End-of-life decision-making of relatives and physicians towards Filipino patients in a persistent vegetative state: a grounded theory

Abstract

This study utilized a grounded theory approach to arrive at a substantial level theory of the process of decision-making for Filipino patients in a persistent vegetative state. The main participants of this study derived through purposive snowball and theoretical sampling were 10 relatives and 14 physicians of Filipino patients in a persistent vegetative state. The field sites of this study had been the Department of Neurosciences, the Supportive Palliative and Hospice Care Clinic and Ward 1 of the University of the Philippines-Philippine General Hospital (UP-PGH).

Line-by-line analysis as well as open, axial and selective coding of semi-structured interview transcripts revealed six major themes in the decision-making process of relatives namely: (1) Period of the Precipitating Event; (2) Period of Denial and Shock; (3) Factors Considered in Decision-Making; (4) Decisions Made; (5) Period of Desensitization, Anger, Waiting and =Acceptance‘; and (6) Sustained Processes. Five themes were identified in the decision-making process of physicians: (1) Preparing the Self; (2) Communicating the Diagnosis; (3) Presenting Options; (4) After Presenting Options; and (5) Sustained Processes.

Factors found to influence relatives in decision making included their (1) socioeconomic capacity; (2) their relationship with the patient; (3) their personal, religious and familial values; (4) physicians‘ implicit and explicit suggestions; (5) avoidance of guilt and blame for the death of their patient and "hiya" or fear of being socially-ostracized; (6) Prognosis, benefit and comfort of the patient; (7) family‘s perceived signs of improvement of the patient and (8) the patient‘s physical presence. Factors found to guide physicians in deciding what options to present to relatives included: (1) prognosis of the patient and clinical judgment; (2) Appraisal of family‘s psychosocial, economic and religious background; (3) type of hospital environment; (4) Comparison with past patients; (5) Patient‘s age and Quality of Life; and (6) Physician‘s experiences, personal, moral and ethical principles.

This study found that in the context of the Philippines, relatives are regarded as the ultimate decision-makers for their patients however physicians exerted influence through implicit suggestions of withholding and withdrawing treatment especially when the patient‘s prognosis is poor. The process of meaning-making has been found as a source of hope for relatives. The issue of medical triage due to insufficient hospital resources in UP-PGH has also been examined. The findings of this research suggest that the core Philippine values of hiya, smooth interpersonal relationships (pakikisama), amor proprio and utang na loob underlied most processes in end-of-life decision making.

The study concludes that the concept of "euthanasia" for Filipino relatives means caring for their patients and letting go only until such time that they perceive that God and the patient himself has =decided‘ that it is time to rest, namely when their patient‘s heart stops during the period of waiting and =acceptance.‘ For physicians, "euthanasia" means continually caring for the patient but indirectly suggesting and doing withholding and withdrawing of life-sustaining treatments from the patient so that this will be beneficial not only for the patient himself but also for those whom he leaves behind - euthanasia as humane care.