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Medical professionals will work with dying patients in all disciplines, and the process is difficult as care shifts from eliminating or mitigating illness to preparing for death. This is a difficult transition for patients, their loved ones, and healthcare providers to undergo. This activity provides paradigms for the process of moving toward death as well as a discussion of how they should and should not be applied, supporting the interprofessional team to address the unique needs of their patients and guide them and their loved ones through the process.
Objectives:Describe the five stages of death, as outlined by Elisabeth Kubler-Ross.Describe alternative paradigms for experiencing death and grief, in addition to those introduced by Kubler-Ross.Explain the potential underlying process generating these outwardly demonstrated stages to provide a context for supporting patients, families, caregivers, and healthcare providers experiencing death.Outline interprofessional team strategies for improving care coordination and communication in a dying patient.Access free multiple choice questions on this topic.
Medical professionals in all disciplines work with dying patients, and doing so effectively can be difficult. In the context of death and dying, patients, their loved ones, and the health care team must shift their goals. Where treating acute and chronic illness usually involves finding a tolerable path to eliminating or preventing the progression of a condition, treating terminal illness must involve preparing for death as well as efforts to mitigate symptoms.[1] Understanding the experience of dying and grief allows providers to support the unique needs of patients, their loved ones, and other healthcare team members.[2][3][4]
Dr. Elizabeth Kubler-Ross introduced the most commonly taught model for understanding the psychological reaction to imminent death in her 1969 book, On Death and Dying. The book explored the experience of dying through interviews with terminally ill patients and outlined the five stages of dying: denial, anger, bargaining, depression, and acceptance (DABDA). This work is historically significant as it marked a cultural shift in the approach to conversations regarding death and dying. Prior to her work, the subject of death was somewhat taboo, often talked around or avoided altogether. Dying patients were not always given a voice or choices in their care plan. Some were not even explicitly told about their terminal diagnosis. Her work was popular in both the medical and lay cultures and shifted the nature of conversations around death and dying by emphasizing the experience of the dying patient.[4][5] This led to new approaches to working with patients through the final phase of life. She highlighted the importance of listening to and supporting their unique experiences and needs and spurred new perspectives on ways practitioners can support terminally ill patients and their family members in adjusting to the reality of impending death.[6]
Kubler-Ross and others subsequently applied her model to the experience of loss in many contexts, including grief and other significant life changes. Though the stages are frequently interpreted strictly, with an expectation that patients pass through each in sequence, Kubler-Ross noted that this was not her contention and that individual patients could manifest each stage differently, if at all. The model, which resulted from a qualitative and experiential study, was purposely personal and subjective and should not be interpreted as natural law. Rather, the stages provide a heuristic for patterns of thought, emotions, and behavior, common in the setting of terminal illness, which may otherwise seem atypical.[7] Facility with these patterns can help health care providers provide empathy and understanding to patients, families, and team members for whom these patterns may cause confusion and frustration.[6]
Denial is a common defense mechanism used to protect oneself from the hardship of considering an upsetting reality. Kubler-Ross noted that patients would often reject the reality of the new information after the initial shock of receiving a terminal diagnosis. Patients may directly deny the diagnosis, attribute it to faulty tests or an unqualified physician, or simply avoid the topic in conversation. While persistent denial may be deleterious, a period of denial is quite normal in the context of terminal illness and could be important for processing difficult information. In some contexts, it can be challenging to distinguish denial from a lack of understanding, and this is one of many reasons that upsetting news should always be delivered clearly and directly. However, unless there is adequate reason to believe the patient truly misunderstands, providers do not need to repeatedly reeducate patients about the truth of their diagnosis, though recognizing the potential confusion can help balance a patient's right to be informed with their freedom to reconcile that information without interference.
Anger is commonly experienced and expressed by patients as they concede the reality of a terminal illness. It may be directed at blaming medical providers for inadequately preventing the illness, family members for contributing to risks or not being sufficiently supportive, or spiritual providers or higher powers for the diagnosis' injustice. The anger may also be generalized and undirected, manifesting as a shorter temper or a loss of patience. Recognizing anger as a natural response can help health care providers and loved ones tolerate what might otherwise feel like hurtful accusations. However, they must take care not to disregard criticism that may be warranted by attributing them solely to an emotional stage.[8]
Bargaining typically manifests as patients seeking some measure of control over their illness. The negotiation could be verbalized or internal and could be medical, social, or religious. The patients' proffered bargains could be rational, such as a commitment to adhere to treatment recommendations or accept help from their caregivers, or could represent more magical thinking, such as efforts to appease misattributed guilt they may feel is responsible for their diagnosis. While bargaining may mobilize more active participation from patients, health care providers and caregivers should take care not to mislead patients about their own power to fulfill the patients' negotiations. Again, caregivers and providers do not need to repeatedly correct bargaining behavior that seems irrational but should recognize that participating too heartily in a patient's bargains may distort their eventual understanding.
Depression is perhaps the most immediately understandable of Kubler-Ross's stages, and patients experience it with unsurprising symptoms such as sadness, fatigue, and anhedonia. Spending time in the first three stages is potentially an unconscious effort to protect oneself from this emotional pain. While the patient's actions may potentially be easier to understand, they may be more jarring in juxtaposition to behaviors arising from the first three stages. Consequently, caregivers may need to make a conscious effort to restore compassion that may have waned while caring for patients progressing through the first three stages.
Acceptance describes recognizing the reality of a difficult diagnosis while no longer protesting or struggling against it. Patients may focus on enjoying the time they have left and reflecting on their memories. They may begin to prepare for death practically by planning their funeral or helping to provide financially or emotionally for their loved ones. It is often portrayed as the last of Kubler-Ross's stages and a sort of goal of the dying or grieving process. While caregivers and providers may find this stage less emotionally taxing, it is important to remember that it is not inherently more healthy than the other stages. As with denial, anger, bargaining, and depression, understanding the stages has less to do with promoting a fixed progression and more to do with anticipating patients' experiences to allow more empathy and support for whatever they go through.[4][5][6][7]
The DABDA model has been increasingly criticized in recent years. The model has both historical and cultural significance as one of the most well-known models for understanding grief and loss. Many alternative models have been developed based at least in part on the original DABDA model. The principal criticisms of Kubler-Ross's stages of death and dying are that the stages were developed without sufficient evidence and are often applied too strictly. Kubler-Ross and her collaborators developed their ideas qualitatively through in-depth interviews with over two hundred terminally ill patients.[7]
Critics have focused on the fact that her research and use of "stages" have not been empirically validated. It is also said that the concept of "stages" is applied too rigidly and linearly. Instead, she aimed to describe a set of behaviors and emotions that may be experienced by a patient facing the end of life, and by describing them, improve understanding for both the patient and caregivers. Another important criticism of the model arises when it is viewed as prescriptive rather than descriptive, indicating that a patient must move through each stage to reach the final goal of "acceptance." This view holds many assumptions, including that progression through the stages is linear and that some stages are inherently less adaptive than others. Caregivers may view their job as helping a patient move through each stage, for example, moving through denial or anger onto more easily palatable stages such as bargaining or acceptance. Attempting to push the patient through the stages has the potential to cause harm, as they need to process their grief in their unique way. Dr. Kubler Ross and others have reminded readers that many patients will experience the stages fluidly, often exhibiting more than one at a time and moving between them in a non-linear fashion. It is also important to note that each stage can serve a protective role, and each patient will have a unique experience in their grief process.[4][6]
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