Dr Rajagopal at RGCI
Workshop on Palliative Care
by Pooja Dogra
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
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.
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.
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.
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.
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.
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)?
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 staffeven the son and daughter-in-lawignored
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
should a palliative care doctor do when there
is conflict between the patients wish and
that of the family
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 fathers 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 familys wishes
because dead people dont sue; living
|Dr Rajagopal with
GPH nurse Sicily Kutty during her palliative
care training in Kerala
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
to do when a family insists on an oxygen mask?
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. Lets 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 patients lungs, as they are, are severely
incapacitated and unable to use much oxygen anyway.
How do you
reassure a terminal patient who is breathless?
doctor told us that a fit of breathlessness is
the hardest thing to treat and that its
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 cant tell the patient,
Dont worry, you will be alright,
because the patient is literally fighting for
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
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.
to do in a breathlessness situation are:
Correct what symptoms can be corrected/eased
Oxygen if it helps
to do when a dying patient is bleeding
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
a patient is delirious
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 patients tongue is always
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.
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
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 natures way of protecting the child.
If a childs haemoglobin is low, he wont
run around and get hurt; hell feel lethargic
and sleepy. This way, if sleeping, he wont
feel so much pain or discomfort.
If children are active, encourage them to go to
school. Dont 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.