Family Conferences in Palliative Care: A Survey of Health Care Providers in France

Accepted Manuscript Family Conferences in Palliative Care: A Survey of Health Care Providers in France Wadih Rhondali, MD Rony Dev, DO Cécile Barbaret, Anne Chirac, Celine FontTruchet, Fabienne Vallet, Eduardo Bruera, MD Marilene Filbet PII:

S0885-3924(14)00221-8

DOI:

10.1016/j.jpainsymman.2014.03.007

Reference:

JPS 8654

To appear in:

Journal of Pain and Symptom Management

Received Date: 3 October 2013 Revised Date:

24 February 2014

Accepted Date: 2 April 2014

Please cite this article as: Rhondali W, Dev R, Barbaret C, Chirac A, Font-Truchet C, Vallet F, Bruera E, Filbet M, Family Conferences in Palliative Care: A Survey of Health Care Providers in France , Journal of Pain and Symptom Management (2014), doi: 10.1016/j.jpainsymman.2014.03.007. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

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Original Article

13-00553R1

Family Conferences in Palliative Care: A Survey of Health Care Providers in France

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Wadih Rhondali, MD, Rony Dev, DO, Cécile Barbaret, Anne Chirac, Celine Font-Truchet, Fabienne Vallet, Eduardo Bruera, MD, and Marilene Filbet

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AU: PROVIDE DEGREES FOR ALL AUTHORS

Department of Palliative Care and Rehabilitation Medicine (W.R., R.D., E.B.), The University of Texas

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M. D. Anderson Cancer Center, Houston, Texas, USA; Department of Palliative Care (W.R., C.B., M.F.), Centre Hospitalier de Lyon-Sud, Pierre Bénite; Laboratoire EA 4129 (W.R.), Santé-Individu-Société, Université Lyon 2, Lyon, France; Psychology Institute (A.C.), Université Lyon 2, Bron, France; Department of Medicine (C.F.-T.), Centre Hospitalier de Bourg-Saint-Maurice, Bourg-Saint-Maurice, France; and Department of Palliative Care (F.V.), Centre Hospitalier William-Morey, Chalon-sur-Saône,

Address correspondence to: Wadih Rhondali, MD

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Department of Palliative Care

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France

Centre Hospitalier de Lyon-Sud, Hospices Civils de Lyon

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165 Chemin du Grand Revoyet 69310 Pierre-Bénite, France

E-mail: [email protected]

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Abstract Context. Family conferences are conducted to assist with end-of-life discussions and discharge planning.

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Objectives. This study describes the current practices of family conferences in palliative care units in France.

Methods. A cross-sectional descriptive survey was sent to each palliative care unit in

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France (N=113). Members of the interdisciplinary health care team (palliative care physician,

the survey were asked to respond.

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nurse, psychologist, and social worker) who were active in each palliative care unit at the time of

Results. Two hundred seventy-six of 452 responses (61%) were obtained from members of the health care team in 91 units (81%). Two hundred seventy-two of 276 health care providers (99%) reported conducting family conferences in their clinical practice. Only 13 participants

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(5%) reported that they followed a structured protocol. The majority of respondents completed the questionnaire: palliative care physicians (n=225; 82%), nurses (n=219; 79%), and psychologists (n=181; 66%). The three primary goals of family conferences were to allow family

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members to express their feelings (n=240; 87%), identify family caregivers (n=233; 84%), and discuss the patient’s plan of care (n=219; 79%). The primary reasons for conducting a family

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conference were: the patient’s illness was terminal (n=216; 78%); family caregivers requested a conference (n=208; 75%); or terminal sedation was required (n=189; 69%). One hundred-six of 452 health care providers (38%) reported that patients were not invited to participate. The primary indications and goals for a family conference were significantly different among the four health care disciplines.

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Conclusion. The majority of health care providers in our study conducted family conferences. However, most of the family conferences had no structured protocol, half of the participants preferred no patient participation, and a significant variation was noted in the

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primary indications and goals among disciplines.

Running head: Family Conferences in Palliative Care

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Accepted for publication: April 2, 2014.

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Key Words: Family conferences, end-of-life discussions, palliative care units

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Introduction Patients with advanced cancer often experience high levels of physical and emotional distress [1]. Family caregivers also experience distress related to the burden of caregiving and

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their loved one’s physical suffering or impending death [2-4]. Several studies have shown that the primary caregiver and other family members of critically ill patients experience significant psychological and physical issues, such as anxiety and sleep disorders, that can lead to increased

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morbidity and mortality [5, 6]. Caregiver distress has been reported to be related to the patient’s degree of physical and emotional distress, the level of social support received by caregivers, and

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whether or not their medical information needs were being met by health care providers [7-9]. End-of-life discussions with the patient and family caregivers have been found to decrease caregiver burden [10-12]. However, because not all family caregivers receive information from the patient’s health care provider, family conferences have been proposed as a means of

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providing family caregivers a safe environment in which to ask questions, obtain medical information needs, and express their emotional distress [13]. Effective communication with patients and their family caregivers is a central component

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of high-quality palliative care. Palliative medicine is a recognized specialty in many countries, and an expanding base of evidence indicates that palliative care improves patients’ quality of

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care [14-16]. Specialized teams can provide palliative care for inpatients and outpatients. Palliative care can be administered to inpatients in palliative care units (PCUs) or in other departments by mobile teams that provide palliative medicine consultations. In France, all academic hospitals are required to have a PCU with specific requirements as defined by French law. Some PCUs are located in independent inpatient treatment centers (e.g., nursing homes), whereas others are integrated into academic, general, or regional hospitals. In the PCU, health

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care providers have championed family conferences as a critical intervention that provides medical information and psychosocial support for patients and family caregivers [10, 17-19]. These meetings can be conducted by a physician, nurse, or social worker, and they have been

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reported to be useful for discussing the goals of care, ascertaining the patient’s and family

caregivers’ preference regarding the location of care, and preparing the family for the death of their loved one [18]. This study describes the current practices of family conferences in PCUs in

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France. Methods

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This study was a cross-sectional, descriptive, 43-question survey that encompassed all PCUs registered in the French National Association for Palliative Care database (N=113). In each designated PCU, we requested that a single representative from each discipline of the interdisciplinary team (IDT)physician, senior nurse, psychologist, and social worker who was

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actively providing care at the time of the surveyto answer the survey questions. This study was submitted to the local institutional review board and received a waiver of documentation of written informed consent for participation as the survey was created for health care providers and

Questionnaire

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did not include any personal or private questions.

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Three palliative care physicians, one psychiatrist, two palliative care nurses, and a social worker developed a questionnaire after reviewing existing published guidelines and examining their own clinical practice of conducting family conferences [18-24]. The final questionnaire included different sections that explored: 1) demographics (age, profession, and palliative care experience); 2) location of work (academic medical center, general hospital, regional hospital); 3) twenty-two questions addressing respondents’ current practice of family conferences,

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including when and where family conferences were held, type of planning involved, whether they were conducted following a standardized protocol, information provided to patients and an invitation for patients to participate, number of health care professionals scheduled to attend the

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family conference, and patient and family caregiver attendees. A final section explored the three main objectives of the family conference (from a list of ten), and the three indications that

necessitated the conference (among a list of nine). Conference participants were invited to write

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any free comments. Participants

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Questionnaires were sent to all directors of PCUs, and the palliative care physician in charge was requested to forward them to the palliative care physician in charge of the unit, the nurse, the psychologist, and the social worker (N=452). The questionnaire was sent by mail on March 1, 2012, along with an explanatory note about the survey and a stamped return envelope.

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Respondents were asked to answer within a month, and a reminder notice was sent after one month. Statistical Analyses

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Categorical variables were expressed as numbers and percentages. We determined whether distributions of values for continuous variables were normal or non-normal using the

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Kolmogorov-Smirnov method. Quantitative variables were expressed as means ± standard deviations when the distribution was normal or as medians and minimums and maximums when the distribution was not normal. Categorical variables were compared using the χ2 test or Fisher's exact test when the conditions of the χ2 test were not met. P<0.05 was considered to be statistically significant. All statistical analyses were performed using SPSS version 17.0 software for Windows (SPSS Inc., Chicago, IL).

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Results Participant Characteristics Two hundred seventy-six of 452 responses (61%) were received from 91 of 113 units

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(81%) (Table 1). Responses were received from 86 of 113 physicians (76%), 91 of 113 nurses (81%), 57 of 113 psychologists (50%), and 42 of 113 social workers (37%). The characteristics of health care providers are presented in Table 1. Participants were predominantly women: 225

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of 276 (82%). Most respondents were working in academic medical centers or general hospitals (203 of 276; 74%).

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Family Conference Practice

Most of the health care providers (272 of 276; 99%) reported conducting family conferences on a regular basis (Table 2). For one hundred-three participants (37%), these conferences occurred as either an interdisciplinary team meeting with different disciplines at the

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same time during the family conference or as a unidisciplinary team (disciplines meeting separately with the family) for 63 health care providers (23%). One hundred and four health care providers (38%) believed that family conferences should be systematically conducted for every

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patient admitted to a PCU, with a significant difference between disciplines: physicians (n=58; 67%), nurses (n=22; 24%), psychologists (n=10; 18%), and social workers (n=14, 33%;

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P<0.001).

The preferred timing of the family conference was dependent on the discipline of the health care provider. Ninety-three health care providers (34%) reported that the meeting needed to be conducted within the first 48 hours after admission. Physicians and nurses were significantly more likely to prefer this time frame than were psychologists and social workers, who preferred to have the family conference after 48 hours after admission (P<0.001).

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The majority of the participants (n=171; 62%) reported conducting family conferences in a dedicated room, and more than half of the participants responded that a palliative care physician (225; 82%), a nurse (219; 79%), and a psychologist (181; 66%) should be required to

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be present during the meetings.

Regarding the organization of a family conference, 225 (82%) of the health care

providers reported that the conference was planned according to the patient’s clinical condition,

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with only 13 (5%) of the health care providers reporting that their institution had a specific protocol or followed published guidelines. The majority of the health care providers (218; 79%)

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believed that they should not limit the number of family members participating in a family conference, including the participation of children less than 18 years of age (n=125; 45%). One hundred twenty-five (45%) of the participants said that the patient is always informed about the family conference, and 106 (38%) reported that patients were not invited to

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participate or informed about the meetings. Most of the palliative health care providers (n=148; 54%) reported that the family conference should be more than 30 minutes but less than one hour. Primary Goals of the Family Conference

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The three main goals reported by palliative health care providers were to allow family members to express their feelings and concerns (n=240; 87%), to identify family caregivers and

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the patient’s proxies (n=233; 84%), and to discuss plans for the patient’s care (n=218; 82%) (Table 3).

Significant differences were noted among the disciplines of the interdisciplinary palliative care team with regard to the goals of the family conference (except for identification of the family caregivers and proxies and allowing family members to express their feelings and concerns.) (P<0.05). One of the main goals of physicians was to discuss plans for patient care.

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Nurses, on the other hand, prioritized explaining palliative care, whereas psychologists believed that allowing family members to express their feelings was the primary goal of the conferences. Main Indications for the Family Conference

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The majority of health care providers reported that the three main indications for a family conference were: terminal illness (n=216; 78%), at the request of the family (n=208; 75%), and when terminal sedation is required (n=189; 69%). Significant variations among disciplines were

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found with regard to family conference indications except when a conference was requested by the patient or the family caregivers. Physicians, nurses, and a psychologist were more likely to

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report that discussing terminal sedation should be an indication for a family conference as opposed to the social worker (P<0.001) (Table 4).

Goals and Indications for the Family Conference, With or Without Patient Participation No differences were noted among health care providers who invited the patient to

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participate in the conference compared with those who did not, with regard to the goals and indications of the family conference. One exception involved preparing for home discharge. Thirty-eight health care providers (37%) who conducted family conferences without patient

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participation versus 30 health care providers (65%) who conducted the meeting with the patient believed that preparing the patient for home discharge was the main goal (P=0.001) (Table 5).

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Discussion

One of the main findings of this study was that the vast majority of palliative care health care providers in France perceive family conferences to be a very important clinical tool that improves patient care. In this study, 99% of palliative care IDT members report conducting family conferences [13, 18, 19, 23, 25-29].

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This study also highlights important variations in the practices of different disciplines within a palliative care IDT concerning the content, participants, and goals of a family conference. A paucity of research exists with regard to family conferences, and most studies are

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narrative, observational, or qualitative [18, 21, 22, 25-28]. To our knowledge, this is the first systematic survey of health care providers that examines what they perceive to be the goals of these meetings. Interestingly, in this survey, the goals of family conferences differed

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considerably among the four disciplines, and in general, physicians’, nurses’, psychologists’, and social workers’ perceived goals were aligned with the goals of their particular profession (i.e.,

identifying the primary family caregiver).

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the physician’s discussing refractory symptoms or terminal sedation versus the social worker’s

One of the most surprising results was the very low percentage of palliative health care providers who prefer to conduct family conferences with the patient participating in the full

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meeting (n= 47; 17%). However, taking into account the percentage of health care providers who prefer that patients partially participate in family conferences, a rate of preference for patient partial or full participation, 170/276 (62%), is comparable to a frequency observed in a study

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conducted in United States, 74/123 (60%) [30]. According to the health care providers, most of the family conference goals did not change significantly whether or not the patient was

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participating.

Why health care providers in France would or would not prefer patient participation in family conferences is not clear. The health care providers may believe that a patient’s presence in the family conference will inhibit emotional expression, which can be therapeutic for family caregivers [13]. The benefits of family conferences for patients and their family caregivers should be researched, including the benefits of meeting the information needs of all participants

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and providing psychological support at the end of life. Another explanation for the low rate of patient participation in family conferences may be related to the high prevalence of delirium among palliative care patients, especially those in the terminal stage [30, 31].

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We also found that the majority of family conferences were performed without any protocol, formal structure, or published guidelines. The absence of a framework in family conferences reportedly results in a greater risk of missed opportunities to provide medical

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information and appropriate support for family caregivers [32]. Hudson et al. proposed that clinical practice guidelines be established as a means of improving family conferences in the

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palliative care setting [18]. Preliminary studies conducted in other countries testing these guidelines have revealed improvements in health care provider meetings and in satisfying patients’ and family members’ information needs [19, 29]. Future research should incorporate these guidelines, as well as assess their effectiveness in the palliative care patient population in

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France in order to determine whether these guidelines are equally beneficial. Our study has some limitations. This was a declarative survey administered as a questionnaire in French PCUs to collect data. This method probably introduced a recruitment

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bias. Indeed, the response rates of nurses and physicians (81% and 76%, respectively) are much higher than are those obtained from psychologists and social workers (50% and 37%,

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respectively). These differences can probably be explained by the fact that several full-time physicians and nurses are usually available in PCUs compared with only one part-time psychologist and one part-time social worker. For professionals in these two disciplines, answering a survey within a specific time frame is probably more challenging, a situation that may explain the lower response rate for psychologists and social workers. However, the overall

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response rate of 61% for all IDT members provides preliminary data on family conference practices in French PCUs. We conclude that health care providers express strong support for family conferences in

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palliative care. However, significant differences were found in the perceived primary reasons for the family conferences among these providers. Unfortunately, we did not measure health care provider satisfaction with the perception of usefulness of family conferences, and future research

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should include this assessment. Finally, formal protocols for IDT member participation and conducting family conferences may assist clinicians. More research is needed to examine the

care providers. Disclosures and Acknowledgments

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benefits of conducting family conferences for patients and their families as well as for the health

No funding was received for this study and the authors declare no conflicts of interest.

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Table 1 Participant characteristics; n=276

• General hospital • Regional hospital • Nursing home

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44 (11) 225 (82) 6 (6)

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86 (31) 91 (33) 57 (21) 42 (15)

72 (26) 131 (47) 24 (9) 50 (18)

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HCP: health care provider; SD: standard deviation.

N (%)

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Participant Characteristics Age: years; mean (SD) Female Experience in palliative care: years; mean (SD) HCP category • Physician • Nurse • Psychologist • Social worker Location of work • Academic medical center

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Table 2 Family conference practices; n=276 Nurses n=91

Psychologists

How do you conduct family conferences? • Interdisciplinary 40 (47)

38 (42)

14 (25)

n=57

Social workers n=42 11 (26)

N (%)

p

103 (37)

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Physicians n=86

Variables

• Unidisciplinary

17 (20)

17 (19)

16 (28)

13 (31)

• Both modalities

29 (34)

36 (40)

27 (28)

18 (43)

77 (85) 81 (89) 57 (63) 33 (36) 13 (14)

41 (72) 37 (65) 39 (68) 20 (35) 9 (16)

29 (69) 24 (57) 21 (50) 21 (50) 3 (7)

49 (54) 21 (23) 21 (23)

32 (56) 10 (18) 15 (26)

3 (3)

8 (9)

2 (4)

0 (0)

71 (83)

71 (78)

47 (82)

36 (86)

12 (14)

12 (13)

8 (14)

6 (14)

22 (24)

10 (18)

14 (33)

<0.001a

104 (38)

• Follows a specific protocol • According to the situation • No specific plan

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• Systematically with 58 (67) every patient Timing of the family conference

63 (23)

110 (40)

0.004a <0.001a 0.045a 0.247a 0.169a

225 (82) 219 (79) 181 (66) 114 (41) 44 (16)

0.004b

171 (62) 45 (16) 59 (21)

SC 25 (61) 10 (24) 6 (15)

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Family conferences: HCP participants 78 (91) • Physician 77 (90) • Nurse 64 (74) • Psychologist 40 (47) • Social worker 19 (22) • Primary physician Location of the family conference (n=275) 65 (76) • Dedicated room 4 (5) • Patient room 17 (20) • No specific location Organization of the family conference

0.090

a

13 (5) 0.532b

225 (82) 38 (14)

Within the first 48 hours after admission

40 (46)

39 (43)

10 (17)

4 (10)

<0.001b

93 (34)

•

After the first 48 hours

3 (4)

7 (8)

5 (9)

14 (33)

0.203a

29 (10)

45 (49)

42 (74)

24 (57)

0.002a

154 (56)

24 (28)

18 (32)

27 (64)

<0.001a

112 (42)

31 (36)

36 (40)

27 (47)

12 (29)

41 (48)

44 (48)

21 (37)

17 (41)

14 (16)

11 (12)

9 (16)

13 (31)

72 (84)

76 (84)

46 (81)

39 (93)

•

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•

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Timing according to the 43 (50) patient’s status Patient is always informed 43 (51) of the conference Patient is invited to the family conference • No • Yes, but only to part of the conference • Yes, to the full conference Documentation of the family conference content a

106 (38) 0.126a

123 (45) 47 (17)

0.405a

233 (84)

chi-squared test; b Fisher’s exact test.

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Psychologists

n=86

n=91

n=57

67 (80)

63 (74)

31 (59)

29 (78)

0.041

77 (90)

78 (92)

34 (64)

29 (74)

<0.001

78 (92)

76 (86)

36 (68)

29 (74)

0.001

79 (92)

75 (86)

44 (82)

35 (83)

0.299

67 (80)

67 (76)

42 (79)

35 (85)

0.688

79 (92)

77 (87)

50 (93)

34 (87)

0.545

38 (44)

34 (41)

20 (37)

27 (64)

0.038

68 (79)

68 (76)

35 (66)

19 (46)

0.001

39 (45)

32 (26)

23 (43)

16 (39)

0.597

29 (34)

32 (37)

11 (20)

12 (30)

0.210

workers n=42

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Briefing on patient health status and treatment of the patient (n=259) • Explain palliative care goals (n=263) • Discuss plans for patient care (n=265) • Identify family members and proxies (n=269) • Identify the family dynamic (n=272) • Allow family members to express their feelings and concerns (n=268) • Preparing for home discharge (n=266) • Preparing family for bereavement (n=269) • Improve communication among family members (n=271) • Avoid conflicts with the team (n=266) a chi-squared test.

Nurses

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•

pa

Social

Physicians

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Variables

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Table 3 Comparison of the main goals of the family conference according to different health care providers, n=276

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Nurses

Psychologists

n=86

n=91

n=57

76 (92)

77 (90)

43 (83)

20 (51)

<0.001

At the request of the family (n=269) At the patient's request (n=270)

72 (85)

60 (71)

45 (82)

31 (76)

0.134

54 (64)

50 (58)

24 (44)

23 (56)

0.138

•

Elusive or avoidant family (n=266) Disagreement between family and HCP (n=258) Disagreement between patient and family (n=262) Disagreement between HCP (n=252) Refractory symptoms (n=265)

47 (55)

43 (51)

18 (33)

12 (32)

0.016

•

65 (77)

44 (55)

23 (42)

11 (28)

<0.001

•

56 (68)

43 (51)

24 (44)

13 (33)

0.002

•

45 (54)

32 (40)

10 (21)

9 (23)

<0.001

•

66 (78)

68 (78)

37 (70)

17 (43)

<0.001

76 (93)

64 (77)

34 (64)

15 (39)

<0.001

•

SC

AC C

EP

Discussion of terminal sedation (n=257) a chi square test.

workers n=42

M AN U

•

For every family with a patient who has a palliative terminal illness (n=263)

TE D

•

pa

Social

Physicians

Variables •

RI PT

Table 4 Comparison of the main indications of the family conference according to different health care providers

19

ACCEPTED MANUSCRIPT

Table 5 Comparison of the main goals and indications among health care providers who conduct family conferences with or without patient participation HCP who conduct family conferences Variables without patient participation n=106

pa

29 (68)

0.547

32 (73)

0.241

37 (82)

0.882

40 (87)

0.589

79 (78)

40 (87)

0.178

90 (88)

42 (93)

0.283

38 (37)

30 (65)

0.001

72 (71)

31 (67)

0.696

38 (37)

20 (44)

0.421

33 (32)

19 (41)

0.291

85 (86)

32 (73)

0.060

79 (78)

34 (76)

0.722

• At the patient's request (n=146)

51 (51)

29 (63)

0.174

• Elusive or avoidant family (n=144)

49 (50)

20 (44)

0.465

• Disagreement between family and HCP

Goals • Brief family on patient health status

71 (72)

• Explain palliative care goals (n=146)

83 (81)

• Discuss plans for patient care (n=146) • Identify family members and proxies

82 (82) 86 (84)

• Identify family functioning (n=148) • Allow family members to express their feelings and concerns (n=148) Prepare for home discharge (n=149)

• •

Prepare family for bereavement (n=148) Improve communication among family members (n=150)

•

Avoid conflicts with the team (n=148)

TE D

•

Indications

• For every family with a family member

EP

who has a palliative terminal illness (n=143) At the request of the family (n=146)

AC C

•

M AN U

(n=149)

SC

and treatment (n=141)

RI PT

HCP who conduct family conferences with patient participation n=47

56 (56)

27 (59)

0.760

53 (54)

25 (54)

0.927

•

(n=146) Disagreement between patient and family (n=145) Disagreement between HCPs (n=136)

36 (40)

19 (42)

0.766

•

Refractory symptoms (n=146)

71 (71)

29 (63)

0.336

•

Discussing terminal sedation (n=141)

74 (78)

30 (65)

0.109

•

a chi-squared

test

20