6.1 Conceptual Frameworks Guiding Death & Dying
Defining Death
Defining death is a complex matter, one that raises legal, ethical, and medical debates. Prior to advances in medicine human death was understood and diagnosed only when people stopped breathing, there was no pulse, and the heart stopped. Without a functioning heart and lungs, all other parts of the body cease to function. However, developments in medicine such as resuscitation have changed the definition.
Cardiac death: The irreversible loss of cardiac and respiratory function. This is the permanent absence of heartbeat and respiration.
Higher-brain death: The irreversible loss of higher-brain function. The brain stem continues to provide respiration, blood pressure, and a heartbeat without the assistance of a respirator.
Whole-brain death: The irreversible loss of all functions of the entire brain. Whole-brain death is the current law as to what defines death in legal courts of most countries and reflects the standard set by the Harvard School of Medicine. It includes a flat EEG, unresponsiveness, lack of pupillary reflexes, and decreasing body temperature.
Death comes in many ways. It can be a still-birth or a natural end to a long life. It can come as a result of illness, an accident or trauma, inflicted on oneself, or perpetrated by another. It can occur as a result of a natural disaster, or a war. It can be the result of a pandemic, infection, virus, or cancer. The following are general categories of the causes of death:
Accidental deaths, are caused by nature (such as floods, lightening, earthquake) or humans (for example a motor vehicle, or gunshot). Accidental deaths often cause emotional trauma to the family members.
Terminal death, is a patient who is is suffering from a disease that is progressive and incurable, where death will be the final outcome. Palliative treatment is often prescribed for these patients to improve their quality of life during the course of the illness. An example would be metastatic cancer, or liver cirrhosis.
Prolonged or chronic death is a condition that is long-lasting (more than 4–6 weeks, but frequently lifelong), and needs to be managed on a long-term basis. Two examples of chronic illnesses are asthma and high blood pressure that are often managed through lifelong medical treatment.
Sudden death is any death that occurs without warning, such as a cardiac arrest or sudden infant death syndrome (SIDS).
In Healthcare, we work with patients diagnosed with terminal, prolonged, or chronic illness every day. When working with patients such as these, it is important we reflect on our understanding of the vision, mission, and value statements and remember every human has a unique set of values. Their personal values become prevalent when they are faced with a terminal condition and contemplating death, and the extent to which they are willing to endure treatment becomes a very personal matter. Extending their life because we have the technology to do so might not fit into their personal value system if the quality of their life is more important than the quantity. It is essential we as healthcare workers respect the values of our patients and care for them accordingly. It is within a patient’s rights to choose not to proceed with medical interventions. If this is the case, palliative care may be provided to end of life or terminal patients. Palliative care helps the patient with symptom relief, the avoidance of pain, or relief from conditions secondary to the progressive disease.
Suicide
Any unexpected death is tragic, but when the death is due to non-natural causes, the burden on the family and anyone involved in the care, is much greater. Families, and sometimes even healthcare workers, are advised to seek support groups to assist in handling the grief process. This is particularly the case with suicide. Unfortunately, this is far too great of a reality for many Americans. According to the CDC, suicide is a leading cause of death in the US. Suicide rates increased in nearly every state from 1999 through 2016. Mental health conditions are often seen as the cause of suicide, but suicide is rarely caused by any single factor. In fact, many people who die by suicide are not known to have a diagnosed mental health condition at the time of death. Other problems often contribute to suicide, such as those related to relationships, substance use, physical health, and job, money, legal, or housing stress. As the numbers continue to climb, it is important the healthcare industry works to prevent suicide just as we work to prevent other forms of death. The CDC recommends the following for healthcare: Provide high-quality, ongoing care focused on patient safety and suicide prevention. Make sure affordable and effective mental and physical healthcare is available where people live. Train providers in adopting proven treatments for patients at risk of suicide.
Stages of Death
In 1969, Dr. Elisabeth Kuebler Ross wrote a book entitled On Death and Dying in which she outlined a conceptual framework for how individuals cope with the knowledge that they are dying (Kuebler-Ross, 1997). She proposed five stages of this process that included denial, anger, bargaining, depression, and acceptance. Not all people will go through each stage in sequence, and some may skip some stages altogether. It is important for nurses who care for patients who are dying to have an understanding about these stages in order to be able to properly care for and support themselves and their families.
Denial
Denial is the first stage because many individuals will initially react to being told that they may die by denying what they heard. People in this first stage will be in disbelief and think that their doctor has made some kind of mistake. Often patients will go to another doctor for a second opinion during this stage. Denial can be important for two reasons: it will initially be somewhat of a shock absorber enabling the person to seek clarification about the truth in what they were told. It can also provide patients with the needed time to become acquainted with the possibility that the information they heard is true which can enable them to internalize and begin to process that information.
Anger
Anger is the second stage and can be the most difficult for clinicians and caregivers to witness. In this stage, individuals have accepted that the news of impending death is true and they are naturally angry about it. They do not understand why they have to die, and they make this known to those around them. They may lash out at clinicians and loved ones alike because they are angry about their situation. Often, nothing that clinicians or family members do for them is right and they have negative things to say about other aspects of their life as well. Patients in this stage realize that they have lots of things in their life that they wanted to accomplish, but now they will not have the time.
Bargaining
The third stage is called bargaining, and it is a stage that is rarely visible to onlookers as it happens internally within the person who is dying. In this stage, individuals realize that they are past denying that they are dying and that they have been angry about it, with neither of the two causing any change in the outcome. Patients at this stage may bargain with a higher power to change their outcome and give them more time. Sometimes patients might bargain with their doctor to try to find any other option that might give them more time, but this bargaining is often accomplished internally between the dying patient and their higher power or God.
Depression
Depression is the fourth stage and is a natural part of learning that impending death is near. Patients might be saddened because they had things they wanted to accomplish, places they wanted to go, or people they wanted to see, and those things will now be cut short. In addition, patients may be experiencing decline in physical abilities, loss of function, and increased symptoms such as pain. Those are factors that can lead to depression even in people who are not dying, and are even more magnified in those who are dying.
Acceptance
The final stage is acceptance. This stage does not mean that the person is happy about their impending death, but rather that they have come to accept it and have found a sense of peace with it. The first four stages involved mostly negative emotions which have taken a toll on the patient. Time has progressed and patients can begin to move past the negative emotions and focus on the time they have left. During this stage, their hope for a cure is replaced by a hope that their final days will be peaceful and their death will be what they want it to be.
There are some important actions that nurses and clinicians can do during each of these stages to support the patient and their family. Table 3.1 outlines each stage and the associated actions that nurses can do to help.
Stage of Dying |
Patient-Centered Care Interventions |
Denial | Actively listen to patients’ concerns and provide support as needed |
Be sensitive to patients’ thoughts and ideas even if medically unrealistic | |
Patients need to feel understood and accepted | |
Anger | Educate and support the family who may be on the receiving end of the patient’s anger |
Tell them that this is a normal part of the process and that the patient is angry at impending death and taking it out on those closest to them | |
Respond to the patient’s anger in an accepting but non-provoking manner and realize that the anger is not at the healthcare worker but at the situation | |
Approach the patient in a pleasant way without being overly cheerful; rather use the patient’s expressions to gauge your own expressions during interactions | |
Bargaining | Since this stage often occurs internally, there may not be any particular action indicated on the part of the healthcare worker |
If the patient brings up the topic of God or spirituality, provide active listening and emotional support | |
Pray with the patient if comfortable with doing so and if requested. | |
Depression | Avoid clichés; do not urge patients to “cheer up” or “look on the bright side” |
Realize that nothing you do is going to take away their impending death and that your actions may be more meaningful to patients than your words | |
Educate the family about this stage and let them know that trying to cheer their loved one may not be helpful. Instead encourage the family to be supportive without trying to cheer the patient up | |
Acceptance | Patients may benefit from more non-verbal forms of communication such as quietly sitting with the patient, holding their hand, lightly stroking their back |
Continue to anticipate the patients’ needs and address any concerns | |
Continue to provide emotional support to the patient and family |
Readiness to Die
The need to better understand the experience of patients confronted with impending death was examined by Copp (1997). She sought to explore this experience particularly from the nursing perspective and exploring the nurse-patient relationship within the context of patients living with impending death. Copp found that patients who knew they were going to die at an uncertain time made many references to a separation between their body and their self, as though they were separate entities. This split in between oneself and one’s body was examined closely to better understand the individuals’ readiness to die. The readiness to die theory was based on four patterns or modes that individuals could be going through at any given time that relate to the degree of readiness of their body and their self to death. Dying persons could only be in one mode at a time but could change between modes as their illness progressed and as they came to terms with their mortality. These four modes are organized by:
- Person ready, body not ready
- Person ready, body ready
- Person not ready, body ready
- Person not ready, body not ready
It is quite possible that death could occur within each of the four defined modes; however, as clinicians we could only hope that the majority of our patients would be within the “person ready, body ready” mode. In this mode, both the patient’s body and the patient’s internal self are aligned as being ready. Copp’s theory provides a different way to think about how patients who know they are going to die might be processing that information.
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