Palliative Care: Dying in Pain

“See that patient in Room Six? Half his neck is missing. He has cancer of the larynx. That pain is something we cannot conceive. If we had the delivery system, we would stick a patch on him every four hours, which would relieve him of pain without causing pain.

How can I inflict him with an injection every four hours? For years we have been battling to bring pain control drugs to dying cancer patients. We have had numerous conversations with the Minister of Health, Fuad Khan, apprising him of the situation. We have, at his request, sent him lists of drugs we urgently need to control pain in the dying among us, with no results.

“Our country does not match up the World Health Organisation (WHO) standards for a humane society. Barbados is far ahead of us. There is no shortage there. Even sub-Saharan Africa, which has nowhere near our wealth, is virtually saturated with pain-relieving drugs for the dying. “I have come to you because it can’t get worse.”

—Dr Jacqueline Pereira Sabga, the chairman and medical director of Vitas House Hospice.

Seconds after I walked into a spotless, airy building which made me think of a cheerful children’s library rather than a hospice, Lilia Mootoo, the general manager, a briskly efficient woman, asked: “You afraid of dead bodies?” I made a non-committal sound as she walked me through a large hall with 12 cubicles and a doctors’ central station and ushered me to a bright dining room glowing with afternoon light where we joined Dr Jaqueline Sabga, chairman and medical director of Vitas House, and Pat Stollmeyer, the co-founder of Vitas and retired registered nurse trained (in the UK) in pain management.

Of course I was afraid. Few people aren’t when faced with the inevitability of our human fragility and mortality. I addressed the three women—Lilia, Pat and Jaqueline—who have dedicated their lives to the dying, and who fill in one another’s sentences speaking volumes of their close teamwork. “What’s it like to watch people die all the time?”

“We have helped 276 people make that transition from life to death. We ask them, what do you fear the most about death? They say they fear being in pain, not being able to breathe, dying alone. And we say if we can guarantee you that you will not be alone, that you will not be in pain and discomfort, does that take away the fear? It does.

By keeping patients pain-free, we restore an essential dignity to them, empower them to make decisions, allow them to talk through their fears. All of them died with an extraordinary grace which never fails to inspire us.”

From the corner of my eye I glimpsed two men carrying out a body on a stretcher. There was nothing to indicate the horror we associate with death, or cancer and its attendant emotions of fear. Outside, the sun was hot. There was a view of the Savannah. There was a bed of orange around an immortelle tree. “What did the patient die of?” I asked.

“Lung cancer,” said Lilia. “He was a smoker and drinker. He came the day before he died. “Some days it’s almost empty, like now, and other weeks and months are hectic, with every cubicle being occupied,” she added. The women tell me that the three other cubicles are occupied by patients in various stages of advanced cancers of the colon, thyroid and larynx. Two had been there for several months and the third for a week. They were comfortable and their families assured they will have virtually pain free deaths.

Unfortunately, Dr Sabga tells me, most patients nationwide, due to the shortage of analgesic drugs, aren’t that lucky. Many will die in pain, many “writhing and screaming.” Dr Sabga is in turn saddened and enraged that so many of our ill people die without pain relief, without humanity.

Dr Sabga: Ministry of Health refuses to level with us

She tells me that after an initial meeting with the Minister of Health, Fuad Khan in August 2011, she (on the minister’s request) shot him off a letter listing the shortage of drugs in the country’s public and private pharmacies, including morphine elixir, fentanyle patches, morphine immediate release, oxycodone, and buprenorphrine.

After that, nothing. “Despite repeated calls and texts to the health minister, 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.

“Many cancer patients would rather die than go through the drudgery of a government system where they are told, ‘Come back, we ran out.’ “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.

“A few years back, Pat and I went to see a patient dying of head and neck cancer. He couldn’t swallow, had a feeding tube in his mouth and had extensive mouth and tongue lesions. “I called the FDA and they said they had no patch for his pain. They told me to give him slow-release morphine rectally, although they weren’t sure it would work.

“I was shocked. I said, ‘Do you know the indignity and added pain I will be giving this already suffering gentleman, for a solution that may or may not work?’” A humane society should not even be having this conversation, I thought, as I drove out of the St James Medical Facility.