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Caring for the terminally ill in UAE: How palliative care providers help patients, families

From a mental and emotional wellbeing perspective, it is best for a palliative care patient to spend maximum time surrounded by family in home atmosphere

When patient SM was diagnosed with stage 4 cancer, she spent more than a year in the hospital before she self-discharged herself and walked out. She then came to palliative care specialist at Burjeel Hospital Dr Neil Nijhawan, whose first step was to have a 3.5-hour conversation with her.

“After we spoke, she said that it was the first time in more than a year that anyone had listened to her,” said Dr Neil. “People were telling her what she should do and what treatment she was going to get but no one explained to her how advanced the cancer was or what she could expect or even asked her what she wanted from her final days.”

The patient passed away a week later, comfortable and surrounded by her family. “Her family were grateful that she was happy during her last few days,” said Dr Neil. “I am still close friends with her husband, who is now an advocate for palliative care.”

Dr Neil is one among the small group of palliative care providers in the UAE who are making the lives of several ill patients easier for them and their families. The British expat, who was the lead for palliative medicine at Imperial College Healthcare NHS Trust in the London, is now hoping to change the narrative of the field of medicine in the UAE. He is also the first representative from the UAE in the World Health Organisation (WHO) regional palliative care expert network. Palliative care is usually provided to those who have serious, complex, and most often terminal illnesses.

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In the last year alone, Dr Neil has seen over 1,000 referrals. However, according to him there are not enough providers for this type of care and that needs to change. “The UAE as a whole, has a very young population with the number of geriatric patients considerably low,” he said. “However, the incidence of cancer is increasing with more patients in the 20-49 years age group being diagnosed. There are lots of complex conditions that come with cancer which can be managed as part of palliative care.”

High Demand

According to Sarah Ilyas, Chief Nursing Officer, Aster Hospitals and Clinics, UAE & Oman, the demand for palliative care has gone up significantly in recent times. “Hospitals cannot afford to accommodate long term care patients in acute care providing facilities,” she said. “Besides, palliative care patients are vulnerable to infections and keeping them in hospital environment could be a risk.”

She said that from an economic point of view, palliative care worked out much cheaper than hospital stays as well.

“Patients don’t have to pay for hospital bed, they are at the comfort of their own home,” she said. “From a mental and emotional wellbeing perspective, it is best for a palliative care patient to spend maximum time surrounded by family in his/her own home atmosphere. This might aid in better treatment response.”

Challenges

Despite the demand, there are several challenges for palliative care in the region. One of them is the attitude of families, according to Dr Rahul Unnikrishnan, Elderly Care Medicine Specialist at Rashid Hospital. “For many, switching their loved one to palliative care is equivalent to giving up on them,” he said.

“They don’t understand that it is only changing the approach to a more comfort-driven atmosphere. They think the doctor is trying to play God and decide when the patient dies. If your loved one is ill, you don’t want them to spend their last few days stuck in an ICU where they get to see you for a few minutes every day and with tubes sticking out of every part of their body.”

Dr Neil agreed. “We need to have hospices or physical building where palliative care units are,” he said. “The aesthetic is much gentler as it doesn’t have clinic-like atmosphere. We have an opportunity to start building something like this in the UAE.”