JOURNAL OF PALLIATIVE MEDICINEVolume 6, Number 5, 2003© Mary Ann Liebert, Inc.

Family Beliefs Regarding the Nutritional Care of a Terminally Ill Relative: A Qualitative Study

SUSAN ELAINE MCCLEMENT, R.N., Ph.D.,1 LESLEY FAITH DEGNER, R.N., Ph.D.,1

and MICHAEL STEVEN HARLOS, M.D., FCCP2

ABSTRACT

Objective: To develop a conceptual model of family caregiver beliefs and behavior related tonutritional care of the terminally ill by examining the perspectives of family members, pa-tients, and health care providers.

Design: Qualitative study using in-depth, open-ended, face to face interviews, participantobservation, and content analysis.

Participants: A total of 47 participants from 4 groups: hospitalized palliative patients withcancer (n 5 13), family members of hospitalized palliative patients with cancer (n 5 13), healthcare providers on a palliative care unit (n 5 11), and bereaved family members who had pre-viously experienced the death of a relative on a palliative care unit.

Outcome measures: Participant views on nutritional care in the terminal phases of illness.Results: There is marked variability in the ways family members respond to a dying cachec-

tic anorexic relative. The overarching theme of “doing what’s best” captures this variabilityand integrates the major categories into the key analytic model emerging from this study.

Conclusion: We have developed a conceptual model of family beliefs regarding the nutri-tional care of a hospitalized terminally ill relative. The model has implications for education,practice, and research regarding nutritional care in the palliative care setting.

737

INTRODUCTION

ANOREXIA AND CACHEXIA are prevalent prob-lems in palliative cancer patients.1,2 To date,

however, the majority of research related to theseissues has bee biomedical in nature.3 This line ofinquiry has produced important information re-garding the pathophysiology and clinical man-agement of cancer malnutrition,4,5 but little isknown about the beliefs that family hold regard-ing such care. The minimal literature on this topic

suggests family members are often embroiled inconflict with dying patients and health care pro-viders over what constitutes appropriate nutri-tional care in the face of advanced disease.6,7 How-ever, the concepts related to this dynamic arepoorly understood and conceptually underdevel-oped. The purpose of this study was to develop abeginning substantive theory aimed at uncoveringthe social processes inherent in family interactionswith patients and health care providers around theissue of nutritional care in a palliative context.

1Faculty of Nursing, University of Manitoba, Winnipeg, Manitoba, Canada.2Palliative Care Sub-Program, Winnipeg Regional Health Authority, Canada.

SUBJECTS AND METHODS

The study was conducted on a palliative careunit of a university-affiliated teaching hospital incentral Canada. The unit had a 35 patient bed ca-pacity, and admitted approximately 300 patientsper year, the majority of whom have a diagnosisof terminal cancer.

Participants in the study included terminally illcancer patients receiving care on the palliativecare unit (PCU) (n 5 13), family members of a ter-minally ill patient receiving care on a PCU (n 513), family members whose relative had died onthat unit in the past year (n 5 10), and health careproviders regularly assigned to work on the PCU(n 5 11). Participants were excluded if they wereyounger than 18 years, were unable to under-stand written English, or refused to take part inthe study. Patients were also excluded if theydemonstrated evidence of cognitive impairmentas judged by their health care provider. All par-ticipants were interviewed by the first author.

Of the 15 patients approached, 4 refused to par-ticipate in the study, citing reasons of “feeling toosick,” “feeling too weak,” “not interested,” and“having too much going on right now.” Of the 16family members approached, 3 declined furtherparticipation upon having the study explained tothem. Reasons for refusal included not wantingto be away from the bedside of their relative,“feeling too tired,” and “feeling too upset to talk.”None of the bereaved family members ap-proached to participate in the study declined.One of the 12 health care providers approacheddeclined participation, citing the reason of beingtoo busy to be interviewed.

Consistent with the grounded theory method,sample size was not formally calculated.13 Rather,participants were recruited until the point of sat-uration. Saturation refers to the state wherein nonew or relevant data seem to emerge regardinga category, categories are well developed in termsof their properties and dimensions, and the rela-tionships between categories are well estab-lished.14

This study used the grounded theory method,a qualitative research approach designed to ex-plore social processes inherent within human in-teractions, describe phenomena in naturalisticsettings, and uncover the practices, beliefs, andbehaviours of individuals or groups as they nor-mally function in real life.8,9 The method involves

the application of systematic steps and proce-dures that result in the development of an in-ductively derived theory that is “grounded in thedata” and provides theoretically complete expla-nations about a given phenomenon.10

Interviews

Data were gathered by in-depth, semistruc-tured, face-to-face interviews, and participant ob-servation. Patient interviews ranged in lengthfrom 10–40 minutes. Family member interviews(both in-patient and bereaved) ranged from 11/2

to 3 hours in length. Health care provider inter-views ranged from 40 minutes to 3 hours inlength. All but three interviews conducted for thestudy were audiotaped and transcribed. Two ofthe patients recruited for the study had laryn-gectomies but no voice modulators. Their voiceswere thus inaudible. One family member was un-comfortable about having her voice recorded. Ineach of these three cases, the researcher took ex-tensive notes when recording the answers toquestions asked during the interview.

A preliminary interview guide was developedusing sensitizing questions derived from the lit-erature, clinical experience, and observationsmade on the PCU. Interviews began with grand-tour questions, becoming more focused as datacollection proceeded. Interview questions wererevised as the study proceeded in order to trackthemes that emerged from the data, and test pre-liminary hunches and hypotheses. Probes wereused to encourage participants to elaborate uponor clarify comments made during the interaction.For example, patients would initially be asked thequestion, “Tell me about your illness. Has it af-fected your appetite, or your ability to eat ordrink?” Follow-up probes might include ques-tions designed to access the similarities and dif-ferences in patient and family reactions to de-creased intake, and to elicit the responses ofhealth care providers in response to the patient’sdecreased appetite.

Family members would initially be asked thequestion, “Tell me about your family member’sillness. Has it affected his/her appetite or abilityto eat or drink? Follow-up probes included ques-tions designed to access family responses to de-creased intake, their perception of the patient’sreactions, and possible explanations for decliningintake. Questions regarding family member per-ceptions regarding the reactions of staff to de-

MCCLEMENT ET AL.738

creased intake in their family member were alsoposed.

Health care providers were asked to explainwhat type of nutritional care they thought wasmost appropriate for advanced cancer patients inthe terminal phases of illness; what types of con-cerns family members raise about nutritional carein the palliative care context; why they thoughtfamily members responded in a particular way;and how they approached family members whenthey and family members held opposing viewsregarding nutritional care of the patient.

Interview data were augmented through thefirst author’s participatory observation on thepalliative care unit. A variety of events were ob-served at various times of the day and/or evening(e.g., handing out meal trays; assisting patients toeat; interactions between health care providers,patients, and family members, and patient careconferences). Observations periods lasted from2–6 hours daily. The number of observation hourstotaled approximately 200 during the data col-lection phase of the study.

Data analysis

Interview transcripts and field notes were readand analyzed using constant comparison tech-niques. In this inductive analytic approach, lines,and passages of test are sequentially analyzedwithin the context of the entire interview to codethe intent of the section, identify themes, andmeaning within the context.9,10 Each piece of datais compared to all other data to discern patternsor themes, and the presence, absence, or variationof patterns in the data.10,11 These operations re-sult in the identification of the core category, andthe systematic delineation of its relationship toother major categories emerging from the data.10

Coding procedures were conducted by the firstauthor, who consulted with other members of the research team regarding the salience of theemerging themes and categories. The emergingmodel was vetted through the second and thirdauthors, who provided feedback and input re-garding the coherence of theoretical linkages pro-posed in the model, its parsimony and clinicalsalience.

The validity and reliability of the results asthese concepts are understood within the contextof qualitative research12,13 was achieved by: (1)prolonged engagement (14 months) on the PCU,which facilitated the development of a trusting

relationship with participants; (2) persistent ob-servation of participants interacting with eachother about nutritional care issues over time; (3)the use of multiple data sources and data collec-tion methods, a process referred to as triangula-tion; and (4) systematic checking of the emergingmodel with both study participants and palliativecare colleagues from other parts of the country.

Research ethics

This study was approved by the University ofManitoba Faculty of Nursing Ethical ReviewCommittee, and written informed consent wasobtained from all participants.

RESULTS

Demographic characteristics of the 47 partici-pants from the 4 datasets are shown in Tables 1–3.

Grounded theory coding methods result in theidentification of a basic social psychological pro-cess that occurs in response to a problem or pat-tern of behavior that is both relevant and prob-lematic for individuals in a given situation.15 Theproblem experienced by the family members inthis study was that of balancing the means andgoals of nutritional care for their terminally ill rel-ative while fulfilling their own personal needsand goals related to the provision of such care.The basic social psychosocial process (BSP) thatemerged in response to this problem was that of“doing what’s best.” “Doing what’s best” repre-sents a process families engaged in to help ensurethat the nutritional care they deemed optimal inorder to achieve their desired goal was receivedby the patient.

The analysis identified that “doing what’sbest” consists of three subprocesses: (1) fightingback; (2) letting nature take its course; and 3) waf-fling. We present a description of these sub-processes with verbatim quotes from the partici-pants.

Fighting back

The cachectic appearance of a dying relativeprompted many family members to petitionhealth care providers to initiate such interven-tions as intravenous therapy, tube-feeding, or to-tal parenteral nutrition (TPN). Families fearedthat the patient would “starve to death” or expe-

FAMILY BELIEFS REGARDING NUTRITIONAL CARE 739

MCCLEMENT ET AL.740

TABLE 1. DEMOGRAPHIC PROFILE OF PATIENTS (N 5 13) AND IN-PATIENTS FAMILY MEMBERS (N 5 13)

Characteristic Patient Family member

Age18–30 — —31–50 01 (7.6%) 6 (46.%)51–65 03 (23%) 3 (23%).65 09 (69.2%) 4 (30.7%)

GenderMale 03 (23%) 1 (7.6%)Female 10 (76.9%) 2 (92.3%)

EducationGrade 8 or less 02 (15.3%) —Some high school 03 (23%) 05 (38.4%)High school diploma 02 (15.3%) 02 (15.3%)Some university 02 (15.3%) 04 (30.7%)University degree 01 (7.6%) 02 (15.3%)Missing data 02 (15.3%) —

Occupationlaborer — —clerical 01 (7.6%) 01 (7.6%)professional/mgmt 01 (7.6%) 05 (38.4%)retired 11 (84.6%) 07 (53.8%)homemaker — —other — —

Income, $10,000/yr — —$11,000–$20,000/yr 02 (15.3%) 01 (7.6%)$21,00–$30,000/yr 02 (15.3%) 02 (15.3%)$31,000–$40,000/yr 02 (15.3%) 02 (15.3%)$41,000–$50,000/yr 02 (15.3%) 02 (15.3%)$51,000–$60,000/yr 01 (7.6%) 03 (23%)$61,000–$70,000/yr 01 (7.6%) 01 (7.6%). $70,000/yr — 01 (7.6%)

rience a painful, hastened death if such measureswere not instituted. Health care providers inter-viewed for the study indicated that family mem-bers often accused them of patient neglect whenprompt action to their requests was not taken:

They, [the family] were somehow at oddswith what I would considered good qualitypalliative care and symptom control andcomfort care. They see it as you are no bet-ter than Jack Kevorkian by doing it this way,by not aggressively feeding.

Such accusations were difficult for health careproviders to hear:

It’s hard . . . You have given 120% for thisperson and the amount of empathy and car-ing you have and I feel above and beyondwhat is expected, and then you are met withcomments likening you to Kevorkian.

In addition to petitioning health care pro-viders, family members would try to get addi-tional calories into the patient by bringing in fa-vorite foods from home, super-sizing the portionsof food ordered from the hospital kitchen, hav-ing food readily available at the bedside and of-fering it frequently. In the extreme, some familymembers would also force feed the patient. Ex-plained one family member:

I know that she doesn’t want to eat, but wehave to try and give her as much as possible.And she just looks at us while we are tryingto feed her with a “are you satisfied now?”look. . . . We had a little dog that wouldn’teat and we continued to force-feed it andforce-feed it until one day it started to eat onits own. It’s like that with her. We kept try-ing to get her to eat, and she knows what weare trying to do, and she doesn’t like it. Whatcan we do? Cancer is like a bulldozer, it goesits own way, but we still have to try.

(continued)

Family members who were “fighting back” didnot view decreased nutritional intake as an in-herent and expected part of the dying process.They felt that decreased intake as opposed to dis-ease progression was largely responsible for thepatient’s declining status, and that the provisionof more calories would halt, or reverse the de-cline Information families received from clini-cians to the contrary was perceived as blatantlycounterintuitive:

The doctor talked to us about the fact that itdidn’t do any good to force food, because itdoesn’t make a difference anyway. Well, ifyou don’t have gas in the car, you aren’t go-ing to go anywhere.

Fighting back behaviors had consequences forpatients. While the intent of family members was

to get more calories into the patient, patients inthis study reported feeling angry and upset bythese actions:

Uhm, my two daughters-in-law, they said,“Mom, you’ve got to eat you’ve got to eat.”And I said, don’t bug me! I can’t eat!”

My wife was up in the air, really up in theair about me not eating. She says she doesn’tnatter, but she sure does! She kept saying,“You got to eat more, you got to eat more.”Q: Did she make you feel like you weren’ttrying?Yes, that was one of the big things.

Letting nature take its course

In contrast to those who were “fighting back,”family members who were “letting nature take its

FAMILY BELIEFS REGARDING NUTRITIONAL CARE 741

Relationship to PatientDaughter 08 (61.5%)Son —Spouse 02 (15.3%)Sibling 01 (7.6%)Parent 01 (7.6%)Other (sister-in-law) 01 (7.6%)

Marital StatusMarried 09 (69%) 10 (76%)Divorced — 01 (7.6%)Widowed 03 (23%) 02 (15.3%)Never married 01 (7.6%) —Common-law — —

EthnicityEuropean 03 (23%) 07 (53.8%)British Isler 05 (38%) 04 (30.7%)French 01 (7.6%) —Asian — —Other 02 (15.3%) —

ReligionCatholic 03 (23%) 05 (38.4%)Protestant 04 (30.7%) 02 (15.3%)Jewish — —Other — 01 (7.6%)No affiliation 03 (23%) 05 (38.4%)

Patient DiagnosisBowel cancer 04 (30.7%) —Cancer of the larynx 03 (23%) —Lung cancer 02 (15.3%) —Brain cancer 01 (7.6%) —Breast cancer 01 (7.6%) —Renal cancer 01 (7.6%) —Stomach cancer 01 (7.6%) —

TABLE 1. DEMOGRAPHIC PROFILE OF PATIENTS (N 5 13) AND IN-PATIENTS FAMILY MEMBERS (N 5 13) (CONTINUED)

Characteristics Patient Family member

course” had shifted their time, energy, and focusaway from nutritional care to other nurturing ac-tivities. This does not imply that they stoppedasking patients if they were hungry or thirsty, orrefrained from assisting them to eat and drink.Family members would still attend to theseneeds, however, the activity around nutrition wasnow driven by the desires of the patient, and arealization by family members that nutritional in-tervention, no matter how aggressive, would notstave off the inevitable:

I said to her, “You eat what you can and ifit’s bothering you, then don’t.” I know Iwould offer it [fluid] to her but she wasn’tresponding to me, or to anybody. Thiswasn’t an issue. This was the end.

Family members who were not focused on feed-ing the patient demonstrated their care in otherways including participating in the patient’s phys-ical care, and simply being present at the bedside:

There were the mouth swabs. We did that alot...it kept her feeling comfortable. I don’tthink it particularly bothered her. It both-ered her when you stuck something in hermouth if she didn’t want it there.

I would want to be there for them in anywayI could. Holding their hand and talking tothem. Just talking to them and being therefor them, that is so important. Like for myhusband, I had to be there. It was helpful forme.

Families also tried to protect their dying rela-tive from those friends and relatives who were inthe “fighting back” mode and still pressuring thepatient to eat, and from the reactions of others tothe patient’s cachectic appearance:

His daughter came last November and shewas forcing him to eat gelatin, and I said,“He doesn’t want it. Let him decide what he

MCCLEMENT ET AL.742

TABLE 2. DEMOGRAPHIC PROFILE OF BEREAVED FAMILY MEMBERS (N 5 10)

Characteristic Bereaved family member

Age18–30 yrs —31–50 yrs 2 (20%)51–65 yrs 5 (50%).65 yrs 3 (30%)

GenderMale 2 (20%)Female 8 (80%)

EducationGrade 8 or less 1 (10%)Some high school 2 (20%)High school diploma 1 (10%)Some university 4 (40%)University degree 2 (20%)

Occupationlaborer —clerical 1 (10%)professional/management 0—retired 8 (80%)home maker —other 1 (10%)

Income, $10,000/yr 1 (10%)$11,000–$20,000/yr 1 (10%)$21,00–$30,000/yr 1 (10%)$31,000–$40,000/yr —$41,000–$50,000/yr 1 (10%)$51,000–$60,000/yr 2 (20%)$61,000–$70,000/yr —$70,000/yr —Declined to answer 4 (40%)

(continued)

wants.” She would say, “Dad you have gotto eat, you have got to eat.” He would be-come agitated, and he would say, “No,” andshe would still say for him to eat to bestrong. At the end, I was watching hisdaughters trying to coax him, and never giv-ing up. And I said, “Good Lord, leave thepoor man alone!” The only thing my hus-band asked me to do was he didn’t wantanyone to see him in the last stages . . . af-ter they operated on him and he was bleed-ing and he couldn’t eat and he was just skinand bones. And that was important to him.He was a very proud man and I didn’t wantto take that away from him.

Families who were letting nature take its courseexpressed the belief that declining intake in foodand fluid was an expected occurrence as death drew

near. They realized that the patient’s decline wasthe result of multiple factors, not just minimal con-sumption of food and fluid. These families also be-lieved that the initiation of interventions designedto augment nutrition or hydration were futile in al-tering the outcome of the patient’s terminal disease.

Letting nature take its course had conse-quences for patients in this study. Specifically, pa-tients indicated that they appreciated not beingcoaxed to eat, and not being made to feel as ifthey were not trying to eat:

They didn’t bug me about it. If I didn’t eat,then it was okay with them. They made thefood, and if I didn’t eat it well there was noissue over it. It wasn’t an issue. They didn’tget excited over it, or bawl me out. Theynever said a word. They understood that Imight have felt like it earlier, but an hour

FAMILY BELIEFS REGARDING NUTRITIONAL CARE 743

Relationship to patientDaughter 3 (30%)Son —Spouse 6 (60%)Sibling —Parent —Other 2 (20%)

Marital statusMarried 3 (30%)Divorced —Widowed 6 (60%)Never married 1 (10%)Common-law —

EthnicityEuropean 3 (30%)British Isler 2 (20%)French 2 (20%)Asian 1 (10%)Other 2 (20%)

ReligionCatholic 5 (50%)Protestant 3 (30%)Jewish —Other 1 (10%)No affiliation 1 (10%)

Patient diagnosisBrain cancer 3 (30%)Colon cancer 3 (30%)Cancer of the kidney 1 (10%)Multiple myeloma 1 (10%)Liver cancer 1 (10%)Breast cancer 1 (10%)

TABLE 2. DEMOGRAPHIC PROFILE BEREAVED FAMILY MEMBERS (N 5 10)(CONTINUED)

Characteristic Bereaved family member

and a half later, I didn’t want it. She under-stood that.

Waffling

Some family members were not just sure whatto do about the declining intake of their dying rel-ative and would vacillate, or waffle betweenfighting back and letting nature take its course:

We would just say [to him] that you wouldget very weak if you don’t eat more than ateaspoon at a time and he would say it justwon’t stay down. Yes, I knew that he wasterminal, but . . . as soon as someone had adifferent idea about how we could get himto eat, I’d say, why not let’s try that!

Family members who were waffling were char-acterized by health care providers as being am-bivalent, acting inconsistently toward the patientand health care team with respect to nutritionalcare:

They feel involved with the care, okay withit, but that might only last for a short periodand then another person might walk in onthat shift, and they’ll [the family member]will say the same thing, “I think he’s thirsty,. . . I think he’s hungry. Then there are thequestions again, like, “Did he eat any break-fast? “Are you going to feed him?”

Family members who were waffling werestruggling to reconcile the tensions between thedisparate positions that declining intake was bothnormal in a dying patient, and yet something theywanted to prevent. They wrestled with the beliefthat the patient’s decline was caused in part todecreased nutritional intake, but also to the rav-ages of their disease. Finally, they were trying toreconcile the competing notions that interven-tions capable of augmenting fluid and food in-take could be both beneficial and burdensome tothe patient:

The main thing is that they are not starvingto death and their stomachs are shrinkingalready so that they would be unable to havea big meal, even if they could eat it any way.So forcing her or enticing her or cajoling her into eating when she was nauseouswouldn’t accomplish anything. But, I thinkthat the only thing that created tension, wasthat we would ask her if there was anythingwe could get for her. Anything else that shewould like to eat.

DISCUSSION

The fighting back stance of families in thisstudy is consonant with literature examining so-cietal attitudes toward cancer, and death and dy-ing. First, despite increased public awareness ofdeath-related issues, we remain largely a deathdenying culture.16,17 Advances in biomedicaltechnology during the latter part of the twentiethcentury have characterized a good death as oneinvolving the fight against disease.18 Burgeoningtechnology makes it possible for dying individu-als to experience what Callahan has described asa “full-court” maximum technological effort tokeep somebody alive.19

Second, the appropriateness of fighting back,even in the face of advanced disease may also becommunicated to the public in more insidious

MCCLEMENT ET AL.744

TABLE 3. DEMOGRAPHIC PROFILE OF HEALTH CARE

PROVIDERS (N 5 11)

Characteristic Health care provider

Age18–30 yrs —31–50 yrs 7 (63.6%)51–65 yrs 4 (36.3%).65 yrs —

GenderMale 5 (45.4%)Female 6 (54.5%)

Marital statusMarried 7 (63.6%)Divorced 1 (9%)Widowed —Never married 2 (18%)Common-law 1 (9%)

Health care provider positionsRepresented in sampleNursing 36.3%Medicine 27.2%Unit assistant 18%Pastoral care 9%Social work 9%

Years of experience working in palliative care1–5 yrs 1 (9%)5–9 yrs 4 (36.3%)10–14 yrs 3 (27.2%)15–20 yrs 2 (18%).20 yrs 1 (9%)

ways. Kristjanson20 has observed that sloganssuch as “Cancer Can Be Beaten” may communi-cate the belief that individuals should fight to getwell and that the “correct” way to die is to con-tinue to struggle toward a cure. Fighting back be-haviours would thus appear to be socially sanc-tioned.

Third, cancer is a disease associated with “evil,”dirt, pain and death,21 and engenders deep fear insociety about the inevitability of death, bodily de-cay, and disintegration.22 Cast in these terms, a de-cision “not to fight back” against cancer would ap-pear to be an almost indefensible one.

Family members in this study who were fight-ing back used a variety of strategies aimed at get-ting increased calories into the patient. These in-cluded such things as monitoring and gauging intake, begging, coaxing, and force-feeding. Sim-ilar behaviors were reported in a recent phe-nomenological study of caregiver perceptions re-garding intake cessation in terminally ill cancerpatients.23 Family members also reported thatthey made special efforts to be in attendance onthe PCU at meal times, to compensate for whatthey perceived to be inadequate nutritional careefforts on the part of the staff. This behavior isconsistent with reports in the literature that fam-ily members may initiate and maintain a “hospi-tal vigil,” if they perceive that the patient is re-ceiving substandard care.24

That family members do evaluate care receivedby the patient has been reported in the empiricalliterature. Kristjanson and colleagues25 docu-mented that family members of palliative cancerpatients look to health care providers to providequality care to the patient. The provision of carethat does not meet family expectations or leavesthem with feelings of dissatisfaction and regretabout the quality of care the patient received isreported to be stressful for family members. Thefinding in this study that some family membersfound the nutritional care of their dying relativewanting is troublesome, because it adds to the ex-isting psychological and physiological changesindividuals are known to experience in responseto the stress of terminal illness in a family mem-ber.26,27

Family members who were letting nature takeits course found other ways to care for the patientthat did not have food as a primary focus. How-ever this does not mean that patients with de-clining intake were seen as being “beyond care.”Rather they appeared to acknowledge the limita-

tions of interventions such as hydration, and tubefeeding in care of the dying. The family behav-iours identified in this study associated with“finding other ways to care” are imbued withconcern and compassion and are commensuratewith those described by Lynn28 as “attending,abiding, not abandoning, and providing safehaven and safe passage” (p. 87).

For many family members in this study, find-ing other ways to care involved participation inthe patient’s physical care. Past research docu-ments the importance of family involvement inthe care of the patient during the terminal phasesof illness.29–31 Participation in care, for those whowish to do so, may afford family members the op-portunity to interact with the patient in highlysatisfying ways in the remaining time that is left.Participation in the patient’s care may help to val-idate the family members’ expertise in this area.Family members frequently assume the respon-sibility of caring for patients with advanced dis-ease in the home prior to admission the hospital,and thus often become very knowledgeable aboutthe patient’s needs, symptoms, and coping prac-tices.32

An important activity identified by familymembers who were “letting nature take itscourse” was that of “being there.” This finding isconsistent with past research documenting thatfamily members have a need to “simply be” withthe terminal cancer patient.33–35 Herth36 sug-gested that as the patient’s health deteriorates,family members’ sense of “doing” may be re-placed with a more general sense of “being” withtheir relative.

The literature suggests that “being there” alsoaffords the patient important opportunities. Intheir descriptive-exploratory study examiningthe most important concerns identified in a sam-ple of terminally ill cancer patients (n 5 74),Geisinger and colleagues37 found that 97% of thesample indicated that it was very important tofeel appreciated by their family; 95% to say good-bye to the people closest to them; and 94% to beable to express their feelings to their family (94%).Arguably, it would be difficult, if not impossible,for terminal patients to accomplish any of thesetasks when family caregivers are focussed exclu-sively on getting the patient to eat.

That health care providers, notably nurses, per-ceive the importance of enabling the family to “bewith the patient” has been consistently docu-mented in a program of descriptive-exploratory

FAMILY BELIEFS REGARDING NUTRITIONAL CARE 745

research aimed at delineating expert nursing be-haviors in care of the dying. A series of compar-ative qualitative studies examining expert mod-els of nursing practice in the care of dying adultsin the community,29 intensive care unit,30 pallia-tive care unit,31 and medical ward,38 all identifiedthe importance of nurses providing family mem-bers with opportunities to spend time with dyingpatients, should they wish to do so.

Weisman’s39 concept of middle-knowledgemay be instructive in understanding the beliefsand behaviours of families who were waffling.Middle knowledge reflects a state of both know-ing and not knowing about the fact that death isnear. “Awareness and denying often run to-gether, crossing over as one emotion or percep-tion gains ascendance and blurs another (p. 45).This description, appears to provide a particu-larly cogent explanation for the ambivalenceseen in family members who were waffling.Thus, while middle knowledge has primarilybeen described with specific reference to pa-tients, it would seem, based on the findings ofthis study, that family members experiencesomething similar.

The findings suggest that family members’ be-haviour regarding nutritional care is influencedby the personal beliefs they hold regarding thepatient’s illness experience.40 These explanatorymodels are subjectively and personally con-structed, and used to help family members copeand make sense of the declining intake they wit-ness in their dying relative.41 Differing beliefs be-tween family members and health care providersoften yields conflicting expectations of treat-ment.41–43 The core process and subprocesses de-scribed here underscores the importance of ex-plicating the particular stance toward nutritionthat family members hold with an aim toward as-sessing similarities and differences betweenhealth care provider and family perspectives.Such activity is a requisite step in the develop-ment of a mutually satisfactory plan of care.44

STRENGTHS AND LIMITATIONS

A strength of this study is that perspectives re-garding nutritional care in terminal illness werederived from key stakeholders: patients, familiesand health care providers. Attention to issues ofrigor as they are understood in qualitative re-search add to the credibility of the findings. Small

sample sizes used in qualitative research oftenraise concerns about the issue of of generaliz-ability. However, unlike in quantitative research,the aim of qualitative work is not to generalize,but to explore the range of issues related to thephenomenon of interest.40

Limitations to this study include the following.First, the data collected for the study was gener-ated from patients, families, and health careproviders who were experiencing care in an ex-emplary palliative care setting. The vast majorityof palliative patients and their family membersare cared for on hospital medical-surgical unitsthat may espouse an ethos that is different fromthat found on a palliative care unit. The utility ofthe model in other care contexts is not clear. Sec-ond, women were over represented in this study.The perspectives of men caring for their anorexiccachectic relatives and partners may differ fromthose of women caregivers. Third, ethnic minori-ties are underrepresented in this sample. The cul-tural relevance of the model that emerged fromthe study is thus unknown.

CONCLUSION

This work has resulted in the generation of apreliminary model related to the ways in whichfamily members of palliative patients with can-cer manage the means and goals of nutritionalcare, while managing their own needs related tothe provision of this care. The delineation of thismodel provides the foundation from which fu-ture description and testing of relationshipsamong variables related to this issue might takeplace, and an empirical stance from which to con-sider intervention studies to alleviate sources ofconflict related to differences in perceptions be-tween patients families, and health care providersabout the role of nutritional intervention in pal-liative cancer care.

ACKNOWLEDGMENTS

Supported by grants from the National CancerInstitute of Canada, Manitoba Health ResearchCouncil, and College of Registered Nurses ofManitoba to the first author, and by a CanadianHealth Services Research foundation (CHSRF)Chair to the second author.

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Address reprint requests to:Susan E. McClement, R.N., Ph.D.

Faculty of NursingUniversity of Manitoba

Office #47589 Curry Place

Winnipeg, Manitoba R3T 2N2Canada

E-mail: susan_mcclement@umanitoba.ca

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