End of Life Care: Healthcare Provider’s Mindset, Needs and Barriers

Abstract

Introduction: In India, End of Life (EOL) care practice has gained momentum. EOL can have significant impact on physical, emotional and financial aspect. Care planning, coordination and good communication are important if the needs and preferences of people are to be met for their EOL care. There is very minimal information available on awareness, attitude, planning and provision of EOL care. Aim: To assess the Knowledge, Attitude and Practice (KAP) among hospital administrators, doctors and nurses on EOL care and to the decision-making aspects and possible barriers in the provision of EOL care. Materials and Methods: A descriptive survey-based study was conducted at the Department of Hospital Administration, Vydehi Institute of Medical Science and Research Centre Bengaluru, Karnataka. The questionnaire was distributed among 100 healthcare providers including hospital administrators, doctors and nurses involved in EOL care. A structured questionnaire containing 15 questions were used to gather data from the respondents wherein question no. 1 to 5 were based on the knowledge and question no. 6 to 13 were based on practice and question no. 14 and 15 were based on the attitude. All data were entered in MS Excel and statistical analysis was done using the Statistical Package for the Social Sciences (SPSS) Version 20.0. Results: Majority of respondents belonged to the group ranging from 25-35 years of age, wherein 58 were males and 42 were females. Ninety participants out of 100 were aware of the concept of “EOL care”, 59 were aware about the current laws concerning EOL care and 17 participants had their medical staff in the hospital being educated and trained on EOL care (p>0.05). Around 29 participants have experienced lack of communication while giving EOL care to patients; 54 out of 100 participants have experienced fury from patient/attender during their practice and 66 participants felt that the hospital should take into consideration of spiritual, religious and cultural beliefs in dealing with EOL care patient. Furthermore, Chi-square test revealed significant (p<0.001) relation between the factors such as age of the patient, duration of disease, economic factors, health insurance, patient suffering, emotional distress among patient/attender and no hope of good quality of life in making decision during EOL. Conclusion: Along with improvements in rules and regulations, there is an urgent need for increasing in awareness among stakeholders who are involved in EOL care practice.

Keywords

• disease
• quality of life
• terminally ill care