Elevating the knowledge of palliative care in HPs and evaluating how these perceived barriers have changed or persisted over time can help better develop mitigating strategies—including opportunities for education, staffing, and changes in institutions and care systems. Assessing these barriers creates opportunities for further research to address the most critical aspects in improving end-of-life care for patients and their families. Evidence demonstrated the benefits of palliative care for patients, and understanding knowledge and perceived barriers to palliative care in hospitals is important to expanding access and acceptance of this specialized care for critically ill patients and their families . HPs act as mediators between patients and their families, and between patients and their healthcare teams. A paper found that 79% of participants would use hospice if it were recommended by their physician . Additionally, nurses help families be more aware of patients’ views and concerns, and view the situation more realistically [22, 23]. Interestingly, we found that the higher the level of education, the higher the scores of perceived barriers in HPs in 2018. HPs with a graduate degree perceived greater barriers than did providers with a university or junior college degree. Because most providers with graduate degree were head or specialist nurses and they have been consciously responsible for promoting the PAA, they perceived that barriers were higher. It is recommended that PAA- and ACP-related training be included in annual mandatory continuing education for HPs [20, 24]. Particularly, HPs with managerial roles must undergo educational training of coordination or multidisciplinary consultations [24, 25].
Compared to 2013, total scores in 2018 of perceived knowledge of palliative care of HPs had significantly increased (p = 0.028). Taking the factors of ‘myths and misunderstandings’ as an example, in the 2013 survey, HPs’ informed consent and advanced decision-making instructions for patients and their families were classified in ‘myths and misunderstandings’. Physicians themselves are still troubled by the need to “describe the terminal illness” to the patient. Physicians think that “the doctor needs to save the patient's life” instead of allowing the patient to face death. In the early stages of an illness, HPs rarely discuss and communicate “about death” with patients and their families. It is difficult for physicians to predict life expectancy and they may lack an understanding of patient eligibility guidelines; it is difficult for HPs to explain the patient’s condition and give informed consent . By 2018, informed consent and decision-making directives seemed to have been more widely accepted and classified as ‘philosophy and treatment’ factors. This may indicate that the concept of palliative care is gradually improving among HPs. According to the PAA, patients can sign a medical decision form expressing whether they accept or reject receiving medical treatment beforehand when they still maintain full civil capacity . The PAA addresses informed consent and decision making, and allows patients to decide whether or not to receive medical treatments in the end stage of a disease. Thus, the ACP advocates the importance of communication in shared decision-making for patients who have a critical illness or who are known to be moving towards the end of life. It is defined as a voluntary discussion of a patient with his/her care provider(s) and family, drawing on a person’s values, goals, and concerns, and any preferences for particular treatments . The process of discussing, consulting, and documenting the wishes and preferences of future care, where possible, offering patients the opportunity to discuss important personal issues is considered an important improvement in care quality. In this study, the perceived knowledge of HPs also showed that the PAA has had a great effect. This shows that informed consent and decision-making have been included in the ‘philosophy and treatment’ of palliative care. HPs have positive attitudes about ACP after implementation of the PAA.
In 2018, the total score of barriers to palliative care perceived by HPs was significantly lower than that in 2013 (p < 0.001). Also, the patterns of perceived barriers had changed. In the 2013 survey, HPs faced many difficulties, including a lack of confidence in promoting palliative care, avoidance of talking about death and related issues, etc. Since enactment of the decree, we observed that the proportion of certain HPs who have experienced obstacles has changed. The Ministry of Health and Welfare in Taiwan announced the participation in hospice as a basic human right . The government cooperates with the instructions and promotion of the PAA, and HPs must participate in PAA training to qualify for certification. Most hospitals have hospice wards, hospice palliative home care, and shared care, in order to improve utilization of palliative care. This has had a positive impact, and utilization is rising year to year. However, there are still many difficulties which need solutions. After the promotion of the PAA, these difficulties transited into knowledge and attitudes that HPs must possess, but education and training can be used to help HPs cope with these difficulties. As to dimensions of information and communication between the 2013 and 2018 surveys, end-of-life care, misunderstanding palliative care, information on participation in decision-making, and pre-testamentary legal factors still plague HPs, patients, and their families. However, the PAA ensures that patients have the right to know all about their condition, and then they can make a decision before the end of life. Promotion of the PAA has encouraged information sharing and communication among HPs, patients, and families.
As to changes over the 5 years, HPs have reduced implementation barriers through PAA training. Shared decision-making (SDM) is seen as a key component of patient-centered care and emphasizes the importance of physician-patient relationships in optimizing health outcomes . With progress of the PAA, SDM is an important tool for HPs to discuss the life decision-making process with patients and their families. To help HPs face possible obstacles and facilitate decision-making require staff confidence in end-of-life discussions when working with patients and their families while respecting the influence of filial piety, a central value in traditional Chinese culture . HPs should grasp the chance to carry out these sharing procedures when a decision is required.
Strengths and Limitations
This is the first study in Asia to compare knowledge and perceived barriers among HPs before and after promotion of the PAA. Three factors of knowledge and perceived barriers identified can help HPs and stakeholders focus on them and develop interventions. Informed consent and decision-making were seen as ‘myths and misunderstandings’ in 2013, but changed to being a part of ‘philosophy and treatment’ in 2018. Accordingly, stakeholders may provide educational training in this direction. There are some limitations to this study. The survey was conducted in two local teaching hospitals in central and northern Taiwan. Even though the two hospitals were of comparable size and property, there might still be differences between the two hospitals. The results should be interpreted with caution. Also, although respondents of physicians and nurses represented a wide range of experiences in local hospitals, the surveys did not include other HPs, such as social workers, or psychotherapists. The results might not can be generalized to other HPs. Future research should be conducted on other HPs.