Discharge against Medical Advice at Neonatal Intensive Care Unit in Gujarat, India

Objective. We explored reasons for discharged against medical advice (DAMA) of neonates from a neonatal intensive care unit (NICU) through in-depth interviews of the parents/guardians. Methods. Of 456 babies admitted to NICU during April 2014 to March 2015, 116 babies were DAMA. Parents of randomly selected 50 babies of these 116, residing within 50 kilometers, were approached for in-depth interviews at their homes. Audio recordings were done and manually transcribed, analyzed in detail to explore common threads leading to DAMA. Basic demographic information of the newborns was retrieved from hospital records. Results. The prevalence of DAMA was 25.4%. Of 50 parents approached, 41 in-depth interviews were completed. Nonaffordability (38.6%), no improvement (14.6%), poor prognosis (12%), and inappropriate behavior of the patient relation office personnel (10.6%) were major factors contributing to DAMA. Parents of 6.6% neonates wanted guarantee of survival and 5.3% parents reported poor behavior of nurses. No gender bias was observed related to DAMA. One-third of neonates (34.1%) were DAMA on first day of admission. Conclusions. The issue of DAMA needs attention. Besides nonaffordability and clinical characteristics of the baby, communication (breaking bad news, counseling, etc.) and lack of adequate infrastructure for relatives emerged as modifiable factors leading to DAMA.


Introduction
The twentieth century witnessed transformation in human health. Advent of faster and miniature computers had cascading effect leading to exponential growth in technology and modern medicine that led to better health care in all age groups and across gender. The darker legacy of these advancements is the staggering cost of healthcare.
Significant improvements in maternal and child care indices were noted in India especially in last decade though India missed Millennium Development Goals (MDGs) 4 and 5 targets. India, with about 0.76 million neonatal deaths per year, recorded maximum neonatal deaths in the world in 2012 [1]. Further the decline in Neonatal Mortality Rate (NMR) is much slower than the decline in Infant Mortality Rate (IMR) and under 5-mortality rate resulting in appreciable share of neonatal mortality in overall childhood mortality [2]. Current figures reveal that neonatal mortality contributed to 70% of infant mortality and 57% of under-five mortality [3].
While there is a paradigm shift from hospital care to home care in developed economies partly to reduce healthcare costs, the developing economies look forward to institutional care for better health outcomes. To address the huge neonatal morality, facility based newborn care was introduced in India which was quite successful with about 90% survival rate in 2012-13 [2].
The advantages of institutional care are dampened by many factors including Healthcare Acquired Infections (HAIs) and withdrawal from treatment by the patients. Discharge against Medical Advice (DAMA) happens when a patient (or the parents or caregivers, in the case of a newborn) decides the timing of the discharge without a treating doctor's 2 International Journal of Pediatrics approval. DAMA not only raises clinical, ethical, and legal issues for the treating physician [4] but also leads to adverse health outcomes thereby burdening the health system even more [5]. There have been few attempts by developing economies to document the extent of the problem as well as the reasons behind DAMA in pediatric population [6][7][8][9][10][11] and neonates [12,13]. The studies in pediatric populations indicated that the problem is more prevalent in neonates. This has serious consequences considering limited physiological reserve of the neonates. These studies also indicated that reasons for DAMA vary according to settings, culture, and other factors.
Understanding the sociocultural aspects of DAMA is very important for a country like India which is investing a lot to reduce neonatal mortality through combination of Home Based Newborn Care (HBNC) and facility based newborn care (FBNC). This study aims to identify the reasons for DAMA from the neonatal intensive care unit (NICU) of a tertiary care hospital through in-depth interviews of the parents/guardians of the babies who were discharged against medical advice.

Methodology
The study was conducted at Shree Krishna Hospital, a rural tertiary care teaching hospital in Gujarat State of India. Parents of babies who were admitted to NICU during April 2014 and March 2015 constituted the sampling frame.
The NICU has a capacity of 22 beds and provides level III neonatal care. It is managed by 22 nurses who work in shift duty and 3 dedicated consultants. Four residents and 2 fellows are posted in NICU at any given time. The bed occupancy varies from 70% to 80% with average nurse to patient ratio of 1 : 2.
Shree Krishna Hospital is managed by Charutar Arogya Mandal, a nonprofit trust founded by the late HM Patel with a philanthropic vision. The hospital offers quality treatment at affordable cost to public at large. It offers huge discount to the underprivileged through a targeted approach. Typically, any child requiring critical care is offered 75% discount (excluding pharmacy) on the total bill if the parents are able to produce the below poverty line (BPL) card. Daily counseling about the child's condition is done by consultants/fellows whereas financial counseling is done by patient relation office (PRO) staff dedicated to NICU. Full/partial extra discount is offered to a child with/without BPL card through an elaborate system considering prognosis and paying capacity of the parents. All efforts are made by PRO staff to ensure that no child is denied treatment due to parent's inability to pay. After all possible efforts, if parents still want discharge against medical advice, a written consent is obtained from the parents. Albeit not a common practice in India, the parents are provided with a discharge summary to help them take informed decision.
Out of 456 babies admitted in NICU from April 2014 to March 2015, 116 (25.4%) babies were discharged against medical advice. Fifty of these 116 babies residing within 50 kilometers of the hospital were selected randomly using software, namely, WINPEPI. However, the purpose of ran-domization was just to ensure that the interviewers do not select only villages in close vicinity of the hospital.
Parents of these 50 selected babies were contacted and in-depth interview was conducted at their homes based on an interview guide (Appendix). As per the legal system, one of the parents has to be present during the DAMA process and most of the times they are the primary caretakers. A team of three persons (one dedicated member from the investigators with any two pediatric postgraduates from the hospital) participated in conducting the interview. The dedicated person conducted all the interviews while the postgraduates wrote down the necessary details. Audio was recorded if consent was given for the same. The parents (both mother and father) were invited to participate and were provided with the contact details of the interviewers so that they could ask for deletion of the any part of audio/interview during the study. In 13 interviews, both parents were present and provided their insights into the DAMA process but it was considered as a single in-depth interview. Basic demographic data were also recorded and clinical profile of the child was extracted from hospital records. The details regarding the financial help to the patients were obtained from the records of the patient relation office (PRO) of the hospital.
The recordings were manually transcribed by one of the investigators. Each transcription underwent an additional review for accuracy by one of the investigators other than the original transcriber.

Statistical Analysis.
Descriptive statistics [mean (SD), frequency (%)] were used to depict the clinical profile of the babies as well as sociodemographic profile of the parents. Chi square test was used to assess the association of discharge against medical advice with sociodemographic variables. All the quantitative analysis was performed using STATA (14.2). Qualitative analysis of the transcriptions was manually performed to understand various aspects of DAMA. Common threads emerging out of the in-depth interviews were elaborated.
The Institutional Ethics Committee approved the study.

Results
Out of the parents of 50 babies approached for in-depth interview, five changed their residence and two audio recordings were incomplete mainly due to nonwillingness of parents to talk about the reasons for discharge against medical advice. Further parents of two babies took discharge against medical advice almost immediately after the admission and hence the clinical and PRO related information was not available. Thus 41 in-depth interviews were completed and analyzed ( Figure 1). Although significantly more males (298) were admitted as compared to females (158), no difference in the proportion of males who were discharged against medical advice as compared to females (8.59% versus 7.60%, = 0.7) was noted. Similar observation was noted for inborn versus outborn babies (7.1% versus 9.3%, = 0.4) as well as BPL versus non-BPL categories (7.4% versus 8.8%, = 0.6). One-third of the babies (34.1%) were discharged against medical advice on the first day of admission.  Sepsis, birth asphyxia, respiratory distress, and congenital heart disease were the most common diagnostic related groups in babies discharged against medical advice (Table 1). While nonaffordability emerged as the most common reason contributing to the decision of taking discharge against medical advice, inappropriate behavior of the staff (especially PRO staff) and feeling of hopelessness due to poor prognosis and current condition of the baby also contributed to the unwarranted decision. Lack of facilities for relatives was also reported by few parents (Table 2).
Theme based excerpts from the in-depth interviews are presented below in patients'/guardians' own words removing slang that was used occasionally.

Nonaffordability
P-"That we have already told you. Money, nothing else. They asked for 10,000 rupees per day. How do you think we could pay that much! We don't have that much money." P-"Reduce cost. Keep discounts in bills. Quicken the treatment."

Discussion
This study noted high prevalence (25.4%) of DAMA in NICU.
One-third of the babies (34.1%) were discharged against medical advice on the first day of admission. No gender bias was observed related to DAMA. Infections and asphyxia were the most common clinical conditions and affordability and prognosis were the most common reasons for babies discharged against medical advice. A review of studies conducted in Iran revealed that the prevalence of DAMA varies from 4% to 35% in different clinical departments [14]. The DAMA rates are reported to be low (1% to 5%) in pediatric departments [6][7][8][9][10][11]. It appears that the study setting, sociocultural factors, time of study, and region have an impact on the DAMA rates. Although there is scarcity of such studies in neonates, all of these studies indicated that DAMA rates are higher in neonates. Interestingly, one-third of the patients were discharged against medical advice on the first day of admission. Similar observation was noted in other studies [7][8][9][10][11][12][13].
The current study revealed that infections and asphyxia were the most prevalent diagnoses. This finding corroborates with other studies in pediatric [7,9,11] as well as neonatal populations [12,13].
Nonaffordability and feeling of hopelessness emerge as the main factors contributing to discharge against medical advice while serious communication gap has cascading effect as noted in studies conducted in developing economies [6][7][8][9][10][11][12][13]. In fact, few studies made a case for universal health coverage through National Insurance Scheme and improving counseling services.
From providers' perspective, patient's lack of insight, communication, mistrust, and conflict may lead to DAMA [15] but in general pediatricians showed empathy and positive attitude towards patients whose parents request discharge against medical advice [16]. Communication, informed consent, and underlying psychiatric issues are endorsed in practical management of DAMA [17]. In general, DAMA is a complex issue and the solutions must be sought considering sociocultural and environmental background.
While the Indian health system was working well in early years after independence, the focus on family planning in the late 70s destabilized it and emergence of private providers inflated the costs albeit with somewhat improved quality of care [18]. Admitting the disparity in healthcare in 2002 [19], Indian Government launched National Rural Health Mission in 2005 with many schemes to improve healthcare in India [20].
Catering specifically to newborns, home based and facility based newborn care models were introduced that were partially successful. For example, Bal Sakha (Child's Friend) scheme was launched in Gujarat in January 2009 to facilitate expert care to newborns. A fixed amount of about 30 USD was offered to take care of a baby. The study site immediately accepted the scheme but terminated the same due to huge losses incurred. A study conducted at the same site revealed that the average cost of hospitalization in children admitted to pediatric intensive care unit was about 200 USD [21]. At the minimum, the Bal Sakha scheme should have reimbursed the hospital on the basis of Diagnosis-Related Group (DRG) to make it sustainable.
To enhance community participation and access to the healthcare system, NRHM developed a workforce of community health worker, namely, Accredited Social Health Activist (ASHA). Home Based Newborn Care guidelines were released in 2011 and updated in 2014 [22]. ASHAs were trained in essential newborn care through modules 6 and 7 [23]. Unfortunately lack of monitoring, supportive supervision, and infrastructural facilities could not empower ASHAs sufficiently [24].
Indian health system needs a total revamp to ensure health coverage to all. It is possible through an integrated national health system focusing on public primary care system leveraging private sector in a regulated manner [25].
From hospital's perceptive, it is evident that there is some serious communication gap between the parents and staff especially the PRO executive. The possible reason could be isolated counseling by technical experts (physicians) and PRO executives. Creating adequate facilities for relatives is a minor administrative issue, ignored for a long time. Realizing the fact that NICU admission can ruin the budget of even middle class families, the study site started extending all the discounts available to BPL families, to those whose income is less than 10000 Indian rupees (∼150 USD).

Limitations
This is a single-center study and as evident from other studies the reasons for DAMA vary depending on sociocultural and environment issues. The efforts to prevent DAMA may not be generalizable beyond the region.

Conclusion
The issue of DAMA needs attention. Hospital policy reforms including proper and timely communication with empathy and sensitivity, orientation of PROs towards NICU, and enhanced infrastructural facilities for the attendants may be explored. The central and state governments should extend adequate financial support through flexible and carefully designed schemes catering to newborns.