End-of-life Decision Making in the Older Adult

This paper examines the importance of planning for end-of-life and its
impact on the cost of end-of-life care. The need to pursue this theme
was pushed by the fact that the majority of the older adults in the
United States die without a choice where 50 % of them are hospitalized
and 20 % of them sustained by sterile machines in ICU. Although advanced
directive has been in place for some time, the information about it has
not reached the society since discussions on death has perceived as
failure. The desire to complete advance directive is affected by several
factors including racial disparity, prior education, existence of close
family members, and perception of poor self health. The researcher
purposes to improve the quality of end-of-life planning by ensuring that
such decisions capture the clients’ needs and are client centered. The
purpose will be pursued by conducting a conducting a contextual action
research guided by the comfort theory.
Key words: advance directive, end-of-life, palliative care, older
adults, open discussion.
End-of-life Decision Making in the Older Adult
Planning for the end-of-life is one of the most difficult tasks in human
life probably because it involves thinking about when and how to die.
Despite the challenging surrounding the humanistic issue of the end-life
decision making, it involves significant resolution (such as advanced
plan for palliative or end-of-life care) that can help the older adults
to die in a dignified manner. In most cases, death find people in state
that they cannot talk, see, or even make the simplest decisions in life.
This is a common phenomenon among the increasing population of older
adults who make up about 12.3 % of the total population of the United
States with a projected increase of up to 19 % by the year 2030 (Zhang,
2013). The majority of death incidents (80-85 %) involve the population
of older adults who are affected by chronic medical conditions (such as
obstructive pulmonary, heart diseases, Alzheimer’s disease, cancer,
renal failure, and diabetes).
The fact that the majority of these people die without a choice, where
50 % of them die while in hospital and 20 % of them under the life
support machines in the intensive care unit (ICU) (Mandrola, 2013) calls
for a constructive discussion that will help in reducing the occurrence
of bad deaths and alignment of end-of life care with the needs of the
older adults. The purpose of this paper is to provide a discussion on
how end-of-life decision making can be improved, be aligned with goals
of patients, encourage involvement of family members in the discussions,
and address emotional issues that arise when providing the patient
centered end-of-life plan.
Background and significance
The majority of the people of the United States relies on palliative
care or advanced directives to safeguard against the risk of bad dead or
being forsaken when they become too old or too ill to communicate.
Advanced directives are used to document choice of treatment that people
would to receive or give authority to some people to make treatment
decisions on behalf of persons who have completed the advanced directive
when they get too old or too ill o communicate Sharma, Garry, Jacobson &
Ditto, 2008). Although most Americans believe that advanced directives
are important components of their end-of-life planning researchers have
warned to desist from uncritical reliance on advanced directives
(President’s Council on Bioethics, 2005). This is because many people
fail to understand some complex and serious medical situations that are
critical for elderly persons. Consequently, 25 % of the elderly people
keep on changing their medical preferences where 80 % of them do not
even realize that their treatment preferences have changed over time
(Sharma et al., 2008). This raises some doubt on the quality of
end-of-life decisions that are currently being made with the guidance of
advanced directives. The frequent changes in medical or treatment
preferences among the older adults mean that the end-of-life decisions
made in advance fail to reflect the present preferences. This calls for
a change in the end-of-life decision making process in order to address
the needs of the elderly people as well as theory emotional changes.
Although the end-of-life is not an exemption, many families and
healthcare providers are still struggling with futile measures to
prolong the life of the older adults with at least some minutes using
sterile machines and drugs. Americans express varying views about their
desired approach in managing the end-of life. A research conducted by
Baldridge (2012) indicated that most 70 % of Americans prefer pain
management services, 54 % would like to go for hospice contracts, 58 %
of them prefer advanced care planning, while 52 % would require
bereavement support. This mixture of ideas about dying indicates the
mess that results from failure of the stakeholders to engage the public
in proper ways of managing the process of death using evidence-based
practices. Consequently, the cost of end-of-life has escalated to 27 %
of the total Medicaid budget, which is about 10-12 % of the health care
budget (Kerfoot, 2012). This means that there is a need for drastic
interventions to improve the quality of methods being used to manage
end-of-life in the United States. Bringing the end-of-life debate
(between care givers and their clients) out of dark can results in the
preference of cheaper options such as referral to palliative and hospice
instead of undergoing costly and futile treatment. However, this can
only be achieved in presence of effective advanced directive services.
Literature review
There is a strong interest among the members of public and health care
professionals in improving the quality of end-of-life decision making,
but this is hindered by a perception that death is failure.
Consequently, patients fail to make a meaningful prognosis for
end-of-life survival, which leads to a conflict between caregivers’
goals of preserving life, respecting patient autonomy, and the need to
benefit patient (Rosenfeld, Wenger & Kagawa-Singer, 2000). This result
from lack of sufficient information about alternative interventions,
treatment choices, and the best prognosis that help patients in making
informed decisions on how they would like to end their life on earth at
their old age. Near the end-of-life, the older adults, especially those
suffering from chronic disease endure severe symptoms (such as fatigue,
delirium, intense pain, and agitation), where the majority express their
desire to abandon life sustaining treatment, but their diminishing
health status reduce their capacity to make choices at such moments
(Hawkins & Ditto, 2005). This is because the mental as well as physical
effects that the older adults undergo towards the end-of-life subject
them to dilemma and hence they are unable to make the right judgments
about their serious illness. The poor health status coupled with the
lack of advanced planning for end-of-life results in death without
Racial impact on end-of-life planning
The United States is a multicultural and multiethnic nation where ethnic
and cultural perceptions are likely to influences health related
decisions. Research shows that the African Americans prefer aggressive
life saving treatment options at the end-of-life compared to Asians and
Caucasians (Zhang, 2013). This suggests that race is significantly
related to end-of-life decision making. In addition, the White Americans
are more likely to complete advanced directive (45 %) compared to their
counterpart non-whites (32 %) who believe that advanced directives are
important tools for end-of-life decision (Zaide et al., 2013). The
researcher also identified that more White Americans completed the
advanced directive than non-white slightly before (25. 67 % and 12.68 %
respectively) palliative care consultation and soon after (59.36 % and
40.84 % respectively) palliative care counseling. This suggests that the
non-white Americans are hindered by other factors other than lack of
information from making advanced end-of-life planning. Although
palliative care education and open discussion can help in reducing
racial disparity, research shows that nonwhite, especially the Latino
have lesser tendency to discuss end-of-life treatment preferences or
prepare living will compared to their white counterparts.
Impact of prior education on advanced directive
Lack of community education and information are the major barriers
towards completion of advanced directives. Despite the high emphasis
placed on the significance of completing advanced directives, research
shows that the majority of the people of the United States have little
or no information pertaining to the content and importance of completing
the advanced directive forms. According to Later & King (2007) only 5 %
of Americans have full knowledge about advanced directive, 30 % are
partially informed, and 43 % have little information, while 22 % have no
information about advanced directive. In addition, the research showed
that the majority of Americans failed to complete advanced directives
for various reasons where 27 % did not know where to get them, 28 % did
not know how to fill them, 40 % did not know what to say, while 5 %
though the advanced directives were meant for the old aged members of
the society. This indicates the importance of prior passing the
knowledge and information pertaining to advanced directives to the
society in order to improve the quality of end-of-life planning
The existence of close family members
The existences of family members who live nearby have negative impact on
the decision to complete advanced directive. According to Zhang (2013)
people without family members who live nearby are more likely to
complete advanced directive than those with family members living close
to them. In addition, people with living children have a higher tendency
to prefer less aggressive treatment compared to people without living
children. Other research works have identified that some people are
pushed to make the end-of-life decision in consideration of the impact
of their end-of-life care on family members. According to Douglas &
Brown, (2002) 31 % of people completing the advanced directive do it
make decisions making regarding their end-of-life treatment easy for
their family members. This group of people perceives the importance of
letting their family members know their wishes regarding their treatment
option, thus reducing disagreements at the time of their incapacitation.
Perception of poor health
The perception of declining self health or recent cases of
hospitalization influences the end-of-life decision making process. The
perception of poor health precipitates people to complete the advanced
directives, which give them an opportunity to make choices of how they
would wish to end their lives. According to Zhang (2013) reported that
an admission of about 12 months in a nursing home increased the rate of
advanced directive completion by 18 % compared to the baseline rate. In
addition, the information given to patients during the medical care
crisis or at the time of admission increased the rate of advance
directory completion. Douglas & Brown (2002) also identified that 15 %
of people who complete advanced directives are pushed to do so by
failing health conditions. This means that many people are pushed by
chronic illness, hospital admission, and declining health status to plan
for their end-of-life treatment options. However, decisions made during
health crisis may not guarantee the patient’s autonomy that is desired
for an advanced directive plan that is completed when clients are in
good health.
Problem statement
The literature reviewed in the present study reveals that lack of
end-of-life planning leads to death without choices. This is because the
society has always viewed death as a failure, but lack of planning for
the end-of-life is the actual failure. Failure to plan results in
financial, ethical, and moral crisis among family members, patients, and
health care providers. In addition, lack of advanced directive planning
leads to medical treatment without choices, futile care, increased
suffering, and prolonged dying (Mandrola, 2013). Although studies
addressing advanced directive planning in Siskiyou County are rare,
State of California Department of Justice (2002) identified that over
200,000 of Californians undergo elder abuse each year where due to lack
of planning devices such as advanced care directives, powers of
attorney, wills, and trusts. This study seeks to improve the quality of
end-of-life decision making in order to reduce the occurrence of these
challenges in Siskiyou County.
Purpose of study
The main purpose of this study is to enhance the quality of end-of-life
decision making, ensure it complies with client goals, involve the
family members in the discussions, address emotional concerns of
patients, and ensure that the end-of-life plan are patient centered.
This will reduce challenges faced by the older adults and their
families, which include futile care, medical treatment without choices,
prolonged dying, and increased suffering. The specific goals of the
study include:
Goal 1: Increase the number of older (above 50 years of age) with
advanced directives.
Goal 2: Incorporate other members of the health care community within
Siskiyou County to promote end-of-life planning.
Goal 3: Facilitate conversation and educate individuals to help them
make decisions regarding end-of-life care and increase advance directive
The recruitment criteria would mainly focus on age and profession where
participants should either be aged 50 years or above or caregivers at
nursing homes.
Method of study
A contextual action research will be the most appropriate design for the
research. The contextual action research is collaborative in nature,
which makes it appropriate in improving practice through performance of
actions, evaluation of actions’ effectiveness, and critical reflection
based on evidence collected from a participatory process (McNiff, 2013).
The research will conduct online training modules, which will target
health care professionals (including MD, RN, and social workers) about
how end-life decision making conversations and completion of advanced
directives can be enhanced. The researcher will also organize the
end-of-life decision making symposium at the Local Community Senior
Center. In this symposium, educated health care professionals will be
available to discuss the end-of-life choices and provide guidance on how
to complete advanced directives. The physician orders for
life-sustaining treatment (POLST) will also be available to discussions,
which can then be taken to the individuals’ primary health care
provider and signed. A successful project will then branch out to other
local community places of gathering.
Target population
The study targets the older adults aged 50 years and above from Siskiyou
County. The researcher will use health records at the Local Community
Senior Center to identify eligible participants. The study participants
will be selected using random sampling technique, which will reduce the
probability of bias in sampling and enhance generalizability of the
research findings to other senior centers.
Theoretical framework
The comfort theory, advanced by Katherine Kolba will provide a framework
for the present research project. There are three components of the
theory of comfort that will make significant contributions to the
project. The thirst component is relief, which is defined as the state
of having a severe discomfort mitigation or elevated. The second
component is ease, which is defined as the absence of specific
disorders. The third component is transcendence, which is defined as the
ability to rise above discomforts when they cannot be eradicated or
avoided. Katherine used the three components to define holistic comfort
of patients as the immediate experience where patients are strengthened
by meeting their relief, ease, and transcendent needs within four
contexts including psychospiritual, physical, environmental, and
sociocultural (Wolf, 2011). The physical context focuses on bodily
sensations as well as homeostatic mechanisms. The psychospiritual
context focus on internal awareness of self, which include sexuality,
esteem, personal relationships to a higher order of being, and meaning
in one’s life. The environmental context focuses on external
background of human experience including noise, light, temperature,
ambience, color, nature versus synthesis elements. The sociocultural
context focuses on family, interpersonal, cultural traditions, and
societal relationships (Masters, 2012).
The second part of the comfort theory focuses on four meta-paradigm,
which include person environment, health, and nursing. For the person
meta-paradigm, recipients include families, individuals, communities or
institutions that may be in need of healthcare. The environment
meta-paradigm include aspects of family, patient, or institutional
setting, which can be manipulated by health care providers or the nurse,
institution, or loved one in order to enhance comfort. The health
meta-paradigm is considered as the optimal functioning of family,
patient, nurse, of community. Nursing is the intentional assessment of
patients’ comfort, design conducted on comfort in order to address the
needs and reassessment of levels of comfort following the implementation
that is compared with the baseline (Masters, 2012).
Implications of the study
The purpose of this study is to enhance the quality of the end-of-life
decision making, encourage more involvement of family members in the
discussion, address emotional concerns of patients, and ensure that the
end-of-life plans are client centered. In pursuance of this purpose, the
study will enhance effective communication between health care providers
and patients and between patient and individuals who are given the power
of attorney. In addition, the successful completion of the project is
expected to enhance the patients’ and nurses’ understanding of the
significance of completing advanced directives as well as their
The open discussion of the content and significance of advanced
directive is expected to result in a positive attitude among patients
and health care providers. This will guide patients in choosing the
right surrogate or the right attorney who have the capacity to advocate
for and convey the will of the client. This will be achieved by ensuring
that the person selected to represent the wish of the older adult is
willing and able to understand the wish of the client and ensure it is
implemented when the client becomes incapacitated. The implication of
open discussion is that wishes of clients will be addressed and advanced
directives will be client centered.
The involvement of family members in discussions pertaining to advanced
directives will make open dialogues meaningful. This is because the
appointment of a family member or a person with the power of attorney
will help clients in communicating their wishes early in life. This will
prevent death of the older adults without choices, challenges of
undergoing unfruitful treatment procedures, and prolonged death.
Desired outcome
The goal of facilitating open discussions on advanced directives is to
enhance clients’ and nurses’ understanding the benefits and
procedures of completing advanced directives. It is expected that the
quality of end-of-life decision making among the older adults will
improve where clients will be able to make choices of the end-of-life
care services that are favorable to them and to their families in terms
of finance and convenience. In addition, the successful completion of
this project is expected to enhance the change of patients’ and
nurses’ attitude towards death where it will no longer be viewed as a
failure, but as a rite of passage that deserves an advance planning.
Most importantly, it is expected that the number of people completing
advance directives will increase from the baseline. This is expected to
reduce the total cost of end-of-life services, which has established an
escalating trend in the past.
Discussion and conclusion
The constructive and open discussion about the content and significance
of advance directives is the most appropriate approach that will improve
the quality of end-of-life decision making in Siskiyou County. This is
important given that California is among the leading states with the
highest number of cases of elder abuse State of (California Department
of Justice, 2002). The poor quality of end-of-life plan results from
lack of early planning devices, especially the advance health care plan.
In addition, prior information about the content, significance, and
different types of end-of-life care services available may reduce the
frequent change in preferences, which is common among the few members of
society with advance directives (Sharma et al., 2008).
By facilitating open discussions about the end-of-life plans, especially
advance directive among the family members and the entire society, the
end-of-life plans will capture the needs of the client. This will also
change the perception that discussing the end-of-life is a failure and
promote the notion that lack of end-of-life plans is the failure.
Advance directive is an effective means of self-determination of how the
older adults wish to end their lives (Rosenfeld, Wenger & Kagawa-Singer,
2000). This promotes patients autonomy and ensures that the end-of-life
plan is client-centered.
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