couples therapy at end of life

PSYCHO-ONCOLOGY

Psycho-Oncology 12: 620–627 (2003)Published online 10 July 2003 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.746

BRIEF REPORT

COUPLES THERAPY AT END OF LIFE

DAVID C. MOHR*, PATRICIA J. MORAN, CAROLYNN KOHN, STACEY HART, KEITH ARMSTRONG,

RODRIGO DIAS, EMILY BERGSLAND and SUSAN FOLKMAN

University of California, San Francisco, CA, USA

SUMMARY

This study reports on a preliminary uncontrolled study of a treatment for couples in which one partner is diagnosedwith a terminal illness. In this study nine couples, in which one partner was diagnosed with a terminal illness and hadless than 18 months to live, were offered eight sessions of couples therapy. Follow-up data were available for sixcouples. Two patients died during treatment and a third patient moved out of the area prior to completing thefollow-up assessment. Significant decreases were seen in the patients’ distress about dying and the frequency ofpartners’ worry about their partner dying. Improvements were also seen in relationship quality. While the size of thestudy precludes generalizing these findings to a larger population, this study supports further exploration of couplestherapy as a potentially useful adjunct to end of life care. Copyright # 2003 John Wiley & Sons, Ltd.

INTRODUCTION

Researchers have begun to examine the wishesand desires of patients facing end of life (EOL) andtheir families (Singer et al., 1999; Steinhauser et al.,2000a,b). Pain and symptom management areunderstandably central concerns that are part ofroutine care of dying patients (Field and Cassel,1997). However, patients frequently also reportsignificant concerns regarding their loved ones,including strengthening relationships with lovedones, relieving burden on loved ones, and helpingothers. In fact, in the final year of life, concernsabout family can exceed disease-related concerns(Brown et al., 2000). Yet empirical literatureevaluating psychosocial intervention for couplesfacing EOL is conspicuously absent.

Distress among the terminally ill and caregivingpartners (CGPs) is very common, and increases asdeath approaches (Brown et al., 2000). Estimatesof the prevalence of major depressive syndromesamong patients in the later stages of cancer rangefrom 23 to 58% (Breitbart et al., 1995; Chochinov

et al., 1994). Significant anxiety symptoms occur inabout 25% of patients (Brandenberg et al., 1992;Derogatis et al., 1983). Anxiety is frequently areflection of fears about dying (Block, 2001) andhas been termed ‘death anxiety’ (Adelbratt andStrang, 2000; Conte et al., 1982; Hayslip et al.,1991–1992). Depression and anxiety are also highamong CGPs of dying patients (Glasdam et al.,1996; Nijboer et al., 1999). In fact, psychologicaldistress among CGPs is often more severe thanamong patients (Baider et al., 1989; Northouseet al., 2000). Distress is likely to increase for theCGP as well as death approaches (Brown et al.,2000).

Certainly, how patients and CGPs cope asindividuals can influence the level of distress(Pruchno and Resch, 1989; Steele and Fitch,1996; Vitaliano et al., 1990). However, the impactof EOL also depends on the social context. Thepositive impact of ‘supportive social relationships’has gained general acceptance within the scientificcommunity (Broadhead et al., 1983; Helgeson andCohen, 1996; Uchino et al., 1996). Among themany forms of existing social support, it ispatently clear that family relationships have a fargreater emotional intensity than most other socialrelationships (Chibnall et al., 2002; Ell, 1996).

Received 18 February 2003Copyright # 2003 John Wiley & Sons, Ltd. Accepted 27 May 2003

*Correspondence to: VAMC, 4150 Clement Street (116-A),San Francisco CA 94121, USA. E-mail: [email protected]

Within the family, the CGP usually has the largestimpact on well-being of the patient (Bolger et al.,1996; Folkman, 1997; Manne et al., 1999b;Northouse et al., 2000).

Demands on the CGP can be extraordinary.CGPs are frequently called upon to help thepatient both instrumentally and emotionally.Instrumental support may include direct care tothe patient, such as feeding, washing and toileting,managing medications, providing other forms ofphysical care, interacting on the patient’s behalfwith the medical community, maintaining ade-quate income, and managing finances. CGPs alsoprovide emotional support, which includes manyactions not specifically or directly related to theillness or its management, but intended to affectthe patient’s emotional well-being. There is a largescientific literature showing that a CGP’s emo-tional support and good relationship qualityincrease the patient’s well-being, reduce distress,improve coping (Cohen and Syme, 1985; Ell, 1996;Helgeson and Cohen, 1996), and reduce percep-tions of symptom severity (Dar et al., 1992).Alternatively, negative support, in the form ofcriticism, abuse, or neglect, is damaging to thepatient’s well-being, increases distress, and reducesthe patient’s ability to cope effectively (Manne,et al., 2000; Manne, 1999; Manne et al., 1999a,b).Sometimes even support that is well-intended isperceived by the patient as critical, dismissive,demanding, or otherwise unhelpful (Hagedoornet al., 2000).

While support is often scarce, the physical andemotional care required by the patient increasesover time resulting in increased fatigue, healthproblems, isolation and distress among caregivers(Nijboer et al., 1999; Norris and Murrell, 1987).While the caregivers level of emotional distress canoften exceed that of the patient (Baider et al., 1989;Fang et al., 2001), however CGPs are far less likelythan patients to ask for or receive professionalhelp for their distress than are patients (Glasdamet al., 1996).

The well-being of the CGP is critical to thepatient. As demands for instrumental caregivingsupport increase, CGPs are likely to withdrawemotional support (Bolger et al., 1996) as theyexperience greater levels of distress, resentment,and burnout (Nijboer et al., 1999; Thompson et al.,1995; Ybema et al., 2002). Patients can providesupport for CGPs thereby increasing the CGPscapacity and reducing burden. There are at leasttwo ways patients can provide support: by making

an effort to minimize the practical and emotionalimpact of the illness, and by tending to the CGP’ssocio-emotional needs (Fergus et al., 2002).Partners of patients who cope more adaptivelyare more likely to perceive their relationshipspositively and to be less distressed. CGPs experi-ence distress and uncertainty when they are notclear what the patient wants or needs, suggestingthat clear communication skills may be one waythe patient can effectively assist the CGP (Anders-son and Albertsson, 2000). The importance of thistype of support offered by the patient to the CGPshould not be undervalued. In a study of CGPs ofmen with AIDS, the person for whom the CGPwas caring was their main source of support(Soskolne et al., 2000). Thus, the patient is in anideal position to provide the CPG with support.Even when roles in the relationship have shifteddramatically due to advanced illness there is stillroom for reciprocity in the relationship.

In spite of the importance of psychosocial issuesto both members of the couple coping with EOL,the overwhelming evidence that the well-being ofthe dying patient and CGP are intimately andinextricably linked, and despite repeated calls byresearchers for the development of therapies forcouples facing EOL (Halford et al., 2000; Kissaneet al., 1998; Northouse et al., 2000) we areunaware of any studies to date that haveempirically examined the efficacy of couplestherapy for EOL. Treatments have focused exclu-sively on patients with terminal diagnoses (Classenet al., 2001; Fawzy et al., 1990; Moorey et al.,1994; Spiegel et al., 1981) and their CGPs (Carlsonet al., 2000; Toseland et al., 1990, 1995). The aimof this study was to provide preliminary data onthe effectiveness of an 8-week couples intervention.

METHOD

Participants

Patients and their partners were recruited fromthe University of California San Francisco (UCSF)Cancer Center and from the Kaiser PermanenteMedical Care Group (Kaiser) Oncology Clinic inSan Francisco. Inclusion criteria were (1) patienthad cancer with metastatic or unresectable tumors,(2) patient was expected to die within 18 months,and (3) patient had a partner. Exclusion criteriaincluded (1) currently in couples therapy, (2)dementia or other severe cognitive impairments in

COUPLES THERAPY AT END OF LIFE 621

Copyright # 2003 John Wiley & Sons, Ltd. Psycho-Oncology 12: 620–627 (2003)

either the patient or the partner, or (3) seriouspsychopathology including psychotic disorders,unmanaged bipolar disorder, or active substanceabuse. All participants signed informed consentdocuments approved by both UCSF and Kaiser.

Treatment

Therapists met with couples eight times, usuallyin the couple’s home for 50–60min. All sessionswere videotaped. While the treatment was in-tended to be delivered weekly, this was often notfeasible due to increases in symptoms, treatments,or other factors.

This treatment model shares many of the goalscommon to most forms of couples therapy,including reduction of distress in the couple,improving communication, and increasing intimacyto the degree that these are goals of the couple.

Facilitating shifts in meaning. Facilitating shiftsin meaning is an underlying principle that guidesthe therapist’s assessment and intervention. Weconceptualize meaning as being comprised of threecomponents: beliefs, goals, and values (Park andFolkman, 1997). Beliefs can refer to appraisals ofthe world (e.g. benevolent, hostile, fair, predict-able, etc.) (Lerner, 1980), events, or one’s self.Goals may be both general (e.g. pleasure, success,independence) or more specific and immediate(e.g. spending more time with family). Values referto the importance or emotional weighting ascribedto a belief, goal or event. Facing death canchallenge the beliefs, goals, and values of patientsand CPGs, and result in shifts. The goal of therapyis to help patients and CPGs find meaningtogether. In our experience, some discrepanciesin beliefs, goals and values can lead to decreasedintimacy and increased distress. For example, ifone partner believes the illness is terminal, and theother does not, the discrepancy in beliefs is likelyto result in differences in values and goals, whichin turn lead to increased conflict and distress anddecreased intimacy. The therapist attempts tocreate agreement, but when agreement on beliefsis impossible, the therapist helps the couplenegotiate compatible values and goals in light ofdiscrepancies in beliefs.

Increasing intimacy, emotional support and re-ciprocity: As described in the introduction, main-taining intimacy may rest in part on the ability ofthe patient to emotionally support the CGP.Therapists looked for opportunities to fostermutual, reciprocal support.

Facilitating conversations about death and dying:Couples may vary considerably in their acceptanceof death and dying and there is evidence thatavoidance or failure to acknowledge the terminaldiagnosis is associated with increased depression(Chochinov et al., 2000). While therapists did notpush couples to discuss death and dying, they didlook for opportunities to help them discuss theseconcerns.

Children: Couples that have young children athome often have specific concerns about what to sayand when. In addition the dying partner commonlyhas profound sadness at not being able to see thechild grow, and concerns about how the survivingpartner will conduct parenting alone. Helpingcouples discuss these issues and develop plans is animportant part of therapy with these couples.

Therapists

The therapists were three PhD level psycholo-gists and two licensed clinical social workers.Therapists met weekly for group supervision,which included viewing of videotaped sessionsand discussion of cases.

Assessments

Assessments were conducted at baseline and atpost-treatment. All assessment instruments de-scribed below were self-report and were given toboth the patient and CPG unless noted otherwise.

Death anxiety and worrying: We wanted toassess both the cognitive and affective reactions todying or having a partner who is dying. We wereunaware of any measures that are both brief andvalidated on dying patients or their partners. Wetherefore developed two questions that were ratedon a 7-point Likert Scale. The frequency ofthoughts about death was assessed with thequestion ‘In the past week, how often would yousay that you thought or worried about dying?’ Theaffective component was assessed by asking,‘When you have these thoughts or worries aboutdying, how distressed does it make you feel?’Similarly, CPGs were asked how often theythought about their partner dying and how muchdistress resulted from these thoughts.

Depression was measured using the Beck Depres-sion Inventory-II (BDI-II) (Beck et al., 1996). TheBDI-II contains modifications of several somaticitems, making it less confounded than the originalBDI with physical illness (Mohr et al., 1997).

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Quality of life (QOL) was measured using theglobal QOL 10-point Likert ‘smiley face’ Scaleitem from the SF-36 (Ware et al., 1995).

Relationship quality was measured using a briefmeasure that produces two scales. Positive rela-tionship reflects the strength of positive aspects ofthe relationship (e.g. closeness, openness, easy totalk) while negative relationship reflects negativeaspects of the relationship (e.g. conflict, difficultytalking) (Pearlin et al., 1994).

Social support was measured using the PerceivedSpousal Support Scale (Manne et al., 1999b),which produces two subscales: Positive supportand negative support. The Zarit Caregiver Burdenscale (Zarit et al., 1980) was also completed by theCPG only.

Statistical analyses

Because the sample size is so small (six couples)the study was grossly under powered for usualstatistical analyses. A meta-analysis of couplestherapy found effect sizes ranged from 0.52, 0.61for relationship related cognitions, 0.76 forbehaviors, and 0.90 for general assessment ofrelationship (Dunn and Schwebel, 1995). Withsix subjects, our power was very low: power todetect an effect size of 0.52 was 0.18, while powerto detect an effect size of 0.90 was 0.43. Due to thelow power, we have also reported the findings interms of effect-sizes [(M1�M2)/s], and haveidentified findings reaching p50.15 as marginallysignificant. Effect sizes are reported as positive

when they are in a desirable direction, andnegative when in an undesirable direction, regard-less of the metric of the assessment instrument.

RESULTS

Participants

Of the nine couples enrolled, outcome data wereavailable for six. Outcome data were unavailablefor two couples due to the death of the patient. Athird patient moved out of the area beforecompleting the study and could not be contacted.Of the six patients enrolled, four were women, themean age was 49.3 (range 30–70), four wereCaucasian, one was Asian, and one was Hispanic.The mean MMSE was 28 (range=24–30).

Two of the CPGs were women, mean CPG agewas 50.1 (range 29–69), and the ethnicities werethe same as their CPGs’. Three CGPs wereemployed full-time, one was employed part-time,one was retired, and one was on unemployment.The MMSE=30 for all CPGs.

Four of the couples were married and two wereunmarried. Couples had been together an averageof 14.3 years (range 2.2–45.0). Three couples hadchildren living at home.

Individual adjustment

All outcomes are presented in Table 1. Patientsshowed a significant reduction in the distress

Table 1. Outcomes for couples therapy at EOL

Measure Patient CPG

Bsln

mean

(S.D.) Post-Tx

mean

(S.D.) Effect

size

p Bsln

mean

(S.D.) Post-Tx

mean

(S.D.) Effect

size

p

Outcomes

Distress about dying 4.5 (2.65) 3.2 (2.06) 1.31 0.04 5.2 (2.23) 4.0 (2.19) 0.89 0.08

Worry about dying 2.6 (2.30) 2.8 (0.84) �0.08 0.87 3.2 (1.78) 2.6 (1.34) 1.09 0.049

BDI 18.2 (6.61) 11.8 (4.75) 0.77 0.11 11.2 (6.53) 8.5 (8.33) 0.33 0.45

QOL 5.6 (1.30) 6.8 (1.30) 0.92 0.09 6.6 (1.95) 6.0 (1.00) �0.26 0.47

CG Burden (CGP only) 11.7 (2.73) 10.3 (2.58) 0.89 0.08

Relationship variables

Relationship positive 6.0 (2.00) 7.2 (1.10) 1.10 0.049 6.3 (1.21) 7.2 (0.75) 0.72 0.14

Relationship Negative 5.3 (2.16) 5.2 (1.32) 0.10 0.80 5.7 (2.16) 4.5 (2.07) 0.79 0.11

Positive support 34.3 (5.66) 35.1 (6.04) 0.21 0.62 31.0 (8.29) 31.8 (8.04) 0.39 0.38

Negative support 20.7 (4.97) 16.7 (1.75) 0.86 0.09 23.7 (6.25) 21.7 (4.92) 0.71 0.14

Bold=significant changes.Italics=marginally significant changes.



due to dying (ES=1.31, p=0.04) but did notshow any significant change in the amount theyworried about dying (ES=�0.08, p=0.87).CPGs showed marginally significant reductionsin both distress (ES=0.89, p=0.08) and worry(ES=1.09, p=0.05) about their partner dying.The patients’ reduction in BDI-II from a mean of18.2–11.8 was marginally significant (ES=0.77,p=0.11); however there was no significant reduc-tion in the CPG’s BDI-II (ES=0.33, p=0.45).QOL showed marginally significant improvementamong patients (ES=0.92, p=0.09) but notamong CPGs (ES=�0.26, p=0.47).

Relationship quality

Positive relationship showed marginally signifi-cant improvements for patients (ES=1.10,p=0.049) and CPGs (ES=0.72, p=0.14). Therewas a marginally significant reduction in negativerelationship for CPGs (ES=0.79, p=0.11) butno significant change for patients (ES=0.1,p=0.80). There were no significant improvementsin positive social support perceived by either thepatient (ES=0.21 p=0.62) or the CPG(ES=0.39, p=0.38). However, marginally sig-nificant reductions in negative social support werereported by patients (ES=0.86, p=0.09) andCPGs (ES=0.71, p=0.14). Caregiver burdenalso showed a marginally significant decline(ES=0.89, p=0.08).

DISCUSSION

To the best of our knowledge, this paper re-ports on the first uncontrolled outcomes for acouples intervention designed specifically forcouples in which one partner is expected to die.Patients showed a significant reduction in distressabout dying and marginally significant improve-ments in both depression and QOL. The CGPsshowed a significant reduction in the amount theyworried about the death of their partner, and amarginally significant reduction in distress abouttheir partner dying.

Because this study consists of only six cases andno control condition, we present several caveatsbefore further discussion of the data. First, theabsence of a control condition means that wecannot rule out the possibility that we areobserving the natural history of distress and

relationship functioning in couples managingEOL. However, data indicate that the naturalhistory for these variables under these circum-stances is deterioration (Brown et al., 2000),suggesting that natural history is unlikely to beresponsible for the observed improvements. Thesecond problem is the small sample size. Becausesmall sample sizes cannot be representative of thepopulation, they are notoriously unreliable and canchange considerably with the addition of newsubjects. Thus, only very large effect sizes reachsignificance, and even these should be interpretedcautiously. Because such large effect sizes arerequired to reach significance, even greater cautionshould be exercised in the interpretation of non-significant effect sizes. Balancing these shortcom-ings, we will consider significant effect sizes asreasonably good support and marginal effect sizes(0.055 p5 0.15) as worthy of further investiga-tion, since the effect sizes fall well within acceptedfindings in validated couples therapies (Dunn andSchwebel, 1995). Non-significant (p>0.15) changeswill be interpreted as no evidence of support.

We did not see any evidence of improvement indepression or QOL for the partners. Although theCGPs appear to be mildly depressed at baseline,we may have encountered floor effects, in that it isprobably unreasonable and perhaps undesirable toexpect partners of dying patients to have anabsence of depressive symptoms. We also failedto see a reduction in the amount patients thoughtor worried about dying. This may be due toa relatively low score. However, it may also bethat successful treatment results in differentchanges for different people in the amount theythink about dying. For example, among avoidantpatients, an increase in the amount of thoughtgiven to dying may be beneficial, while forruminators a decrease would be desirable. Thus,this frequency of thinking about dying may not bea good marker for treatment efficacy amongpatients as a whole.

The process by which our therapy is presumedto be effective is by increasing intimacy, increasingcommunication, increasing mutual supportiveness,and reducing of negative support. We found somesupport for the hypothesized processes involvingintimacy. Patients reported their relationships totheir partners as significantly more positive andthere was a similar, but only marginally significantfinding for partners.

We had thought that this treatment would helpboth partners become more actively supportive of

D.C. MOHR ET AL.624


each other, however, this hypothesis was notsupported. There was significant improvement inthe patient’s rating of the positive relationship, butthe partners’ ratings of the positive aspects of therelationship improved only marginally. Likewisethe reductions in negative support were reducedonly marginally.

Overall, these findings offer preliminary supportfor further explorations of couples therapy as apotentially helpful adjunctive form of care inmanaging EOL. The findings from this study aremerely suggestive and should be examined morecarefully in a controlled trial. Follow-up post-bereavement assessments with caregiving partnersare also needed to determine whether the couplestherapy during caregiving eased the bereavementprocess. The findings do make clear, however, thatgreat thought needs to be given to the selection ofoutcome variables for couples therapy that focuseson EOL needs. Outcomes that are routinely usedfor treatment studies, such as depression andQOL, may be less appropriate in the context ofEOL, whereas outcomes such as intimacy, distressabout dying or the anticipated loss of the partnermay be more appropriate.

ACKNOWLEDGEMENTS

This work was supported by a grant from the NathanCummings Foundation to Drs Mohr and Folkman.

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couples therapy at end of life

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