Playing Politics with Palliative Care

Sometimes it takes a writer to spin a yarn but often, people tell their own stories. We only need to pay attention to what they say and what others say about them. Consider what Dr Jacqueline Pereira Sabga (chairman and medical director of Vitas House Hospice) said to me in an interview on April 22, 2012, on the shortage of drugs for patients in the hospice.

“Despite repeated calls and texts to the Health Minister (Dr Fuad Khan) after repeated promises to visit the hospice, after articles in the media, and radio and television appearances appealing for analgesic drugs, the shortage continues.

“The frustrating thing is, the Ministry of Health refuses to level with us. The situation is under a shroud of fog. No one tells us why our requests are going nowhere. We just keep getting put off. The only way I may get some resolution now is if I protest on the stairs of the Ministry of Health.

“Where is the conscience of the people in Government? Our plea is not just for drugs for our hospice but for all private and public institutions treating dying patients, such as a man dying of head and neck cancer. He couldn’t swallow, had a feeding tube in his mouth, and had extensive mouth and tongue lesions. We called, we asked. There is no patch for his pain.”

Now consider this statement to a member of the press by the same Health Minister, Dr Fuad Khan, in an interview with the press on October 14, 2014, (after an amazing couple, Sati Seemungal and his wife Chan, succeeded in fulfilling their 47-year-old cancer-riddled daughter’s dying wish—to open a centre to alleviate pain in the dying).

“A letter was sent to my ministry informing me of the date of the opening (of the Palliative Care Unit). Normally, whenever a project has to be opened it is at the availability of the minister, it is never the other way around. I was leaving the country, so it was impossible for me to open the unit on that day and that was communicated. Dr Mohammed’s name is also engraved on the plaque. That did not happen overnight. These plaques are done by an order. I cannot be the Health Minister and I am being sidelined. I would not have it. If that is what is happening, then it makes no sense. I am the Health Minister.”

Palliative care, which provides pain relief to the seriously or terminally ill, is not that different from hospice care, which focuses on end-of-life care. The difference is that while people may go to a hospice for their end of life, palliative care can bring patients relief from the time of diagnosis of a life threatening illness.

Almost two years ago, when I asked Minister Khan why he wasn’t able to supply drugs to the Vitas House Hospice, he blamed it on the public service drug advisory committee, which “sometimes takes up to two years to read documents.” He complained, they “don’t meet for months at a time.” He said he had informed the PS and DMO of the situation. His hands were tied. He said it was “a Public Service systemic error” rather than “lack of effort” on his part.

He said “I am working like hell to bring in the drugs.” In the last two years, I have been asking Vitas House Hospice if they were able to get the drugs they needed for cancer patients. Each time, the answer was a heart-sinking “No.” The efforts of the minister clearly led to naught, and cancer patients continue to die horrific pain-filled deaths.

In the last two years, coincidentally, I have witnessed the uphill climb of parents Sati and Chan Seemungal, who lost their daughter to cancer, to ensure that no cancer patient dies in pain. I witnessed, from the sidelines, their painstaking efforts working for the shattered, painwracked dying people amongst us: the numerous letters, phone calls and meetings here and abroad with health care workers, the experts they brought to Trinidad to train nurses, the patience, the persistence, the bureaucracy and red tape they ploughed through to get a centre opened.

Imagine then what I felt, Dr Fuad Khan, instead of lauding these selfless citizens for doing what should be his job (providing palliative-care facilities to the public), taking the thunder out of their project with a tantrum over not being the one to cut the ribbon, for not having his name on the plaque, thus sullying their hard work, their moment of grace, as “disrespectful.”

Dr Sabga, who is still waiting for Dr Khan to respond to her requests for drugs for Vitas House Hospice, has this to say:

“It takes remarkable people like the Seemungals (who don’t have a ‘disrespectful’ bone in their body) to take the most devastating moment of their lives—losing their daughter to cancer—to help others in their dying days.

“Those with power and influence need to focus on the bigger picture. To use power, to make a difference. To do the right thing. A name on a plaque is not the right thing.

“Who cares whose name is on a plaque? Does that make a difference to anybody?”

All the players have showed us the story without any intervention from this columnist.