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PALLIATIVE MEDICINE AND HOSPICE CARE
Open Journal
http://dx.doi.org/10.17140/PMHCOJ-2-114
Palliat Med Hosp Care Open J
ISSN 2377-8393
Transforming End-of-Life Care
Bok Yae Chung, RN, HNP, PhD1; Eun Hee Oh, RN, PhD2*
1Nursing College, Kyungpook National University, Daegu 41944, Korea
2Department of Nursing, Kyungpook National University Hospital, 130 Dongdeok-ro,
Jung-gu, Daegu 41944, Korea
*Corresponding author
Eun Hee Oh, RN, PhD
Department of Nursing
Kyungpook National University
Hospital, 130 Dongdeok-ro
Jung-gu, Daegu 41944, Korea
Tel. +82-53-200-5170
Fax: +82-53-200-5171
E-mail: misum1999@naver.com
Article History
Received: July 27th, 2016
Accepted: September 13th, 2016
Published: September 14th, 2016
Citation
Chung BY, Oh EH. Transforming
end-of-life care. Palliat Med Hosp
Care Open J. 2016; 2(2): 21-25.
doi: 10.17140/PMHCOJ-2-114
Copyright
©2016 Oh EH. This is an open ac-
cess article distributed under the
Creative Commons Attribution 4.0
International License (CC BY 4.0),
which permits unrestricted use,
distribution, and reproduction in
any medium, provided the original
work is properly cited.
Volume 2 : Issue 2
Article Ref. #: 1000PMHCOJ2114
Opinion
Page 21
Currently, hospice care which focuses on caring for a terminally ill person delivers
holistic, supportive, interdisciplinary, and patient-centered management. There have been nu-
merous efforts to establish hospice care for people who are in the end-stage of their illness.
Palliative care is an approach that improves the quality of life of patients and their
families facing the problem associated with life-threatening illness, through the prevention and
relief of suffering by means of early identification and impeccable assessment and treatment
of pain and other problems, physical, psychosocial and spiritual (WHO). Hospice care which
is a subset of palliative care focuses on controlling pain and other symptoms of illness so pa-
tients can remain as comfortable as possible near the end of life. The meaning of hospice care
throughout this study is a supportive care to people in the final phase of a terminal illness and
focus on comfort and quality of life.
Hospice care for people with end-stage illnesses, which can involve complex end-
of-life care in a wide variety of settings, including bio-psycho-social symptom management,
care related to cultural and ethical issues, bereavement care, and after-death care. Hospice care
affects the end of life experience tremendously. 1 However, let us consider hospice care at this
time. Does hospice care really deliver the right care for people in the endstage of their lives?
What level of hospice care do most hospice patients receive? How many people can be sup-
ported with hospice care by the government for a dignified death? For how long is hospice care
required for an appropriate or good death? How much respect is there for the human rights of
people in hospice care?
Human dignity and human rights in end-of-life care are very important in terms of a
person’s identity and values, and they are accorded to and respected in everyone using hospice
care services.2-5 It is the responsibility of every hospice professional to know how to provide
high quality care to people with end-stage illnesses in view of their human dignity.5-7
This paper provides an overview of transforming end-of-life care. It describes not only
the highest quality care for people who have had a life-limiting illness but also the trends of
preparation for death, respect for the free will of people, receiving professional hospice care,
and quality care after death.
The goal of this paper is to contribute to the development of future hospice care from
the perspective of the dignity of people. Much needs to be improved in areas such as hospice
philosophy and practical support for transforming end-of-life care.
HIGHEST QUALITY CARE
The highest quality care in Hospice refers to the quality, compassionate care of people fac-
ing life-limiting illnesses. Compassionate care is also holistic care. People facing life-limiting
illnesses need compassionate access to a more systematic way to meet their holistic needs.
Compassionate care becomes a strong and powerful interaction that encourages the patient to
participate.
PALLIATIVE MEDICINE AND HOSPICE CARE
Open Journal
http://dx.doi.org/10.17140/PMHCOJ-2-114
Palliat Med Hosp Care Open J
ISSN 2377-8393
Page 22
The approach of compassionate care takes into account
the physical, emotional, and spiritual needs of each person. The
method of delivering compassionate patient care is a ready-to-go
solution to a very real problem, which involves supporting the
patients and helping to meet their needs.8-11
The hospice care profession also provides spiritual and
emotional support to hospice patients. Hospice providers en-
courage individuals to discover meaning and purpose as peace -
makers. They provide support during difficult decisions while
respecting individual beliefs. Spiritual care may or may not in-
clude religious care.
PREPARING FOR DEATH
Preparing for death is one of the most empowering actions. As
people approach the end of their lives, they commonly face
many decisions that range from simple to extremely complex.
Dying persons and their families are faced with choices about
what they want or need. These people can be prepared for death
when they know their exact situation in detail.
These decisions may be physical, psychosocial, spiritu-
al, or legal in nature. Each decision should ideally be considered
in terms of relief of suffering and the values and beliefs of the
dying individual and his or her family.12-14
At the moment, when people die, they leave their physi-
cal bodies behind. They pass through a dark tunnel to a transcen-
dent spiritual existence. After they die, their family and friends
remain. The emotional-spiritual-mental function involves a dif-
ferent kind of process.14 The spirit of the person in the final pro-
cess may need resolution of unfinished issues and relationships
with life. The spirit completes its natural process of reconciling
and finishing in a way that is appropriate and unique to the val-
ues, beliefs, and lifestyle of the dying person. Some may want
to reflect on the meaning of life, some may decide to conduct a
final life review or deal with psychologically unfinished busi-
ness, and some may want to participate in planning rituals before
or after death. The most appropriate responses to the emotional-
spiritual-mental changes are support and encouragement about
the resolution and the transition.
Waldrop and Meeker 15 identified five decisions that
people make before the end of their lives: (1) operationalizing
advance care planning, which is a renewed focus on decisions
about care at the end of life; (2) surrogate decision making, in
which caregivers begin making both informal and formal deci -
sions for the dying person; (3) meaning-making, in which the
foreshortened time brings into focus decisions about seeing spe-
cial people, attending events, and creating memories; (4) loca -
tion of death, which involves decisions about whether the person
wants to, and can remain, at home to die; and (5) final acts, in
which decisions about funeral arrangements, wills, and leaving
a legacy become central.
Gauthier 14 mentioned that terminally ill adults make
decisions based on a broad set of factors that influence how one
responds to everyday challenges. In his study of decision mak-
ing near the end of life, he also reported that open and honest
communication about sudden functional changes in the context
of chronic illness might allow individuals to choose hospice or
palliative care earlier in the trajectory of their illnesses. There -
fore, a hospice care team prepares the dying person to respond
in ways that will help him or herto accomplish this transition.
These teams also support and understand the responses of peo-
ple in the final stage.
Preparing for death is a great gift of love as this mo-
ment approaches. The person is ready for this release emotion -
ally, spiritually, and mentally because others will continue to live
until the shutdown process ceases. All end-of-life choices and
decisions have a significant impact on suffering, quality of life,
and dying. People in this context may make choices about how
to spend their limited time and energy. The time of preparing
for death is a time to give full acceptance, support, and com-
fort. People also frequently make legal decisions about wills,
advanced directives, and durable powers of attorney at this time.
The person approaching the dying process keeps in his
or her mind the unresolved or un-reconciled important issues or
some significant relationships even as all of their physical sys-
tems cease to function. Preparing for death needs to happen in
a way that is appropriate and unique to the values, beliefs, and
lifestyle of the dying person. It is closely interrelated with his
or her physical, psychosocial, spiritual, and economic situation.
Therefore, well-intentioned care by health care providers may
overlook a particular person’s wish not to discuss death.
RESPECT FOR FREE WILL
Free will is a freedom of choice and self-determination without
external restraint when there is a choice of possible actions. Re-
spect for the free will of people who are in the last days, weeks,
and months of life requires hospice health professionals to un-
derstand the extent to which their preferences are being met. Re-
spect for the free will of people who are in their last daysmeans
improving the understanding of their needs and wishes by cap-
turing their preferences and sharing the information when caring
for the dying people. For example, a hospice health care team
should consider how and where people hope to die and what they
are concerned about. Each team should consider which type of
care makes the most sense for each person. Hospice care in gen-
eral can take place in different settings, including hospitals, out-
patient palliative care clinics, nursing homes, certain other spe-
cialized clinics, and the home. The Patient Self-Determination
Act (PSDA) of 1990 was developed to ensure that these rights
were protected, including the fundamental rights to treatment
choices, informed consent, truth-telling and open communica -
tion with health care providers, and control over the individual’s
own life and death. The core values of hospice care emphasize
autonomy and individual rights to make life choices, especially
PALLIATIVE MEDICINE AND HOSPICE CARE
Open Journal
http://dx.doi.org/10.17140/PMHCOJ-2-114
Palliat Med Hosp Care Open J
ISSN 2377-8393
Page 23
health care choices. The health care provider in a hospice must
have a clear understanding and recognition of the patient’s de-
sire. It is important to remember that people are aware of their
own values, hopes, and beliefs.
PROFESSIONAL CARE
The professional care of people who are dying is mandatory
for all hospice health professionals involved in end-of-life care,
which includes skills for communicating with and supporting
families and their advocates. 16,17 The hospice care providers in-
clude hospice nurses, doctors, social workers, physical, speech,
occupational, or dietary therapists, home health aides, spiritual
counselors, and volunteers as well as someone who is available
as the primary caregiver at home. This person may be a spouse,
partner, or other relative, such as a son or daughter, or even a
neighbor or a team of people from the community.
Hospice care is most affected by the differences of the
social and cultural recognition and the policy of the countries.
So, professional hospice care should be made by considering the
cultural aspects.
Professional hospice care is intended to help people
who should be respected during every moment of their final days.
Hospice professionals should help them using their professional
knowledge and experience because they support the final-stage
patients who have special psycho-socio-spiritual problems. 18,19
Hospice care providers serve not only to reduce physical suffer-
ing but also to help patients and their families spend meaningful
time together. Hospice care professionals have helped patients
and families to hold a family meeting to reassure the patient that
everyone is ready to let go. Therefore, the members of hospice
care teams want to know what to expect and how to respond in
ways that will help the people who are in transition with support,
understanding, and ease. Also, Chochinov 3 proposed a model
dignity and dignity-converting intervention for patients serv-
ing nearing death by therapeutic conversation. Through dignity
therapy, patients will be able to reduce psychological, spiritual
and existential distress and to send the end of life with dignity.
QUALITY CARE AFTER DEATH
Human dignity is that all humans should be treated with respect
regardless of sex, race, gender, class, nationality, religion, or oth-
er divisions. The dignity of the deceased is not overemphasized
because he or she had an individual experience. 15,21 A dignified
death means not only the alleviation of bodily suffering and pain
but also the meaningfulness of death. The quality of care after
death largely depends on whether staff members have received
training in the care of dying patients. 22 Quality care after death
reflects the importance of caring for the deceased body and the
family because they have had their own individual experiences.
Quality care after death reflects the importance of car -
ing for the deceased body and the family because they have had
their own individual experiences. The dignity of the deceased
is not overemphasized because he or she had an individual ex-
perience.15,20 A dignified death means not only the alleviation of
bodily suffering and pain but also the meaningfulness of death.
The quality of care after death largely depends on whether staff
members have received training in taking care of dying pa-
tients.21
End-of-life care calls on the skills of many different
professionals and individuals to meet the patient’s many re-
quirements. Crucially, there is only one opportunity to ensure
good care after death, and it is not easy to coordinate everything
that needs to happen. Guidance, therefore, is a good practice,
as is confirming a process by which everyone who is involved
can ensure that the experience for those coping with the loss of
someone important to them is as good as it can be. This whole
process should be set within the context of the deceased’s wishes
about care arrangements, and family members should be given
information and support. Stuart et al22 identified after-death care
as care/counseling of the family, religious/cultural requirements,
staff availability, and the presence of funeral directors and pas-
toral caregivers.
CONCLUSIONS AND RECOMMENDATIONS
The goals of this paper were to explain the transformation of end-
of-life care with a foundation of dignity for palliative patients
and to develop a conceptual framework for the future perspec-
tives of people approaching death. The quality end-of-life care
in future should involve the highest quality care, preparation for
death, respect for free will, professional hospice care, and qual-
ity care after death with a view to human dignity (Figure 1).
It is complex and challenging, but the principal aim is
to support people to die well in their preferred death. Good end-
of-life care aims to treat people with dignity and respect in care.
Some people who are able to access hospice and special pallia -
Figure 1: Transforming end-of-llife care.
PALLIATIVE MEDICINE AND HOSPICE CARE
Open Journal
http://dx.doi.org/10.17140/PMHCOJ-2-114
Palliat Med Hosp Care Open J
ISSN 2377-8393
Page 24
tive care in communities or hospitals receive high standards of
care in their final weeks, days, and hours, but many others do
not. Despite the higher quality of end-of-life care and increas -
ingly high-level qualitative data to support this, there is still a
significant fragmentation of services and widely variable quality
of care. A goal should be set for hospice and end-of-life care
involving quality of care to increase annually.
CONFLICTS OF INTEREST
The authors declare that they have no conflicts of interest.
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ISSN 2377-8393
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