Advance care planning needed in Jamaica

With an ever-growing ageing population and increasing lifestyle diseases, experts are calling for greater focus to be placed on advance care planning. Advance care planning is the process by which adults at any stage of their life plan future medical care.

For life coach and death doula Patrice Dwyer, there is an urgent need for end-of-life planning as public reservations about matters relating to death have stifled conversation on the issue.

“We need to start recognising that the way life is, anything can happen at any time. So, we need to be more comfortable with the idea of death. We mix up death and dying. There is a dying process, and then there is death. It is two separate things,” she said.

Dwyer explained that she has seen several examples where family members went against the final wishes of their terminally ill relatives. In some cases, this has even caused confusion among families, as different relatives have conflicting views about what are the final wishes of the deceased.

She added, “I have had people who wanted their bodies donated and their family is not okay with that, and they did not put something formally in place, or [they] don’t want to go in the hospital, but the family goes against that and put them in hospital.”

According to the Ministry of Health and Wellness, in 2015, an estimated seven out of 10 Jamaicans died from the four major non-communicable diseases: cancer, cardiovascular disease, diabetes and chronic lower respiratory disease. Many of these deaths were premature.

Thus, Dwyer argues that important matters that should be considered must include what a family should do if their relative becomes suddenly ill. However, she clarified that even though advance care should be discussed, she is not in agreement with euthanasia being made available.

She explained, “Before we can jump into giving people the right to decide whether or not they want to end their lives, we have to first start talking about ... if we get sick, who have we designated on our behalf if we can’t speak for ourselves?”

Senior medical officer and consultant in oncology and palliative medicine at the Hope Institute Hospital (Hope), Dr Dingle Spence, also shared this view, as she emphasised the need for palliative care in Jamaica.

“We need to talk about advance care planning. We need to start having a conversation about death and dying, because everyone is so afraid to talk about it. It is so embedded in our culture that we don’t want to talk about that stuff, as you might hasten the process,” she told The Gleaner.

Palliative care is aimed at relieving suffering for people who are seriously ill, especially those who are near the end of their life. Therefore, she explained, palliative care is opposed to euthanasia.

When asked about the number of people who requested euthanasia, she said, “Of all the 20-plus years I have been doing palliative care in Jamaica, I can probably count the people on one hand that said, ‘You know, can you just give me something to go out?’ It is very rare.”

Spence suggested that palliative care is needed in primary care facilities such as health centres, and at least one palliative care post should exist in Type B facilities. Spence noted that there is a demand for palliative care facilities in Jamaica as Hope, which also administers a one-day clinic at the Kingston Public Hospital, is the only public-sector institution that specialises in this treatment.

“What we do at Hope, we are pretty much a specialist centre. But because no one really does it in the public sector, people come from far. Patients come from places like Black River for their pain medicine at Hope.”

Palliative care is recognised by the World Health Organization (WHO) under the human right to health. The WHO recommends that this form of care should be provided through a person-centred and integrated health services that prioritises the needs and preferences of individuals.

Spence shared that she has observed cases where people go bankrupt receiving expensive care that does not improve the situation. “One of the things that is missing in that conversation, is communication between the medical team, patient and family. That communication gap is where lies a whole heap of problems in medicine.”

She believes that by focusing on this form of treatment, fewer persons would need to be hospitalised, as they can be treated at home.