Download Chapter 15

Chapter 15
Hospice Care
SectionⅠ dying and Death
Death occurs when all vital organs and body systems cease to function. It is the irreversible
cessation of cardiovascular, res piratory, and brain function.
Brain death is an irreversible loss of all brain functions, including the brainstem. Brain death
is a clinical diagnosis, and 让 can be made in patients whose hearts continue to beat and who are
maintained on mechanical ventilation in the ICU. Brain death occurs when the cerebral cortex
stops functioning or is irreversibly destroyed. The cerebral cortex is responsible for voluntary
movement and actions, as well as for cognitive functioning.
1.unreceptivity and unresponsiticity
2.no movements or breathing
3.no reflexe
4.flat E.E.G
Since the development of technology that assists in supporting life, controversies have arisen
related to an exact definition of death. Questions and discussions have developed around whether
brain death occurs when the whole brain (cortex and brainstem) ceases activity or when cortical
function alone stops. In 1995 the Quality Standards Subcommittee of the American Academy of
Neurology recommended diagnostic criteria guidelines for clinical diagnosis of brain death in
adults. 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.
Currently, legal and medical standards require that all brain function must cease for brain
death to be pronounced and life support to be disconnected by the physician. 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, among the Board of Nurse Examiners for Registered
Nurses in each state, and among institutions.
process of dying
1.agonal stage
2.clinical death stage
3.biological death stage
Section 2
Hospice care
Hospice care (or palliative care) is any form of care or treatment that focuses on reducing the
severity of disease symptoms, rather than trying to delay or reverse the progression of the disease
itself or provide a cure. the overall goals of palliative care are to (1) prevent and relieve suffering
and (2) improve quality of the patient’s remaining life for patients with serious, life-limiting
illnesses. Specific goals of hospice care (palliative care) are:
1.provide relief from symptoms, including pain.
2.regard dying as a normal process.
3.affirm life and neither hasten nor postpone death.
4.support holistic patient care and enhance quality of life.
5.offer support to patients to live as actively as possible until death.
6. offer support to family during patient’s illness and in their own bereavement.
(Adapted from World Health Organization. Available at www.who.int/cancer/pallliative/
definition/en)
Palliative care originated as end-of-life (EOL) care in the 1960s. Initially this care focused on
providing the relief of symptoms and emotional support to the patient, family, and significant
other during the terminal phase of a serious life-limiting disease. Now that phase of palliative care
is called end-of-life palliative care, which is the focus of this chapter. Since its start, the scope of
palliative care has greatly expanded. Now palliative care focuses on maintaining and improving
the quality of life for all patients and their families during any stage of a life-limiting illness,
whether acute, chronic, or terminal.
According to the World Health Organization (WHO), palliative care is an approach that
improves the quality of life of patients and their families who face problems associated with
life-threatening illness. Palliative care aims to prevent and relieve suffering by early identification,
assessment, and treatment of pain and other types of physical, psychologic, emotional, and
spiritual distress. Ideally, all patients receiving curative or restorative health care should receive
palliative care concurrently. Palliative care extends into the period of EOL care, as well as the
bereavement period following the patient's death.
Palliative care is often initiated after a person receives a diagnosis of a life-limiting illness.
Ideally, the palliative care team is an interdisciplinary collaboration involving physicians, social
workers, pharmacists, nurses, chaplains, and other health care professionals. Communication
among the patient, the family, and the palliative health care team is important to provide optimal
care. Patients receive palliative care services in the home as well as in long-term and acute care
facilities. Patients receiving palliative care may also spend time in the intensive care unit (ICU).
Many institutions have established interdisciplinary palliative and hospice care teams.
Palliative care often includes hospice care before or at the end of life . Hospice is not a place
but a concept of care that provides compassion, concern, and support for the dying. Hospice exists
to provide support and care for persons in the last phases of incurable diseases so that they might
live as fully and as comfortably as possible. Hospice programs provide care at the end of life with
an emphasis on symptom management, advance care planning, spiritual care, and family support,
including bereavement.
Hospices were originally places of rest for travelers in the fourth century. In the nineteenth
century a religious order established hospices for the dying in Ireland and London. The modern
hospice is a relatively recent concept that originated and gained momentum in the United
Kingdom in the 1960s.
During the 1970s the concept of hospice was introduced into health care in the United States,
and by the end of the decade, every state had hospice programs. In 1982 the Medicare hospice
benefit was created, which provides families with the resources to care for their dying loved one at
home. Approximately 1.5 million patients every year receive services through hospice programs.
Of the annual deaths that occur in the United States, about 39% are under the care of a hospice
program. More than a third of all hospice patients are 85 years of age or older and 80% are over
65. Of these patients, most (41 %) have a cancer diagnosis. Currently the median length of stay in
a hospice program is 20 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, volunteer-intensive 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 setting, 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 and 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 a homelike as possible. Staff and volunteers
are available for the patient and family.
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. 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 family members. Hospice nurses are
educated in pain control and symptom management. Hospice care requires excellent teaching
skills, compassion, flexibility, and adaptability to meet patient and family needs.
The decision to begin hospice care is difficult. Several reasons for this exist. Frequently
patients, families, and physicians may lack information about hospice care. Some cultural/ethnic
groups may underutilize hospice due to lack of awareness of hospice services, desire to continue
with potentially curative therapies, and concerns about lack of minority hospice workers.
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 programs at any
time (e.g., if their condition unexpectedly improves).
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 patients still meet enrollment
criteria. After this initial certification, only one physician (e.g., the hospice medical director) is
needed to recertify the patient.
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 山 ness to death varies considerably depending on the
patient's diagnosis and extent of disease. It usually varies from a few hours to several weeks, or
sometimes can be months.
The Institute of Medicine defines end of life as the period of time 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.
In some cases, it is obvious to health care providers that the patient is in this phase, but in
other cases, they may be uncertain if the end is close at hand. This uncertainty adds to the
difficulty of communicating clearly to patients and families.
End-of-life care (EOL care) is the term used for issues related to death and dying, as well as
services provided to address these issues. 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. Generally, respirations cease first. Then the heart stops beating within a few
minutes. Trauma and disease processes can affect physical manifestations at the end of life.
Sensory Changes. With decreased circulation and oxygenation to the brain, there are
alterations in the interpretation of sensory input. Sensory changes can include blurred vision,
decreased sense of taste and smell, and decreased pain and touch perception.The blink reflex is
eventually lost, and the patient appears to stare. The sense of touch decreases first in the lower
extremities because of circulatory alterations. Hearing is commonly believed to be the last sense to
remain intact.
Circulatory and Respiratory Changes. With decreased oxygenation and altered circulation
causing metabolic changes, the heart rate slows and weakens and the blood pressure falls
progressively. 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 due to 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. This type of breathing is usually seen as a person nears death.
There is decreased circulation, especially noticeable on the skin. The extremities become pale,
mottled, and cyanotic. The skin feels cool to the touch, first in the feet and legs, then progressing
to the hands and arms, and finally progressing to the torso. The skin may feel warm because of an
elevated body temperature related to an underlying disease process.
Loss of Muscle Tone. As death becomes imminent, metabolic changes cause the muscular
system to gradually weaken, leading to sluggish functional abilities. Facial muscles lose tone,
causing the jaw to sag. Decreased muscle coordination leads to difficulty in speaking. Swallowing
becomes increasingly difficult, and the gag reflex is eventually lost. Gastro-intestinal motility
diminishes, leading to constipation, gas accumulation, distention, and nausea. The ability of the
kidneys to produce urine and the urinary system to excrete urine decreases. Loss of sphincter
control can lead to fecal and urinary incontinence.
Psychosocial Manifestations at End of Life
A variety of feelings and emotions can affect the dying patient and family at the end of life. 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 is dependent in part on the type and length of the illness, as well as their relationship
with the person. The patient’s needs and wishes must be respected. Patients need time to ponder
their thoughts 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 of time 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 and adapting to change. Grief is dynamic and includes both
psychologic and physiologic responses following a loss. Psychologic responses can include anger,
guilt, anxiety, sadness, depression, and despair. Physiologic reactions can include sleeping
problems, changes in appetite, physical problems, or illness.
Grief is one of the most powerful emotional states and affects all aspects of a person's life. It
is a complex and intense emotional experience. Kiibler-Ross, Martocchio, and Rando have each
identified stages of grie.
The manner in which a person grieves depends on factors such as the relationship with the
person who has died (e.g., spouse), physical and emotional coping resources, concurrent life
stresses, and personality. There may be issues related to events (e.g., disease progression,
caregiving activities) that occurred before the death that may affect the grief response. 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. Acceptance of the expected loss is associated
with more positive outcomes. Additional factors that affect the grief response include mental and
physical health, economic resources, cultural beliefs, religious influences or spiritual beliefs, and
time spent preparing for the death.
Working in a positive way through the grief process helps adapt to the loss. Grief that assists
the person in accepting the reality of death is called adaptive grief. Adaptive grief is a healthy
response. It may be associated with grieving before a death actually occurs or when the reality that
death is inevitable is known. Indicators of adaptive grief include the ability to see some good
resulting from the death and positive memories of the deceased person. The grieving process takes
time, energy, and work. The process of resolution in normal grief may take months to years. Goals
for the grieving process both before and after the death include resolving emotions, reflecting on
the dying person, expressing feelings of loss and sadness, and valuing what has been shared.
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 distressing emotions and intrusive thoughts related to the loss
of a loved one, severe pangs of emotion, self-neglect, and denial of the loss for longer than 6
months. It is estimated that one in five bereaved individuals experiences prolonged grief. Those
who experience prolonged grief disorder are at great risk for illness and have work and social
impairments.
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. Grief support should be incorporated into the plan of care for family
members and significant others during the patient’s illness, as well as after the death.
Patients at the end of life can also experience grief. Goals for grief resolution include patient
expression of feelings related to grief, acknowledgment of the impending loss, and demonstrations
of behaviors that reflect progress in grief resolution. Priority interventions for grief must focus on
providing an environment that allows the patient to express feelings. Open discussion of feelings
helps both the patient and family work toward resolution of the grief process. The patient should
be free to express feelings of anger, fear, or guilt. The patient and family need to know that the
grief reaction is normal. 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. Spiritual needs do not
necessarily equate to religion. A person may be of no particular faith but have a deep spirituality.
Many times at the end of life, patients question their beliefs about a higher power, their own
journey through life, religion, and an afterlife. Some patients may choose to pursue a spiritual path.
Some may not. Their individual choice needs to be respected. The patient’s and family’s
preferences related to spiritual guidance or pastoral care services should be noted and appropriate
referrals made.
Deep-seated spiritual beliefs may surface for some patients when they deal with their
terminal diagnosis and related issues. Spiritual distress may occur. Characteristics of spiritual
distress include anger toward God or a higher being, change in behavior and mood, desire for
spiritual assistance, displaced anger toward religious representatives, or display of “gallows
umor.”
Spirituality has been associated with decreased despair in patients at the end of life. Some
dying patients are secure in their faith about the future. It is common to observe patients
relinquishing material values of life and focusing on values they believe will lead them on to
another place. Many turn to religion because religion may provide order to the world even in the
presence of physical decline, social losses, suffering, and impending death. It may offer an
existential meaning that provides a sense of peace and recognition of one's place in the broader
cosmic context.
Hospice care, palliative care, and home care focus on support and care of the dying person
and family, with the goal of facilitating a peaceful and dignified death. Hospice care is based on
holistic concepts that emphasize care to improve the quality of life rather than cure. The hospice
movement was founded by the physician Cecily Saunders in London, England, in 1967 and was
later extended to the United States by Sylvia Lack, also a medical doctor.
The principles of hospice care can be carried out in a variety of settings, the most common
being the autonomous hospice and the hospice-based palliative care unit. Palliative care is special
care that is challenging and requires skillful interpersonal relationships and compassion. Services
range from comprehensive to a focus on selected areas, such as symptom control and pain
management, in some palliative care units. Home care services for the dying client maintain the
client in the natural home environment until that is no longer possible or until death. Hospice
care is always provided by a team of both health professionals and nonprofessionals to ensure a
full range of care services.
Meeting Physiologic Needs of the Dying Client
The physiologic needs of people who ate dying are related to a slowing of body processes
and to homeostatic imbalances. Interventions include providing personal hygiene measure;
controlling pain; relieving respiratory difficulties; assisting with movement, nutrition, hydration,
and elimination; and providing measures related to sensory changes.
Problem and Nursing Interventions
1.Ineffective Airway Clearance
(1)Fowler's position, conscious clients
(2)Throat suctioning, conscious clients
(3)Lateral position: unconscious clients
2.Self Care Deficit: Bathing/Hygiene
Frequent baths and linen changes if diaphoretic Mouth care as needed for dry mouth
3.Impaired Physical Mobility
(1)Assist client out of bed periodically, if client is able Regularly change bedridden client's
position
(2)Support client's position with pillows, blankets rolls, or towels as needed
(3)Elevate client's legs when sitting up, to prevent pooling of blood
4.Altered Nutrition: Less than Body Requirements
Antiemetics or small amount of alcoholic beverage to stimulate appetite
5.Constipation
(1)Encourage liquid foods as tolerated
(2)Dietary fiber as tolerated
(3)Laxatives as needed to prevent constipation
6.Altered Urinary Elimination
(1)Skin care in response to incontinence of urine or feces
(2)Bedpan, urinal, or commode chair within easy reach
(3)Call light within reach for assistance onto bedpan or commode
(4)Absorbent pads placed under incontinent client; linen changed as often as needed
(5)Catheterization, if necessary
(6)Keep room as clean and odor-free as possible
7.Sensory/Perceptual
Clients prefer a light room
8.Alterations: Visual , Tactile
(1)Hearing is not diminished: speak clearly and do not Whisper
(2)Touch is diminished, but client will feel pressure of touch
Pain control
Pain control is essential to enable clients to maintain some quality tin their life and their daily
activities, including eating, moving, and sleeping. Many drugs have been used to control the pain
associated with terminal illness, morphine, methadone, alcohol, marijuana, and: so on. Usually the
physician determines the dosage, but the client's opinion should be considered; the client is the
one ultimately aware of personal pain tolerance and fluctuations of internal states. Because
physicians usually prescribe dosage ranges· for pain medication, nurses use their own judgment as
to the amount and frequency of pain medication in providing client relief. Because of decreased
blood circulation, analgesics may be administered by intravenous infusion or sublingually, rectally,
or transdermally rather than subcutaneously or intramuscularly.
Providing Spiritual Support
Spiritual support is of great importance in dealing with death. Although not all clients
identify with a specific religious faith or belief, the majority has a need for meaning in their lives,
particularly as they experience a terminal illness.
The nurse has a responsibility to ensure that the client's spiritual needs are attended to, either
though direct intervention or by arranging access to individuals who can provide spiritual care.
Nurses need to be aware of their own comfort with spiritual issues and be clear about their own
ability to interact supportively with the client. Nurses have a responsibility for not imposing their
own religious or spiritual beliefs on a client but to respond to the client in relation to the client's
own background and needs. Communication skills are most important in helping the client
articulate needs and in developing a sense of caring and trust.
Specific intervention may include facilitating expressions of feeling, meditation, reading:,
and discussion with appropriate spiritual adviser. It is important for nurses to establish an effective
interdisciplinary relationship with spiritual support specialists.
Supporting the Family
The most important aspects of providing support to the family members of a dying client
involve using therapeutic communication to facilitate their expression of feelings. When no
interventions can reverse the inevitable dying process, the nurse can provide an empathetic and
caring presence. The nurse also serves as a teacher, expect. Due to the effects of the stress of
moving through the grieving process, family members may not absorb what they are told and need
to have information provided repeatedly. The nurse must have a calm and patient demeanor.
Postmortem Care
Rigor mortis is the stiffening of the body that occurs about 2 to 4 hours after death. It results
from a lack of adenosine triphosphate (ATP), which is not synthesized because of a lack of
glycogen in the body. A TP is necessary for muscle fiber relaxation. Its lack causes the muscles to
contract, which in turn immobilizes the joins. Rigor mortis starts in the involuntary muscles (heart,
bladder, and so on), then progresses to the head, neck, and trunk, and finally reaches the
extremities.
Because the deceased person's family often wants to view the body, and because it is
important that the deceased appear natural and comfortable, nurses need to position the body,
place dentures in the mouth, and close the eyes and mouth before rigor mortis sets in. Rigor mortis
usually leaves the body about 96 hours after death.
Algor mortis is the gradual decrease of the body's temperature after death. When blood
circulation terminates and the hypothalamus ceases to function, body temperature falls about 1°C
per hour until it reaches room temperature. Simultaneously, the skin loses its elasticity and can
easily be broken when dressings and adhesive tape are removed.
After blood circulation has ceased, the red blood cells break down, releasing hemoglobin,
which discolors the surrounding tissues. This discoloration, referred to as livor mortis, appears in
the lowermost or dependent areas of the body.
Tissues after death become soft and eventually liquefied by bacterial fermentation. The hotter
the temperature, the more rapid the change. Therefore, bodies are often stored in cool places to
delay this process. Embalming prevents the process through injection of chemicals into the body
to destroy the bacteria.
It may be responsible for nurses to care of a body after death. Postmortem care should be
carried out according to the policy of the hospital or agency. Because care of the body may be
influenced by religious law, the nurse should check the client's religion and make every attempt to
comply. If the deceased's family or friends wish to view the body, it is important to make the
environment as clean and pleasant as possible and to make the body appear natural and
comfortable. All equipment, soiled linens, and supplied should be removed from the bedside.
Some agencies, tubes, and others may be removed.
Normally the body is placed in a supine position with the arms either at the sides, palms
down, or across the abdomen. One pillow is placed under the head and shoulders to prevent blood
from discoloring the face by settling in it. The eyelids are closed and held in place for a few
seconds so they remain closed. Dentures are usually inserted to help give the face a natural
appearance. The mouth is then closed.
Soiled areas of the body are washed; however, a complete bath is not necessary, because the
body will be washed by the mortician. Absorbent pads are placed under the buttocks to take up
any feces and urine released because of relaxation of the sphincter muscles. A clean gown is
placed on the client, and the hair is brushed and combed. Tle top bed linens are adjusted neatly to
cover the client to the shoulders. Soft lighting and chair are provided for thefamily.
In the hospital, after the body has been viewed by the family, additional identification tags
are applied. The body is wrapped in a shroud, a large piece of plastic or cotton material used to
enclose a body after death. Identification is then applied to the outside of the shroud. The body is
taken to the morgue if arrangements have not been make to have a mortician pick it up from the
client's room.