World AIDS Day, December 1 is aimed at uniting people in the fight against HIV, showing support for people living with HIV, and commemorating those who have died from AIDS-related illnesses. UNAIDS theme for this year’s campaign was My Health, My Right.
By Lara Pickford-Gordon
Mercy House hospice, run by the Living Water Community (LWC) began operations April 2006 offering care to persons with HIV. Current Administrator Joanne Sankeralli said it is the only “home away from home” providing care for persons living with HIV/AIDS. As such, it strives to avoid the clinical hospital feel.
“We touch; we feel; we laugh—we engage that type of care with all our patients. Human interaction plays an integral part, embracing them and helping them understand. This is not totally a medical institution. This is their home away from home,” Sankeralli said in an interview last Tuesday.
Mercy House occupies a converted single-family home and has just a nine-bed capacity. Patients require full-time care and about 80 per cent of them are bed-ridden. Motor skills and speech are both impacted by the virus.
Sankeralli explained that treatment is a combination of palliative care, social interaction, nurturing, and helping the patient reintegrate into a state of wellness not only medicinally “but also spiritually, emotionally, socially”. Daily prayers and Eucharistic services twice monthly are part of the routine.
Anti-retroviral medications to combat the Human Immunodeficiency Virus (HIV) are supplied by the Medical Research Foundation (MRF), which refers persons after assessment. They are monitored by doctors, some of whom are available through the MRF.
Medication needed to treat conditions associated with being HIV positive or other pre-existing chronic ailments are supplied by NIPDEC’s pharmaceutical warehouse C40 which is responsible for supplying all public health institutions and Chronic Disease Assistance Programme (CDAP).
Certain medications are available in limited supply but antibiotics and seizure drugs may “have to be sourced privately” at a cost. “It is very challenging for us to meet the entire needs of the home in terms of medication,” Sankeralli said.
To respond to this predicament, a meeting is held with the “next of kin” of the persons referred, for their assistance in purchasing the required medication. Socially displaced patients do not have family support, in which case the facility relies on “the good will” of donors.
Sankeralli added: “We ourselves have to find the means of sourcing the funds to pay for the medication and other supplies that they require.” Patients’ needs include toiletries e.g. adult diapers. LWC provides three meals and snacks, and laundry is done in-house.
Patients stay from one day to months or years. Some persons opt not to stay. Sankeralli explained: “Oftentimes, and this is information we get through MRF as well, persons recently diagnosed with HIV or have not been coping well can be in a denial state… and they don’t want to be part of an institution. In most cases they are reluctant to come.” These individuals choose to manage their condition with medication. Mercy House cannot prevent anyone who against medical advice leaves treatment.
“When patients are placed in our care they are very, very weak. The immune system is so depressed that they need the extra care of someone giving them the medication. Sometimes that is vital…the accuracy and regularity of medication is a critical part of their health regime,” Sankeralli said.
During this time, improvement is seen and the patient desires returning home. “Here is meant to be a stepping stone, to bring them to that place where they are well enough —physically, emotionally, socially— to reintegrate them back into their home and lifestyle.”
Although there is a strong desire to leave, before the patient is discharged the doctor conducts an assessment, taking into consideration how the patient is coping socially. Sankeralli said, “They need to understand the importance of following through what we have started with them.” For patients in a terminal state, a peaceful and spiritual environment is created. “No one is left alone in their final moments.”
The round-the-clock care given brings a human resource challenge; additional nurses are needed but there is a shortage even for public health facilities in the country. Sankeralli hopes medical professionals such as physiotherapists, opticians, and dentists, will come forward giving time and talent.
Regular transportation for patients whose families cannot assist when they have medical appointments, and lack of air-conditioning in wards are other challenges. “There are many areas we are hindered by but notwithstanding that, we do the best we can with limited resources,” she commented.
Sankeralli has been administrator for over one year and responded that relatives are generally supportive, spending “family time” with the patients. There were a few instances of clients whose families dropped them off and never looked back. Family or not, she said staff try to be like family to patients. “We promote inclusion rather than exclusion. It is part of our way.”