Updates from IAHPC Board Members

From Germany by Gian Domenico Borasio, MD, DipPallMed

A course on Neurological Palliative Care in Cuba

Cuba takes great pride in its health care system, which is available free of charge to the whole population. Indeed, life expectancy and infant death rates are almost equal to those in industrialized countries. The Cuban health care system, which is mainly based on community care, appears to be a fertile ground for palliative care. Two academic chairs in Palliative Medicine have already been established in the country, and there is an increasing interest in end-of-life issues, communication of a terminal diagnosis, and symptom control. This became apparent during the first course on “Palliative Care in Neurology” which took place in Havana from April 5-7, 2010, under the auspices of IAHPC. The course was organized by Dr Tatiana Zaldívar Vaillant, Ivonne Martín Hernández MSc, Dr. Gloria Lara Fernández and Angela Puerta de Armas from the Instituto de Neurología y Neurocirugía of the Faculty of Medicine Comandante Manuel Fajardo, Havana City. The course teachers were Dr. Orla Hardiman, a renowned neurologist and expert in neurodegeneration from Trinity College, Dublin, Ireland, and Dr. Gian Domenico Borasio, Chair in Palliative Medicine at the University of Munich, Germany, and a member of the Board of Directors of IAHPC.

Over 75 Cuban health care professionals took part in the course, coming from all areas of palliative care: physicians (both neurologists and palliative care physicians), nurses, social workers, dietitians, pharmacologists, and bioethicists. The topics of the course comprised: principles of palliative care in neurological disorders and in amyotrophic lateral sclerosis; meaning of life and spirituality in palliative care; quality of life in neurological disease; end-of-life decisions: medical and ethical aspects; palliative sedation; physician-assisted suicide and euthanasia. In addition, there were presentations and discussions of difficult cases in neurological end-of-life care.

Like many other countries, Cuban palliative care has so far concentrated almost exclusively on cancer patients. The few existing palliative care units admit almost exclusively patients with oncological disorders. The availability of opioid medication is scarce due to a general shortage of drug supply and tight regulations. Interestingly, subcutaneous drug administration, and even hypodermoclysis (subcutaneous fluid administration) are virtually unheard of, although they could help save resources.

In the discussions during the course, it became apparent that patient-physician communication is a burning issue for many young physicians who have been taught a rather paternalistic attitude where little if any information is offered to the patient. These physicians would like to place more value on patient autonomy. Regarding symptomatic treatment, the unanimous view of the participants was that in Cuba eating has a very high social function and is of psychological importance. This renders patients extremely reluctant to consider nutrition via a percutaneous endoscopic gastrostomy (PEG). The participants hypothesized that artificial home ventilation, if it were available (it isn’t), would be much more easily accepted by the patients than nutrition via PEG.

Bioethical discussions on physician-assisted suicide and euthanasia showed that these topics are just beginning to emerge in the Cuban discussion where suicide appears to be a particular problem in the elderly. Since Cuba’s age pyramid approximates that of industrialized countries, this problem is bound to increase in the future. However, even when faced with difficult situations, Cubans don’t seem to lose their sense of humor - During a case discussion where a German ALS patient had expressed his intention of travelling to Switzerland to obtain assisted suicide (which is legalized in Switzerland, but not in Germany), one of the bioethicists remarked that this case had little relevance for Cubans – they are not allowed to leave the country for pleasure, let alone for dying!

For me personally, giving this course and meeting so many wonderful and warm-hearted colleagues in Cuba was an immense privilege. I look forward to the further development of palliative care within the Cuban health care system, and I am sure that IAHPC will do whatever it can to support it.

Gian Domenico Borasio, MD, DipPallMed

From India by M.R.Rajagopal, MD

I have two pieces of good news to report from India. 

First, the President of India, Mrs Pratibha Patil said the following in a public speech recently.

Cancer patients require proper care. To lessen their unbearable pain, palliative centres should be established. Along with it, training programmes should be conducted for doctors and nurses. Their skills should be developed in such a way, that proper attention can be given to cancer patients, as they require considerable support and care. I hope the doctors, paramedical personnel and management of this hospital will fulfill their responsibilities with full commitment and dedication.

She announced this during the inauguration of a new cancer hospital in Delhi. Is it not wonderful that a head of state expresses these sentiments?

The second piece of news is also exciting. Chittaranjan National Cancer Institute (CNCI) is a premier Regional Cancer Center in Kolkotta in West Bengal, which so far did not have oral morphine. Dr Prabir Chaudhury, a radiotherapist, reports that the institution has now procured it and started using it this week. 

You can read more about both pieces of news at www.palliumindia.org

M.R.Rajagopal, MD
Chairman, Pallium India