Choosing palliative therapy is not giving up
A conversation Indian Doctors need to start.
My urge to write this article stems from my experience working as a doctor in 2 very different countries: India and Germany. I personally think this article can speak to people across cultural, socio-economic, and ethnic backgrounds, but I cannot presume to understand the challenges faced by doctors in other countries in understanding, explaining, and in some cases advocating for palliative care to terminally ill patients. I come from a family of doctors and have been so infused in the Indian medical community that even considering our doctors being deficient in a way, seems almost blasphemous to me.
And I would have continued to live in this bubble of “we are doing the best we can with limited resources” if I had not moved to a new country and started working here. In some ways, there is a resource problem here as well, only instead of equipment or beds, it is doctors and other medical health professionals. So the excuse of not having enough time to lead difficult conversations in a hospital setting falls a bit short. The bigger problem seems to be the lack of knowledge and awareness in the general public, which makes the task of leading patients and their attendants to make an informed decision look tedious and painstaking. Also, the repeated sensationalizing of negative news about doctors and the general narrative of greed over ethics being prevalent has led the trust to such shaky grounds. That a conversation about any therapy choice seems to be more about the doctor proving his good intentions instead of educating the patients about their options.
And this is why palliation is a course we, as Indians choose when we have run out of funds or after mental and emotional exhaustion of trying everything, doing everything possible to keep prolonging a pain-filled existence bit by bit, minute by minute. Palliative therapy is not seen as offering someone dignity in death, it is seen as Giving Up.
The burden needs to be shared…
When I first started working, I thought, being the harbinger of hope is as important part of the job as it was to diagnose and provide treatment options. I remember being very stoic and “yes, we can do it” with my 80-year-old patient when we first diagnosed her metastasized cancer. Even as a cure was quite clearly out of bounds, we discussed therapy options to prolong life bit by bit. The option of not doing anything was not an option. My consultant tried to nudge me to discuss concentrate on pain relief and supportive options, but here was I, the one who had told this person her digestive symptoms were more than just a small blip in the system… now I am supposed to tell her, that pain relief is the best we can offer, and all the rest will just complicate the last few months of her life with hospital visits? I couldn't accept that. My role as her doctor included possible solutions.
Little did I realize, I am leaving her family to deal with the huge burden of, discussing end-of-life care with her. Instead of holding a conversation with the patient and her family to paint a realistic picture of what the next few months would look like. I let my ideas and emotions about my role as a doctor, subsume, ultimately what was good for the patient and her caregivers. Very rarely do I need to personally call a patient after the discharge has gone through. In this case, I made it a point to call the patient's family to give a test report as, soon as it came. Probably because deep down, I knew, the last discussion about a chemo-port for treatments and whatnot, was redundant with the aggressive nature of her tumor. The family had ultimately decided on the full palliative route and seemed at peace with the decision.
What Mrs.T taught me, a lesson I still struggle to implement (though I have gotten better at it), was that while we cannot change the prognosis of the diagnosis we are giving the patient… we can however help carry the burden of a grave prognosis. Instead of leaving the family or caregivers with the impossible task of making those decisions. Our objective assessment can provide emotional support and allow for a dignified death.
How many times, do we enthusiastically discuss treatment options for diseases and conditions, we know, are ultimately going to be aggressive and fatal. Would it be so remiss, to add, with all those options on the table, a small Asterix of, “this is what going through with the treatment would look like, and we do have an option of making sure you are comfortable… if you feel that this treatment is not for you”. This sentence has helped me bring a lot of clarity in the conversations with our patients, even when the choice leans towards therapy. Having a clear picture of the months to come, helps with the motivation and emotional stress. Honesty, it seems, is the best policy.
