PDF Summary:On Death and Dying, by Elisabeth Kübler-Ross

Death is often treated as a taboo subject in modern society, leaving many people unprepared to face their own mortality or support loved ones through the dying process. In On Death and Dying, psychiatrist Elisabeth Kübler-Ross presents a framework for understanding how people process terminal diagnoses. Her work identifies five psychological stages that dying patients commonly experience: denial, anger, bargaining, depression, and acceptance.

Kübler-Ross explains how each stage manifests and emphasizes the role of hope throughout the dying process. She also provides guidance for medical professionals and caregivers on communicating openly with terminally ill patients, respecting their wishes, and providing dignified care. The book addresses how society's avoidance of death-related conversations affects both the dying and their families, and argues for a more honest, compassionate approach to end-of-life care.

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While the person nearing death is now at peace and accepting of their fate, their circle of interest diminishes. They prefer solitude or at minimum to be undisturbed by external issues and news. Guests aren't typically welcome, and if they do visit, the patient might not want to converse. They frequently request a cap on visitors and favor brief visits.

(Shortform note: While Kübler-Ross suggests that a dying person’s circle of interest diminishes, some researchers have found that “not being alone” is one of the most important factors for a good death. If this is the case for a dying person, they may welcome frequent, extended visits until the end. This is one of the findings of a study that asked patients, family members, physicians, and other care providers to rank the importance of various factors at the end of life.)

Psychological Processes & Supporting Concepts

The Role of Hope in the Dying Process

Hope is essential for patients with incurable conditions, according to Kübler-Ross. It transforms into something not tied to extending life. Hope helps patients endure their suffering, giving them a sense of purpose and uplifting their spirits.

Patients appreciate physicians who make space for hope, even if it’s unrealistic. They feel more confident in these doctors and don’t sense abandonment. If a patient ceases to show hope, it often indicates that death is near.

(Shortform note: Encouraging unrealistic hope can have negative consequences for patients with incurable conditions. For example, patients who maintain unrealistic hope may delay enrolling in hospice care, which can leave them and their families unprepared for the final stage of life. This can lead to a lack of emotional and practical preparation for death, causing additional stress and anxiety for both patients and their loved ones.)

Practical Applications of Kübler-Ross's Framework

In this section, we’ll discuss how to implement humane patient care and consider the wider context of mortality.

Implementing Humane Patient Care

Kübler-Ross believes medical staff should respect the wishes of patients who are terminally ill and provide care that honors their dignity. They shouldn't exploit patients to meet their needs when patients' desires differ from theirs. Instead, they should listen to and consult with those who are mentally sound and able to decide for themselves. If a patient’s wishes differ from the medical staff’s beliefs, the staff should be transparent about this conflict and let the patient make the decisions.

(Shortform note: Kübler-Ross’s ideas don’t apply in situations where a patient’s wishes are outside the bounds of what’s considered acceptable medical practice. For example, a patient may request a treatment that’s illegal in their state, such as euthanasia. In this case, the medical staff can’t honor the patient’s wishes, even if they’re mentally sound and able to decide for themselves.)

They should also recognize the patient's insistence on communicating as soon as possible and be willing to share some of the person's concerns. Kübler-Ross adds that medical staff should examine their perspectives on death and dying to sit calmly and comfortably with someone who is terminally ill. They should inform the patient that they won’t leave if the words "cancer" or "dying" are spoken. Patients will then notice this cue and share, or they might inform the staff that they value the communication even if the moment isn’t right. The patient will let the staff know when they’re ready to share their concerns, and the staff can reassure them of their future availability when it's appropriate.

Cultural Differences in Discussing Terminal Illness

In some cultures, doctors would disagree with Kübler-Ross’s advice to tell patients that it’s safe to say "cancer" or "dying." For example, Antonella Surbone, a medical oncologist and bioethicist, describes her experience working in a Japanese cancer clinic where doctors didn’t tell patients they had cancer. He explains that in Japan, doctors and families believe that telling patients they have cancer would take away their hope and cause them unnecessary suffering. Instead, they use vague terms like "tumor" or "growth" and avoid discussing the possibility of death. Surbone notes that this approach is based on the cultural value of protecting patients from distressing information, even if it means not being completely honest with them.

Next, let’s explore how doctors and caregivers can best interact with patients.

Direct Patient Interaction

According to Kübler-Ross, doctors need to communicate openly and empathetically with people about their state of health. Patients usually know when they’re seriously ill, even if no one tells them outright. They can sense it based on how people treat them. If they're not informed of the facts, they may lose trust in their doctor.

Therefore, doctors should be honest with patients about their condition, but they should also be sensitive to the patient’s readiness to hear the news. They should offer hope and ensure they won't be abandoned and that treatments are available. This helps patients cope with their circumstances and trust their doctor.

Cultural Differences in Disclosing Terminal Illnesses

While Kübler-Ross advocates for doctors to be honest with patients about their state of health, some researchers note that this isn’t the case in all cultures. For example, in traditional Japanese families, doctors are expected to discuss a patient’s state of health with their relatives rather than the patient themselves. This is because Japanese culture values harmony and avoiding conflict, and direct disclosure of a terminal illness is seen as potentially disruptive to the patient’s peace of mind. Instead, families often prefer to shield the patient from the full extent of their condition, believing it’s more compassionate to allow them to maintain hope and avoid unnecessary distress.

Caregiver Support & Training

Kübler-Ross also suggests that caregivers should be trained to communicate openly with patients who have terminal illnesses. They often avoid doing so because they feel uncomfortable, citing that a family member is present or that a doctor ordered it as a reason. However, open communication can aid in patient relaxation and assist caregivers in better comprehending what they need.

(Shortform note: Since Kübler-Ross’s time, research on end-of-life communication has led to the development of protocols for training caregivers to communicate openly with patients who have terminal illnesses. For example, Baile et al. (2000) developed the SPIKES protocol, which provides a framework for delivering bad news to patients. The authors argue that delivering bad news is a clinical skill that can be learned and that using a structured protocol like SPIKES can help clinicians communicate more effectively with patients and their families.)

The Wider Context of Death & Dying

Kübler-Ross observes that modern society often avoids discussing dying, which can lead to unresolved grief. In the past, people were more likely to pass away at home, and children were included in conversations about death. This helped them feel less alone in their mourning and see dying as something natural. In contrast, today's society treats dying as a taboo subject, and children are often excluded from discussions about it. This can lead to unprocessed sorrow and feelings of distrust toward adults.

How Death Became a Taboo Subject

In Western Attitudes toward Death, historian Philippe Ariès argues that over the course of the nineteenth and twentieth centuries, the management of dying passed into the hands of physicians, hospitals, and funeral professionals, so that the event of death was transformed from a shared social ritual into a technical and institutional procedure controlled by experts. This transfer of authority, reinforced by bureaucratic regulations and a cultural emphasis on youth, health, and productivity, progressively removed death from ordinary public life and turned it into something hidden, discreet, and in a sense “forbidden” in modern Western culture.