Scandinavian Journal of Occupational Therapy

ISSN: 1103-8128 (Print) 1651-2014 (Online) Journal homepage: http://www.tandfonline.com/loi/iocc20

What is important to patients in palliative care? a

scoping review of the patient’s perspective

Helen von Post & Petra Wagman

To cite this article: Helen von Post & Petra Wagman (2017): What is important to patients in
palliative care? a scoping review of the patient’s perspective, Scandinavian Journal of Occupational
Therapy, DOI: 10.1080/11038128.2017.1378715

To link to this article: http://dx.doi.org/10.1080/11038128.2017.1378715

Published online: 22 Sep 2017.

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 SCANDINAVIAN JOURNAL OF OCCUPATIONAL THERAPY, 2017
https://doi.org/10.1080/11038128.2017.1378715

REVIEW ARTICLE

What is important to patients in palliative care? a scoping review of the

patient’s perspective
Helen von Posta and Petra Wagmanb
a
Advanced Palliative Home Care, Region Skåne, Helsingborg, Sweden; bSchool of Health and Welfare, J€
onk€
oping University, Sweden

ABSTRACT ARTICLE HISTORY

Background: The research conducted in palliative care is often medically oriented. There are Received 2 November 2016
few studies clarifying the patient’s preferences, priorities and desires in palliative care. The occu- Revised 19 June 2017
pational therapy research conducted mostly concerns occupational therapy interventions based Accepted 7 September 2017
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on the profession’s experiences. Further knowledge is needed regarding what patients in pallia-
tive care want to prioritize. KEYWORDS
Aim: The aim was to describe what patients in palliative care describe as important at the end Activity; everyday life;
of life. occupation; occupational
Methods: A scoping review was conducted using the inclusion criteria: articles published in therapy; participation;
2004-August 2015; written in English; participants >18 years with life-threatening illness without person centered
possible cure; focusing on the patient’s experience.
Results: Seventeen articles were included in the review and they were based on interviews.
The theme ‘Continuing occupational participation is important for people at the end of life’ was
identified. This included five sub-themes: maintaining previous occupational patterns; feeling
needed; being involved in the social environment; leaving a legacy; and living as long as
you live.
Conclusions: The results show that continued occupational participation is important for people
in palliative care. Occupational therapists can contribute to this by taking a highly person-
centered approach and gaining information about what matters most for their clients.

Introduction therapists are required in the palliative team [6–8] as

Globally, it is estimated that about 20 million people
require palliative care at the end of life but only about
14% of them receive it [1]. Even in a rich country such
as Sweden, the number of people in need of palliative
care is higher than the number who receive it [2].
However, by ensuring that the physical, psychosocial
and spiritual dimensions are included, palliative care is
an approach that improves the quality of life of
patients and their families, facing the problem
associated with life-threatening illness, through a team-
based approach [3]. Palliative care implies taking a hol-
istic view of the dying person and his or her situation,
working from four cornerstones: symptom control;
multi-professional teams; communication
and relationships; and support for relatives [4].
Cooperation in multi-professional teams is central [2].
In Sweden, specialized units in palliative care have
been started, and occupational therapists are included
in many, but not all, of them [5]. However, according
to occupational therapy associations, occupational
they play an integral role in facilitating peoples’ oppor-
tunities to live a valuable life in accordance with their
wishes, needs and demands from the environment [7].
Palliative care is also a new area of research, and
the research conducted so far has largely had a med-
ical focus. The lack of research illustrating the prefer-
ences, priorities and wishes of patients approaching
the end of life has also been highlighted [9]. There is
also a scarcity of instruments adapted for palliative
patients, although the fact that ‘no instrument can
replace the partnerships that are necessary to identify
patient goals’ has been recognized [10, p 828]. Studies
based on peoples’ perceptions have increased within
cancer research, but palliative care is an exception.
The availability and willingness of these patients is
especially demanding in palliative care due to their
frailness and vulnerability at the end of life, and it is
difficult to gather participants to include in studies.
Not wanting to burden dying people or to risk caus-
ing them stress are some of the reasons why research
is often carried out on staff or relatives instead, e.g.

CONTACT Helen von Post helenvonpost@gmail.com Advanced Palliative Home Care, Region Skåne, Skånevård Kryh, Patronens v€ag 65B, 252 50
Helsingborg, Sweden
ß 2017 Informa UK Limited, trading as Taylor & Francis Group
 2 H. VON POST AND P. WAGMAN
[11]. However, their experiences may not be the same
as those of the palliative patient [12,13]. Few studies
in palliative care have focused on the patients’ experi-
ences. One exception is Black [9], who conducted a
critical review of patients’ priorities. He identified
four themes of importance: ‘understanding and
acceptance‘; ‘holding on to normality‘; ‘family, friend-
ships, and responsibilities’ and; ‘health-care support
and professional relationships’. However, this review
only identified four articles for inclusion [9]. Taken
together, there is lack of sufficient knowledge regard-
ing what patients in palliative care want to prioritize.
This also affects occupational therapists.
Occupational therapists have the knowledge and
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competence to help people to participate in self-chosen
occupations in relation to the limitations caused by
their disease [14]. Further knowledge is needed on the
best ways of doing this in palliative care, because so far
studies have only been conducted about patients’ per-
ceptions of their current interventions, e.g. Keeley [15],
but no study has been identified concerning what kind
of interventions they want. Currently, occupational
therapy interventions in palliative care often focus on
compensations. This implies adaptations of the local
environment such as the use of assistive devices in
order to enable continued performance in different
activities of daily living (ADL) [16,17]. Assistive devi-
ces may aim to reduce the energy or time it takes to
conduct, for instance, personal activities in daily life
[17], but there is insufficient knowledge regarding
whether this is the kind of intervention preferred by
the patients themselves.
The aim of this literature review was therefore to
describe what patients in palliative care at the end of
life describe as important.
Method
This study was conducted using the scoping review
method which is considered appropriate in order to
investigate a research area and gives a good point of
departure for further research. Conducting a scoping
study is based on different phases: identify the research
question and relevant studies to include; ‘charting the
data‘; and finally, making a summary and report [18].
The process for identifying relevant scientific articles
was based on the following inclusion criteria:

Published during 2004 to August 2015

In English

Includes participants older than 18 years with a
life-threatening disease without the possibility of
being cured

Focusing on the patient’s experiences
The exclusion criterion was reviews of published
literature. The following databases were used:
Academic Search Elite, Amed, Cinahl, Medline and
PubMed. The articles was identified using the follow-
ing search terms: Palliative care AND Patient perspec-
tive; End of life AND Patient perspective; Terminally
ill AND Patient perspective; Dying person AND
Patient perspective; End of life AND Activities;
Terminally ill AND Activities of daily living; End of
life AND Activities of daily living; Dying person AND
Activities of daily living. The searches were conducted
between April 4, 2014 and August 30, 2015.
The decision on whether an article should be
included involved several steps: first by reading the
titles, then abstracts, and finally the full article. The
reference lists and citations of included articles were
also used. The process resulted in 35 full articles, of
which 17 met the criteria and were included in the
review (Figure 1). The overview of all included articles
are presented in Table 1.
Result
Characteristics of the studies included
The articles included are qualitative studies based on
open-ended interviews. Individual interviews were
conducted in all but one article, which used focus
group interviews [19]. Most interviews were conducted
face to face in the participant’s home or in a care set-
ting. They had the purpose of letting the person/
patient speak freely based upon an given topic or a
few open questions. The number of participants varied
between 3 and 47 and they were 27 to 89 years old.
Most of the articles described participants and envi-
ronments in Western societies (Canada, the
Netherlands, Scandinavia and the US), while two were
from Hong Kong and Africa. In the majority of the
articles, the participants were diagnosed with cancer
but in two, the general terms ‘incurable illness’ or
‘terminal illness’ were used. In two studies, participants
with HIV, AIDS, cerebrovascular disease and different
rheumatoid conditions were also included [20–22].
Continuing occupational participation is important
for people at the end of life
The articles’ results could be gathered under the
theme ‘Continuing occupational participation is
important for people at the end of life’. The theme
included five sub-themes described below: maintain-
ing previous occupational patterns; feeling needed;
being involved in the social environment; leaving a
legacy; and living as long as you live.

1146 hits in Amed, Cinahl,
Academic Search Elite and
Medline
1486 hits in Pubmed
Reading the 26 abstracts
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Reading the 35 full articles.
= 17 articles included
Figure 1. The process of data gathering.
The results show that occupation is included in
what people in palliative care describe as being
important. All the included articles described occupa-
tions, but many of them talked about them generally
and did not mention any specific occupation. The
participants described the importance of being able to
perform some kind of occupation. For instance, when
they were no longer able to work, it was important to
be engaged in some other challenging occupation
[23]. However, being active did not imply the neces-
sity of being physically active. Current technology and
social media could be used as other ways to be active,
e.g. to continue religious practice via the Internet or
television [22]. Being able to do the things they
wanted was also shown to be of great importance for
self-esteem [21,24]. Also, planning occupations
became a part of this and was just as important as
performing occupations [25].
Furthermore, not being able to participate in every-
day life may imply suffering, and the participants
described that a feeling of hope and participation
resulted from easing their suffering through some
SCANDINAVIAN JOURNAL OF OCCUPATIONAL THERAPY 3
Reading the titles, resulting
in 49 articles (23 duplicates)
Searches in their reference
lists and via citations in
Google scholar resulted in 9
more abstracts
Of these, 17 meet the
criteria
form of occupation [26]. In many ways, these were
the same as for healthy people – going to a cafe, gar-
dening or cooking with the family – but in the light
of imminent death, these occupations had a different
meaning and resulted in a different feeling [26]. To
see what is important in life, to see beyond trivial
matters and unimportant things [23].
Maintaining previous occupational patterns
In six articles [19,20,26–29], the importance of being
able to do the things one has previously been able to
do was emphasized as being crucial for experiencing a
good quality of life. However, the participants did not
always specify what was included in the previous
occupational pattern. Occupations mentioned
included household chores, participating in meals and
traveling by car with others [19,20,27], and thereby
feeling to be a part of everyday life [26]. In the study
by van Rensburg et al. [20], one part of continuing a
previous occupational pattern included being able to
work and contribute to one’s livelihood. The results
 4 H. VON POST AND P. WAGMAN

Table 1. The articles included.

First author, Year, What is described as important by patients
Country Aim Method, Participants in palliative care.
Carter, 2004, To explore what people living with terminal An exploratory study To take responsibility and play an active
New Zealand illness considered were the areas of pri- 3 men role for control.
ority in their lives. 7 women To maintain to do what one has been doing
Two <50 years and eight previously.
61–77 years
Volker, 2004, US To explore the nature of what people with Interpretive interaction- To be with one’s family and close by.
advanced cancer want regarding personal ism To maintain caring for oneself and keep
control and comfort at the end of life. 1 man one’s dignity.
6 women Being able to help others in the same situ-
46-76 years ation to have something to do and to do
something good.
Coyle, 2006, US To examine, from the patient’s perspective, Interpretive phenomen- To find themselves in the disease and main-
the work of trying to live with advanced ology tain control of the situation.
cancer at the same time facing the 4 men To not solely be a patient.
immediacy of death. 3 women To create a legacy, a continued existence.
40–79 years
Goldsteen, 2006, To offer insight in how terminally ill A hermeneutic approach To actively deal with their situation i.e. con-
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The Netherlands patients define their dying trajectory and 10 men tinuing to be active despite the disease.
how they use current normative ideas 3 women Preparing themselves and others for their
and expectations about dying in their 39–83 years forthcoming death.
stories.
Melin-Johansson, 2006, To describe patients’ perceptions of quality Content analysis Being able to conduct the activities of
Sweden of life in incurable cancer at the end of 2 men everyday life, domestic chores.
life. 3 women Participating in driving tours with family
54–76 years and friends. Living as fully as possible
and making the best of every day.
Melin-Johansson, 2008, To elucidate the meaning of quality of life Qualitative study To have hope. Being at home in a well-
Sweden as narrated by patients with incurable 6 men known environment and close to their
cancer approaching death in palliative 2 women family.
home care. 35–83 years
Prince-Paul, 2008, US To advance understanding of the social Phenomenology Participating socially gives life meaning.
wellbeing domain, a dimension of quality 3 men Continuing to be involved and to live while
of life, from the perspective of dying 5 women dying.
individuals 35–75 years Being close to those who are close to them.
Wrubel, 2009, US To explore how people with a terminal ill- Qualitative methodology Being active in everyday life, does not have
ness live out their lives. 32 participants to be physically – can be via, for
27–73 years instance, television or the Internet.
To live as long as one lives.
La Cour, 2009, Denmark To explore and understand how people Qualitative interviews To do meaningful activities together with
with advanced cancer create meaning and observations the family which simultaneously creates
and handle everyday life through activity. 2 men good memories.
5 women Being 'healthy' despite severe disease.
39–67 years Maintaining previous activities although
modified.
Gourdji, 2009, Canada To explore the meaning of quality of life Qualitative study Doing things I usually do.
from the perspective of terminally ill 5 men Being helpful to other people.
patient on a palliative care unit and to 5 women Living in a caring environment.
identify the factors in their environment 29–79 years Participating as a spectator when you can
that brought quality to their lives. no longer practise.
Mok, 2010, Hong Kong To examine the meaning of hope from the Qualitative content Living a normal life, experiencing social sup-
perspective of Chinese advanced cancer analysis port.
patients in Hong Kong. 9 men Being able to participate in everyday life.
8 women Exemplifying different activities such as
49–84 years. mahjong, fishing, eating, walking.
Andersson Sviden, 2010, To investigate how people with cancer Grounded theory Maintain as normal a life as possible.
Sweden receiving palliative care engage in and 8 men The importance of continuing to do some-
undertake activities in their everyday 39 women thing rather than doing nothing.
lives. <49 to between 70–89 Be able to participate in activities with
years friends and family.
Be able to perform activities that contribute
to well-being and being able to engage
in everyday life.
Experiencing joy and pleasure provided a
feeling of being capable and alive, which
helped them to continue to engage in
activities and participate in everyday life.
(continued)
 SCANDINAVIAN JOURNAL OF OCCUPATIONAL THERAPY 5

Table 1. Continued
First author, Year, What is described as important by patients
Country Aim Method, Participants in palliative care.
Carlander, 2011, Sweden To describe how people close to death nar- A narrative approach To be able to continue to do everyday
rate themselves in relation to everyday 1 man activities.
life and, thus, gain more knowledge 2 women To remain the same as before the disease.
about aspects of identity close to death. 46 and 50 years To be able to help others.
Social relationships.
Participating in household chores, as this
gave a feeling of being useful.
Planning small activities and carrying them
out.
Making it easier for the family to support
each other; taking a step back but con-
tinuing to participate.
To leave stability and things in order.
Lavoie, 2011, Canada To describe the experience of autonomy Phenomenological Maintaining their identity all the way.
from the viewpoint of the palliative care approach Being able to do what they want; socializ-
patient. 3 men ing with friends.
7 women Being sufficiently independent in daily activ-
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45–79 years ities.

Being able to decide and maintaining one’s
identity.
La Cour, 2012, Denmark To illuminate how persons with advanced 2 men Being able to help those close by.
cancer reflect upon and use engagement 5 women Feeling needed, useful and a part of every-
in ordinary daily activities when facing 39–67 years day life.
impending death. To make every day valuable.
Maintaining activities despite severe
symptoms.
Nissim, 2012, Canada To provide an understanding of the overall Grounded theory To control the dying.
prolonged experience of advanced cancer 12 men Valuing current life.
and how this experience is managed, as 15 women Creating a living legacy.
seen through the eyes of dying individu- 45–82 years Being able to help others.
als themselves. Actively controlling and trying to prolong
the period of living meaningfully with
treatment.
van Rensburg, 2013, To explore quality of life from the perspec- Qualitative phenomeno- To support oneself and one’s family.
South Africa tive of palliative care patients managed logical design Having friends around and support from
at a palliative care clinic serving a 2 men one’s religion.
resource-poor community in Tshwane, 8 women Having employment.
South Africa. 30–79 years Being needed and caring for close ones.

in two of the other articles emphasized the import-
ance of being able to conduct the personal ADL inde-
pendently [21,27]. According to Goldsteen et al. [28],
it was also considered important to take responsibility
for maintaining active participation in life and to
strive towards normality [23].
When the disease affected the ability to perform
previous occupations, it became important to be able
to perform at least a part of them [23,26]. The patients
dealt actively with their situation by continuing to be
active and moving on in life despite a severe disease
[30]. This could mean continuing to participate in
social events, socializing with friends [21,31] and mak-
ing choices based on their own priorities [25,29].
Feeling needed
In six of the articles [20,24–26,28,29], the results
showed that being able to contribute to others was
important for the participants’ quality of life. The
value of feeling that one has something to offer to
others and being needed was recognized [24–26,29]. It
was also described that by helping others they also
helped themselves [29].
It was also considered important to have the oppor-
tunity to feel needed by contributing to others in the
same situation or by helping those close by
[20,24,25,28,29,32]. Feeling needed could also mean
preparing oneself and others for one’s coming death,
e.g. by preparing the funeral, getting one’s finances in
order and dealing with other practical issues [28]. This
was done in order to make it easier for the family to
support each other and to leave stability and things in
order [25]. Moreover, several participants in the study
by Nissim et al. [24] chose to begin volunteer work
after receiving their diagnosis, based on the desire to
contribute to society and to other people.
Being involved in the social environment
The importance of the patient’s surrounding environ-
ment was highlighted in eight articles [20,23,25,27,
29,31–33]. This concerns the physical environment,
such as having a home environment that enables the
 6 H. VON POST AND P. WAGMAN
person to stay at home during the last stages of life
[33]. However, the greatest emphasis was put on the
social environment, e.g. being able to participate
socially and continuing to be involved were described
as giving meaning to live [31,32]. Moreover, the
importance of having friends and family around was
recognized [20,23,25,27,29,31–33].
Leaving a legacy
Creating good memories and a legacy together with
the family was described as important [24,34,35].
Some patients were afraid of only being remembered
as ill. Creating a legacy was described as forming ‘a
bridge for the participants between existence and
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non-existence’, and was of great importance in the
process of accepting their current situation [35]. The
motivation behind leaving a legacy was not only gen-
erosity but also a wish for continued existence; to cre-
ate a picture for one’s survivors that justifies how they
have lived and what they have accomplished [24].
Living as long as you live
The last sub-theme identified deals with the import-
ance of feeling that one is living as fully as possible
and making the best of every day [19,20,26]. This
contributes to patients’ feeling of being present in
reality and in everyday life activities [23], which is
one aspect of living as long as you live. Another
aspect concerned deciding for themselves, e.g. actively
taking control and trying to prolong the period of
meaningful life with treatment [24]. It was also
described as important to be able to maintain their
own identity [21,25] by being the same as before to
those closest to them [26] and by finding themselves
in their disease and maintaining control of the situ-
ation and not solely being a patient, i.e. the import-
ance of being healthy despite the severe disease
[34,35]. Moreover, the importance of maintained con-
trol of life was described as an important part of qual-
ity of life; primarily taking an active role in
controlling the living together with the dying
[21,24,30,35]. This could concern the decision of what
meaning life should have close to death [31]. By con-
trolling the pain relief or the life-prolonging treatment
they also controlled the time left. Being able to do
what one wants also included the ability to think and
argue for oneself in the decision process [21,30,35].
Discussion
This scoping review aimed to describe what patients
in palliative care at the end of life describe as being
important. The results showed the importance of con-
tinued participation in life and its occupations, as
each sub-theme identified shows aspects that fall
within the area of participation.
The experience of participation is subjective and
arises from conducting personally meaningful occupa-
tions. This experience is affected by personal experi-
ences and individual abilities, habits, volition and
roles, as well as by an enabling or restricting context
[36]. Several of our included articles reported that
their participants emphasized the importance of truly
living as long as they do, implying being the same
person as before to those closest and maintaining con-
trol of the situation as well as life close to death.
These findings support the National Board of Health
and Welfare guidelines stating that autonomy, partici-
pation and the social network have, besides easing
symptoms, also been recognized as important aspects
for quality of life [2]. Our results are also similar to
those of Black’s review, based on four articles (of
which two are also included in the present review), in
which he identified the importance of having the abil-
ity to go on with one’s life even in the last stages and
of keeping elements of normality when dying [9].
Furthermore, our findings also show that people
also feel alive when experiencing participation and
being able to participate socially, and that having those
who are closest to them around contributes to a feeling
of participation. Another aspect of participation identi-
fied as being important in the present study was the
experience of being needed. To be able to make things
easier for and help those closest to one was identified
as contributing to a feeling of being needed, and this
has also been described in earlier research [13].
The importance of maintaining previous occupa-
tional patterns was highlighted in several articles in this
review [19,20,26–29]. These occupational patterns are
formed by our habits, our volition and our performance
capacity. People create space for themselves in the social
world by what they do, and in order to understand what
kinds of occupation an individual will choose, one
needs to understand the interaction between what he or
she wants to do and values doing, what he or she
believes he or she can do and finds meaningful, and the
possibilities and restrictions of the environment [36].
As a way of achieving this, occupational therapists could
be good contributors as they have the knowledge and
skill to enable people to participate in their self-chosen
occupations in relation to the limitations a disease
involves [37]. Loss of independency and roles may
result in a social death before the biological death.
Occupational therapy may enable patients to participate

in new and meaningful functions and roles, maintaining
self-esteem [38] and thereby contributing to continued
participation in everyday life.
The present results also show the importance of
occupational therapists conducting a thorough infor-
mation gathering process, preferably with the patient as
he or she is the only one who knows what is personally
valuable and can make the right prioritizations. In pal-
liative care, there is a risk of listening too much to rela-
tives due to not wanting to disturb the patient [39].
This implies that those occupational problems that the
relatives and the occupational therapist see are those
that are solved, and these may be more or less relevant
for the patient. For instance, it may not be considered
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important for a patient to be able to enter the bathroom
but instead very important to be able to enter the kit-
chen in order to participate and be involved in the
immediate social environment. Therefore, the occupa-
tional therapist needs to work in a highly person-cen-
tered manner in order to obtain information about
what matters most, i.e. getting an understanding of the
patients based on their values, interests, etc. This also
involves the occupational therapist understanding,
respecting and supporting the patient’s choices and
actions [36,40]. This is in line with Pearson et al., who
emphasize the importance of occupational therapists
listening and acting on what the patient values most
[16], as well as with the National Board of Health and
Welfare which emphasizes the absolute importance of
the health care system providing individually adapted
palliative care [2] and truly taking the patient’s perspec-
tive into account.
The results of the present study can contribute to
deeper insights for occupational therapists who meet
patients in palliative care or patients who are reaching
the end of their life: insights into the importance of rec-
ognizing and highlighting the healthy aspects of each
individual, and creating an understanding of the desire
to continue to live life to the fullest. The latter is a wish
that may cause resistance towards help and assistive
devices given to meet an urgent need recognized by the
occupational therapist. In palliative care work, one of
the challenges may be to balance professional interven-
tions with the patient’s sense of participation.
Methodological considerations
The aim of this scoping review was considered suit-
able for the method chosen, but the study has some
issues that need to be discussed. Firstly, it is based on
17 articles and this scarcity shows that further
research from the palliative patient’s perspective is
warranted, e.g. based on participation and continued
SCANDINAVIAN JOURNAL OF OCCUPATIONAL THERAPY 7
occupational pattern. However, it cannot be ruled out
that some relevant articles were missing from the
searches despite using several search terms. On the
other hand, this scarcity has been previously described
as being related to the fact that palliative care involves
working against time [39].
Moreover, one of the inclusion criteria was that it
should illuminate the patient’s perspective and this
means that studies solely including questionnaires
were excluded which need to be taken into consider-
ation when interpreting the results.
Conclusions
The present study aimed to describe what patients in
palliative care at the end of life describe as being
important. The results show that continued occupa-
tional participation is important for people at the end
of life and that they put great emphasis on being able
to continue their earlier occupational pattern and
life as much as possible. Occupational therapists can
contribute to enabling this by taking a truly person-
centered approach towards their clients.
Disclosure statement
The authors report no conflicts of interest.
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