Palliative care often includes hospice care before or at the end of life (Fig. 10-3). Hospice is not a place but a concept of care that provides compassion, concern, and support for the dying (Fig. 10-4). Hospice exists to provide support and care for persons in the last phases of a terminal disease so that they might live as fully and as comfortable as possible. Hospice programs provide care with an emphasis on symptom management, advance care planning, spiritual care, and family support.⁴

FIG. 10-3 Relationship of palliative care, end-of-life care, and hospice care.

The major difference between palliative care and hospice care is that palliative care allows a person to simultaneously receive curative and palliative treatments. Hospice care is provided once a person decides to forgo curative treatments.

Approximately 1.5 million patients every year receive services through hospice programs. About 42% of the patients who die in the United States are under the care of a hospice program.⁵ More than a third of all hospice patients are 85 years of age or older, and 83% are over 65. Of these patients, the most common diagnosis is cancer. Eighty percent of patients using hospice services are white.⁵ Currently the median length of stay in a hospice program is 21 days.

Hospice programs are organized under a variety of models. Some are hospital-based programs, others are part of existing home health care agencies, and others are freestanding or community-based programs. However, regardless of their organization, all hospices emphasize palliative rather than curative care, and quality rather than quantity of life.

Hospice care is provided in a variety of locations, including the home, inpatient settings, and long-term care facilities. Hospice care can be on a part-time, intermittent, on-call, regularly scheduled, or continuous basis. Hospice services are available 24 hours a day, 7 days a week to provide help to patients and families in their homes. The inpatient hospice settings have been deinstitutionalized to make the atmosphere as relaxed and homelike as possible (Fig. 10-5). Staff and volunteers are available for the patient and the family.

FIG. 10-5 Inpatient hospice settings have been deinstitutionalized to make the atmosphere as relaxed and homelike as possible. (Photodisc/Thinkstock)

A medically supervised interdisciplinary team of professionals and volunteers provides holistic hospice services. The hospice nurse plays a pivotal role in coordination of the hospice team.⁶ Hospice nurses work collaboratively with hospice physicians, pharmacists, dietitians, physical therapists, social workers, certified nursing assistants, chaplains and other clergy, and volunteers to provide care and support to the patient and the family. Hospice nurses are educated in pain control and symptom management, spiritual assessment, and assessment and management of family needs. To meet patient and family needs, hospice nurses need excellent teaching skills, compassion, flexibility, cultural competence, and adaptability.

The decision to begin hospice care is difficult for several reasons. Frequently patients, families, physicians, and other health care providers lack information about hospice care. Some cultural/ethnic groups may underutilize hospice because of lack of awareness of hospice services, desire to continue with potentially curative therapies, and concerns about lack of minority hospice workers.⁷ Physicians may be reluctant to give referrals because they sometimes view a patient’s decline as their personal failure. Some patients or family members see it as giving up.

Admission to a hospice program has two criteria. The first criterion is that the patient must desire the services and agree in writing that only hospice care (and not curative care) can be used to treat the terminal illness. Patients in hospice programs can withdraw from the program at any time (e.g., if their condition unexpectedly improves). Patients can receive care for other health problems that begin after starting hospice.

The second criterion is that the patient must be considered eligible for hospice. Medicare, Medicaid, and other insurers require that two physicians certify that the patient’s prognosis is terminal, with less than 6 months to live. It is important to realize that the physician who certified that a hospice patient is terminal does not “guarantee” death within 6 months. Indeed, if a patient in hospice survives beyond 6 months, Medicare and other reimbursement organizations will continue to reimburse for more extended periods of treatment if the patient still meets enrollment criteria. After this initial certification, only one physician (e.g., the hospice medical director) is needed to recertify the patient.

Death

Death occurs when all vital organs and body systems cease to function. It is the irreversible cessation of cardiovascular, respiratory, and brain function.

Brain death is an irreversible loss of all brain functions, including those of the brainstem. Brain death is a clinical diagnosis, and it can be made in patients whose hearts continue to beat and who are maintained on mechanical ventilation in the ICU.⁸ Brain death occurs when the cerebral cortex stops functioning or is irreversibly destroyed.

Since the development of technology that assists in supporting life, controversies have arisen over the exact definition of death. Questions and discussions have focused on whether brain death occurs when the whole brain (cortex and brainstem) ceases activity or when function of the cortex alone stops. In 1995 the Quality Standards Subcommittee of the American Academy of Neurology recommended diagnostic criteria guidelines for clinical diagnosis of brain death.⁹ These criteria for brain death include coma or unresponsiveness, absence of brainstem reflexes, and apnea. Specific assessments by a physician are required to validate each of the criteria.^8,9

Currently, legal and medical standards require that all brain function must cease for brain death to be pronounced and life support to be disconnected. Diagnosis of brain death is of particular importance when organ donation is an option. In some states and under specific circumstances, registered nurses are legally permitted to pronounce death. Policies and procedures may vary from state to state and among health care institutions.

End-of-Life Care

End of life generally refers to the final phase of a patient’s illness when death is imminent. The time from diagnosis of a terminal illness to death varies considerably, depending on the patient’s diagnosis and extent of disease.

The Institute of Medicine defines end of life as the period during which an individual copes with declining health from a terminal illness or from the frailties associated with advanced age, even if death is not clearly imminent.¹⁰ In some cases it is obvious to health care providers that the patient is at the end of life, but in other cases they may be uncertain if the end is close at hand. This uncertainty adds to the challenge of answering common questions the patient and family may ask, such as “How much time is left?”

End-of-life care (EOL care) is the term used for issues and services related to death and dying. EOL care focuses on physical and psychosocial needs for the patient and the patient’s family. The goals for EOL care are to (1) provide comfort and supportive care during the dying process, (2) improve the quality of the patient’s remaining life, (3) help ensure a dignified death, and (4) provide emotional support to the family.

Physical Manifestations at End of Life

As death approaches, metabolism is reduced and the body gradually slows down until all functions end. Respiratory changes are common at the end of life. Respirations may be rapid or slow, shallow, and irregular. Breath sounds may become wet and noisy, both audibly and on auscultation. Noisy, wet-sounding respirations, termed the death rattle, are caused by mouth breathing and accumulation of mucus in the airways. Cheyne-Stokes respiration is a pattern of breathing characterized by alternating periods of apnea and deep, rapid breathing. When respirations cease, the heart stops beating within a few minutes. The physical manifestations of approaching death are listed in Table 10-2.

TABLE 10-2

PHYSICAL MANIFESTATIONS AT END OF LIFE

System	Manifestations
Sensory system
Hearing	• Usually last sense to disappear
Touch	• Decreased sensation • Decreased perception of pain and touch
Taste and smell	• Decreased with disease progression
Sight	• Blurring of vision • Sinking and glazing of eyes • Blink reflex absent • Eyelids remain half-open
Cardiovascular system	• Increased heart rate; later slowing and weakening of pulse • Irregular rhythm • Decreased blood pressure • Delayed absorption of drugs administered intramuscularly or subcutaneously
Respiratory system	• Increased respiratory rate • Cheyne-Stokes respiration (pattern of respiration characterized by alternating periods of apnea and deep, rapid breathing) • Inability to cough or clear secretions resulting in grunting, gurgling, or noisy congested breathing (death rattle) • Irregular breathing, gradually slowing down to terminal gasps (may be described as guppy breathing)
Urinary system	• Gradual decrease in urine output • Incontinence of urine • Inability to urinate
Gastrointestinal system	• Slowing or cessation of GI function (may be enhanced by pain-relieving drugs) • Accumulation of gas • Distention and nausea • Loss of sphincter control, producing incontinence • Bowel movement before imminent death or at time of death
Musculoskeletal system	• Gradual loss of ability to move • Sagging of jaw resulting from loss of facial muscle tone • Difficulty speaking • Swallowing becoming more difficult • Difficulty maintaining body posture and alignment • Loss of gag reflex • Jerking seen in patients on large amounts of opioids
Integumentary system	• Mottling on hands, feet, arms, and legs • Cold, clammy skin • Cyanosis of nose, nail beds, knees • “Waxlike” skin when very near death

Psychosocial Manifestations at End of Life

A variety of feelings and emotions can affect the dying patient and family at the end of life (Table 10-3). Most patients and families struggle with a terminal diagnosis and the realization that there is no cure. The patient and the family may feel overwhelmed, fearful, powerless, and fatigued. The family’s response depends in part on the type and length of the illness and their relationship with the person.

The patient’s needs and wishes must be respected. Patients need time to think and express their feelings. Response time to questions may be sluggish because of fatigue, weakness, and confusion.

Bereavement and Grief

Although the terms are often used interchangeably, bereavement refers to the state of loss, and grief refers to the reaction to loss. Bereavement is the period following the death of a loved one during which grief is experienced and mourning occurs. The time spent in bereavement depends on a number of factors, including how attached one was to the person who died and how much time was spent anticipating the loss.

Grief is a normal reaction to loss. Grief occurs in response to the real loss of a loved one and the loss of what might have been. Grief is dynamic and includes both psychologic and physiologic responses following a loss. Psychologic responses include anger, guilt, anxiety, sadness, depression, and despair. Physiologic reactions include sleeping problems, changes in appetite, physical problems, and illness.

Grief is a powerful emotional state that affects all aspects of a person’s life. It is a complex and intense emotional experience. In the Kübler-Ross model of grief, there are five stages 11,12 (Table 10-4). Not every person experiences all the stages of grieving, and they are not always progressive in order. It is common to reach a stage and then go backward. For example, a person may have reached the stage of bargaining, and then revert back to the denial or anger stage.

TABLE 10-4

KÜBLER-ROSS MODEL OF GRIEF

Stage	What Person May Say	Characteristics
Denial	No, not me. It cannot be true.	Denies the loss has taken place and may withdraw. This response may last minutes to months.
Anger	Why me?	May be angry at the person who inflicted the hurt (even after death) or at the world for letting it happen. May be angry with self for letting an event (e.g., car accident) take place, even if nothing could have stopped it.
Bargaining	Yes me, but…	May make bargains with God, asking “If I do this, will you take away the loss?”
Depression	Yes me, and I am sad	Feels numb, although anger and sadness may remain underneath.
Acceptance	Yes me, but it is okay	Anger, sadness, and mourning have tapered off. Accepts the reality of the loss.

Adapted from Kübler-Ross E: On death and dying, New York, 1969, Macmillan. (Classic)

Another model of grief is the grief wheel (Fig. 10-6). After a person experiences the loss, he or she feels shock (numbness, denial, inability to think straight). Then comes the protest stage where a person experiences anger, guilt, sadness, fear, and searching. Then comes the disorganization stage where a person feels despair, apathy, anxiety, and confusion. The next stage is reorganization where a person gradually returns to normal functioning, but he or she feels different. The final stage is the new normal. Eventually the destabilization experienced in grief resolves and a normal state can began. However, because of the loss, the normal state is not the same as before. The challenge is to accept the new normal. Trying to go back to the “old” normal (which is not there anymore) is what causes a great deal of anxiety and stress.

FIG. 10-6 The grief wheel model begins with the normal state at the bottom. After a person goes through the grief process, eventually the grief will resolve. However, because of the loss, the normal state is not the same as before. The challenge is to accept the “new normal.” (Adapted from Powell TJ: *Stress-free living,* Dorling Kindersley Ltd 2000. © Dorling Kindersley Ltd.)

The manner in which a person grieves depends on factors such as the relationship with the person who has died (e.g., spouse, parent), physical and emotional coping resources, concurrent life stresses, cultural beliefs, and personality. Additional factors that affect the grief response include mental and physical health, economic resources, religious influences or spiritual beliefs, family relationships, social support, and time spent preparing for the death. Issues that occurred before the death (e.g., marital problems) may affect the grief response.¹³

The grief experience for the caregiver of the patient with a chronic illness often begins long before the actual death event. This is called anticipatory grief. Patients at the end of life can also experience anticipatory grief.

Working in a positive way through the grief process helps to adapt to the loss.¹⁴ Grief that assists the person in accepting the reality of death is called adaptive grief, which is a healthy response. It may be associated with grieving before a death actually occurs or when the inevitability of the death is known. Indicators of adaptive grief include the ability to see some good resulting from the death and positive memories of the deceased person.

Dysfunctional reactions to loss can occur, and the physical and psychologic impact of the loved one’s death may persist for years. Prolonged grief disorder, formerly called complicated grief, is a term used to describe prolonged and intense mourning. Prolonged grief disorder can include symptoms such as recurrent and severe distressing emotions and intrusive thoughts related to the loss of a loved one, self-neglect, and denial of the loss for longer than 6 months. Bereaved individuals with prolonged grief disorder may feel “stuck” and unable to move forward after the death of a loved one. It is estimated that one in five bereaved individuals experiences prolonged grief disorder. Those who experience prolonged grief disorder are at great risk for illness and have work and social impairments. Some studies suggest that prolonged grief disorder is less likely to occur after deaths in hospice compared with those in acute care settings.¹⁵

Bereavement and grief counseling is an important aspect of palliative care. The goal of a bereavement program is to provide support and to assist survivors in the transition to a life without the deceased person. Incorporate grief support into the plan of care for the family and significant others during the patient’s illness and after the death.

Priority interventions for grief must focus on providing an environment that allows the patient and the family to express their feelings such as anger, fear, and guilt. Discussion of feelings helps both the patient and the family work toward resolution of the grief process. Respect for the patient’s privacy and need or desire to talk (or not to talk) is important. Honesty in answering questions and giving information is essential.

Spiritual Needs

Assessment of spiritual needs in EOL care is a key consideration (Table 10-5). Spiritual needs do not necessarily equate to religion. Spirituality is defined as those beliefs, values, and practices that relate to the search for existential meaning and purpose and that may or may not include a belief in a higher power.¹⁶ A person may not be part of a particular religion but have a deep spirituality. Many times at the end of life, patients question their beliefs about a higher power, their journey through life, religion, and an afterlife (Fig. 10-7). Some patients may choose to pursue a spiritual path. Some may not. Respect an individual’s choice. Assess the patient’s and the family’s preferences related to spiritual guidance or pastoral care services and make appropriate referrals.¹⁶

TABLE 10-5

SPIRITUAL ASSESSMENT

1. Who or what provides you strength and hope?

2. Do you use prayer in your life?

3. How do you express spirituality?

4. How would you describe your philosophy of life?

5. What type of spiritual or religious support do you desire?

6. What is the name of your clergy, minister, chaplain, pastor, rabbi?

7. What does suffering mean to you?

8. What does dying mean to you?

9. What are your spiritual goals?

10. Is there a role of church/synagogue in your life?