Care for the dying: Healthcare system fixated on cure, not quality of life

Death is inescapable, and so is life before that. But modern medical science is fixated on the idea of preventing death so much, it has failed to take notice of the suffering a person is subjected to while struck by an incurable illness or facing imminent death.

Health practitioners give up on such a patient as a case of failed treatment, and the life the person has remaining does not count. In the worst-case scenario, a patient undergoes procedures destined to fail until they let out the last breath. In any way, the patient's sense of being and peace is disregarded.

Medical science has the knowledge to reduce a dying patient's pain and suffering under the framework defined as palliative care, but the person finds himself or herself forgotten and abandoned.

In developed parts of the world, with Europe being the first, the quality of life of people dying is a perception that has penetrated into the minds of physicians and caregivers over the last century. Eventually, awareness grew at the social and community levels.

Bangladesh, however, is among the low-income and middle-income countries where it is still a new concept. According to The Lancet Global Health, 80 per cent of those who die an agonising death globally without any access to palliative care, live in these countries.

The beginning of palliative care in the country was in 2007 at the hands of Prof Nezamuddin Ahmad at Bangabandhu Sheikh Mujib Medical University (BSMMU). Influenced by a book, he took a six-week training from South India two years earlier, and from then on, he has pursued the cause of encouraging doctors, nurses and many other individuals to lend their hands for bringing a wave of change to what he calls a "robotic approach of medical science."

The collective voice became strong enough only recently to get national guidelines on palliative care for healthcare professionals.

Over time, the small unit at the BSMMU that began providing patients with the services, turned into a department in 2015 when the government recognised palliative care as a speciality.

A handful of other initiatives also came into being by that time, such as ASHIC (A Shelter for Helpless Ill Children) foundation that is committed to support children with cancer, and Hospice Bangladesh.    

These are definitely small stepping stones to making palliative care available and accessible. "But there are lot more things to be done, than what has been done," Nezamuddin said.

When asked about why palliative care is necessary, he said that when a person is diagnosed with an incurable disease, his psychological, social and spiritual existences are shattered along with the physical one.

 "The care is to make a person whole again and help him or her grow until death," he added.

With the shift from communicable to non-communicable diseases, patients need such care more than they need traditional treatment.

Emphasis on home care

A divisional-level analysis by Prof Nezamuddin has put the number of people needing palliative care at nearly 6 lakhs. The serious health-related suffering database 2015 came up with 7 lakh people who suffered from cancer, dementia, lung disease, HIV, heart disease and renal failure.

"It is not possible to give them the care they need through traditional means… We have to engage the community," said Nezamuddin.

Awareness among health professionals and people would prompt some of them to take up opportunities for caring for the patients either professionally or voluntarily. There has to be the scope of training for them.

Shahinur Kabir, who founded Hospice Bangladesh in 2013, said home-based service is the solution – meaning doctors, nurses and social workers would help families cope with the burden of caring for their loved ones who have been going through serious illnesses at home.

 "Staff of community clinics should be trained so that people in furthest corners from the cities also get such care when needed," he said.

Shahinur has a team of 46 nurses and five doctors at the Hospice for providing services in exchange for payment and for free as well, depending on the financial condition of the service seeker.  Annually, they support 1,500 patients in Dhaka.

One major issue that nurses confront while giving services at home is that they are quickly relegated to the status of a helping hand.

Still, the profession could be rewarding, said Shikha Haldar, a nurse working with the Hospice for five years, while recounting days when she felt a close association with her patient. A 65-year-old woman, completely paralysed, is now dependent on her for the fourth year following a heart attack.

 "Pain of the patient is what I feel sad about the most," Shikha said.

Wave of change

To acknowledge the contribution of nurses such as Shikha, a Bangladeshi-born US immigrant Rifat Akhter introduced a programme in 2017 to award nurses. Several sponsors from home and abroad joined her effort and expanded it to include fellowships for doctors this year.

Under the fellowship programme, the doctors will receive training in India.

Rifat says that she was motivated by Shikha's support in her toughest ever episode in life caring for her mother in death bed in 2016. Back in the US, she has joined groups of volunteers to provide care to critically ill patients after training.

This is an example as to how people of every stratum can get and provide support, as Nezamuddin says, "Quality of end of life matters."

The government should incorporate palliative care into the health policy, which would then create the scope of collaboration with private partners to make it cost-effective and widely accessible.

Moreover, essential pain-relieving drugs such as morphine have to be available and subsidized.

Little support from all sides would make the changes happen in the healthcare system and that is necessary, maybe, for all of us.

 "Cost is not a matter of concern here because it [palliative care] is high touch, low technology discipline," Nezamuddin said.

While a dearth of manpower and resources causes many to live a crippled life until death in this country, palliative care is even more necessary. But the matter is not getting the attention it deserves because sufferings of these people remain hidden.