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Journal ArticleDOI

Personal Dignity in the Terminally Ill from the Perspective of Caregivers: A Survey among Trained Volunteers and Physicians

16 Sep 2013-Journal of Palliative Medicine (Mary Ann Liebert Inc.)-Vol. 16, Iss: 9, pp 1108-1114
TL;DR: It seems that SCEN physicians consider the physical aspects of suffering to be most influential and problematic in practice in preserving dignity, while volunteers think psychosocial aspects are most important in preserving Dignity at the end of life.
Abstract: Background: Although dignity is increasingly considered a goal of palliative care, little research has evaluated the understanding of dignity at the end of life from a caregiver's perspective. Objective: The study objective was to investigate and compare the views of trained volunteers and SCEN physicians on maintaining dignity for patients reaching the end of life. Design: The study is a survey questionnaire study. Subjects: Subjects were two groups of caregivers involved in care for dying patients: trained volunteers (n=236) and end-of-life consultants (SCEN physicians; n=427). Measurements: Measurement was done via the Dutch version of the 22-item Patient Dignity Inventory on symptoms and experiences that have been shown to influence the sense of dignity in terminally ill patients. Respondents were asked to rate on a five-point scale the extent to which they considered the items as influential on dignity in terminally ill patients, and as problematic in practice in maintaining dignity for pati...

Summary (2 min read)

Introduction

  • The interest in dignity at the end of life has significantlyincreased in the past decade.
  • 1–3 Dignity is important to 92% of the Dutch general public when asked what they consider as important in their dying phase.
  • 18 These 22 items formed the PDI prototype which was later revised into the 25-item Patient Dignity Inventory (PDI).
  • They found that 95% of the patients agreed that maintaining one’s dignity is very important at the end of life, and 99% of the physicians and also 99% of other care providers showed strong agreement with this attribute.20 A clear understanding of how caregivers understand the factors that influence dignity in terminally ill patients can help to improve palliative care.

Study design and population

  • A written structured questionnaire was distributed amongst two groups of caregivers with experience in caring for terminally ill patients.
  • The first group consisted of trained volunteers providing care to dying patients at home or in a hospice who were members of the National Organisation of Volunteers in Palliative Terminal Care (VPTZ).
  • Volunteers who attended a congress organized by the VPTZ in the fall of 2006 were asked to complete a written questionnaire including questions on dignity.
  • The other group consisted of Support and Consultation on Euthanasia (SCEN) physicians who participate in a formal network of trained consultants.
  • 24 SCEN physicians receive a short questionnaire that serves as a monitoring device of their activities for the SCEN network of consultants every year.

Measurement instrument

  • This study was based on the PDI prototype described in the introduction, including 22 items covering the following domains: physical, psychosocial, social, and existential.
  • The PDI items were introduced by the following text:.
  • ‘‘The term dignity is often used when talking about the last phase of life.
  • Little is known about how dignity is understood.
  • Because of your experience in providing care to patients near the end of life, the authors are very interested in how you understand dignity.’’.

Analysis

  • First the authors examined whether each PDI item was considered influential in personal dignity in terminally ill patients, and second, whether the items were seen as factors that can make it problematic maintaining dignity in practice, by calculating the percentage of volunteers and SCEN physicians who scored 4 or 5 on the five-point scale per item.
  • Differences in rating between volunteers and SCEN physicians were described using a 95% confidence interval.
  • Furthermore, the authors constructed a top 10 list per caregiver group to show which items were most frequently considered as influential in the sense of personal dignity and which items were most often considered a factor that can make it problematic to preserve dignity in practice.

Results

  • A total of 236 volunteers completed the questionnaire.
  • Factors relevant to a patient’s personal dignity Table 1 shows the percentages of volunteers and SCEN physicians who indicated that the PDI items influence the sense of dignity in patients at the end of life to a (very) large extent.
  • Again, SCEN physicians generally scored lower on the items compared to volunteers.
  • Top 10 PDI items most influential and problematic.
  • The item ‘‘feeling you do not have control over life’’ is more often considered influential than problematic in practice (third ranked versus eighth rank); and ‘‘feeling your privacy has been reduced’’ is more often considered problematic in practice than influential on dignity (third ranked versus seventh ranked).

Physical aspects

  • Whereas SCEN physicians are required by the Dutch euthanasia law to assess the patient’s suffering and whether it is unbearable.
  • 18 Chochinov and colleagues found that the following two social items were the highest-ranked items by patients: ‘‘feeling a burden to others’’ and ‘‘not being treated with respect or understanding.’’.
  • It seems that the role and responsibilities of a caregiver involved in the care of terminally ill patients affect the factors that they think influence dignity.

Discussion

  • The present study was conducted to gain more insight into views of caregivers involved in caring for terminally ill patients on maintaining personal dignity for patients reaching the end of life.
  • Overall, volunteers indicated the items more frequently as influential to dignity and as problematic in practice to maintaining dignity at the end of life compared to SCEN physicians.
  • Volunteers gave significantly higher ratings than SCEN physicians to most of the social items and to half of the psychological and existential items.
  • An important strength is that their study population consisted of two groups of caregivers that can play a valuable role in caregiving for terminally ill patients.
  • The authors do not know the extent to which the trained volunteers are representative of untrained nonprofessional volunteers with regard to their opinions about factors relevant for dignity.

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Content maybe subject to copyright    Report

Personal Dignity in the Terminally Ill
from the Perspective of Caregivers:
A Survey among Trained Volunteers and Physicians
Gwenda Albers, PhD,
1,2
Henrica C.W. de Vet, PhD,
3
H. Roeline W. Pasman, PhD,
1,2
Luc Deliens, PhD,
1,2,4
and Bregje D. Onwuteaka-Philipsen, PhD
1,2
Abstract
Background: Although dignity is increasingly considered a goal of palliative care, little research has evaluated
the understanding of dignity at the end of life from a caregiver’s perspective.
Objective: The study objective was to investigate and compare the views of trained volunteers and SCEN
physicians on maintaining dignity for patients reaching the end of life.
Design: The study is a survey questionnaire study.
Subjects: Subjects were two groups of caregivers involved in care for dying patients: trained volunteers (n = 236)
and end-of-life consultants (SCEN physicians; n = 427).
Measurements: Measurement was done via the Dutch version of the 22-item Patient Dignity Inventory on symp-
toms and experiences that have been shown to influence the sense of dignity in terminally ill patients. Respondents
were asked to rate on a five-point scale the extent to which they considered the items as influential on dignity in
terminally ill patients, and as problematic in practice in maintaining dignity for patients in the last phase of life.
Results: Overall, volunteers indicated items more frequently as influential to dignity and as problematic in
maintaining dignity at the end of life, compared to SCEN physicians. Volunteers gave significantly higher
ratings than SCEN physicians to most of the social items, and to half of the psychological and existential items.
Conclusions: It seems that SCEN physicians consider the physical aspects of suffering to be most influential and
problematic in practice in preserving dignity, while volunteers think psychosocial aspects are most important in
preserving dignity at the end of life. These findings suggest that the role and responsibilities of caregivers
involved in care for terminally ill patients affect the factors that they think influence dignity.
Introduction
T
he interest in dignity at the end of life has significantly
increased in the past decade. This is probably due to the
fact that empirical research has shown that loss of dignity is an
important concern for patients at the end of life.
1–3
Dignity is important to 92% of the Dutch general public
when asked what they consider as important in their dying
phase.
4
In addition, loss of dignity is one of the most common
reasons to formulate an advance directive
5
and one of the
most frequently mentioned reasons for requesting euthanasia
or physician-assisted suicide in the Netherlands.
2,6
Maintaining dignity has been considered one of the main
goals of palliative care.
7–10
A variety of studies identified
factors and themes that may have an impact on the sense of
dignity at the end of life.
11–16
Chochinov and colleagues per-
formed a qualitative study focusing on how dying cancer
patients understand and define dignity, and developed an
empirical model of dignity to understand how patients face an
advancing terminal illness.
17
From the themes and subthemes
of this model, a list of 22 items concerning symptoms and
experiences that influence the sense of dignity of terminally ill
patients was developed.
18
These 22 items formed the PDI
prototype which was later revised into the 25-item Patient
Dignity Inventory (PDI).
19
Although it is important to un-
derstand how patients understand dignity at the end of life,
terminally ill patients are often not able to communicate
anymore about their preferences for end-of-life care and what
1
Department of Public and Occupational Health,
3
Department of Epidemiology and Biostatistics, EMGO Institute for Health and Care
Research,
2
Expertise Center for Palliative Care, VU University Medical Center, Amsterdam, the Netherlands.
4
End-of-Life Care Research Group, Ghent University and Vrije Universiteit Brussel, Brussels, Belgium.
Accepted May 14, 2013.
JOURNAL OF PALLIATIVE MEDICINE
Volume 16, Number 9, 2013
ª Mary Ann Liebert, Inc.
DOI: 10.1089/jpm.2012.0307
1

supports their personal sense of dignity. As a consequence,
family or caregivers might get involved in a complex decision-
making process and might need to set priorities for care. A
previous study by Steinhauser and colleagues investigated
factors considered important at the end of life by patients,
their families, physicians, and other care providers. They
found that 95% of the patients agreed that maintaining one’s
dignity is very important at the end of life, and 99% of the
physicians and also 99% of other care providers showed
strong agreement with this attribute.
20
A clear understanding
of how caregivers understand the factors that influence dignity
in terminally ill patients can help to improve palliative care. In
addition, it is of interest to consider which factors hinder the
maintenance of dignity in practice from the view of caregivers
experienced in caregiving at end of life. Therefore, the current
study explored the understanding of dignity of trained vol-
unteers providing care to dying patients at home or in a hospice
and physicians who received training to provide their col-
leagues with information and expert advice concerning all as-
pects of euthanasia. The aim of this study is to investigate and
compare the views of these two different groups of caregivers
who are involved in care for terminally ill patients.
Methods
Study design and population
A written structured questionnaire was distributed amongst
two groups of caregivers with experience in caring for termi-
nally ill patients. The first group consisted of trained volunteers
providing care to dying patients at home or in a hospice who
were members of the National Organisation of Volunteers in
Palliative Terminal Care (VPTZ).
21
Most of the volunteers have
personal and professional experience in caregiving at the end of
life and all of them are being trained regularly by the VPTZ.
Volunteers who attended a congress organized by the VPTZ in
the fall of 2006 were asked to complete a written questionnaire
including questions on dignity.
The other group consisted of Support and Consultation on
Euthanasia (SCEN) physicians who participate in a formal
network of trained consultants. Next to their work as prac-
ticing physician they provide their colleagues with informa-
tion and expert advice concerning all aspects of euthanasia.
22
The Dutch euthanasia law stipulates that consultation with
another physician is required in the case of a euthanasia re-
quest; consequently the SCEN physician has to visit the pa-
tient and has to judge whether the request for euthanasia is in
accordance with the criteria for due care, which means that
they assess whether the patient’s suffering is unbearable and
without prospect of improvement.
23
SCEN physicians pro-
vide about seven consultations per year, and mostly for pa-
tients receiving home care.
24
SCEN physicians receive a short
questionnaire that serves as a monitoring device of their ac-
tivities for the SCEN network of consultants every year. In
January 2007 all 497 SCEN physicians were sent a question-
naire including questions on dignity.
Measurement instrument
This study was based on the PDI prototype described in the
introduction, including 22 items covering the following do-
mains: physical, psychosocial, social, and existential.
19
The
extent to which the respondents thought that the items have
influence on maintaining patients’ personal dignity in the last
phase of life was rated on a five-point scale (1 = not at all;
2 = slightly; 3 = somewhat; 4 = to a large extent; 5 = to a very
large extent). The PDI items were introduced by the following
text:
‘The term dignity is often used when talking about the last
phase of life. However, little is known about how dignity is
understood. Because of your experience in providing care to
patients near the end of life, we are very interested in how you
understand dignity.’
Then the respondents were asked, ‘Could you please rate
(based on your experience) the extent to which you think that
the following items (1) influence the sense of personal dignity
in patients in the last phase of life? and (2) make it problematic
in practice to maintain personal dignity in patients in the last
phase of life?
Analysis
First we examined whether each PDI item was considered
influential in personal dignity in terminally ill patients, and
second, whether the items were seen as factors that can make
it problematic maintaining dignity in practice, by calculating
the percentage of volunteers and SCEN physicians who
scored 4 or 5 on the five-point scale per item. Differences in
rating between volunteers and SCEN physicians were de-
scribed using a 95% confidence interval. Furthermore, we
constructed a top 10 list per caregiver group to show which
items were most frequently considered as influential in the
sense of personal dignity and which items were most often
considered a factor that can make it problematic to preserve
dignity in practice.
Results
A total of 236 volunteers completed the questionnaire. No
response rate can be given, as there is no precise information
about the number of volunteers who attended the congress.
The 236 volunteers who completed the questionnaire repre-
sent 4% of all members of VPTZ and were a representative
sample of all VPTZ volunteers with regard to sex; however,
the respondents were somewhat older (mean age 59.5) com-
pared to all volunteer members of the VPTZ (mean age 54.8).
Of the SCEN physicians, 427 (86%) responded to the ques-
tionnaire.
Factors relevant to a patient’s personal dignity
Table 1 shows the percentages of volunteers and SCEN
physicians who indicated that the PDI items influence the
sense of dignity in patients at the end of life to a (very) large
extent. Overall, SCEN physicians gave lower scores to the
items than volunteers. All social items, and in particular the
items ‘not being treated with respect or understanding’ (58%
versus 33%) and ‘not feeling supported by your community’
(43% versus 24%) were significantly more highly scored by
volunteers than by SCEN physicians. More than half of the
volunteers associated the psychological items ‘not being able
to accept things the way they are’ and ‘feeling depressed or
anxious’ as aspects that influence the sense of dignity in ter-
minally ill patients, while one third of the SCEN physicians
considered those items to be associated with a sense of dig-
nity. In addition, two of the six physical items and half of the
2 ALBERS ET AL.

existential items were significantly more highly scored by
volunteers than by SCEN physicians. The existential item
‘uncertainty regarding illness’ was rated as influential to a
sense of dignity by only 10% of the SCEN physicians, while
37% of the volunteers made this association.
Factors problematic in maintaining
a patient’s dignity
Table 2 shows the percentage of volunteers and SCEN
physicians who considered that the presence of the PDI items
in patients reaching the end of life make it problematic in
practice maintaining dignity. Again, SCEN physicians gen-
erally scored lower on the items compared to volunteers. The
same items that were significantly more often considered
relevant to a patient’s sense of dignity by volunteers than by
SCEN physicians were significantly more often considered
problematic in practice by volunteers, except for the items
‘changes in physical appearance’ and ‘feeling a burden to
others.’
Top 10 PDI items most influential and problematic
Table 3 shows the 10 items most frequently scored as
having influence on sense of dignity and the 10 items most
often scored as problematic in maintaining dignity in practice
according to volunteers and SCEN physicians.
Volunteers considered eight items influential as well as
problematic in practice. However, the item ‘feeling you do
not have control over life’ is more often considered influential
than problematic in practice (third ranked versus eighth
rank); and ‘feeling your privacy has been reduced’ is more
often considered problematic in practice than influential on
dignity (third ranked versus seventh ranked). SCEN physi-
cians considered nine similar items most frequently as influ-
ential as well as problematic in practice. Once more, the
ranking of these items differs; for example, ‘experiencing
distressing symptoms’ has been more often considered an
item that can make it problematic to maintain dignity in
practice (first ranked) than it has been considered influential
to dignity (ranked sixth).
Six items are considered influential as well as problematic
in practice by volunteers and SCEN physicians: ‘feeling a
burden to others,’ ‘not being able to independently manage
bodily functions,’ ‘feeling you do not have control over your
life,’ ‘not feeling worthwhile or valued,’ ‘feeling your pri-
vacy has been reduced,’ and ‘not being able to think clearly.’
The top 10 items cover all four domains, the physical, psy-
chological, social, and existential domains. Items representing
Table 1. Influence of Physical, Psychological, Social, and Existential Aspects on Sense of Dignity
in Terminally Ill Patients according to Trained Volunteers and SCEN Physicians
a
Trained volunteers SCEN physicians
n = 236
b
n = 427
c
% 95% CI % 95% CI
Physical aspects
Not being able to independently manage bodily functions 69 63–75 67 62–72
Changes in physical appearance
d
52 45–58 28 24–32
Experiencing distressing symptoms 51 44–58 49 44–54
Not being able to carry out important roles 45 38–51 36 31–41
Not being able to carry out tasks of daily living 42 36–49 34 29–38
Not being able to continue with usual routines
d
41 34–47 16 12–19
Psychological aspects
Not being able to accept things the way they are
d
59 52–65 31 26–35
Not being able to think clearly 54 47–60 55 50–60
Feeling depressed or anxious
d
51 44–58 29 25–34
Not being able to mentally fight 47 40–53 38 33–43
Social aspects
Feeling a burden to others
d
70 64–76 54 50–59
Feeling your privacy has been reduced
d
58 51–64 44 39–49
Not being treated with respect or understanding
d
58 52–65 33 29–38
Not feeling supported by your community
d
43 37–50 24 20–29
Existential aspects
Feeling you do not have control over your life 66 59–72 62 57–67
No longer feeling like who you were 61 55–68 53 48–58
Not feeling worthwhile or valued
d
60 53–66 45 41–50
Feeling life no longer has meaning or purpose 53 46–59 44 39–49
Not feeling you made a meaningful or lasting contribution
d
46 39–52 24 20–29
Thinking how life might end
d
39 33–46 15 12–19
Uncertainty regarding illness
d
37 31–44 10 7–13
Not having a meaningful spiritual life 29 22–35 26 22–31
a
Percentage that score 4 (to a large extent) or 5 (to a very large extent) on a scale of 1 to 5.
b
Between 7 and 33 missing observations per aspect.
c
Between 18 and 34 missing observations per aspect.
d
Significant difference between volunteers and SCEN physicians.
CAREGIVERS’ PERSPECTIVE ON DIGNITY IN TERMINALLY ILL 3

the social domain were more often highly ranked in the vol-
unteers’ top 10, while items representing the physical domain
were more often highly ranked in the SCEN physicians’ top
10 items.
An interesting finding is that ‘not being treated with re-
spect or understanding’ is only included in the volunteers’
top 10 items, and ‘experiencing distressing symptoms’ is
only included in the physicians’ top 10.
Discussion
The present study was conducted to gain more insight into
views of caregivers involved in caring for terminally ill patients
on maintaining personal dignity for patients reaching the end
of life. Therefore, we explored how trained volunteers and
SCEN physicians considered the influence of the PDI items and
the extent to which the items can make it problematic main-
taining dignity in practice. Overall, volunteers indicated the
items more frequently as influential to dignity and as prob-
lematic in practice to maintaining dignity at the end of life
compared to SCEN physicians. Volunteers gave significantly
higher ratings than SCEN physicians to most of the social items
and to half of the psychological and existential items.
An important strength is that our study population con-
sisted of two groups of caregivers that can play a valuable role
in caregiving for terminally ill patients. Another strength of
the current study is the high response of the SCEN physicians.
The volunteers included in the present study have been
trained in caregiving at the end of life and might possibly be
more involved in their work, as they attended a congress on
this topic. This probably made them better able to imagine
connections between various factors and the influence on the
sense of dignity in patients in the final phase of life, and
therefore made them a better group of informants, which
enhances the quality of the data. However, we do not know
the extent to which the trained volunteers are representative
of untrained nonprofessional volunteers with regard to their
opinions about factors relevant for dignity. Another limitation
of this study is that we do not know the response rate of the
volunteers, as there was no exact information about the
number of volunteers who attended the congress where the
questionnaire was distributed.
The findings of the current study show that the under-
standing of SCEN physicians differs from that of volunteer
caregivers regarding the factors that have been shown to be
important to the sense of dignity of terminally ill patients. The
Table 2. Extent to Which Physical, Psychological, Social, and Existential Aspects Are in Practice
Problematic for Terminally Ill Patients Maintaining Their Sense of Dignity
According to Trained Volunteers and SCEN Physicians
a
Trained volunteers SCEN physicians
n = 236
b
n = 427
c
% 95% CI % 95% CI
Physical aspects
Not being able to independently manage bodily functions 58 51–65 56 51–61
Experiencing distressing symptoms 46 38–53 57 42–52
Not being able to carry out tasks of daily living 44 37–51 34 29–39
Not being able to continue with usual routines
d
35 28–42 18 14–22
Not being able to carry out important roles 33 26–40 27 22–31
Changes in physical appearance 22 18–26 22 18–26
Psychological aspects
Not being able to think clearly 54 47–61 56 51–61
Not being able to accept things the way they are
d
51 44–58 35 31–40
Feeling depressed or anxious
d
46 39–53 33 28–38
Not being able to mentally fight 38 31–45 35 30–39
Social aspects
Feeling a burden to others 60 53–67 48 43–53
Feeling your privacy has been reduced
d
56 48–63 39 34–44
Not being treated with respect or understanding
d
54 47–61 31 27–36
Not feeling supported by your community
d
43 36–50 20 16–24
Existential aspects
Not feeling worthwhile or valued
d
54 46–61 35 30–40
Feeling you do not have control over your life 50 43–57 50 45–55
No longer feeling like who you were 49 42–56 41 36–46
Feeling life no longer has meaning or purpose 40 33–46 45 40–50
Thinking how life might end
d
36 29–43 15 12–19
Uncertainty regarding illness
d
34 28–41 13 9–16
Not feeling you made a meaningful or lasting contribution
d
30 24–37 19 14–23
Not having a meaningful spiritual life 20 14–25 21 17–25
a
Respondents were asked to name the three aspects most problematic in practice.
b
Between 43 and 62 missing observations per aspect.
c
Between 37 and 51 missing observations per aspect.
d
Significant difference between volunteers and SCEN physicians.
4 ALBERS ET AL.

Table 3. Top 10 Items of Influence on and Problematic for Sense of Dignity of Terminally ill Patients According to Volunteers and SCEN Physicians
Volunteers SCEN physicians
Rank
a
Of influence Problematic in practice Of influence Problematic in practice
1.1.4.5. Feeling a burden to others [So]
b
Feeling a burden to others [So] Not being able to independently
manage bodily functions [Ph]
Experiencing distressing symptoms [Ph]
2.2.1.2. Not being able to independently
manage bodily functions [Ph]
Not being able to independently
manage bodily functions [Ph]
Feeling you do not have control
over your life [Ex]
Not being able to independently
manage bodily functions [Ph]
3.8.2.4. Feeling you do not have control
over your life [Ex]
Feeling your privacy has been
reduced [So]
Not being able to think clearly [Ps] Not being able to think clearly [Ps]
4.6.7.10. Not feeling worthwhile or
valued [Ex]
Not being treated with respect
or understanding [So]
Feeling a burden on others [So] Feeling you do not have control over
your life [Ex]
5.7.-.9. Not being able to accept things
the way they are [Ps]
Not being able to think clearly [Ps] No longer feeling like who
you were [Ex]
Feeling a burden to others [So]
6.4.-.-. Not being treated with respect
or understanding [So]
Not feeling worthwhile or
valued [Ex]
Experiencing distressing
symptoms [Ph]
Feeling life no longer has meaning or
purpose [Ex]
7.3.8.8. Feeling your privacy has been
reduced [So]
Not being able to accept things
the way they are [Ps]
Not feeling worthwhile or
valued [Ex]
No longer feeling like who you were [Ex]
8.5.3.3. Not being able to think
clearly [Ps]
Feeling you do not have control
over your life [Ex]
Feeling your privacy has been
reduced [So]
Feeling your privacy has been reduced [So]
9.-.9.6. Feeling life no longer has
meaning or purpose [Ex]
No longer feeling like who
you were [Ex]
Feeling life no longer has
meaning or purpose [Ex]
Not being able to accept things the
way they are [Ps]
10.-.-.-. Changes in physical
appearance [Ph]
Feeling depressed or anxious [Ps] Not being able to mentally fight [Ps] Not feeling worthwhile or valued [Ex]
a
These numbers indicate the rankings of the first item in every row. For example, ‘feeling a burden to others’ (rankings: 1.1.4.5.) has been considered most often of influence as well as problematic by
volunteers, and SCEN physicians considered this item the fourth most frequently influential in dignity and the fifth most frequently problematic in maintaining dignity in practice.
b
The abbreviation between the square brackets refers to the domain that includes the item: [Ph] physical domain, [Ps] psychological domain, [So] social domain, [Ex] existential domain.
5

Citations
More filters
Journal ArticleDOI
25 Jan 2016-PLOS ONE
TL;DR: Knowing the intricacies of distress and how they differ across these groups broadens the understanding of end-of-life experience within non-cancer populations and how best to meet their palliative care needs.
Abstract: Objective The purpose of this study was to identify four non-cancer populations that might benefit from a palliative approach; and describe and compare the prevalence and patterns of dignity related distress across these diverse clinical populations. Design A prospective, multi-site approach was used. Setting Outpatient clinics, inpatient facilities or personal care homes, located in Winnipeg, Manitoba and Edmonton, Alberta, Canada. Participants Patients with advanced Amyotrophic Lateral Sclerosis (ALS), Chronic Obstructive Pulmonary Disease (COPD), End Stage Renal Disease (ESRD); and the institutionalized alert frail elderly. Main Outcome Measure In addition to standardized measures of physical, psychological and spiritual aspects of patient experience, the Patient Dignity Inventory (PDI). Results Between February 2009 and December 2012, 404 participants were recruited (ALS, 101; COPD, 100; ESRD, 101; and frail elderly, 102). Depending on group designation, 35% to 58% died within one year of taking part in the study. While moderate to severe loss of sense of dignity did not differ significantly across the four study populations (4–11%), the number of PDI items reported as problematic was significantly different i.e. ALS 6.2 (5.2), COPD 5.6 (5.9), frail elderly 3.0 (4.4) and ESRD 2.3 (3.9) [p < .0001]. Each of the study populations also revealed unique and distinct patterns of physical, psychological and existential distress. Conclusion People with ALS, COPD, ESRD and the frail elderly face unique challenges as they move towards the end of life. Knowing the intricacies of distress and how they differ across these groups broadens our understanding of end-of-life experience within non-cancer populations and how best to meet their palliative care needs.

69 citations

Journal ArticleDOI
TL;DR: Tailoring dignity-conserving care to an individual nursing home resident appears hard to bring about in daily practice, and both attention to solve contextual barriers within the nursing home as well as more awareness of staff members for their own values, which they take as a reference point in treating residents, is needed to promote personal dignity in the Nursing home setting.
Abstract: Maintaining dignity is an important element of end-of-life care and also of the care given in nursing homes. Factors influencing personal dignity have been studied from both nursing home residents’ and staff’s perspective. Little is however known about the way nursing home staff perceive and promote the personal dignity of individual residents in daily practice, or about staff’s experiences with preserving dignity within the nursing home. The aim of this study is to gain more insight in this. A qualitative descriptive interview study was designed, in which in-depth interviews were performed with 13 physicians and 15 nurses. They expressed their views on the personal dignity of 30 recently admitted nursing home residents on the general medical wards of four nursing homes in The Netherlands. Interviews were transcribed and analyzed following the principles of thematic analysis. According to both physicians and nurses, physical impairment and being dependent on others threatened the residents’ dignity. Whether or not this led to a violation of an individual resident’s dignity, depended - in staff’s opinion - on the resident’s ability to show resilience and to keep his/her individuality. Staff mentioned treating residents with respect and taking care of their privacy as most important elements of dignity-conserving care and strived to treat the residents as they would like to be treated themselves. They could often mention aspects that were important for a particular resident’s dignity. But, when asked what they could contribute to a particular resident’s dignity, they often mentioned general aspects of dignity-conserving care, which could apply to most nursing home residents. By attempting to give dignity-conserving care, physicians and nurses often experienced conflicting values in daily care and barriers caused by the lack of resources. Tailoring dignity-conserving care to an individual nursing home resident appears hard to bring about in daily practice. Both attention to solve contextual barriers within the nursing home as well as more awareness of staff members for their own values, which they take as a reference point in treating residents, is needed to promote personal dignity in the nursing home setting.

41 citations


Additional excerpts

  • ...Earlier research in other contexts showed that physicians mainly focussed on physical aspects of suffering and less on psychosocial aspects [23,24]....

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Journal ArticleDOI
TL;DR: The study confirmed that the PDI-IT is a valid instrument to be applied in oncology and measuring three factors, namely existential, psychological, and physical distress, as core dimensions of dignity, to be monitored and treated in clinical settings.

34 citations

01 Jan 2009
TL;DR: These findings add to the understanding of the concerns of older people in care homes on maintaining dignity and suggest that dignity therapy may bolster their sense of dignity.
Abstract: Sue Hall, Susan Longhurst and Irene HigginsonKing's College London, Department of Palliative Care, Policy and Rehabilitation, London, UKAddress correspondence to: S. Hall. Tel: (+44) 207848 5578; Fax: (+44) 207848 5517. Email: sue.hall@kcl.ac.ukBackground: most older people living in nursing homes die there. An empirically based model of dignity has been developed, which forms the basis of a brief psychotherapy to help promote dignity and reduce distress at the end of life.Objective: to explore the generalisability of the dignity model to older people in nursing homes.Methods: qualitative interviews were used to explore views on maintaining dignity of 18 residents of nursing homes. A qualitative descriptive approach was used. The analysis was both deductive (arising from the dignity model) and inductive (arising from participants' views).Results: the main categories of the dignity model were broadly supported: illness-related concerns, social aspects of the illness experience and dignity conserving repertoire. However, subthemes relating to death were not supported and two new themes emerged. Some residents saw their symptoms and loss of function as due to old age rather than illness. Although residents did not appear to experience distress due to thoughts of impending death, they were distressed by the multiple losses they had experienced.Conclusions: these findings add to our understanding of the concerns of older people in care homes on maintaining dignity and suggest that dignity therapy may bolster their sense of dignity. Keywords: aged, nursing homes, qualitative research, dignity, elderly

34 citations

Journal ArticleDOI
TL;DR: The paper will discuss the main psychosocial and existential burden related to chronic and advanced medical illnesses, and the diagnostic and therapeutic implications for a dignity preserving care within a person-centred approach in medicine.
Abstract: The psychiatric, psychosocial, and existential/spiritual pain determined by chronic medical disorders, especially if in advanced stages, have been repeatedly underlined. The right to approach patients as persons, rather than symptoms of organs to be repaired, has also been reported, from Paul Tournier to Karl Jaspers, in opposition and contrast with the technically-enhanced evidence-based domain of sciences that have reduced the patients to 'objects' and weakened the physician's identity deprived of its ethical value of meeting, listening, and treating subjects. The paper will discuss the main psychosocial and existential burden related to chronic and advanced medical illnesses, and the diagnostic and therapeutic implications for a dignity preserving care within a person-centred approach in medicine, examined in terms of care of the person (of the person's whole health), for the person (for the fulfilment of the person's health aspirations), by the person (with physicians extending themselves as total human beings), and with the person (working respectfully with the medically ill person).

30 citations

References
More filters
Journal ArticleDOI
15 Nov 2000-JAMA
TL;DR: Although pain and symptom management, communication with one's physician, preparation for death, and the opportunity to achieve a sense of completion are important to most, other factors important to quality at the end of life differ by role and by individual.
Abstract: ContextA clear understanding of what patients, families, and health care practitioners view as important at the end of life is integral to the success of improving care of dying patients. Empirical evidence defining such factors, however, is lacking.ObjectiveTo determine the factors considered important at the end of life by patients, their families, physicians, and other care providers.Design and SettingCross-sectional, stratified random national survey conducted in March-August 1999.ParticipantsSeriously ill patients (n = 340), recently bereaved family (n = 332), physicians (n = 361), and other care providers (nurses, social workers, chaplains, and hospice volunteers; n = 429).Main Outcome MeasuresImportance of 44 attributes of quality at the end of life (5-point scale) and rankings of 9 major attributes, compared in the 4 groups.ResultsTwenty-six items consistently were rated as being important (>70% responding that item is important) across all 4 groups, including pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences, and being treated as a "whole person." Eight items received strong importance ratings from patients but less from physicians (P<.001), including being mentally aware, having funeral arrangements planned, not being a burden, helping others, and coming to peace with God. Ten items had broad variation within as well as among the 4 groups, including decisions about life-sustaining treatments, dying at home, and talking about the meaning of death. Participants ranked freedom from pain most important and dying at home least important among 9 major attributes.ConclusionsAlthough pain and symptom management, communication with one's physician, preparation for death, and the opportunity to achieve a sense of completion are important to most, other factors important to quality at the end of life differ by role and by individual. Efforts to evaluate and improve patients' and families' experiences at the end of life must account for diverse perceptions of quality.

2,303 citations

Journal ArticleDOI
TL;DR: Dignity therapy shows promise as a novel therapeutic intervention for suffering and distress at the end of life.
Abstract: Purpose This study examined a novel intervention, dignity therapy, designed to address psychosocial and existential distress among terminally ill patients. Dignity therapy invites patients to discuss issues that matter most or that they would most want remembered. Sessions are transcribed and edited, with a returned final version that they can bequeath to a friend or family member. The objective of this study was to establish the feasibility of dignity therapy and determine its impact on various measures of psychosocial and existential distress. Patients and Methods Terminally ill inpatients and those receiving home-based palliative care services in Winnipeg, Canada, and Perth, Australia, were asked to complete pre- and postintervention measures of sense of dignity, depression, suffering, and hopelessness; sense of purpose, sense of meaning, desire for death, will to live, and suicidality; and a postintervention satisfaction survey. Results Ninety-one percent of participants reported being satisfied with ...

772 citations

Journal ArticleDOI
TL;DR: To determine how dying patients understand and define the term dignity, in order to develop a model of dignity in the terminally ill, a semi-structured interview was designed to explore how patients cope with their advanced cancer and to detail their perceptions of dignity.

593 citations


"Personal Dignity in the Terminally ..." refers background in this paper

  • ...Chochinov and colleagues performed a qualitative study focusing on how dying cancer patients understand and define dignity, and developed an empirical model of dignity to understand how patients face an advancing terminal illness.(17) From the themes and subthemes of this model, a list of 22 items concerning symptoms and experiences that influence the sense of dignity of terminally ill patients was developed....

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Journal ArticleDOI
TL;DR: A substantial proportion of physicians in the United States report that they receive requests for physician-assisted suicide and euthanasia, and about 7 percent of those who responded to the survey have complied with such requests at least once.
Abstract: Background Although there have been many studies of physician-assisted suicide and euthanasia in the United States, national data are lacking. Methods In 1996, we mailed questionnaires to a stratified probability sample of 3102 physicians in the 10 specialties in which doctors are most likely to receive requests from patients for assistance with suicide or euthanasia. We weighted the results to obtain nationally representative data. Results We received 1902 completed questionnaires (response rate, 61 percent). Eleven percent of the physicians said that under current legal constraints, there were circumstances in which they would be willing to hasten a patient's death by prescribing medication, and 7 percent said that they would provide a lethal injection; 36 percent and 24 percent, respectively, said that they would do so if it were legal. Since entering practice, 18.3 percent of the physicians (unweighted number, 320) reported having received a request from a patient for assistance with suicide and 11.1 ...

446 citations

Journal ArticleDOI
TL;DR: The Patient Dignity Inventory is a valid and reliable new instrument, which could assist clinicians to routinely detect end-of-life dignity-related distress, and should help clinicians deliver quality, dignity-conserving end- of-life care.

310 citations


"Personal Dignity in the Terminally ..." refers methods in this paper

  • ...This study was based on the PDI prototype described in the introduction, including 22 items covering the following domains: physical, psychosocial, social, and existential.(19) The extent to which the respondents thought that the items have influence on maintaining patients’ personal dignity in the last phase of life was rated on a five-point scale (1 = not at all; 2 = slightly; 3 = somewhat; 4 = to a large extent; 5 = to a very large extent)....

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  • ...These 22 items formed the PDI prototype which was later revised into the 25-item Patient Dignity Inventory (PDI).(19) Although it is important to understand how patients understand dignity at the end of life, terminally ill patients are often not able to communicate anymore about their preferences for end-of-life care and what...

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Frequently Asked Questions (1)
Q1. What are the contributions mentioned in the paper "Personal dignity in the terminally ill from the perspective of caregivers: a survey among trained volunteers and physicians" ?

The study objective was to investigate and compare the views of trained volunteers and SCEN physicians on maintaining dignity for patients reaching the end of life. The study is a survey questionnaire study. These findings suggest that the role and responsibilities of caregivers involved in care for terminally ill patients affect the factors that they think influence dignity.