PSYCHO-ONCOLOGY

Psycho-Oncology 9: 101112 (2000)

INVOLVING FAMILY MEMBERS IN CANCER CARE: FOCUS GROUP CONSIDERATIONS OF PATIENTS AND ONCOLOGICAL PROVIDERS
J. SPEICEa,b,c,*, J. HARKNESSa,d, H. LANERIa,e, R. FRANKELa,c,f, D. ROTERa,g, A.B. KORNBLITHa,h, T. AHLESa,i, E. WINERa,j, S. FLEISHMANa,k, P. LUBERa,l, M. ZEVONa,m, R. McQUELLONa,n, P. TRIEFa,o, J. FINKELa,p, J. SPIRAa,q, D. GREENBERGa,r, J. ROWLANDa,s and J.C. HOLLANDa,t
a

Doctor Patient Communication Consortium, Primary Care Institute, Highland Hospital/Strong Health, Uni6ersity of Rochester School of Medicine and Dentistry, Rochester, NY, USA b Departments of Psychiatry and Medicine, Uni6ersity of Rochester School of Medicine and Dentistry, Rochester, NY, USA c The Primary Care Institute, Highland Hospital, Rochester, NY, USA d Family and Medical Family Therapy Programs, No6a Southeastern Uni6ersity, School of Social and Systemic Studies, FL, USA e Monroe Council on Teen Pregnancy, USA f Uni6ersity of Rochester School of Medicine and Dentistry, Rochester, NY, USA g Department of Health and Policy Management, Johns Hopkins School of Hygiene and Public Health, Baltimore, MD, USA h Department of Pain Medicine and Palliati6e Care and The Cancer Center, Beth Israel Medical Center, NY, USA i Beha6ioral Medicine Section, Department of Psychiatry, Dartmouth Hitchcock Medical Center, Lebanon j Dana Farber Cancer Institute, Boston, MA, USA k Cancer Supporti6e Ser6ices, Beth Israel Medical Center, NY, USA l Cornell Internal Medicine Association, New York Hospital Cornell Medical Center, NY, USA m Roswell Park Cancer Center, Buffalo, NY, USA n Comprehensi6e Cancer Center, Department of Medicine, Wake Forest Uni6ersity of Medicine, NC, USA o Department of Psychiatry, SUNYHealth Science Center, Syracuse, NY, USA p Di6ision of Consultation Liaison Psychiatry and Beha6ioral Medicine, Uni6ersity of North Carolina School of Medicine, Chapel Hill, NC, USA q Na6al Medical Center, Del Mar, CA, USA r Massachusetts General Hospital, Boston, MA, USA s Department of Psychiatry, Georgetown Lombardi Cancer Center, USA t Psychiatry Department, Memorial Sloan Kettering Cancer Center, NY, USA SUMMARY Family members are an integral part of a patients cancer care from the moment the diagnosis is delivered to the conclusion of treatment. Family members bring with them a range of emotional reactions, interpersonal dynamics and expectations for the care the patient receives. This study is part of a multi-institutional project to continue to improve the process of cancer care. In this study, 19 focus groups (11 patient and 8 provider) were conducted concerning issues related to doctorpatient communication in eight cancer centers in the United States. The content of the conversations was analyzed and thematic categories emerged that highlight the various strengths and difficulties associated with family involvement. The focus groups comments support the need for explicit conversations between professional caregivers, patients and their loved ones, in order to negotiate the expectations and needs of each team member. Implications for clinical practice and strategies for working with family members are offered. Copyright 2000 John Wiley & Sons, Ltd.

* Correspondence to: Departments of Psychiatry and Medicine, University of Rochester School of Medicine and Dentistry, Rochester, NY 14642-8409, USA. Tel.: + 1 716 275 4716; fax: + 1 716 271 7706.

Copyright 2000 John Wiley & Sons, Ltd.

Recei6ed 11 January 1999 Accepted 2 No6ember 1999

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Cancer is a family experience. For our purposes, we broadly define family as those persons with a significant interest and role in the patients life, including spouses/partners, parents, siblings and children. Family members often provide meaningful support to the patient and act as the natural caregivers, complementing the skills of the professional healthcare team. They bring with them a range of emotional reactions, interpersonal dynamics, and expectations for the care that their loved one receives. Clearly, when patients, family members and treating providers are in sync, the process of care is enhanced for all. When conflict, anxiety and challenges arise, the process can be difficult for everyone. In the past 30 years, appreciation of the familys impact on the care process has grown at a steadily increasing pace. In 1956, Dyk and Sutherland (Dyk and Sutherland, 1956) found the spouses role instrumental in the patients adaptation to their diagnosis. However, it has only been since the late 1970s that the family, and not just the patient, are considered to be the unit of treatment (Quinn and Herndon, 1986; Holland, 1989; Rait and Lederberg, 1989). In Higginson et al.s (1990) study of palliative care of patients and their family members, the needs of the family were found to sometimes far exceed those of the patient. One limitation of this study is that in the analyses of the data, the actual stories, suggestions and context of comments were lost. Researchers also did not collect direct reports from physicians regarding their experiences of working collaboratively with the patient family system. Whether or not family members contribute positively to the care process is based on the roles they take (Bond, 1982). Recognizing the significance of family involvement, several authors have suggested that the professional team members more actively incorporate family members (Welch-McCaffrey, 1988; Blanchard et al., 1996). The inclusion of friends as part of the care process is also valuable because some patients may not have family available to support them in the illness experience. In these contexts, how a patient defines family and support can be very different than how this is defined by the provider. Such clarifications are essential when deciding on who should be present to hear the delivery of the diagnosis, assist in planning the course of treatment, and remain in contact with the providers. Several studies highlight communication related issues that are important to family involvement.

Kristjanson and Ashcroft (1994) suggested that poor communication is a problem that causes significant distress for cancer patients and their families, second only to unrelieved pain. Three difficulties in the patientfamilyprovider relationship are the concealment of feelings between patients and family members (Rothschild, 1992), barriers to acquiring information; and feelings of helplessness or lack of assertiveness with providers (Bond, 1982; Northouse and Northouse, 1988; Kristjanson and Ashcroft, 1994). Interestingly, Labrecque et al. (1991) found that physicians provide more information, but less emotional support, when patients are accompanied by family members. The researchers acknowledge that their study did not result in any information about the different roles and strategies that patients, family members and physicians use when relating to each other in a family meeting or interaction. Several authors suggest that a family assessment and family meetings are appropriate mechanisms for defining and integrating the needs of patients and their families (Welch-McCaffrey, 1988; Rothschild, 1992; Blanchard et al., 1996). Rothschild (1992) presents a framework using five questions to assess how the family will be affected by the patients illness and how in turn family dynamics will affect the patient. He noted that, although family counseling is generally outside the scope of practice, all physicians who work with cancer patients should be capable of conducting an effective family conference for the purpose of sharing clinical information and assisting the family in addressing their needs. Blanchard et al. (1996) recommend that potential conflicts may be reduced by the use of a family meeting that includes the patient. Notably, each case is different and patients may have preferences for whom they want included. Sardell and Trierweiler (1993) found in a study of 56 cancer patients that patients prefer a high degree of individuality, intimacy and privacy when a cancer diagnosis is being disclosed. Strategies useful to managing the delivery of a cancer diagnosis were neither addressed nor suggested in their study. The utility of such overt conversations also has been noted in the literature on negotiation and the providerpatient relationship. Marcus et al. (1995) suggest that negotiation is a means of developing collaboration, resolving conflict and incorporating the needs and perspectives of all the parties involved in decision-making. Candid

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conversations involving family members, providers and patients offer opportunities for clarification of information, feedback and rapport development that are not afforded by second hand or implicit conversations (Northouse and Northouse, 1988). Rait and Lederberg (1989) further assert that without such explicit conversations, a familys capacity for caregiving may not be accurately assessed and that the problems associated with this can interfere with appropriate clinical care. Family involvement in the care process of cancer patients is well recognized as being important. However, the actual experience of patients and oncology providers with family members during the care process has not been described adequately. The current study presents an analysis of the structured discussions of over 150 patients and providers participating in 19 different focus groups. The purpose of the current study was to describe the sometimes mutual, but often differing, perspectives of patients and providers about the involvement of family members in cancer care. METHODS Sample The participants were recruited from eight institutions of the Cancer and Leukemia-Group B. These institutions included Wake Forest University School of Medicine, Dartmouth Hitchcock Medical Center, Duke University Medical Center, Long Island Jewish Medical Center, Memorial SloanKettering Cancer Center, Roswell Park, State University of New York at Syracuse, and University of North Carolina School of Medicine
Table 1. Demographic summary Demographic

(Frankel et al., 1997). Participants were selected because of their willingness to discuss their experiences of their care and to suggest ways to improve communication between patients and providers in the future. The patient groups consisted of a convenience sample of male and female patients divided into groups such as those by gender and age (e.g. under and over 50 years of age), and those who were either currently in active treatment or were cancer survivors. The 11 patient groups included a total of 96 patients in various stages of cancer treatment. The most frequently occurring cancer was breast cancer (n= 40). Other types of cancers represented included lymphoma, ovarian, prostate, lung, and leukemia. Of the eight provider groups, five were made up of physicians only, two groups included both registered nurses (RNs) and physicians assistants, and one included only RNs. Among the 58 providers, medical oncologists were most represented, followed by RNs, physicians assistants, surgical oncologists and nurse practitioners. See Table 1 for a demographic summary. Analysis A qualitative content and thematic analysis was used to study patients and providers perspectives about the inclusion of family members in cancer care. Comments were collected from focus groups that were approximately 90 min in length and used two similarly structured sets of questions for providers and patients. The family-related questions that guided the focus group facilitators are shown in Table 2. The focus groups were audiotaped and transcribed verbatim. Each transcript was then

Patients n = 96 11 n =71 (74%) n =25 (26%) 2884 56.64 n =79 (82%)a n = 9 (9%)a n =64 (66%) N/A

Providers n = 58 8 n = 25 (43%)a n = 16 (27%)a 2563 39.85 n =31 (53%) n =10 (17%)a N/A Mean: 9.2 Range: 135

Total number of groups Female participants Male participants Age range of participants (years) Mean age of participants (years) Ethnicity of participants; white, not Hispanic Ethnicity of participants; in other ethnic groups Patient participants residing with a spouse, children, or other family member Years provider-participants worked primarily with cancer patients (mean, range)

Percentages do not total 100% because of missing demographic forms.

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Table 2. Family oriented focus group questions Provider focus group questions

J. SPEICE ET AL.

Patient focus group questions Does your doctor (or member of the doctors staff) regularly communicate with your family, friends or others who are involved in your treatment? Do you feel this helps you go through the treatment process? Does your doctor allow other family members to attend appointments? If so, is this helpful to you or not? In what ways?

Tell me about your approach to communicating with support people. Do you encourage them to attend regular appointments? If so, how does this affect your relationship with the patient? How do you communicate bad news to familyabout the patients condition, death, or treatment failure? Do you prefer to do this in person, or is conveying the news by telephone acceptable to you? What non-verbal techniques do you use? How do you respond when a caregiver thanks you for all you have done or blames you when a patient has just died? Do you encourage or discourage caregivers from being involved in such processes as viewing the body or speaking with other providers?

How do you think support people could be better prepared to participate more effectively in the care of loved ones? Is this an area in which physician training should be offered?

Do you regularly count on a family member or good friend to help you out with your medical visits? What role does this person play in your medical care? If another person attends medical visits with you, how does that affect your relationship with the doctor? Do you feel that there is or could be a point when this person would be involved more than you want just too much? Can you think of when that might occur? How could providers do a better job of dealing with family members?

In what ways could family members communicate more effectively with doctors?

divided into thought units (n =1002) a unit of conversation that contains a complete assertion, idea or narrative. Family-related thought units were initially identified by examining the coding categories for the original study (Frankel et al., 1997). They included categories such as the Presence of Family and Friends and Importance of Support Systems. The data were then reduced by doing a word search through each transcript seeking only those comments that included family-related words, such as family, wife, husband, spouse, children, mother, father, and excluding those that were about friends or general support systems. The selected comments (n=239) were further categorized according to whether they were made by patients or by providers. Finally, the analysis was restricted to comments pertaining to direct interactions between providers and patients and/or family members. Excluded from the patient group were peripheral comments about patients and family members interactions with one another without a provider present. From the provider group, we excluded general comments that referenced family but did not indicate any

direct contact with a family member, such as I really encourage them (patients) to write down questions whenever possible or have their family members write them down. The final data set (total n= 179) used in this study included 81 patient comments and 98 provider comments. Our analysis team (Harkness, Laneri and Speice) jointly identified preliminary themes found in the 179 comments. During coding meetings, the themes were revised and refined until agreement was reached about major coding categories and subcategories. To achieve consistency of coding, each researcher read through a sample of thought units (the first 10 pages of comments from each group) and assigned each a code; the team then reviewed the code assignments together until a consensus was reached and coding guidelines were developed. Based on the revised coding scheme, each member read through the entire data set and assigned each thought unit a code. Interrater reliability for provider comments was 86% and interrater reliability for patient comments was 91%. During subsequent coding meetings, coding disagreements were reviewed to reach final consensus.

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RESULTS The coding categories, percentages and number of comments made by providers and patients for each category are listed in Table 3. Providers and patients made a similar number of comments in the categories of Creating a Welcoming Environment, Integrating Family Needs and Families as Resources for Emotional Support. However, significant divergence was noted in the number of comments made about the Difficulties in Family Dynamics, even though these topics were never directly addressed in the focus group questions; provider comments in these areas far outnumbered those made by patients. The coding categories and comments are discussed in detail below. Creating a welcoming en6ironment Patient and provider groups both acknowledged the importance of taking certain measures towards including family members in the care process. Patients emphasized the importance of inviting family members to come into the exam room to be a part of the team. They appreciated when providers would give out their personal numbers for availability and accessibility. They valued the efforts that providers made to get to know family members by name and ask about those who were not present. One patient remembered the welcoming her family members received:
They (providers) have always been very accessible as far as, have the family in. There are times when you are in those little clinic rooms and it feels like a Marx Brothers movie. How many people can we fit in here with little note pads and no one ever questions or says, Two of you will have to leave. We do not have any room and you can get the information later.
Table 3. Summary of comments by category Code category

They have never kept any information from me or my family and that is very good.

Providers found certain elements of creating a welcoming environment inherently important to patient care. As mentioned with patient groups, providers also acknowledged that learning family members names and giving a number where they could be contacted, as well as showing empathy and physical contact were integral parts of the welcoming process. Several providers recommended inviting any family members present in the waiting room into the exam room. One provider gave his opinion of this welcoming strategy:
I ask if there is someone else with the patient who they would feel comfortable with while this (the diagnosis) is being discussed with them. I bring them into the room so they have some other person besides me, who they are seeing for the first time, to share their emotions, or thoughts, or whatever comes to mind.

Integrating family needs Including family members in the treatment process also involves identifying individual family members needs. Some family members are geographically distant or work during clinic hours and are unable to accompany the patient to office visits. Others vary in their emotional response and desire for involvement. Patients recommended the importance of finding alternate means of communication to solely in-person hospital or office visits. Several patients stated that having telephone and e-mail information enabled family members to get in touch with providers directly to address questions or concerns. This also encouraged them to become more active in the care process and avoid potential

Provider comments (n =117) % n 16 21 26 54

Patient comments (n =95) % 22 12 36 7 n 27 15 44 9

Creating a welcoming environment (e.g. space, availability) Integrating family needs (e.g. differences in access, emotional needs) Family as resource (e.g. support, information) Difficulties in family dynamics (e.g. family conflict, communication problems)

14 18 22 46

Patient percentages do not total 100% because of outlier comments that did not meet the categorys criteria.

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feelings of exclusion. One patient commented on the value of providers having patience with individual family members who have special needs:
My doctor has been very good about talking with my family. I have had several siblings die of cancer and I am number four in the family. So, of course, the rest of my family is very concerned and somebody comes in with me every time. The doctor answers every question they have even if we ask a couple of times, he will still answer it the second time.

One provider expressed his appreciation for family involvement:

I find that it is important to try and include if the person has someone with them that they are close to, a relative, in on the discussion. Some patients will hang on the first couple of words you have said and they will miss the whole context of the entire conversation. The more people that are with them, the more that they will be able to go back (home) to discuss it.

Providers similarly noted the importance of talking with family members about their understanding of the illness, what their expectations are in relation to the diagnosis, and ensuring that those family members who were not present for office visits felt included. One provider stated that she viewed the family as the unit of treatment. Providers also acknowledged the importance of attending to the family members emotional needs as expressed in the following quote:
I find just sitting there with the family and just providing some support and letting them express their fears or let them cry or whatever, that seems to help. You really cannot take away the disappointment and sometimes there just is not much you can say, just being there, or just being quiet is enough. . . sometimes I find in those situations saying nothing is better than saying something.

Second, family members often serve as a resource for comfort and emotional support to the patient. One patient commented on how good it felt to hear her family address the cancer as a we experience:
I have a sister and sister-in-law that have been so supportive of me. It was they that made a statement when I was diagnosed. They said, Well, you do not have a cancer, we have a cancer, and we will work through it. And now, we are in treatment. I like that they participate and do not feel unwanted.

Family as resources There were three sub-themes within the Family as Resources category. First, family members were appreciated for their ability to function as an extra set of ears. Patients commented that family were often helpful in asking questions, recalling details, gathering important information, taking notes, and reporting symptoms and behaviors that patients may have forgotten or are hesitant to share. One patient remarked:
I think it is very important to bring somebody, especially when the doctor gives so much information. If I miss something, my husband remembers it and when we are at home we recall, Well, what did he say about this? I understand this. I understand that. We exchange information that is important. It is two people listening like one person.

Providers also acknowledged that family members served an important role in the emotional well-being of the patient. Providers noted that some family members request time alone with the patient to comfort them privately after a diagnosis has been given. Several providers recognized the impact that family has and the emotional support that is often needed, particularly at the time when bad news is delivered. One provider recalled:
If there is a family member with them, usually it is the family member that will console them. I do not say, I will come back when you stop crying, or Stop crying. We have to talk about this. I just sit there quietly and the situation generally resolves itself.

Providers recognized that it is difficult for patients to recall and store details when they are trying to deal with the impact of the diagnosis.

Third, family members serve as a resource for patients making critical decisions about treatment. They may affirm or challenge decisions about a treatment protocol. Sometimes they even have to prompt the patient to get treatment. One woman stated that she just could not emotionally manage making the decision about which protocol to participate in, and asked her family member to select it for her. Another patient stated that her daughter was a pathologist and knew about treatment protocols, recommending some and dismissing others. One patient recalled that her children told the physician that their mother would prefer to not be treated with anything that would

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cause her hair to fall out; her children knew the significance of appearance to the patient and advocated for other available treatment options. Several providers acknowledged the significant degree of influence that family has on what treatment protocol the patient will select. It was recommended that the family be involved in the entire decision-making process so that all information is heard by those who will be integral to the choice. One provider especially acknowledged the strength of family input:
. . . families have a very strong input in the decisionmaking by the patient. So if the families are negative, it is very unlikely that the patient will go on with the study. . . The family and friends influence is unquestionably very strong.

Difficulties and strategies with family members Patients and providers acknowledged that although there were benefits to family member involvement, there were also drawbacks. Each group had different perspectives on how these dysfunctional dynamics were triggered and who was mostly responsible for them. Providers expressed the greatest difficulty with situations in which information about the illness was being purposefully concealed from another. In some instances, patients may not want certain members to know their diagnosis, and in other cases family members wanted to keep the diagnosis a secret from the patient. One provider described the problem:
Then there is (the situation) when the family knows (about the illness) and they tell you, Dont tell the patient, and you think very well that the patient could handle it. They are protecting the patient and in those kinds of patients, they are really doing them a tremendous disservice by not telling them. They have an opportunity to do certain things at the end of their life which is being stolen from them because they do not know the end is coming. They are not being told the severity and then who do you respect? The patient or that patients family?

get the results of her test and heard the diagnosis first. However, patients also reported that many times providers did not seem to know how to manage family involvement or even acknowledge them as part of the patients experience. Many providers mentioned strategies they found useful when facing difficulties with family dynamics. For example, providers suggested that one should: (1) ask in advance how much information the patient wants the family to know, (2) have interactions with the patient and family together, as much as possible, (3) provide the same information to the patient and family, (4) openly state that you cannot treat the patient as long as the family will not allow the patient to know about his or her illness, (5) remind the family that the patient is the first priority, and (6) ask the family how they would feel if information was kept from them.
Sometimes I will facilitate the fear and anxiety on the familys part by dealing with them a little bit and asking them the whys of why they do not want the patient to know. I talk to them about the possibility that they are not robbing but denying the member who has the illness the opportunity of being able to do some things that might be possible if they had certain information. In fact, your allegiance or your practice is geared toward the patient, although the family is certainly a big, big part of it. You owe it to the patient (to provide) good care and that involves disclosure.

Patients acknowledged that sometimes family members would go behind their backs to give and receive information from the providers. One patient recalled how it even happened right in front of her, describing her husband and physician huddled together across the room in quiet conversation. Another patient reported feeling left out when her father, a physician, called the hospital to

Another problem in working with family members is associated with dysfunctional family dynamics. These dynamics exist prior to the illness and may become exacerbated by the stress of a cancer diagnosis. Some providers stated how uncomfortable they felt being in the middle of destructive family dynamics that absorbed time they would have rather spent on the patients treatment plan. Also difficult were family members who ask repeatedly for second opinions and who push for a more definitive outcome than is actually known. One provider noted that family members can quite easily not fully understand the information being presented and then confuse the patient and each other. Another provider observed that a family member who is present may not necessarily be an emotional support to the patient. A few providers mentioned that lack of training in breaking bad news to the family during their medical education at times played a large part in how these struggles were mishandled.

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Patients offered a different perspective on how problematic family dynamics affected the treatment process noting providers ineffectual communication as one potential cause for problems in doctorpatient communication. An example of this is the provider who communicated with one family member, and later learned that the particular family member was not the person the patient would have selected to be his or her advocate. A patient described the behind-the-scenes miscommunication and conflict that occurred between her husband, sister and physician:
I had a situation where I had a passive husband and a very proactive sister. I found the doctor always zeroing in on my husband and wanting my husband to call. She (my sister) felt very slighted that no one was paying attention to her. She was sort of my patient advocate, actually. I guess they could not understand why my husband was not making the calls. Maybe my doctors needed to designate one person. If they would have said, If your family is going to be active in calling, who will I be communicating with? In that case I would have said, my sister, but I was not sophisticated either. I was out of it, so all this drama was going on and I did not know about it.

highlights the importance of explicitly individual needs that may not be known by the professional care team otherwise result in frustrating or encounters.

identifying intuitively and might conflictual

I had told him (the diagnosing physician) very clearly that my wifes first husband had died of testicular cancer after they were married a year. . . so I said this is extremely sensitive. Lets talk about how to handle it with my wife before doing so. Well, he took a very mechanical approach to say the least. . . And in fact when his secretary called me to find out if I had made an appointment with the surgeon, my wife answered the phone and said Well why would he have to do that? And it was the secretary who told my wife.

In managing each of these individual variations, conversations with the patient and family members regarding their expectations for the sharing of the diagnosis and treatment information will hopefully reduce potential conflicts. In addition, it will also demonstrate respect for the familys cultural beliefs and practices. DISCUSSION Clearly, family members are an integral and vital part of the care process, as affirmed from the perspectives of both patients and providers in our focus groups. Similarities were found between the groups in most thematic categories. For example, both providers and patients found family members served an important function in the gathering and sharing of information, decision-making process and in giving patients the necessary emotional support. Of interest are the range of viewpoints shared by patients and providers on how and when a diagnosis should be given. Although a few patients wanted to hear their diagnosis from the family rather than their physician, most felt that family should at least be right there alongside them when the news is given. A select few patients wanted to tell the family their diagnosis themselves, in their own time and in their own way. Providers also held strong viewpoints on how and when a diagnosis should be given, with the majority of providers preferring to tell the patient with some family support present. However, sometimes a familys preference may compromise the personal ethics and beliefs of the provider. Integrating the complex needs of the patient and family

Providers recommended several strategies to reduce potential conflicts that can arise from dysfunctional family dynamics and interfere with the treatment process: (1) encourage the family to think of what the patient wants, (2) if a family member is upsetting the patient, take that family member out of the room and inform them of the inappropriateness of their behavior and remind them of the goal of making the patient comfortable, and (3) assign a single family member to call and check in on the patients progress. Indi6idual 6ariation One provider commented that the roles of the family or people that accompany (the patient) vary, just like each patient varies. In delivering the diagnosis, one patient preferred that providers tell the family first and then allow the family to deliver the diagnosis to the patient. However, another patient remarked that providers should tell the patient first and then let the patient tell the family. One provider stated that the delivery of the diagnosis directly to the patient may be inappropriate by some cultural standards and that some families prefer the patient remain ignorant of the severity of their illness. The comment below

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members with the skills and practice styles of the oncology team can be difficult at times. Providers made far more comments (46 vs. 7) than patients with respect to the difficulties associated with involving family members. Perhaps these differences may be a reflection of the lack of training in delivering bad news and managing family dynamics that some providers reported. In Baile et al.s (1997) study of teaching communication skills to oncologists, doctors feelings of anger and an inability to deal with patients and family members were oftentimes affected by their inability to communicate effectively. With communication skills training, these areas improved. For this reason, it is important that medical education include training in communication and education on family dynamics. For their part, one reason why patients made fewer comments about problems associated with family involvement may be because they are used to dealing with their own family dynamics. They are used to their chaotic response to a stressor. In some families, it is the person who is ill who can calm the discontent. However, when this individual is sick, it is often up to the other family members to do it themselves. Families struggle with new roles and responsibilities and providers get to see them at their best and at their worst. It can be stressful to a provider to sit back patiently and watch as the family tries desperately to regain or establish balance and structure in their system, and many families need help to do this. The contrasting comments about problems in doctorpatientfamily communication, suggest that there is no one best method of dealing with patients and families. Direct conversations between all parties are needed to articulate the preferences of each member and to negotiate differences in order to develop a clear, coordinated treatment plan.

The brief self-assessment in Table 4 was developed based upon our analysis of participants comments about interactions with family members of cancer patients. No overall scoring for these questions is needed, rather they provide an opportunity for oncology providers to reflect on their current practice of working with families. The questions are intended to create an awareness of issues that might improve interactions with a patients family members throughout the patients care. Family meetings Increasingly, time pressures are limiting accessibility and threatening the length of time providers can spend building relationships and attending to complex family dynamics. However, family members will continue to accompany patients to their appointments, and continue to have expectations for communicating with their loved ones providers, as well as ideas about how they would like to be involved in care. Incorporating routine family meetings at the start of care can provide the forum to discuss patients and family members needs as well as provider practice styles. In addition, family meetings conducted early in the care process may identify problematic family dynamics, giving the professional care team advance notice of potential conflicts. Often, family members need guidance about how to best support the patient through the care process. As one nurse stated:
Because theyre all grasping and sometimes theyre so disorganized, like youre saying that everybody is trying to do their part, but theyre not working together as a unit, to make it even better and then you could just be this little facilitator in there dropping the hints and making suggestions.

Implications for clinical practice Health care providers rarely have the opportunity to step back and assess their own expectations and level of comfort or skill with involving family members in the care process. As a first step in developing a care plan with family members, providers might benefit from completing a selfassessment of their own personal and professional boundaries, as well as areas of growth and limitations in working with families.

In Table 5, we propose questions to guide discussions with patients and their family members that could serve as a starting point for conversations to bring clarity about expectations for roles, information sharing, and needs for conflict resolution. Talking with the patient about family involvement is important, both with and without family members present. A provider may wish to pose the questions to the patient alone first, and then ask them again in the presence of the family. This two-step approach may help the patient express preferences, such as limits around the disclosure of information, without feeling constrained

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Table 4. Provider self-assessment for working with family members Often Creating a welcoming environment I encourage patients to include family members at appointments I often know family members names and remember details about their lives I rely on other team members to deal with family members Integrating family members needs I ask patients about their preferences for including family members in the treatment course I ask family members about their preferences for being included in the treatment course I often request family meetings to discuss delivery of news, treatment options, or recurrence I encourage family members to call anytime with questions or concerns, even those who live at a distance I try to identify and respond to the individual needs of family members I find the needs of family members too overwhelming and rely on team colleagues to work with family members Managing difficult family dynamics I encourage all family members to contact me with questions or concerns I try to appoint one member of the family to be the spokesperson for the rest of the family I am comfortable setting appropriate limits with family members I feel I have the requisite skills to deal with the problems that emerge between patients, family members and professionals I have a family-oriented mental health colleague on my team to whom I routinely refer families when they are experiencing distress, or with whom I consult when Im frustrated in dealing with patient/family dynamics Sometimes Rarely

by family members who are in the room. This two-stage process can also provide clues for the provider about potential family relationship difficulties. Once the provider has an understanding of what the patients preferences are for family involvement, he or she then can proceed to facilitate a family meeting, which often occurs at this first appointment. If scheduled at another time, the meeting is best conducted during a mutually agreed upon time so that all key family members, supports and professionals can be present and prepared to address concerns. Establishing a relationship with the family and negotiating around specific concerns can be accomplished in a brief amount of time when all members have been previously notified and are aware of the agenda. Family meetings will often follow the five phases of a family meeting developed by McDaniel et al. (1989): socializing/welcoming; setting goals; discussing the problem/issue(s), identifying resources; and establishing a plan. Doherty and Baird (1983)

and McDaniel et al. (1992) recommend the involvement of a facilitator with family systems training, in particular for work with distressed families, or those with a history of unresolved conflict and dysfunctional relationships that appear to be compromising the patients care. In addition, they suggest that collaboration with a family therapist in caring for these highly distressed families can help to relieve medical and nursing providers from managing these difficult dynamics alone. In addition to addressing the open-ended questions about family involvement in Table 5, the family meeting is the place to negotiate practical matters, such as how information will be distributed among family members, and what caregiving roles and responsibilities are needed to avoid miscommunication or unnecessary conflict down the road. Family member involvement may shift and change throughout the care process and periodic check-ins with the patient, family members, and other professionals about how they all

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FAMILY INVOLVEMENT IN CANCER CARE Table 5. Questions for patients and family members about expectations for care Question for patients How would you like your family to be included in your care? (For example: Attending appointments? Being a second set of ears? Providing emotional support? Involved in decision-making?) How would you like me to communicate with your family members? (For example: Talk directly with them only when youre present? Available to answer questions or concerns via the phone or e-mail or in person? Prefer that I not disclose any information about you, your disease, or treatment? Prefer that I talk with only one or a few select family members?) What important things should I know about how you and your family members relate with each other? (For example: what ways do you support each other? How do you handle difficult times? Are there things that you expect to be particularly difficult for you or your family about this experience?) Questions for Family Members (After obtaining patients permission) How would you like to be involved in your loved ones care? How would you like us to communicate with each other? What other experiences have you had dealing with health care professionals? Tell me some of the difficulties and positive aspects of these experiences What important things should I know about how you and your family members relate with each other? (For example: What ways do you support each other? How do you handle difficult times? What barriers to communication do you experience?)

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process that were not represented in this study. In future research, incorporating family members direct reports of experiences with patients and health care providers will be essential. In addition, because participants were affiliated with academic cancer centers, their perspectives may be different than those patients and providers from non-academic cancer centers. Furthermore, participants in this study were not randomly selected, but were recruited by colleagues who were members of the research team for their willingness to discuss their experiences. Thus, particular biases cannot be identified and the results may not be generalizable to all cancer patients or providers. However, the data represent a rich overview of patients and providers discussing experiences of involving family members in care. Future research should incorporate a broader mix of participant recruitment. The focus group format naturally resulted in a wide range of responses between groups. Variation in facilitation and frequency of participant comments was not controlled. Some participants were more active than others and some topics may have been probed in more depth than others in particular groups. However, for this exploratory study, the focus group format offered a breadth and richness of data not afforded by other methodologies. CONCLUSION We recommend that oncology providers talk candidly with patients about how to best integrate family members into the care process as a matter of course. Furthermore, we suggest using a family meeting to address information sharing and roles as an important intervention to help family members structure themselves in a time of crisis and decrease potential conflicts for professional caregivers. Providers may benefit from communication skills training, as well as assessing their own comfort and skill level for working with families. However, individual oncology providers need not shoulder all the responsibility for care of the emotional as well as physical needs of their patients and patients families. Enlisting the support of other colleagues, including mental health professionals with specific skills for working with families, will help to reduce provider frustration and facilitate interventions with families to remove barriers to effective treatment.

are functioning together as a team are essential. Renegotiation of the boundaries and roles may be required, especially if there is a recurrence of cancer and/or other life events have occurred. Limitations This study was not designed specifically to collect and analyze family data, therefore, questions about family involvement were a small part of the focus group format. The lack of data obtained directly from family members probably explains the difference in the number of comments made by patients and providers about the difficulties of including family members. It is likely that family members would also have concerns regarding how they were or were not incorporated in the care

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112 REFERENCES

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