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American Journal of Hospice and Palliative

http://ajh.sagepub.com/content/25/4/318The online version of this article can be found at:

 DOI: 10.1177/1049909108319262

2008 25: 318 originally published online 6 June 2008AM J HOSP PALLIAT CAREMelanie Kaufer, Patricia Murphy, Kris Barker and Anne Mosenthal

Family Satisfaction Following the Death of a Loved One in an Inner City MICU  

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Family Satisfaction Followingthe Death of a Loved One in anInner City MICU

Melanie Kaufer, BA, Patricia Murphy, PhD, APN, FAAN,Kris Barker, MA, and Anne Mosenthal, MD, FACS

perspectives of their loved ones’ care in the ICUdemonstrate an urgent need to improve the qualityof death for patients dying in the ICU.4

Several interventions have been suggested withthe intent of improving the overall quality of end-of-life care. Treece et al1 have outlined a 5-componentintervention that aims to improve the quality of carethat ICU patients and their families receive. These 5aspects are (a) education of ICU clinicians toincrease knowledge and awareness of palliative careand its use in the ICU; (b) ICU clinicians, “localchampions,” to role model and promote a change inattitude regarding end-of-life care; (c) charging ICUnurse and physician directors with the task of iden-tifying and addressing barriers to improving thedelivery of end-of-life care in the ICU; (d) feedbackon any improvement in quality of care; and (e) “sys-tem supports,” such as the provision of palliativecare order forms and pamphlets, made readily avail-able to families. In the internal medicine teachingunits in academic and tertiary care hospitals inOntario, Canada, a 5-year intervention that particu-larly emphasizes the importance of training newphysicians hopes to train physician role models,

Introduction

Each year in the United States, of the more than 2million people who die, 1 in 5 dies in an intensivecare unit (ICU).1 Of the patients who die in hospi-tals, about half are cared for in an ICU within 3 daysof their death and about one third spend a minimumof 10 days in the ICU during their final hospitaliza-tion.2 Mortality rates in the ICU now approach 15%to 20%. As dying and death become more and morecommonplace in ICU settings, satisfaction of thepatient’s family members with their loved one’s careis of increasing interest. Heyland et al3 point outthat because many patients in the ICU are too ill toparticipate in surveys, the only available “con-sumer’s” perspective on their care is by way of theirfamily members. Recent studies on these families’

This study examined family satisfaction with end-of-lifecare in a medical intensive care unit (MICU) beforeand after a palliative care intervention was imple-mented there. This intervention consisted of early com-munication, family meetings, and psychosocial support.Family members of patients who died in the MICU in2005 and 2006 were contacted 2 to 16 months after thedeath of their relatives. Trained interviewers used theFamily Satisfaction with Care Questionnaire to assessthe families’ perceptions of the care given to their fam-ily members. Minorities comprised 77% of the patient

population. Comparison of the levels of family satisfac-tion in the preintervention and postintervention groupsdemonstrated that the intervention significantly improvedthe quality of end-of-life care, particularly throughincreases in family members’ satisfaction with decisionmaking, communication with physicians and nurses,and the death and dying process.

Keywords: quality of care; family satisfaction; pallia-tive care; decision making; communication; minoritypatient population

From New Jersey Medical School, University of Medicine andDentistry of New Jersey, Newark, New Jersey.

Supported by a grant funded by the Aetna Foundation.

Address correspondence to: Patricia Murphy, PhD, APN,UMDNJ-University Hospital G 345, 150 Bergen St, Newark, NJ07101; e-mail: murphypa@umdnj.edu.

American Journal of Hospice& Palliative Medicine®

Volume 25 Number 4August/September 2008 318-325

© 2008 Sage Publications10.1177/1049909108319262

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318

Palliative Care in the ICU

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Family Satisfaction Following the Death of a Loved One / Kaufer et al 319

develop ample system changes, and integrate pallia-tive care services to improve end-of-life care.1 Part ofan intervention detailed by Azoulay et al5 calls for anearly meeting with family members and subsequent,frequent meetings throughout the remainder of theICU stay. Such “family conferences” between fami-lies and members of the ICU team have been sug-gested to improve communication.6 It has also beensuggested that having the same providers involved incare and family meetings will increase satisfaction.7

Provision of simple literature that offers informationabout a patient’s condition and end-of-life care canimprove family members’ understanding of what ishappening to their loved one and, in turn, has beenshown to increase satisfaction even further.8 Itshould also be ensured that surrogate decision mak-ers receive timely, complete, and consistent infor-mation from health care providers.9 As a result ofsuch interventions, it is hoped that family memberswill report a greater satisfaction with the quality oftheir loved one’s care in the ICU and eventual death.

Although many studies have been done in anattempt to gage family’s satisfaction with end-of-lifecare in the ICU, there are too few studies to date thatassess the success of an intervention designed explic-itly to result in increased satisfaction. In other words,though much research has been completed to try touncover what families see as key components of end-of-life care, and many suggestions to improve carehave been made by researchers, there are littledata testing the usefulness and practicality of thesesuggestions.10-15 Furthermore, much of the researchthat has examined family satisfaction with end-of-lifecare has used sample populations that are largelyCaucasian.16,17 Meanwhile, studies have shown thatAfrican Americans are especially at risk of not receiv-ing adequate end-of-life care and of underutilizingpalliative care and hospice services.18-24

The purpose of this study is to see how an inter-vention in a medical ICU (MICU) in an urban uni-versity hospital with a significantly black patientpopulation affected family satisfaction with end-of-life care.

Methods

The Family Satisfaction with Care Questionnaire is avalidated and reliable tool that is used to assess severalaspects of a family’s perspective on their loved one’scare while in the ICU and ultimate death.25 The ques-tionnaire consists of 35 questions that ask about the

treatment of both patients and families by the ICUstaff, the fulfillment of families’ need for informationabout their loved ones’ conditions, and the families’roles as decision makers. Through the assessment ofthe families’ satisfaction in several components oftheir loved ones’ care in the ICU, a better understand-ing of how ICUs have adapted to the needs of theirpatients and families can be obtained.

Beginning in 2006, an intervention with theintention of emphasizing palliative care in theMICU was instituted. A comprehensive chart reviewwas conducted to identify patients who were eligiblefor palliative care. Members from the family supportteam (FST) and the palliative care team (PCT) werealso made readily available to MICU clinicians. TheFST and PCT discussed palliative care patients withthe ICU team on rounds of the unit at least 3 timesper week and held educational initiatives for thesestaff members. Additionally, members of the FSTfacilitated family meetings that included the patient(if possible), family members chosen by the patient,the patient’s physician(s), and other health careproviders involved in the patient’s care. The FSTensured formal documentation in the patient’s chartregarding any decisions made at these family meet-ings about the patient’s care, any concerns of thefamily, and implementation of goals of care, includ-ing end-of-life strategies. Finally, there was ongoingfollow-up of the patient by an FST/PCT advancedpractice nurse, with direct and intensive involve-ment with the patient’s family.

Contact information for the next-of-kin forpatients who died in the 15-bed, closed MICU atUniversity Hospital in Newark, New Jersey, in 2005,2006, and January-June of 2007 was gatheredthrough a chart review. These family members werethen contacted via telephone 2 to 16 months aftertheir loved one’s death and their answers to thequestionnaire were recorded. Accordingly, data from2005 represent families’ satisfaction levels withpreintervention care, whereas data from 2006-2007demonstrate families’ perspectives on care deliveredafter this intervention had begun.

After data collection was complete, data wereanalyzed with SPSS using the Pearson productmoment correlation and χ2 tests.

Results

From January 1, 2005, to December 31, 2005 (thepreintervention period), 188 patients died in the

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MICU. Of these patients, 24 (13%) had noncon-tactable family members due to a lack of contactinformation in their charts. Of the resulting con-tactable group of 164 family members, 43 wereinterviewed, resulting in a response rate of 26%. Atotal of 121 family members were not interviewed:17 refused, 24 had wrong telephone numbers listedin the patients’ charts, 27 had disconnected tele-phone numbers, 20 were unable to answer, 4 did notspeak English, and 29 were otherwise unavailable.From January 1, 2006, to April 30, 2007 (the postin-tervention period), 275 patients died in the MICU.Thirty-six (13%) did not have contact information intheir charts: of the 239 family members who werecontactable, 45 were interviewed, resulting in aresponse rate of 19%. Of the 194 family memberswho were not interviewed, 12 refused, 36 had wrongtelephone numbers listed in the patients’ charts, 51had disconnected telephone numbers, 8 wereunable to answer, 16 did not speak English, 61 wereunavailable, and 10 did not feel ready to talk abouttheir loved ones’ deaths.

In the preintervention period, 77% of patientswhose family members were surveyed were black,19% white, 2% Asian, and 2% Hispanic. In thepostintervention group, 58% of patients whose fam-ily members were surveyed were black, 27% white,2% Asian, 11% Hispanic, and 2% of an unspecifiedethnicity. Nonwhites comprised 77% of the patientpopulation of both groups combined (see Table 1).

There were significant improvements in severalcomponents of the survey. Comparison of the prein-tervention and postintervention years demonstratessignificant differences (P < .05) in specific areas,namely health care provider communication and com-petence, overall satisfaction, accessibility of informa-tion, involvement in decision making, and satisfactionwith the death and dying process (see Table 2).

Discussion

The intervention that was staged in the MICU in thebeginning of 2006 positively influenced family satis-faction in almost all the assessed areas. Additionally,several of these areas displayed significant differ-ences in satisfaction between preintervention andpostintervention years.

Previous studies have documented that talkingto physicians and nurses once a day is often anunmet need in the ICU.25-30 In fact, information wasrated as one of the top 10 needs by family members

in a 1990 study.26 A 1996 qualitative study alsodocumented family members’ need for informationfrom physicians about their loved one’s status.30

Furthermore, studies have shown how caretakers’treatment of families directly affects families’ satis-faction with care. In a 2003 study, family satisfac-tion was shown to be unrelated to the patient’s age,cause of death, or characteristics of the location ofdeath. Rather, family satisfaction was related toeffective communication, good decision making,and respect and compassion demonstrated to boththe family and the patient. Significantly, family sat-isfaction with care was most strongly correlated withhow caretakers treated the family, even more so thanhow they treated the patient. In turn, Heyland et al31

argue that more attention must be paid to providingsupportive care to family members.

In a study conducted in 1995, satisfaction with carewas most strongly associated with a feeling of inclu-sion in the decision-making process, the avoidanceof prolonging of death, explanation and clarificationto the family of their role in the decision-makingprocess, the prevention of family conflict, and the

320 American Journal of Hospice & Palliative Medicine® / Vol. 25, No. 4, August/September 2008

Table 1. Patient Demographics

Number of Patients

Characteristics 2005 2006

AgeUnder 50 15 12Over 50 28 33

RaceBlack 33 26White 8 12Other 2 7

Cause of deathLung cancer 0 2Ameloblastoma 0 1Cerebrovascular accident 0 1Respiratory failure 13 11AIDS 4 0Sepsis 4 13Renal failure 0 2Liver failure 0 2End-stage liver disease 4 1Brain death 3 2Multisystem organ failure 2 1Intercerebral hemorrhage 1 0Cardiac arrest 5 5Subdural hematoma 0 1End-stage renal disease 3 3Congestive heart failure 0 0Unknown 4 0

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Family Satisfaction Following the Death of a Loved One / Kaufer et al 321

increased accessibility of information to the family.32

A 1997 study showed that family members viewedbetter communication and increased accessibility ofinformation to the family as ways to improve end-of-life care.33 A 1998 study revealed that family members

who were not completely satisfied with their lovedones’ care had reported particular criticism about howinformation was communicated to them.34 Finally, a2001 study reported that conflicts perceived byfamily members during a loved one’s hospitalization

Table 2. Family Satisfaction, Preintervention and Postintervention

Satisfied (2005) Satisfied (2006-2007)

Percentage n Percentage n

Emotional supportConcern + caring for patient 76 43 86 44Concern + caring for family 71 43 76 45Consideration of family’s needs 74 43 73 44Emotional support for family 63 43 64 44Spiritual support for family 29 21 43 44Social work staff support 25 16 25 15Pastoral care staff support 27 15 67 7

Symptom managementManagement of pain 74 39 83 29Management of breathlessness 63 38 81 27Management of agitation 54 35 59 27

HCP Communication and competenceCoordination of carea 55 42 75 44Skill and competence of nurses 72 43 89 44Skill and competence of doctors 77 43 73 45Frequency of communication with nursesa 72 43 91 45Frequency of communication with doctorsa 44 43 76 45

Overall satisfactionOverall atmosphere of hospitala 14 43 66 44Atmosphere in waiting room (family room) 10 42 52 23Overall satisfaction with hospital experience 53 43 62 45Overall satisfaction with amount of health carea 44 43 75 44

Accessibility of informationEase of getting information 60 43 71 45Understanding informationa 44 43 73 45Honesty of informationa 56 43 80 45Completeness of informationa 49 43 78 45Consistency of information 65 43 73 45

Involvement in decision makingIncluded in decision-making processa 12 43 69 44Involved at right time? 58 43 70 44Appropriate information to participate in decision making 63 43 73 44Enough time to think about information? 60 42 59 44Feel supported during decision-making process? 49 43 48 44Control over family member’s care 47 43 47 43Right amount of hope that family member would survive? 50 42 58 45Agreement within family about patient’s care? 79 43 69 43Adequate time to have concerns addressed? 57 42 59 44Overall satisfaction with decision-making processa 40 43 70 44

Satisfaction with death and dyingLife prolonged/shortened unnecessarily?a 47 43 72 43Patient’s comfort level 74 43 77 43Supported/abandoned by health care team? 58 43 73 45

Abbreviation: HCP, health care provider.aP < .05.

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most closely related to inadequate communication.35

Suggestions for improvement in communicationhave included ideas for delivering bad news andways to discuss palliative care.

In this study, there were significant increases inlevels of postintervention satisfaction with communi-cation. Satisfaction with the frequency of communi-cation with nurses increased from 72% to 91% (P =.021), and satisfaction with the frequency of com-munication with doctors increased from 44% to 76%(P = .003). Families rank communication highly intheir assessment of care,26 even more so than clinicalskills displayed by health care professionals.36 Inturn, there was a strong correlation between satisfac-tion with the frequency of communication with doc-tors and with the overall hospital experience (r =.818) and between satisfaction with the frequency ofcommunication with nurses and with the overall hos-pital experience (r = .683). The association betweenoverall satisfaction and satisfaction with frequency ofcommunication with health care providers may beamong the most notable findings in this study,because there has been little, if any, evidence in pre-vious studies that improved communication is reallyreflected in measures of family satisfaction.2

Of course, just because a family is satisfied withthe care that a loved one has received does not nec-essarily indicate that the patient was actually givenquality end-of-life care. Attempts to improve fami-lies’ satisfaction with end-of-life care have been lim-ited by an incomplete understanding of what qualitycare means to families and how to gage such care.A recent study attempted to identify what familymembers consider the key elements of end-of-lifecare. This study showed that family members viewhaving trust and confidence in the physicians caringfor their loved ones as an invaluable component ofend-of-life care. This study also showed that nearlythree fourths of family members surveyed said thathonesty of the information given to them by doctorswas extremely important to them. Furthermore, ithas been shown that the most significant need of thefamily is clear, timely, and honest communicationabout their loved one’s condition and care.37,38

Clearly, communication plays a large, even if some-what imprecise, role in family members’ perceptionof quality of care.

The findings of this study also exhibited a strongrelationship between satisfaction with the frequencyof communication with doctors and the overall sat-isfaction with family members’ roles in decision

making (r = .754). A major role of ICU physicians hasbeen cited as giving necessary information to familymembers so that they can participate in the decision-making process for the care of their loved ones.9

These data indicate that greater satisfaction with thefrequency of communication with doctors is a largefactor in overall satisfaction with decision making.

Families also reported greater levels of satisfac-tion with the amount of treatment that their lovedones received while in the MICU postintervention.They were asked, “Some people want everythingdone for their health problems while others do notwant a lot done. How satisfied were you with thelevel or amount of health care your family memberreceived in the hospital?” Satisfaction with this levelof health care significantly increased from 44% to75% (P = .03). Furthermore, the percentage of fam-ilies who believed that their loved ones’ lives werenot prolonged or shortened unnecessarily by theirMICU care significantly increased from 47% prein-tervention to 73% postintervention (P = .016).Previous studies have shown that palliative care con-sultations and family meetings are associated withshorter lengths of ICU stay, particularly withpatients who die during their ICU stay, and it hasbeen suggested that, if such encounters avoid theprolonging of futile or unwanted treatment, theymay also improve the quality of care in theMICU.15,39-41 In the present study, increased com-munication between clinicians and families mayhave had a role increasing satisfaction with the over-all hospital experience, as satisfaction with the fre-quency of communication with physicians correlatesstrongly with the overall hospital experience (r =.705). Consequently, it may be possible that thecomponents of the intervention that consisted ofincreased communication had a role in increasingsatisfaction with the overall hospital experience.

Coordination of care is a vital component ofquality care. Although interdisciplinary care with avariety of caregivers may have many benefits to thepatient, it is challenging to provide the best possiblecommunication between caregivers and the patientand family.42 In particular, the coordination of carebetween palliative care and MICU caregivers isextremely important.15 In the present study, satisfac-tion with coordination of care significantly increasedfrom 55% to 75% (P = .049) postintervention.Because satisfaction with this aspect of care had anotable relationship with consistency of informationgiven to the family (r = .665), it may be possible that

322 American Journal of Hospice & Palliative Medicine® / Vol. 25, No. 4, August/September 2008

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Family Satisfaction Following the Death of a Loved One / Kaufer et al 323

coordination of care plays an important role in giv-ing good information to the families of patients. It isimportant to families to receive information fromdifferent caregivers that is consistent. Families havereported a preference for receiving information froma single physician, instead of from several healthcare providers who may contradict each other.7,9

Increased satisfaction with coordination of care mayhave played a role in satisfaction with the overallhospital experience (r = .744).

In the area of accessibility of information, therewere several significant increases in satisfactionpostintervention. Families’ satisfaction with under-standing of information, honesty of information, andcompleteness of information increased from 44% to73%, 56% to 80%, and 49% to 78%, respectively (P =.005, .015, and .005, respectively). Clarity of theinformation presented to families has previouslybeen shown to be one of the most significant needsof families,37,38 as has honesty of the informa-tion.10,37,38 Incomplete information, reflected in whatfamilies perceive as inadequate communication, isalso seen as a major issue by families.35 Satisfactionwith these components of care dealing with informa-tion receiving may certainly have a relationship withsatisfaction with the overall hospital experience, asdocumented by many studies.16,32,33,37,38

Inclusion in and satisfaction with the decision-making process has been shown to be closely relatedto overall family satisfaction.9,32,43-48 The process ofdecision making can also have a large impact onfamilies’ satisfaction with end-of-life care. In a 2002study, the majority of surrogate decision makers forgravely ill patients preferred to share the responsibil-ity of decision making with physicians. Satisfactionwith the level or amount of health interventionsgiven to the patient, with completeness of informa-tion, and with the amount of support provided alsocorrelated with overall satisfaction with the deci-sion-making experience. Surrogate decision makersappeared least satisfied with the frequency of com-munication with physicians. Overall satisfaction wasnot influenced by whether the patient died duringhis or her ICU stay or not.43 Other studies have doc-umented the correlation between involvement in thedecision-making process and satisfaction with over-all care.9,32,43-48

In the present study, there was a significantincrease in satisfaction with families’ inclusion inthe decision-making process postintervention, from

12% to 69% (P = .013). Furthermore, families’ overallsatisfaction with their roles in the decision-makingprocess significantly increased from 40% to 70%(P = .004). The increased inclusion of families in thedecision-making process had a strong relationshipwith families’ overall satisfaction with the decision-making process (r = .673), as well as with families’overall satisfaction with their hospital experience(r = .636). Additionally, families’ satisfaction with theirroles in the decision-making process was shown tohave a strong correlation with satisfaction with theoverall hospital experience (r = .795). This againconfirms the correlation between overall family sat-isfaction and the decision-making process, as docu-mented in several earlier studies.

Although there were many significant increasesin measures of family satisfaction apparently attrib-utable to the intervention, there were limitationsinherent in this study. The major limitations may be(a) the limited size of the population actually sur-veyed and (b) the low response rates (26% and 19%).The limited sample size may have resulted in ques-tionable statistical findings, whereas the lowresponse rates may limit the generalizability to thepopulation of interest. Additionally, changes in levelsof family satisfaction may have been connected toother factors unrelated to the intervention that tookplace in the MICU. Although the patient populationsfrom both preintervention and postintervention yearswere analyzed in terms of their admitting diagnoses,causes of death, ages, gender, and ethnicities andwere found to be quite similar, other confoundingfactors may have contributed to the differing levels ofsatisfaction between the preintervention and postin-tervention years. Interviews were conducted at vary-ing times after the death of a loved one in the MICU;this may have influenced answers from family mem-bers due to recall bias and other factors.

Future research is needed to determine exactlywhat components of interventions have positive ornegative effects on family satisfaction. Although inter-ventions may increase families’ overall perceptions ofquality of care, it is unknown what aspects of inter-ventions specifically influence each aspect of familysatisfaction. Additionally, more studies should bedone using a much larger, randomized, more hetero-geneous patient population than the one used in thisstudy. Finally, research should be conducted to see ifany cultural or racial disparities exist in family satis-faction levels and effects of interventions on them.

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324 American Journal of Hospice & Palliative Medicine® / Vol. 25, No. 4, August/September 2008

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