Unfortunately in Bangladesh, there is very limited access to hospices, and there are no hospice facilities outside of Dhaka, so home is really the only option for families for most families who I work with. Unfortunately there is also no home care available. Given these limitations, I have been working to develop a palliative care discharge kit which gives families simple instructions for what to do as their child nears the end of his or her life.
The kit contains simple instructions in Bengali about which medications to give if the child has pain or other symptoms. Due to the fact that 75% of the parents are illiterate, the medications are also colour coded. The kit contains about 10 doses of these emergency medications for pain and other symptoms. Having morphine in the kits is especially important as it is very difficult for families to get morphine. (It is also very difficult for me to get it for the kits, but that is another story).
The kit also contains instructions in Bengali which are intended for a local doctor. I explain to the family that when they reach their home, they should try to find a local physician who can provide care in their community. The instructions for the local doctor explain the child's condition, why the medications have been prescribed and how to contact myself or Dr. Rumana should the local doctor have any questions.
You are probably thinking that this kit is not a very complicated idea, but this is Bangladesh, so it has taken 4 months to develop.
Here are a few examples of issues that came up along the way:
1. Deciding which medications to include was difficult. There are similar kits used in other countries, but they are kept in the home and intended to be used by a trained palliative home care nurse under the instructions of a doctor. These kits usually contain many medications each intended to treat a specific symptom, but since my kit depends on parents recognizing the child's symptom and giving the correct medication it had to be much simpler. It wasn't possible for parents to decide between too many medications without getting confused. So the kit ended up having only 3 'emergency' medications:
-tylenol for fever or mild pain
-morphine for moderate or severe pain
-midazolam for anxiety, agitation, sleeplessness, restlessness or basically any other symptom
I seems almost too basic, but my experience is that with any more medications the parents get very confused about which one to give when.
2. Local doctor instructions: Initially these instructions stated that the child could not be cured, but feedback from physicians at my hospital revealed that if the local doctor was told this, then he or she would refuse to see the patient and simply tell them to go home to die. So the local doctor instructions no longer mention this fact. It seems counter-intuitive to me; as a doctor I would appreciate having all the information about my patient. Often when the local doctor hears that the child has cancer, they will say that the problem is too complex and the family must take the child back to Dhaka to be seen by the specialists at my hospital. I am not sure how exactly to address this issue short writing "don't send the patient back to Dhaka".
Follow up plans: After distributing the first 20 kits, I plan to do a follow up telephone survey to see how the kits were used. Which medications did the family use? Did they find a local doctor to help out? Were the medications effective for the child's symptoms?
Here are some photographs of the newly assembled kits.
As far as I know, no one has done this is a developing country before, so I am keen to see how it works. This idea was developed working very closely with a local palliative care physician, Dr. Rumana and reviewed with other local physicians.
|The first kit and the instructions!|
|Kit with instructions|