Jourtial of Clinical Nursing 1993; 2; 235-242

The experience of long-term gastrostomy tube feeding: aphenomenological case-study

DONNA WILSON RN, MSNAssistant Projessor, Faculty of Nursing, Fhird Floor Clinical Sciences Building. The

University of Alberta, Edmonton, Alberta TbG 2G3 Canada

Accepted for publication 16 February 1993

Summary

• A 1991 phenomenological case-study investigated the effect of long-termgastrostomy tube feeding on an incompetent patient and her surrogate decisionmaker. In this case, a daughter chose tube feeding for her severely debilitatedmother after she had become aphasic. The report includes the daughter'sperceptions of (a) her relationship and experience with a tube-fed mother, and (b)her mother's experience with tube feeding.

• The experience of tube feeding differed from what the daughter had expected.The daughter perceived that tube feeding reduced her mother's quality of life.Taste sensations and pleasures of eating were lost. Tube feeding also negativelyinfluenced the daughter's activities and subsequent relationship with her mother.Tube feeding, however, did extend life and did allow ongoing visits by thedaughter and her children.

• The mother could still continue to fulfil the role of a mother and grandmotherto a certain extent. Most significantly, however, tube feeding was perceived toprolong death. Concern over whether her mother would have chosen tube feedingfor herself prevailed.

Keywords: case-study, gastrostomy, lived experience, phenomenology, surrogatedecision making, tube feeding.

Introduction

Tube feeding has attracted relatively little research andsocietal attention despite 30 years of increasingly commonuse (Iieitkemper & Shaver, 1989). Ease of initiation, aminimum of technological requirements, and low cost (inrelation to parenteral feeding) have contributed to itswidespread use. Concerns, however, are now being raisedover the use of tube feeding when its only benefit appearsto be the maintenance of life (Wilson, 1991). Subse-quently, tube feeding has been criticized for prolongingthe dying process (Slater, 1987; Johnston & Justin, 1988;

Norberg et af, 1988; Davis & Slater, 1989; Beaton &Degner, 1990; Wilson, 1991).

Previous research has found tube feeding capable ofsustaining life (Flynn ct al., 1987; Brown ct al., 1989;Kirby et al., 1990; Wilson, 1991), while demonstrating thatcomplications are common and life threatening (W alike etal., 1977; Cataldi-Betcher et al., 1983; Kelly et al., 1983;Prichard, 1988). However, no research appears to havebeen directed at the personal eflect of long-term tubefeeding on patients or their family members. Tube feed-ing, while developing into a common form of life support,has not been described from the patient's or flimilies' point

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236 D. Wilson

of view. It i.s difficult to gather data from patients who aretube fed, since these people are generally unconscious orare dying. It is also difficult to gather data from familymembers who arc involved in the care of a tube-fedpatient, because life support is a sensitive .subject. As aconsequence, little is actually known about the livedexperience of tube feeding (Heitkemper & Shaver, 1989).A qualitative case-study was undertaken to gain an appre-ciation of the experience of long-term gastrostomy tubefeeding. A report of the study and its findings follow.

Research methodology

QUALITATIVK CASE-STUDY DESIGN

Qualitative research generally falls under the researchparadigm of interpretative social science. Interpretativesocial science focuses on the discovery, description, andunderstanding (through interpretation) of 'social pro-cesses' (Carr & Kemmis, 1986, p. 85). The gaining of aholistic perspective is (he major focus of qualitative,interpretative inquiry (Munhall & Oiler, 1986).

Phenomenological inquiry

Phenomenology is a specific qualitative research method.Phenomenology seeks to 'borrow other people's experi-ences and their reflections on their experiences in order to. . . come to an understanding of the deeper meaning orsignificance of an aspect of human experience, in thecontext of the whole human experience' (Van Manen,1990, p. 62). Phenomenology asks 'What is this or thatexperience like?' (Hultgren, 1990), in order to 'describe anexperience from the point of view of the experiencer'(Hultgren, 199(J). Phenomenology 'hopes to achieveawareness of different ways of thinking and acting in itssearch for new possibilities' (Hultgren, 1990). In this studyphenomenology sought to uncover the impact of tubefeeding on a patient and an involved family member,through a series of indepth conversations with a daughterwho chose tube feeding for her incompetent mother aftershe had become aphasic and near death.

Case-study inquiry

A case-study design was also chosen to facilitate depth indata collection (Yin, 1984). Single-subject research hasbeen advocated by Sterling & McNally (1992). Clinicalnursing knowledge may be enhanced through relevant,indepth single-subject case-studies (Sterling & McNally,1992).

Case study

As discussed, one woman was interviewed to gain anappreciation of her experience with tube feeding and whatshe perceived her debilitated and mentally incompetentmother's experience with tube feeding was like. She livesin western Canada, in close proximity to the long-termcare hospital where her mother has resided for 3 years. Hermother and father divorced 3 years previously. Followingthis divorce, she has been her mother's legal guardian. Thedaughter was 15 at the time her mother was diagnosed withHuntington's chorea. She has since remained intimatelyinvolved in her mother's care, which, at the time of datacollection, had been for 15 years. She could remember hermother before her illness began, unlike her younger sisterand brother who have had no contact with their mother formany years. Only she and her own two children visit themother. No other family members were willing or able toassist her when she was required to make the decisionabout tube feeding.

The mother could not give consent for tube feeding orfor participation in this study because she has not beenable to communicate and has had a reduced level ofconsciousness for 4 years. She has required institutional-ization since severe emotional difficulties occurred at thebeginning of her illness. She had been completely depend-ent on caregivers for all activities of daily living, and hadbeen having increasing difficulty with swallowing for 3years prior to tube feeding. In the year prior to tubefeeding she had numerous choking incidents, despite acareful feeding regimen and special diet. Aspiration pneu-monia was diagnosed twice that year.

The mother would have died if tube feeding had notbeen implemented. Following insertion of a percutaneousendoscopic gastrostomy feeding tube and implementationof tube feeding, numerous digestive difficulties occurred.After a number of different tube feeding solutions andfeeding methods were tested, a 24-hour slow continuousfeeding of a commercial feeding solution was initiated.This regimen had been in place for I year at the time ofdata collection. At the time of the study she reacted topainful stimuli only, was bedridden, and had been tube-fed via a gastrostomy tube for l j years.

Sample

Following ethical clearance by a Nursing Ethics Commit-tee, an itiformed consent for participation in this study wasobtained from the daughter. Due to the problematic natureof informed consent in qualitative studies (Robinson &Thorne, 1988), care was taken to ensure that prior to the

Long-term gastrostomy tube feeding 237

study the daughter undetstood the exact purpose of thisstudy. The daughter was also retninded during and afterthe study that she could at any time withdraw from thestudy.

A professional relationship between the daughter andthe principal investigator (PI) already existed befote thestudy. Robinson & Thorne (1988) recotiimended direct,subjective involvement of the researcher in qualitativestudies. Itntnersion does distinguish this study from quan-titative research where objectivity of the researcher en-hances the validity of findings. Immersion and thereforeincreased subjectivity of the tesearcher does create twoproblems; subjects tnay be influenced by the researcherduring the study and the teseatcher may be biased ininterpreting and analj'sing the data (Robitison & Thorne,1988).

Taking these limitations into account, the relationshipbetween the daughter and the PI was betieficial for anumber of reasons. First, the daughter had been observedby the PI, over a 3-year period, to be concerned about hermother. Furthermore, the daughter had remained involvedin her mother's care throughout her long illness. Secotid,the daughter was open about her thoughts atid feelitigstoward tube feeditig and other aspects of her tnother's care.Third, mutual ease in conversation existed between the PIand the daughter. The pritnary reason for conducting thisstudy, however, was that this case represents a commonexample of tube feeding initiated at the end of life, when adecision needed to be made about either using life supportor allowing death to occur.

tiieeting was again arranged at the convenience of thedaughter.

At the second meeting, the daughter reported that shefelt the transcript did, in all but one aspect, reflect herfeelings and thoughts about her experience of tube-feed-ing. She did not feel that she had emphasized enough thatshe had made the only possible decision. Under the samecircumstances, she would again have tube feeding imple-mented.

Over the next 2 weeks, significant themes from the datawere determined by the PI. Themes reflect the 'tneaning ofthe lived experience' (Van Aianen, 1990, p. 77) or the'essence of a certain experience' (Van Manen, 1990, p. 78).Van Manen's (1990) three tnethods of obtaining phetionie-nological themes were used:

• the holistic or sententious approach, where a phrase isgenerated that captures the fundamental meaning of thetext as a whole,

• the selective or highlighting approach, where statementsor phrases in the text are selected for their essential orrevealing nature,

• the detailed or line-by-line approach, where sentences orsentence clusters that reveal the phenotnenoti or experi-ence are noted. The three sets of themes were thencotnpared. One set of 12 common thetnes was devised.The daughter was then tnailed a copy of these themes.

After another 2-week period she was contacted and a thirdtiieeting again arranged at her convenience. In a third andfinal conversation, the daughter agreed w'ith all of thedevised themes.

Data gathering and validation techniques

Data was gathered and substantiated through threemechanistns. First, and foremost, a lengthy setni-struc-tured interview (Yin, 1984) involving the daughter and thePI took place. This interview was undertaken at a titne andplace chosen by the daughter. She chose her hotne sinceshe was most cotnfortable there. The interview scheduleconsisted of two research questiotis:• how has this experience with a tube-fed tnother

influenced your life?• how has tube feeding influenced your tnother's life?

Second, a typewritten transcription of the interview wasmailed to the daughter approximately 2 weeks after theinterview. As was previously planned and discussed, shewas asked to validate or edit the infortnation she hadprovided. This step was included to etihancc the accuracyof the transcript. After another week, the daughter wastelephoned to verify that she had received the transcript,and to plan a date to meet and discuss the transcript. A

Validity and reliability

Validity and reliability measures differ between qualitativeand quatititative research studies. Smith (1990) reportedthat qualitative studies mainly need to meet the criterion ofobjectively depicting reality. To obtain an objective depic-tion of the experience of tube-feeding, this study usedrepeated participant confirtnation during data gatheringand validation of themes (Munhall & Oiler, 1986; Carr &Kemmis, 1987). Substantiation of thetnes was alsoreported by Sandelowski (1991) to be an itnportant ele-ment in judging the reliability of qualitative data. VanManen (1990) furthermore recotntnended that exatnples ofdialogue from transcripts be used to provide teaders withmore insight into the experience of others. In the followingsection, selected narratives from the transcript will sub-stantiate tbe validity and reliability of this research studyatid report.

238 D. Wilson

Research findings. Themes and substantiatingdata

THEMES DERIVED I-ROM THE INTERVIEW

Tube feeding was perceived to be a negative influence in the

mother's life

Two major changes in the mother's life occurred. The firstchange is explained by this statement: 'no more food;nothing tastes good anymore. That was her last littlepleasure. (Before the tube feeding) there was taste, therewas some enjoyment, something to look forward to. Andwhen she got the tube in, it was like that last little avenueof pleasure was closed off. That last little thing; no moreand that was sad. Mom really, really enjoyed her food alot'.

The second major change in the life of the mother was inhabits: 'it sure changed things a lot, just tremendously.Because I used to take her out, you know, at least once aweek and (now) she can't be away from the tube feeding,she has to have it continuously. Her stomach won't takeany slack. . . . She can't go to the store, nothing, justnothing. She's really stuck with it'.

The daughter's awareness of the influence of tube feeding

came after tube feeding had been implemented

For example: 'I never even thought to ask how will thetube feeding influence her life. I never thought of that. Ithought three tube feedings a day, you know, like threemeals a day, that's what I thought'. Another example ofher lack of ability to foresee the future is: 'I didn't know it(tube feeding) was restrictive like this'.

Tube feeding was perceived by the daughter to be a

Itfe-supporttng technology

For example: 'tube feeding . . . is prolonging a life. I don'tknow if she (her mother) would want to prolong it'; 'it wasreally quick. We either do this, or let her go'; 'I was justhysterical because they couldn't get a hold of her doctorand she needed fiuids and it had been hours already, andthe one thing I do know is that your body needs fluids. Itmay not need food as much but it needs the fluids'.

She was aware that her mother had reached a pointwhere the mother could no longer swallow, and had beenunable to take in food and fluids for hours. She knew deathwould occur quickly if fluids were not given to her motherand that, even if an intravenous infusion were started, aslower death by starvation would occur. For example:

'They were going to let her starve to death, you know giveher fluids; that's what they told me, and I couldn't do that';'I heard it was very painful, starving to death'; and'thinking of her going through the pain of starvation(influenced my decision to tube feed her)'.

Despite tube feeding being perceived to be a life supporting

technology, it was not felt to be in the same category as

other, more intrusive, life-support measures

The daughter repeatedly related that she would not wantother life-supporting technologies for her mother, and shefelt certain that her mother also would not want 'unnaturalmeasures', 'life-saving devices', or 'extraordinarymeasures'. For example: 'if she has a heart attack orwhatever, they won't do anything . . . hook her up to thisand this and this to keep her alive', and 'I agree where ifsomething happens; if she has a heart attack or whatever,they won't do anything. That's terrible, but I don't thinkshe'd want them to'. Her differentiation between differenttypes of life supporting therapies is also borne out by thisstatement: 'who out of the blue, thinks of tube feedings? Ithink of getting into an accident and being prolonged withmachines; that's all I think. I never think of tube feedings .

The daughter frequently mentioned that tube feedingwas only providing food and fiuids, which to her was afundamental need. For example: 'I wouldn't want her keptalive by extraordinary means; anything beyond that, butbasic feeding . . .'; 'You know to me, this is a basic needand to deny her food, I just can't do that. Food and liquids.But beyond that then that's something else. I don't thinkanybody would. Why prolong a life like that? It's badenough as it is, prolonging it with tube feeding'; 'I mean,it's just so natural, getting food and being bydrated; it'sjust two basic needs'.

Tube feeding is not part of conscious life planning nor

ordinary conversation, in comparison with other life

supporting technologies (such as cardio-pulmonary

resuscitation and use of respirators and other intensive care

technology)

For example: 'I just made the best decision I could becausewe never talked about this; Mom and I. If I had known herwishes, that would have been a lot easier'; 'I just couldn'tdo anything else at the time because I didn't know anybetter. I still don't know any better. She hasn't been ableto communicate for so long'; 'who talks about tubefeeding? (If a conversation occurs, it is) usually over beingkept alive by extraordinary means. . . . You know I'venever thought of something like (tube feeding)', 'Dad said

Long-term gastrostomy tube feeding 239

they never talked about any of this'; and 'I talked to an oldfriend that she had known years and years ago and I said"Did she ever talk about anything like this?" (And shesaid) "No, we never did, never".

Tube feeding supports life while simultaneously prolongingdeath

Awareness that her mother's death would eventually occurwas demonstrated repeatedly: 'I hope that when she doesdie it will be at least more peacefully, not the way shewould have if she was still eating (and choking on the foodand fluids)'; 'she just seems so much healthier than whenshe was being fed by mouth. She's so much better, she's alittle stronger than I thought. It's awful to think (aboutwhy tube feeding was started), if she was going to dieanyways'; 'at the time (tube feeding was started), they saidno, she won't (have her life prolonged), and I thought shejust can't go on long like this; living such a life, you know,such an existence'; and 'Now I'm learning that it might bemore drawn out than I thought. Now I'm learning thatshe's not deteriorating as much as I thought'.

The passage of time was only now becoming important

The daughter was surprised to learn that tube feeding hadoccurred for 1] years, saying 'I can't believe that she's hadher tubes in that long'. She later related that 'I don't thinkI could have made a different decision but maybe as timegoes on and maybe if she keeps going on and on and on,you know, and maybe she will spend more and more timein bed. I know she's spending a lot of time in bed now andthat bothers me. She is being turned from side to side andshe can't really watch TV. She's down quite a bit in bed.She's not propped on the pillow. She has to be quite flat sothat she can't really see things and boy, what a life'; 'Rightnow she seems pretty healthy, basically, and you wonder.It's a horrible thing to think "Gosh, I'd feel better if shewas deteriorating more and is on her way"; 'they led me tobelieve that it (tube feeding) would probably be only for awhile (until her death in the near future from her disease ora heart attack)'.

With this lack of awareness of time came anotherimportant finding. The daughter had not given anythought to withdrawing tube feeding after it was imple-mented. For example: 'I never thought you could pull theplug on tube feeding'.

The mother derived some benefit from tube feeding

Improved physical strength and continued life, the ab-sence of choking, and the removal of the need for emerg-

ency treatment of choking w ere perceived benefits of tubefeeding for the mother. For example: 'vv'hat it has done forher really, is that it's made her safe. I used to worry aboutthat all the time. They would come in and feed her atsuppertime and she would choke and choke. (This oc-curred) even when I would feed her quite a while ago.They used to have to clean her out, put tubes down intoher and it was terrible. And I know it was terrible for her togo through that. I could tell. We would go there to visitand they would be working on her and you knew it wasawful for her to go through that. You could tel l . . . anytimewe could lose her. And now she's more comfortable, youknow, if you can call it better. There's no danger of losingher that way. I just wouldn't want her to die painfully, likechoking or something like that. That would be awful, justawful. So in that way, it's made her safer'.

The fact that life was sustained was another benefit oftube feeding. As previously indicated, the daughter knewthat her mother would have died if tube feeding had notbeen implemented.

Tube feeding reduced her mother's perceived quality of life

For example: 'I don't know. If she had some quality of life;if she could still go out and do things and visit, you know%even when she can't communicate, totally different story.Because I could say that she's still continuing on and it's asgood as we can get it. But, because of the tube feeding, shehas so many freedoms restricted'; 'Now thinking about thekind of person that she really was, boy, she wasn't one tosit around and take things easy or just sort of lay around.. . . I think how awful, what a horrible existence just to goon and on like this'; 'She's lost out on the pleasure of foodwhich is really sad and she can't go anywhere. At least wewent somewhere once in a while, or even to a movie. Butsitice she has had the tube feeding, nothing. . . . In thefreedom way, boy, there's just nothing she can do. Downto the TV room and that's it. Her quality of fife has reallygone down that way'; and 'That's all it is, just anexistence'.

'Tube feeding negatively influenced the daughter's life habits

The daughter has a long-term habit of visiting weekly,although she related that it is becoming more difficult tovisit as time goes on. She found that the amount of timeneeded to visit her mother was a significant factor and thefact that her mother was not responsive to her on somevisits was another. In addition to these factors was rhcproblem of interrupted visits, as on some visits the nurseswere busy with her mother. The greatest change for the

240 D. Wilson

daughter, however, came from her perceived lack of abilityto help her mother any longer and to improve her mother'squality of life. For example: 'it sure changed things a lot,just tremendously. Because I used to take her out, youknow, at least once a week and (now) she can't even beaway from the tube feeding, she has to have it continu-ously'; and 'Last Christmas was the first Christmas shenever went out. But I still went in and I spent Christmaswith her. I went in there and they didn't have her light on. . . she was in the dark, and no music or anything'. Thedaughter also said she would shop for decorative items forher mother's room, but these were not appreciated by thehospital staff who had to work around them in crowdedquarters. She had removed a number of decorative itemsfrom her mother's room as a result.

'Tube feeding both positively and negatively influenced the

daughter's relationship with her mother

It was obvious that here was still hope that the motherwould fulfil a mother's and grandparent's role. For ex-ample: the daughter related how she talks to her motherabout what is happening in her own life. She felt hermother does listen to her at times and still care about her.She did know, however, that on some visits the mother wasunaware of her, for example: 'You wonder how aware sheis of things. . . . I would think that most times she is. Likelast week she was more aware of things. She was watchingme and I could tell she was listening to me, but sometimesshe doesn't'.

Tbe daughter also continued to take her children in tovisit, and she was glad that the children were able to seetheir grandmother. The youngest grandchild would play inthe room and would, at times, lay beside the grandmotherin her bed. The oldest grandchild would talk to hergrandmother. The daughter was concerned over thesevisits, however, 'I know we only go in to see her once aweek and 1 wonder, does she still enjoy seeing hergrandchildren come up and visit her.' I know she loved life,she loved her kids like crazy, but as 1 say, whether she'dwant to go on just for the sake t)f seeing us every week, Idon't think I would. . . . It's only once a week.'

'The tube feeding decision made by the daughter had a

long-term emotional impact on her

l'our comments significantly demonstrate the emotionalitnpact of the daughter's decision to have tube feedingimplemented: 'I guess f am starting to feel a little moreguilty now because she is going on and on, and (shespends) less time getting up, less freedom because of the

tube feeding'; 'I'm only there fbr a few hours a week, youknow, and she's there every single day. What a life, boy!';'Everytitne I go there, I think, I'm so glad I can walk out ofhere and I feel so bad that she has to stay. (There is) thesmell, and it's not the Plaza. You know it's very dull (forher there)'; and 'I think how awful, what a horribleexistence, just to go on and on like this.'

The daughter, as the primary decision tiiaker, was leftwith a heavy burden of responsibility: 'I was the one whohad to make the decision; just tne, all by tnyself because noone else was involved'; 'when you're by yourself too it's alittle more frightening. And that's when you need supportbut when you don't have any family support you make thebest decision you can'; 'You really feel like you're doingthe right thing and you know, 1 just felt terrible. But I hadto do what I thought was best'; and 'I just tnade the bestdecision I could because we never talked about this; Momand I. If 1 had known her wishes, that would have been alot easier'; 'What a horrible thing to be faced with,Christian or no, you still have your feelings and, you know,that's my Mom. You still have very hutnan feelings aboutthis'.

Discussion

It is obvious that the experience of gastrostomy tubefeeding differed from what the daughter had expected.The actual experience of tube feeding could not beanticipated. Perhaps this is undetstandable because it maynot be possible to have insight into such a tnajor life eventuntil a person retrospectively 'looks back' (Freeman, citedin Sandelow.ski, 1991, p. 164). Most significantly, tubefeeding was perceived by the daughter to reduce thequality of life that her mother had. Quality of life appearsto be a major consideration when life support is a treat-ment option (Pearhnan et al., 1982; Ivey, 1984; Wolff6-/ al.,1985; Goebel-Christopher, 1986; Frampton & Mayewski,1987). The mother's daily habits and common life eventswere changed when tube feeding was implemented. Tastesensations and pleasures of eating were lost. In a lifedevoid of many of the simple pleasures associated withindependent living, tube feeding was perceived by thedaughter to be a negative sensory factor. The price of lifeextension through tube feeding, in this case, was very high.

Tube feeding also negatively influenced the daughter'svisits and other normal activities with her mother. Cotise-quently, it negatively affected her relationship with hermother. Heitketnper & Shaver (1989) wartied that 'by itsvery nature, enteral feeding implies the presence of afeeding tube that restricts individuals' normal patterns ofactivities'. Bodinsky (1991) also felt that the insertion of a

Long-tertn gastrostomy tube feeding 241

feeding tube is an uncomfortable procedure and is there-fore a violation of the ethical principle of non-malfeasance.Despite these negative factors, tube feeding was recog-nized by the daughter as a life-supporting measure thatdelayed an inevitable death. This tube feeding assisteddeath, however, was preferable to a choking or starvingdeath. In retrospect, as indicated, the daughter still felt shehad made the 'only' choice. She felt tube feeding shouldhave been implemented for her mother.

The possibility of w ithdrawing tube feeding after it hadbeen implemented was not a conscious option for thedaughter. Consequentially, the daughter lacked an aware-ness of the time that had passed since tube feeding wasinitiated. Tube feeding may sustain the mother's life for along period of time. Wilson (1991) found patients in onewestern Canadian auxiliary hospital had been tube-fed onaverage nearly 4 years. Tube feeding ranged from 6months to 15 years in duration. A regrettable lack ofknowledge was also evident when the daugher indicatedshe thought life supports could never be withdrawn. Shewas surprised to learn that no Canadian laws or healthpolicies prohibit withdrawal of life-supporting technology.

Tube feeding did allow continued life for the mother,and subsequent ongoing visits by the daughter and herchildren. Some mothering and grandmothering functionscontinued to be fulfilled to some degree by the mother.Tube feeding may fulfil another important function, how-ever. Ivey (1984), a nurse, describes her own need for 'timeto adjust to the gravity of her (own mother's) illness andimpending death'. Tube feeding may therefore allow timefor an awareness of death and preparation for death tooccur. It is unfortunate if this is the case, as life support isdifficult to withdraw once it is initiated (Wilson, 1991).The costs of life supporting technology and continuedhospitalization of life supported patients are high. Moreimportantly, the emotional impact of prolonged dying forthe daughter, her family, and involved health-care profes-sionals is significant.

Despite the long period of time since she had decided tohave tube feeding implemented, the daughter still won-dered if the mother would or would not have chosen tubefeeding for hetself In the absence of an advanced treat-ment directive (or living will) specifying the mother'spreference, the daughter chose to have tube feedingimplemented. This position of primary decision maker hada heavy sense of responsibility and caused the daughterongoing concern over whether she made the right decision.Lynn & Glover (1990) indicated that relatives are appro-priate decision makers, as 'they are the ones who mustmake sense of and live with a nearly incomprehensibletragedy. They are the ones who will have to live most

closely with the outcomes (of their decision)'. Thedaughter's feelings of almost overwhelming responsibilityand guilt over her decision arc mirrored by others. Forexample, a nurse, w ho chose not to have her grandmother'slife extended by life supporting technology reported anextreme emotional impact (Goebel-Christopher, 1986). Itis apparent that there is no easy solution to the dilemtna ofeither implementing life support or allowing death tooccur.

The daughter's decision to implement tube feeding inthis case was heavily based on her belief that food andfluids are basic tenets of life. Bodinsky (1991) related thatfamily members may choose tube feeding for their relativesbecause they care for them. Food provision, therefore,expresses a caritig attitude toward others. It was obvious,however, that the daughter would have preferred to havebased her decision on her mother's previously expressed,self-determined wishes. Lynn & Glover (1990) similarlyrecommended that surrogate decisions be based on thepatient's values and preferences. The daughter was utifor-tunately not able to determine her mother's values andpreferences in relation to tube feeding. A difficult decisionwas then made to implement tube feeding. An equallydifficult period of living with tube feeding ensued.

Conclusion

An appreciation of the experience of long-term gastro-stomy tube feeding has been gained. As was demonstrated,the benefit of life extension through tube feeding wasoverlaid by the daughter's burden of guilt over the effecther decision had on her mother's quality of life. Care mustbe exercised in generalizing these qualitative researchfindings to other patients and fatriilies. The knowledgegained from this study will, however, assist with anitnprovcd understanding of the possible impact of tubefeeding wiien it is implemented by a surrogate in anambiguous life support situation.

While this study sought the experience of both themother and daughter in relation to tube feeding, it isevident that only an undei-standing of the daughter'sexperience was obtained and subsequently reported. Themother's experience could only be perceived, minimally,by the daughter. The inability of severely debilitatedpersons to conituunicatc their vvishes, feelings, andthoughts continues to be an otigoitig pt-oblcm. Advancetreatment directives may be the only method of ensuringongoing patient autonomy.

One further observation is worthy of mention. Thisqualitative case-study design was found to be a powerfulmethod of eliciting data. Interpretive social science in the

242 D. Wilson

form of phenomenology has, in addition, created 'thepossibility of practical change' (Carr & Kemmis, 1986, p.91). Through reacting to this report of the lived experienceof tube feeding it is expected that nurses and other health-care professionals will have an increased awareness of tubefeeding. Heightened sensitivity to tube feeding and theimpact of tube feeding on individuals is expected to ensue.Health-care professionals, patients, and families may thenbe more successful at discussing tube feeding as a lifesupport option and resolving some of the misunderstand-ings and ethical dilemmas common with tube feeding.

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