By Claire McMahon
I am a doctor currently working in hospital medicine and hope to enter a GP training scheme this year.
After completing my internship in University Hospital Galway, I like many others chose to take some time out of hospital medicine in order to gain some new experience.
After a chance meeting with two GPs, Drs Frank and Patricia Hassett, from my home town of Ennis, Co. Clare, I learned of a small palliative care clinic in the township of Jinja, which is located in central Uganda. I was instantly intrigued and decided to see how my medical experience could be put to good use there.
Frank and Patricia set up this hospice five years ago and are still actively involved in running it.
I travelled as a lone doctor to head up a palliative care service dealing with end stage HIV and all cancer patients.
I soon learned that I would be working in an underdeveloped primitive health care service. Hospice Jinja was set up in 2005 to cater for cancer and end-stage HIV sufferers, with its main aim being to bring modern accepted methods of pain and symptom control to the most vulnerable of an already chaotic and deprived society.
Within the hospice's catchment area of around 60 km square we had a patient list of 350; however the population within the same area is 4.6 million.
Within the Ugandan hospital system there is a dire lack of the type of facilities and services that we in the developed world take for granted, especially in the area of cancer care - for the average Ugandan there is no access to radiotherapy or chemotherapy as the majority of the population cannot afford the treatment.
In effect, for the majority of individuals once they are diagnosed with cancer they are simply biding their time until it consumes their being.
HIV/AIDS affects two million people in Uganda. Yet things are improving, with prevalence rates dropping, thanks to effective government and aid agencies' education and treatment programmes.
However, the fact remains that those people who are less economically well-off receive little or no assistance from the health system within Uganda. Less than 1% of the Ugandan population, for example, has access to anti- retroviral drugs
The majority of end-stage HIV and cancer sufferers are aged between 25-40, which ultimately has a major effect on their families, as they are normally the breadwinners. There are two million orphans in Uganda as a result of HIV/AIDS deaths.
We met several HIV/AIDS orphans who were tragically themselves infected with the deadly virus. One little nine- year old girl in particular was a patient of ours with terrible skin conditions associated with HIV/AIDS.
Her parents died of AIDS, and she is been cared for by charitable neighbours. It is a sad story but one which is common across the length and breath of Uganda as the effects of HIV and cancer are felt by nearly every family, rich or poor, in one way or another.
If I describe the daily work carried out by Hospice Jinja, I can express the gravity of the situation more clearly.
Our day typically begins with a morning payer and hymn at the base clinic in Jinja, and from there the team would travel out to the various outreach clinics. We set out on bumpy, dusty tracks through the countryside to the surrounding villages.
The hospice team consists of three palliative care nurses, a co-coordinator and a driver, with the voluntary input of medical doctors. The aim of the hospice is to improve the quality of life of patients and their families who face life threatening illness such as HIV/AIDS and cancer.
The team’s emphasis is on a holistic approach to care, by providing relief from pain, social and spiritual support, counselling and bereavement after-care. The medication supplied is typically liquid morphine for pain relief as well as antibiotics for symptom control.
Each week the team visits the local public hospital. We see all palliative care patients in the hospital and essentially determine how they are cared for while at the hospital. The hospital is amazingly basic, with metal beds, glassless windows and very basic toilet facilities.
The family members must provide bedding and food as the hospital merely provides medical care. The hospice team regularly supplies medications to the patients as the hospital pharmacy is terribly understocked. The TB ward, which has acutely infected patients is surprisingly not an isolation ward, but simply has a small poster asking patients “to cover your cough”!
Outreach clinics are very basic, with no medical facilities, no electricity and no running water. The team must bring everything including medications, hygiene washes and wound care bandages.
The clinics run much like Western clinics, with history-taking (via a translator), examination and re-issuing medications and organising follow up appointments.
The hospice also does home visits to those patients who are bed-bound or too ill to travel to the outreach clinic. On a personal level it was an amazing experience to be invited into a patient’s mud hut.
These huts are so basic it’s hard to imagine how people live here. The huts which are roughly the size of a small kitchen in Ireland, may house a family of eight or nine and consist of mats as bedding, with some simple cooking pots in the corner.
These people are so welcoming to the hospice team and the overwhelming feeling is of gratitude.
As we visit these huts we are surrounded by all family members, neighbours and children from far and wide, all anxious to get a look at the visitors. Everyone has a smile for the hospice staff as they are appreciative of their work and kindness.
It is inspiring to see how warm, welcoming and spiritual these people are, even though they live in such poverty and endure some terrible hardships. The stark reality of life for these vulnerable dying patients and their families is that without the aid of hospice they face a terrible painful death without any help from any health care services.
The family members who care for these patients are faced with terrible difficulties. They must single-handedly attempt to treat and care for their dying loved ones who are often in severe pain and have difficult associated symptoms.
The hospice is aptly named “The Ray of Hope Hospice” and it is just that for these patients and their families. A particular case comes to mind to illustrate this:
A young man in his 20s with a large fungating eye tumour in his right eye has been a patient of the hospice for some time. His tumour requires regular cleaning and antibiotic/antifungal treatment. However some time back the patient lost contact with the hospice team for approx 4 weeks.
The team travelled out to his hut in the remote countryside after his prolonged absence from the clinic. We found him at his home, too weak to travel to the clinic. His wound had worsened and was now infected with maggots. This was because of his lack of access to medical care and his poor living conditions.
Without regular contact and the personalised care of the hospice, these people would endure terrible hardships, as they are utterly isolated from state health care.
These people are quite remarkable.
How families and patients can be so warm, welcoming and in good spirits, while living with the backdrop of inevitable death, suffering and absolute poverty is truly inspiring. Poverty and malnutrition are widespread; 40-50% of children are malnourished.
Although primary education is free, families still can’t afford to send their children to school as they are unable to afford the uniforms. Literacy rates are low, 40% of women in Uganda are illiterate.
During my time there, I dealt with some truly unimaginable conditions. Illnesses I have only ever read about in books were common, such as Kaposi Sarcoma and leprosy.
I have seen the most aggressive malignant tumours imaginable. Women with massive eroding breast tumours, horribly eroding cervical cancers, HIV/AIDS patients with terrible skin conditions and some massive eroding skin tumours.
I have seen the true capability of what cancer cando without any treatment intervention.
Some cases have strongly remained in my memory:
A single mother in her 30s with HIV, cervical cancer and leprosy. Once she became sick her husband left her, leaving her in total poverty with only her 10-year-old son as her carer. The hospice has been involved in this case from the early stages.
As her condition detoriated, it fell to her son to care for his dying mother. The hospice staff had to train him on how to give his mother the medication, the morphine medication and how to generally care for his bed-bound mother. This is a difficult task for an adult, let alone a 10-year-old boy.
They received no support whatsoever from any government agencies or health services.
The hospice has developed a social fund, which involves giving those people most in need a small amount of money to buy food and basically survive.
The fund is around two euro, and is given fortnightly. The fund was given to this boy to buy some food for himself and his mother. He didn’t attend school as he was required to care for his mother full time.
Unfortunately the mother died while I was working with the hospice team. We attended the funeral and offered our sympathies to her son and the neighbours. The stark reality we all felt on leaving was of an illiterate, uneducated young boy who was now totally alone in the world.
We enquired about children care/orphanages, and we were bluntly told “he’s too old” we only take children under the age of six. We can’t help to think every now and then, how he is or what has become of this boy who has been given a terribly difficult start to life.
The basic concept of the hospice is to provide dignity and respect to those who are dying, to help their families care for them, even in terrible conditions. The hospice helps people who have been excluded from society because for their illness.
These people are the most vulnerable in society and yet they are the least cared for. The hospice provides physical, emotional and spiritual help to the patient and their families.
One of the obstacles to palliative care in Uganda is the sheer lack of knowledge and ignorance of it as a service, not only among the public but moreso among healthcare workers. For example, we met two nurses in an outreach clinic who were completely ignorant of the meaning of cancer or palliative care.
During our time there we found the need to publicise the hospice and make people more aware for the service it can provide.
We set about educating the public of the service the hospice can off them free of charge (unlike most health services in Uganda).
We developed simple posters in English and Ugandan to put up in the local clinics and public areas. We developed three new outreach clinics around Jinja; these rural areas had never had health services like this before. These clinics are now up and running and thankfully the hospice service is reaching more people in need.
The difficulty in expanding the clinics are time, fuel costs and of course education. Firstly we had to educate the local health care staff about palliative care and what type of patients they should refer to our service. We had to organise community volunteers; these are local people who volunteer on behalf of the hospice to find patients in their area that would benefit from the hospice care.
These people volunteer their time and energy to ensure their neighbors avail of the services that hospice provides.
The hospice also runs a day clinic, which runs every Monday from the base centre in Jinja. The driver transports different patients from the community each week so they can enjoy a day at the centre.
It offers them a chance to meet other volunteers, family members and patients, as well as singing, dancing and learning new skills. Each week a new skill is taught, a bead-maker shows people how to make bead necklaces and they can them sell them at markets organised by the hospice.
This provides patients a chance to earn some money and contribute to their family in some way.
This trip has given me an opportunity to experience wonderful kindness, remarkable human spirit and resilience in the face of suffering, poverty and utter hopelessness.
(Persons wishing to help with the charity can contribute through the website www.hospicejinja.org)
This article first appeared in Forum, the journal of the Irish College of General Practitioners.
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