Learning Objectives
By the end of this section, you will be able to:
- Explain the concept of death
- Examine the effects of terminal illness
- Recognize the nurse’s role in death and dying
Compassionate care during death and dying is a fundamental role of the nurse. Understanding the pathophysiological and outward physical changes that occur during the dying process allows nurses to create individualized care plans. Nursing interventions include care for the dying individual as well as family members coping with death, dying, and grief.
Unless death is immediate, as in violent or traumatic death, nurses can anticipate some of the physical changes that will occur. Nurses can educate patients and families about what to expect, anticipate symptoms, and provide individualized treatments focused on alleviating pain and discomfort. This highly responsive care is the basis for providing dignity and comfort for the dying.
Concept of Death
The concept of death is commonly defined as the cessation of biological life functions, though specific conceptions of death may vary based on cultural and spiritual beliefs. How individuals think about death and dying can directly affect the process of death in an emotional as well as a physical sense. Individuals may experience emotions about death on a continuum from fear to peace, and these emotions may fluctuate within one individual over time.
As the body ceases to function, physiological death occurs, eventually rendering the individual unable to engage in necessary basic processes such as breathing and eating. When the individual begins to face their impending death and consequently regresses into the self, psychological death occurs. A daughter caring for her mother with terminal colon cancer may notice that after a period of expressing fear of dying, her mother becomes quiet and minimally responsive. She keeps her eyes closed and responds only to physical touch. When others, perhaps unable to effectively cope with the imminent loss and its implications, withdraw from the dying individual, this is known as societal death. For example, a granddaughter may make a final visit to her grandfather with terminal lung cancer several days before his actual death. She states that she is saying goodbye now because she does not want to see him suffering.
Pathophysiology of Death
The pathophysiology of death explains the outwardly visible physical changes to the individual and the internal organ functions that deteriorate during the dying process. These changes may progress quickly or slowly. Many of these changes can be predicted and expected; however, not every individual experiences every symptom of dying. This is particularly true if the death is sudden rather than prolonged. The active dying process has three stages: early, middle, and late. Each stage has specific changes in behavior and physical changes in the body that influence the individual's appearance (Traditions Health, 2022). See Table 36.4 for an overview of the pathophysiological changes associated with each stage of death.
| System | Stage of Death | Pathophysiology | Physical Changes |
|---|---|---|---|
| Cardiovascular | Early |
|
|
| Middle |
|
|
|
| Late |
|
|
|
| Respiratory | Early |
|
|
| Middle |
|
|
|
| Late |
|
|
|
| Neurological | Early |
|
|
| Middle |
|
|
|
| Late |
|
|
|
| Gastrointestinal | Early |
|
|
| Middle |
|
|
|
| Late |
|
|
|
| Urinary | Early |
|
|
| Middle |
|
|
|
| Late |
|
|
|
| Musculoskeletal | Early |
|
|
| Middle |
|
|
|
| Late |
|
|
|
| Integumentary | Early |
|
|
| Middle |
|
|
|
| Late |
|
|
|
| Immune | Early |
|
|
| Middle |
|
|
|
| Late |
|
|
Early Stage
During the early stage of dying, there may be few visible changes, depending on the underlying disease process. The human body begins to conserve energy in this early stage, resulting in a reduced appetite and a lack of interest in food. Patients may experience trouble swallowing, feeling full after consuming a small amount of food, and decreased pleasure sensation from food. For some individuals, chewing, swallowing, and digestion may become painful due to dry mouth, oral sores, dry throat, and bloating. This is the body’s sign that fewer nutrients are needed. This stage is often difficult for family members and caregivers, since providing nourishment is essential to caregiving.
Middle Stage
The middle stage of the dying process can last anywhere from a few hours to days. Nurses will notice predictable and expected physical changes that suggest a slowing of bodily functions. The physical changes noted during the middle stage of dying result from physiological changes, such as a reduction in peripheral circulation as blood flow is reserved for the functioning of primary internal organs. Changes to internal blood circulation result in findings such as low blood pressure, irregular breathing patterns, and bradycardia (slow heart rate). Visible changes include cool hands and feet, a sensation of being cold, and paling or darkening of the skin. Decreased circulation in the skin may result in pallor, an extremely pale hue of the skin, or mottling, a bluish-red, lace-like (reticular) coloration of the skin (Figure 36.3). Many of these circulatory effects also result in weakness and fatigue. Less blood to the brain may also affect cognition and verbal response, leaving some individuals unable to speak. The inability to communicate effectively often leads to social withdrawal. However, individuals can still experience touch, hearing, and emotions.
Link to Learning
Learn techniques for helping family members connect with loved ones at the end of life even if the patient is unresponsive.
Late Stage
Depending on the cognitive and physical state before the initiation of the dying process, individuals may experience progressive failure of body organ systems. Because circulation is reduced to major organs, breathing muscles may be less effective and unable to clear secretions. This results in sporadic, shallow, or noisy breathing. Individuals may show respiratory changes such as labored breaths and periods of apnea, temporary pauses in breathing. Also, bowel or bladder incontinence may result due to a lack of muscle tone in the bowel or bladder. Patients may have little or no urine or stool output due to reduced metabolism and processing of nutrients. Skin changes progress to include widespread mottling. Continued circulatory changes include pronounced bradycardia and hypotension (low blood pressure). During this later stage, patients may become extremely restless, especially if the work of breathing is significantly impaired. Patients lose interest in food and may develop abdominal ascites as the liver is less effective in processing waste products.
Physical Signs of Impending Death
Physical signs that signal impending death typically occur during the last hours before death. Sometimes, these are continuations of previous symptoms and may be more pronounced during this stage. Signs of impending death may include terminal restlessness or terminal agitation. Individuals often have a fading of consciousness or even periods of unconsciousness. Sensory changes, including illusions, delusions, hallucinations, and death awareness, may occur (Hospice Foundation of America, 2023). Additional changes to breathing patterns are often a sign of impending death. Cheyne-Stokes breathing is a pattern of abnormal breathing characterized by progressively deeper and sometimes faster breathing, followed by a gradual decrease that results in a temporary stop in breathing (apnea), while agonal breathing refers to gasping or labored breaths that may be followed by periods of apnea lasting many seconds.
Unfolding Case Study
Unfolding Case Study #5: Part 7
Refer back to Unfolding Case Study #5: Part 6 for a review on the patient data.
After taking some time to think about options, Mr. and Mrs. Morales make the decision to pursue hospice care. They are currently waiting for the palliative care and hospice team to come discuss more specific information about what to expect.
| Hospice Nursing Notes | 1400: Completed intake assessment for Morales family. Agreed to start hospice nursing services in their home beginning tomorrow. DNR order in place. Mr. Morales expresses concern over what to expect in terms of the dying process. Discussed expectations at length with family. All questions and concerns addressed at this time. |
Terminal Illness
Also referred to as life-limiting disease, terminal illness refers to a disease state for which no cure is known. As the name suggests, a terminal illness is expected to end with death; however, the classification of a terminal illness does not delineate any specific time frame for death to occur. In the age of new and rapidly advancing medical treatments, terminal illness may encompass diseases that are not expected to result in death in a short period. Depending on the disease state, life expectancy after diagnosis can vary widely between people diagnosed with the same terminal disease. A diagnosis does not imply terminality; instead, prognosis based on symptoms guides the classification of whether a disease state is terminal. Terminal illness definitions related to hospice care specify that the illness must reduce the life expectancy to less than six months (National Institute on Aging, 2021). Examples of diseases that may lead to terminal illness include the following:
- cancer
- dementia
- stroke
- multiple sclerosis
- Huntington disease
- muscular dystrophy
- HIV
- end-stage heart, lung, kidney, or liver disease
The type of terminal illness and prognosis affect how patients and families respond, how the treatment is provided, and how insurance companies cover costs.
Life-Stage Context
Terminal Illness in Children
The diagnosis of terminal illness in children poses several challenges as compared with adults. Terminal illnesses in children tend to be:
- caused by rare diseases
- associated with specialized care
- associated with very short or very long duration of illness
While caring for the family is part of the nurse’s role regardless of the age of the terminally ill patient, caring for families of children with terminal illnesses poses unique challenges. These challenges include factors associated with the following:
- travel to treatment centers
- costs of family travel
- family dynamics associated with siblings
- sibling visitation
- financial burden to the family depending on insurance status
- emotional burden on siblings
- high levels of fear and anticipatory grief
By anticipating these challenges, nurses can proactively provide families with options, care, and support resources. A team approach is crucial in helping these families. Nurses coordinate care and work directly with social workers, providers, specialists, home care providers, and palliative care providers to create the best care plan for the patient and family.
Effects on Patient
The psychological effects of receiving a diagnosis of a terminal illness can be profound. While we know death is inevitable, being told that a specific disease is likely to deteriorate one’s health and ultimately take one's life is life-altering. Individuals may experience psychological symptoms, including anxiety, anger, and fear, many of which are the same emotions experienced during a grief response. And like the grief response, people react in different ways to terminal diagnoses. By employing coping strategies similar to those used during actual loss or grief, nurses can help patients maintain the best quality of life for the duration of their illness.
Effects on Family
Patients and family members often experience similar emotional reactions to terminal illness diagnoses. A significant change in life expectations and timeline is anticipated, and a sense of distress, panic, and grief may ensue. Terminal illness may change family dynamics as family roles change, treatment plans progress and change, and the dying individual experiences increased care needs at the end of life.
The Nurse’s Role
The nurse’s role in caring for patients with terminal illnesses focuses on facilitating communication between patients, family members, healthcare providers, and ancillary care providers. Effective communication creates an atmosphere centered on maintaining quality of life and following patients’ wishes. Nurses may work in palliative care, providing direct treatment to clients, or in hospice care, providing and coordinating comfort care at the end of life. Emotional support for families is crucial to nursing care at this stage. Education may involve teaching family members how to care for or assess patients, as well as what to expect and how to manage the expected physical and cognitive changes at the end of life. This information can be invaluable for easing the fear often experienced as a terminal illness progresses. It can also help to prevent compassion fatigue, the emotional toll experienced by individuals caring for others, and to identify caregivers who require a temporary break from their duties.
Communication
Interpersonal communication techniques are crucial in grief, loss, death, and dying. Patients, family members, and other loved ones are in vulnerable emotional states and require patience, consideration, and a calm presence. Nurses must respect different values and beliefs about death and offer clear and factual information to help family members cope with changes.
Helping caregivers and families understand how to communicate with the dying patient is also the nurse’s role. They must explain the importance of continued verbal communication, even if the person is unresponsive. Studies based on brain responses to auditory stimuli show that the sense of hearing persists at the end of life (Blundon et al., 2020). While studies cannot measure how a dying person processes the information, researchers are certain that the sense of hearing is present. Loved ones should be encouraged to speak softly, sing, and continue to express themselves verbally with the dying individual. Other studies have explained the benefits of music for terminally ill patients. Music improves the emotional state and mental health of terminally ill individuals, even if physical symptoms are not changed (Gao et al., 2018).
Emotional Support
Emotional support is necessary for the patient, caregivers, and family members. Each person will react differently to anticipated and actual death. Patients should freely express their wishes, desires, concerns, and fears. Support for caregivers includes respite care, which is temporary care for an individual to provide relief to their usual caregiver, and therapy to develop coping mechanisms for processing caregiver burnout. Caregiver burnout and compassion fatigue are similar concepts that explain the emotional toll experienced by individuals caring for others. Both caregiver burnout and compassion fatigue may result in emotional and physical symptoms, signaling a state of stress and extreme exhaustion. Nurses can anticipate possible caregiver fatigue and proactively prepare the caregiver and encourage use of available respite services before burnout occurs.
Emotional support for nurses caring for these patients and families is also crucial. Nurses often face intense emotional strain and can experience compassion fatigue and burnout. Resources available to them include counseling services, peer support groups, and stress management programs. Employers may offer employee assistance programs (EAPs) that provide confidential counseling and mental health resources. Additionally, regular debriefing sessions and access to professional development on self-care techniques can help nurses manage their emotional well-being.
Clinical Judgment Measurement Model
Recognize Clues: Compassion Fatigue
Nurses must diligently recognize clues that can help guide their care actions. In palliative care, nurses may provide as much care for the family as the patient. Compassion fatigue often presents with subtle signs and symptoms that overlap with other reactions to loss and grief. Keeping an open line of communication with family members will alert nurses to symptoms such as the following:
- exhaustion
- irritability
- increased anxiety
- trouble concentrating
These clues alert the nurse that a caregiver requires respite care to continue providing high-quality care for their family member. It may be hard for the family member to acknowledge these feelings without feeling guilty for being unable to take on all the care. Nurses can assure caregivers that physical and emotional rest is critical for their health and the well-being of their loved ones.
Palliative Care
An interdisciplinary approach to specialized medical and nursing care for people with severe and terminal illnesses is called palliative care. It focuses on providing relief from pain, physical stress, and mental stress at any stage of disease to improve the quality of life for both the person and their family. Providers who specialize in palliative care have had training tailored to helping patients and their family members cope with the reality of the impending death and make plans for what will happen after. End-of-life care may take on various forms depending on the length of the end-of-life period. However, palliative care actions generally focus on improving or maintaining the quality of life for individuals rather than providing curative medical treatment. Palliative care providers work in a team to provide comprehensive care for patients with terminal illnesses. While care is individualized, palliative care teams often include the following:
- primary care providers
- nurses
- oncologists
- palliative care providers
- geriatricians
- pain management specialists
- physical therapists
- speech therapists
- occupational therapists
- social workers
- religious leaders
- medical specialists
Palliative care may occur in personal homes, long-term care facilities, or hospitals, and it occurs simultaneously with medical treatments that may improve or prolong prognosis. In the later stages of illness, palliative care may include comfort care. These interventions are meant to maintain an individual’s physical and emotional comfort during the dying process. Comfort care in palliative care can also occur simultaneously with medical treatments.
Hospice Care
According to the National Hospice and Palliative Care Organization (NHPCO, 2019), the mission of hospice and palliative care is to strive for patients to die pain-free and with dignity. A specific comfort care, hospice care is provided at the end of life for patients as well as their families. It involves caring for dying patients by helping them be as free from pain as possible, providing them with assistance to complete wills and other arrangements for their survivors, giving them social support through the psychological stages of loss, and helping family members cope with the dying process, grief, and bereavement. It focuses on five topics: communication, collaboration, compassionate caring, comfort, and cultural (spiritual) care.
Hospice care can be thought of as a type of palliative care, providing many services. However, there are distinct differences between the two (Table 36.5). Hospice care does not involve treatments aimed at curing the disease. The decision is typically made when curative treatments are no longer effective or when the burden of the treatment outweighs the benefits in terms of quality of life compared to the progression of the disease itself. As the dying process progresses, hospice care may involve routine, inpatient, and continuous care. Hospice-trained caregivers also provide respite care to allow family and other full-time caregivers rest time.
| Feature | Hospice Care | Palliative Care |
|---|---|---|
| Definition | Comprehensive care for terminally ill patients focused on comfort and quality of life | Specialized medical care for people with serious illnesses focused on relieving symptoms and stress |
| Eligibility | Patients with a prognosis of six months or less to live | Patients at any stage of a serious illness, including those undergoing curative treatment |
| Goal | To provide comfort and support during the end-of-life process | To improve quality of life by managing symptoms and providing relief from pain and stress |
| Treatment focus | Symptom management without curative intent | Symptom management with the possibility of curative treatments |
| Duration of care | Limited to the last six months of life | No time limit; provided based on patient need and illness progression |
| Insurance coverage | Often covered by Medicare, Medicaid, and most private insurance plans | Coverage varies; often included under standard medical benefits |
Because hospice care is a unique service paid for by insurance, patients must meet specific criteria to qualify for it. Hospice eligibility criteria include a terminal illness diagnosis and an associated life expectancy of six months or less (NHPCO, 2019). Hospice eligibility also requires that patients and healthcare providers limit their treatment goal to achieving, through palliative care and symptom relief, the best quality of life possible during the last days of life. Hospice symptom management is not paired with medical treatments, as in palliative care. Curative treatments are stopped for ineffectiveness as deemed appropriate by the healthcare provider.
Family members who have agreed to put their loved one on hospice may become anxious when the patient begins to experience death. They may believe that feeding or breathing tubes will sustain life and want to change their decision. Hospice workers try to inform the family of what to expect and reassure them that much of what they see is a normal part of the dying process.
Autonomy and Empowerment
Nursing interventions based on self-empowerment enable patients and families to identify and ultimately achieve their own care goals, thus producing a sense of control. Self-empowerment for terminally ill individuals has been associated with a perceived ability to better manage medical actions, changing life roles, and the psychological impacts of the illness (Wakefield et al., 2018).
Treatment plans that can incorporate a sense of control and autonomy into the dying individual’s daily life are particularly effective at improving the patient’s general attitude and decreasing levels of depression. Active coping (seeking information and working to solve problems) typically produces more positive outcomes than passive coping (characterized by avoidance and distraction). Although each situation is unique and depends partially on the individual’s developmental stage, the consensus is that caregivers must foster a supportive environment and partnership with the dying individual, promoting independence, control, and self-respect.