What is a good death?

Terminally ill patients dealing with

normative expectations around death and dying
Minke Goldsteen
a,
*
, Rob Houtepen
b
, Ireen M. Proot
c
, Huda Huijer Abu-Saad
d
,
Cor Spreeuwenberg
e
, Guy Widdershoven
f
a
Department of Health Care Ethics and Philosophy, Maastricht University, P.O. Box 616, 6200 MD Maastricht, The Netherlands
b
Department of Health Care Ethics and Philosophy, UM, The Netherlands
c
Institute for Bioethics, UM, The Netherlands
d
School of Nursing, American University of Beirut, Lebanon
e
Department of Health Care Studies, UM, The Netherlands
f
Department of Health Care Ethics and Philosophy, UM, The Netherlands
Received 28 October 2005; received in revised form 31 March 2006; accepted 20 April 2006
Abstract
Objective: Developing good care for dying people is important nowadays. Normative expectations about what could be considered as a good
death are inextricably bound up with this issue. This article aims to offer an insight in the way terminally ill patients talk about death and dying
and how they refer to current western normative expectations about a good death.
Method: Thirteen patients with a life expectancy of less than 3 months living at home were interviewed about how they experienced the last
phase of their lives. The analysis focused on the way patients tell their personal stories by using normative expectations that are part of a
broader cultural western framework.
Results: Five categories of normative expectations were discriminated in the stories of patients: awareness and acceptance, open
communication, living ones life till the end, taking care of ones nal responsibilities and dealing adequately with emotions.
Conclusions: The results of this study show that in the search of a good death people show a clear diversity in their way of referring to as well
as in dealing with normative expectations that are part of the current cultural paradigm.
Practice implications: Professional caregivers should be responsive to how a patient deals with and relates to normative expectations about a
good death and should support patients in their individual process of dying an appropriate death.
# 2006 Elsevier Ireland Ltd. All rights reserved.
Keywords: Palliative care; Good death; Normative expectations
1. Introduction
Facing imminent death disrupts someones basic sense of
security about being in the world, especially when in the
prime of life. There is a loss of the destination and the map
that previously guided a persons life; taken-for-granted
skills and routines, ideals and plans are broken down.
Consequently peoples senses of identity are being shaken
and people are forced to redene themselves in terms of a
dying person. Seale [1] states that individuals construct their
identity by telling and retelling narratives about themselves.
These narratives are not only personal, but also social. Such
personal narratives can draw on cultural scripts offered
by systems of expertise, such as medicine, psychotherapy, or
religion. The scripts help the narrators to make sense of
events, relationships and their sense of self. Individuals who
wish to understand how to die well can draw on a number of
such scripts as materials with which to organize their
coherent personal story [1].
With regard to good death, authors on terminal
palliative care are remarkably consistent in describing the
www.elsevier.com/locate/pateducou
Patient Education and Counseling 64 (2006) 378386
* Corresponding author. Tel.: +31 43 3882458; fax: +31 43 3670932.
E-mail address: m.goldsteen@zw.unimaas.nl (M. Goldsteen).
0738-3991/$ see front matter # 2006 Elsevier Ireland Ltd. All rights reserved.
doi:10.1016/j.pec.2006.04.008
general features of an ideal dying trajectory: awareness,
autonomy, a self-chosen coping style and open and honest
communication. This can be seen as a cultural script that is
dominant in the international literature of western palliative
care. In this article we looked at developments in western
society and particularly in health care, that created and
inuenced current ideas and normative expectations around
death and dying in palliative care and we analysed the stories
of terminally ill patients how they deal with the current
normative framework.
2. Background
In the past decades there has been increasing attention for
death and dying. In a cultural debate in the seventies of the
20th century, the historian Aries presented an epochal
history of attitudes towards death and claimed that death was
actively pushed from public attention in modern times [2].
The sociologist Elias published an essay titled The
loneliness of dying people in our Age in which he argued
that western culture lacks adequate rituals concerning the
dying process [3]. Both authors considered dying as a
meaningful and social process. A focus on beliefs and
attitudes with respect to death and dying is also present in the
social sciences, in the qualitative research of Glaser and
Strauss on the awareness of death, the dying trajectory and
on how caregivers deal with issues related to the dying
process [46].
The issue of death was not open for discussion in health
care until 1970. It was an ofcial code of conduct for
physicians not to confront terminally ill patients openly with
their coming death but to give themhope on a serious chance
of recovery. Physicians believed that dashing someones
hope for recovery implied a too heavy burden of the
emotional life and therefore would lead to an unbearable end
[7]. In his book On dying and denying Weisman [8] opposes
this silence that surrounds the dying. He argues that ignoring
death and remaining silent might intensify fear. Instead,
caregivers and families should help patients to face death
with acceptance in a well-balanced and calm way.
At the same time a development becomes visible in
healthcare in which dying was seen as a condition that
requires special care and support. In England Cicely
Saunders was concerned about the fate of dying people
and laid the foundation of the modern hospice-movement
[9,10]. The American psychiatrist Kubler-Ross introduced a
model with different terminal phases, which should offer
more insight in the way terminal ill patients experience
death. In her psychological studies she emphasised the
importance of acceptance of death [11,12]. Both women
were active in the development of care for the dying.
These developments inuenced current normative ideas
in palliative care. An important ideological issue is the
thought that death should be meaningful for a patient and for
his beloved ones. Therefore it is seen as important that
someone is aware of coming death [13,14]. As Mak and
Clinton [15] note: Many health professionals have assumed
it is better to die in full awareness that one is dying, rather
than to die in a context in which impending death is not
openly acknowledged. Not only awareness of death, also
acceptance of death although hard to achieve is dened
as a central element of a good death. In popular books like
Dying well and Peaceful dying written by people who are
involved in the hospice-movement, death is pictured as
something to learn from; it is an experience that can give
emotional and spiritual growth [16,17].
Furthermore, it is argued that professionals should work
from the perspective of the patient. Preferences and needs of
dying patients are considered as a starting-point for the care
that is offered [18,19]. This requires empowerment of the
dying patient; for example by providing the patient with the
knowledge relevant to make important decisions [9,2022].
Another important normative idea in palliative care is that
death should not be a taboo in the communication. Instead of
avoiding telling a dying patient of his bad prognosis, as it
would be distressing and harmful, there is the duty nowadays
to inform a patient about his condition and his short life
expectancy [23]. Henceforth patients are able to prepare
themselves for their coming death and talk with others about
their dying.
3. Method
3.1. Aim
This article aims to offer insight in how terminally ill
patients dene their dying trajectory and how they use
current normative ideas and expectations about dying in
their stories. To explore this, we undertook a qualitative
study and interviewed terminally ill patients with a life
expectancy less than 3 months who lived at home. This study
is part of the larger-scale research: A good death. Palliative
care at home. Patients, family-members and professional
caregivers participated in this project [24]. Other articles
within this project focused on the needs of terminally ill
patients at home and on the vulnerability of family
caregivers in terminal palliative care at home [25,26].
3.2. Methodology
The study used a hermeneutic approach. Central idea of
hermeneutics is to understand practices from the viewpoint
of those who are involved. Hermeneutics focuses on the
perceptions and interpretations of people without dening
these beforehand by literature. However, hermeneutics
acknowledges that one cannot get direct access to peoples
views, without any preconceptions. Empirical material
always needs to be interpreted. In this process theory plays a
role. From a hermeneutic perspective, interpretation takes
the form of a circle between theory and data. Alvesson and
M. Goldsteen et al. / Patient Education and Counseling 64 (2006) 378386 379
Skoldberg [27] formulate this point as follows: It is thus not
so much that objective data talk to the theory (data are after
all constructions and dependent on perspective); rather the
theory allows the consideration of different meanings in
empirical material.
3.3. Participants
Terminally ill patients (N = 13), family caregivers
(N = 13), professional caregivers (N = 13) and bereaved
carers (N = 14) were interviewed about the experiences with
the patients coming death. The interviews with patients
were then used for this article. Inclusion criteria for patients
were: expected to die within 3 months, living at home, being
competent, and age more than 18 years. Exclusion criteria
were physical, psychosocial or other circumstances that
would hinder patients in participating in the study. The
interviews have been held in the period of October 1999 till
November 2000. Ten male and three female patients
participated in the study, ranging in age between 39 and
83 years (M = 64.6). All patients were Dutch, Roman
Catholic (ve patients actively professed their religion), and
resided in the province of Limburg in the south of the
Netherlands. Although it was not an inclusion-criterion, all
were patients with cancer diagnosis. For 70% of the patients
the time between interviewand death was less than 3 months
(M = 12.6 weeks, range = 136 weeks).
Written consent was obtained from the participants. They
were assured that all identifying data would be removed in
any published report stemming from this study. The ethics
committee of the Maastricht University Hospital approved
of the project.
3.4. Data collection and analysis
Interviews with experts and results of other studies [28]
were used to develop an open-ended interview guide.
Project-members and selected experts reviewed this guide.
The revised version was tested in a pilot study. Four trained
interviewers conducted the interviews. Patients were
interviewed in general terms about their experiences, health
problems, needs and the care they received from family
carers and providers. Interviews lasted from 20 to 120 min
(M = 67.3) and were tape-recorded (after consent) and
transcribed.
In line with the hermeneutical method, the process of
analysis was a back and forth between our theoretical
questions and ideas and the empirical material. Starting
point was the research question how terminally ill patients
talk about death and dying; what they think about a good
death. It appeared that patients told their personal stories by
referring to normative ideas and expectations that are part of
a broader cultural framework. Patients did this for example
by using expressions like I should . . . or I have to . . .
Normative ideas and expectations also became visible when
patients stated very clearly what they would like to do and
what they expected from themselves and others in this
situation. Five categories of normative expectations around
death and dying appeared to be prominent in the interview
material. It should be emphasised that these were not the
result of our questioning procedure; patients were not
questioned about specic normative expectations encoun-
tered in the literature (see Appendix A for interview guide).
In studying these normative expectations we became
intrigued by the active way patients related to them. We
explored in depth how patients articulated their beliefs and
behaviour with respect to these ve normative expectations
by focussing on different positions people could hold with
respect to a particular norm.
4. Results
4.1. Normative expectations around death and dying
Terminally ill patients appeared to refer to several
existing normative issues and expectations. The following
issues and expectations were prominent.
4.1.1. Awareness and acceptance
One of the most prominent normative ideas in palliative
care is the importance of being aware of ones imminent
death and also accepting this idea of dying. The terminally
ill patients in this study indeed frequently address this idea
of awareness and acceptance.
Some stress explicitly that one has to face the facts and
acknowledge death; one cannot escape from incurable
cancer and better realise and accept this instead of clutching
at straws like the advice of a natural healer. Instead sober-
mindedness and realism are needed in this situation:
I dont believe in the practices of natural healers and others.
[. . .] People wouldnt die if these kinds of things would work
. . . if you look at it in a down to earth way; you dont have to
be an intellectual, to see that a king as well as a
multimillionaire, dies of cancer. (p. 01)
A patient states that sober-mindedness is not a passive
attitude: one does not give in to death without struggling, but
sober-mindedness and realism enable one to accept that
ones life is going to end.
I have always been very down-to-earth and realistic. This is
not a matter of reconciling with everything without further
ado [. . .] At a certain moment you use your brains in a down-
to-earth way . . . And you have to conclude: We have not
been lucky. (p. 11)
Here acceptance of death is related to personal
characteristics; a sensible person is able to face the facts
and acknowledges the fate of imminent death.
However not everyone depicts himself as a sensible
person. Some patients seem to be determined to pursue any
course that might promise a cure. Although they are
M. Goldsteen et al. / Patient Education and Counseling 64 (2006) 378386 380
diagnosed as incurable and have been told about the
diagnosis, they actively resist the normative expectation to
accept their status as a (nearly) dying person.
I say: doctor, I take every straw. [. . .] I am far from the
terminal phase. (p. 05)
It is tempting to interpret such an attitude in psycholo-
gical terms as denial, an inability to cope adequately with the
available medical information. But this resistance could also
be interpreted as a matter of will rather than a matter of
failing cognition.
One woman emphasises that she always still sees a
loophole somewhere. She feels encouraged in her resistance
to death since she knows someone who lived beyond the
period that had been estimated by doctors. Her attitude is not
merely a matter of rating her chances of survival
optimistically but very explicitly an outright refusal to even
think of death, let alone deal with it:
I really throw that far away from me. [. . .] I dont want to
have anything to do with that. And I tell you, you throw it
away from you, you get rid of it . . .. but you dont, you dont
get rid of it. Youll never get rid of it, you only have one life
you know. (p. 02)
The confusion concerning the (in)-ability to get rid of the
idea of death indicates that resistance of to the normative
expectation is not self-evident or easy, but requires active
and deliberate work.
Hence awareness and acceptance of death are issues that
patients frequently address. Patients do this by stressing
sober-mindedness that is needed in the situation, by relating
acceptance to personal character and by showing more or
less active resistance against death.
4.1.2. Open communication
Patients often make statements about what they do or do
not want to talk about. Some emphasize the importance of
open communication within the family and the satisfaction
this provides.
It is a big advantage that we can speak with the children very
well about coming death, that we can arrange things together
and that we agree on all kind of things. I have to say that this
gives me a lot of satisfaction in this current phase. (p. 11)
This patient makes clear that he does not experience
communication as something forced upon him but as
something that delivers personal benet. Another patient
underlines this by expressing his need for open commu-
nication with people who listen and understand:
I have said a hundred times that I need help. Not physical
help, but psychological help. People you can talk to, to
whom you can say what you want to say, whom you can tell
everything. (p. 08)
Several patients and family members state that they do
speak about death and dying, but only to a certain extent.
They emphasise that communicating about death and dying
is not unlimited. Beyond this limit one cannot live ones life
anymore.
F[family member]: Once or twice we talk about death and
then it is all right. P[patient]: No, you cant talk about it all
the time. Then you wouldnt have a life anymore. (p. 05)
Other patients resist talking about death. They state that
they do communicate but not about death or their illness, at
least not with friends.
I do have friends who come now and then, to talk about
sports or other things. Not about the illness. [. . .] Because
those kind of people I dont like to have here. (p. 12)
Patients seem to have a varying attitude to discuss issues
around death and dying. For some talking about death is very
important; it brings satisfaction and rest. Others do not wish
to talk about death, or at least not too long, not too much, and
not with everyone. They rather talk about other things.
4.1.3. Living ones life till the end
Patients often use expressions like you have to go on
with your life as well as and as long as possible and I am
trying to do the things I used to do. This shows that patients
expect from themselves to stay active and involved in things,
even though they are in the nal phase of their lives. As
someone states:
I dont stay inside; I dont want to stay in bed. . .. And then I
go. [. . .] What I still have, I have. And for the rest, well see.
(p. 04)
Several patients underline the importance of this
expectation by contrasting their own behaviour explicitly
with that of terminally ill acquaintances who are not as
active as they are. To do the things they can still do and enjoy
is important for them.
A friend of mine too, he was also in this stage. . . he was ill
and laid in bed as if he was already death, he never came out
of his bed anymore. I hardly lay in bed during the day. [. . .] I
go out shing. (p. 08)
The normative expectation to deal actively with ones
situation is expressed in terms of staying active or trying to
go on with ones life, despite the illness.
4.1.4. Taking care of ones nal responsibilities
An issue that is frequently addressed by patients is taking
care of ones nal responsibilities. People explain the kind of
arrangements they have made and the way they have
prepared themselves and others for their coming death.
Patients mention different kinds of responsibilities. Some
responsibilities are directly linked to practical procedures
around the patients funeral, such as arrangements of music,
owers, death announcements and mortuary cards.
Others also describe the arrangements they made to
support the lives of the future bereaved. They imagine a
M. Goldsteen et al. / Patient Education and Counseling 64 (2006) 378386 381
future without their own involvement and try to inuence
this future by arranging a number of things for their family.
We have spoken about so many things. . . we have our own
home, have a very large garden and both avid gardeners;
nowshe [wife] has to do it all by herself. And it may sound a
bit strange but we have had time to discuss how to do the
chores. Some things have already been changed in the yard,
chores you knowthat take a lot of time to do by herself. It is
maybe a bit weird to say, to organize these materialistic
things now, but you worry about it. I dont think Imthe only
one who wants to leave everything behind as good as
possible. (p. 11)
A patient relates how she encourages her husband to
make new contacts and not to stay on his own. This is not so
much a means of directing her husbands life after her death;
rather it expresses her concern for his well-being, and
reassurance that there are no feelings about her husband
developing new relationships.
I say: Find someone else for a girlfriend. Then he says:
Oh I dont want a girlfriend anymore. I answer: The
neighbour has a girlfriend, to have coffee with. He is a
widower. That would be nice, wouldnt it? You dont have
to stay alone I said. Well yes, you are right again he
[husband] said. So thats how I talk with him. (p. 04)
The issue of taking care of ones nal responsibilities is
expressed in several ways. Patients refer to very practical
responsibilities but also feel responsible for the lives of their
family after their death.
4.1.5. Dealing adequately with emotions
Emotions play an important role in the terminal phase.
Patients might be overcome by their emotions when they
realise that death is near. They can be confronted with
feelings of anxiety, despair or fear to be left alone or to die in
pain. From a psychological perspective it is seen as
important to express these negative emotions and to share
them with others. Patients do refer to the way they deal with
their emotions. It appears that the ideas of patients about
dealing adequately with emotions might differ from the
opinions of their environment. For example this woman
experienced that others nd her to be callous:
They say: but you are so callous. For instance the previous
time I had cancer: . . . Yes but you are talking about it so
easily. I say: Yes, but that is maybealsomycharacter. (p. 04).
This woman refers to her character as justication for the
easy way she talks about dying. Somewhere else in her story
it becomes clear that it is also a more fundamental choice.
She expresses not to want to give way to sorrow and despair
because that might be a hindrance to enjoying the time left.
I do have a bad day sometimes, but then I would say: lets
make the best of it. I cannot lay in bed crying here for the
whole day. That isnt nice for themand not for myself. (p. 04)
Other patients describe their loneliness in their emotions.
One patient experienced that some people do not support
him in dealing with his emotions. He does not feel free to
express his feelings.
Many times I lay there crying alone. Others have to
understand this, but there are people who dont understand
this. They think: You are strong, you have to bear this. (p. 08)
With regard to the normative expectation of dealing
adequately with emotions it appears that people think
differently about what is adequate dealing.
4.2. Diversity in dealing with normative expectations
Referring to normative expectations does not mean that
patients always underline these expectations. Instead of
merely underlining, patients are actively dealing with
normative expectations by searching for the meaning of
expectations within the context of their own situation. This
sub-paragraph focuses on the different positions that can be
discerned in the way people do this.
Terminally ill patients take several positions towards
normative expectations that can vary from negative to
positive ways of dealing. There are patients who ercely
oppose against ideas like the thought of open communica-
tion. Their way of dealing with this expectation is: resisting.
Or someone might argue that something like accepting that
you are going to die is in itself an important issue, but not for
himself, at least not for the moment. Herewith they underline
a normative expectation but think this expectation is not yet
relevant to their own present situation. There are also
numerous interview scenes in which patients present
themselves as staunch supporters of a normative expecta-
tion. For example, one patient reconciles himself to his
coming death to such a degree that he internalises the
limitation of his life span completely. Approaching the
horizon of his life, he has lost his interest in the occurrences
and worries of everyday life that used to be the backbone of
conversations.
Now you relate everything to a story of. . . well, of the
situation you are in now. And if you consider that almost
your whole daily life and your goal. . . is focused at
something else than what you have now. [. . .] You notice
now that everything in the past was related to a situation
which is not like the situation now. Because everything thats
talked about or discussed is. . .well, it leaves me cold, it
doesnt engage me anymore. Thats all over for me,
meaningless. (p. 11)
On the other hand, another patient, who is also aware that
she is going to die, mainly focuses on the life she still has.
For her, being occupied completely with her coming death,
works as a self-fullling prophecy:
But I am not occupied with that constantly. In fact, I am
busier with things Id like to do. And sometimes I wonder if I
M. Goldsteen et al. / Patient Education and Counseling 64 (2006) 378386 382
still would be able to do that. . . But then I think: well have
to wait and see. Look, I am not very negative person whos
saying: O no, I wont make that anymore. Yes, I guess
youll lose ground pretty soon. (p. 04)
So in this story the issue of acceptance and being aware
of death is underlined but it does not affect the whole
story.
Another way of dealing with a normative expectation
is to express personally motivated support to that
expectation by linking it with personal traits or personal
history:
The doctor said: youve got only two months to live (. . .).
But for me what he says is relatively. I have gone through so
many things in my life, so I know my body well enough to
knowthat it wont go that fast. [. . .] Imstill a bit hardheaded
in that area, with doctors and stuff like that. [. . .] But then, in
the end it turns out that you do notice youre going downhill
very slowly. (p. 12)
This patient combines his recognition of the normative
expectation of awareness and acceptance with trust in his
own judgment and experience and does not easily surrender
to medical expertise.
The process of becoming able to comply with a normative
expectation like the ability to talk about ones death, can also
be dened as a learning process:
Yes, I can now [talk about death], but not in the beginning.
[. . .] Ive had to learn that. . . Look, in the beginning all I did
was crying all the time. I couldnt utter a word. (p. 05)
Patients not only link personal traits and experiences to
their adherence to normative expectations. In quite a few
instances, patients contrast their own virtuous way of
dealing with an expectation with the negligence of others.
Particularly the expectation living ones life till the end
appears to lend itself easily to comparisons highlighting the
patients good will:
That has much to do with your character. I mean if you
give up and believe what they [doctors] say, like thats
impossible or thats not allowed and stuff like that,
thats not good. If you used to have a coronary problem
they said you cant do nothing, keep calm, dont get tired,
make sure that, dont do that, because its not . . ., right?
But Ive always said: so Ive had my coronary, but what
happened to them wont happen to me. Because Ive seen
people who looked around for a year in a vegetable state,
afraid to do anything. I said that wont happen to me.
(p. 08)
These examples of different ways of using normative
expectations in personal stories illustrate how people
actively relate to expectations. In their stories they seek
to interpret, evaluate and reconstruct these normative
expectations within the context of their own situation and
life history.
5. Discussion and conclusions
5.1. Discussion
Developing good care for dying people is important in
contemporary society. Better medication is available to
control the pain; more and more professional caregivers
focus on the multi-dimensional aspects of the dying process;
hospices are developed; and in education increasing
attention is paid to the care for terminally ill people
[29,30]. Normative expectations about what could be
considered as a good death are inextricably bound up with
these developments.
At the start of this article we introduced the ideas of Seale
who states that people make sense of events, relationships
and themselves by using cultural scripts offered by systems
of expertise, such as medicine, psychotherapy or religion
[1]. And in their search for how to die well, terminally ill
patients will refer to these kinds of scripts and herewith
organize their personal story. Also the anthropologist Frank
[31] argues that people do not make up stories themselves.
Instead, they make use of current ideas, formal structures of
narrative and standards of what is and what is not
appropriate to tell. According to Frank, these elements
embody all kinds of rhetorical and normative expectations
that shape the stories of the storytellers and herewith colour
their identity.
From our study it appears that several normative
expectations can be identied in the stories of patients that
are also put forward in the professional literature; themes
like acceptance and awareness of coming death, taking care
of nal responsibilities and open communication about
death. But at the same time the interviews with patients show
that normative expectations are not automatically and
unequivocally underlined. Instead of merely underlining
them, patients are actively dealing with normative expecta-
tions. By translating and applying these expectations to their
own situation, they create their own personal stories about
their coming death. This both underlines the theoretical
ideas of Seale and Frank, and adds a specic point. Indeed,
in order to construct a personal story people make use of
normative ideas and expectations from the social context
around them. However they do not merely copy them;
existing normative frameworks are tailored to the individual
situation.
Furthermore, our study shows that patients do not refer to
normative expectations on good death in particular, high-
own denitions. They rather tend to disclose more down to
earth concerns and attitudes. Issues such as acceptance and
open communication are not primarily high and noble aims
but related to everyday actions. This is in contrast with the
literature around a good death, in which preparing to die is
depicted as something of a higher order than merely living.
Dying is often regarded as something that has to take place
in a well-considered way, together with the family, in which
the nal acceptation and the completion of life are at the
M. Goldsteen et al. / Patient Education and Counseling 64 (2006) 378386 383
centre. However, in the stories of our patients the terminal
phase is not depicted as a special phase. One does not so
much encounter people continuously grappling with
dramatic and fundamental issues, but rather people
struggling with everyday matters and worries, sometimes
with a dramatic and fundamental dimension.
Another insight that appears from this study is that one
should be sensitive for the danger that the current normative
paradigm in palliative care about a good death might
function as a reductionist and restrictive force in actual care
for dying patients. Because of its very self-evidence, the
aware, autonomous, well-managed and communicative
death might function as a standard that patients are expected
to live up to. It can be stated on the basis of this study that
people show a clear diversity in their way of referring to
normative expectations as well as in dealing with them in the
search for a good death. They have their own ideas and
standards about death and dying and herewith they each die
their own unique death. What should be considered as a good
death is something that cannot be dened in general terms
and is not the same for everyone.
5.2. Conclusion
Central to this article was how terminally ill patients talk
about death and dying and how they in line with the ideas
of Seale and Frank refer to current normative ideas and
expectations about a good death. The results of this study
show that what should be considered as a good death is
something that cannot be dened beforehand in general
terms and is not the same for everyone. In the search for a
good death people show a clear diversity in their way of
referring to as well as in dealing with normative expectations
that are part of the current cultural paradigm.
5.3. Practice implications
Do the results of this study imply the necessity of an
empty recognition by professional caregivers of whatever
values and responses a patient displays? Does the fact that
patients show a diversity in their way of dealing with
normative expectations mean that the ideas people have
about death are by denition morally right and cannot be an
object of discussion? We do not think so. The set of
normative expectations that is acknowledged to be relevant
in palliative care in the professional literature as well as in
this research does have a normative force and it can
support patients to develop and dene their attitudes towards
death and dying. In care giving, professionals contribute to
this normative force; it is part of the paradigm they work
with. Professionals may refer to the normative framework of
palliative care, and invite patients to take this into
consideration. Yet, they should not simply side with the
existing normative expectations and restrict their responsi-
bility to supporting patients in applying these expectations to
their particular situations. They should be open to the fact
that individual patients may take different attitudes to these
norms. This is not to say that all reactions of patients should
be taken for granted. Rather a patients interpretation of a
normative expectation ought to be open for exploration and
discussion. Professionals may invite patients to investigate
their way of dealing with norms, and may try to foster moral
learning. Patients often already express doubts about norms
on death and dying. For professionals such doubts can be a
clue to start a conversation. For this conversation the
deliberative model of Emanuel and Emanuel [32,33] could
be a useful model. This model advocates that professionals
do not withhold their own knowledge and experience from a
patient, even when this would imply some form of
confrontation. The model denes the relationship between
patient and professional as one of joint meaning making.
When a professional thinks that a patient has insufciently
looked into the assumptions and consequences of his or her
expressed wishes, he may actually challenge those. The
normative framework of the professional himself will
inuence this challenging. Yet, challenging the patients
views is not the same as declaring ones own values superior
in a paternalistic way. The aim of deliberation is not to
impose values on the patient, but to invite the patient to take
them into consideration. The relevance of a broadly shared
normative framework on dying well, both in terms of the
expectations we have found in this research and the general
paradigm of an aware, autonomous and communicative
death, legitimates that professional caregivers explore
actively in which ways and to which degrees patients are
willing and able to address their situations in terms of this
framework and to act accordingly. Exploring these values
and normative expectations ought to provide the patient the
opportunity to articulate and develop his own individual way
of coming to terms with their imminent death and to die an
appropriate death; a death that ts with the life story and
personality of the individual.
Acknowledgements
Research on which this article was based was supported
by a grant from the Dutch Government for Health, Welfare
and Sports. The study was conducted in collaboration with
the Centre for Development of Palliative Care Maastricht
(COPZ-M). We gratefully acknowledge the contributions of
the terminally ill persons, their family members, and the
health professionals; in particular GPs who helped recruit
patients to the study.
Appendix A. Interview guide
A.1. Introduction
I would like to talk with you about how it is to be
terminally ill. I am interested in your story; the things you
M. Goldsteen et al. / Patient Education and Counseling 64 (2006) 378386 384
have to deal with at the moment and howyou experience this.
We have prepared a fewquestions, but I will mainly be guided
by what you tell me. The aim of this research is to make
recommendations on the base of your experiences to improve
palliative care. Nothing of what you tell in this interview will
be passed on to a third person. This interview will be
transcribed with all identifying data removed. I would like to
emphasize that we canstopwiththis interviewat anymoment;
when things become to heavy for you for whatever reason. If
necessary I can come back, but if you do not want to talk
anymore that is also good. I will respect this and it will not
have any consequences for the care and treatment you get.
Do you object to tape recording?
Illness story
1. Could you please tell me about what has happened with
you in the past months?
!Possible questions (depending on the story of the
patient)
- How did you live before your illness?
- When did you hear that you had a serious illness?
- Who did inform you about the diagnosis?
- How did you feel?
- What role did the general practitioner play?
- When did you get the idea that you would not recover
anymore?
- What did you do then? What did you think then?
- What kind of support did you need?
2. What kind of symptoms do you have now?
Physical symptoms
3. What kind of physical symptoms do you have now?
4. How do you deal with these symptoms?
5. What kind of inuence do these symptoms have on your
daily functioning?
6. Do you make use of equipment or supplies
7. Do you think that your body or your appearance is
changing?
Psychosocial aspects/existential questions
8. Could you tell me what keeps you busy in this phase of
your life?
9. How do you deal with fears and problems?
10. What helps you in dealing with this?
11. What kind of inuence do these problems have on your
daily functioning?
12. What is for you a good way of passing on?
Informal caregivers
13. Which loved ones or relatives do help or support you at
the moment?
14. What do you think of this help/support?
15. How is your contact with these loved ones/relatives?
16. What do you think about the way they help/support you?
17. Do you deal differently with the situation compared
with your informal caregiver(s)?
Formal caregivers
18. Do you receive help/support from formal caregivers?
19. From whom do you receive help/support?
20. How is your experience with receiving formal care?
21. How is your contact with the formal caregivers?
22. What do you think about the care/support they offer?
23. Do you need information about your situation?
24. When you do not need a lot of formal care right now,
what do you expect in the future with regard to formal
care/support?
25. How are the tasks divided between the different people
who care for you (both formal caregivers and loved
ones/relatives)?
26. How do they cooperate with each other (both formal
caregivers and loved ones/relatives)?
Final questions
27. If you had the chance to change something in the care
you receive, what would you like to change?
28. Within the framework of this research we want to know
how terminally ill patients are dealing with their
situation; what kinds of problems are they dealing with,
what kind of care do they receive, what kind of care is
offered by loved ones/relatives and formal caregivers,
etc. Do you think you were able to talk about this all
with me? Are there things you would like to add?
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