End of Life Care
End of Life Care
END-OF-LIFE CARE
Submitted by:
ARIF RAKHMAN
MANILA
2014
END-OF-LIFE CARE
INTRODUCTION
Nurses can have a significant and lasting effect on the way in which patients
live until they die, the manner in which the death occurs, and the enduring
memories of that death for the families. Nursing has a long history of holistic,
person-centered and family-centered care. Indeed, the definition of nursing
highlights nursings commitment to the diagnosis and treatment of human
responses to illness (American Nurses Association [ANA], 2003). There may be no
setting or circumstance in which nursing carethat is, attention to human
responsesis more important than in caring for dying patients.
Knowledge about end-of-life principles of care and patients and families
unique responses to illness are essential to supporting their unique values and
goals. There is an opportunity to bring research, education, and practice together
to change the culture of dying, bringing much-needed improvement to care that
is relevant across practice settings, age groups, cultural backgrounds, and
illnesses.
Education about death helps healthcare professionals to be better informed
about dying and death and to incorporate this knowledge into the care they give
clients. Nurses who care for dying clients share emotional pain with them and
their families. Denying death creates a barrier to becoming involved with clients
and families and interferes with personal growth.
Death can occur in any healthcare setting; therefore, facing the death of
clients is necessary for nurses. It is not partial to a particular age group or
population. Death can be slow and tortuous or very sudden and unexpected.
Preparing clients and their families for an expected death is usually very different
from caring for grieving family members after an unexpected death. Recognizing
that nursing care always requires sensitivity and compassion for clients, families,
and significant others is an essential component of quality care.
HOSPICE CARE
Hospice is a coordinated program of interdisciplinary services provided by
professional caregivers and trained volunteers to patients with serious,
progressive illnesses that are not responsive to cure. Hospice in the United
States is not a place but a concept of care in which the end of life is viewed as a
developmental stage. The root of the word hospice is hospes, meaning host.
According to Cicely Saunders, who founded the world-renowned St. Christophers
Hospice in London, the principles underlying hospice are as follows:
1. Death must be accepted.
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final days with comfort, dignity, and meaningfulness. Hospice care emphasizes
helping clients live however the wish until they die. Clients receive services that
relieve their physical symptoms and emotional distress and promote spiritual
support. Pain is liberally controlled (Timby & Smith, 2010).
The goal of hospice is to enable the patient to remain at home, surrounded by
the people and objects that have been important to him or her throughout life.
The patient and family make up the unit of care. Hospice care does not seek to
hasten death or encourage the prolongation of life through artificial means.
Hospice care hinges on the competent patients full or open awareness of
dying; it embraces realism about death and helps patients and families
understand the dying process so that they can live each moment as fully as
possible.
Since 1983, the Medicare Hospice Benefit has covered costs of hospice care
for Medicare beneficiaries. State Medical Assistance (Medicaid) also provides
coverage for hospice care, as do most commercial insurers. To receive Medicare
payment for hospice services, programs are required to comply with rules known
as conditions of participation, which are enforced by the Centers for Medicare
and Medicaid Services. In many aspects, Medicare standards have come to
largely define hospice philosophy and services.
Eligibility criteria for hospice vary depending on the hospice program, but
generally patients must have a progressive, irreversible illness and limited life
expectancy and must opt for palliative care rather than cure-focused treatment.
According to Medicare, the patient who wishes to use his or her
Medicare Hospice Benefit must be certified by a physician as terminally ill,
with a life expectancy of 6 months or less if the disease follows its natural
course. Thus, hospice has come to be defined as care provided to terminally ill
persons and their families in the last 6 months of the patients life. Because of
additional Medicare rules concerning completion of cure-focused medical
treatment before the Medicare Hospice Benefit may be accessed, many patients
delay enrollment in hospice programs until very close to the end of life.
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2.
3.
4.
5.
6.
Offers a support system to help the family cope during the patients illness
and their own bereavement
7.
Uses a team approach to address the need of patients and their families,
including bereavement counseling
8.
9.
Care provided by all team members is holistic and directed by the patient and
family. Best practice in palliative care uses the strengths of the interdisciplinary
team. The leader of the team is the person, regardless of discipline, who knows
the most about issue at hand. This strategic, since not all symptoms arise from a
physical need. Dyspnea may occur due to anxiety, pain can be exacerbated by
depression and restlessness may be a result of spiritual conflict.
Palliative care nurses act as patient advocates, case managers, and symptoms
assessment and management experts. The nurses primary role in palliative care
is to establish a trusting relationship with the patient and family and to
coordinate care across all disciplines and health care settings. Quality of life and
death with dignity can be achieved with a treatment plan that fosters the
patients physical, psychosocial, spiritual and family well-being. Patients perceive
high quality end of life care as including adequate pain and symptom
management, avoiding inappropriate prolongation of dying, achieving a sense of
control, relieving the burden of loved ones, and strengthening relationship with
loved ones and a higher power. Other factors important to high quality end of life
care vary by role, developmental stage and personal preferences.
Developmental Vies of Death:
AGE
Birth to 2
yr
2-5 yr
6-12 yr
DEVELOPMENTAL
STAGES
Infancy
Early childhood
Late childhood
13-25 yr
Adolescence
Young adulthood
26-65 yr
Middle age
Other auldthood
The palliative care plan includes care goals, advance care planning, financial
planning, symptom management, family support, spiritual care, functional
support status and rehabilitation, and comorbid disease management.
1. Palliative care goal
The nurse ascertains the patients understanding and desire to know about
the diagnosis and prognosis so that the palliative care interdisciplinary team
can construct the most effective plan to manage the disease and its
symptoms. Family meeting are an effective forum to discuss the patient and
familys goals, hopes, and expectations of treatment. Acting as facilitator, the
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Throughout the dying process, and particularly at the very end of life, the
nurse must be aware of cultural and religious values, practices, and
traditions of the patient and the family. Religious and ethnic group practices
regarding postmoterm care vary in the worldwide. Although it is possible to
generalize about the practices of various group or religious, the nurse must
avoid stereotyping.
c. Phase 3: After death
Once he patient has died, the family has many decisions to make or
plans to carry out, depending on whether the patient has already arranged
to funeral. Choices include organ donation, cremation, traditional burial or
internment the body. For same family, the wake, or visitation, is the first
component of postdeath ritual. It is a time for family and friends to view the
death body emphasize that the person is dead; declining to see the body
may delay grieving.
The second component of postdeath ritual is the funeral. It is a
ceremonial service that typically includes music, prayers, poetry, and
eulogies. Some people plan their funeral before they die, which can be
comforting to both the dying person and family. The last ritual is the
committal service, the concluding funeral rite. It is the final act of caring for
the deceased and is celebrated at the grave, tomb, or crematorium.
6. Family support
In palliative care the family is whomever the patient calls family; another
term is family of choice. The nurse asks the patient and family about practical
support needs such as transportation, prescription drug coverage, respite care
and personal care. Counseling can help patient and family reconnect and build
relationships. The nurse should establish relationships with all significant
family and friends so that he or she can provide follow-up bereavement
support after patients death. The nurse encourages family and friends to
assist in care if they desire. The patient and the family together are
considered the unit of care. Care givers are prone to negative physical, social,
and emotional effect of caring for individuals with chronic and serious
conditions. By including the care givers in the unit of care, the nurse can
ensure all benefit from the positive outcomes of palliative care.
7. Cultural care
It is assumed in Western culture that the patient is the best person to make
health care decisions. In non-Western cultures the family or community has a
vital role in receiving, organizing, and disclosing information needed to make a
decision regarding care. Establishing rapport with the patient and family
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8. Spiritual care
Nurses are not expected to be experts in spiritual assessment and care
giving, yet they may assist the patient in acknowledging the meaning and last
effects of a life lived. Nurses are pivotal in the process of spiritual assessment
because of their frontline health care position, role as coordinator, intimacy
with the patient and holistic perspective on care. Individuals who life with an
irreversible disease often consider aspects of spirituality a major contributing
factor to quality of life and death with dignity.
Spirituality is an important component of many patients physical well-being
and mental health. The nurse addresses it at each visit, since spirituality is an
ongoing issue. The nurse portrays an attitude of acceptance by respecting the
patients right to privacy regarding spiritual beliefs, not imposing personal
beliefs on others, and referring the patient to the clergy of choice or palliative
care clergy for additional spiritual support as needed. Personal spiritual beliefs
overflow in encounters with patients. When health care providers understand
their own values and beliefs, it allows the nurse-patient encounter to become
more humanistic and effective.
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The following overview of religious and cultural beliefs and views on death
and dying in many religions according to Firth (2005), Dorff (2005),Keown
(2005), Sachedina (2005), Engelhardt & Smith (2005).:
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A wide range of feelings and behaviors are normal, adaptive, and healthy
reactions to the loss of a loved one. Grief refers to the personal feelings that
accompany an anticipated or actual loss. Mourning refers to individual, family,
group, and cultural expressions of grief and associated behaviors. Bereavement
refers to the period of time during which mourning takes place. Both grief
reactions and mourning behaviors change over time as people learn to live with
the loss. Although the pain of the loss may be tempered by the passage of time,
loss is an ongoing developmental process, and time does not heal the bereaved
individual completely. That is, the bereaved do not get over a loss entirely, nor
do they return to who they were before the loss. Rather, they develop a new
sense of who they are and where they fit in a world that has changed
dramatically and permanently.
Denial, sadness, anger, fear, and anxiety are normal grief reactions in people
with life-threatening illness and those close to them. Kbler-Ross (1969)
described five common emotional reactions to dying that are applicable to the
experience of any loss.
Stage
Denial: This cannot be true.
Feelings of isolation. May
search for another health
care professional who will
give a more favorable
opinion. May seek unproven
therapies.
Nursing Implications
Denial can be an adaptive response, providing a buffer after
bad news. It allows time to mobilize defenses but can be
maladaptive when it prevents the patient or family from
seeking help or when denial behaviors cause more pain or
distress than the illness or interfere with everyday
functions. Nurses should assess the patients and familys
coping style, information needs, and understanding of the
illness and treatment to establish a basis for empathetic
listening, education, and emotional support. Rather than
confronting the patient with information he or she is not
ready to hear, the nurse can encourage him or her to share
fears and concerns. Open-ended questions or statements
such as Tell me more about how you are coping with this
new information about your illness can provide a
springboard for expression of concerns.
Anger can be very isolating, and loved ones or clinicians
may withdraw. Nurses should allow the patient and family
to express anger, treating them with understanding,
respect, and knowledge that the root of the anger is grief
over impending loss.
Terminally ill patients are sometimes able to outlive
prognoses and achieve some future goal. Nurses should be
patient, allow expression of feelings, and support realistic
and positive hope.
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Not every patient or family member experiences every stage; many patients
never reach a stage of acceptance, and patients and families fluctuate on a
sometimes daily basis in their emotional responses. Furthermore, although
impending loss stresses the patient, people who are close to him or her, and the
functioning of the family unit, awareness of dying also provides a unique
opportunity for family members to reminisce, resolve relationships, plan for the
future, and say goodbye.
The nurse should assess the characteristics of the family system and
intervene in a manner that supports and enhances the cohesion of the family
unit. The nurse can suggest that family
members talk about their feelings and understand them in the broader context of
anticipatory grief and mourning. Acknowledging and expressing feelings,
continuing to interact with the patient in meaningful ways, and planning for the
time of death and bereavement are adaptive family behaviors. Professional
support provided by grief counselors, whether in the community, at a local
hospital, in the long-term care facility, or associated with a hospice program, can
help both the patient and the family sort out and acknowledge feelings and make
the end of life as meaningful as possible.
When a loved one dies, the family members enter a new phase of grief and
mourning as they begin to accept the loss, feel the pain of permanent
separation, and prepare to live a life without the deceased. Even if the loved one
died after a long illness, preparatory grief experienced during the terminal illness
does not preclude the grief and mourning that follow the death. With a death
after a long or difficult illness, family members may experience conflicting
feelings of relief that the loved ones suffering has ended, compounded by guilt
and grief related to unresolved issues or the circumstances of death. Grief work
may be especially difficult if a patients death was painful, prolonged,
accompanied by unwanted interventions, or unattended. Families who had no
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preparation or support during the period of imminence and death may have a
more difficult time finding a place for the painful memories.
After-death rituals, including preparation of the body, funeral practices, and
burial rituals, are socially and culturally significant ways in which family
members begin to accept the reality and finality of death. Preplanning of funerals
is becoming increasingly common, and hospice professionals in particular help
the family make plans for death, often involving the patient, who may wish to
play an active role. Preplanning of the funeral relieves the family of the burden of
making decisions in the intensely emotional period after a death.
In general, the period of mourning is an adaptive response to loss during
which mourners come to accept the loss as real and permanent, acknowledge
and experience the painful emotions that accompany the loss, experience life
without the deceased, overcome impediments to adjustment,
and find a new way of living in a world without the loved one. Particularly
immediately after the death, mourners begin to recognize the reality and
permanence of the loss by talking about the deceased and telling and retelling
the story of the illness and death. Societal norms in the United States are
frequently at odds with the normal grieving processes of people; time excused
from work obligations is typically measured in days, and mourners are often
expected to get over the loss quickly and get on with life.
In reality, the work of grief and mourning takes time, and avoiding grief work
after the death often leads to long-term adjustment difficulties. According to
Rando (2000), mourning for a loss involves the undoing of psychosocial ties
that bind mourners to the deceased, personal adaptation to the loss, and
learning to live in the world without the deceased. Six key processes of mourning
allow people to accommodate to the loss in a healthy way:
1. Recognition of the loss
2. Reaction to the separation, and experiencing and expressing the pain of the
loss
3. Recollection and reexperiencing the deceased, the relationship, and the
associated feelings
4. Relinquishing old attachments to the deceased
5. Readjustment to adapt to the new world without forgetting the old
6. Reinvestment
Although many people complete the work of mourning with the informal
support of families and friends, many find that talking with others who have had
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withheld, while research shows that only about 5% of patients who require
CPR outside the hospital and only 15% of patients who require CPR while in
the hospital survive. Patients who are elderly, are living in nursing homes,
have multiple medical problems, or who have advanced cancer are much less
likely to survive.
A DNR does not affect any treatment other than that which would
require intubation or CPR. Patients who are DNR can continue to get
chemotherapy, antibiotics, dialysis, or any other appropriate treatments. In
1991 Congress passed into law the Patient Self-Determination Act that
mandated hospitals honor an individual's decision in their healthcare.
2. Assisted suicide
Assisted suicide refers to providing another person the means to end his or
her own life. Physician-assisted suicide involves the prescription by a physician
of a lethal dose of medication for the purpose of ending someones life.
Assisted suicide is suicide committed with the aid of another person,
sometimes a physician. The term is often used interchangeably with physicianassisted suicide (PAS), which involves a doctor "knowingly and intentionally
providing a person with the knowledge or means or both required to commit
suicide, including counselling about lethal doses of drugs, prescribing such
lethal doses or supplying the drugs. Assisted suicide and euthanasia are
sometimes combined under the umbrella term "assisted dying", an example of
a trend by advocates to replace the word "suicide" with "death" or ideally,
"dying". Other euphemisms in common use are "physician-assisted dying",
"physician-assisted death", "aid in dying", "death with dignity", "dying with
dignity", "right to die" "compassionate death", "compassionate dying", "endof-life choice", and "medical assistance at the end of life".
Physician-assisted suicide is often confused with euthanasia (sometimes
called "mercy killing"). In cases of euthanasia the physician administers the
means of death, usually a lethal drug. Physician-assisted suicide (PAS) is
always at the request and with the consent of the patient, since he or she selfadministers the means of death.
In 1994-1997, Oregon voters approved the Oregon Death With Dignity Act 341 persons who have died. In November 2008, voters approved The
Washington Death with Dignity Act. ANA: nursing participation in assisted
suicide is a violation of the Code for Nurses.
3. Euthanasia
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REFERENCES:
American Nurses Association (ANA). (2003). Nursings social policy statement
(2nd ed.). Washington, DC: Author.
Dorff, E. N. (2005). End of life: Jewish perspectives. Lancet, 366(9488),862865.
Engelhardt, H. T. & Smith Iltis, A. (2005). End of life: The traditional Christian
view. Lancet, 366(9490), 10451049.
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