Care when cure not possible

Former college teacher Mitali Akter these days finds instances when she is able to reminisce about the glory days she spent at the vast campus in Kishoreganj.

For someone living with unbearable pain in the stomach, frequent vomiting and lack of appetite, being able to have the peace of mind and recall the enduring memories of her beloved students and colleagues is a blessing.

Compared to the state of mind she was in only a few months back, Mitali is more at peace now since she was admitted to the Centre for Palliative Care (CPC) at Bangabandhu Sheikh Mujib Medical University (BSMMU) in the capital.

Mitali has been fighting with uterus cancer since December last year when she was diagnosed with it in an advanced stage. Her diet now has mostly been replaced by intravenous saline as she can barely have any real food orally.

This condition has taken a toll on Mitali and she has lost weight significantly. This once-vibrant career woman is now frail and confined to bed.

The excruciating pain and mental distress in Mitali's everyday life have become more manageable since her husband, Shafiq Alam, got her admitted to the palliative care centre, also known as a hospice -- a health-care facility specialising in pain control and emotional support for the terminally ill and family alike.

"What's more comforting [about the CPC] is that nurses and doctors are readily available any time I need them," said Mitali, with a sigh of relief, lying in her bed at the CPC.

She no longer has to tolerate the pain for too long as the caregivers and doctors at the CPC are always watchful and they administer necessary painkiller, chiefly morphine, whenever required, she added.

Mitali had gynaecological complications before being diagnosed with uterus cancer last December at the BSMMU and the radiotherapy treatment the doctors were giving her over the following three months seemed to be going well, said Shafiq, Mitali's husband.

But as her condition deteriorated gradually, she developed constant symptoms of severe pain, nausea and loss of appetite. The doctors then referred her to the CPC, which is of great help for such patients with need for extra care, he explained. "The service here is quite good. The doctors and nurses here are really caring for their patients." 

This is exactly what a palliative care facility is supposed to provide, said Prof Nezamuddin Ahmad of Palliative Medicine department at the BSMMU.

This sort of specialised care is recognized worldwide, but it is quite new in Bangladesh, he told The Daily Star on the eve of World Hospice and Palliative Care Day, which is being observed today with the slogan "Living and dying in pain: It doesn't have to happen". 

The CPC at BSMMU started its operation in 2007 when it was initially a unit of the hospital. Later upgraded to a full-fledged centre for palliative care, the CPC, beginning this year, has started to offer a course on doctor of medicine in palliative care.

In recent times a few non-governmental organisations as well as medical facilities, such as Dhaka Medical College Hospital and National Institute of Cancer Research & Hospital, have introduced palliative care services.

According to Prof Nezamuddin, around six lakh patients in the country need palliative care at any point in time. However, the country, till date, has a capacity of treating only 2,500 of such patients annually. "In comparison to the requirement, the services available from these organisations are inadequate."

A hospice or palliative care facility provides a specialised service that regular hospitals are not equipped to provide -- a holistic approach to care, focusing on comfort, dignity, and emotional support for not only for the patient, but also for the family members and caregivers. In addition to regular medical care to patients, a hospice in developed countries provides grief support or counselling for family members, as young as a seven-year-old child. 

A full service hospice there operates 24X7, with a team of staff members consisting physicians, nurses, social workers, home health aides, chaplains or clerics (such as a priest, rabbi or imam), bereavement counselors and volunteers.

With the recommendation of a patient's physician, the services of a hospice is not limited only to the terminally ill, but it is available to patients with a wide variety of conditions, including congestive heart failure, Alzheimer's disease or dementia, chronic lung disease and more.

Why palliative care is important?

Patients with incurable and life-limiting illnesses, such as cancer in advanced stage, HIV/ AIDS, paralysis or serious damage to organs, are usually sent home by hospital authorities as "our health system provides basic preventive and curative care," Prof Nezamuddin said.  

At best, such patients are kept in intensive care units (ICU), costing a large amount of money. Although patients in ICUs are supposed to get palliative care, the high cost incurred at the ICU is not a viable solution for these patients, he added.

Seventy percent cancer patients and 60 percent AIDS patients suffer massive pain. Apart from administering necessary drugs, doctors and nurses at a palliative care facility relieve these patients' pain through building honest communication with patients and exhibiting empathy toward them.     

"This way we reduce their physical as well as social and emotional pain," said Prof Nezamuddin, adding that a healthy community means the one that takes care of its dying members. "When there's a system like that, it becomes a civilised society."

It is a positive sign that more and more physicians in the country these days are recommending palliative care for such patients who need extra care, he observed.

Dr Iqbal Arslan, secretary general of Bangladesh Medical Association (BMA), said the need for palliative care is growing day by day as non-communicable diseases such as cancer, cardiac disease, etc., are on the rise with a large section of the population growing older in the near future.

"We need to ensure that they live pain-free" and there will be a need for more doctors and nurses specialised in palliative care in the country to achieve this objective, he observed, saying that the authorities, in order to address this impending situation, will need to introduce palliative care in all large hospitals in cities and districts at a steady pace.

"BMA will observe the day [World Hospice and Palliative Care Day] for the first time this year to shed light on these issues with a greater emphasis," Dr Iqbal said.

Names of the patient and her husband have been changed for their privacy.