And she died in the evening in a small dark room of a private clinic, suffering from excruciating and unbearable pain. All the family members gathered around her bed, weeping silently as she was screaming in pain, and vomiting repeatedly. They all witnessed helplessly those last few hours of intense suffering as her life gradually ebbed away.
The young attending doctors and the nurses were not insensitive too! But they were not really trained and thus were unskilled and unprepared to face the unique professional challenge of caring for a dying patient. Even a few hours ago the girl was in her house, to be more precise for that afternoon; she was lying on the cold floor of her bathroom, tossing around, yelling at others and begging for some pain relief. Her mother, with all the tears of the world in her eyes was pouring water on her body with the faint hope of giving some relief to her. Who knew more than her that those long apprehended moments which had been haunting the family for last four years finally arrived for her daughter!
Nevertheless, ultimately, the family could not take it any more. They rushed her to a clinic. All they wished now was not her life to be saved, not her cancer to be cured, but to get some relief and comfort for her. That is all they wished only. But, that evening, those medical professionals, like most of their other colleagues were not able to make her pain free, symptom free. They even failed to establish a minimum communication with the family and convince them that medical science has a role to play to make inevitable death a good one, a dignified one.
She had been living with cancer in her for previous four years, medically known as ovarian cancer with widespread metastasis. It was incidentally detected during an operation planned for an apparently innocent cyst of her ovary. Since then, her parents had taken her from renowned cancer specialists to well-named surgeons, clinic to clinic looking desperately to have a 'cure' for their beloved daughter. Almost all options of the conventional modern medical practice were tried on her including a colostomy, numbers of chemotherapy and also sessions of radiotherapy.
The first one was creation of an artificial opening in the left side of her lower tummy for passage of stool. This was done because the tumor lump obstructed her normal food passage and was not removable by operation. This was during the days when she had completed her higher secondary school.
Chemotherapy and radiotherapy were tried, claimed to be aiming at reducing the tumor size. She endured all these painful therapies with the hope of being cured. She did not know that the type of cancer she was bearing was not curable.
She carefully hid her colostomy bag and even got admitted in a diploma course on interior decoration when she felt a little better after the chemotherapy. She had just begun knowing a boy a bit intimately immediately before her operation. One week after her operation, she discreetly asked one young nurse if one could conceive a baby with a colostomy! The nurse did not know what to answer!
One can put forward a very pertinent question! Did the doctors know about the outcome of all what they had been doing! Were they just hoping against hope! If they knew, did they discuss everything with the patient and or with her family honestly with all openness? The answer is probably negative.
During all those four years she had been denied of most of the features of a good clinical care. No honest communication was even tried to be established between the doctors and the patient, not much attention was paid for freeing her from pain, alleviating her physical as well as her psychosocial and spiritual issues.
In a word, nobody really much cared about her as a whole human being. She was just an ovarian cancer patient. Lastly, when everything became too apparent, her belly began getting distended, she started vomiting frequently and when both sides were completely stripped of their resources and strength, the ultimate response of the medical community was revealed.
'There was nothing more they could do'. They had discharged her to home and had left her, abandoned her to the care of the helpless, resource less family members.
In a society where physician's hierarchy prevails, nobody could ask even the basic ethics of medical care, of Hippocrates's oath, of moral issues of abandoning a patient all alone! The disease was incurable and death was inevitable, and she died. But the question remains — were the sufferings also inevitable? Was the intolerable pain, the discomfort and the agony of loneliness, being abandoned in the hand of the family and friends was also inevitable!
Dear reader, the answer is again a confident negative. Some knowledge, some skill attainable with proper training, and above all, an all-together different attitude and holistic approach could very well relieve much of her sufferings and suffering of the family too. .
Concept and attitude towards caring for the dying members of the society is not new and has been prevailing since ancient time and became a part of evolution of the civilisation. But integration of scientific programme concerned with the discriminating use of drugs and medical skills with rational tender loving care was first appreciated by the institution called St. Christopher Hospice in London, UK in 1967. Since then, the concept of 'total care' of the incurable patients in an organised form has been widely recognised and acknowledged globally as Palliative care.
It has been appropriately defined by World Health Organization as the care of patients with active, progressive and far advanced disease where the focus of the care is the quality of life. There now exists a wide knowledge base and it has developed into the mainstream of health care.
The medical component of the palliative care, which has been termed as palliative medicine has emerged as a specialty since 1987. There now exists scientifically valid and simple methods of pain control and management of other distressing issues that costs very little and that is maintainable even at community level.
What is needed is proper national health policy, educate and train the health professionals and make necessary affordable drugs easily available along with a creation of people's demand. To appreciate the need of such service integrated into the health care facilities, it has to be recognised first that despite significant advancement of modern medical science, many illnesses still continue to evade cure.
Moreover, in a country like ours, many of the potentially curable cancers become incurable when they are first seen by a doctor. Even after being diagnosed, how many of these patients can really afford the expensive treatment schedule!
Incurability is true for many causes of cancer, progressive neurological disorders, AIDS and end stage disorders of vital organs. When cure is not possible, as often it is not, the relief of suffering should be the cardinal goal of medicine. So, philosophically, palliative medicine is not only applicable for cancer patients only but also for almost all diseases which ends to death.
One may be surprised at how richly rewarding palliative care can be; how surprisingly terminally ill patients speak of the sense of safety they feel when suffering has been relieved and they know everyone is being honest with them and the loved ones they will leave behind.
Palliative care is a basic human right, not a luxury for a few if the society claims it to be civilised or civilising.
Many renowned medical institutions of the world has independent faculty to deliver this service and training facilities. Many organisations are engaged in creating awareness around palliative care.
In Bangladesh, we are looking forward to that day when no death will appear shameful to the rest of the society. As Phillip Ayer puts it "Death should be discrete and dignified exit of a peaceful person from a helpful society without pain and suffering and ultimately without any fear".
The writer is an Associate Professor and Project Coordinator, Palliative care Service of Bangabandhu Sheikh Mujib Medical University.