affirming the connection - comparative findings on communication issues from hospice patients and...

8/10/2019 Affirming the Connection - Comparative Findings on Communication Issues From Hospice Patients and Hematolog

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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 timewhen they have a strong need to talk and share experiences. Six specific blocks to commu-

nication 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 ofsocial 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,

Death Studies, 28: 8297848, 2004

Copyright#Taylor & Francis Inc.

ISSN: 0748-1187 print / 1091-7683 online

DOI: 10.1080/07481180490 490889


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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 isdemonstrating, 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 spiritual-

ity and communication.

Setting the ContextMaintaining 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 spiri-

tuality 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 mak-

ing out of their life experience through their intimate connections withfamily 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 suppor-

tive and sharing communications. Thus, the findings provide insights

that are directly relevant to understanding both spiritual and communi-cation issues for individuals facing terminal illness.

The Research

The study, funded by the Queensland Cancer Fund for 2 years, exam-

ines 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

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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 commentswere 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 acc-

ount dominates, with a clear separation between the presentation of the

exact words of the participants in the Findings section and the interpre-

tation in the Discussion section (Grbich,1999). For economy of presenta-

tion, 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 talk-

ing about dying and/or the experience with terminal illness, which cre-

ates 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 initialthemes, 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 islost,the last of the story and pretty hopeless. However, some of the

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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 curativepossibilities 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 nightbecause Icant 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,



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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 accept-

ing 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 relation-

ships 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.

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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 avoid-

ing 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 dontcome around. It is very similar to what Ithink myself. Like I cant go to someone

in hospital and talk tothem. 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



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Need for Normal Interaction

The hospice patients indicated that the avoidance they experience from

others not only took away their opportunity to share intimately abouttheir experience with terminal illness but also deprived them of many

pleasures of normal life.

Well life shouldjust keep going on, you know, it is normal. Maybebecause 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 suppor-

tive 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 enthusiasti-

cally 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 hus-

band (who died), he tried to put it away and wouldnt let you know. And Ive

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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 willneed 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 obsta-cles 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



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Some participants worried, because the topic is considered so emo-

tionally 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 communi-

cation 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 thepermission to talk. Those who reported a satisfactionwith 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 itbecause I dont want people to feel uncomfortable. I dont

want people to worry if they mention the wordcancer 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

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Some individuals, however, are not comfortable withgiving permis-

sionas 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 comfor-

table 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. Itend to be sensitive to other peo-

ple and if I feel they are uncomfortable with it, I back off. I have one girlfriendthat 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 amtold 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 sopleased. (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 mean-

ingful 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



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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 theopportunity for personal space. Talking is not always the preferred

option,

Um, different occasions. Sometimes I love tobe alone. Because I like tobe alone.

Other times I like to talk to people so it varies.

Obstacle 6: Need toTalk to Someone Outside

the Intimate CircleParticipants 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 goodto talkto somebody that you dont know.You can talktothem.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 thatwill avoid burdening family members,

I do get down in the dumps at times. And I need somebody, somebodys got tobe

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).

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communication about serious illness and the fact that supportive rela-

tionships 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 presentingsuch 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 dis-

similar groups such as survivors and hospice patients. Indeed, naming

and normalizing discussions of death and dying are recorded as liberat-

ing processes for family members facing the loss of a loved one(Buckman, 1998). This is an important issue, for as Soothill and associ-

ates 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 byothers and lack of opportunity to affirm bonds and share experiencecaused 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 net-

work of relationships that function to connect one to life. A key ingredient in thatpain 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

andmeaning-making fromlife 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 talk-

ing 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 out-

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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 loneli-

ness. For hospice patients such talk assists planning for dying, whereasfor survivors it helps recovery and transition to normal life.

Although participants indicate the importance of sensitive and sup-

portive communication from health professionals, the findings primar-

ily 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 knowl-

edge and/or capacity to enter into the life space of the survivor orhospice patient that counts. The theme underpinning effective commu-

nication 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 ofdeath, a desire to protect family members, resistance to dealing withothers 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 per-

mission 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 theissue 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 impor-

tance whether the talk is intimate or with a professional. The timing is

directly related to acceptance of diagnosis or prognosis, and emotionalreadiness to deal with the sense of loss and grief for both the patient/sur-



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need for personal space. Both survivors and hospice patients reported

the importance of the time and space to deal with their emotional reac-

tions independent of the pressure to communicate. Parkess (1998) find-

ings would also posit the need to strike a balance between anticipatorygrief and the living out of remaining life as a factor, as excessive anticipa-

tory grief may mar this final stage.

For both groups the opportunity to talk to others outside the emo-

tional intensity of the intimate circle was seen as important and appre-

ciated 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 asimportant by both groups. Although confronted by a life-threatening

illness, both groups seek to focus on living rather than dying.The oppor-

tunity 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 inter-

feres with social activities. The findings also complement Hunter Jones

research (2003) that demonstrates the importance of holiday takingin the rehabilitation of cancer patients.Importantly, both sets of participants emphasised the significance of

what has been labelledtheexistentialunderstanding gap (McGrath & Clarke,

2003). The consensus from both groups is that unless others have experi-

enced a similar life situation they were not able to understand in sufficient

depth, or satisfactorily talk about, the core dimension of their meaning-

making (i.e., the confrontation with death and the life-altering sequelae of

diagnosis and treatment).Thus, the opportunity totalk to others with simi-

lar life experiences is highly valued. Understandably, as the survivors aretrying to construct a positive vision of a future based onthe notion ofcure

andclosure of thetreatment experience, theyalsoemphasisedthenegatives

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 seriouslyill. In both groups there was both an openness and readiness to talk

846 P. McGrath


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