Living for the Moment – How Important Is It in the End of Life?

Introduction

I had read When Breath Becomes Air by Dr Paul Kalanithi as a prospective medical student around 6 years ago but found myself revisiting it again 2 days before my final exams when I came across Dr Kalanithi’s wife, Lucy, announcing the deadline for a creative writing competition in his honour. It was then that I remembered Dr Kalanithi was a final-year resident at one of my elective destinations, the Department of Neurosurgery at Stanford, when he died of metastatic lung cancer in 2015. I found myself unexpectedly filled with an overwhelming sadness. Suddenly Dr Kalanithi wasn’t simply a godly figure who had braved lung cancer to complete his residency and qualify as a neurosurgeon. He was now reflected in the face of every resident I had the pleasure of meeting during my time at Stanford—the patient teacher allowing me to assist in wound closure after a long procedure, the hearty companion in the doctors’ office in the hollow depths of a night shift, or the caring reminder to take my lunch break and get some rest. His words now took the shape of a complete human figure and resonated with me more deeply than ever before, not only because our paths might have crossed in another life, but because it triggered a deeper reflection of my encounter with Mrs. B (a patient diagnosed with lung cancer) and her family.

I was particularly reminded of Paul’s final message to the reader, to all current and future physicians, and to his young daughter, imploring us to place more value on the potential joy we can bring to patients in their final days of life. This sentiment was especially important to Mrs. B, whose steadfast joy was her armour in her battle with cancer, formed by finding happiness in the ordinary and belief in the extraordinary. As a result, she seemed to cope with her diagnosis with firm optimism and lived for each day as it came.

Background

Mrs. B was a 63-year-old lady living with terminal squamous cell lung cancer who I met on an inpatient respiratory disease service during my Medicine placement. She was diagnosed in mid-2022 during a 2-week wait referral after visiting the GP complaining of extreme fatigue, weight loss, and a persistent cough 4 years ago, having been a heavy smoker for most of her adult life. Up until that point, she had never been diagnosed with any other chronic conditions and was healthy. Mrs. B’s CT scan at the time showed a single large tumour in the right middle lobe, which was initially treated with a right middle lobectomy followed by adjuvant radiotherapy. Her follow-up scans were initially clear, but she unfortunately relapsed towards the end of last year, and despite receiving 2 rounds of chemotherapy, her tumour persisted, grew progressively larger, and spread to multiple sites across both lungs. Early this year, it became clear to Mrs. B and her clinical team that she was unlikely to respond to any further therapy, so a shared decision was made to stop curative treatment attempts for the cancer and shift to symptom control and comfort care. On the occasion when I met her, Mrs. B was admitted for a severe lung infection, which was successfully treated with IV antibiotics, and she was recovering well.

Psychological, Spiritual, and Cultural Issues

The first thing that struck me about Mrs. B was her cheerfulness. As it was approaching lunchtime, I was wary about disturbing her. This worry dissipated as Mrs. B, sporting a colourful chiffon summer dress, warmly welcomed me into the room and encouraged me to ask as many questions as I needed. I told her I knew why she was in hospital but wanted to know more about her journey with her illness and how she felt about what might happen next. Noticing that I was hesitant to mention death, Mrs. B removed the burden from me and jokingly exclaimed she knew she was “going to die.”

Mrs. B obviously had a pure joie de vivre and immense resilience. When I enquired how she remained so positive despite the prospect of death, she replied that she had come to terms with her mortality. She also knew that, while she was relatively well now, she was becoming noticeably frailer and could deteriorate suddenly without warning—a possibility she had come to accept. Mrs. B had “lived a good, full life,” and for her, that was enough: Mrs. B had her first child as a teenager but worked hard to graduate from college (the first in her family to do so) and train as a paramedic. She and her husband had a second child together before he tragically passed away, also with cancer, leaving her to care for 2 young children alone while working a busy full-time job. Despite this, Mrs. B thrived in her career, serving 20 years in the ambulance service. She described another pivotal moment in her life came when her younger son tragically died unexpectedly. She realised that there was so much living she had yet to do, so many times she had said “maybe next month,” which inevitably became “next year,” until several years had passed without notice. She then adopted a mindset of making the most of each day. Much as she loved her job, she retired as early as she could afford to, bought a second home in sunny Marbella, and took to travelling the world with her partner (returning to the UK frequently to visit her son and his family). The joy she had because of, and in spite of, her life experiences seemed to be her superpower against the kryptonite that is the fear of dying.

If such joy can help patients reach a state of peace with their imminent mortality and can be derived from a “full and happy life,” I wondered what is needed to fulfil this judgement. Is it the fulfilment of dreams, like escaping from grey skies to a sunlit paradise, experiencing the ecstasy of holding one’s newborn for the first time, and witnessing their journey as they build their own family? Or perhaps it’s the satisfaction derived from scaling the peaks of one’s career ladder? The ancient Hindu scripture of the Bhagavad Gita underscores that a truly fulfilled life is one where we attain ‘dharma’—the fulfilment of our duties—ultimately leading to inner peace. Indeed, Mrs. B had spent her home and work life in diligent servitude to others. The Greek philosopher Plato suggested that to achieve happiness, “one should become immune to changes in the material world.” Does this mean that true fulfilment in life can only be gained by facing the treadmill of trials and tribulations life has to offer and emerging stronger than before? In Mrs. B’s case, it appeared to be a combination of both.

Beyond this, Mrs. B’s strength in the face of her illness and the prospect of dying also came from an unexpected source—her unwavering belief in the supernatural. Mrs. B explained that she was deeply spiritual, not in the traditional Judeo-Christian-Islamic sense, but had a deep personal belief in “angels.” She frequently found “feathers” in unusual places which were a sign that her guardian angel was communicating with her from heaven. Mrs. B had mostly found feathers that were white, a sign from her deceased loved ones (especially her son and husband). While lacking support from religious scripture or deep theological tradition, Mrs. B’s faith was nonetheless very strong and provided great comfort in her fleeting moments of fear.

However, when I asked if she worried about missing out on future events, particularly her son’s wedding, her composure faltered. This moment revealed unprocessed emotions beneath her sunny disposition, making me question whether her optimism was a genuine reflection of acceptance or a defense mechanism. According to Paul Wong’s Death Attitude Profile (DAP), ¹ Mrs. B exemplified “neutral acceptance,” where one accepts death as an inevitable part of life without fearing or desiring it. This perspective allowed Mrs. B to navigate the emotional landscape of her final days, yet the pain of missing significant life events lingered. Braun and Berg’s ² theories on loss also came to mind, suggesting that individuals’ responses to tragedy are shaped by their subjective beliefs. For Mrs. B, the impending loss of her life was not seen as tragic but rather a natural culmination of her existence. This led me to question whether, as doctors, we should probe deeper into patients’ emotions or allow them the space to process on their own terms. Mrs. B’s resilience reminded me of Martin et al’s ³ findings that centenarians often maintain optimism despite adversity. However, I also worried that forcing patients to confront harsh realities could rob them of the happiness that helps veil overwhelming sadness. Weisman’s ⁴ concept of “middle knowledge,” the simultaneous acceptance of death and engagement with life, was relevant here. Mrs. B seemed to oscillate between these 2 states, as described by Stroebe and Schut’s Dual Process Model, ⁵ balancing loss-oriented coping with restoration-focused activities. Another important consideration is whether patients hide their true feelings to avoid overburdening doctors. Ultimately, I believe it’s important to ask patients what they prefer to discuss and respect their boundaries.

Professional Matters

Mrs. B felt well-supported both medically and emotionally, appreciating the transparency with which her healthcare team communicated updates about her condition. She had a clear understanding of her prognosis and end-of-life care, including anticipatory medications and community care arrangements. Despite her earlier claim of “living for each day,” she valued being well-informed, likely due to her healthcare background and life experiences. Her knowledge gave her a sense of control, a mental coping mechanism she applied even to healthcare matters.

Additionally, Mrs. B made personal requests that the staff honored, such as having a small refrigerator and storage units in her room, which helped create a homely environment. This effort to preserve her identity and comfort during her long hospital stay highlighted the importance of considering patients’ preferences in palliative care. Hospitals, often perceived as sterile environments for medical treatment, can benefit from becoming spaces where patients undergoing frequent visits feel more at home. Witnessing the positive impact of this environment on Mrs. B emphasized the need to document patient preferences and cater to their emotional and personal needs, a sentiment echoed by literature on improving quality of care for palliative patients. ⁶

Mrs. B’s transition to community-based palliative care after her 6-week hospital stay marked a new chapter in her care journey. Though she remained largely independent, her worsening fatigue and shortness of breath signaled that her cancer would likely spread further. Over time, she would require more comprehensive care, including daily careers and equipment to assist with mobility. Mrs. B had not yet considered drafting an advance directive but was clear in her ‘ReSPECT’ form about her wishes regarding CPR and her desire to pass away at home with her family.

Though Mrs. B was aware of her care plan, her family had not yet been involved in these decisions. As her treating clinician, I considered whether it would be appropriate to initiate a group discussion with her family about their role in her ongoing care. I also questioned how physical deterioration would impact Mrs. B’s mental resolve and whether her joviality would wane with further illness progression.

Personal Reflection

Reflecting on my interactions with Mrs. B, I was initially surprised by her jovial attitude towards death. We are often trained to adopt a solemn demeanor when discussing end-of-life care, which made Mrs. B’s optimism disorienting. We had been taught to ‘match’ the patient’s tone, yet it felt strange in this case, perhaps because of societal conditioning that links palliation with sadness. Mrs. B’s outlook challenged my preconceived notions of palliative patients as languid figures nearing death. Her vitality reminded me that while death is inevitably dark, there is still light in celebrating a life well-lived.

I was reminded of the poem ‘Felix Randal’ by Gerard Manley-Hopkins, ⁷ wherein the speaker laments at the deteriorating health of the titular subject who was a close friend. Instead of solely emphasizing the tragedy of watching his loved one transform from being a “big-boned and hardy-handsome” farrier to a pale shadow of his former self, the speaker points out that “seeing the sick” makes life feel all the more precious, highlighting how interpersonal relationships are brief but wonderful gifts. As such, a sense of acceptance is reached through an appreciation of the virtues of death in its capacity to underscore the vibrance of life. Through its energetic remembrance of Felix Randal, the poem also subtly implores the reader to remember and celebrate the dead for who they were in life rather than ruminating on the negative aspects of illness and death – a sentiment Mrs B evidently shared.

This appreciation of life’s fleeting moments mirrored Mrs. B’s attitude, demonstrating how death can prompt a deeper appreciation of living. Mrs. B’s focus on her past hardships, rather than her future, was another element that challenged my understanding of palliative care. Much of our teaching in this field emphasizes future-oriented actions, such as advance care decisions and DNACPR forms. However, Mrs. B’s emphasis on her past resilience showed me that the coping mechanisms of patients can vary greatly.

Despite Mrs. B’s optimism, I found myself unintentionally pushing her to think about the future when I asked about her son’s wedding. Her reaction made me realize that even when patients seem strong, there may still be moments of vulnerability. As a clinician, I valued her strength and courage, as it made our interactions less emotionally taxing. Yet, this also made me reflect on the emotional toll of working with palliative patients. Physicians form unique bonds with patients through empathy and understanding, but this can lead to an emotional burden over time.

Learning Arising and Conclusion

My experience with Mrs. B taught me valuable lessons about how to care for palliative patients. Most importantly, I learned the importance of flexibility in communication, recognizing that not every patient will approach death with sadness or seek sympathy. It’s essential to gauge each patient’s attitude and tailor conversations to their preferences. As Epstein and Beach ⁸ suggest, physicians should practice “deep listening,” cultivating curiosity and openness to better understand patients’ needs.

Cultural differences in perspectives on pain and suffering also play a role in end-of-life care. Doka ⁹ argues that in Western medicine, pain is often viewed as something that must be eradicated. However, other cultural frameworks may offer different interpretations of suffering, which can inform how we approach palliative care for patients from diverse backgrounds.

Additionally, my encounter with Mrs. B shifted my perspective on the role of doctors in palliative care. As Dr Paul Kalanithi wrote, “life wasn’t about avoiding suffering,” and I realized that doctors can actively promote happiness, not just prevent suffering. Whether through conversations that maintain hope or minor acts of kindness that bring joy, these interactions can have a profound impact on patients’ well-being. Balancing this optimistic approach with managing patient expectations is crucial, especially when discussing the possibility of missing important life events.

Palliative and end-of-life care is nuanced and far from formulaic, unlike other medical specialties. There is no algorithm to follow or textbook page to consult when caring for terminally ill patients. Instead, we must listen carefully to each patient’s story and respond to their individual needs. By doing so, we can aspire to provide the “sated joy” that Dr Kalanithi believed patients cherish greatly.

In conclusion, my time with Mrs. B was a powerful reminder that palliative care is about more than just managing symptoms or preparing for death. It’s about understanding the complex emotions and coping mechanisms of each patient and providing care that respects their individual journey. By remaining open, flexible, and compassionate, we can help patients like Mrs. B navigate their final days with dignity and grace.