Introduction

Parents experience unimaginably intense painful emotional and social crisis during the death of their child [1]. Most of them have lifelong or long lasting impact of the event, irrespective of the cause of death [1]. Additionally, the parents also undergo immense anxiety and psychological and physical stress during the serious illnesses, when things don’t look better [2]. During the terminal phases of illnesses, several times they are confronted with the unknowns and are challenged to make difficult decisions, e.g. initiation or withdrawal of life-support measures, referrals, finances, etc. [3] Care of the child during serious and terminal illness is most challenging for the parents. The healthcare providers (HCPs) also undergo stressful situations while dealing with the seriously sick or terminally ill children [4, 5]. Breaking bad news including prognostication and death declaration are challenging situations for the treating doctors, which almost all doctors face in their clinical practice. Breaking the news to the parents and family that their child is anticipated to die prematurely is one of the most difficult aspects of child healthcare.

The efforts, attitude, behaviour and communication by the HCPs have impact on the acceptance and response from the parent and family. While in majority of the instances, the parents and family accept the bad news, there are instances of unpleasant reactions and violence against the HCPs and hospitals [6]. A study from India reported families dissatisfaction with the services, miscommunication and ineffective communication and death as the important reasons following the non-availability of medicines, facilities and manpower challenges in healthcare services [7].

Support from the HCPs and hospital during the terminal event and after child death have positive impact on the parent’s long-term grieving outcomes [8]. The perceptions of parents and challenges faced during the terminal phase, especially for the children in intensive care unit (ICU) include loss of parental role, lack of physical contact and not being present with the their child during the terminal phase and ambivalence in decision making [9]. Reviews of articles on parents’ perspectives regarding the end-of-life care for their children have identified poor or lack of communication and information, strained relationships, inadequate emotional support, their desire to maintain parent-child relationships in life and death, quality of care (QoC), influence of services, and the difficult decisions to terminate life support, as the key themes [10, 11]. The common challenges identified in the studies were insufficient communication, lack of respect and lack of emotional support for parents [9–11].

Several frameworks and models for breaking bad news have been proposed [12, 13]. Patient-centred communication is most positively accepted and perceives the physicians as most emotional and least dominant while breaking bad news [14]. Thus, it is essential for the clinicians to understand the parent’s experiences around the serious illnesses including the end-of-life and their needs to provide good QoC. These end-of-life and death declarations have implications for success of the after-life activities like organ donation and autopsy or minimally invasive tissue sampling (MITS) for establishing the exact causes of death, when needed. The post-mortem MITS is a suitable alternative for complete diagnostic autopsy for establishing cause of death across all ages [15–17].

A pilot project on MITS to identify causes of child death and stillbirths was initiated in India. To gain insight about the events around child death and stillbirths, a formative research explored the perceptions of the parents and HCPs regarding the end-of-life care and death declaration for children and also observed the death declaration processes. The findings were used to inform the consent process for MITS. This article presents data from the formative research and focuses on the perceptions and experiences of the parents of deceased children and HCPs regarding the end-of-life communication including death declaration to inform the clinical practices.

Methods

Results

From households of 25 deceased children (12 neonates and 13 children), 49 parents and 21 family members (mostly grandparents) participated. Sixteen HCPs (equally from paediatrics and neonatology units) also participated in the study. Table 1 shows the characteristics of the participants participated and observations included in the study.

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Table 1. Characteristics of the study participants.

https://doi.org/10.1371/journal.pone.0248661.t001

Inductive data analysis identified six overarching themes: (1) communication during hospital care; (2) process of death declaration; (3) respect and dignity for patient’s family; (4) emotional support for family; (5) experience of services and care received; and (6) experience of the HCPs. The findings along with the illustrative statements from participants are presented below. The coding tree for these domains is attached as supplementary document (S4 File).

Discussion

This qualitative study provides valuable perspectives of the experiences of the parents and family who lost their children at the hospital and also of the HCPs who served them regarding the end-of-life communication. The study supplemented and triangulated the responses from different respondents and through observation of the end-of-life and general communication.

While the parents of deceased children perceived the attitude and communication by the senior doctors to be empathetic and appreciative, the behaviours and communication of resident doctors as blunt, inappropriate, insensitive and sometimes negative. Although majority of the parents had no serious dissatisfaction, some expressed unhappiness with the behaviour and languages used by the nurses. The death declaration made by the resident doctors was recalled as non-empathetic, blunt and cold. Majority of the parents had relatively neutral opinion about the interpersonal relationship with the HCPs, but few had unpleasant experiences during the hospitalisation period. The challenges in communication of the child’s status and prognostication were observed, which could have been augmented due to the language barrier. Most of the parents received no emotional support after death declaration. The parents perceived the doctors to be under pressure due to workload and need communication training. Death of the patient(s) affected the doctors, more the resident doctors and they were learning to cope with the situation. The end-of-life event observations also supported the expressions and challenges expressed by the parents and the HCPs. Overall the setting with overcrowded wards, overstretched HCPs and limited infrastructural facilities were putting stress on the HPCs and also patients.

Patient satisfaction evaluation is considered as a key aspect of QoC, but mostly used for the patient getting discharged, not for the deceased patients. The caretakers/family experiences related to end-of-life care and death are also important component of QoC, which must be explored to refine the services.

The end-of-life communication and supports (emotional, physical and instrumental) provided by the HCPs and the hospitals have an important impact on the experience and coping of the grieving parents. The views and suggestions from the parents and family on the experiences, care and assistance received during this critical phase would be useful to guide the doctors, nurses and hospital administration and the relevant policy makers to bridge the gaps for improving the services. The end-of-life care, breaking bad news and death declaration issues have been explored from various aspects for the chronic diseases, and cancers and more among adults. There are few studies related to these aspects related to the death in children, especially with the acute diseases.

Although the patients from diverse socioeconomic, language and educational backgrounds are treated at the study hospital, most speak and understand Hindi (locally spoken language). The resident doctors and nurses come from different parts of India with diverse sociocultural and language background. Thus, the pronunciation and use of Hindi words by them might be different than local dialect. The doctors are primarily responsible for delivering the bad news and death declaration. The communication skills, facing the family and handling emotions during difficult times are not part of the medical training and generally clinicians are poor at these. The studies from various parts of the globe, both developed and developing countries have reported the communication challenges faced by the clinicians [3, 4, 9, 19–23]. A report indicated that 35% of pediatric residents in India were comfortable in breaking bad news and 16% only received any training [24].

An enquiry for the end-of-life communication and breaking bad news for dying children in an Indian hospital identified preparing the families, using simple languages, doctor-family rapport and parent education status as critical issues. The doctors in the study considered themselves more attached to the paediatric patients than adults. They were aware about the families reacting differently to the child deaths according to the age and gender. The doctors perceived that unavailability of facilities (ICU bed and ventilators) led to deaths, which affected their emotional status. The doctors have been coping with the situation through clinical care and engagements in recreational activities. The doctors perceived the physical clinical care as their responsibility and the psychological care to be outside scope and feasibility. The resident doctors felt high patient load, long working hours, no training in communication and no formal psychological support as the challenges [19]. A study from Pakistan explored the causes of violence against HCPs. The HCPs from different categories perceived impatience, lack of respect towards HCPs, unrealistic expectations from HCPs and hospital as the client related factors and bad attitude of HCPs towards patients and caretakers, lack of timely communication, inability to counsel caretakers and prepare for undesirable outcomes as the provider-related factors for the violence against HCPs [6]. The Italian parents perceived that their role as parents and the physical intimacy were compromised during the PICU period. They were willing to be with their child and continue care throughout in the PICU including the dying processes, which were prevented by the HCPs. They also reported the need of space and opportunity for family intimacy during the critical times [9]. A study from Switzerland identified differential experiences among parents regarding end-of-life care according to the underlying diseases. While parents of children with cancer rated their experience as highest, the parents of children with neurological illnesses rates as lowest. The parents of the neonates reported shared decision making as key challenge. The key negative experiences reported were support for the family and communication [3]. The findings from our study are similar to the observations from other countries.

Studies have observed that the emotional and cognitive care, empathic attitude of the HCPs are more effective in management and improves patient’s treatment compliance [25, 26]. A systematic review found that according to majority of the parents the nurses provided better emotional support to them, but few studies noted parent’s disappointment about interactions with nurses. The parents reported the doctors to be cold, neural, less helpful and supportive than the nurses. The key factors for dissatisfaction included lack of communication and emotional support and insensitive comments. Some studies reported the parents appreciating the emotional, physical support and time spent by the HCPs during the distressing times [27]. A meta-synthesis found that during the end-of-life care and decision making, the parents found lack of communication and culturally sensitive information and sometimes depend on secondary sources like internet for resources. The parents wanted receiving honest, clear and complete information including the uncertainties in simplified language, but blended with hope (not false hope), compassion and sensitivity [28]. Our findings also reflect similar themes regarding the end-of-life care and death declaration by the doctors and support provided by the HCPs and institution to the parents and family.

The role of doctors and nurses in the end-of-life care including, their attitude and communication style are critical for the patients, parents and family [29, 30]. The doctor’s cool, detached and neutral posture might be considered as evasive, cold, and non-empathetic by the family and may be counterproductive when they need empathy. The doctors may feel powerless, ineffective and helpless at times of these crisis and seek blocking behaviours to immunize himself from the potential distress [31, 32]. Assessments have observed poor competency among the resident doctors in delivering bad news and limited understanding of the patient’s perspective [21]. In a study in South India, 71% of the doctors identified breaking bad news as the top priority core competency area in communication [33]. The doctors, especially the younger resident doctors reported to have death anxiety, stress related to care of dying patients and death declaration [34]. Lack of proper training for the doctors, nurses and other HCPs leads to emotional disengagement from the patients and their family [19, 35]. While good communication has positive therapeutic effect, bad communication may lead to detrimental outcomes. The medical and nursing curriculum didn’t provide adequate skill building in communication and crisis handling till now. Recently Medical Council of India has included comprehensive AETCOM (attitude, ethics and communication) module in pre-service curriculum of medical graduates [36]. Similar efforts are needed for the in-service and postgraduate courses for healthcare providers. Structured training programs through contextualised lectures, group discussions, role-playing, simulations and real-life coaching can build skills. Additionally, psychological support and institutional efforts for decreasing the HCPs anxiety and stress from uncertainties can improve their attitude and better prepare them to provide end-of-life care. A review observed that despite increased focus of the medical training on physician-patient interactions, the doctors were viewed as less supportive [27]. The family directed interventions have higher focus on bereavement support than enabling the compassion and support from the HCPs [27]. According to The Institute of Medicine, the HCPs engaged in childcare need skills in end-of-life, bereavement and palliative care, as part of the curriculum and continuing education using model curricula [37]. Several studies have stressed on importance of cultural and context appropriate patient-centred communication in improving patient satisfaction and psychological well-being [38, 39]. The medical schools and hospitals providing paediatric and obstetric care need standard socioculturally appropriate written and communication protocol using simplified language and training for all the HCPs engaged in childcare. Communication training models are being attempted targeting the trainee doctors [33], but it needs to be standardised and contextualised. The parents and family may experience variably the five stages of grief including denial, anger, bargaining, depression and acceptance, based on the type of illness, duration, type of care, and several other influencing factors [40]. The textbooks and communication training in medicine and nursing education need to include these along with appropriate counselling methods.

The inclusion of different categories of the HCPs and triangulation using the observation of end-of-life care were the strengths. The study had some limitations. The results reflect the perspectives and practices of the HCPs at one hospital, which may be context specific and hence may not be generalizable to other settings, where the patient load and hospital resources including may vary. The purposive selection of the participants (parents and HCPs) and the experience of the parents who consented might be different from those who refused to participate, which could have biased the findings. The observations could have been influenced by the patient and parents characteristics including types of diseases, socioeconomic status, education, religion, etc. No validation of the findings were attempted.

Conclusion

This study found the experiences and challenges of the parents and HCPs regarding the end-of-life care and breaking bad news for the paediatric patients in north Indian context. The parents of deceased children expected empathetic communication and attitude from the HCPs, especially the doctors. The doctors, especially the residents with suboptimal communication competency, thin and overstretched staff strength and infrastructural limitations furthered the negative parent experiences. The end-of-life is a crucial situation and children, a special patient category, make the issue further complex for the family and the HCPs. While there is increasing attention to QoC and patient-centred care, there is need for improving the end-of-life care for paediatric patients through better integration of medical and parental priorities with provision of psychological and physical support. Future efforts need to design sociocultural, context and task specific modules for the different HCPs (doctors, nurses and support staffs) and document the impact of their implementation through various channels on the experiences of the family and HCPs about the end-of-life care.

Supporting information

Acknowledgments

We acknowledge the participation of the parents and community members for their contribution. We appreciate the participation and support from paediatricians, obstetricians, residents, nurses and record section officials of VMMC and Safdarjung Hospital, New Delhi in conduct of this study. We highly value the guidance from the Technical Advisory Group members, Dr Siddarth Ramji, Maulana Azad Medical College, New Delhi; Dr Gagandeep Kang, Translational Health Science and Technology Institute, Faridabad, Haryana; Dr Sunita Saxena, National Institute of Pathology, New Delhi; and Dr Yogesh Jain, Jan Swasthya Sahyog, Bilaspur, Chattisgarh. We acknowledge the cooperation from the co-investigators: Dr Usha Agrawal and Dr Fauzia Siraj, National Institute of Pathology (Indian Council of Medical research), New Delhi; Dr Pratima Mittal, Dr Rajni Gaind, Dr K.C. Agarwal, Dr Archana Kashyap and Dr Manisha, Safdarjung Hospital and Vardhman Mahavir Medical College, New Delhi. We also acknowledge the support from other INCLEN team members including Deepak Singh, Vinod Kumar, Chandan Singh, Amit Kumar, Bablu and Rajender. We appreciate the technical assistance received from CHAMPS project team members.