I came across the terminology 'palliative care' while conversing with a young couple sometime in late 2017. Being a non-medical person, I was unfamiliar with the term and other jargons that came up in that discussion. So, I sat with Google, and it was like opening Pandora's box… terms like hospice care, critical care, geriatric care, end of life care, quality and dignity of life —all were lined up with scientific explanations.
The last two terms — 'quality and dignity of life' drew my attention. By the end of the year, the term palliative care had entered into my life with the failing health of my husband. Now, I can see the issue all around me with my relatives and other extended circles, in hospital beds, in the pale face of a child, or in the blank look of a person suffering from critical illness.
Now I know, palliative care 'is a multidisciplinary approach' with specialised medical and nursing care for people with prolonged illness. It focuses on providing people with relief from symptoms, pain, and physical and mental stress. The goal is to improve quality of life for both the patient and their family while they face problems associated with life-threatening illnesses.
It is about prevention and relief of suffering by early identification, impeccable assessment and treatment of pain and other problems, and also about dealing with the physical-psychosocial and spiritual aspects.
Besides cancer, palliative care is also referred to any kind of life-threatening diseases or sufferings associated with long-term critical illness like chronic heart, or renal failure and so on. Put simply, palliative care is easing the pain with the physical, mental, emotional and other supports, when someone's life has come to a crossroads.
Palliative care may be required at any stage of life of the patient suffering from critical illness. The life of an accident victim with serious physical illness along with the mental agony could not be minimised without appropriate palliative care.
Palliative Care (PC) targets on patient's comfort and care, with or without the presence of curative intervention. Hospice Care (HC) is for the people who are terminally ill or declared as dying within six months or so, while PC is for the patients who cannot take care of themselves and patients who no longer receive curative treatment.
HC is provided at a person's own home environment, or in nursing facilities. At a certain point, both HC and PC may merge into a compromised system, like balancing between the two with hospital care and home care. Palliative care is not only services and care by the medical professionals – physicians, nurses, or hospital facilities, but also a concerted effort with the family members, people from the community, and overall the state, for creating an enabling environment.
Today, with the advancement of medical science and health care facilities, life is extended beyond the earlier assumption about 'aging.'
Crossing the 50 plus bar was a big deal, termed as ‘boyshoko,’ or aged! Now life begins in the mid-30s, and the government has promised to raise the maximum age for applying for official positions to 35, from 32 years.
Retirement age has already been extended to 65 years by many organisations. Our active seniors are inspiring us every day — having a quality of life — with active participation as the mantra of celebrating life.
There will be illness and suffering on their path, but if it is supported well by the family members and required facilities, life becomes tolerable, despite the sufferings of the body. Once, tuberculosis was considered fatal; we heard 'cancer has no answer' too. Today, we can see that medical science has made remarkable developments. Now, tuberculosis is handled with vaccines.
In my childhood, I remember one of my aunts lived a confined life in a single unit house – she was abandoned, and returned to her parents due to having TB.
I remember her moments of staring at the sky, or far away through the half-window panel of her bed. All of her belongings were burnt in a ditch when she passed away. For many years, the house remained deserted.
Today, early detection and modern treatments are happening though, but there are stages when life asks us for a halt. Things do not happen as expected. This is the reason why 54 percent of health suffering falls under critical care with non-communicable diseases and reasons when, at times, our patience and ability also collapses despite our inner will to help the sufferers.
We need to remember that in the next 10-12 years, the aging population with health complexities alone will be one in every five in Bangladesh, and today's youth volume will also fall into that.
It can be mentioned here that Bangladesh stands 79th on the Quality of Death Index and 80th on the Quality of Care Index and also the Quality of Health Workforce Index of the Economic Intelligence Unit of the Economist's report on 80 countries.
Therefore, it is time to come together in a 360 degree approach. All stake holders, state and non-state parties need to act in unison. In this regard, I just remembered the remarks of a Dr Bimalangshu Ranjan Dey, from Harvard University, published in The Daily Star.
“Our healthcare system is disease-centred, not patient-centred. We are competent at providing medical services as far as our medical knowledge advances. But there are conditions or diseases where our medical knowledge falls inadequate in helping the seriously or terminally ill patients. It is not just about offering them a pain-free existence, but also the opportunity to help them with the required comfort. The suffering can be both physical and emotional, and palliative care addresses both. We also need to note that end of life care is a part of palliative care, not the whole of it.”
The government has made us proud by achieving most of the Mid Decade Goals (MDGs), especially bringing down infant mortality and maternal mortality from healthcare issues. Now it is time to focus on the Sustainable Developing Goal (SDG to be achieved by 2030) to ensure healthy lives and promote wellbeing for everyone at all ages, with access to quality essential health care, increase and create a trained workforce under WHO guidelines with policy advocacy, capacity building, essential medicines, and coordination and collaboration at all quarters.
As a general citizen, my humble call to the Ministry of Finance and Health is to include palliative care in their sectoral plans and budget lines.
Recently, along with some state supported organisations like Bangabandhu Sheikh Mujib Medical University (BSMMU), Dhaka Medical College and Hospital (DMCH), National Institute of Cancer Research & Hospital (NICRH), and private initiatives like ASHIK, Ayat Education, a social enterprise, have created extensive programmes on the issue of palliative care with a road map of engaging youth and community, and transfer knowledge and skills for the health professionals along with policy dialogues.
This is one of the giant leaps taken to address the gargantuan task with the right slogan —'Dignify Life through Palliative Care.'
Let's bring the term palliative care into our regular vocabulary of health care and services. Here the WILL comes first, alignment of the other issues like availability of human, financial, and other resource will follow.
The writer is a development worker, UNICEF and Save the Children retiree.