Dying with Dignity: Is This a Universal Concept?

Abstract

As a doctor, I had many times to break bad news to terminally ill patients and their families in terms of the diagnosis, prognosis, and palliative care options. However, I was never a relative myself in such a situation. I had dealt with bereavement in the past following the death of my father, but this was a sudden and unexpected event. In the case of my mother, the circumstances were very different and for the first time I found myself struggling with the fragility of the human body and the uncertainty that exists when caring for a terminally ill cancer relative. However, what surprised me in my home country was the lack of organized interdisciplinary palliative care in state-funded hospitals, the restricted range of opioid medications available for pain control, and even the acceptance of death as the natural course of severe illness. It seems that in Greek urban places, death and the dying process has become a taboo subject that is best to be avoided. Disclosing the truth about the diagnosis and prognosis, especially to terminally ill patients, is a topic that relatives tend to avoid and the health care professionals do not object to the family’s wishes out of respect. In the presence of the patient, carers tend to focus away from the negative impact of the disease, the possible consequences, and the prospect of death; instead they try to adopt a more positive attitude. This avoidant behaviour may have cultural roots, but with limited scientific research published on this area, it is extremely difficult to provide a plausible explanation or even a justification. Palliative care also seems to be an unfamiliar concept in Greece and in my opinion not well understood among relatives and even health care professionals. Although palliative care was recognized in Greek law, in 2005, there are still very limited governmental palliative care and bereavement services. It is very surprising that there are no officially established inpatient palliative medicine units in state-funded hospitals, no governmental hospices for adults or children, and there are only a small number of home care teams available. Overall, support is provided mainly by charities and volunteers. When compared to the rest of the European Union, Greece is among the least developed countries in terms of palliative care services. This general lack of governmental support for both patients and carers makes the process of dying even more difficult in terms of physical and psychological coping. While I was writing this article, I was very pleased to find out that the availability of palliative medicine services in Greece is improving. There is a Pain Relief and Palliative Care Centre in Aretaieion Hospital of Athens that provides care to outpatients and a small number of inpatients. Although this is the only specialist unit in Greece that is still evolving, it is encouraging to see that steps are being taken towards improving accessibility to palliative and end-of-life medicine. Recently, the country also joined the Access to Opioid Medication in Europe (ATOME) project that aims to identify legal/regulatory barriers and therefore make appropriate recommendations for improvement. In addition, the Hellenic Association for Pain Control and Palliative Care and the Hellenic Society of Palliative and Symptomatic Care for Cancer and non-Cancer Patients are continuing to increase awareness in Greece and their efforts are to be commended. In the case of my mother, we were very privileged as a family to be able to afford inpatient private medical care with comprehensive ongoing symptom control, and during the course of her illness up until the last days before her death she was very comfortable. However, I do wonder from time to time what happens to the many other patients and relatives that are faced with a similar situation in a country where palliative care is a new or even alien concept altogether and therefore it might not be readily available apart from private medical providers. Do these people attend for their loved ones on their own unsupported at home? Do they struggle in state-funded hospitals? I am not sure how these families cope, but for me this was an eye-opening experience in terms of appreciating the importance of palliative care services. Dying with dignity is a fundamental human right that should not be denied or withheld. Hopefully in the future more countries will embrace and actively support the delivery of organized interdisciplinary palliative care within specialist units.