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
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
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.