Medical professionals encounter dying patients throughout all disciplines of healthcare. This patient becomes unique as the focus of their care shifts from becoming well to preparing for death. This is a difficult transition for patients, their loved ones, and healthcare providers to undergo. A better understanding of the process of moving toward death allows providers to address the unique needs of their patients and guide them and their loved ones through the process.
The most commonly taught system for understanding the process of grieving and preparing for death is the DABDA model which states the patient will progress through 5 stages: denial, anger, bargaining, depression, and acceptance. The DABDA stages are based on works of Elisabeth Kubler-Ross, a Swiss psychologist whose work revolved around grief, dying patients, and those who care for them. Her book, On Death and Dying which was published in 1969, was the first work to outline these stages. Her model has been applied to many types of grief and loss such as amputation of a limb or loss of a job. Further work by Kubler-Ross and other scholars has to lead to the understanding that these stages may not occur in sequential order. Additionally, each stage may manifest very differently, or not at all, in individual patients due to differences in personality, culture, the rate of disease progression, and many other factors. The DABDA stages model remains popular as it provides an uncomplicated system for providers, especially those who only rarely care for dying patients, to better understand and provide for the needs of the dying patient.
At first, the patient reacts with denial. This may initially manifest as shock or speechlessness. It is common to believe a mistake in the prognosis has been made due to inaccurate test results, having not attempted the correct treatment, or deficits in knowledge of their provider. Some patients may exist in an alternate reality. They may tell loved ones, who are already aware of their prognosis, “We will go on a vacation as soon as I’m better."
The patient moves to the second phase when they are no longer able to deny their imminent death. They become frustrated and angry. They typically direct their aggression toward friends, family, and providers. Examples statements include: “how can you let this happen to me,” "this is your fault," and “why is this happening to me?”
The third stage manifests as a patient negotiates to avoid death. It is common for him or her to negotiate with a higher power in their religion, typically asking them to cure the disease or prolong life in exchange for reforming their lifestyle. Examples include: “if you cure this lung cancer I’ll never smoke cigarettes again” or “give me one more year, and I will be a better father.” It is not uncommon for an individual who has not actively practiced religion throughout his or her life to become strongly religious. A patient may ask for a spiritual leader, begin praying, or ask others if they believe the patient will be accepted into the afterlife.
The fourth phase begins as the patient recognizes the inevitability of death. Despair is a common reaction, as if they have been defeated as they battled for life in the earlier stages. They typically show symptoms traditionally associated with depression: sadness, fatigue, self-harm, self-pity, or social avoidance. They may refuse visitors and medications or make statements such as, "I'm going to die soon, why does it matter?"
In the last stage of death, emotions become more calm and stable. They may focus on finding joy in what time they have left. They will commonly reflect on joyful memories or tell stories from the past. Spending time with loved ones can create pleasant memories for survivors to reflect on. The patient may begin to prepare for death by planning their funeral or making sure loved ones will be taken care of financially and emotionally after their death.
The transition in care, from attempting to heal the patient to caring for them as they 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 which 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.
Other Models of Grief
The DABRA 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' 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
Woden's model of grief does not rely on stages but instead states that 4 tasks must be completed by the patient 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. To complete this task, the patient will resume typically daily activities such as resuming work or hobbies or becoming engaged as a spouse or parent.
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.
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 they have been 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]
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