Death Studies, 28: 8297848, 2004

Copyright # Taylor & Francis Inc.

ISSN: 0748-1187 print / 1091-7683 online
DOI: 10.1080/07481180490490889

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AFFIRMING THE CONNECTION: COMPARATIVE

FINDINGS ON COMMUNICATION ISSUES FROM
HOSPICE PATIENTS AND HEMATOLOGY SURVIVORS
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PAM MCGRATH
Central Queensland University, Rockhampton, Australia

The following discussion presents comparative findings from hospice patients and
hematology survivors on the topic of talking about dying to significant others within their
network of family and friends. The insights have been gathered from an Australian
research program that is exploring the notion of spirituality in relation to serious illness.
The findings document the participants awareness, acceptance, and fear of dying. It
documents the difficulty associated with talking about dying, which creates voids in
relationships and deprives seriously ill individuals of their sense of normality, at a time
when they have a strong need to talk and share experiences. Six specific blocks to communication are explored, along with as emphasis on the importance of communicating with
others who have a similar life experience.

There is a plethora of literature indicating that contemporary society is

going through a phase of virtual denial of death (Becker,1973; Buckman,
1998). As Griffin (2000) argued, any topic to do with death is still an
embarrassment to be banished along with its bearers, to the borders of
social consciousness (p. 50). As a consequence, communicating about
death and serious illness is a challenge. This article seeks to address the
challenge of death talk by presenting insights from hospice patients
on their experience with communicating to intimate others in their
Received 23 July 2003; accepted 23 February 2004.
I thank Mrs. Emma Phillips and Mrs. Janet Brown for their work as Research Assistants and
Mrs. Elaine Phillips for her work transcribing the audiotapes for the study.
Address correspondence to Dr. Pam McGrath, Centre for Social Science Research, School of
Nursing and Health, Central Queensland University, Rockhampton, Qld 4702, Australia,
E-mail: pam mcgrath@bigpond.com

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P. McGrath

family and friend network about this taboo subject. The findings are
compared with previously published data from cancer survivors from
the same study that affirm a similarity of issues. The discussion is set
within the context of an academic program on spirituality that is
demonstrating, through research, that maintaining a strong connection
with others within the intimate network of family and friends affirms
meaning in life for those challenged by serious illness.Thus, it is argued,
the present findings have relevance for those interested in both spirituality and communication.
Setting the Context
Maintaining the Connection
The insights have been gathered from an Australian research program
that is exploring the notion of spirituality in relation to life-threatening
illness. The preliminary findings indicate that although for some spirituality can embrace religiosity (McGrath, 2003a; McGrath & Newell,
2001), for most participants it is quintessentially of the ordinary (full
discussion of this notion published in McGrath, 2002). It refers to the
sense that individuals, be they hospice patients or survivors, are making out of their life experience through their intimate connections with
family and friends, work, home, and leisure. The findings from both
groups indicate that the opportunity to share their experience of serious
illness with others within their network of intimate connections is a
core dimension in the individuals expression of spirituality (McGrath,
2003b; McGrath & Newell, 2002). The comparative findings presented
in this article examine the factors that facilitate or inhibit such supportive and sharing communications. Thus, the findings provide insights
that are directly relevant to understanding both spiritual and communication issues for individuals facing terminal illness.
The Research
The study, funded by the Queensland Cancer Fund for 2 years, examines the relevance of the notion of spirituality and spiritual pain for
hospice patients (Arm A) and their careers (Arm B), and the health
professionals who look after them (Arm C), as well as cancer survivors
(Arm D) and patients undergoing curative care in a hospital setting
(Arm E). The findings reported in this article are from the hospice

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patients (Arm A) and are compared with prior data, presently under
review (McGrath & Clarke, 2003) from the cancer survivors (Arm D).
The hospice patients were consecutively enrolled through the Karuna Hospice Service. Prospective participants were contacted and told
of the study and invited to participate in an interview. Participants were
informed of their ethical rights (such as informed consent, confidentiality, right to withdraw) before agreeing to participate and a written
consent was obtained prior to the interview. The university ethics
committee approved the study and the ethics committee ratified project
descriptions and consent forms. Although it has now been demonstrated
that qualitative interviewing with vulnerable populations can be a beneficial experience for participants (McGrath, 2003c), additional ethical
considerations were built in to the data collection for the hospice
patients. The interviewing was sensitive to hospice patients vulnerable
state and was conducted by a trained counselor who had experience
working with hospice families. The interviews were only conducted if a
carer was present in the home during and after the interview.Vigilance
was maintained during the interview for the need for debriefing and
follow-up support by the hospice staff was available for the patients
post-interview. As outlined in the findings, the participants valued
the interviews as an opportunity to speak about their experience with
someone outside their intimate network.
Target Population
As the findings presented are from the hospice Arm of the research, the
full details of these participants will be provided. Because the cancer
survivor details and data are outlined elsewhere (McGrath & Clarke,
2003), it will suffice to indicate that they (n 12) were individuals who
had undergone intensive treatment for a life-threatening hematological
malignancy. As a separate Arm in the same project, the survivors shared
exactly the same methodology as the hospice patients.
All of the hospice participants met the criteria for the communitybased hospice in that they had a terminal diagnosis with less than
6 months to live, had a general practitioner who would be involved in
their care, and a carer who was able to look after them in their home
environment. Most of the participants were female (n 10; male, n 4).
The diagnostic groups included breast cancer (n 4), bowel cancer (n 3),
lung cancer (n 3), prostate cancer (n 1), ovarian cancer (n 1), and

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P. McGrath

two CCF (Congestive Cardiac Failure) non-cancer.The ages ranged from

47 years to 97 years. Most were presently married with adult children
(n 8), with 4 widowed, 1 presently divorced, and 1 never married. All
resided in the suburban area on the north side of Brisbane that is the geographical district serviced by the hospice. All were Anglo Australians
and, with the exception of 1 (English), all had Australian citizenship.
The majority (n 8) indicated no specific religion on the admission sheet.
Five nominated a religion (Church of England, n 1; Anglican, n 2,
Uniting Church, non-practicing, n 1; Catholic, n 1), and 1 recorded
Theosophy. Participants were consecutively enrolled from the hospice
admissions sheet. The only criteria for screening were that patients were
considered physically and mentally able to participate in the study. All
participants approached agreed to participate in the study.
Methodology
The meaning patients are making from their illness experience has
been documented through qualitative research using an open-ended
interview with each participant. The interviews were conducted by a
psychosocial researcher with a counseling background, experience in
conducting and publishing in spirituality research, and many years
experience working with families coping with a member with serious illness. The time and location of the interviews were of the participants
choosing and were all conducted in the patients home. The participants
were encouraged to tell their story from the point of pre-diagnostic
symptomatology up to the present with the opening prompt questions:
Could you tell me of your experience, in your own words and in your
own way, from the time you became aware that you were ill? How has
that changed how you see the world and what you believe is important?
A Rogerian approach was taken to interviewing, with the interviewer
actively listening, asking for clarification or elaboration if necessary,
and at periodic intervals sharing a summary of the discussion to affirm
understanding. In all interviews participants spoke spontaneously, and
in depth, about their relationships with family and friends. Reflections
on intimate relationships led to discussions about communication

usually introduced by participants, but at times directed through openended questions by the interviewer. As qualitative research, an iterative
approach was taken with issues raised about communication in earlier
interviews posited for exploration in later interviews.

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833

The interviews were audiorecorded and transcribed verbatim. The

language texts were then entered into the NUD*ISTcomputer program
and analyzed thematically. A phenomenological approach was taken to
the recording and analysis of the data. All of the participants comments
were coded into free nodes, which were then organized under thematic
headings. There were 97 free nodes created for the full analysis of the
patients transcripts, of which those directly related to the topic, The
Need toTalk, are presented here.
As inductive, phenomenological, qualitative work, the reporting of
findings is based on a commitment to the participantspoint of view with
the researcher playing the role of co-participant in the discovery and
understanding of what the realities are of the phenomena studied
(Crombie, 1996; Streubert & Carpenter, 1995). Thus, a narrative account dominates, with a clear separation between the presentation of the
exact words of the participants in the Findings section and the interpretation in the Discussion section (Grbich,1999). For economy of presentation, the selected nodes have been organized under categories that, when
juxtaposed, build an outline of the issues (Coffey & Atkinson, 1996).
Findings
In summary, the findings document the difficulty associated with talking about dying and/or the experience with terminal illness, which creates voids in relationships and deprives seriously ill individuals of their
sense of normality at a time when they have a strong need to talk and
share experiences. Six specific blocks to communication about terminal
illness are explored, which emphasize the importance of communicating
with others who have a similar life experience. As outlined by the initial
themes, the findings are from participants who are aware of, and accept,
but have normal fear about the fact that they are dying.
Awareness of Dying
There were strong indications in the discussions that the hospice patients
were not only aware that they were dying but also could talk about this
fact. There were many words used to talk about dying indirectly such as
the end,a coffin,get the hard word,advanced stage,the battle is
lost,the last of the story and pretty hopeless. However, some of the
participants named it directly with statements, such as I am going to

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P. McGrath

die.Thus, any obstacle to communication could not be related to lack of

understanding that they were dying.
Acceptance of Dying
Not only did the patients know that they were dying, but they had
acceptance of the fact.Thus, their insights on communication are reflective of individuals who know they are dying and accept that fact. Some
faced their own death previously and so the present was a continuation
of that situation:
They gave me six months to live four years ago. They told me I wouldnt see
Christmas. He said just go home and get everything organised.

There were many that had also experienced the loss of close family
members in recent times, which emphasized the reality of dying.
My husband died (date this year). . . . It was pretty horrific (his dying and the
patient then being diagnosed).

Acceptance incorporated the sense that there was no other alternative

and fighting the fact of dying was useless, for example,
Ive just got to go along with it . . . Im going to die. Right I am.There is nothing
you can do about it.

Although most patients were uncertain about the length of time left to
live, acceptance allowed them to talk about and plan for the actual
death,
I would like someone to be with me at the time. (Spoke about the desire to die at
home.)

Interestingly, not one of the participants who demonstrated acceptance could understand or express the process of coming to that state of
acceptance. It was as if it was an unconscious or mysterious process, the
only explicit manifestation of which was the need for time. As one participant summed up,
Yes, that (acceptance) was difficult, that didnt come very easily, that took quite
a struggle to accept it. I think it just happens. . . . (And you cant fast forward
that ?) Nope (You are not really in control ?) Yes, yes that is true. It just happens.

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835

AcceptanceJuxtaposed with the Continuing Desire for Curative Care

It is important to note that acceptance of death was also evident in those
who, in spite of their serious condition, still chose to explore all curative
possibilities and thus saw themselves as still engaged in a battle with
their disease,
The condition has gone into the advanced stage. (But) We are still open and we
have to look at it in that light as well.

Thus, the communication about serious illness can be situated in an

acceptance of death, even though at times such talk will reflect a desire
for cure.
Fear of Dying
For many, the thought of the process of dying was negative, especially
those who had witnessed a family member experience a difficult death.
An example of a negative description is as follows,
(Fathers death) Horrible thing to see it happen.

There were in the participants statements considerable evidence of

fear of dying,
Because Ive been frightened. Frightened of dying. Im terrified.

Fear is associated with the possibility of pain,

As long as it comes fairly swift and I dont get the same pain as I had when I was
going to take my own life.

There were descriptions of experiences with the terminal trajectory

that participants already found frightening,
I wake up in absolute terror at night because I cant breathe.That was a bit hard
to cope with.

It is not only the actual dying that some individual fear but also the
unknown of what follows,
Even though I know there is an afterlife there is the fear of the unknown.

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However, some noted that they did not have a fear of the process of
dying,
I am not frightened, no, no way in the world.

Others coped by talking about it to specially chosen intimates,

The girlfriend that I did my training with. She knows and shes really good and
we can talk about it (fears).

Thus, it is important to note that although individuals can be accepting of death this can also be accompanied by fear, which will directly
influence communication.
Death and Dying are Difficult toTalk About
All the participants clearly indicated that the topic of death and dying is
personal, frightening, and difficult to talk about for most people. Hence,
it is not easy to include the topic in general conversation,
Theyre scary subjects and I guess often we dont want to touch on it too much.
It is not normal (in general conversation) you dont talk about it you know. . . .
It is very personal.

Talking about dying is particularly problematic in intimate relationships with family and friends for a myriad of reasons. Putting the topic
out for discussion is confronting as it brings into focus the impending
possibility of profound loss for both the patient and their family. Such
conversations can be met with sadness,
(Do you talk about it with your children?) I have a couple of times, you know.
(Is it really hard?) Mmm (close to tears).Yep, but they are good you know.

Avoidance,
Well I rang my daughter and we were talking about something to do with the
illness. She had to hang up really quickly.

Fear,
No, I havent talked about it. I feel a bit too frightened. Two of my daughters are
fine but the other two I cant get to them.
My family comes to visit but they seem to be frightened to talk.

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837

Shock,
When you do tell them they get a shock.

And panic,
And when youre told your head never stops. All of these ideas running around
your head.What should I do? And how to go about it and that.

In short, the discussion of dying is a highly emotion-laden event.

People Avoid and Keep Away
A consequence of the fear and emotion surrounding dying is that the
patient can experience a void of silence where they are not afforded the
opportunity to express their concerns or share their emotions. There
were many descriptions of family and friends actually physically avoiding the possibility of having to deal with the issue of dying by choosing
not to visit.
I know his son doesnt know what to say to him. . . . And that is why they dont
come around. It is very similar to what Ithink myself. Like I cant go to someone
in hospital and talk to them. I couldnt even talk to my father when he was dying.

As the following descriptions reveal, such avoidance of contact can be

a painful experience to the patient,
Nobody actually comes. I think people are frightened. My best friend I havent
seen for yonks. Cant handle it. And like people I have known for 30 or 40 years
(do not come around).

Protecting Family Members

The reluctance to talk does not just come from others but may be an
expression of the patients protective concern not to burden the family
with worries.
Because you dont want them to, sort of, bundle up or get really upset, so you
tend to sort of hold everything back from them. . . . My sister is good but I
couldnt off load onto her, she would just break.

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P. McGrath

Need for Normal Interaction

The hospice patients indicated that the avoidance they experience from
others not only took away their opportunity to share intimately about
their experience with terminal illness but also deprived them of many
pleasures of normal life.
Well life should just keep going on, you know, it is normal. Maybe because I cant
get out and things like that, like we used to. But you know it wouldnt hurt for
friends to come in and say Gdayor come around for a drink.

The fact that they were facing a terminal condition became a strong
factor in depriving them of normal, sociable communication.
Helps toTalk
The participants were quite emphatic about the importance of supportive talk,
Oh I think thats most important to talk.Yes I do. I always say to anybody, talk,
talk. (It is not too threatening for you?) Oh I think it is important!
You really need somebody, even just one person that you can off load on.

The opportunity to talk is important for different reasons for different

people. It can provide a sounding board to help clarify ideas and
thoughts,
(Reflection on her discussions with her counsellor) I think she just goes along
with me . . . whatever I say. Then she will come in and say something different.
That is good because it shouldnt all be one way.

It reduces the sense of loneliness and isolation,

I am glad I am not alone in that I have got people I can ring (spoke enthusiastically about hospice volunteer).

It affirms family bonds through honesty and a sharing of the journey.

Those who had experienced the reverse, that is, silence about the fact
of dying from a close family member, indicated this act left a sense of
betrayal and hurt,
Well Id rather talk and let all my kids know whats going on. Because my husband (who died), he tried to put it away and wouldnt let you know. And Ive
been up front with them. They were so hurt my husband not telling them.

Hospice Patients and Hematology Survivors

839

Discussion allows for planning, both for the process of dying and the
care of the family afterwards,
In the event that things are not happening the way they would hope . . . we will
need to think about what would happen if something went wrong . . . I will get
them together and say Ive thought . . .

Some participants spoke of special people within their intimate circle

that they felt particularly able to talk to,
With my friend I can just be absolutely open.
He and I have a tremendous thing ever since he was a little fellow. So I can talk to
him. He is about the only one.

And how the opportunity to talk strengthens relationships,

(with sister) never had a chance to be close as adults. I told her I loved her and
she just shrugged and walked away. She couldnt handle it. And recently I got a
letter from her in which in the letter she told me she loved me. That was really
nice.Yes, for both of us.

One caveat to the discussion so far is that there is a limit to what one
can express,
Yes, um, it is a difficult one to express in words.

Obstacles toTalking
Although the opportunity to talk about dying and the terminal illness
was seen as a positive, there was considerable discussion about the obstacles to that happening in a constructive way or at all.
Obstacle 1: Emotion-Laden Dimension of Dying
Some of the participants noted that they were not in the position to
deal with the emotional reactions of intimate others to the fact of their
terminal illness,
I dont want to have to deal with her volatility because I just think Ive got as
much as I can cope with. So I cant have her getting upset and crying and then
Ive got to try and calm her down. So yes, Im very careful what I say. I mean, I
love her dearly but Im very careful.

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P. McGrath

Some participants worried, because the topic is considered so emotionally difficult, that individuals will not know what to say if the issue
is raised,
And I dont think they would be real comfortable because they wouldnt know
what to say.

Obstacle 2: The Existential Understanding Gap

Participants indicated that one of the obstacles to effective communication was the fact that unless others had a similar life situation they
were not able to understand or satisfactorily talk about the experience,
It is all very well talking to the hospice. It is all very well talking to friends and
relations but they cant feel the same experience.
Since I have been diagnosed I havent spoken to another person I know that was
in the same situation who has also known they are dying.

Life experience, rather than educational status or clinical skills, was

seen as an important prerequisite to helping, (especially in the area of
cancer support groups) as the following text indicates,
I went to (support group) for the six weeks course. And the girl taking it was
about 20 and with no conception of what she was talking about and it was just
sort of (being nauseated) and Ive attended nothing further since.

Obstacle 3: The Need to Give Permission toTalk

Because talking about a terminal condition and dying is difficult, the
participants indicated that it was important for them to put energy into
giving others the permission to talk. Those who reported a satisfaction
with how others related to them about their dying experience also
demonstrated a willingness to talk about the topic themselves and
encouraged others to do so. For many, this was a conscious strategy to
make people feel comfortable about discussing the topic, referred to here
as giving permission to talk.
I prefer to talk about it because I dont want people to feel uncomfortable. I dont
want people to worry if they mention the word cancer or ask me if Im worried or
anything like that. I find that people are more comfortable around me. Because
they know that I dont mind.You know they dont have to put their foot in their
mouth.

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841

Some individuals, however, are not comfortable withgiving permissionas the following description indicates,
Ive never been in the company of anyone since Ive been ill that has talked about
(serious illness). I have never brought it up. Ive never sort of said to anyone I am
dying of cancer.

A further complication is that even when there is a willingness on the

part of the patient to give permission to talk this needs to be responded
to by the other. If the other is too uncomfortable about the issue, even
permission to talk is not helpful,
But, if they dont feel comfortable I cant talk to them.

The variation between individuals, even when the patient is comfortable with giving permission to talk, can be seen by the following
description,
That is my nature to be very open. And Im naturally fairly frank. Other people
might find it a bit confronting in fact but I can speak so openly about it. I found
most people will talk to me to varied degrees. I tend to be sensitive to other people and if I feel they are uncomfortable with it, I back off. I have one girlfriend
that if I start to talk about it, just cries. So I dont talk with her.

There was one example of an individual who was so interested in the

patients condition that he gave the patient permission to talk rather
than the other way around,
(Talked about a man putting his arms around her at a bar-b-que and saying,I
am very sorry I am told you are dying of cancer). Ithought, Oh Christ, It really
hit me. Ooooph. But that man never left me the whole night. And I was so
pleased. (So it was okay because he was interested?) Yes, that is right.

Obstacle 4: Timing
It was noted that the patients desire to talk was directly related to the
degree of their acceptance of death. Thus, the desire to engage in meaningful conversation depended on appropriate timing. As one participant
summed up with regards to her own reluctance to talk,
I dont want to think of things like that because Im not going to give in yet, you
know. (When the time is right, yes, but not now.Would that be fair to say?) Yep.

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P. McGrath

Another participant spoke of the timing in relation to making

arrangements with her family for how she would be cared for during
the actual time of her dying,
I would like to wait a bit longer. I can tell my girls that Ive spoken to you now
(about dying) and it is this way (I would like to die at home) and ask them can
they cope.You know, put it nicely.You know with nice timing.

Obstacle 5: Need for Personal Space

It is important to note that while talking is considered an important
means of expression and support, patients also appreciate and need the
opportunity for personal space. Talking is not always the preferred
option,
Um, different occasions. Sometimes I love to be alone. Because I like to be alone.
Other times I like to talk to people so it varies.

Obstacle 6: Need to Talk to Someone Outside

the Intimate Circle
Participants indicated that there were reasons why they needed to
talk about dying to others outside the intimate family circle.
Yes, you need someone to talk to. But not my wife. Ive got her, she is here all the
time.
It is good to talk to somebody that you dont know.You can talk to them.Whereas
with my daughters you try not to let them see you are about to cry.

One reason may be to access emotional or counselling support that

will avoid burdening family members,
I do get down in the dumps at times. And I need somebody, somebodys got to be
handy. It is important to talk.

It is perceived as valuable to be able to talk with a knowledgeable

person,
Somebody that knows what I am doing, how I am doing it, why I am doing it.
And they are able to talk about it and know something about it (dying).
You dont know what is going to happen in the end.

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843

It is reported, however, some health professionals are not always comfortable with exploring the process of dying,
They dont seem to talk about it. They more just sneak around it (laughs).

As with the survivor findings, the important issue was to remove the
taboo about discussing dying and to make the offer of being able to talk
available,
It shouldnt be taboo, I mean it is up to you then if you dont want to talk about it
just say I dont. (So just offer and it is up to the person?) Yes, exactly.

Discussion
There is a plethora of literature that posits the importance of meaningmaking as an important dimension of the human experience, and a core
notion of spirituality (Frankl, 1973; Millison & Dudley, 1992; Neimeyer,
Prigerson, & Davies, 2002; Sumner, 1998; Taylor & Ferszt, 1988;
Wald & Bailey, 1990). The empirical findings from the present study
indicate (McGrath, 2002) that, although meaning-making can be a
significant dimension of spirituality for some, an equally important
dimension is that of affirming the immediate connection with life
through family, home, friends, leisure, and work. The core spiritual task
is that of finding satisfaction in living in the here-and-now. Satisfying
connections with others precede meaning-making, for it is through such
connections that the individual can make sense of life. The findings
presented in this article are set within the context of the importance of
the connection-affirming talk.
The findings from the hospice patients are compared with recent
findings from the same study on cancer survivors need to talk about
the experience of serious illness, published elsewhere (McGrath &
Clarke, 2003). Although the outcomes of the confrontation with serious
illness are very different for hospice patients and survivors, the insights
from both sets of participants on this topic are remarkably similar.
Both sets of data affirm the tension generated from the profound need
to talk juxtaposed with the difficulty of sharing conversations about
the implications of serious illness with intimate others. This finding
resonates with Anderson and Martins work (2003), which highlights
the contradiction between the continuing taboo surrounding family

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P. McGrath

communication about serious illness and the fact that supportive relationships are central to healing. Similarly, Reiss, Steinglass, and Howe
(1993) demonstrated that family intimacy can be thwarted during
terminal illness by awkwardness and avoidance.The intent in presenting
such findings is not to pathologize the difficulty of cancer talk as a
dysfunction of any particular family system (Fingerman & Bermann,
2000; Roberts, Baile, & Bassett, 1999; Rothbaum, Rosen, Ujie, &
Uchida, 2002; Yeheskel, Biderman, Borkan, & Herman, 2000), but
rather to normalize the communication difficulty as generic across dissimilar groups such as survivors and hospice patients. Indeed, naming
and normalizing discussions of death and dying are recorded as liberating processes for family members facing the loss of a loved one
(Buckman, 1998). This is an important issue, for as Soothill and associates demonstrate (2001) in relation to cancer patients, the ability to talk
freely to intimate others about the experience of serious illness is one of
the most significant unmet needs. As argued by Leichtentritt and Rettig
(2002), an understanding of such family beliefs and communication
processes is not just relevant to consumers but have significant practical
implications for professionals working with the terminally ill.
In both groups (survivors and hospice patients) the avoidance by
others and lack of opportunity to affirm bonds and share experience
caused by the obstacles to talking about the illness translates into a
degree of spiritual pain. For the purpose of this discussion, the notion
of spiritual pain refers to the definition generated by the present
research program, documentedelsewhere (McGrath, 2003b), definedas,
A sense of diffuse emotional/existential/intellectual pain directly related to the
meaninglessness created as the result of a break with the expected/normal network of relationships that function to connect one to life. A key ingredient in that
pain is the sense that the normal network of relationships and experience with
life are failing to meet the individuals needs, and thus the expected satisfaction
and meaning-making from life are not forthcoming.

Thus, in short, both sets of findings affirm the importance of creating

the space within the intimate connections of family and friends for talking about the taboo subject of the experience with serious illness and
dying.The sense of connection fostered by such intimate communication
can be seen as a core dimension in fostering an individuals spirituality.
For both hospice patients and survivors, there are many significant outcomes from effective communication with family and friends that

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845

strengthen the connection with others. The benefits of engaging in such

connection-affirming talk include accessing emotional support, sharing
and sounding out ideas with others, self-expression, decreasing loneliness. For hospice patients such talk assists planning for dying, whereas
for survivors it helps recovery and transition to normal life.
Although participants indicate the importance of sensitive and supportive communication from health professionals, the findings primarily focus on the significance of, and challenges associated with, talking
about serious illness within the intimate network of family and friends.
Existential issues, such as shared life experience, are prioritized as more
important than counselling skills. In short, it is the others life knowledge and/or capacity to enter into the life space of the survivor or
hospice patient that counts. The theme underpinning effective communication is not clinical understanding but rather the ability to connect
and authentically share the journey.
Although both groups experience the inability of others to talk as
painful, both are acutely aware of the difficulties others face in opening
up such discussions. Both groups provided remarkably similar insights
into the obstacles to engaging in meaningful talk with others about the
life-threatening nature of their illness, which include fear, denial of
death, a desire to protect family members, resistance to dealing with
others emotional reactions, problems caused by others uncertainty
about how to respond, and the existential communication gap.
Interestingly, the cancer survivors did not posit the need to give permission to talk as the hospice patients did. On this issue the hospice
patients spoke in detail, providing insights on their active strategies for
putting their meaning-making on dying on the conversation agenda,
their reluctance to talk to others who do not respond comfortably to the
invitation, and their appreciation of others who helped to include the
issue in conversation. The survivor findings emphasized the need for
others to initiate and demonstrate a readiness to talk about these issues.
Perhaps this is a reflection of the survivors long process of learning that
others are not interested to talk about such issues and so over time they
have developed an emphasis on self-protection through withdrawal.
However, for both groups timing of the discussion is of crucial importance whether the talk is intimate or with a professional. The timing is
directly related to acceptance of diagnosis or prognosis, and emotional
readiness to deal with the sense of loss and grief for both the patient/survivor and their intimate other. The timing is directly related with the

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P. McGrath

need for personal space. Both survivors and hospice patients reported
the importance of the time and space to deal with their emotional reactions independent of the pressure to communicate. Parkess (1998) findings would also posit the need to strike a balance between anticipatory
grief and the living out of remaining life as a factor, as excessive anticipatory grief may mar this final stage.
For both groups the opportunity to talk to others outside the emotional intensity of the intimate circle was seen as important and appreciated when provided. The benefit included an avoidance of burdening
family members, and the opportunity to access important information
about death or recovery.
The opportunity to discuss issues other than illness is also noted as
important by both groups. Although confronted by a life-threatening
illness, both groups seek to focus on living rather than dying.The opportunity to digress, if only momentarily, from the illness is seen as a
normalizing experience that is valued by both survivors and hospice
patients. Such insights affirm Soothill and associates research (2001)
that links significant unmet needs to the degree to which cancer interferes with social activities. The findings also complement Hunter Jones
research (2003) that demonstrates the importance of holiday taking
in the rehabilitation of cancer patients.
Importantly, both sets of participants emphasised the significance of
what hasbeen labelled theexistentialunderstanding gap (McGrath & Clarke,
2003). The consensus from both groups is that unless others have experienced a similar life situation they were not able to understand in sufficient
depth, or satisfactorily talk about, the core dimension of their meaningmaking (i.e., the confrontation with death and the life-altering sequelae of
diagnosis and treatment).Thus, the opportunity to talk to others with similar life experiences is highly valued. Understandably, as the survivors are
trying to construct a positive vision of a future based on the notion of cure
andclosure of the treatment experience, theyalso emphasisedthe negatives
of talking to others with similar experiences because of the fear of hearing
of relapse and being overwhelmed by the stories of others struggles.
It is interesting to note that in both groups there is strong evidence of
acceptance of death and comfort with discussing the possibility of dying.
Such findings go some way to challenging the continuing misconception
that opening up such discussion is insensitive to the needs of the seriously
ill. In both groups there was both an openness and readiness to talk
about dying. As the data demonstrate, however, sensitivity and timing

Hospice Patients and Hematology Survivors

847

are required for a topic that for all concerned is emotionally challenging.
For hospice patients the acceptance will also be accompanied by a hope
for cure, fear of the unknown, sadness, anxiety, a desire to protect family
members and a need to maintain a sense of normalcy.
Lastly, it should be noted that although the participants only made
cursory comments about the limits to verbal communication, this issue
is explored in greater depth through further findings from the spirituality program (McGrath & Newell, 2002)
Conclusion
The findings in this article seek to make a positive contribution to
responding to Griffins (2000, p. 50) call to deal with death openly, as a
natural part of the rhythm of life, and witha willingness to explore the
issues it creates for us both as persons and as communities. It is the hope
and expectation that the findings will contribute to an understanding of
the myriad of communication issues that individuals coping with the
challenge of serious illness must deal with in maintaining their connection with significant others within their intimate network. The findings
affirm the importance of talk and emphasize the benefit of connecting
with others undergoing similar life experience.
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