Introduction
Death and dying are natural stages in the cycle of human life as well as in an ageing society and a reality every individual must experience at one point or the other in life. The global healthcare landscape has witnessed a paradigm shift in addressing the complexities of end-of-life care, particularly in the context of an ageing population (Afolabi et al. Reference Afolabi, Nkhoma and Maddocks2021; Sepulveda et al. Reference Sepulveda, Habiyambere and Amandua2003). Like many other nations, Nigeria is undergoing a demographic shift marked by a rise in the number of older adults (Cadmus et al. Reference Cadmus, Adebusoye and Owoaje2021; He et al. Reference He, Aboderin and Adjaye-Gbewonyon.d.). Understanding the elements that impact older individuals’ knowledge and views about end-of-life care and advanced directives as this demographic shift occurs is critical for improving the quality of life in their later years.
Advance directives are legal documents that allow individuals to express their preferences and instructions regarding medical treatment and healthcare decisions in advance, particularly in situations where they may be unable to communicate or make decisions for themselves. These directives provide a way for individuals to maintain control over their healthcare even if they become incapacitated. Advance directives can manifest in two separate yet nonexclusive forms. The living will is a written document wherein an individual outlines the healthcare treatments they decline or desire to receive if they become incapable of autonomously expressing their wishes. A power of attorney for healthcare (healthcare proxy or medical power of attorney) is a written instrument that enables an individual to designate a representative person (often a family member or close friend) to make healthcare decisions when they can no longer do so independently (Macedo et al. Reference Macedo, Rego and Nunes2023) Unlike a living will, which outlines specific treatment preferences, a durable power of attorney for healthcare grants more general decision-making authority to the appointed agent.
Among older adults, there is generally a high level of awareness about death due to the experience of losing a loved one and the presence of at least a morbidity (Vig et al. Reference Vig, Davenport and Pearlman2002). Although there is a plethora of evidence about knowledge and perception of older adults toward end-of-life care and advanced directives from many high-income countries (Frechman et al. Reference Frechman, Dietrich and Walden2020; Hopkins et al. Reference Hopkins, Bentley and Phillips2020; Iyer and Brown Reference Iyer and Brown2022; Macedo et al. Reference Macedo, Rego and Nunes2023; Moss et al. Reference Moss, Deutsch and Hollen2018; Motamedi et al. Reference Motamedi, Brandenburg and Bakhit2021; Seymour et al. Reference Seymour, Gott and Bellamy2004), there is limited information from low- and middle-income countries such as Nigeria where resources for end-of-life care intervention are limited (Cadmus et al. Reference Cadmus, Adebusoye and Olowookere2019, Reference Cadmus, Owoaje and Akinyemi2015; Jegede and Adegoke Reference Jegede and Adegoke2016; Luna-Meza et al. Reference Luna-Meza, Godoy-Casasbuenas and Calvache2021; Nwakasi et al. Reference Nwakasi, Esiaka and Pawlowicz2023). Nigeria is very diverse in culture, ethnicities, and varying healthcare practices. Still, it is confronted with the challenge of aligning traditional beliefs and modern healthcare interventions in addressing the evolving needs of its ageing population (Abubakar et al. Reference Abubakar, Dalglish and Angell2022; Alderwick et al. Reference Alderwick, Hutchings and Briggs2021; Omenka et al. Reference Omenka, Watson and Hendrie2020; Rowe et al. Reference Rowe, Berkman and Fried2016).
Nigeria has a high cultural significance connected to ageing, and the prevalent misconceptions about end-of-life care and advanced directives have created a complex web of factors influencing the knowledge and perceptions of older adults in Nigeria (Cadmus et al. Reference Cadmus, Adebusoye and Olowookere2019; Ekore and Lanre-Abass Reference Ekore and Lanre-Abass2016; Esther Oyebade et al. Reference Esther Oyebade, Oyinlola and Asenjo Palma2024) Moreover, limited public awareness campaigns and educational initiatives focused on end-of-life care have contributed to a dearth of information among older adults, their families, and healthcare providers (Cadmus et al. Reference Cadmus, Adebusoye and Olowookere2019; Oluwagbemiga Reference Oluwagbemiga2016). Few empirical literature have focused on the lack of open conversations and awareness surrounding end of life and advanced directives in Nigeria (Cadmus et al. Reference Cadmus, Adebusoye and Olowookere2019; Omoyeni and Gwyther Reference Omoyeni and Gwyther2018). The socioeconomic disparities in Nigeria also play an essential role in shaping the knowledge and perception of older adults toward end-of-life care (Afolabi et al. Reference Afolabi, Nkhoma and Maddocks2021; Agbawodikeizu et al. Reference Agbawodikeizu, Agwu and Okoye2019; Gureje et al. Reference Gureje, Oladeji and Abiona2014). Access to healthcare resources, financial constraints, and regional variations in healthcare infrastructure contribute to diverse experiences and perspectives among older individuals across the country (Mahmoud et al. Reference Mahmoud, Nwakasi and Oyinlola2023).
Furthermore, the influence of religious beliefs and practices cannot be overlooked, as Nigeria is home to a population with deep-seated religious convictions (Mahmoud et al. Reference Mahmoud, Nwakasi and Oyinlola2023; Nwakasi et al. Reference Nwakasi, Esiaka and Pawlowicz2023). Thus, understanding how religious ideologies intersect with perceptions of death, dying, and end-of-life decisions is essential for developing culturally sensitive interventions that respect the diverse spiritual and religious backgrounds of older adults in Nigeria and countries with similar setups. Previous studies and qualitative analyses highlighted that older adults in Nigeria particularly those attending the hospital setting viewed end of life care and advance directive through the cultural lens of family involvement and traditional beliefs (Cadmus et al. Reference Cadmus, Adebusoye and Olowookere2019). Also, many older adults prefer to spend their final days at home surrounded by their loved ones rather in the hospital settings (Cadmus et al. Reference Cadmus, Adebusoye and Olowookere2019). The predominant perceptions among the participants bordered mainly on the arrangements for place of death, burial, and property sharing. Also, in the order of preference, the primary decision-makers in the advanced directive process are mainly the oldest male child, religious leaders, and legal practitioners (Cadmus et al. Reference Cadmus, Adebusoye and Olowookere2019).
Therefore, investigating those often overlooked factors associated with the perception of older adults toward advanced directives and end-of-life care at a geriatric care settings is considered an important step toward documenting the inevitably realities of older adults in Nigeria. Uniquely, this study move our understanding forward in the area of culturally dimensions of advanced care planning and end of life care in resource-limited context of a country like Nigeria. Empowering older adults to make informed decisions offers opportunities toward developing culturally sensitive interventions, respecting religious and social norms, ultimately benefiting older adults’ end-of-life care.
Methodology
Study design
This cross-sectional study was conducted at the Chief Tony Anenih Geriatric Centre (CTAGC) outpatient clinic, University College Hospital (UCH), Ibadan. Ibadan is the capital city of Oyo State in the southwestern area of Nigeria. It has a population of 3.6 million inhabitants, of which about 6% are aged 60 years and above (National Population Commission 2009). The CTAGC was selected because it is the pioneer purpose-built center in Nigeria, established on November 17, 2012, to give holistic care to older patients coming to UCH. While, this is one of the first geriatric center in Nigeria to offer both inpatient and outpatient services for older adults in Nigeria, the center is the only center that provides palliative care services to older adults in Nigeria (Afolabi et al. Reference Afolabi, Nkhoma and Soyannwo2022; Omoyeni and Gwyther Reference Omoyeni and Gwyther2018).
In this study, we defined advanced directives as documented instructions by patients to ensure that their medical preferences are fulfilled if they can no longer communicate with their clinician or family members (Waite et al. Reference Waite, Federman and McCarthy2013). The directives also include end-of-life care treatment options or preferences before death, designation of power of attorney, including health care, and decision-making regarding a living will (Hopp and Duffy Reference Hopp and Duffy2000; Motamedi et al. Reference Motamedi, Brandenburg and Bakhit2021).
Study population
The study population included older male and female patients (aged 60 years and above) who presented at the Outpatient Clinic of the CTAGC, UCH, Ibadan. The age of the respondents was determined by asking them, using historical events ((Ogunniyi and Osuntokun Reference Ogunniyi and Osuntokun1993), the age at marriage, and the age of their first child. All male and female older patients who consented to participate in the study were included, while acutely ill older adults were excluded. An average of 230 newly registered older patients are seen monthly at the CTAGC clinic. Patients who presented at the GOP clinic were recruited using a systematic random sampling technique.
Data collection
Data were collected using a semi-structured questionnaire. Participants were recruited through the clinical setting of the CTAGC, and older adults with cognitive impairment were excluded after been confirmed by the physician. The first section of the questionnaire obtained information on the respondents’ demographic characteristics, including age, sex, ethnicity, religion, marital status, and number of children. Also, the participants’ economic characteristics, including educational level, income, living arrangements, lifestyle habits, and availability of financial and social support, were obtained. Four questions were used to calculate the knowledge of advanced care planning (ACP). “Have you ever heard of ACP?” “Have you ever heard of End of Life?” “Have you ever heard of a living will?,” “Have you ever heard of power of attorney?.” The respondents were asked to respond yes or no to questions. The variables were summed. A positive response to any of the questions was termed good knowledge.
The survey of end-of-life care, an internationally tested scale design (Rietjens et al. Reference Rietjens, Sudore and Connolly2017), was used to measure participants’ knowledge and perception of dying, decision planning, care, placement, and options for enhanced care for older persons at the end-of-life stage. The respondents were asked to answer questions on a 4-point scale ranging from SA - strongly agree (4) agree on SD - strongly disagree (1).
Data analysis
Data collected were entered, cleaned, and analyzed using the Statistical Package Software SSPS (version 21). Descriptive statistics were used to describe the sociodemographic characteristics of the respondents. Appropriate charts were used to illustrate categorical variables. Chi-square statistics were used to assess the association between categorical variables and t-test to test the association between continuous variables. The values of significance were set at p ≤ 0.05.
Results
A total of 204 participants were interviewed with a mean age of 71.3 ± 7.2 years, and the majority, 137 (67.2%), were females aged between 60–69 years (46.1%) and married. Only 12 (5.9%) participants had no formal education, while 4 (2.0%) lived alone. Financial support was mainly from their children or grandchildren 40 (68.6) (Table 1).
Table 1. Sociodemographic characteristics of the participants
Figure 1 depicts the information the older persons received about advanced care directives. The majority (74.5%) have not heard about ACP. Few of the respondents (6.4%) know what it is all about, have heard about end-of-life decision-making, (20.1%), living will (19.1%), and power of attorney (19.7%). In addition, few of the participants (11.3%) have considered discussing ACP. About a third of the respondents (29.9%) thought of a living will, of which only about a third (34.4%) had written one.
Figure 1. Information received about advanced care directives.
Table 2 describes perceptions and beliefs regarding end of life and related issues. The most common source of information was through religious leaders (89.7%) and media (90.7%). Most respondents perceived end-of-life provisions as preparing for death (81.4%) and preparing a will or document (87.3%). Only 26 (12.7%) were willing to be included in medical experiments when dying. Table 3 shows participant’s preferences toward the end of life. Most of the participants would not prefer that healthcare providers decide on their care in the end stages (90.2%). Also, most participants would prefer care within a home rather than an institution 185 (90.7%). Few participants (13.7%) were prepared to have a living will so the doctors and other healthcare professionals would know their preferences and advanced directives in the end stages of life. Also, a majority believed that older adults did not deserve less consideration than younger people (86.3%) and should not be last on the list regarding receiving medical care in the hospital (85.3%).
Table 2. Participant’s perception preferences and sources of information regarding end of life and related issues (N = 204)
Table 3. Participant attitude and preparedness toward the end of life (N = 204)
The respondents’ wishes when they are incapable of making medical decisions at end of life are described in Table 4. Most of the participants (65.2%) desire to be able to make their own decisions at the end stages of life and agree there may be differences between their opinions and those of their family members (70.1%). Also, most participants agreed that they could lose their decision-making power due to severe illness or injury (71.1%), and would not want to burden their families with their medical treatment preferences at the end of life (70.6%). Likewise, the majority (70.6%) would prefer not to be resuscitated at the end of life. However, 144 (70.6%) felt they were healthy and did not need to consider such decisions presently.
Table 4. Respondents’ wishes when incapable of making medical decisions
Table 5 shows participant’s medical preferences and how they would be recorded. Over half, 116 (56.9%), agreed to be put on a ventilator. Few (15.7%) agreed to be cared for in the hospital or nursing home. A similar proportion of respondents agreed to verbally inform family members or acquaintances about their advanced directives (63.8%) or by making an audio or videotape recording (63.8%).
Table 5. Participant’s medical preferences in advance care planning
Table 6 shows the factors associated with preparedness for end of life, including male sex, higher educational status, and good self-rated health.
Table 6. Factors associated with preparedness for the end of life
* Significant at 5% significance.
SRH = self-rated health.
Discussion
The findings from the survey reveal a complex interplay of cultural, religious, and individual beliefs on older person’s perceptions and preparations for the end of life. Similar to other LMIC studies, most respondents had never heard of ACP (Bar-Sela et al. Reference Bar-Sela, Bagon and Mitnik2021; Ekore and Lanre-Abass Reference Ekore and Lanre-Abass2016; Hou et al. Reference Hou, Lu and Yang2021; Lim et al. Reference Lim, Lai and Lim2022; Wang et al. Reference Wang, Zhang and Hong2021) (Hou, Wang Lim). However, in high-income countries like Switzerland (47%), the USA (58%), and Portugal (76.3%), the level of awareness about ACP is high and may be due to existing legal regulations in the countries about advanced directives. Additionally, unlike a study in Israel, where most participants reported hospitals as their source of information (Bar-Sela et al. Reference Bar-Sela, Bagon and Mitnik2021) reported sources of information in this study were media and religious leaders. This finding may be because Nigeria is known for its high level of religiosity (Ekore and Lanre-Abass Reference Ekore and Lanre-Abass2016; Lanre-Abass Reference Lanre-Abass2008a).
A substantial percentage of participants do not prefer healthcare providers to make decisions about their care in the end stages. This finding may be because research has shown that in the African tradition, the responsibility for decision-making during the end-of-life phase is entrusted to the family members of the individual in question. (Cadmus et al. Reference Cadmus, Adebusoye and Olowookere2019; Lanre-Abass Reference Lanre-Abass2008a). This practice may, however, lead to discord as events unfold (Lanre-Abass, Reference Lanre-Abass2008a). This view is supported in this study as participants felt that there may be a discrepancy between their wishes and those of their families.
Factors associated with ACP include being married and having a formal education. Married individuals typically have a close partner who can provide emotional support and encouragement to engage in ACP. A spouse can help with the logistical aspects of creating advanced directives, such as completing paperwork and consulting with healthcare providers. Likewise educated individuals are more likely to practice ACP for several reasons, including better health literacy, access to resources, critical thinking skills, and awareness of the benefits. Like other studies, many respondents agreed to inform family members or acquaintances about their medical preferences verbally. This decision indicates a reliance on interpersonal communication. The willingness to verbally communicate preferences reflects a sense of individual empowerment in decision-making.
In this study, participants were mainly unwilling to undergo medical experiments during the dying process. Possible reasons for this reluctance from other studies include fear, trust in medical professionals, or cultural beliefs. In addition, most participants’ perception of being healthy and not needing to consider such decisions may indicate a sense of invulnerability or a belief that these decisions are not immediately relevant.
In the African culture, older persons are shown to give verbal instructions to their children concerning their care at the end of their lives. Such instructions may include avoiding prolonged hospital stays, allowing them to die on their own beds and in their children’s arms at home, how to conduct the burial ceremony, where they are to be buried (Ekore and Lanre-Abass Reference Ekore and Lanre-Abass2016; Oyinlola Reference Oyinlola2024). Regarding the preferred location of end-of-life care, participants in the study preferred care at home rather than at an institution. Few studies report older person’s preferences for institutional care rather than being managed within the home (Kim et al. Reference Kim, Heo and Hong2019). Likewise, few participants were willing to have a living will, indicating their preferences and directives. This lapse suggests a need for a proactive approach to end-of-life planning. Exploring the reasons behind this choice and the potential barrier to creating such documents can lead to discussions on the importance of ACP.
The fact that almost one-third of respondents have thought about living will indicate a level of contemplation about end-of-life preferences. However, the number of respondents who have actually written a will is relatively low. Unlike the Western world, Africans do not like facing the reality of death and often do not encourage the contemplation of death, be it their own death or the death of their loved ones. It is somewhat taboo to think of or discuss one’s death (Lanre-Abass Reference Lanre-Abass2008a; Lee and Vaughan Reference Lee and Vaughan2008). Exploring the reasons behind this discrepancy can provide insights into individuals’ challenges in translating their intentions into concrete, documented plans.
About half of the participants agreed to have cardiopulmonary resuscitation and artificial ventilation. This is not surprising because Africans believe in the sanctity of life, and it should be preserved by all means possible. The average African is not likely to discontinue life-sustaining treatment once it has commenced and does not favor any artificial termination of life (Ekore and Lanre-Abass Reference Ekore and Lanre-Abass2016; Lee and Vaughan Reference Lee and Vaughan2008). The majority would prefer not to be resuscitated at the end of life, which also explains why the highly invasive procedures were not accepted.
Study limitations and strengths
This study is not without its limitations. The sample size is small and may not represent the broader population of older adults, limiting the generalizability of the findings. Also, relying on self-reported data can introduce biases, such as social desirability bias, where participants might provide responses they think are expected rather than their actual beliefs or knowledge. Older adults might have difficulties recalling past information accurately, which can affect the reliability of the data. The cross-sectional nature of the study captures perceptions and knowledge at a single point in time, missing potential changes over time or the impact of interventions. Knowledge and perceptions of end-of-life care can vary significantly across cultural and societal contexts. Without accounting for these factors, the study might miss essential variations. Addressing these limitations in future research can enhance the robustness and applicability of findings, ultimately contributing to better end-of-life care planning for older adults.
This study despite its limitations has its strengths. The study focuses on older adults, who are the primary demographic affected by end-of-life decisions and advanced directives ensures applicability of the results to the group. Also the study was conducted in a geriatric center means participants are likely receiving specialized care, making findings particularly relevant for similar healthcare settings.
Conclusion
The study provides valuable insights into how much older adults know about advanced directives and their attitudes toward end-of-life planning. Most older persons in this study were unaware of ACP, which is a significant finding. Discussing the reasons behind this lack of awareness could unveil potential barriers, such as limited access to information, cultural factors, or communication gaps within healthcare systems. The overwhelming reliance on religious leaders as a source of information suggests a strong influence of cultural and spiritual beliefs in shaping individuals’ perceptions of end of life. There is a need for targeted efforts to raise awareness and understanding of advanced care directives among older persons. Engaging community leaders, religious institutions, and other community resources in disseminating information may be vital in reaching older individuals. Information obtained can guide healthcare providers in developing better communication strategies and resources to assist older adults in making informed decisions about their end-of-life care.
Acknowledgments
Eniola Olubukola Cadmus was supported by the Consortium for Advanced Research Training in Africa (CARTA). CARTA is jointly led by the African Population and Health Research Center and the University of the Witwatersrand and funded by the Carnegie Corporation of New York (Grant No. G-19-57145), Sida (Grant No:54100113), Uppsala Monitoring Center, Norwegian Agency for Development Cooperation (Norad), and by the Wellcome Trust [reference no. 107768/Z/15/Z] and the UK Foreign, Commonwealth & Development Office, with support from the Developing Excellence in Leadership, Training and Science in Africa (DELTAS Africa) program. The statements made and views expressed are solely the responsibility of the fellow.
Oluwagbemiga Oyinlola is supported by the Social Science and Humanities Research Council (SSHRC) 2022 Vanier Canada Doctoral Scholarship. The statements made and views expressed are solely the responsibility of the scholar.
Ethical approval
Ethical clearance for the study was obtained from the joint University of Ibadan /University College Hospital Ethical Review Board. Permission was also obtained from the Director of the CTAGC. Written informed consent was obtained from each participant before data collection. Respondents were allowed to sign or thumbprint the document depending on their literacy level. Data collected was kept confidential and entered on a password-protected computer accessible only to the researcher, data entry clerk and statistician. To maintain confidentiality, the names of participants were not included in the questionnaire. Only serial numbers allocated to the participants were written on the questionnaire. The questionnaire was translated into the local Yoruba language and back-translated to English to ensure the original meaning was retained. The pretest was carried out among older persons attending other clinics within the hospital. All respondents were managed for their primary complaints.
Open access
