The ambivalence and the inability of the relatives to act as proxies in the process of decision-making, and the lack of legal vehicles, are becoming deleterious factors for Albanian emergency and ICU teams. A decision is even more difficult to achieve in long-term care facilities. Nevertheless, the need for a no-CPR policy has been underlined elsewhere for decades [17]. The authors insist that when a DNR policy exists, physicians and other staff are more likely to address these important issues with patients and families.
Among the tricks used to avoid forgoing institutional treatment under desperate conditions, is the formula of 'continuing the medical treatment as an outpatient case', or treating the patient 'at home'. This option is mainly related to a last-minute discharge of the patient in a near-death condition, which is a silent deal between relatives and medical staff. In this way the relatives, apart from ending a senseless hospitalization, avoid making requests for a treatment refusal, faking a following of the treatment in an ambulatory form or in an outpatient basis; hospitals on their side will declare smaller figures of cases with lethal outcome.
Long-term care facilities and hospices are a rarity in Albania, and facing the burden of treating third-age persons or chronic patients who suffer from irreversible, degenerative and strongly disabling conditions is still mainly a duty of general hospitals, or ordinary clinics. This forced role will obviously divert the means at disposal from being used in more fruitful interventions, something unacceptable for an underfunded health system.
Hesitating family members who are unable to act as proxies and to make a decision (for example, through respecting the advance directive or 'amanet' of the patient) aggravate delicate situations such as near-death ones. The situation is even worse when relatives hold ambivalent positions or contradictory ones (i.e. when one relative of the patient demands treatment withdrawal and a second one insists on the continuation of the treatment). Relatives might tend toward overtreatment or undertreatment; it is often a difficult task to find out which position would have been adopted by the patient himself in the case the latter had still some degree of mental competence. Authors suggest, for example, that Caucasian proxies commit overtreatment errors, whereas African American proxies commit undertreatment errors; both extremes can be moderated by advance planning [18].
Actually, a living will in Albanian medical settings may be an inapplicable option, culturally, religiously and legally. Culturally the death-denying position is a prevalent one, but medical ignorance might play an important role as well; in an article describing the situation of an Albanian hospice facility, it is stated that 'only but a few of the patients were aware of the near-death situation and the irreversibility of their medical condition' [19]. This is exacerbated by the uncertainty and the confusion that often surrounds near-death situations, such as those regarding the irreversibility of certain medical conditions.
We interviewed the relatives of 57 recently admitted third-age persons who had been admitted to a neurological facility due to the sudden onset of a comatose situation of different etiologies. More than 95% of the relatives had no idea at all regarding advance desires or directives expressed by the patient prior to the onset of coma. Two relatives who were aware of the reluctance of the old-age patient to be hospitalized nonetheless opted differently under the pressure of other persons. In another study, end-of-life decisions in an Albanian outpatient setting were also not uniformly perceived. For example 27% of the relatives opted for a prolongation of the medical treatment, even if the suffering of the patient was unbearable [20]. False expectations and the lack of information upon the irreversibility of the medical condition are among the possible causes pushing relatives to prolong treatment, in a setting where the medical staff is practically without legal options even to suggest any alternatives.
In the legal field, the number of malpractice suits brought to court in Albania is constantly increasing, and not only here. Authors have pointed out that frequently a medical error is inaccurately considered as a synonym of medical negligence [21]. Under such a pressure, medical staffs will obviously avoid immediate (although logical) decisions, and will unnecessarily hospitalize 'medically senseless' cases (to adopt the Dutch terminology). More and more widely the DOA (death-upon-arrival) record is being replaced by ad hoc medical histories intended to somehow justify the admission of patients in a desperate and irreversible condition to ICUs (Intensive Care Units). The staff of these units ultimately has their say upon stopping the treatment and declaring the death. This inappropriate use of intensive care has been considered (a) unnecessary, (b) unsuccessful, (c) unsafe, (d) unkind and (e) unwise, in a paper summarizing the economic considerations of ICU treatment for hopeless cases. The paper also noted the inhuman nature of false hopes created for the relatives of the patient [22].
This sad itinerary is becoming a practice in Albania, and there is justified fear that the general reticence toward making end-of-life decisions will worsen with time. There are, however, Albanian judges and judicial authors who are considering a revision of perspectives. In a recently published paper a district judge wrote that 'a physician may deliver drugs to a patient with the intent of alleviating pain even though he is aware that such an act will shorten the patient's life span' [23].
The reluctance to change the current legislative position has its explanations. The oppositions toward treatment refusal probably reflect the remnants of a communist philosophy in which the paternalistic state entirely controlled the life of the citizen. The individual was unable to make his own decisions, even on his or her own health. The communist regime even tried extensively to modulate or to efface religious feelings and beliefs, and among them those related to the afterlife and eternity; a wide anticlerical and antireligious campaign was promoted in 1967 with prolific discourses of the Albanian dictator [24]. The campaign culminated in a complete atheistic state for the following 25 years; obviously the overall oppression would have restricted the end-of-life decisions or the way they were legally and socially conceived. The atheistic state deformed the cultural and the social background, but the influence of communism and of the governing Party even in the 'way how life evolves', to quote a Romanian author, was a much larger phenomenon, rather than being an Albanian peculiarity [25].
Strangely enough, the only Albanian Code that mentions and stipulates treatment refusal (as a notion) is the Naval Code. According to article 149 of this Code, the skipper is obliged to report every probable case of treatment refusal [26]. Compared to the overall hesitation concerning treatment refusal within Albanian territory, it seems that such 'slack' tolerance in the Naval Code may be demanded by the circumstances: other rules may apply when navigating in international waters, and when there may be passengers from other nationalities.
As said above, the role confusion and the lack of appropriate terminology in Albanian medical and legal settings are deleterious to the general conception of a 'death in dignity', and toward the application of advance directives for near-death and irreversible conditions. Such a terminological and legal vacuum has been felt elsewhere; in Italy for example, where during the last two decades the number of Albanian immigrants has considerably raised, bi- and multilingual brochures are made available from the social services. In an interesting part of a brochure produced from the social and medical services of the Italian region Emilia-Romagna (the brochure stamped in Albanian language under the title Relationship with the elderly person), an entire paragraph is dedicated to the 'meaning of the death'; all along the lines authors used synonymously the Albanian terms together with the Italian ones (for example, vdekje - morte [death]; humbje - perdita [loss]; dinjitet - dignitá [dignity]), thus underlining the potential conceptual discrepancies between the languages, and the cultures involved [27].
It seems that end-of-life decisions, treatment refusal and DNR requests in Albania are hazardous options. The rationale of their application is influenced by a mixture of religious beliefs, death coping-behaviors and above all, by an immense confusion concerning the role of the proxies as the decision-maker. Some of the options we suggest to improve the overall picture are through raising the public and professional awareness, through adopting more advanced experiences from other countries, and through discussing the issues in appropriate medical and legal forums.
Nevertheless, the Albanian tradition is familiar with the notion of 'amanet', a living will that predominantly deals the property and inheritance issues, but that in some cases will include advance directives regarding the last days of life, or near-death situations. If we have no doubts about the general notion of free will, like other authors who have raised suspicions about its existence [14], then there should be no obstacle to duly registering and honoring an advance directive, formulated by a competent person. The overall reticence, both culturally and legally imposed and sustained, regarding treatment refusal and end-of-life decisions in Albania has to be addressed by medical professionals, in the appropriate instances, and should be duly translated in legislative, regulatory and normative acts that will respond to the dilemmas described above.
