Identifying ethical and legal issues in elder care

Abstract

Background:

As a non–European Union member state, Albania is increasingly orienting itself on Western models regarding human rights, patient rights, and legal regulations for healthcare. Due to its limited fiscal and legal power, enforcing legal and ethical regulations poses a major problem.

Aim:

The aim of this study is to investigate nurse’s knowledge and experiences regarding ethical and legal issues in Albanian elder care in state-funded and privately run institutions.

Research design:

The study was conducted using an inductive and qualitative design, utilizing a focused ethnographic approach, based on Roper and Shapira’s framework.

Method:

Data were collected between June 2017 and September 2018 using participant observation, field notes, and semi-structured interviews with 15 nurses in seven different elder care institutions. In total, 100 h of observation and 15 interviews were performed. Data analysis was based on Mayring’s qualitative content analysis.

Ethical consideration:

The approval for the study was obtained from UMIT—The Health and Life Sciences University, Austria.

Findings:

The findings of the study fell into the following main categories: “Everyday care issues,” “End-of-life issues,” “Legal issues,” and “Ethical-legal education and conflicts.”

Discussion:

The participants reported many ethical and legal issues when describing their everyday challenges and displayed a strong lack of ethical and legal education. Despite a wide spectrum in the quality of care between private and state-funded nursing homes, older people mostly do not know their own diagnosis.

Conclusion:

This study indicates that further ethical and legal education is needed. Furthermore, nurses need to be better prepared for ethical conflicts with families, as strengthening patient rights could come into conflict with traditional rights of the Albanian family.

Keywords

Albania ethical issues legal issues focused ethnography elder care nursing care

Introduction

People worldwide are living longer and, as a result, the world’s population is aging. Compared to the rest of the world, Europe has the highest proportion of older population and it is projected that, by 2050, one in four people will be aged 65 or older.¹

Albania is also experiencing the effects of population aging. Some researchers estimate that by 2060, half of the Albanian population will be aged 50 years and older.¹ Currently, the healthcare system in Albania is suffering the effects of attrition in its healthcare workers, lack of training in elder treatment, and the absence of long-term nursing home facilities and palliative care.²

Furthermore, Albanian care institutions differ greatly from Western European ones. There are no traditional long-term nursing home facilities within the Albanian territory³; however, there are 39 residential homes for older people in Albania.

Despite the existing infrastructure, the State Social Service in Tirana reports that only 50% of all applicants have been accommodated in these residential homes.^4,5 Around 62% of all Albanian municipalities are not offering any kind of services for older people.^5,6

There is disparity in quality of care evident between residents of state-funded and private nursing homes. In addition, the mandatory health insurance system is underfunded by the government, and results in high out-of-pocket expenses,^5,6 which many elders cannot afford.⁷ State caring institutes are underfunded, and nurses sometimes are forced to improvise. In private nursing homes, which few can afford, conditions more closely resemble Western European models.

Under the previous regime, healthcare had been free, although not always adequate, and was rigorously monitored by the government.⁸ The residuals of communism are visible in the values and attitudes of healthcare workers, patients, and legislators, in which living wills, advanced directives, or personal freedom regarding end-of-life care were largely nonexistent.⁸ Doctors commonly refrained from discussing the patient’s ailments with them, making medical decisions without the patient’s consideration. The medical system and legislation were dominated by a paternalistic attitude toward medicine and medical decisions. Even today, this limits the patient’s choices in treatment and at the end of life.⁹

As Albania increases new legal regulations in anticipation of European Union (EU) membership, nurses are held to heightened ethical standards, for example, the International Council of Nurses Code of Ethics¹⁰ and the “Kodi Etik-Deontologjik.”¹¹ Enforcing these legal and ethical regulations will be a future challenge for the healthcare sector of Albania.

Methods

Aim

The aim of this study was to investigate nurse’s knowledge and experiences regarding ethical and legal issues in Albanian elder care in state-funded and privately run institutions.

Design

To explore nurses’ knowledge and experiences with ethical and legal issues in elder care, an inductive and qualitative design, utilizing a focused ethnographic approach, based on Roper and Shapira’s (2000) framework, was chosen.¹² Focused ethnography is often used in nursing research, as it is centered on a specific context among a small group and can be done in a shorter time than traditional ethnographies.^13–15

Participants and recruitment

Because there are no traditional long-term-care facilities for older people in Albania, other settings that offer elder care were included (see Table 1).

Table 1.

Frequency of data collection.

Institution	Hours of participant observation	Interviews done
Public NH 1	30	5
Public NH 2	8	1
Public NH 3	11	1
Private NH 1	11	2
Private NH 2	12	2
Palliative care center 1	20	3
Palliative care center 2	8	1
Total	100 h	15 interviews

In five out of seven institutions, there were residents of different age groups, whereas only two private nursing homes consisted exclusively of residents older than 60. Access was gained by contacting each institution’s manager, who also helped in recruiting nurse participants. In total, 15 nurses participated in observations and interviews, recruited through purposive sampling based on their potential to inform the study about their knowledge and experiences.^12,14,16

Data collection

Data collection was conducted from June 2017 to September 2018, using participant observation, field notes, and semi-structured interviews.^12,17

The first author who used to work as a nurse wore nursing clothes and carried a researcher shield during the observations, to participate in daily activities related to nursing care. Being a native speaker of Albanian and familiar with the customs in Albanian nursing homes, she could observe the environment with minimal disruption. Participant observation occurred at all times of the day. The duration of observations varied (see Table 1) from 8 to 30 h. The observations focused on nurses’ workday, organizational structure, practical tasks, activities, and communication. Observations were recorded during breaks as field notes that encompassed actual situations, the observer’s’ impression of what happened, and the initial interpretation of the situations. Overall, the researcher strove to be discreet and not to interfere when observing, facilitaded by cultural and professional familiarity with the setting.^12,13

After observation, the first and the second authors continued with semi-structured interviews, because they provide rich data on sensitive topics such as ethical and legal issues, which are not usually observed on a daily basis.^13,17,18 The interview guide was originally developed based on previous literature^19,20 and pilot tested, but not provided to participants prior to the interviews. Nurses were asked about their workday, their knowledge of ethical and legal issues, and the issues they face while caring for older people. Interviews were conducted in the workplace or in cafes outside of working hours. The interviews lasted 30–60 min, were audiotaped, transcribed verbatim, and translated into English. All participants declined to review their own transcripts. Demographic data including age, gender, education level, years of experience, and the type of institution in which they worked were also collected (see Figure 1). Data collection continued until saturation.

Figure 1.

Overview of participants.

Analysis

While an ethnographic approach was chosen to gather the data in the form of observations, field notes, and semi-structured interviews, the analysis of the recorded data was supported by Qualitative Content Analysis according to Mayring (2014) as a methodical basis.^21,22 Further work on qualitative analysis was considered in order to achieve a multifaceted view of this method,^23–25 and implemented with the qualitative data analysis software MAXQDA2020.²⁶

Following the concrete procedural model for inductive category formation,²¹ all the material, including observations, field notes, and interviews, was worked through at least three times. In this process, data-generated (inductive) categories were created to structure the material with recurring topics (see Figure 2).

Figure 2.

Data generation process.

To create the category system, the coded segments were first paraphrased and coded and in subsequent steps subsumed into subcategories and categories (see Figure 2). In this way, the level of abstraction was slowly increased to create a code system that fits both the observations made in the field and the interviews.

This allowed comparison of the different institutions to each other but also to contrast observed and reported issues. The first and the third authors performed the final coding separately and minor disagreements were resolved within the team.

Ethical considerations

The Research Committee for Scientific and Ethical Questions (RCSEQ) of the UMIT—Private University for Health Sciences, Medical Informatics and Technology in Hall in Tyrol, Austria, approved the proposal. The study was conducted in accordance with the principles of Helsinki Declaration²⁷ and was approved by each institution’s manager. The main researcher explained process of observations and research goals to participants. Written informed consent was obtained, prior to inclusion, from participants in observations and interviews. Data were anonymized by removing names, locations, and changing details. Field notes, interview-transcripts, and audiotapes were kept in locked files.

Rigor

Credibility was established by discussing observational data with the participants, and the dependability was maintained by triangulating sources (obtaining nurses’ experiences in different institutions) with methods (observation, field notes, interviews) to corroborate consistencies across data.^13,14 Confirmability of the findings was ensured through peer debriefing and data collection from key informants such as nurses.¹² As the main researcher had working experience in the study setting, her experience helped to improve the validity of the study. She reflected with the emic-etic spectrum in mind, moving sometimes in the culture of the setting to acquire better understanding about it, while sometimes acting as a researcher in order to obtain a general understanding.^12,13

Results

The results are based on observations and field notes from seven institutions and the analysis of 15 interviews of nurses working in Albania, nine women and six men (see Figure 1). Because there are no traditional long-term-care facilities for older people in Albania, the nurses came from four different types of institutions: palliative daily care centers, public nursing homes, and private residential nursing homes.

Observations and field notes

Overall, strong differences in the quality of care regarding cleanness, equipment, and safety could be observed between the three institutions types. The private nursing homes most strongly resemble Western European models. However, they are scarce and expensive. The family often plays a key role in financing the stay of the older people resulting in frequent conflicts between staff and the families, as they take a prominent role in decision-making on the older people’s behalf.

The state-funded institutions are the most common nursing homes in Albania. The institutions visited lack funding and keep a mix of young and old residents, people with mental health problems, and mentally healthy persons. Physical and verbal violence is a major problem in these institutions. Older people are often brought against their will and sometimes abandoned by their families who uninvolved them; instead, staff takes over the decision-making on the older people’s behalf.

In the palliative daily care institutions, conflicts regarding palliative care are most frequent. Here, personnel was observed struggling between following the wishes of the family or the resident. Staff are asked not to tell the patients their diagnosis. Families are highly involved, as they often bring the patients to their therapy.

Everyday care issues

In everyday care, contrasts between the different institution types become clearly visible, as these practices can easily be accessed and observed. In the private nursing homes, older people often come voluntarily or by the family’s wish and are met with well-equipped and clean institutions. Here, sometimes residents are even turned away because the institution is filled. In state-run care homes, by contrast, admission can be a result of neglect or force. Conditions are often poor, institutions are unclean, and standards of hygiene and wishes in nutrition cannot be fulfilled due to lack of funding and staff.

Bathing and lack of staff issues

When the everyday routine is observed and discussed, it becomes evident that the state-funded institutions most heavily suffer from a lack of staff. In general, the residents more frequently must take care of themselves, and the danger of neglect is more imminent. The examples given in Table 2 clearly shows a contrast between the agreed standard (regular bathing and bathing upon request) and the actual state in daily routines within the same state-funded institution.

Table 2.

Category: Everyday care issues.

Subcategory	Interview example	Fieldnote example
Bathing and lack of staff issues	The staff members aren’t sufficient. In fact, there’s a definite time to have a bath. It’s once a week. However, if a person needs to have a bath, in case of an emergency, then we should bath him despite the definite time. (IN11, Pos. 13)	One of the residents who was in the yard goes inside and asks one of the nurses if she can help her take a shower. The nurse responds: “Today we can’t do that, we have too much work, therefore your shower day is Friday.” The resident lowers her head and leaves. (Public_NH 01, Pos. 11)
Providing nutrition	They also eat at a defined time, but if a patient can’t feed himself, then a staff member feeds him. (IN05, Pos. 69)	It is lunchtime, everyone is gathered at the dining room, where one of the nurse assistants is serving rice with chicken meat, salad, and yogurt. Even though it’s very hot, all of the residents are eating, some of them are even having two portions… (Palliative_Care_Center 01, Pos. 8)
Providing medication	We try to find ways to provide them with the respective medicaments without their approval. For example, we might supply the medicament in their food. (IN 15, Pos. 59)	One of the residents starts to feel bad, his blood pressure hits 80/40. The nurse and the director of the house lay him down and infuse him with an intravenous perfusion. After that, they call the ambulance that takes him directly to the hospital. I asked the nurse and the director if the infused intravenous perfusion, which was Na-Cl, was a recommendation of the doctor, but the nurse told me that they do it without the recommendation of a doctor, due to the fact that doctors take too long to arrive at the nursing house. (Private_NH 01, Pos. 7)
Emotional support and intention to treat residents equally	We treat them all equally. We have different social classes such as prisoners or teachers, but they all behave well. Perhaps, an x prisoner has more knowledge about life and he really appreciate us. In general, we get along with them, and they always respect us. On the other hand, there are few elders who offend and treat us as ordinary employees. (IN14, Pos. 45)	Nurse greets Monda, gives her a hug and asks her: “How are you doing Monda, has your niece already showed up? I guess you have baked your special cake for her”…(they both laugh). (Palliative_Care_Center 01, Pos. 4)

Providing nutrition

Similarly, in providing nutrition, the staff tries to consider the tastes, wishes, and allergies of the residents, but for public nursing homes in particular, financial resources are so limited that even desired meat dishes cannot be provided. In contrast, private nursing homes provide plenty of meat dishes and allow for two portions (see Table 2).

The decision not to eat is commonly respected in all institutions, although patients are encouraged to eat regularly. Sometimes nurses are forced to feed the residents because they are urged to respect the family members’ wishes and avoid accusations of neglect.

Providing medication

When providing medication, the nurses largely acknowledge the decision-making authority of the doctor in the interview but show a strong level of autonomy during observation regardless of the type of institution. For example, it was recorded that nurses applied intravenous perfusions without a doctor (see Table 2).

This high level of autonomy can take drastic forms of forced treatment in state-funded institutions when painkillers are used as self-defense against psychiatric patients or are applied to calm residents for convenience. Furthermore, in several institutions, the medication is sometimes mixed into the food to avoid the patient’s dissent (see Table 2).

Emotional support and intention to treat residents equally

Besides these difficulties, the interviewees stress two aspects of their everyday care as important: the emotional support they provide to the residents and the intention to treat all equally. For example, one nurse highlights that from ex-prisoners to teachers, all are treated equally (see Table 2).

In nurses’ views, listening serves an important role of building trust and welcoming residents to the institution. Interestingly, listening is also described as a skill learned during training abroad. Nurses report that they have learned to listen, instead of talking to themselves in their training.

End-of-life issues

Not telling the truth to the residents

The interviewees were reluctant to talk about end-of-life issues, as talking about death is a cultural taboo in Albania. In this, privately and state-funded institutions differ only to a small degree, while in the palliative daily centers, these questions appear more pressing. Across all types of institutions, it is common practice not to tell residents their diagnosis, as they are expected to “live normally until the last moment.” This causes major conflicts not only with patients’ rights and legal requirements, but also ethical conflicts for the nurses. Should they follow the traditional wishes of the family or the legal requirements? Commonly, the family is given priority, and the older people just accept what is told to them, what the family feels is acceptable (see Table 3).

Table 3.

Category: End-of-life issues.

Subcategory	Interview example	Fieldnote example
Not telling the truth to the residents	We discuss everything only with the members of the family. The elderly receive information from their families because we cannot tell them the truth. They just accept what we tell them, and do not ask questions. So, we provide patients with the information their families want them to know. (IN02, Pos. 21)	After walking out of the patient’s room, I ask the nurse: “Why don’t you respect the desire of the patient, why isn’t she able to decide on her own about the therapy?” “We cannot decide, because the son of the patient takes the decision. Until some days ago Monda had no idea that she was receiving palliative care because she is terminally ill and is soon going to die. Some days ago, her son told her the truth, after she told him she knew she was going to die.” (Palliative_Care_Center 01, Pos. 11)
Decision-making issues	She told me that she knew she was dying, and she just wanted to rest. I told her that was going to be the last attempt. I first inserted the intravenous cannula, but then I removed it to convince her son that I could not find the vein. In fact, I could have found any vein, but I didn’t want to torture the patient anymore. I told him that his mother was at the end of her life, and the only thing he could do was to stay close to her. That night, the patient died. Sometimes I must make up something so as not to create conflicts with family members or patients. So, I took my blame for not finding a vein and showed myself unskilled so I wouldn’t cause pain to the patient. (IN02, Pos. 49)

Decision-making issues

In general, family plays a key role in decision-making in palliative care and is considered the legal representative regardless of their official status or the awareness of the resident. Final decisions are formally referred to the doctor, yet they involve the family. If the family is not available, staff takes over the decision-making on behalf of the residents.

The residents’ opinion is commonly disregarded. Even if older people refuse food or treatment, or explicitly ask for medication to end their life, nurses almost never take their statements seriously.

In fact, many nurses show a high level of autonomy in decision-making. In one instance, a nurse pretended not to find a vein because she did not agree with continuing the palliative treatment (see Table 3). This high level of autonomy, self-confidence paired with a lack of staff and education, can be highly dangerous and requires educational improvements and sufficient staff.

Similarly, during the visits, the nurses in palliative care institutions reported that they sometimes follow the wishes of the patient, if they want to refuse treatment (see Table 3). Yet in cases of conflict, they always yield to the family’s wishes.

Legal issues

Limited understanding of legal regulations and rights

Legal issues are difficult to observe during the visit of institutions as they rarely happen daily and even less so in front of outsiders; therefore, the interviewees were needed to gain information. However, when prompted to talk about legal issues, the interviewees responded sparingly and vaguely, which shows their limited formal understanding. Even though legal issues come up throughout other parts of the interview, they are not easily conceptualized as such. The nurses frequently provided their own understanding of patient’s rights (see Table 4).

Table 4.

Category: Legal issues.

Subcategory	Interview example	Fieldnote example
Limited understanding of legal regulations and rights	At the moment, I can’t mention them precisely, though nobody can infringe on the elders’ and the personnel’s rights. I remember that if the nurse tells an elder to do something because it’s for his or the community’s best, the elder must obey the nurse. (IN11, Pos. 148–149)
Legal representative issues	Yes of course they do. The family members are legal representatives. If they do not have children, they do have nieces and so on. We can’t keep residents who do not have a legal representative. We always communicate with their representatives about their medicines and condition. (IN06, Pos. 17)	–
Violation of informed consent, in order to keep older people naïve about their conditions	There are cases when the doctor, nurses, or the physiotherapist organize plans regarding the elders’ condition in collaboration with the families. The elders might not have knowledge about this, but we must to have the approval of their family members. (IN15, Pos. 41)	Every decision regarding therapy or anything else isn’t taken by the patient himself but by their families. Patients are denied their right of receiving true information regarding the diagnosis, the treatment, etc. They are denied the right of decision-taking. (Palliative_Care_Center 02, Pos. 19)
Documentation process	The official document, including “Informed Consent” is part of any palliative report card, but it has never been used, considering that the patient is not informed, and we cannot do false things. The patient must be well-informed of what he owns and what we serve him. The patient must sign with his complete consciousness. (IN02, Pos. 23)	It is 7:20 a.m., and the nurses are doing the change of shifts. They gather the proper paperwork and prepare the morning therapy. (Private_NH 02, Pos. 8)
Advanced directives are given orally	No, there is no official document for them to sign. Yet, either the patient or the member of the family can decide verbally. (IN01, Pos. 41)	–
Freedom of movement and isolation	In fact, isolation was legal in Albania. It’s not that we used to isolate them in “iron rooms.” Isolation meant that we had to stop them go out. Now, the laws have changed, and we are not allowed to isolate them anymore, except of extreme cases. (IN15, Pos. 81)	Sometimes nurses are forced to isolate agitated residents in rooms and give them sedatives. Some employees treat residents a little harshly. (Public_NH 02, Pos. 18)

Commonly, such responses relate to preserving patients’ dignity, preventing neglect or abuse, or the patients’ right to defend themselves and complain.

Formal knowledge about older peoples’ and patients’ rights was largely absent. When asked about their own ethical standards or rules, they often reported individual orders of the director or doctor. The core of these subjective guidelines is made up by the nurse’s duty to provide care and prevent abuse. Also, their responsibility and authority over the residents are stressed. Respecting privacy and good communication with the patient and their family are also mentioned as their personal ideals.

Legal representative issues

When asked who the legal representative of the resident is, the nurses commonly give tradition priority over law. In the eyes of the interviewees, family is the legal representatives as soon as the older people are admitted to an institution. Even more so, the opinions and actions of the patient’s family are given priority over the patient themselves. Only in cases where no family members are available, caring institutions take over as legal representatives, which is more likely in state-funded nursing homes.

Violation of informed consent, to keep older people naïve about their conditions

Informed consent is rarely ensured, as the patients do not know their own diagnosis. Many nurses report that the diagnosis of patients is regarded as confidential and is only to be discussed with the family or among the staff, but not with the old person (see Table 4).

Documentation process

During the researcher’s stay at the institutions, maintaining documentation, especially at the beginning and end of a shift, could be observed in all institutions (see Table 4). Although the completeness and rigor of the documentation process may vary, the staff does recognize their importance (see Table 4).

Advanced directives are given orally

Advanced directives, however, are still predominantly given orally (see Table 4). This includes decisions about the continuation of care, last rites, or even testaments. Legal testaments are only created by wish of the family in cases of inheritance and are more frequent in private nursing homes.

Freedom of movement and isolation

Despite being excluded from the decision-making process, limitations about the freedom of movement are less serious. A wide spectrum between the state institutions and the residents of private nursing homes can be observed. In many centers, a guard restricts access to and exit from the institutions, still when the residents are mentally and physically able, they are frequently allowed to go out in all institutions.

Serious infringements on the freedom of movement can mainly be observed at the state institutions when patients become a danger for others or themselves and are sometimes isolated (see Table 4). Nurses report that they are forbidden to lock the doors; however, during the visit at a public nursing home, isolated older patients were noted by the researcher (see Table 4).

Ethical-legal education and conflicts

Lack of ethical and legal education

Most of the interviewees reported a lack of ethical and legal education (see Table 5). The observations made at the institutions confirm this lack of training.

Table 5.

Category: Ethical-legal education and conflicts.

Subcategory	Interview example	Fieldnote example
Lack of ethical and legal education	We haven’t had trainings, but we have heard about ethical and legal issues. There is lack of information at school. (IN01, Pos. 91)	–
Social conflicts	Yes, we do have aggressive residents sometimes. However, we try to keep them calm by talking to them. We try to avoid giving them any tranquilizer. (IN06, Pos. 37)	There are residents with dementia, but there are also patients who can be dangerous. These dangerous residents use violence against other residents and sometimes even against employees. For this reason, the center always has a guard who intervenes when there are such situations. (Public_NH 01, Pos. 14)

Based on their formal education and age, the interviewees form two groups: 10 nurses have only a few years of experience but a university education (low experience/high education) and 5 nurses have decades of experience but only college education (high experience/low education).

The younger nurses report participating in recent ethical and communications training, showing development toward better formal education. However, learning by doing and following the example of more experienced staff is also crucial. Older and less educated nurses show unfamiliarity with ethical and legal questions and often did not receive much updated training.

During the observations, nurses of all ages displayed a great level of autonomy and provide many medical services that would legally require a doctor. This strong level of autonomy is highly problematic, as the confidence in their skills by all stakeholders does not necessarily reflect their professional education. This practice is likely a result of shortcomings in availability of qualified staff and funds.

Social conflicts

Although formal legal conflicts are scarce, many of the conflicts described by the nurses have legal implications or consequences. In extreme cases, violence or neglect can lead to investigations, although legal consequences for the staff are rare.

IInsults or sometimes threats from the family members toward the staff, are reported by the nurses. During the observations, emotionally harsh treatment of the residents was observed, especially in the state-funded nursing homes. Conflicts among patients themselves are generally minor.

Violence against the staff and other residents occurs, especially in the state-funded institutions (see Table 5). In one of the public nursing homes, the researcher was threatened by an agitated patient during the meal. In such institutions, nurses are equipped with tranquilizers. Sexual violence among the residents is reported by one nurse and ascribed to a loss of control over the patients.

When looking at the different types of conflicts separated by the education of the interviewees, a trend becomes clear.

As Figure 3 shows, nurses with only college degrees report more resident–staff conflicts and, more frequently, verbal violence. In contrast, the younger and better-educated staff report more conflicts with the families. In addition, a willingness of younger, better-educated staff to oppose the wish of the family was observed by the researcher.

Figure 3.

Ethical conflicts and education (percentages of statements of the group).

This could indicate that the more experienced nurses avoid conflicts with the families and follow their wishes. Instead, their conflicts focus on the patients themselves. The younger nurses with university diplomas are more aware of legal regulations, such as telling the patient their diagnosis, allowing informed consent, and empowering the patient to make decisions themselves. While enforcing these rights on behalf of the patient, they risk coming into conflict with families. However, this evidence is inconclusive in this study, as the younger and well-educated nurses tend to work more frequently in private nursing homes, which are marked by less violence against the patients and more influence by the family. Still, this raises the important question of how young nurses with proper legal and ethical education can be prepared for conflicts with the family, even in such model institutions as the private nursing homes.

Discussion

Although many of the interviewees lack a formal understanding of the ethical and legal constructs of everyday care issues, they do follow informal standards and have a subjective understanding of proper behavior. In particular, neglect of patient consent, such as eating or bathing, is not a lack of education but is often the result of a lack of financial resource and staff, which is an issue that affects the entire medical profession, particularly in geriatrics.²⁸ Therefore, sufficient resources play a critical role in improving and applying standards in institutions of geriatric care.

Regarding end-of-life issues in this study, many nurses disliked discussing death and palliative care regarding a patient’s condition due to cultural aversion. This is consistent with results, in a UK study, in which nurses felt disclosure was important in preparation for death, mainly for religious reasons.²⁹ In the same study, some nurses avoided discussing patients’ condition with them because they felt they would not comprehend. This ambiguity of avoidance and disclosure is also found in the present study, where families show a stronger preference for the first and nurses more frequently a tendency for the latter.

Knowledge about legal issues was conspicuously missing in the interviews. More comprehensive knowledge in this area is critical not just to ensure legal security of the nurses, patients, and their families, but also to enforce modern standards regarding patient and nurse rights. Only when rights are known, they can be properly applied and protected. For example, policies concerning use of physical restraints might be known, but not knowing the legalities may cause the nurse or the facility to be liable. Although an option may be seen to be the most humane to the caregiver, it may not be a legal option.³⁰

In this study, formal living wills are disregarded as legal constructs.⁸ The older people can communicate an oral will, but their decisions about present or future care are neglected. This creates an ethical dilemma when a patient does not want to accept treatment or if the family representative feels treatment might do more harm than good. In any case, advance directives and living wills are only used by a small percentage of people. Such a dominance of oral wills is also found in other studies outside of Albania. For example, a study conducted in Florida reports that, “only 1 in 3 chronically ill patients have a documented advance directive.”³¹ This raises the important question how the observed improvements in documentation can be applied to advance directives.

The study unveiled potential generational differences between senior nurses with college degrees and newer, less experienced nurses with a university diploma. Although these are also rooted in the differences between the observed institutions, the younger nurses proved in general more willing and able to talk about ethical and legal issues. In addition, they reported social conflicts with families more frequently. This suggests that increased legal knowledge of newer nurses about patient rights could trigger conflicts with family members, while experienced staff may have more diplomacy when dealing with families, as evidenced by fewer conflicts. In a related study of nurses in Uganda, it was found that specific ethics education is necessary for effective application of ethical guidelines, and that advanced-degreed nurses usually had overall better ethics knowledge.³² This study finds that acceptance of ethical standards can be met with cultural aversion if they are not properly presented in the cultural context and nurses are not prepared for the resistance they might face from families.

A lack of understanding of ethical and legal issues confirmed the need for further education; although several of the interviewees described ethical or even legal aspects when talking about everyday issues in their interviews, many were unable to give examples when directly requested to do so. This is not an issue particular to Albanian nurses, as noted in a study that there is a divide between academic learning and what is put into practice.³³ A better formal education of nurses as well as effective way of communicating such results and questions in a non-academic context is important, ensured here through the professional familiarity of the researcher with those interviewees.

Limitations and strengths

The results of this qualitative study cannot be generalized to other populations. Although an effort was made to maximize the study sample, it may not be representative of all Albanian elder care institutions. Furthermore, the willingness for interviews depended on the consent and availability of the nurses, which put overworked nurses from institutions with harsh conditions at a disadvantage. Another limitation of this study was the choice to focus only on nurses’ experiences. Although spontaneous conversations were held with residents during the visit, the design of the study led to neglecting in-depth perspectives of the residents or their families.¹³ Also, because the data collection depended on the access to the institutions which is currently even more restricted, the data collection period could not reflect a longer time and is just a snapshot.

The strength of this study is the cultural and professional familiarity of the researchers with the setting that led to unique access to these institutions in a country that is not prominently studied in international research. The rigorously methodological approach incorporating ethnographic methods of data collection and a structured analysis of the results¹⁴ allowed insights into the reality on ethical and legal issues that nurses face in elder care in Albania.²⁰

Conclusion and implications

Albania is in the process of attempting to enact EU laws and regulations regarding older people and human rights. Due to the increasing older people population, Albania is running into problems for which it is only scarcely prepared, most notably in the lack of nursing homes that are adequately staffed and equipped to care for the older people.³⁴

There are cultural and social forces that might work against enforcing such regulations. Strengthening patient rights, especially in the form of patient’s autonomy in decision making, results in conflict with the traditional role of Albanian families. Even when nurses are adequately trained about legal and ethical issues, they cannot enforce such regulations easily and face major obstacles. The social and economic dependency of the older people on their relatives elevates their family to a position of power that cannot be neglected.²⁰

Three actions seem advisable if legal regulations are to be enforced and patients’ rights to be strengthened:

First, nurses need to be educated in legal issues and be trained to handle conflicts with the family. One example given in the interviews was nonverbal communication with the patient to communicate their situation; another is explaining to the family the importance of informed consent.

Second, awareness of families must be raised regarding the importance of informed consent. Information and social work should be targeted at families to increase their understanding when informing the older people of their diagnosis.

Third, the state must reduce the financial and social dependency of the older people on their families. Providing sufficient pensions, places in nursing institutions and funding for such institutions plays a critical role here.

Geriatric care is a specialized field that needs knowledgeable and educated professionals that are aware of the diseases that affect the older people. Educating staff and patients in what elder and palliative care entails and what is needed in the future are essential steps to providing long-term care.²

Footnotes

Acknowledgements

Gratitude is expressed to the Albanian nurses and Institutions who participated in this study.

Conflict of interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Nertila Podgorica

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