Urban people’s preferences for life-sustaining treatment or artificial nutrition and hydration in advance decisions | BMC Medical Ethics

This study unveiled a consistent trend in willingness expressions across five hypothetical clinical conditions, with over 90% of participants choosing to decline both LST and ANH. The highest refusal percentage was observed in the permanent vegetative state, demonstrating a pronounced inclination against interventions in scenarios characterized by severe cognitive impairment. This reluctance to accept LST and ANH persisted notably in the permanent vegetative state, severe dementia, and irreversible coma. More participants expressed a desire to decline treatment in the cases involving the permanent vegetative state, severe dementia, and irreversible coma, compared to scenarios with terminal diseases. Notably, in cases of terminal disease, a higher proportion of participants favored time-limited treatment for both LST and ANH.

The consideration of rejecting LST treatment, primarily in the context of terminal diseases, has not extended to conditions such as the permanent vegetative state, severe dementia, and irreversible coma [4]. Unlike patients facing terminal diseases who typically retain mental capacity, those in a permanent vegetative state, severe dementia, or enduring irreversible coma, lack the autonomy to make decisions independently. Consequently, some countries have embraced proactive approaches to make medical decisions in advance, aiming to enhance the prevalence of autonomous decisions [4]. Notably, in Taiwan, neurological diseases like the permanent vegetative state, severe dementia, and irreversible coma, initially not considered terminal among Asians [10], have gradually been added to the list of terminating illnesses. These newly incorporated diseases in Taiwan’s PRAA relate to neurological diseases that are highly likely to induce incapacity and dependence, causing cognitive impairment, reliance on others for care, and a diminished quality of life [11].

A nationwide population-based study in Taiwan highlighted that healthcare burden associated with dementia, revealing higher rates of hospitalization, intensive care unit admissions, and extended stays than cancer patients [10]. Except for blood transfusions, the prevalence of LST and ANH use was significantly greater in dementia patients than in cancer patients. Additionally, the utilization of ANH exceeded that of LST, including the additional requirements such as enteral tube insertion (72.6%), feeding (67.4%), mechanical ventilation (61.5%), endotracheal intubation (59.6%), cardiopulmonary resuscitation (33.9%), and hemodialysis (17.6%) [10]. Furthermore, the prevalence of tube feeding or enteral tube insertion in the dementia patients in Taiwan was significantly higher than in Europe (20.5% in Italy), North America (25% in the USA and 11% in Canada), and other Asian regions (66% in Hong Kong) [10].

In comparison to LST, participants showed a higher acceptance of ANH as a time-limited treatment, along with a preference for authorizing an HCA for subsequent decisions. In the case of irreversible coma, a higher number of participants inclined toward preferring an authorized HCA to make decisions about ANH. In conditions of severe dementia and terminal diseases, more participants were open to accepting time-limited ANH treatment. Regarding proclaimed unbearable/incurable disease, more participants authorized the HCA to decide on ANH.

The preference of LST and ANH can be influenced by various factors, including culture, religion, tradition, value and beliefs, administrative guidelines, and the dynamics of the doctor– family–patient relationships [1, 12,13,14]. Some studies have highlighted the challenges in providing ANH to the end-of-life patients [15, 16]. Patients may require artificial nutrition for a variety of reasons, such as survival, feeling better, or maintaining appearances for the sake of their family [3, 17]. For instance, artificial nutrition serves as essential support for comatose patients and those in a persistent vegetative state, bridging the gap until recovery becomes either imminent or unlikely [16]. Late-stage dementia is characterized by a loss of ability and desire to eat, causing emotional distress for relatives when patients reduce oral intake [16, 17]. Conflicting perspectives exist regarding ANH, viewing it either as a fundamental aspect of basic nursing care or as a medical therapy that still lacks clear indications [3, 18].

This study revealed that the social-demographic characteristics of the participants had significantly influenced their preferences for LST and ANH. Generally, females tended to outright refuse both LST and ANH, without expressing indecision, and they did not opt for time-limited treatment, authorizing the HCA, or receiving treatments. In contrast, males tended to receive the full or time-limit treatment. The gender difference in LST and ANH preferences observed in our study is aligns with previous studies on gender difference in palliative care preferences and treatments [19,20,21,22]. The societal perception that diseases as wars, with treatments symbolizing battles and aspirations for cures framed as fights, might motivate men to confront and combat these diseases [19, 23]. On the other hand, the social values afford women more space for sentimentality, expressing symptoms, and seek social assistance [19, 24].

Additionally, the study’s findings indicate that participants currently signing AD typically did not have significant illnesses, as over 73% reported no self-reported diseases or non-life-threatening chronic diseases. The decision to sign AD was based on their contemplation of five hypothetical clinical scenarios. There was a significant correlation between the decisions to sign AD and participants’ age, suggesting that age influences their contemplation, attitudes, and decisions. Participants under the age of 40 tended to opt for receiving full or time-limit treatment and authorizing an HCA for subsequent decisions rather than refusing outright. Those between the ages of 40 and 65 often remained undecided, while participants over 65 tended to refuse the full or time-limit treatment. This age-related trend aligns with findings indicating a positive association between age and AD signing in nursing homes and cancer patients [25], with older patients more commonly having DNAR orders [26].

Furthermore, two significant family-related factors contributing to the refusal of LST and ANH treatment were the reluctance of family members to assume responsibility and the rejection of HCA appointment. This mirrors the prevalent ACP issues in Asian culture, which primarily revolve around family-related concerns [6, 15]. Sun et al. reported instances in which ICU surrogates faced emotional interference from families with conflicting views on medical treatment, thereby influencing decision-making [27]. With the implementation of PRAA, we anticipate a better understanding of and emphasis on patient autonomy, enabling physicians to provide more accurate diagnoses and engage in more direct communication with patients.

Research limitations

The study exclusively investigated immediate preferences concerning ADs during ACP consultations. The research scope did not extend to subsequent alterations in choices or discussions post-consultations. Furthermore, participants were selected from Taipei City Hospital, designated as the primary trial and demonstration site for ACP in Taipei City. The exclusive focus on patients from one hospital imposes constraints on the external validity of the findings.

Implication

The findings provide insights into tailoring ACP consultation methods for ANH, considering social and cultural nuances. Adaptable and sensitive approaches can address diverse public needs, including those resistant to ACP consultations. Future research avenues may explore how medical choices evolve with changing health statuses and identify determinants influencing the duration of time-limiting treatments. Further investigation into the perspectives and attitudes of Taiwanese medical personnel regarding the removal of LST and ANH for patients with neurological diseases could enhance our understanding.