Reflective Learning from Do Not Intubate/Do Not Resuscitate Conversations: A Qualitative Study Using Gibbs Reflective Methodology and Focus Group Discussion

INTRODUCTION

Patients (adults and children alike) and their families dealing with life-threatening disease burden can live better with the help of palliative care. Palliative care prevents and lessens suffering through early detection, accurate diagnosis and treatment of pain and other symptoms, whether psychological, spiritual or physical.^[1] Each year, an estimated 56.8 million people, including 25.7 million in the last year of life, needed palliative care.^[2] Worldwide, only about 14% of people who need palliative care currently receive it.^[2]

Chronic illnesses such as cardiovascular diseases (38.5%), cancer (34%), chronic respiratory diseases (10.3%), acquired immunodeficiency syndrome (5.7%) and diabetes (4.6%) account for the bulk of adult patients requiring palliative care. Palliative care is also necessary for a wide range of other disorders such as congenital defects, multiple sclerosis, kidney failure, chronic liver disease, Parkinson’s disease, rheumatoid arthritis and neurological diseases.^[3]

Palliative care includes end-of-life or terminally ill patient care.^[1] Patients receiving palliative care, particularly those who are terminally ill or close to death, frequently must decide whether to use mechanical ventilation. When there is indecisiveness among the family members, communication with the family members by the health care professionals on initiating the do not resuscitate (DNR) or do not intubate (DNI) order might become strenuous, unpleasant and emotionally draining on both sides. A sequence of life-saving procedures for patients experiencing sudden cardiac arrest is known as cardiopulmonary resuscitation (CPR).^[4] Guidelines mandate that if a patient lacks a DNR order, they must initiate CPR within 60 sec and administer defibrillation within 3 min.^[5] DNR orders prohibit performing basic CPR, advanced CPR (which involves defibrillation and medication) and chest compressions with or without concomitant ventilation.^[6] A ‘Do Not Intubate’ or DNI order permits the administration of cardiac medications and chest compressions but prohibits the placement of a breathing tube.^[7] Patients with serious illnesses or those whose cancer has progressed beyond treatment, however, do not benefit from intubation and resuscitation.^[8] Palliative care emphasises quality of life. The World Health Organization defines quality of life as an individual’s subjective assessment of their living environment, including their aspirations, norms, expectations and worries.^[6] It is crucial to have a conversation about DNI and DNR with patients who are terminally ill.

The DNI/DNR discussions should improve the quality of care without further increasing the symptom burden. The DNI/DNR discussion is a convoluted process of communication. Factors affecting the patient include their family, values, emotional anguish and disease status.^[9] Personality, autonomy, supportiveness and a focus on the needs of the patient are among the physician factors.^[10] Physicians who suffer from emotional anguish find it difficult to discuss death, dying and DNI/DNR orders.^[11]

Resident physicians’ clinical experience frequently contradicts their academic curriculum and they may be ill-equipped to handle end-of-life (EOL) decision-making and might misread patients’ wishes.^[12] Research focuses on the DNI/DNR experiences of the patient and the caretaker. Little is known about the physicians’ experiences while taking the DNI or DNR consent from patients or their families. This study focuses on reflective methodology and focus group discussions (FGDs) to learn more about the various experiences of taking DNI and DNR orders. Most of the reflectivity’s application is in qualitative research, where it serves to validate and justify study methods.^[13] There are various techniques and strategies for writing reflections, such as Gibbs and Kolb’s approaches. An FGD involves gathering people from similar backgrounds or experiences together to discuss a specific topic of interest. There is discussion about the perceptions, attitudes, beliefs, opinions or ideas between the participants in this form of qualitative research. Typically, group interviews, providing a platform for a small group of 6–12 individuals to express their opinions, are provided in an FGD.^[14]

The primary objective of the study is to describe the reflections on the experience during conversations on DNI/DNR with the family members of the patients referred for palliative care and to describe conversations with other medical speciality trainees through an FGD on DNI/DNR to improve learning through self-reflection.

MATERIALS AND METHODS

Study design-qualitative study

Sampling and recruitment

Reflective methodology

Gibbs’s reflective cycle is one of the most well-known cyclical models of reflection which provides a structure to learn from experience. This model provides a better framework as a technique for reflecting on an experience which can be either a standalone experience or a recurring situation such as regular meeting with a team we collaborate with. While Gibbs initially suggested its use for repeated experiences, the stages and principles are equally applicable to singular events. In a standalone experience, the action plan might be more general, focusing on how the insights gained can be applied in future situations.^[15] The five phases of Gibbs’ reflective cycle [Figure 1] assist in analysing events and drawing lessons from them. Gibbs’s five-step model includes description, feelings, evaluation, conclusion and action plan. Gibbs’s reflective theory pushes individuals to analyse their feelings and ideas to develop self-awareness. This approach enhances learning from the experience.^[16]

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Figure 1: Gibbs reflective cycle tool.

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DNI/DNR conversations were done with family members of patients with advanced disease and very poor prognosis above 18 years of age who had not given DNR and DNI consent and excluded family members of patients who had already given consent for DNI or DNR. The investigator reflected on the DNI/DNR conversations with the family members of patients using the Gibbs framework.

FGD

FGD with other post-graduate trainees was conducted to validate the investigator’s reflections on DNI/DNR conversations with family members. Six post-graduate medical trainees (mainly 2^nd years) participated in an FGD. The PGs were chosen based on those who had consented to the discussion. The PG trainees who participated in the study were from Oncology, Palliative Medicine and Geriatrics.

This study was conducted over a 2-month period.

Data collection

Reflective methodology and FGD

For reflective methodology, there was no audio or video recording of the conversations between family members and the investigator. Conversations with family members were carried out using Topic Guide 1 [Supplemenatry Annexure 1] and its reflection was done with Gibbs reflective cycle tool [Supplemenatry Annexure 2] immediately after the conversation. The Gibbs cycle has five-steps and each step has different sub-questions. After each conversation, these questions were answered and reflections were carried out by the investigator [Figure 2]. For FGD, the investigator obtained informed consent from six post-graduate medical trainees. The FGD was done with Topic Guide 2 [Supplemenatry Annexure 3] and audio recorded. It was then transcribed and data were familiarised, codes were generated, categories were developed, and themes were identified through thematic analysis [Figure 3].

Supplemenatry Annexure 1

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Supplemenatry Annexure 2

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Supplemenatry Annexure 3

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Figure 2: Reflective methodology. DNI: Do not intubate, DNR: Do not resuscitate.

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Figure 3: Focus group discussion.

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RESULTS

DNI/DNR conversations were conducted with family members of five patients. A total of five conversations, involving five families, were included using purposive sampling. The following are the findings from the Investigator’s Reflections on five conversations.

DISCUSSION

In palliative medicine, the principles of patient autonomy, informed consent and compassionate care are paramount. Two critical components in the realm of end-of-life care are DNI and DNR orders. These directives are essential tools that guide healthcare providers in aligning medical interventions with the patients’ preferences and overall care goals.

DNI/DNR conversations vary with different patients. Reflections help us to examine from the experiences and learn from them. In this study, most of the results obtained from the self-reflection and FGD were similar.

Gibbs Reflective Cycle was employed in this study as a method to analyse the investigator’s reflection of the conversational experience. Upon analysis, it was discovered that the patient’s family members were not informed of the severity of the patient’s illness, which led to unpleasant conversations about the disease’s course and prognosis. This highlights the need for regular updates on prognosis so that DNI/DNR conversations become easier. Early initiation of DNI/DNR discussions is a cornerstone of patient-centred palliative care. It allows patients to make informed decisions and reduces the burden on families.^[18] Various communication barriers like interruptions during conversations which will hinder the flow of the discussion should be addressed. It is important to orchestrate the conversation in a peaceful and calm environment where interruptions are minimal or nil. Being mindful and focused fully into the conversation is imperative.

It is important to prioritise these conversations, employing clear communication, education and an interdisciplinary approach to support patients and their families through these critical decisions. Patients and families need time to understand complex medical information, weigh the benefits and burdens of interventions and make informed choices that align with their values.^[19] Early initiation of DNI/DNR discussions helps the patients and families to exercise the above-mentioned decisions or activities in a timely fashion and also helps to prevent hasty, stressful decision-making during medical crises when emotions are high and clear thinking can be impaired.^[19]

The patient’s current health condition and the stage of their illness significantly impact their readiness to engage in DNI/DNR discussions.^[20] Patients with advanced disease and elderly individuals with a poor prognosis may be more willing to discuss these options. Similarly, patients’ emotional and psychological readiness to confront end-of-life issues can vary. Some may need more time and support to process the information and make decisions.^[20] Financial limitations may prompt families to consider comfort-focused care earlier, especially when prolonged ICU care or invasive procedures are seen as burdensome. Participants perceived that educated family members were more accepting of DNI/DNR decisions. Healthcare providers’ skills in discussing end-of-life care, including their ability to convey complex information compassionately and clearly, are crucial. In a study conducted by Clayton et al., it was found that physicians had to initiate the discussion when patients and family members seemed ready, explore what they already knew and what they wanted to know and give them opportunities to discuss the future.^[21] Patients need information on medical procedures, outcome probabilities and the goals of care to make a decision.^[22] Providers with specialised training in palliative care tend to be more effective in conducting these discussions. The ability to empathise with patients and families, providing emotional support and addressing their fears and concerns, is essential for meaningful conversations. Some healthcare providers may feel uncomfortable discussing death and dying, which can hinder open and honest conversations.

In a study conducted by Gibbins et al., it was found that physicians needed teamwork for EOL communication with various healthcare professionals, such as nurses, psychologists and social workers, who could be aware of patients’ physical or psychosocial needs and manage the difficulties in discussion.^[23]

Access to palliative care services, support systems and adequate time for in-depth discussions are critical for effective DNI/DNR conversations. Time pressures in busy clinical environments can limit the opportunity for thorough, unrushed conversations. Dedicated time and settings for these discussions can improve their quality. In a similar study, it was inferred that family conferences were often used to improve communication and decision-making between patients and family members.^[24] Continuous education and training for healthcare providers on communication skills and end-of-life care can enhance their ability to facilitate these discussions effectively.^[25]

Beyond clinical facts and prognosis, families need to feel heard, understood and emotionally supported during one of the most distressing moments in their lives. Active listening to the family’s fears, cultural beliefs and emotions allows the healthcare team to build trust and rapport.

Acknowledging uncertainty and grief validates the family’s experience and helps them feel emotionally supported. A well-established rapport lowers emotional defences. Rapport allows clinicians to better understand the patient’s values, fears and expectations, enabling truly patient-centred care.

It ensures that the decisions made are patient-centred, reduce emotional distress and align with the patient’s values and wishes.^[26]

CONCLUSION

DNI/DNR conversations are difficult and vary with family members of different patients. Reflective practice and observation of experienced clinicians may enhance communication skills and confidence during difficult conversations. The findings support the incorporation of structured difficult-conversation training within postgraduate palliative medicine curricula. Formative and summative assessments during the curriculum will help trainees to handle these difficult conversations better.