Can you start by telling me a bit about the general context of providing palliative care in Lebanon?
First of all there is a very unstable political situation. The countries surrounding Lebanon are in a state of chaos. We are in the centre of the Middle East. There is political and economic instability, as well as a poor socioeconomic situation.
Armed conflicts can happen at any time of the day. Although there is not war all the time, the security situation is unpredictable.
At Balsam, we are committed to providing our services to anyone who needs them, regardless of ability to pay, national, religious or political affiliation.
Unfortunately, this non-affiliation also contributes to one of our main problems which is a lack of funding. In Lebanon, donors tend to support organizations that provide services to a particular political or religious group. As we are not aligned to a particular faith or political movement, we can often miss out on this source of funding.
What is it like providing palliative care in an area where there is armed conflict?
It is not stable at all. There are, for example, many refugees and asylum seekers. The Lebanese borders are permeable and most recently there have been many Syrian refugees settling in the country. These refugees don’t have legal or social protection. They have no access to healthcare.
In Lebanon, people do not know what palliative care is about. We have no hospice system in the country. Palliative care is not recognized as a speciality in Lebanon and our services are not reimbursed by insurance. So raising awareness among the community and working on changing the health care system are also within our mandate and we are working hard on those fronts as well.
Is morphine available in Lebanon?
We have oral slow release morphine, injectable morphine, fentanyl patches, and recently sublingual fentanyl was approved for the market. We have no other formulations. And the absence of immediate release oral morphine makes pain management very difficult for us.
But there is no consumption, therefore there is a problem with supply. Doctors are afraid of prescribing opioid analgesics and there is a huge stigma associated with taking them among patients.
Only oncologists and anaesthetists can prescribe, and until recently, opioids could only be prescribed for cancer patients. So non-cancer pain could not be treated adequately. This has now been changed. But the fact that only oncologists and anaesthesiologists can prescribe is very restrictive. There are very few pain specialists in the country to cover non-cancer associate pain.
There is also a process through the Ministry of Health to get the morphine. Pharmacies have to have special licenses to dispense morphine, so the number of pharmacies that can dispense opioids is limited. There are around 30 in the whole country.
The process is: The oncologist gives the patient a special form where he writes the prescription. He gets approval from the Ministry of Health, then the patient or their caregiver takes the booklet to the pharmacy to fill the prescription. Pharmacists can dispense up to one months supply at a time though, which is a recent change and has helped our patients a lot.
At Balsam we depend heavily on the oncologists to prescribe opioid analgesics. We have maintained these relationships and connections and this has worked well for us. But it would be much easier if our own physician could prescribe opioids to our patients.
The concept of palliative care in Lebanon is another problem. We are trying to gain visibility through the media and through other channels.
The Balsam centre was officially registered only two years ago, with three years effective work. We try to advocate as much as possible, but it is a delicate balance. You want to tell people about the service and inform them about their rights to receive palliative care and have their pain controlled. But at the same time, we are concerned about increasing the demand for our services and not being able to meet the need. We are a small team and a young organization.
Discussing death remains taboo in our culture, and the family plays a very important role in making decisions on behalf of a patient. Advance directives are not legally binding in Lebanon. This makes goal-setting and end of life discussions particularly challenging.
Have you heard of the work that is happening elsewhere in the world, such as in India, in community-based palliative care?
Different communities started that way and we think that this is the best way to do it. We started in the community, but there is so much to be done, especially in terms of capacity building.
In our work, we need volunteers, but in Lebanon, the concept of volunteering is not taken seriously. It is not like in the United States where it is incorporated into schools.
The culture isn’t used to volunteering and the commitment that a person should have when volunteering. We are tiptoeing around the idea. We are worried about people’s seriousness, and that the skills that they have are not enough to socially and psychologically help the patient. It would be great if we had that, but we have to take all of this into consideration before we launch a volunteer program.
Can I ask how you protect yourselves when you are going out to visit patients?
Some people might imagine Lebanon as this war zone. It is not a dangerous setting where you are exposed to death at any moment. There are certain times where there is danger, but we are used to that. There is a resilience. You try and play it safe.
It is just very critical. The situation can change at any time. But Lebanese people are just used to it. You know when it is tense, and you avoid going out when it is. When we have to, we work around the security situation by managing patients on the phone, making sure they have adequate supplies of medications and teaching family members to administer medications when necessary.
It seems that in this situation, is is also difficult for information to travel, so how do you get to know about patients? How are they referred to your service?
Anyone can refer patient to us. Usually it is by word of mouth. Physicians will refer their patients. Families that we have taken care of will often refer people they know as well. As long as they are in Beirut or the suburbs of Beirut, we can take them.
Sometimes we provide phone support if we cannot travel to see the patient. Sometimes we will identify a health care provider that is working in the area of the patient, and they will provide care with our support by telephone.
We are hoping to reach more people, but it is going to take time.
Is there anything else that you would like to add before we end?
If at some time we have a patient in an area that is not easy to access, we cannot reach that person for a while. If we are worried about that person and their situation is critical, that is a dilemma.
It is always in our mind. We always have to have a plan B.
ehospice readers can learn more about the Balsam centre and support the vital work that they do by visiting the Balsam centre website.