End-of-Life Care for Clients with Intellectual Disability

This literature review examines nurses' experiences in delivering end-of-life care to clients with intellectual disabilities. The review synthesizes findings from five articles, focusing on the challenges nurses face, such as recognizing behavioral patterns and time constraints. The study by Bailey, Doody and Lyons (2016) highlights the importance of effective communication and collaboration between families, professional, and non-skilled employees. Lord, Field and Smith (2017) emphasize the need for a more transparent community for individuals with intellectual disabilities. The review explores key findings, including the significance of teamwork, advanced planning, and understanding the individual in providing palliative care. The paper also discusses the strengths and limitations of the studies, offering insights into improving end-of-life care for this vulnerable population.

Running head: End of life care to clients with intellectual disability
End of life care to clients with intellectual disability
Name of the Student
Name of the University
Author Note

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End of life care to clients with intellectual disability
Introduction
Palliative care programs have been established over the years to assist all people with
life-limiting conditions (Bailey, Doody and Lyons 2016). Individuals with intellectual disabilities
(ID) have traditionally been exempt from awareness of death, bereavement and dying (Lord,
Field and Smith 2017). Evidence has demonstrated that registered nurses (RNs) appear unable to
give assistance to patients with intellectual disability. All nurses should be strongly concerned
with improving the safety of people with intellectual disability. Disabled people have the same
privilege as everyone else to the best acceptable safety standard. Despite this, no discussion
appears to be taking place about their actual welfare needs. Furthermore, the international
nursing literature under-examines the way that Registered Persons (RNs) should be qualified to
serve this patient community and their function in meeting their health needs (Appelgren et al.
2018). Intellectual disability workers may play a significant part in improving their awareness of
these problems. The wide range of palliative care programs is globally targeted at delivering
palliative treatment according to established necessity which has culminated in a rise in the
amount of people seeking palliative care facilities. In addition, increasing demographic patterns,
including ageing populations, growing life expectancy of people who are suffering from life-
limiting illnesses and the effect of illness on the well-being of individuals, would imply a greater
need for better palliative care (Lord, Field and Smith 2017). This paper will thus conduct a
literature review focusing on the nurses’ experiences of delivering end of life care to clients with
intellectual disability.

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End of life care to clients with intellectual disability
Search strategy
In order to conduct this literature review, several online databases like PubMed, CINAHL
and Google Scholar were searched with basic keywords like “End of life care”, “Palliative care”,
“Nurses’ experiences of palliative care”, “Intellectual disability and end-of-life”, “How people
with intellectual disability perceives death and dying”, “nurse end of life care for disable people”
and a combination of these. A total of 24 articles from all these databases were found to be
relevant and thus screened by skimming through the abstract that gave precise information about
the article. Articles lacking a proper abstract have been excluded from the study. The time frame
selected for searching the studies were in and after 2014 in order to get the recent findings on this
area. The articles selected were based on strong evidences and had conclusive research findings
and therefore, a total of 5 articles were selected for the study since they were matching the
inclusion criteria.
Discussion
Article 1
This is a quantitative descriptive cross-sectional survey conducted by Bailey, Doody and
Lyons (2016) with the aim to describe the delivery of Community nursing facilities for persons
with intellectual disabilities and palliative / end-of-life treatment requirements in one HSE area
of Ireland. An exploratory analytical survey utilizing a cross-section self-report questionnaire
was chosen for ease of use by respondents with the additional benefit of encoding and usage of
data research kits. validity and Reliability of the instruments were discussed by piloting the
questionnaire (n=10) to assess if the questions were straightforward and distinctive, and an
professional panel (statistician, quantitative analyst, two Palliative Care Clinical Nurse Experts

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End of life care to clients with intellectual disability
and a senior researcher) checked the instrument's face functionality and guaranteed usability.
Depending on input from the advisory team, small changes have been made to the language of
the specific queries. The survey comprised of a total population of Public Health Nurses (PHN),
Hospital Nurses, Clinical Nurses, Home Nurses Hospice and Palliative Care Nurses currently
working in the HSE region of Ireland. Connection to all staff was given by the respective
Directors of Healthcare/Public Health Nurse. A study kit containing an official letter, an
background folder, a questionnaire and a sealed, addressed envelope was circulated to the sample
community (N = 290). A response rate of 32% (n = 94) was achieved. Participants were asked to
return the questionnaire in 4 weeks, and an electronic alert was submitted to community nursing
after 2 weeks. Data was evaluated using version 18 of the SPSS. In the descriptional analysis the
frequencies were represented and trends of respondents recorded as statistical summaries were
established. Qualitative data is evaluated using the Burnard (2011) thematic analysis framework.
Of the participants (n=94), one (1.0 %) kept an RNID ranking, 80.9 percent (n=76) had taken
further education in the specific or advanced sector of the RNID category. 77.6 per cent (n = 73)
had a degree or higher education credential. Just 85 people with mental disability were assigned
over a three-year period to palliative / end-of-life treatment. Many who provided treatment
shared challenges, such as recognizing behavioral patterns, late reports, time constraints,
expertise and abilities. The advantages of liaison between families and technical and non-
professional interconnections were illustrated in the report. Findings offer insights into the value
of coordination, advanced preparation, understanding of the individual and good experience in
palliative / end-of-life treatment through collaboration among individuals with intellectual
disabilities.
Key findings of the study

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End of life care to clients with intellectual disability
How nurses support people with Intellectual disability during their end of life?
The purpose of the research by Bailey, Doody and Lyons (2016) is to explain how people
with intellectual disabilities and their requirements for palliative and end-of - the-life treatment
are addressed in the community. The results of the study indicate that relatives, professional and
non-skilled employees are related. Findings also provide insight into the significance of
teamwork, knowledge of the individual, advanced planning and best practices in palliative or end
of life care through collaboration. According to Bailey, Doody and Lyons (2016) effective
communication has an important role in supporting people with intellectual disability at the end
of life care. Effective communication abilities are characterized as a critical factor in supporting
intellectually handicapped patients and end-of-life or palliative care needs. Closer collaboration
between the two service companies has often been recognized as a method for addressing such
information differences and educational requirements highlighted. They build better connections
with patients and clients with an intellectual impairment and have strong interaction systems,
these benefits and encourage them in the practice. For achieving this, is a need to
have clear contact to intellectual disability nurses that are already acquainted with the client.
Representatives of this research indicate that intellectual disability and palliative treatment are
essentially separate. Recognition of this trend is positive, because it indicates a desire to establish
collective strategies in order to address the problems of a single discipline.
Strength and limitation of the study
The strength of the study is the use of quantitative descriptive cross-sectional survey as
the cross-sectional analysis is a statistical method used to gather data obtained over a particular
time frame. The obtained data were from a community of subjects with different characteristics
and ages named variables. The outcomes of analysis help to exclude and substitute

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End of life care to clients with intellectual disability
assumptions in the cross-sectional sample with empirical evidence on the individual variables
examined during the time. Also, the research design of the study is an exploratory descriptive
survey, which is undertaken to assess the complexity of the issue using statistical data.
Exploratory research gives researchers a better grasp of the issue; however findings typically are
not helpful in decision-making alone. Exploratory research may offer useful perspectives into a
particular scenario, since preliminary knowledge is meant to try to identify issues and to propose
theories. Furthermore, Ethical approval was given by the University Research Ethics Committee
and agreement was inferred by the submission of the completed questionnaire.
Link to practice
The research suggests that cooperation continues to draw upon each other's skills and that
a potential collaborative path is a significant one for palliative health and intellectual disability
programs. According to Bailey, Doody and Lyons (2016), effective communication is a
significant aspect of helping individuals suffering from intellectual disability at the end of their
lives. Effective cognitive skills are established as a vital component in helping mentally
handicapped individuals and end-of-life or palliative care needs. Closer cooperation between the
two utility providers has also been recognized as a way to address these gaps in knowledge and
education needs. They develop strengthened ties with mentally disabled patients and clients and
provide good processes of communication, which support and promote them in practice.
Article 2
This qualitative metasynthesis by Lord, Field and Smith, (2017) aimed to understand the
experiences of staff working and supporting individuals with intellectual disabilities having
issues of death, dying and bereavement. The search technique for this metasynthesis has been

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End of life care to clients with intellectual disability
advised by the recommendations suggested by Shaw (2012). The checklist for PRISMA 2009
advised the nature and arrangement of the study and for the documentation of structured reviews.
The components of the study issue have been defined in order to establish a detailed search
strategy. The SPIDER method was modified and search criteria were defined for observations,
patterns of concern and test design. In August 2016 a comprehensive search was conducted for
Medline, PsychInfo, Academic Search Complete, CINAHL, EMBASE and Science Web.
Quality was measured in such a manner that, while synthesizing the results, it could be assumed
to insure the findings are not biased against weaker results. The experiments were conducted
using the Critical Appraisal Skills Framework. After a thorough analysis of six databases,
thirteen articles were found. Three themes formed according to the formulation of line-of-
argument: (i) talking about death is hard: negotiating the uncertainty in death, dying and
bereavement; (ii) the commitment to promoting a “good death”; and (iii) the grief behind the
professional mask. “A cautious silence: The taboo of death” was an overarching theme of the
study. The study showed that it is important for a more transparent community of intellectual
disability settings for supporting individuals with dying, death and bereavement problems.
Key findings of the study
Experience of nurses in delivering palliative care to people with Intellectual disability
According to the authors, people with intellectual disability have traditionally been
removed from information of death, disability and dying. Intellectual disability care staff may
play a significant part in strengthening their awareness of these problems. Internationally, the
death rate is considered to be more extreme in individuals with intellectual disabilities as they die
in young age than anyone in the community with non-intellectual illness. Many disorders
contributing to intellectual disabilities are attributed to life shortening degenerative diseases,

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End of life care to clients with intellectual disability
including the Down syndrome associated to the early development of Alzheimer's, indicating
that these subgroups lead partly to the reduced average life span of people having ID in general.
The fact that individuals with IDs 'depravity perceptions internationally resemble the general
public has often been acknowledged. The study suggest that people with ID's expression of
sadness is not based on a full comprehension of the meaning of death. Likewise, individuals with
IDs have also been exempted from their own death consultations, premature diagnostics and end-
of-life care by staff who have often opted to remove patients early on with the disorder. Research
reported potential explanations why people with ID are not sharing negative news. These involve
the notion of "ignorance is bliss" ignoring the potential stress on the patient and believing or
assessing that people with ID do not completely comprehend or acknowledge the disease's
timeline. Staff-specific considerations have affected such judgments, including challenges
controlling feelings themselves or lack of forecasting understand-how. There is, furthermore,
also evidence that including people with ID in deprivation practices may be beneficial. People
with ID indicated that they are honoured to have been active in such ceremonies, including
seeing the corpse, attending funerals, visiting the grave and honouring the deceased. Lord, Field
and Smith (2017) suggest that IDS staff will be in a role to understand and accept issues of
depravity and PWID's own demise. However, if staff want to decide how best to offer such help,
their history in favour of mortality, disability and bereavement in intellectual disability
environments needs to be fully recognized.
Strength and limitation of the study
This metasynthesis illustrates a variety of fields that require more study. Further analysis
is required for the pain felt by the participants of these studies. Further insight on the problems
outlined in this analysis will be generated by a qualitative examination of the support workers

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End of life care to clients with intellectual disability
environment after the death of the PWID. The aim of this analysis was to highlight details of
core problems impacting workers serving people with mental disabilities that are not meant to be
generalized. This should not be presumed that such problems are applicable to all PWID-
supported organizations. It is also necessary to assess how they are reflected within an particular
program before any adjustments are made or specific advice is provided. However, this study
presents the first documented systemic analysis, which reflects primarily on the experience of
workers in intellectual disability environments in care in PWID of death, dying and bereavement.
Link to practice
The outcomes of this metasynthesis have many implications for clinical practice. First, it
established the need for workforce instruction on topics relating to care for PWID of death,
disability and bereavement. Training has demonstrated that workers confidence in helping PWID
with disability has been strengthened. The results from this metasynthesis indicate that such
preparation will provide PWID material about how the meaning of death is understood; methods
of communicating with PWID regarding death; how to recognize and respect PWID's grief; and
how workers should accept and handle their own concerns.
Article 3
The quantitative research by Northway et al. (2019) is directed at answering to the
problem how and why will nurses work to manage individuals with intellectual disabilities at the
end of their lives? A minimum of 38 intellectual disability support providers in the United
Kingdom offering help to 13,568 people with intellectual disabilities have been assessed. For this
population, 247 fatalities were reported for two processes and SPSSX was eventually entered for
review. Services were rendered by a private system in the United Kingdom which were either
integrated social care facilities (supported houses that live which treatment) or care facilities

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End of life care to clients with intellectual disability
specifically for persons with intellectual disabilities. Registered nurses are working in healthcare
facilities along with other service professionals to maintain the right to 24-hour treatment for the
community. The broader research used to collect statistics on deaths in facilities serving 11,000
people in the United Kingdom. The research was formulated to continue over 18 months to
enable potential drop off or non-response at various points of the analysis. Potential service
suppliers have been established across many channels, including employee awareness,
commissioner workshops and numerous specialist networks. Thirty-eight of 80 service
companies (47.5%) decided to take part. Information on the age and ethnicity of persons with
developmental disabilities served primarily in facilities specifically for individuals with mental
disability is sought by such programs. Such 38 care agencies assisted 13,568 mentally disability
persons in the United Kingdom and returned mortality statistics from that group. In one of the
four UK nations, only two companies have refused to provide information on the size of their
services. Statistics from the other 36 service agencies indicated that in 3080 treatment
environments they assisted 12,804 individuals. The bulk of citizens resided in England (n 1⁄4
10,463; 81,7%), 8,9% in Wales, 7,6% in Scotland (n 1⁄4 969) and 1,8% in Northern Ireland (n 1⁄4
232). This research specifically sought to gather statistics on the death of persons with
intellectual disabilities (n 1⁄4 222) that had been enrolled in social services before their demise,
irrespective of their place of death. Statistics on 25 deceases residing in mentally handicapped
treatment centers, though, were also collected and these details have been used in this paper
because of the emphasis on nursing assistance.
Key findings
The findings revealed that most fatalities happened between 50 and 69, with respiratory
disease being the most frequently recorded cause of death. Both hospital and community nurses

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End of life care to clients with intellectual disability
were active in delivering care for persons during the final three months of their lives and often
nurses from other settings supported the people. According to the authors, Nursing is committed
to supporting individuals with intellectual disabilities at the end of their lives, and adequate care
is required to serve this role. This could entail a transition in curricula and future studies to assess
the effect of such a shift on nursing care for this demographic.
Northway et al. (2019) suggest that the treatment of people with intellectual disabilities is
carried out by both private and hospital-based service services throughout their lifetimes and is
usually considered favourable. In order to bring about a transition, all nurses must be properly
trained to insure that they are willing to support this community with high-quality treatment.
This involves the establishment of technical and social policy structures and the study is
conducted to assess the effect on nursing care for people with intellectual disabilities of any
revisions to these frameworks during their last months of life. Moreover, since globally visible
health gaps among persons with intellectual disabilities are obvious, the health care sector will
focus on this essential initiative globally. This will require the creation of cross-
national, international, intellectual disability health research (Northway et al. 2019).
Strength and limitation of the study
This paper recorded longitudinal statistics on last months of existence of a fairly
representative population of individuals with intellectual disabilities throughout the United
Kingdom, utilizing known end-of-life treatment. Every area of the United Kingdom had a
treatment center operated by the participating providers. In fact, the response performance was
outstanding. Core data were collected for 247 fatalities out of 248 (99.6 per cent) reported by
service providers and 178 (72.1 per cent) follow-up data were collected. These are significant
strengths and are critical considering the scarcity of these data for this population. Nonetheless,

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End of life care to clients with intellectual disability
there are some major drawbacks or limitations of the study. They did not allow for the
opportunistic incorporation of nursing homes for people with developmental disabilities to assess
the generalizability of results within this field. In comparison, only a limited amount of nursing
home facilities were listed.
Link to practice
The study indicates that people with mental disorders may suffer unnecessary and
unexpected deaths and the absence of cooperation on end-of-life treatment. Many had
interactions with neighbourhood or medical care services throughout their last months of
existence. Thus, the research suggests that nurses have the ability to have a huge effect on
enhancing end-of-life treatment for individuals with mental disabilities. In order to understand
this ability, it is important to improve curriculum to ensure that nurses are comfortable and
qualified to fulfil this role.
Article 4
The purpose of this qualitative study by Wagemans et al. (2015) was to explain the
method from a clinical point of view. Nine interviews with semi-structured with patients who
served for chronic treatment after death with intellectual disabilities patients in the Netherlands
were carried out in this qualitative analysis. All interviews were recorded and transcribed directly
on a digital voice recording system. The identities and other sensitive information of the
participants were omitted and the code substituted. Field notes were taken during each interview
to document observations of the participants and their setting, and to document certain
significant comments sometimes made after the discussion ended. The interview guide was
tailored to fit emerging themes, adopting the concepts of Grounded Theory.

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End of life care to clients with intellectual disability
Key findings
"At the core of communication" was the key feature of the role of the nurses and how
they assisted the patient. The study showed that patients with intellectual disabilities may
understand why nurses would relate so valuable contribute on such a significant subject as the
decision-making phase at the end of life. Intellectually disabled individuals have not engaged in
decisions themselves. The nurses didn't realize who actually made the call at the close of their
lives. In order to help end-of-life decision-making, nurses are in a special role. It is necessary to
use their expertise in this decision-making phase and offer them a more powerful position.
Patients would generally play an important role in every decision making process which affects
their lives in medical settings, but people with ID may sometimes cannot. The evaluation of an
individual's decision-making capability is part of the decision-making phase and is therefore not
explicit. England and Wales have a pattern such that therapeutic decisions are focused on a
public interest appraisal, not on artificial decision-making, for all those who are lacking the
requisite intellectual capacity; it gives an immense opportunity to take a wide range of views into
account. The representatives of the patient take the role of a substituted decision maker. In fact,
Intellectual disability-trained nurses do not officially add to the decision-making phase, although
they sometimes take charge of individuals having Intellectual disability for quite a long period.
In the final review, physicians who deal for Intellectual disability patients are in charge of
decision making and end-of-life treatment and care. Ideally, family members, nurses and
physicians should collaborate together in determining whether individuals with Intellectual
disability provide regular end-of-life treatment, understand each other, and seek to establish a
rational palliative care program. Such a course to palliative treatment also includes the decision-
making of aged patients, patients suffering from chronic cancer or is presumed dying. Such

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End of life care to clients with intellectual disability
decisions may involve termination of or not implementation of medical care, relieve of pain with
probable side effect shortening of life, and terminating the life of a patient with or without his
approval. These actions are highly relevant in most human lives and play a major role in the
cycle of destroying half the fatalities in western countries. Contributions by nurses in the end-of-
life treatment are also critical and complex for individuals with Intellectual disability. For several
decades they have also been active with the lives of such individuals, caring for them every day,
or providing them with medical treatment in the family or assist them in their home. As a result
of this, they have learned a lot of the interests and desires and know them more personally than
any of their relatives. As a consequence, they will tend to be better prepared to assist individuals
with Intellectual disability, along with physicians and family members when decision-making on
the end of life is required. In comparison with acute nurses working in the hospitals, who looks
after patients for a limited period, the role ID nurses may be very different. For nurses who
operate in Intellectual disability treatment environments the balance between commitment and
emotional detachment may be challenging (Wagemans et al. 2015).
How nurses perceive end of life decision making for people with intellectual disability?
Evidence suggests that nurses believe that they are at the center of contact across the
individual at the end of their lives. They looked after the patient, observed and understood
problems and signs, and then told the doctor and the family. The research showed that people
with Intellectual disability had spent their life in the same treatment environments where they
had died. Staff understood health illness and viewed end-of-life treatment as a significant and
natural outcome of their profession (Wagemans et al. 2015). The overall findings of the study
show that the nurses briefed in the research believe that they much involved and played a central
role in communicating on patient treatment which, eventually, will affect and impact the quality

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End of life care to clients with intellectual disability
of end-of-life care delivered to the patients. Since they have met individuals with Intellectual
Disability and have been looking after them for over a decade, they have good understanding of
the desires and expectations of the patients and expressed trust in their own opinions or
perspectives. Most notably, while they felt themselves accountable for a well- end-of-life care,
there were conflicts because the quality of life perspectives were varying between family and
nurses (Wagemans et al. 2015).
Strength and limitation of the study
The research was limited by the reality that only a small number of nurses in the
Netherlands had surveyed in cases of residential treatment. They don't know whether their
findings would have been modified if they have consulted community-based nurses who have
long-standing experience of patients (and should only be treated while they become critically ill).
Furthermore, they have only studied the end-of-life decision-making mechanisms affecting
families.
Link to practice
The report proposes an effective and consistent role for nurses involved in chronic care in
the end-of-life decision-making process for people with ID. A mechanism must be built in which
all parties are engaged in a timely phase of deliberation about what is required to give
appropriate treatment to ID patients. Advance care preparation and joint decision-making are
part of this process, as are training classes on end-of-life conversations for practitioners.
Interventions to educate and encourage decision-making capabilities for individuals with ID
themselves will be part of the approach.

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End of life care to clients with intellectual disability
Article 5
The Editorial by Stancliffe, Wiese and Read (2017) strives to place unique issue articles
in a broader context. They seek to recognise areas of convergence and development in end of life
research and to define a number of relevant topics and/or categories of participants that remain
uninvestigated or unexamined. The topic involves a variety of experiments employing different
methodological approaches to explain the perspective of people with mental disabilities and their
advocates, as would be anticipated in a study area. There are also numerous analyses using
hybrid approaches and a comprehensive text. An overview of community level evidence to
understand the severity of end-of-life problems impacting people with intellectual disabilities in
a community sense reflects a significant gap in this topic. An important aspect of this particular
topic is the subject of end-of-life studies of people with intellectual disabilities. To date,
intellectually impaired study subjects have been mainly individuals of milder mental incapacity.
Within the latest topic two articles concentrated primarily on people with serious, profound
developmental disorders and/or multiple affected individuals who might not be able to articulate
their views within traditional ways. Evidently, the expectations and perceptions of these
individuals will be part of study and in these two articles the writers have obtained input from
clinicians and supporters who know these individual well.
Stancliffe, Wiese and Read (2017) states that within a societal context, the culmination of
life takes place. This social condition is critical if the individual suffering, families, colleagues,
disability staff and practitioners want to help and obtain the outcome. Research ought to look at
perspectives and perceptions of several communities, so that people with intellectual disabilities
are well understood at the end of their lives.
Strength and limitation of the study

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End of life care to clients with intellectual disability
No strength and/or limitations have been reported in the study.
Link to practice
In order to offer readers a chance to explore the entire variety of issues surrounding
mortality, death, practices of death, memories and sufferings, the author intentionally selected
the term End of life. The variety of records in this issue shows that they will be actively working
towards this aim. Nonetheless, many significant end-to-life subjects or groups of researchers here
and elsewhere have gained little to no publicity.
Conclusion
The fact that nurses have a major role in delivering high quality palliative or end-of-life
care to the patients are grounded on strong researches and evidences. Every individual must
treated in a similar way during their end of life with compassion, kindness and sympathy. Also,
evidences show that they are often ignored or excluded from having knowledge of their
condition and circumstances. People with Intellectual Disability also have the same privilege of
receiving the same treatment during their end-of-life. However, nurses often fail to provide the
optimum care to these patients due to a number of factors, one of which is lack of knowledge and
awareness. Thus, there is a need to provide them adequate training and education regarding the
same so that it can lead to an effective outcome.

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End of life care to clients with intellectual disability
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