The dilemma of cancer caregivers

By Dr Zeba Hisam

DIAGNOSIS of cancer in any patient is not only stressful to the patient but also the family who looks after the cancer patient. Here in our country the patient and the attendants receive no counselling. When the oncologist suggests the line of treatment — surgery, chemotherapy or radiotherapy depending on the type and stage of the cancer — the  patient and his family have no inkling of the outcome. They are not told about the suffering the patient will undergo or his/her survival rate.

The treatment of cancer to be successful depends upon long stretches of chemotherapy or radiotherapy when the cancer cells are destroyed. With targeted destruction of cancer cell, the normal cells are also destroyed. In this period the patient needs  supportive therapy by infusion of white or red blood cells.  In the process the patient becomes immunocompromised and vulnerable to infections. S/he has to be protected by appropriate antibiotics cover.

I have elderly female patient post chemotherapy, with  a critically low platelet count. The carers are running from pillar to post to arrange for the transfusion which leaves them physically and mentally exhausted !

The terminally ill cancer patients only need palliative therapy. That involves therapy to treat their symptoms only to alleviate any discomfort or pain without attempting to cure the cancer as it is advanced and beyond cure.

Such patients are advised to be kept at home but it is not easy for the family to see the patient going through enormous pain, breathlessness or any other symptoms. The care givers  take them back to the hospital emergency where most of the hospitals deny admission and advise them to take the patient back home as the cancer is incurable. Such patients should be admitted for palliative care only.  We have no palliative care units or geriatric care units or hospices (hardly any) where terminal cancer patients can be made comfortable and their attendants be properly guided.

Although Islam teaches us to be humble and sympathetic to patients and care givers but most of the hospital staff is rude and ruthless including the doctors and paramedics.

A 72-years old mother suffering from carcinoma vulva status post surgery was prescribed 10 cycles of chemotherapy and 34 sessions of radiotherapy. Her two daughters and a son told me with tearful eyes about the agony their mother suffered due to the  the attitude of the doctors.  They said, “We know what our mother is going through and her life is short but the attitude of doctors is like the most ruthless dagger into our hearts and we do not understand why they just can’t talk to us politely and console us at a time when an emergency arised. They just think that since the patient has to die, why waste time on them and their attendants?” Her two daughters were unmarried and she was disturbed. Her son was so caring towards his  mother. He was ready to do anything to make her  free of pain. He said to me, “Doctor sahiba! Just ask me to bring any injection, blood, mega unit platelets, I will do that but at least listen to our miseries.” He complained, “The oncologist does not talk to me properly on the day of the follow up appointment and when after chemotherapy the patient’s platelets fall, he advises us to take her to the physician as he cannot do anything at this stage! It means the oncologist is only interested in another cycle of chemotherapy when platelets are at least 100,000 per ml of blood. Do we not need one single sentence of sympathy? So what should we do in the meantime with our mother? Who will supervise the supportive therapy?”

An elderly male patient of 65 years was suffering from lung cancer, and he was having recurrent episodes of severe breathlessness due to accumulation of excessive fluid in the lungs. He was brought in the ER where doctors looked at his lung biopsy report in the files and declared, “Nothing can be done. Please  take this patient home.” One of his brothers told me tearfully, “Yes we know his cancer is terminal but how can we see him struggling to breathe, we have to bring him to the hospital to provide him relief.  That was the third time within months that his lungs had collected fluid. On previous occasions, a tube through the thorax had drained the fluid.”

Later that patient was admitted in my hospital where a procedure was performed to prevent any fluid collection. This was a palliative procedure (pleurodesis) and such patients should be treated thus to lessen their pain and breathlessness till the their last breath.”

Once I was called for a home visit to see an elderly women who had a gastrostomy tube inserted in her abdomen, to allow  food intake as she had fungating cancer esophagus not allowing any food to pass through the food pipe. Her two elderly daughters were very caring and were meticulously looking after their bed-ridden mother. I found no bed sore on their mother’s body as they were regularly changing her posture. But they complained,  “Whenever an acute problem arises and we land in the emergency room, we are treated very ruthlessly by the hospital staff. As our mother has been a regular patient there everyone knows that she has incurable cancer. So nobody gives her any attention and this saddens us so. It is so difficult to take our mother to the hospital.We have to call the ambulance and yet we are not given any guidelines on how to take care of her at home. We take her for regular check up to the physician but he does not even touch my mother for examination. He just revises the prescription again and again. We don’t know for how long specific drugs have to be given and it surprises us that the doctor never looks at the previous prescriptions carefully. How can he assess the interaction between drugs?”

All attendants complain mainly of unethical behavior of doctors and paramedical staff. Patients are sent home when they can be managed by their families. But when an emergency arises  the carers do not know what to do and how to look after their loved ones. Most of the unmarried daughters, who take care of their mothers or fathers, are themselves suffering fromhopelessness and helplessness. They are terribly depressed and frustrated. They cannot go out leaving mother or father alone unattended. One such daughter told me that even to take cancer patient to the hospital is a huge challenge. It is not easy to fix the appointment with the physician or oncologist or go to the emergency room every now and then. One such caregiver told me that the immediate impact of stress is on those family members who are living with cancer parents at home. She added, “Other siblings who are living away, cannot understand what we are going through! The worst part is, if the cancer patient’s daughters or sons are specialists  and living and working abroad they cannot understand our condition just by making phone calls to ask their parent’s condition. Nobody asks about the condition of those caregivers who are their own brothers and sisters!”

The writer is a  Consultant Physician at Zubaida Medical Center and Head of Department Physiology, Fatima Jinnah Dental College