Ruth works on a voluntary basis in the community. In her time as an independent practitioner, she has worked with about 20 patients and their families with issues ranging from cancer, dementia, other chronic pain syndromes. She spoke to ehospice about her work.
Can you tell me how you came to work in palliative care in Cambodia?
We recently relocated to Cambodia for my husband’s work. I was hoping to return to work in palliative care, but I was stunned when I discovered that the last formal hospice was shut just a month or two before I arrived.
Most palliative care here has been born out of caring for people dying from HIV AIDS, who were shunned by their families. Now with a brilliantly effective ARV programme, the number of patients dying from AIDS has dropped dramatically, but this has also closed the door on developing palliative care.
To get back into working in palliative care, I explored and networked very intensively, and I eventually found two small hospice-type places run by Cambodian people. I started helping there, doing training and giving clinical supervision to the staff.
Then word got out and people would approach me, directing me to people struggling with cancer.
I worked supporting families, training carers, guiding people with medical decision making. For example, I’ve met families who have sold everything they own just to have two cycles of chemotherapy.
I made contact with the organisation, Doulers Sans Frontieres (DSF), and offered to work with them as a volunteer. At that time, they did not have the capacity to take on volunteers, but later they approached me to offer me the position of nurse technical assistant.
Part of my job was to assist with the development of a palliative care unit. They were anticipating opening 15 beds in the free ward of the hospital. People are required to pay for most healthcare in Cambodia, but there are free wards for the poorest of the poor.
In addition to this, we were running national trainings in palliative care and oncology with nurses from government hospitals and other settings. There were plans to do home care and to do health awareness work, but the funding didn’t come through.
When the funding for my post ran out, I continued to help individuals and families who were struggling with serious disease and do more training for these small projects.
What is it like providing palliative care in Cambodia?
It feels absolutely imperative. It is essential to keep chipping away to grow the knowledge of palliative care. The depth of suffering here is so great. 70% of patients or more of those presenting with cancer, present at stage four with really advanced symptoms. And that’s just cancer. Cambodia has a growing problem with NCDs. Treatment isn’t available countrywide. People have to come to Phnom Penh and then many discover they have no hope of affording treatment. Home care and developing local services and local expertise is really essential if we are to try and alleviate some of this suffering.
It’s also really difficult to be confronted with so much need and have not many tools in the box to deal with it, nowhere to refer patients on to. In Cambodia, doctors and nurses do not offer comfort care, just technical care. Patients need to have family with them in the hospital to take care of their everyday needs, such as bathing, changing bed sheets and so on. Also, nobody advises the family on how best to take care of the patient once they go home.
Is there a particularly Cambodian understanding of a ‘good death’ and, if so, how does that relate to palliative care?
There is a belief that a peaceful death has an impact on the spirit’s afterlife. It’s a largely Buddhist society, so ancestry and rebirth are very important, but equally there is a fear of having someone die in your house, as there is a fear of the effect that will have on the spirit.
In terms of palliative care, people want to die at home and they do die at home. But I wonder is that really cultural or is it just because they tend to be removed from hospital they die, or for many that they never even reached a health care facility? They struggle at home with the effects of disease until they die. It is cheaper to move someone when they are alive than to move a dead body. This is too expensive for most people to afford.
Could you tell me a bit about how you have coped with providing palliative care with extremely constricted resources?
For me one of the greatest statements in palliative care is that I never say: “There’s nothing more we can do.” I’ve seen here what a difference being alongside somebody makes. Myself, or the person I’m supporting, the carer, becomes an anchor for the person who is suffering. If we believe there is something we can do and if we believe in the four pillars of palliative care, we can provide this care, even when resources are really tight.
Even the simplest of drugs make a big difference here. It’s helpful having the expertise from my previous experience, I have to really distil that. And I need to be realistic and just try things out. You can forget things like syringe drivers or community nurses to give injections on a regular basis.
The other thing is just doing small things, just starting small. It would be wonderful to develop a hospice, with a day care centre and a training centre, but I have to do what I can with what I have.
I have to accept that the people that I hear about are the people that I’ll help.
Has there been any progress on the National Strategic Plan for the Prevention and Control of NCDs? What is the place of palliative care in that plan?
It’s still in draft form, the NCD task force is following up on the status of the draft NCD plan. I’m hoping that as NCDs shift up the priority level, that that will have a big impact on Cambodia.
Palliative care has a thread that runs through the entire document and that is because, DSF was on that taskforce and that in every chapter that was appropriate, we put in palliative care.
The plan focuses on four big killers here, looking at cancer, cardiac failure, respiratory illness and diabetes. Concerted advocacy efforts by DSF and the NCD taskforce have ensured that palliative care language is woven through the entire document.
Is there anything we haven’t spoken about that you would like to add?
Another issue is truth telling and communication. Patients don’t really ask, but on the rare occasion that they do, they are told that everything is ok. This this is not an unusual scenario to be dealing with in palliative care.
Ruth, are you still involved with Palliative care in Cambodia at any level.
I am travelling to Battambang in November with a nurse who has palliative care experience (as do I historically) and would like to encourage in the right way as Im aware of the limitations of Palliative care and Khmer approach to endow life. Many thanks.