The Hindu Business Line : Filming end-stage cancer

As part of film school exercise, students are required to shoot a documentary or a non-fiction film. I chose to do a film on the Dean Foundation, an organisation which provides palliative care for people with terminal or chronic illness. The beneficiaries are mostly poor people, though some belong to the rich and middle classes too.

Why did I choose Dean Foundation? As a filmmaker-in-training I felt an NGO for the dying was an unusual subject… perhaps an insensitive motivation, but nevertheless a motivation.

Cameraperson Tanveer Mir and I set out on a “recce” to familiarise with the subject, to ensure shooting takes place smoothly.

First we met the organisation’s founder, Deepa Muthaiya, who showed us photographs of terminally-ill patients including one of a young woman with breast cancer. I felt ill at the sight of the breast covered with wounds and puss, and Tanveer was on the verge of fainting.

We learnt that the woman had married early and become pregnant soon after. She was diagnosed with cancer during the pregnancy and decided to give birth despite the risk to her life.

Her reason: her husband had left her and she had only the baby to live for. She received palliative care from Dean Foundation. The day before she died, she had hugged and kissed Deepa, and said “Goodbye.” She had stoically accepted the fact that she was dying.

Deepa spoke to us about Elisabeth Kubler Ross, the author of On Death and Dying, and the Five Stages of Grief propounded by her:

Denial — It is not happening to me? It can’t be.

Anger — Why me? What wrong have I done?

Bargaining — Let me get my daughter married. Let me settle my children. Give me a little more time, dear God

Depression — I can’t do anything about it. What’s the use?

Acceptance — I know I am going to die. Let me die with less pain.

What made Deepa, a former journalist, start an NGO for the dying?

Caring for an ailing relative in hospital, Deepa had chanced upon Sogyal Rinpoche’s The Tibetan Book of Living and Dying, which, she says, set her on a road less travelled.

Reading the book, I found that it presents Buddhist teachings on karma, the soul, life after death and other spiritual matters in a practical and down-to-earth style, while at the same time bringing out their richness and profundity.

It makes one realise that dying is not an end and to die well is very important. The book talks of various acts of kindness and compassion to help people with terminal illness to die well.

Palliative (derived from the Latin pallium, meaning cloak or coat) care basically attempts to reduce the suffering of the terminally-ill. Improving the end-of-life quality is the main objective.

Home-care experiences

Dean Foundation offers palliative care both at an outpatient clinic and, if and when needed, at the patient’s doorstep — be it a hut, a pavement dwelling or even an abandoned pipe that serves as a shelter. A team from the foundation comprising a doctor, nurse, social worker and a volunteer calls on the patients at home. Tanveer and I accompanied them on some visits.

The first patient we met was a 60-year-old woman suffering from ovarian cancer. Entering the house, we found her being looked after by her daughter, while the husband stood by. Dr K.A. Nambudripad and the nurse Maneka checked her blood pressure and pulse. She appeared weak and could not talk much.

Her family said she couldn’t eat and vomited everything. The medical team tried to put her on drips and found a vein with some difficulty. (Deepa says palliative care physicians were divided on the need to artificially hydrate patients when death was imminent anyway. But many patients and relatives demanded drips.) The husband put up a brave front and tried to be cheerful, assuring his wife that she would soon be alright and could eat mutton biryani. The woman’s reply was a big smile. The truth however was bitter, she was going to die. She died the next day.

Another visit took us to a 70-year-old man living in a one-room tenement. His throat cancer had spread and the blood vessel in his neck had ruptured. Dr Grace and the nurse tried to stop the bleeding and dress the area. The patient’s wife was panicking, while the man himself was in intense pain. The room was so cramped that the patient could barely stretch himself fully. He was put on a drip bottle, which was suspended from a clothesline. When asked for an extra pillow to provide the patient with greater comfort, the wife hesitated as she was worried the bleeding would spoil the only extra pillow they had left. She was ultimately persuaded to use it, on the promise that she would be given another.

Emerging out of the room, ahead of the doctors, I found a group of neighbours waiting. They mentioned how the man suffered through the nights and, as all the tenements were huddled together, his moaning kept them awake too. They often sat around to comfort him, they said, and enquired if he would get better.

Later, Deepa explained why it was not advisable for anyone other than the doctor to discuss the patient’s terminal condition. First, in cases where the patient remains unaware of his condition, he may find out from the talk around him and become affected; and second, if the patient is living in rented premises, there may be pressure on the family to vacate from house-owners anxious to avoid the “stigma” of death being attached to the house.

In this particular case, much against the doctor’s advice, the patient was carried all the way up to his daughter’s fifth-floor house. His condition worsened and he died the same day.

During the shoot

We were filming at the house of a man with rectum cancer. As he and his wife were both blind, the foundation had trained the eldest of their two sons to take care of the day-to-day nursing, including dressing the highly septic wounds.

The patient used to work as a telephone operator at a nationalised bank before the disease struck.

The eldest son was forced to drop out of college to care for his father. He now studies for a computer degree through an open university and is trying for a job.

Palliative care in India

Leading hospitals in India have no provision for palliative care and terminally-ill patients usually die a very painful death, points out Deepa.

In a country like ours, palliative care is not accorded much importance by doctors, relatives of patients or society in general, with a seeming unwillingness to invest scarce resources on a “hopeless, dying” case. There is also no scope for good pay or career growth in this stream of medical care. There is a wider preference for work in areas that cure diseases rather than easing the way for those with no hope.

With few institutions focusing on palliative care, there is a general lack of awareness on the subject even among the medical community.

Coping with bereavement

One important aspect of the work done by Dean Foundation is its effort to help alleviate the trauma experienced by those close to terminally-ill patients. During the shoot, we accompanied the team to the home of an eight-year-old boy who had died of Vasculitis as the primary cause, with lung infection compounding the condition. The team members spent some time talking with the child’s mother, sister and grandfather in an attempt to share in their grief and offer words of consolation.

In cases where the deceased happened to be the family’s sole breadwinner, the foundation attempts to ensure continued education for the children or secure jobs for the next of kin.

As Deepa puts it, palliative care is a human right and terminally-ill and dying patients deserve better. Dean Foundation is among a handful of NGOs in India offering palliative care. Their going is tough owing to a paucity of funds, as a lot of people prefer to donate to other causes that have a “future”.

This mindset needs to change, as dying and terminally-ill patients have a right to dignity, pain relief and psychosocial support.

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