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It is reported that:
 Nearly 50% of all patients going through the dying
process spend most of their time in moderate to
severe pain.

 Most Americans would prefer to die in their own

home, yet most die in institutions.

 Nearly 50% of dying patients in the United States

experience multiple physical and emotional
symptoms that go untreated or are under-treated.

 These patients also experience decreased quality of

life, often due to symptoms such as pain, dyspnea,
depression, anxiety, delirium, fatigue/weakness,
restlessness/agitation, and gastrointestinal
disturbances.

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Ethics & End of Life Care

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 JCAHO & End of Life Care
JCAHO Standards

Standard PC.8.70 Comfort and dignity are optimized during end of life
care. EP 1 To the extent possible, as appropriate to the patient’s and
family needs and the hospital’s services, interventions address patient and
family comfort, dignity, and psychosocial, emotional, and spiritual needs,
as appropriate, about death and grief.

PATIENT AND FAMILY RIGHTS (PFR)

PFR.2.2 The organization informs patients and families about their rights and
responsibilities related to refusing or discontinuing treatment.
PFR.2.3 The organization respects patient wishes and preferences to withhold
resuscitative services and forgo or withdraw life-sustaining treatments.
Joint Commission International Accreditation Standards for Hospitals 3rd Edition
Standards Only © 2007 Joint Commission International
PFR.2.4 The organization supports the patient’s right to appropriate assessment and
management of pain.
PFR.2.5 The organization supports the patient’s right to respectful and compassionate
care at the end of life.

CARE OF PATIENTS (COP)

COP.6 Patients are supported in managing pain effectively.

COP.7 The organization addresses end-of-life care.
COP.7.1 As appropriate to the care and services provided, assessments and
reassessments of the dying patient and their family are designed to meet
individualized needs.
COP.7.2 Care of the dying patient optimizes his or her comfort and dignity.

© 2007 Joint Commission International All Rights Reserved 4

Barriers to Quality End Of Life Care
Lack of knowledge Delayed access to
Aging of the
on part of health hospice &
population
care professionals palliative care

Realities of life Rules &

limiting diseases regulations

• Lack of knowledge of health care professionals can significantly impact

how well patients & their families will have their physical, psychological,
social & spiritual needs managed through the dying process.
• Aging population refers to the approximately 70 million individuals
reaching age of 65 by the year 2030 (Administration on Aging 2000).
Increased life expectancy means increase in number of elderly having to
cope with concurrent chronic illness and their associated physical, social
and spiritual difficulties.
• Delayed access refers to the need for more timely referrals by healthcare
professionals to hospice & palliative care in order for patients and their
families to reap the full benefit of these services.
• Realities of life limiting diseases refers to the failure to acknowledge that
the limits of medicine may lead to futile care. Use of aggressive curative
treatments can prolong the dying process and contribute to physical and
emotional distress of the patient.
• Rules and regulations refers to issues regarding access to care, insurance
coverage and the potential need to hire a caregiver from outside the
family which can contribute to financial barriers to care.
 Quality of life differs from person to person. The patient is the only one who
can define quality of life which is based on his or her own life experiences,
values, and beliefs. It is important to consider each of the dimensions
Physical described here from the patient and family perspective. Quality of life must
well-being
be considered throughout the illness and end of life period to include the time
of death and bereavement periods. It is imperative that healthcare respond to
the psychological and spiritual needs of patients and families coping with life-
threatening illnesses to avoid increasing their suffering and isolation.
Concept of Psychosocial
Suffering well-being Physical well-being: The physical well-being of the patient is affected by
Quality various symptoms due to organic and metabolic changes, disease progression
and debilitation. Physical aspects include functional ability, sleep, rest, and
of Life appetite. Pain is one of the primary concerns of terminally ill patients and
Issues their family members or caregivers. Family members can develop or may have
existing physical needs that impact their ability to care for the patient, as well
as their ability to care for themselves. Physical symptoms can manifest during
the bereavement period as well.

Spiritual Social
Well-being Well-being Psychosocial well-being: Patients experience a wide range of emotions,
psychological issues/concerns, and losses (such as body image and
role/relationship changes) throughout their terminal illness journey and at the
end of life. Communication and support are important components in the
management of the psychological domain.

Social well–being: The social structure and integrity of the family may be threatened. Becoming a burden to one’s family is often a concern to a
patient. Expressions of sexuality may change between partners as illness progresses. Children may show their emotional concerns by isolating
themselves or by acting out in school or at home. Financial concerns may arise due to loss of income. Friends and extended family stop visiting,
creating social isolation for patient and family.

Spiritual well-being: Religion gives expression to a person’s regarding suffering, illness, pain and death. Skillful attention to
maintaining a person’s unique meaning of hope can enhance quality of life and help make the dying process more meaningful to the patient and
family.

Concept of Suffering : Suffering is a highly personal experience and depends on the significance or personal meaning of events and losses. It is a
state of severe distress that threatens the intactness of the individual. Suffering may be associated with an event(s) such as fear of physical
distress, issues regarding family relationships and other roles, perceptions of self, witnessing another’s distress, an inappropriate focus on cure.
Palliative Care & Hospice
during End of Life
An overview of the philosophy of hospice and palliative
care is that dying is a unique experience and part of the
normal life cycle. Support and care is provided using an
interdisciplinary team approach with the focus on
enhancing the quality of life for persons facing a life-
threatening illness across settings.
Palliative care can and should co-exist with curative care.
Introduction of palliative care earlier in the course of an
illness makes it possible to recognize when subtle shifts
occur and allows patients, families and professionals to
adapt goals accordingly.
Goals of care change often throughout the course of
illness by integrating physical, psychological, social and
spiritual aspects of care. Frequent reassessment and
clarification of goals, is needed by the interdisciplinary
team, the patient and family.
In many healthcare settings, during clinical rotations,
students have opportunities to work with patients and
families experiencing the dying process.

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 Palliative Care

Definition of Palliative Care:

“an approach that improves the quality of life of patients
and their families, facing the problems associated with
life-threatening illness, through them prevention and
relief from suffering, by means of early identification,
impeccable assessment, treatment of pain and other
problems - physical, psychosocial, and spiritual” (World
Health Organization, 2002; Sepulveda et al., 2002).

Eligibility for initiation of Palliative Care:

Palliative care is appropriate and can be implemented at
any time during the illness experience.
 Principles of Palliative Care
* The patient and family (as defined by the patient) are a unit of care.

* No single discipline can fully address the many concerns that patients and
families have during end of life, therefore utilizing the expertise and
combined efforts of the interdisciplinary team members is the key to
providing holistic, comprehensive care.

* The patient and family are at the center of the team.

* Education and support of the patient and family about the dying process
provides essential information and decreases fear. Information needs may
include:
· Management of physical care
· Medications
· Spiritual and emotional needs
· Guidance with practical issues such as insurance coverage
· Scheduling of treatments and what to anticipate
· Coping strategies
· Bereavement support

* Professional caregivers should support and be an advocate for the needs of

the patient and his family so that death is a more meaningful experience for
them
 Hospice
Definition:
Hospice care is the support and care for persons in the final phases
of an incurable disease so that they may live as fully and
comfortably as possible (NHPCO, 2000). Hospice also supports the
surviving family through the dying and bereavement process (Egan
& Labyak, 2001). Hospice provides comprehensive palliative,
medical and supportive services across a variety of settings and is
based on the understanding that dying is a part of the normal life
cycle. Care can be provided in the home, in residential facilities,
long-term care facilities and other settings (i.e. prisons).

Eligibility for Hospice:

Enrollment is limited to those expected to die within six months.
The Medicare Hospice benefit has currently expanded its hospice
service options so that patients/families can receive end of life care
long before the last six months of life to better meet the needs of
patients dying from chronic illnesses.
An additional option that has been made available to patients (and
their families) who are actively in the dying process or have been
determined as terminal is that they can be designated as an inpatient
hospice.
 Principles of Hospice Care

* The Family is the unit of care

* Care involves an interdisciplinary approach to expert medical and nursing

care, pain management, and emotional and spiritual support

* Patient has the right to die pain-free and with dignity

* Loved ones will receive necessary support

* Focus is on caring, not curing

* Care is provided primarily in the home, but can also be provided in free-
standing hospice facilities, hospitals, and nursing homes

(ACS, 2004, p. 532)

 Advance Directive
(also called a Living Will)

• An Advance Directive is a document that lets patients state their

wishes about medical care in the event that they develop a terminal or
irreversible conditions and can no longer make their own medical
decisions (TxPEC, 2009).

• An Advance Directive (Living Will) becomes effective when

1. the patient’s physician certifies in writing that the patient has
a terminal or irreversible condition, and
2. after the patient’s physician writes a “do not resuscitate
(DNR) order specifying the patients wishes to withhold
medical care.
3. The patient may revoke the Directive at any time.
• Hospitals are required by Medicare Conditions of Participation and
JCAHO to inquire about Advanced Directive status upon the patient’s
admission and to instruct the patient about his/her option of having an
Advance Directive if so desired. If the patient has a Directive, the
hospital is required to make it part of the patient’s medical record.
However, hospitals are not required to make the patient create an
Advance Directive or Power of Attorney for medical care.

(TxPEC, 2009)
 Other Laws and Directives
related to End of Life:
• Federal Patient Self Determination Act is a law that allows for
patients to make choices about what is done to their bodies while
they are receiving medical care through the development of the
Advanced Directive (Living Will).
• Texas Natural Death Act (1991) is a state law that allows the
withdrawal or withholding of medical care to be requested by a
competent adult who is terminally ill.
• Texas Medical Power of Attorney Lets the patient name someone
to make decisions about his/her medical care-including decisions about
life support-if he/she can no longer speak for him/herself.
The patient’s attending physician must certify in writing that the
patient is unable to make health care decisions, and file the
certification in the patient’s medical record.
• This person does not necessarily have to be a family member.
• This person may be a Court Appointed Guardian to make
decisions for an individual who is deemed incapable of making
an informed decision.
 Nursing &
Advance Directives
Nurses have a unique opportunity to enact the federal Patient Self-
Determination Act through communication with patients and by
assisting them explore their values and beliefs regarding the end of
life. The nurse can promote patient comfort with decisions
concerning advance directives. They can also be sure that the entire
healthcare teams is aware of the patient’s wishes (Nevidjon & Sowers,
2000).

Note: Any problems/questions associated with Advance Directives or

Durable Power of Attorney should be referred to the nurse in charge.
Each organization has its own policies about who can/can’t witness a
signature.

For more information also visit:

http://www.txpec.org/whatsnew/texas.asp
 References
Administration on Aging. (2000). Older population by age: 1900-
2050. Retrieved from http:www.aoa.dhhs.gov./aoa/stats/AgePop
2050Chart-numbers.html.
American Cancer Society (2004). A cancer source book for nurses, 8 th
ed. Sudbury, MA: Jones & Bartlett Publishers International.
Egan, K.A., & Labyak, M.J. (2001). Hospice Care: A model for quality
end-of-life care. In B. R. Ferrell, & N. Coyle (eds.), Textbook of
palliative nursing (pp. 7-26). New York, NY: Oxford University
Press.
National Hospice AND Palliative Care Organization (NHPCO).
(2000). Hospice fact sheet. Alexandria, V.A.: Author.
Retrieved from www. nhpco.org.
Nevidjon, B.M. & Sowers, K.W. (2000). A nurse’s guide to cancer
care. Philadelphia: Lippincott Williams & Wilkins.
Sepulveda, C., Marlin, A., Yoshida, T., & Ulrich, A. (2002). Palliative
Care: The World Health Organization’s global perspective.
Journal of Pain & Symptom Management, 24(2). 91-96.
Texas Partnership for End of Life Care (TxTEC) (2009). Retrieved
from: http://www.txpec.org/whatsnew/texas.asp