title: Feasibility and Acceptability of Implementing the Integrated Care Plan for the Dying in the Indian Setting: Survey of Perspectives of Indian Palliative Care Providers.
abstract: BACKGROUND
  Capacity to provide end-of-life care in India is scored as 0.6/100, and very few people in India have access to palliative and end-of-life care. Lack of end-of-life care provision in India has led to a significant number of people receiving inappropriate medical treatment at the end of life, with no access to pain and symptom control and high treatment costs. The International Collaborative for the Best Care for the Dying Person is an initiative that offers the opportunity to apply international evidence on the key factors required to provide best care for the dying in the Indian context. The aim of this study is to ascertain the perceptions of Indian palliative care providers regarding the feasibility and acceptability of implementing the international program in the Indian setting.
  
  
  METHODS
  Thirty participants from 16 palliative care centers who had participated in the foundation course of the International Collaborative for Best Care for the Dying Person were purposively chosen for the study. All participants were asked to complete the survey questionnaire that had both open- and close-ended questions.
  
  
  RESULTS
  Twenty-three participants completed this survey. The majority of items in the international program were considered relevant, representative of end-of-life care and acceptable in Indian setting. However, participants felt that the concept of the multidisciplinary team (MDT) being responsible for recognizing death may not be possible in the existing Indian setting and a senior doctor may not always be available to document a MDT decision. Some participants felt that in the Indian setting, it was not always possible to communicate about the dying process and make patient aware of the same. A small number of participants felt that using leaflets for communicating end-of-life care process may not be always possible due to logistic reasons and cost. Six participants felt that giving the dying person the opportunity to discuss their wishes, feelings, faith, beliefs, and values may not be possible, representative, and not applicable in Indian setting. The majority of participants felt that using equipment such as a syringe driver for continuous infusion is relevant (n= 16) and representative (n= 13) of end-of-life care, however most thought that it could be challenging to apply in an Indian setting (n= 17), including concerns about lack of familiarity and knowledge and applicability in home care settings. Six participants had reservations regarding the limitation of life-sustaining treatment and felt that discussion and review of cardiopulmonary resuscitation should happen prior to patients entering their end-of-life phase. While most participants thought relevance, representation, and applicability of assessing skin integrity as important, a few participants felt this assessment challenging, especially in home setting, and recommended Braden scale to be used instead of Waterlow for assessing skin integrity. Most participants agreed on the importance of assisted hydration and nutrition; however, again a minority highlighted challenges in this area. Five participants felt that they would sometimes continue hydration under duress from a patient's family. Participants agreed unanimously on the relevance and representation of recording of physical symptoms by MDT-initial and ongoing-with a few participants indicating that frequent observations recommended in the care plan may not be feasible in home care setting. The majority also agreed on the relevance, representation (n= 21), and applicability (n= 18) of providing written information about after-death care, with a small number indicating challenges in the Indian setting, for example, very few unit currently having this information available (n= 2). Notifying general practitioners, primary care physicians, and other appropriate services on patients' death may not be easily applicable in the Indian setting.
  
  
  CONCLUSIONS
  The survey of palliative care providers about the feasibility and acceptability of integrated care plan at end of life has shown that the international program is relevant, representative of end-of-life care, and acceptable in Indian setting. As would be expected, a number of items need careful consideration and appropriate modification to ensure relevance, representation, and applicability to Indian sociocultural context. The results also suggest that palliative care providers need additional training for the implementation of some of the items in the development of an India-specific document and supporting quality improvement program.
authors.affiliation: Department of Palliative Medicine, Tata Memorial Centre, Mumbai, Maharashtra, India.
authors.forename: Naveen
authors.initials: N
authors.lastname: Salins
authors.affiliation: Emeritus Palliative Care Consultant and Director of Education and Research, Karunashraya, Bengaluru, Karnataka, India.
authors.forename: Jeremy
authors.initials: J
authors.lastname: Johnson
authors.affiliation: Honorary Palliative Care Consultant and Ex Director, Bangalore Baptist Hospital, Bengaluru, Karnataka, India; National Coordinator, Palliative Care Programme of The Christian Medical Association of India, New Delhi, India.
authors.forename: Stanley
authors.initials: S
authors.lastname: Macaden
keywords: Dying; India; integrated care plan; palliative care; survey