Cultural Issues and Ethical Dilemmas in Palliative and End-of-Life Care in Spain

Juan M. Núñez Olarte, MD, PhD, and D. Gracia Guillén, MD, PhD, Palliative Care Unit at the Hospital General Universitario Gregorio Marañón (JMNO) and the Department of History of Science and Bioethics at the University Complutense (DGG), Madrid, Spain.

Cancer Control. 2001;8(1) 

In This Article

Abstract and Introduction

Background: The concept of palliative care differs according to cultures and traditions. In Spain, palliative care programs have expanded in recent years. The European Commission Research Project in Palliative Care Ethics has sponsored ongoing research to analyze and clarify the conceptual differences in providing palliative care to patients in European countries with diverse cultures and backgrounds.
Methods: The authors present key ethical issues in clinical practice in palliative and end-of-life care in Spain and how these issues are influenced by Spanish culture. They discuss typical characteristics of the Spanish conceptual approach to palliative care, which might be relevant in an even larger Latin palliative care context.
Results: The cultural tradition in Spain influences attitudes toward euthanasia, sedation, the definition of terminality, care in the last 48 hours of life, diagnosis disclosure, and information. The overall care of terminally ill patients with an Hispanic background includes not only the treatment of disease, but also the recognition and respect of their traditions and culture.
Conclusions: The Spanish palliative care movement has shifted its focus from starting new programs to consolidating and expanding the training of the professionals already working in the existing programs. Although there is a general consensus that a new philosophy of care is needed, the interpretation and application of this general philosophy are different in diverse sociocultural contexts.

The expansion of palliative care programs in Spain (as in the rest of Europe) in recent years has been successful in terms of coverage of the target population and opioid consumption. This success, however, has occurred at the expense of deficiencies in the training of professionals and the scarcity of fully comprehensive palliative care systems. A balance has developed with an almost equal distribution of resources between home care and inpatient services, despite a strong tendency in recent years to prioritize domiciliary care in the wake of policies that limit health expenditure. [1]

At this time, 206 palliative care programs are available in Spain, a country with a population of approximately 40 million inhabitants. A total of 1,729 full-time health care professionals (including close to 300 physicians) work in these interdisciplinary teams. The existing programs are caring for 17,484 new terminally ill patients who remain at home and 20,972 hospitalized patients. More than 40% of all cancer deaths occur within palliative care programs. [2]

The development of palliative care in Spain has had distinct peculiarities. The concept of care is not intemporal and universal, but rather it is related with the cultural and historical roots of a society. Caring differs depending on the context. Currently, there is a general consensus in our societies that a new philosophy of caring is needed, underpinning the emergence of "palliative care." However, the interpretation and application of this general philosophy are different in diverse sociocultural contexts. The recent controversy in the United States involving the terms hospice and palliative care highlights the fact that there are distinct organizational models of delivering end-of life care around the world that are influencing the American debate. [3] The differences between the old American "hospice" approach and the Canadian and European "palliative care" approach are summarized in Table 1.

The term culture could be defined as the set of beliefs, knowledge, art, morals, laws, customs, and any other habits or dispositions acquired by a human being as a member of a society. It is outside the scope of this article to give an overview of Spanish culture as a whole, but we will focus on the distinct nature of the bioethics school of thought in Spain compared with that in the United States.

In the canonical scheme of American bioethics, out of the four basic ethical principles (ie, autonomy of the patient, beneficence, nonmaleficence, and justice), autonomy and beneficence receive absolute priority. Beneficence is impossible without autonomy, and thus justice has only a compensatory role. From a European perspective, the basic theoretical underpinning of American bioethics is clearly utilitarian. On the other hand, the Spanish and Continental European tradition relies heavily on European philosophy that has, for most of the time, believed that there are absolute principles in which to ground morals. Therefore, there are absolute obligations prior to the empiric autonomy of the individual, and these may be synthesized in the two basic ethical principles of nonmaleficence and justice. [4]

In Spain and other countries with a Latin cultural background, the palliative care movement has developed some distinctive features perceived not only in the approach to bioethics mentioned earlier, but also in the role played by families of the terminal patients and in the attitude toward information and diagnosis dis-closure that is clearly different from the Northern-European or Anglo-Saxon model. Although religion is no longer the relevant force generating these differences, a certain image of the world (and of the life and death cycle) that could be considered "Catholic" prevails in Spain. A predominantly external locus of control (LOC), a psychological construct by which we attempt to define the views of any given individual about the factors affecting events in his or her life and capability of influencing them, is a key part of this image. When viewed as ideal types, an internal LOC involves a reported perception that life events and circumstances are the result of an individual's own actions, whereas an external LOC includes the perception that life events and circumstances are beyond a person's control. [5] These cultural remnants of previous religious attitudes, which we perceive as influencing health care and palliation, differ from the "Protestant" ways predominant in North America or Northern Europe, where internal LOC is the norm.

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