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Purpose
and Goals
 The
purpose of this course is to present the essential concepts of palliative
care, with emphasis on emotional, psychosocial, spiritual and family
issues; pain management and the rights of the patient to self determination
and decision making are also discussed.
Instructional Objectives
Upon
completion of this course, the motivated learner will be able to:
- Define and characterize palliative care.
- State the role of palliative care and symptom management in end of
life care.
- Summarize nursing interventions that are useful in managing pain
in a person having a terminal condition.
- Define strategies to communicate effectively with client and family
about death and dying.
- Outline ways to address the emotional and spiritual concerns of the
dying client.
- Define pain and pain tolerance.
- List factors that influence pain perception.
About the Author
Angeline
Bushy, PhD, RN, CNS, CHN is the Bert Fish Endowed Chair, School of
Nursing, at the College of Health and Public Affairs. She has practiced
in a variety of rural health care settings, including clinical as well
as educational settings. She has published extensively, including three
textbooks, and presented various aspects of rural healthcare delivery
at numerous national and international conferences.
Introduction
Palliative
Care: What is it? How does it relate to life and end-of-life issues?
Many healthcare professionals (HCPs) subscribe to the notion that death
is simply another dimension of life – a transition of living.
This perspective of death as a major life transition should be the
focus of care for a client in the last stages of life.
Palliative care is care which is intended to relieve the symptoms of a disease
that cause the patient to suffer, but which is not expected to cure the disease.
This continuing education program focuses on the activities of health professionals
that are involved in providing this type of care. For this program, we will focus
on assisting and providing support to a person who is in the end stage of life,
as well as to his or her family system. Please note that in all cases it is the
client and their family system that establish priorities for care: the role of
the health professional is to support the family system in achieving their unique
goals. The term “family system” is broad and encompassing: it includes
the client’s significant other(s), immediate and extended family members,
friends, and in some instances even the community. Each person defines who is
included in the family system, and this group will vary from person to person.
Health professionals in general, direct caregivers in particular, are in an ideal
position to assist, and even provide alternative perspectives to, a person in
their care, and to allow their client to be open about feelings as well. Opportunities
for meaningful interactions can be especially evident when administering personal
care to the client in their home. A certain intimacy can be established while
assisting a person with the usual and ordinary things of life such as preparing
meals, doing housekeeping activities, and completing personal care.
An expected outcome of this course is that healthcare professionals will learn
to be more comfortable with patients with terminal illness and be able to put
into practice effective and compassionate end-of-life care.
Quality Palliative Care
Palliative
care and symptom management are the essence of care for a client experiencing
end stage disease symptoms. They are directed toward promoting a high
quality of life, relief of suffering, and supporting a peaceful death.
They encompass the active and total care of people whose disease is
not responsive to curative treatment.
Diagnostic procedures and special treatments such as chemotherapy, radiation,
nutritional augmentation, pharmacotherapies, and in some cases even surgery,
may have a place in palliative care. These interventions are ordered by the physician
if the benefits in providing relief of symptoms outweigh the disadvantages of
not having it. The goal of any intervention in palliative care is to improve
the quality of life for the person by managing the symptoms as opposed to controlling
or curing the disease.
“The only
courage that matters is the kind that gets you from one moment to the
next.”
- Mignon McLaughlin
Palliative
care focuses on the relief of suffering when the underlying disease
cannot be cured. Suffering is described as a state of severe distress
that often is associated with events that threaten a person’s
intactness as a human being. Hence, suffering is viewed more broadly
than simply experiencing physical pain. Rather, the whole person
experiences suffering: having pain in the mind and spirit as well
as one’s body. Moreover, the physical symptoms will vary
with different diagnoses, affected body systems, progression of
the end
stage disease, and impact of these factors on the individual person.
For example, nearly 75% of people with cancer experience pain at
some time during their illness. But other conditions produce pain
as well, including heart disease, AIDS, decubitus ulcers, and neuropathy.
Different interventions may be needed to manage the pain experienced
by different clients with different diseases.
In
addition to pain, there may be other physical symptoms experienced
by the client receiving palliative care. For example:
- Neurological
symptoms including seizures, paralysis, or changes in mental status such
as lethargy, confusion, agitation, or hallucinations; sensory and perceptual
changes.
- Cardiovascular
symptoms such as edema, syncope, hemorrhage, or angina.
- Respiratory
symptoms such as dyspnea, cough, or congestion.
- Gastrointestinal
symptoms such as nausea, vomiting, anorexia and cachexia, constipation,
diarrhea, prolonged or continuous hiccups.
- Genitourinary
symptoms such as incontinence, retention or dysuria.
- Musculoskeletal
symptoms such as weakness, fatigue, pathologic fractures, contractures
and spasms.
- Integumentary
(skin and mucous membranes) symptoms such as pressure ulcers, ulcerative
lesions, dry mouth, oral lesions, infections and pruritus.
Consequently, in addition to assisting with or providing routine activities
of daily living during care, special therapies may be ordered by the
physician to relieve or manage symptoms. For instance, nutritional, physical,
occupational, or speech therapy may be ordered for persons with a chronic
disease or debilitating condition to maintain a certain quality of life
during the end stages of the condition. Such interventions may also help
to maintain a greater degree of mobility or enable one to participate
in activities of daily living for a longer period of time. Medical supplies
and durable medical equipment also can be helpful in palliative care
and symptom management, such as hospital beds with special features;
oxygen, intravenous, and enterostomy therapies; and wheelchairs and other
comfort devices. In addition to improving comfort, durable equipment
and medical supplies can help to provide a safer environment for the
client as well as caregivers.
Management
of Specific Symptoms
Symptom
management in many cases is the most important activity in providing
care to a client. Symptoms will vary from person to person, and his or
her particular health problems or diagnosis. Likewise, the symptoms will
change in intensity, frequency and duration as the disease progresses.
Carefully listening to what the client is telling you, observing and
assessing for changes from the baseline status, then intervening early
on can go a long way to managing symptoms in the client.
Symptoms encountered in palliative care that cause an intense degree of discomfort
include nausea, vomiting, anorexia, pain, skin breakdown and decubitus ulcers,
urinary and bowel irregularities, and respiratory problems. If these cannot be
managed at home, short-term inpatient care may be provided for symptom control,
respite care, or terminal care (when death is imminent).
Emotional
and Communication Support
Health
professionals (HCPs) providing palliative care must be sensitive to the
reality that depression, anxiety, and sleep disorders may be present
and may cause physical or emotional symptoms. Furthermore, unique psychosocial
issues accompany terminal illness. Emotional responses such as denial,
anger, sadness, acceptance, and hope may vary from day to day and may
differ between the client and the various members of the family.
Coping skills to deal with the loss of the loved one also may be limited, or
dysfunctional, in some family systems. Moreover, even family systems that have
effective coping abilities may find relationships strained at some time or another
during a terminal illness.
Obviously, one of the most critical components of palliative care is effective
communication between and among the client, caregivers and family members. Caregivers
involved in terminal care must be aware of the opportunity and carefully listen
for an opening for communication on the part of the client. Most dying persons
want to talk about the process of their own death with loved ones. Oftentimes,
family members feel extreme discomfort with the topic, and are unable to participate
in discussions of death and dying. In these situations, health professionals
can lead the way and assist the family system to feel that it is okay to talk
about death and dying within the family.
Many times, actually saying the words “death” and “dying” provides
an opening for communication to begin on the topic. If the caregiver is comfortable
with those words, that in and of itself can help others to feel more comfortable
talking about the highly sensitive topics of death, loss and grieving. In one
case Mary, 72 years old, had end stage cardiac disease and was having trouble
making a decision about continuing to live at home. Mary wanted to remain at
home but her family was very concerned about her living alone. When asked what
she believed their real concern to be Mary said, “I think my family is
afraid they will come into my home and find me dead.” When asked if she
was afraid to die at home or even alone, her response was, “Heavens, no!
This is where I want to spend my last days. I want to die where I lived for the
last 50 years with my husband and children. My husband died in our house 7 years
ago. This is where I belong.”
Her case manager informed Mary, the client in this case, that she was capable
of making her own decision. To help reduce the family’s anxiety, Mary agreed
to carry a portable phone with automated dialing for quick access to her family
and doctor. This strategy reassured the family, and it allowed Mary to live at
home even with the seriousness of her illness. In the end, upon making a routine
home visit, Mary’s nurse found her deceased in bed. In essence, the care
plan for this woman focused on assisting her to live and die in the manner she
desired.
Meeting
the Spiritual Needs of the Dying
Often
when health professionals talk about spiritual care, or the spiritual
needs of their clients, they think of providing that person with the
opportunity to participate in some specific religious ritual, such as
the sacrament of communion or last rites. Or they offer to call the person’s
rabbi, priest, or minister.
Yet, spiritual needs can be more concretely and broadly defined, if one will
move from looking at the symbols of a person’s relationship to God to the
essence of that relationship itself. The basic spiritual needs of all persons
are:
1. the need for meaning and purpose
2. the need for love and relatedness
3. the need for forgiveness
Throughout history mankind has searched for the meaning of life, and this search
has been the primary motivation for many of life’s richest and most satisfying
experiences. For many, ultimate hope and meaning comes from a relationship with
God. This bond is especially important for the person searching for meaning in
the face of death. Reliance on people and worldly achievements falls away as
they will all be left behind, and the focus is increasingly on the unknown future.
Those who have a relationship with God can contemplate that future with hope
and a sense of peace.
The need for love and to be in relationship with others is also a profound spiritual
need. The dying person is no longer in a position to earn love from other people
or tries to meet the conditions required to obtain or maintain their love. The
only true and lasting source of unconditional love is God, and the dying person
may turn increasingly toward God for that love. Guilt is one of the biggest burdens
of one’s life, and it comes from the sense of failure to live up to expectations,
either one’s own or those of others, or of God. The dying person needs
time to settle differences and to receive forgiveness from God and from others
if he is to die in true peace.
Is it appropriate for a nurse to be interested and involved in meeting the spiritual
needs of the client? Absolutely! When assessing the spiritual needs of the dying,
it is important to evaluate each situation carefully, using the nursing process.
Spiritual care should not be given haphazardly or with pat answers. Each individual
is unique, and so are his needs.
Healthcare professionals may use their own spiritual selves in a therapeutic
way to address the spiritual needs of the client. To do so, the healthcare professional
affirms each patient as a person worthy of our time and involvement, and relates
to each in a supportive, caring way. In essence this is a process of ‘being’ as
opposed to ‘doing’. To relate to people in this way means that the
caregiver must be confident in who she is and what she believes, and this requires
facing and resolving her own issues regarding death and dying.
Be
strong and courageous. Do not be afraid or terrified because of them,
for the Lord you God goes with you; He will never leave you nor forsake
you. – Moses, Deuteronomy 31:6
Therapeutic
use of self involves skills such as listening, empathy, vulnerability,
humility, and commitment. It is a difficult task, but it can be accomplished
with faith, education, and practice. The HCP must be willing to continue
in the relationship as long as that person needs spiritual support. He
will experience pain and grief when he gets involved with his clients in
this way, but there is tremendous reward in knowing that one has helped
the dying person through one of the most difficult and stressful times
of life.
Pain
Management—Medical and Alternative Therapies
Pain management is an important component of palliative care. In
recent years major contributions have been made to nursing research
literature regarding protocols for pain relief. The holistic view
of pain and its’ management includes attention on the part
of the caregiver to physical, emotional, social, and spiritual needs.
Adequate availability and doses of analgesics, including narcotics;
around-the-clock scheduling; and the use of co-analgesics and other
non-drug interventions have made the control of pain an attainable
goal. Throughout the care process, the client is central in making
decisions about pain management. Judicious use of prescriptive and
non-prescriptive drugs can greatly enhance the quality of life by
providing relief from pain and other discomforts such as nausea,
vomiting, and diarrhea.
Analgesia includes not only drug therapy, but also non-pharmacological interventions
such as imagery, massage, therapeutic touch, music therapy, and meditation. The
goal of therapy is to keep the client comfortable, as defined by the client,
without overly clouding mental and cognitive functions necessary to the client’s
participation in the activities of daily life. Fears of addiction to narcotics
frequently are a concern to clients and families as well as healthcare professionals.
Thus, teaching about pain management and facilitating the expression of beliefs
about the use of medications are critical interventions if these are to be used
effectively in palliative care and symptom management.
In fact, the American Pain Society suggests that pain rating be treated as the
fifth vital sign (in addition to blood pressure, pulse, respiration, and temperature).
Nurses can help improve and manage this aspect of care through assessment, planning,
intervention, education and counseling of the patient and family system. As a
basic scientific definition, pain is a sensation caused by some type of noxious
stimulus. From the behavioral aspect, pain is a pattern of responses that function
to protect an individual from harm.
The World Health Organization (WHO) has devised a simple, widely used, and effective
approach to pharmacotherapy for cancer pain. The five essential concepts in the
WHO approach to drug therapy of pain are:
•
By the mouth.
•
By the clock.
•
By the ladder.
•
For the individual.
•
With attention to detail.
It has been shown to be effective in relieving pain for approximately 90 percent
of patients with cancer and over 75 percent of cancer patients who are terminally
ill. Called the WHO Pain Ladder, this approach incorporates the concept of an
analgesic ladder, a rational, stepwise approach to pain management. For details
contact the WHO at www.who.int/en/.
Measures of client comfort and function should be visible to caregivers as well
as members of the family system on a documentation record, such as a bedside
flow sheet specifically designated for rating pain. This information will provide
an assessment of the success of the pain control regimen and also remind the
caregiver that ratings above a specified number require intervention. Whether
or not the agreed-upon goal has been achieved should also be routinely reported
at the change of shift, along with other information about the person’s
status such as vital signs.
Influencing
Factors
Certainly people of all ages are capable of feeling pain. Two particular
age groups with special needs include children and older adults.
Nonverbal children will not be able to articulate the presence of
pain, nor describe its characteristics. The practitioner must be
alert to nonverbal cues such as excessive crying, grimacing, and
restlessness. The other age group with special needs includes the
older adult. Many older adults assume that pain is a natural part
of aging; this is untrue. What is true is that the incidence of disease
and illness increases as we age and pain is a common accompanying
symptom. Practitioners need to inquire about and then explore older
adults’ areas of pain. Treatment of the diseases and illnesses
present is of utmost importance in achieving pain relief.
Emotional state affects pain. Any additional stressors can aggravate the pain
experience. The interconnectedness of thoughts, feelings and beliefs plays a
part in pain perception from an emotional standpoint. Research has shown that
people experience more pain when they focus on it, are told to expect one thing
but experience something different, expect a high level of pain, and are tense
and under stress. It has been theorized that structures in the brain are closely
involved with the emotional aspects of pain perception. It is believed that stimuli
are filtered through the limbic-hypothalamic system and that the frontal cortex
influences rational interpretation and response to pain. Though physical pain
reception is a universal human phenomenon, people experience different pain thresholds
and tolerances. Pain tolerance refers to the lowest level of stimulation at which
a person will stop or seek to stop the stimulus. It is very individualized, different
from person to person and from situation to situation. Many times anxiety is
also present with pain, causing an increased perception of pain intensity. Other
psychological factors affecting pain include fatigue and depression.
In respect to gender, in the American culture men have typically been socialized
to deny or conceal their pain, while women are often encouraged to be demonstrative
with their reaction to pain. Some researchers have theorized that estrogen is
instrumental in regards to modulation of pain sensitivity. Others have demonstrated
that the physical and emotional experiences of pain are similar for both genders,
while it is the expression that often differs. Nonetheless, very few studies
support gender differences in pain threshold.
Another aspect of culture is the patient’s environment. When assessing
for pain consider factors such as: Is the patient generally vocal or quiet and
does he seek and trust the healthcare environment? For the patient who is quiet
or distrustful of health care, you may need to actively elicit more information
and work to establish trust before you can get an accurate pain assessment.
Family and social support are usually helpful to patients when dealing with pain.
Often patients have their own strong support systems already established and
find this helps them to manage the emotional aspect of pain. Sometimes the practitioner
needs to assist patients to utilize or even establish support systems.
Many people assume that those who experience pain like to be alone but this is
not always true, particularly for those that experience chronic or episodic,
recurring pain. Studies have shown that when people do not have adequate social
support, or perceive insufficient support, they have more complaints of pain
and reduced psychological well-being. Formal support groups have been established
for many circumstances and nurses can be instrumental in connecting patients
to these resources.
Non-Pharmacologic
Interventions
Besides medications there are also non-pharmacologic options to control
pain. Most often they are used to complement pharmacologic options.
Advantages of using non-pharmacologic methods include the fact that
many do not require a prescription or any special equipment. However,
always make sure an intervention is appropriate and safe for each
patient situation before implementation.
Non-pharmacologic interventions include relaxation and guided imagery,
which are often used concurrently. Relaxation can be as simple as
focusing on one’s breathing to control tachypnea or mentally
concentrating on a pleasant thought or scene. Patients can also be
taught to progressively contract and then relax various muscle groups,
usually in a sequential pattern, such as from neck to toes. Meditation
is a form of relaxation. Relaxation and guided imagery are thought
to counterbalance the “fight or flight” response the
body often activates in response to pain. As a result of using these
techniques the body often experiences a reduction in skeletal muscle
tension, decreased vital signs, lowered metabolic rate, and reduced
oxygen consumption.
Cutaneous stimulation can be used to eliminate pain as well. Techniques
that use cutaneous stimulation are massage, acupressure, acupuncture,
hot and cold applications, and transcutaneous electrical nerve stimulation
(TENS).
Lastly, never underestimate the value of education. A well-informed
patient is usually best able to cope with his pain. The nurse should
not be the only person in the nurse-patient relationship with the
proper information on pain and its treatment. Certainly, in today’s
information explosion society, patients may present with a plethora
of information; however, a patient with a lot of information is not
synonymous with an educated patient. Beyond instructing patients
about pain and treatment options, nurses may need to clarify and
correct misinformation.
The
Role of Advanced Directives
In recent years, it has been increasingly recognized that an individual
has the right to self-determination not only with regard to activities
during life, but also in choosing services that will enhance the
quality of life during her final days. The person may have chosen
an executor, made decisions regarding disposition of personal property,
and provided loved ones with information about specific concerns
and intentions. An important part of this process is the preparation
of advanced directives that may include a living will and a durable
power of attorney for health care decision-making in the event of
incapacitation. If the person decides that he does not want to be
maintained by gastric feeding or mechanical ventilation, then those
decisions can be conveyed to the physicians and others involved in
his care.
Many individuals at the end of life have reported considerable comfort in knowing
that they have expressed their wishes and are to be allowed a death with dignity
according to those wishes. Healthcare professionals can assist their patients
to achieve this level of peace by encouraging the preparation of advance directives.
Nurses are committed to providing care to the whole person throughout the life
span, and to maintaining a holistic perspective on the needs of the person in
their care. What could be more important than gathering all the nurse’s
personal strengths and professional skills to provide caring support to those
facing one of life’s greatest transitions?
Web Sites, Organizations and Projects Focusing on End-of-Life Issues
AgeNet - bridges the distance between aging parents and adult children
by providing actionable information about products and services.
American Academy
of Hospice and Palliative Medicine – an organization
for physicians dedicated to the advancement of hospice/palliative medicine,
its practice, research and education.
Before I Die – A
Web site covering a program that explores the medical, ethical, and
social
issues surrounding end-of-life care in America
today.
Compassionate Friends – assists
families in the positive resolution of grief following the death of
a child.
Growth House –improves
the quality of care for people who are dying through public education
and global professional collaboration.
Last Acts – a
call-to-action campaign to improve care at the end of life, bring death-related
issues
out in the open and help individuals
and organizations pursue better ways to care for the dying.
Legacy.com – a
way to celebrate life stories in words and pictures for now and for
the future.
Medicare Rights Center – non-profit
organization offers answers to questions about Medicare, describes
education and services, and provides
news and publications.
National Family Caregivers
Association – a grassroots organization
created to educate, support, empower and speak up for those who care
for chronically ill, aged or disabled loved ones.
National Hospice and Palliative Care Organization - nonprofit organization
representing hospice and palliative care programs and professionals in
the U.S.
National Public Radio – a
site that recapitulates the NPR program, The End of Life, Exploring
Death in America, in words and audio.
Open Society Institute – The
Project on Death in America wants to understand and transform the culture
and experience of dying and bereavement
through initiatives in research, scholarship, the humanities, and the
arts.
The Palliative Page – a
one-stop resource for all things online related to palliative care.
Sociology of Death
and Dying – an
exploration of death in the cultural order, the broad realm of social
reality; the institutional
orders, like religion, that filter and mold our experiences; and, finally,
the individual order.
Supportive Care of the Dying - A Coalition for Compassionate Care--Selected
Members of the Catholic Heath Association (Sylvia McSkimming, Ph.D.,
Project Coordinator; Portland, OR)
Toolkit of Instruments to Measure End-of-Life Care - a comprehensive
annotated bibliography of instruments to measure the quality of care
at the end of life.
The Transcultural Nursing Society - www.tcns.org
References and Suggested Readings
Agrawal,
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Esper, P; Lockhart,
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Fine, PG; “Maximizing benefits and minimizing risks in palliative
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Symptom Manage, 2003 Apr;25(4): pS53-62
Hooke, C; Hellsten,
MB; Stutzer, C; Forte, K; “Pain management
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Kyba, FC; “Legal and ethical issues in end-of-life care.” Crit
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Matzo, ML; Sherman,
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McClain, K; Perkins,
P; “Terminally ill patients in the emergency
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Nurs, 2002 Dec;28(6): p515-22.
McMillan, SC; Weitzner,
MA; “Methodologic issues in collecting
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Nurs Forum, 2003 Jan-Feb;30(1): p123-9.
O’Gorman, ML; “Spiritual care at the end of life.” Crit
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Pimple, C; Schmidt,
L; Tidwell, S; “Achieving excellence in end-of-life
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Raudonis, BM; Kyba,
FC; Kinsey, TA; “Long-term care nurses’ knowledge
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Reb, AM; “Palliative and end-of-life care: policy analysis.” Oncol
Nurs Forum, 2003 Jan-Feb;30(1): p35-50.
Resnick, B; Andrews,
C; “End-of-life treatment preferences among
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Rushton, CH; Sabatier,
K; Gaines, J; “Uniting to improve end-of-life
care.” Nurs Manage, 2003 Jan;34(1): p30-3.
Sherman, DW; Matzo, ML; Rogers, S; McLaughlin, M; Virani, R ;
“
Achieving quality care at the end of life: a focus of the End-of-Life
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Wells, MJ; Wilkie,
DJ; Brown, MA; Corless, IB; Farber, SJ; Judge, MK; Shannon, SE ; “Technology survey of nursing programs: implications
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National Center
of Continuing Education
