World Aids Day: How palliative care contributes to fighting the pandemic

Specialised medical care helps ensure the quality of life for people with a serious illness, such as HIV/Aids.

“Palliative care plays a critical role in the treatment of HIV/Aids sufferers.”

These are the words of Hospice Palliative Care Association (HPCA) CEO Dr Ewa Skowronska, who, on World Aids Day (December 1), shares how palliative care focuses on improving the quality of life of patients who have been diagnosed with life-threatening and/or life-changing illness.

“Palliative care provides patients with as much relief as possible from pain and other symptoms of a serious illness. There is often a misconception that hospices only care for those with a terminal condition – this is not the case. Often, people who come to us with challenges related to HIV/Aids go on to live fulfilled lives. We are there to assist them when assistance is needed.”

At some hospices, this type of care dates back almost 30 years and, according to Skowronska, 62 of the 91 HPCA hospice members are involved in the care of people living with Aids.

“Several member hospices are also involved in community outreach programmes focused on health education, the prevention of this disease and teaching communities how best to manage the illness.”

An ongoing pandemic

Statistics from the World Health Organisation indicate that by 2021, about 40.1 million people had died of Aids since the start of the HIV/Aids pandemic in the early 1980s. In 2021, 38.4 million people globally were living with HIV.

“It has been a long road and one that has seen shifts in both the treatment and/or prevention of this disease, as well as society’s perspective on it,” she explains.

HospiceWits CEO Jacqui Kaye agrees, saying there was a ‘huge knowledge deficit’ at the start of the pandemic.

“Fear, denial, anger and loss of self-esteem were felt. Also, there was the loss of jobs and the blaming of others for being infected. Some patients even committed suicide. There was also fear among medical personnel. All of this was compounded by misinformation and the spreading of myths. While we still have challenges, there is now at least sufficient information around HIV and Aids available.”

Treatment – or the lack thereof

In addition to a lack of information, there was a lack of treatment options in the early years, says Tapologo Hospice CEO Stephen Blakeman, who has worked with Aids patients for 27 years.

“When we started, there was no public access to treatment. Into the early to mid-2000s, the impact of the disease was significant, and the death rate was also significant. This had a considerable impact on families and, of course, on children.”

Cecily van Heerden, the CEO of Plett Aid Foundation and Hospice Plett, adds: “In the beginning, there was no treatment available. It was essentially ‘a death sentence’. The stigma was huge, and this caused people to avoid testing. This impacted on the subsequent management of symptoms. The number of deaths from HIV was staggering.”

The Department of Health declared the disease a chr

onic condition in 2010; thus, antiretrovirals (ARVs), which have been in use since 2005, became more readily available.

“As ARVs became more and more available, dialogue about sexuality, sex, prevention and so forth became easier to have. The stigma was also reduced. We now never have more than 16% of our total patients with an HIV diagnosis. Of those, less than 1% are in the terminal phase directly due to their HIV diagnosis,” says Van Heerden.

Hospice on the frontline

However, patients who are in a poor physical condition are still referred to hospices. Drug or alcohol addiction that renders the patient unable to manage their illness, co-infection with tuberculosis, mental health issues or even patients defaulting on their ARV medication, are reasons for this.

The stigma also remains in certain communities – and makes it clear that there is a need for ongoing education.

“This can be done through pamphlets and posters containing information on discrimination and addressing the mental health impact of experiencing stigma and discrimination. Hospices can also keep talking and educating others through the various interventions already taking place,” says Van Heerden.

Besides the vital importance of education, the right care is also critical in the fight against HIV/Aids, explains Skowronska.

“We remain committed to continuing to strive to ensure access to care services for all who may need them and to continue supporting our hospice members in the life-changing work they do.”

If you would like to contribute to one of the 91 hospice members’ advocacy and education efforts, visit https://hpca.co.za/monthly-donations/.

Read original story on highveldernews.co.za

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