Continuing Education Activity
Medical professionals will work with dying patients in all disciplines, and the process is a difficult one 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.
- 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 patient that is dying.
Medical professionals in all disciplines work with dying patients, and doing so effectively is 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. Understanding the experience of dying and grief allows providers to support the unique needs of patients, their loved ones, and other members of the healthcare team.
Dr. Elizabeth Kubler-Ross introduced the most commonly taught system for understanding the process of dying in her 1969 book, On Death and Dying. The book explored the experience of dying through interviews with terminally ill patients and described Five Stages of Dying: Denial, Anger, Bargaining, Depression, and Acceptance (DABDA). Kubler-Ross and others subsequently applied her model to the experience of loss in many contexts, including grief and other significant life changes, such as limb amputation or loss of a job. 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 was the result of 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 and behavior, common in the setting of terminal illness, which may otherwise seem atypical. 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.
Kubler-Ross's Five Stages of Dying
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 difficult 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, as with blame of medical providers for inadequately preventing the illness, of family members for contributing to risks or not being sufficiently supportive, or of 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 to 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.
Bargaining typically manifests as patients seek 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 with 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 choose to 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, the reason for 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.
Issues of Concern
Other Models of Grief
The DABDA model is frequently criticized for being too rigid. Other models include Bowlby and Parkes' Four Phases of Grief and Worden's Four Basic Tasks In Adapting To Loss.
Bowlby and Parkes' Four Phases of Grief
Bowlby and Parkes proposed a reformulated theory of grief based in the 1980s. Their work is based on Kubler-Ross's model. Their model has 4 stages and emphasizes that the grieving process is not linear.
Shock and Disbelief
The initial phase replaced the term "denial" due to negative connotations. In this phase, the reality is altered as the mind responds to a stressful situation by becoming unresponsive or numb to the new situation. Over time, the mind processes the new reality, and the patient moves to a new phase.
Searching and Yearning
This phase is closely related to the Anger and Bargaining stage of the DABDA model. The patient will attempt to undo the new reality and question the reason for it.
Disorganization and Repair
This phase closely relates to the Depression stage of the DABDA model. The patient experiences full acceptance of the new reality. They show signs of depression and apathy.
Rebuilding and Healing
In this phase, the patient experiences a "renewed sense of identity," which represents overcoming the sense of loss and feels in control of their destiny. They no longer show signs of depression.
Worden's Four Basic Tasks In Adapting To Loss
Worden's model of grief does not rely on stages but instead states that the patient must complete 4 tasks to complete bereavement. These tasks do not occur in any specific order. The grieving person may work on a task intermittently until it is complete. This model is more applicable to the grief of a survivor but may also be applied to a patient-facing death.
Accepting Reality of Loss
Initially, the patient may have difficulty accepting the reality of impending death. Typically, acceptance is viewed as being ready to move forward with the process of preparing for death.
Experiencing Pain of Grief
Patients may feel sadness, anger, or confusion. They are experiencing the pain of loss. The task is completed as the patient begins to feel "normal" again.
Adjusting to Environment
An all-consuming focus on impending death will cause the patient to ignore other roles in life that are important to them. The patient will typically resume daily activities such as resuming work or hobbies or becoming engaged as a spouse or parent to complete this task.
Redirecting Emotional Energy
This task is generally applicable to grieving survivors. Survivors redirect their emotional energy from suffering the loss of a loved one to engaging in new activities that bring pleasure and new experiences.
Criticism of the Kubler-Ross 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.
The transition in care, from attempting to heal the patient to caring for them near death, is difficult for everyone involved. Healthcare providers sometimes feel as if "their job is done" as they can no longer heal the patient and "drop out" of the patient's care. This can lead to patients, and their loved ones, are feeling that healthcare providers abandon them as they near death. They often wish for guidance on the complex changes that the patient is going through emotionally and physically. Actions that are a normal part of the dying process, such as anger and refusing visitors, can leave loved ones confused and upset. Understanding the stages of grief allows providers to give support and guidance during the dying process.
Enhancing Healthcare Team Outcomes
For the healthcare team, the most difficult patients are those near death, it is difficult for everyone involved. Healthcare providers sometimes feel as if "their job is done" as they can no longer heal the patient and "drop out" of the patient's care. This can lead to patients, and their loved ones, to feel abandoned by the healthcare team as they near death. They often wish for guidance emotionally and physically. This is where an end-of-life team can be very helpful, and hospice care nursing staff can provide counsel, administer comfort care, deliver emotional support, and empathize with both the patient and the family. Hospice care pharmacists are also involved, dispensing appropriate comfort medication in a timely fashion by working directly with the nursing staff. This will create a proper environment for the stages of death to play out. The healthcare team should have an understanding of the stages of grief which allows providers to give support and guidance during the dying process and provides a coordinated effort to provide the patient and family with much-needed emotional support. [Level 5]