IAHPC Chair of the Board of Directors, Dr. Lukas Radbruch, reports on IAPCON 2019, held in Kochi, India, in February.
I am sitting on a beach, looking out over the Indian Ocean, and contemplating the last couple of days (I hope my team doesn’t read this; I’ve been telling them it’s all hard work and no fun!).
I have been participating in the 27th Congress of the Indian Association of Palliative Care (IAPCON) in Kochi, in the south of India. The congress has drawn a huge number of participants, though considering the Indian population of more than 1.4 billion, there probably should have been many more palliative care specialists. However, I felt the pioneer spirit and the engagement of participants — and I realized that there are many activities and actions in several states in India, some really worth copying elsewhere.
To show the scope, let me highlight two sessions.
One of the parallel sessions discussed palliative care for vulnerable groups. Two talks discussed the problems with tribal structures and with patients dwelling in slums; the third talk was on palliative care for LGBTQ patients, delivered by a transgender speaker, a doctor who spoke of her efforts to assess the needs of transgender, lesbian, and gay patients, and about overcoming stigma and other barriers in their provision of care. Engaging with the communities of vulnerable groups and working with stakeholders from these communities might be a good way to improve palliative care in other settings and for other vulnerable groups. I will take this idea back home to Germany.
In contrast, the last plenary showed that deep gaps remain for provision of care at the end of life. Drs. Roop Gursahani and Naveen Salins described the work of a task force on end-of-life care set up by the Indian Association for Palliative Care, and the legislation that led to its creation. Whereas a patient has the right to reject treatment, even if this treatment would prolong or even save their life, ending life-sustaining therapies for incapacitated patients in intensive care is a punishable offence.
In India, patients and caregivers have to pay for most of their health care, and the extension of futile therapies in intensive care units leaves many families destitute or in severe financial distress. A Supreme Court ruling last year has allowed for a few exemptions, and the task force is currently seeking a protocol to make use of this new ruling. However, listening to the proposed protocol I doubted whether it would be at all practical, and I thought how lucky I am to live in a country where discontinuation of futile therapies is possible with far fewer legal barriers. As head of the clinical ethics department, I am often involved in decision making in such situations, and quite often we can prevent needless suffering in patients and their family caregivers by discontinuation of futile treatments.
In another session Dr. Lakshmi Koyyalagunta highlighted the opioid crisis in the U.S. and the influence it had on pain guidelines. However, this is mostly a North American problem; health care workers in the audience work in a totally different setting, where patients have problems accessing opioid medications for management of pain and dyspnea. Fortunately, new WHO guidelines on cancer pain management released in February clarify the importance of opioids for initiation and maintenance of cancer pain management, and highlight the need for accessibility, availability, and affordability of opioids. The guidelines recognize that the real global opioid crisis is lack of access in so many parts of the world, not abuse, diversion, and misuse among palliative care patients.
We also had a lot of discussion around the new IAHPC Palliative Care Definition. Today, following the congress, I was very fortunate to be invited to accompany Dr. Chitra Venkateswaran on her home care round. We travelled through rural areas near Kochi, visiting patients with advanced dementia, Parkinson’s, and one with psychosis whose wife suffers from advanced kidney disease. Dr. Chitra’s home care team includes a physician, nurse, psychologist, social worker, volunteer, and the driver. They provide holistic care for these patients at home, and prevent unnecessary hospital admissions.
Seeing these patients and the care they needed, it was absolutely clear that this is a field of palliative care. Yet many palliative care services, whether in India, Germany, or any other country of the world, would exclude such patients. I am very happy that the IAHPC definition includes these groups.
And with that, and feeling grateful for these experiences, I will get my sundowner at the bar. (Note to my team — sometimes a cocktail is just what the doctor ordered!)
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