathy towards the patient. He stressed on empathizing with the patient and not sympathizing with him/her. Always speak to the patient sitting down at his level or even kneeling on the floor. Do not speak to a patient by patting him on his back. It gives the impression that you are the “giver” and the patient is somebody who is in need of your help. Always listen keenly. If the patient asks a question to which you have no answer, don't try to answer the question straight-away just because you are a doctor or carer and are supposed to be an authority and have all the answers. Listen.

“Don’t offer advice to a dying patient about what he did wrong in the past.”

Dr Rajagopal allowed the audience to participate and kept them actively engaged by asking them questions related to real-time palliative care situations. He talked about a patient who had end-stage oral cancer in Kerala.

Due to his disease being so advanced, he was feeling enormous guilt about leaving his family unprotected and without financial back-up. He was in so much pain that he said it felt like somebody had driven a red-hot iron through his face and was constantly twisting it inside. In this situation, people came to him to tell him how he should have given up tobacco and spared himself this misery.

Dr Rajagopal analysed the situation for the audience. The patient is suffering disfigurement due to oral cancer and does not want anyone to visit him. He is in physical pain, is isolated socially and is emotionally in grave misery due to his impending death and family-related worries. What is the point in telling him now what he should have done in the past (like giving up tobacco)?

The uncomfortable tube

Dr Rajagopal showed us a small video (unscripted) of a wing commander and his wife (a youngish couple), whose mother had suffered cancer for 4 months before dying. They talked about how they faced the situation, what they thought was lacking in the medical services that were provided, and how things improved when palliative care was introduced.

The son and daughter-in-law told of how their mother had a nose tube inserted, which was uncomfortable for her as the tube twisted her nose upward. The hospital staff—even the son and daughter-in-law—ignored it, but when the palliative care worker came to visit the patient in her home, he asked, “Is the tube uncomfortable for you?” to which the patient answered yes. The palliative care medico then readjusted the tube.

Dr Rajagopal told us that the tube is very uncomfortable for patients.

What should a palliative care doctor do when there is conflict between the patient’s wish and that of the family

Dr Rajagopal cited one case where a patient had made it clear earlier that he did not want to die in an intensive-care unit (ICU). His son however said that his father’s life should be saved at all costs, even if it meant putting him in the ICU with oxygen masks and tubes. Dr Rajagopal said that doctors and hospitals give in to the family’s wishes because dead people don’t sue; living people do.
Dr Rajagopal with GPH nurse Sicily Kutty during her palliative care training in Kerala

He then said that for dying terminally ill patients, everything that can be done to make them die comfortably can be done in a ward and does not always require an ICU.

“What to do when a family insists on an oxygen mask?”

Dr Rajagopal talked about the difficult situation of when a terminal patient is suffering acute breathlessness. If the family insists on the use of an oxygen mask, they can be told by the hospice/doctor/nurse/palliative care worker, “Alright. Let’s try the mask for 10 minutes. If it makes the breathlessness symptom better we will keep it on, but if the patient is still uncomfortable or even more so, we may take it off.”

We were told that generally, it takes 7 minutes for the oxygen mask to start showing its effect if any, so 10 minutes are more than enough. Dr Rajagopal said that an oxygen mask is very uncomfortable and that patients keep taking it off. The oxygen is dry and hot under the mask. Additionally, a dying patient’s lungs, as they are, are severely incapacitated and unable to use much oxygen anyway.

“How do you reassure a terminal patient who is breathless?”

The doctor told us that a fit of breathlessness is the hardest thing to treat and that it’s far worse than a symptom like diarrhea or vomiting. The patient is gasping for breath, fighting to get air into his lungs, and not much can be done to give him relief. We can’t tell the patient, “Don’t worry, you will be alright,” because the patient is literally fighting for his life.

In this situation, the palliative care worker can say, “I know you are breathless. One of us will stay with you till you are better.” Convey to the patient that you are doing your best and look for what can be done to make them more comfortable. Correct the symptoms that can be corrected.

Dr Rajagopla talked about a situation when as a doctor, he was asking a patient suffering from breathlessness about his symptoms. A physiotherapist who was on a visit with him just rubbed the back of the patient and immediately the patient started to feel better.

When breathlessness is caused by a tumour, some relief can be provided by giving the patient corticosteroids to bring the oedema (swelling) down somewhat. In this case, more air can get to the lungs and the patient may feel some relief.

Things to do in a breathlessness situation are:
• Reassurance
• Correct what symptoms can be corrected/eased
• Oxygen if it helps
• Corticosteroids
• Morphine

What to do when a dying patient is bleeding

The sight of blood can be frightening for a patient, his family and especially the children. Prepare early for such an eventuality. Keep green sheets on the bed instead of white. With green sheets, blood stains turn black and do not frighten as much.

When a patient is delirious

Up to two-thirds of terminally ill patients suffer from delirium. Many times the patient is restrained physically or tied up. When patients are restrained, they actually become agitated. Chemical restraint is always better than physical restraint. Putting medicine under a patient’s tongue is always preferable.

Dealing with cancer in children

Dr Kapoor at the palliative care workshop

Dr Gauri Kapoor, paediatric oncologist at RGCI, gave a presentation on how to deal with children suffering from cancer. Dr Kapoor said that 20% of childhood cancers are hopeless cases. Around 30-50% of children with cancer will eventually die of their disease.

Very few families can accept the fact that their child's disease is no longer curable.

One has to keep on telling the parents gently that the cancer cannot be cured. Parents are upset with the prognosis but are happy that the truth is told and that they are not being kept in the dark. Families are unable to handle uncertainty. “Communicate gently and honestly. False hope is unfair,” said Dr Kapoor.

Palliative care for children does not mean that the child is end-stage. It is given from the beginning, as soon as they are diagnosed, and alongside curative treatment.

Dr Kapoor talked about situations where parents insist on some form of treatment for their child, even when it is unsuitable. For example, children with leukemia have low haemoglobin. Parents want a blood transfusion. In some cases, it is advisable not to go for blood transfusion as low haemoglobin is nature’s way of protecting the child. If a child’s haemoglobin is low, he won’t run around and get hurt; he’ll feel lethargic and sleepy. This way, if sleeping, he won’t feel so much pain or discomfort.

If children are active, encourage them to go to school. Don’t ignore other siblings. Sometimes, siblings start to feel as if it is their fault that their brother or sister is unwell.

Parents are uncomfortable with discussing death with children, but children, especially adolescents, can understand. 27% parents regret not discussing death with their terminally ill child.

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