To be honest, we never wanted to call our hospice a hospice. Built as a temporary structure in 1993, rebuilt in 1995, and again in 1999, ours was the first, largest, and only free AIDS hospice in Bangkok for over ten years.
But our goal from the first day we took in hospice patients was to help them return to their families. For us our hospice was not by definition a hospice; it was a bridge back home.
Through 2003, until anti-viral medications became accessible to the poor, we took in up to 300 patients each year, most of whom died in peace at our Mercy Centre.
Yet, even in this first decade, through nourishment, rest, and emotional support from family and Mercy staff, many patients were able to return home.
One former patient, Apiwat Kwangkaew, volunteered to help pioneer our home-based care program (Today he is president of TNP+, the Thai Network of People Living with AIDS.) Along with several additional former Mercy hospice patients, we began to develop the methods and means to help those afflicted live at home with their families.
From the beginning, by necessity, we focused on the relationship between the patients, their families, and community. At that time, almost everyone in the slums was ignorant and scared of AIDS. (Even our hospice had to be called something else so that our neighbors wouldn’t protest its existence.)
To overcome ignorance and discrimination, we created three-way partnerships between our hospice staff, our patients and their families – a partnership that worked as follows:
- We asked the families to share in the hospice care of their family members;
- In return, we provided counseling to the families and taught them home care skills; and
- The patients agreed that they would contribute to the maintenance of the hospice as much as they were able.
It often took several months of counseling, sometimes even years, to unite families and patients and bring them home. Sometimes we also had to provide outreach and education for neighbors and community leaders. It was rarely easy.
Flash forward to 2012…
As our hospice needs diminished, our homecare program grew and continued to expand to its current reach of hundreds of families spread across 60 slum communities, as well as four major government hospitals. We now provide care and counsel to over 5,000 poor adults and children every year.
Today our greatest homecare challenge remains in trying to unite patients and families. We have learned much from our experience, and there is much to be hopeful for.
Poor people living with HIV begin treatments earlier. They are stronger, both physically and psychologically. They understand that their lives are not over, that they can lead productive and aspiring lives in their communities, at home and at work. If they become ill, our teams can care for them in their homes; and if they become incapacitated, they may enter government hospitals and receive free treatment. (A hospital registration card for Thai citizens costs 30 baht - approximately one US dollar.)
For all of these very positive reasons, we were able to close our hospice in 2012.
Recognition: Sharing What We’ve Learned.
Many AIDS organizations in Thailand and abroad now recognize our Mercy Centre as a regional leader in home-based care and have asked for help.
In 2011 we formalized our home-care training initiatives as a permanent program and began conducting workshops along the Thai-Burmese border for the Mae Tao Clinic and various health organizations serving refugee populations.
Also in 2011 Her Royal Highness Princess Ashi Kesang Wangmo Wangchuck of Bhutan visited our Mercy Centre for a two-week hands-on workshop in order to prepare for the opening of Lhak Sum, Bhutan’s first HIV/AIDS Care Clinic. Following her visit, Princess Kesang invited our homecare training staff to Bhutan to meet with the Lhak Sum Group, as well as the Ministry of Public Health, and begin a training program for the new clinic’s care providers.
Before we conduct our workshops, we make on-site visits and evaluations. The workshops that follow, also conducted on-site, are tailored to the needs of the organization. Post-workshop evaluations and training sessions continue.
This year we will be conducting ten more workshops throughout the region, including seven for PSI Thailand.
It All Started with Our Hospice – A Blessing in Disguise
Mercy Centre always has been and will be a celebration of life in our beloved slums. Our hospice, even during its bleakest early days, was never an exception. Our hospice patients were our family, and we celebrated every new day beside them.
To keep the moms and children together, we opened a beautiful and loving Mercy Home just for them. These were the most wonderful and deserving children in the world! And while many of them fell ill and died quite young, those that remained were so full of love of life, they gave us strength to celebrate each new day.
Today, our children living with HIV/AIDS are growing up stronger. They compete in sports and many are at the top of their class in school. And while their health and wellbeing are still of great concern, we can now direct most of our love and energy in preparing them for adulthood.
Over 60 children born with HIV live throughout our Mercy homes – not in separate homes as before. And we support dozens of moms and children who now live at home in their communities. Many moms are able to work, and we make sure all their children attend school!
And, finally, because of our hospice, we learned a world about home-based care – knowledge and experience we can share with organizations who are now pioneering homecare in their own communities.
In the future, with your support, we will continue to expand our homecare program and reach out further to help educate the poorest of the poor.
Education, outreach, and compassion – theses are the cornerstones of our future.
Thank you for your support through these many years!
Usanee and the Mercy Teams
Photos from top: i) Our old Mercy Hospice; ii) Apiwat Kwaengkaew, our first homecare giver and current president of TPN+, visiting a Mercy patient; iii) Teaching homecare in Bhutan; iv) A workshop home visit in Bhutan.