Background

In Spain, there has been a great deal of effort by lawmakers to put Advance Directives (ADs) into practice since 2002. Because powers over health care in Spain have been devolved to the “Autonomous Communities” (the name for Spain’s regions), the management and implementation of ADs have been the responsibility of those Autonomous Communities [1, 2]. However, despite the fact that specific legislation has been enacted on ADs over the last 20 years, at both the national level and in the Autonomous Communities, the number of people who express their wishes about their future care through ADs is very low. In 2020, for example, only 0.6% of the Spanish population had filled out and registered the ADs document [3]. The result of this very low number of people documenting ADs is obvious: their use in and impact on clinical practice are very low.

The emerging use of ADs in Spain has taken place at the same pace as the development of bioethics, a discipline almost unheard of in Spain in the 1990s [4]. Bioethics has promoted the discussion over patients’ rights in Spain, and more specifically the right to exercise patient autonomy. This discussion and the implementation of specific laws governing ADs have led to a significant number of studies about ADs in Spain. To perform the debate on ADs in Spain, we carried out a bibliographic search on ADs in Spain. Those articles that explored the implementation of ADs in Spain (especially the knowledge about them, their prevalence and impact on clinical decisions) were selected. Our study and the article do not follow the methodology of systematic reviews, instead the bibliographic search was used to establish the debate. Some of the articles found have focused on patients (Tables 1, 2, 3) [5, 6], and others on their relatives and representatives (Table 4) [7], while there has also been a significant number of studies exploring the role played by health care professionals (Table 5) [8,9,10,11]. All of them show that, despite the positive attitude towards ADs in Spain, the Spanish people possess insufficient knowledge about them, including both professionals and the public, and their use in clinical practice is very infrequent.

Table 1 Studies on patients with ADs by type of care
Full size table
Table 2 Studies on patients with ADs by pathology
Full size table
Table 3 Profile of patients who complete ADs
Full size table
Table 4 Studies on ADs with patients’ relatives and representatives
Full size table
Table 5 Studies on ADs with health professionals
Full size table

For all of these reasons, ADs can be said to have failed in Spain: because its prevalence is very low, there is a great lack of knowledge about them, ADs have almost no impact on clinical decisions and, therefore, they have not achieved their goal (to honor autonomous patient decisions about future care). This article aims to analyze and discuss the main reasons which have led to the failure of ADs in Spain, with the intention of seeking out strategies to improve their implementation into the future.

Main text

According to the studies carried out in Spain, the main reasons why ADs do not have an impact on clinical practice have been: (1) deficient training of health professionals on the end of life and ADs; (2) the lack of a public process to increase awareness about ADs documents; (3) excessively cumbersome bureaucratic documentation and implementation procedures; (4) the continued existence of a paternalistic medical culture.

Poor training of health care professionals

Health care professionals possess little knowledge about ADs. These studies were mainly carried out among doctors and nurses [12, 13], though there are also studies in which other types of health care professionals took part. Although the knowledge among these professionals generally reaches a level higher than among the general public, most of these professionals do not possess detailed knowledge about ADs (as a concept), the laws currently in force (including their binding nature in decision-making processes) and, above all, how ADs can be put into practice; this ranges from administrative aspects (they are usually unaware of how to consult the corresponding ADs Register) to the manner in which they are supposed to proceed in a specific clinical case [14, 15]. This lack of knowledge exists in all units [16, 17], including those in which patients are often subject to incapacitation (ICU, internal medicine wards, palliative care) [18, 19]. One result of this deficient training among health care professionals is that most have never informed their patients about ADs and do not, in general, know whether the patients in their care have filled out and registered ADs. All of this means that the previously stated wishes of patients expressed through ADs may be violated [20], even though the current Spanish legislation states that it is mandatory to consult whether the incapable patient has registered an AD and, in the case decisions have to be made and the patient do not have sufficient capacity to express their wishes or give informed consent, their wishes/preferences must be fulfilled.

When professionals are asked about their training, they acknowledge that it is lacking in terms of both the end of life (reporting bad news, the palliative care approach, coping with suffering, shared planning of care, grief) and ADs [21]. This is reflected by the fact that very few professionals have prepared their own ADs. Nevertheless, despite their lack of knowledge and training on ADs, most have a positive attitude towards them. They believe that ADs can be useful to both themselves and patients’ relatives, and therefore they are very much in favor of the increasing awareness about ADs and furthering their development [22], as well as improving their training. One statement repeated constanty over the years is that health care professionals demand greater training on ADs.

Lack of a public awareness process

While it is essential for professionals to be trained on dealing with the end of life and, in particular, with ADs, for regular citizens it is essential to create a public process for increasing awareness about ADs documents. By doing this, they can become aware of what ADs are and how they can be documented and implemented. However, no effort has been made to disseminate and educate the public about ADs in Spain. This is reflected in the studies which have been completed; they show that the level of awareness among the public is even lower that that found among health care professionals. Regardless of the field of health care [23,24,25] and pathology [26,27,28,29], patients have proven to possess very little knowledge about ADs [30, 31]. Most have obtained information through the mainstream media, which can lead to confusion. Because this information is not mediated by health professionals, it can cause unfounded fears and prejudices, for instance by associating ADs with euthanasia or with doctors abandoning patients. In fact, in some Autonomous Communities, the person in charge to register the ADs with the citizen is not necessarily a healthcare professional, but a lawyer or administrative staff, as for example in the case of Andalusia.

The lack of a public awareness process means that most of the people who have prepared ADs tend to be individuals who are especially sensitive about end-of-life care because of their clinical or social characteristics, or their ideology. Most of the people who have drafted ADs in Spain [32, 33] are women; aged between 55 and 70 years; with an average to high level of education; independent in performing basic daily activities; and many suffer from a chronic pathology. It has been found that the patients and people who are most knowledgeable about ADs usually suffer from some chronic pathology. Chronic disorders cause people to reflect on the end of life, including both the patients themselves and those around them, and therefore the relatives of patients with chronic pathologies also possess greater knowledge about ADs. The same is true for critically ill patients: patients who have been admitted to the intensive care unit are more likely to participate in decision-making and to draft ADs, and having a family member or friend admitted to intensive care spurs reflection on ADs. It has also been found that many of the individuals who have registered an ADs document had a family member who had previously done so [34], that a significant number are the primary caretakers of patients at the end of life (usually women) and that others are activists in some private entity with clear wishes regarding the end of life, such as Jehovah’s Witnesses or advocates for the right to decide at the end of life.

After being given information, patients show a positive attitude towards ADs in general [35] and consider it important to offer everyone the chance to prepare them [36], as well as the need to include the document in the clinical record [37]. They believe that ADs would improve the relationship with health care professionals and give them peace of mind regarding future decisions made with them. It must not be forgotten that the main reasons for drafting ADs are to plan what interventions they do not want to have performed (limiting treatments such as life support) and to be able to receive drugs that relieve pain for fear of dying under poor conditions. In one study of dialysis patients, fewer than 15% had expressed their wishes about whether or not to continue with dialysis to their patient representative, and those who had done so had left no documented confirmation. After being informed about ADs, more than 6 out of 10 were willing to draft and register them [38].

Knowing that adequate awareness about the document has not been raised, patient believe that the key to its implementation is education for both them and health care professionals. There is now a greater culture of shared decision-making at the end of life, but much has yet to be done. There are still prejudices and taboos about how to face death [39], which makes it difficult to promote an open dialogue on the end of life among the ill, their relatives and health care professionals, thus affecting the completion of ADs.

There are also studies on patients’ relatives and representatives [40, 41], above all in intensive care units and emergency wards. They, too, show a great lack of knowledge about ADs documents and patients’ wishes, but show a positive attitude towards receiving information. In general, patient representatives (mostly women, aged 50–70 years, and usually spouses or daughters) believe that ADs are easy to use and practical, and that they give peace of mind to patients, as well as being helpful for receiving more respectful care when facing death, reaching consensus on decisions, honoring the decisions made by patients, serving to limit and prevent unwanted treatments, as well as preventing and shortening unnecessary suffering [42]. The opinion of the representatives that ADs are easy to use seems contradictory to the patients and, especially, health care professionals’ opinion. But it must be taken into account that the representatives do not carry out the AD registration process or their consultation (task of professionals). They are only consulted when necessary. Patient representatives also believe that greater efforts should be made to increase awareness about ADs.

Excessively cumbersome bureaucratic procedure

The process for documentating and executing ADs in Spain is not easy for health care professionals or patients either, and that makes it difficult to make their use more widespread [43]. Usually, although it depends on the Autonomous Communities, the document cannot be accessed through the patient’s clinical record, and in order to consult the corresponding ADs Register, health care professionals must possess a set of personal passwords which expire periodically. As a result, if a case arises in which they must consult ADs, it is very likely that a doctor will not know how to consult the ADs Register (as stated above, due to a lack of training), and if they do know how to, their passwords are very likely to have expired. This has taken, for instance, in the Autonomous Community of Madrid. It is a cumbersome procedure which is not at all user-friendly for health care professionals.

In several studies, these professionals have pointed out that access to the ADs document should be made easier and that the ADs on record should be accessible through the patient’s clinical record. To encourage the use of ADs, it is important that the way in which they are documented and the system for consulting the ADs Register must be made simpler, with access provided through the patient’s clinical history, as is the case in Catalonia.

Another problem related to the bureaucratic procedure is that patients usually have to do ADs by themselves, without the help of a healthcare professional, therefore it is more difficult that patients register ADs. Furthermore, as previously noted, in some ADs registries, the person in charge is a lawyer or and administrative, but not a healthcare professional, therefore, many of the decisions can not be discussed appropriately with the person/patient.

In order to make the management and implementation of ADs easier to perform, professionals and patients believe that a priority role should be placed on primary care [44, 45]. Primary care professionals are more familiar with patients and can undertake dialogue with them in a better way in order to determine their health care priorities [46]. Patients think that doctors should inform them about ADs, especially their family physician. However, during acute processes or during specialist visits, it may also be appropriate to begin a dialogue about planning health care decisions and ADs. Another proposal of great interest for improving the way in which ADs work is to identify groups of patients on whom a priority should be placed, targeting those with terminal and chronic illnesses and the elderly [47]. Strategies for increased awareness, documentation and execution of ADs should begin with them.

Paternalistic Spanish medical culture

Historically, Spanish and, in general, Mediterranean medicine has been characterized as communitarian and paternalistic. The patient’s cultural community (including their family and social environment) have been very present in the decision-making process, forming the basis of the doctor’s authority [48, 49]. This structure has existed in opposition to greater liberalism in the English-speaking world and Northern Europe, where patient autonomy in decision-making is more prevalent [50]. One of the aspects of bioethics with the greatest impact on Spanish medicine has been the introduction of respect for patient autonomy. ADs are a reflection of respect for patient autonomy (expressed in advance), and despite the fact that Spanish laws have consolidated this respect, studies carried out in Spain show that there are still remnants of medical paternalism among both health care professionals and the public.

One piece of data which shows how paternalism is still present in Spanish medicine, above all within the realm of hospitalization, is that most patients believe that having prepared ADs will not change the doctor’s attitude or decision [51, 52]. A study carried out in the field of psychiatry shows that there is a certain rejection of patient empowerment, with a latent paternalism persisting in decision-making and families playing a paradoxical role [53]. In a study of patient representatives carried out at Catalonia’s ADs Register [42], two out of three surveyed stated that the health care team read the ADs and usually believed that the patient’s will was honored, but only 59% said that the health care professionals asked for their opinion as patient representatives. It cannot be ignored that the main difficulty which this reflects is a potential mismatch between the health care professional’s criteria and the wishes expressed in the document.

As for health care professionals, they sometimes fail to facilitate patients’ decision-making either [54], which may be an example of what we have referred to as “latent paternalism.” For different reasons (lack of knowledge or time, failure to bear in mind that completing ADs is part of their work) [55], doctors almost never provide information on ADs and seldom help patients complete them [56]. Also among the problems which ADs [47] can create are discrepancies between the patient’s instructions and the opinion of family members or doctors, which may not be in line with proper clinical practice and may pave the way towards legal action. All of the aforementioned can make doctors feel defensive, as they are usually the ones who prefer to guide decision-making among patients.

Last of all, it should be pointed out that many patients trust their families and doctors more than they trust documents, a factor that cannot be blamed on medical paternalism alone. It has been found that patients usually prefer human relations to documents, which leads to the need to establish better-flowing communication and shared planning of decisions [57], instead of focusing decision-making on a mere document [58].

Conclusions

Although there has been a specific legislative framework governing ADs in Spain for 20 years, and bioethics has developed in recent decades, the implementation of ADs has failed. ADs have not fulfilled their purpose, because they have hardly any impact on clinical decisions, and therefore they have not been a useful tool to help honor patients’ autonomous decisions about their future care. Studies indicate that there are four reasons for this failure: (1) the lack of proper training for health care professionals on the end of life and ADs, in terms of the conceptual framework, existing legislation and legal implementation; (2) lack of a public process to increase awareness about ADs documents, which has led to a great lack of knowledge about ADs among patients, and thus only certain groups especially sensitive to end-of-life issues (chronic and terminally ill patients, as well as their families, caregivers and certain ideological groups) are fully aware of them and register ADs properly; (3) excessively cumbersome bureaucratic documentation and implementation procedures, which are a barrier for patients to prepare them and for professionals to consult them when necessary; (4) the continued existence of a paternalistic medical culture, both among patients and health care professionals, which makes it difficult to reach shared decisions with patients and their relatives.

Despite the difficulties that have been identified, it has also been observed that health care professionals and the Spanish public have a very positive view of ADs. They believe that ADs can be very useful, insisting upon the importance of increasing awareness about ADs and very willing to receive information. Due to all of the above, once the problems that have kept ADs from becoming successful are identified, strategies must be developed to help further their implementation into the future. These strategies should include the development of Advance Care Planning (ACP). ACP is a structured approach that allows patients, relatives and physicians to discuss end-of-life decisions [59]. ACP enables individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate. The current restriction of ADs to the writing and signing of a document—in contrast to the discussion and review involved in ACP—has extensive limitations, such as a general lack of public trust in the documents, as evidenced by low completion rates. A new approach, involving the implementation of ACP, may be able to overcome some of these limitations.