We have been working here for about 2 weeks now...mostly with the home care teams. They have 3 teams that are based out of the MNJ cancer hospital, with 3 vans. The vans are driven by a driver, and the team consists of a social worker and a nurse (ideally).
Each day the social worker does the case management and decides who needs to be seen that day based on priority or who phoned the night before. The driver helps decide according to geographic area. This city is huge and CROWDED. These teams cover anyone within 40kms of the hospital, and 30kms in this city will take 1-1.5hrs to drive! Because of this, seeing 3-4 patients is a full day often. Sometimes only 2 and sometimes if they're close...5.
Last year they had a total of about 90 patients for 3 teams. They now have 120. And since he conference and the advertising that came with it, there has been a HUGE influx of new referrals that want morphine for pain control. You might think this is drug seeking but its not. Most of these patients have cancer and cannot get morphine anywhere else. Pharmacies do not carry any opioid and they must come to MNJ in order to get any. (Which has only been avail for 7-8yrs now). Doctors are scared or don't have the knowledge to order morphine (indian laws could land you in jail on the suspicion of misuse...without evidence). The cancers we see are often late stage and obviously painful.
This has now led to these teams and the palliative clinic and the hospice to be overwhelmed and inundated with patients. But to hear where they came from 8yrs ago is amazing. The growth has been exponential.
The teams are very knowledgeable of palliative symptom management and the care for these people is astounding. They work 6 days a week from 0930-1730 (ish...in true indian form) often working well past that. Sunday is their only day off (except holidays) and they are paid a modest monthly salary. (No overtime for those late days). On top of that the counselor and nurse carry an after hours phone for 15 days each and answer phone calls 24 hrs a day. So even if they get called during the night, they come to work in the am. There are no evening or night visits however....as women are not safe out after dark.
The nurses will do just about anything in the homes from injections to ascities taps. The counselors do amazing work with pyschosocial issues as well as communicating medications and procedures and end of life processes. (They are incredible people). One cultural issue that I am having trouble with is that most patients are not told their diagnosis let alone prognosis! The norm seems to be all information is communicated to a family member. Therefore, the team must ask/seek permission from the family before discussing this with the patient. And if the family says no, the team (including doctor) must find ways to support the patient without saying anything about the real problem! This has made me so grateful for our culture of autonomy as being paramount.
The nice part is that if a family come to MNJ for morphine and cant afford any medicine, they can get it for free. If the family have money, they will pay for their medicine. The teams are also carrying small amounts of medications that they can give inital doses to the patient/family until they can get to the hospital to pick up more.
In India, chewing tobacco and/or beetlenut is a common practice, and we see a lot of head and neck cancers, with wounds like we rarely see in Canada. The other problem is that most people present for diagnosis very late in the disease process and often have little chance of cure. The team does a lot of teaching of proper wound care but see a lot of problems like infections and maggots related to poor care and poor living conditions. Many people we see live in very simple and poor conditions with little to no education. It proves difficult for teaching families and seeing compliance with care or med administration. And even with good teaching, access to medications and home support, we see patients in pain, not receiving good care. These teams find this very distressing and disheartening. And with the huge growing numbers of patients, they also feel spread very thin.
We have tried to support the teams with education, encouragement, friendship, action, and supplies to try to make work more efficient. A major barrier is lack of resources. The hospital does not even have a proper incinerator to safely dispose of waste (aka. Needles and sharps etc). So the staff had let that compliance slide because there was no facility support. We are trying (as a whole) to be creative in finding solutions to solve some of these basic problems that are within the reality of practice here. For example: our best practice is to never recap a needle to avoid risk of sticks by the needle. However, here, a lot of garbage ends up being rummaged through, often by children. (Cause the hospital doesn't have proper disposal) so the team decided to use 'safer' recapping so that at least the needles that end up in the garbage would be capped and not stick someone! (Thankfully the hospice now pays for safe and proper disposal of wastes. So at least the palliative team is doing it right!)
Its humbling to work with these amazing people and inspiring to brainstorm ways to improve, build, support. This entire program runs on an NGO support because the government doesn't see palliative care as part of basic health care services.
Huge shout out to the Pain relief and Palliative care Society (www.palliativecarepartners.in)
And Two Worlds Cancer Collaboration (www.twoworldscancer.ca)
Please support them if you feel so moved to do so.