David W. Kissane, M.D.
Chair, Department of Psychiatry & Behavioral Sciences
Jimmie C. Holland Chair
Memorial Sloan-Kettering Cancer Center
New York, NY
Dr. Baile: So hi, I'm Walter Baile and I'm director of the I*CARE program, Interpersonal Communication and Relationship Enhancement. And this is our ACE Lecture Series Achieving Communication Excellence. You can find all our lectures online at mdanderson.org/icare and you will also be able to find handouts that Dr. Kissane brought with him that could be downloaded from the web site. We'll have a few out after the lecture so we appreciate your coming. So David, you might notice there's a particular configuration in the room. You see the room is bowed this way, so we put people at both ends so that we have a level. So, anyway, so it's really my pleasure to introduce Dr. David Kissane as our guest lecturer today and Dr. Kissane is at Memorial Sloan Kettering Cancer Center where he holds the Jimmie C. Holland chair in Psycho-Oncology and is chairman of the Department of Psychiatry and Behavioral Sciences and attending psychiatrist at Memorial Hospital for Cancer and Allied Diseases. He's also a professor of psychiatry at the Weill Cornell Medical College. David obtained his initial medical degree and later a research doctorate from the University of Melbourne in Australia and across his career, he's kind of really been in the trenches of medical care having been a family physician for a while and told me today, he even delivered several hundred babies. So he knows what it's like to have challenging conversations with patients and family members. He's also trained in palliative medicine so it gives him a unique perspective on end-of-life issues in communication. So David's been at Memorial Sloan Kettering for 8 years? Did you mention, David? Where he's built really a first class communication skills teaching laboratory and probably, one of the foremost in the--in the country and pioneered research programs in family therapy and psychotherapy. And currently he is funded for a major research in looking at helping cancer survivors' transition from the acute care setting into the survivorship mode. So he's published widely in these areas of communication skills and innovative aspects of dealing and helping families cope with the challenges of cancer. His work has won him in 2008 the prestigious Arthur Sutherland award from the American Association of Psycho-Oncology. So David, welcome to MD Anderson and we're looking forward to hearing you talk.
[ Applause ]
Dr. Kissane: Thank you very much indeed, Walter. It's great to be down here with you all at MD Anderson and to speak to you today about family-centered care communicating with families. So here's a picture of a quintessential American family, just like all of yours, [laughter] Johnson's [phonetic] painting from the Met. And it shows the generations--three generations the centrality of the family I think is impressive as people orient towards the new babe, towards the children playing but grandfather is there allowed to read his newspaper and have his private time as well. We might think of it as an image of a well-functioning family. The families are well connected. And in that sense, often don't need a lot of psychosocial care. Some live in poverty, have great hardship and need immense support. And Max Beckmann here portrays the chaotic family where there is avoidance, where there is boredom with this sense of disconnection. And these families when they come into cancer care are challenging and problematic for us. So in this talk, I want to first of all have us think about how do we recognize the difficult family or the family that we might consider to be at risk. Then I want to move on to how do we run a family meeting. Some basic communication skills that clinicians need and yet medical skills and many, many courses are not very good at training people and how to conduct a family meeting. Thirdly, I want to talk about how this can flow into a model of family-centered care for families that are at high risk of a morbid outcome and tell you about our family focus group therapy randomize control trials.
So difficult families, families at risk--here is a memorial family I think a very typical example where Amy located here is a 48-year-old woman dying of advanced Upper Gastrointestinal Cancer. She's got liver and lung mets but she's entering respiratory failure. She's got agonal breathing, she's got a rising CO2, and she's dying. And there's no DNR order in place but her father who's by the bedside and holds the healthcare proxy is telling the team that he doesn't want her to go to intensive care and that he believes a natural dying process should be respected. So the palliative care team are called to help with this and to set up some palliative sedation and the psychosocial team is involved because sadly these two daughters, Mischa and Maggie don't in fact have awareness that their mother is dying. They've been protected from her illness. This being a super optimistic stance presented. The truth about just how sick and how poor a prognosis she has, has not been shared and so we're faced with doing this only on the inpatient floor in a crisis setting and helping these young teenagers to say goodbye to their mother before she dies. Not good family-centered care.
So difficult families can indeed be dysfunctional families where there's a lack of cohesion, poor communication and high conflict, such that we recognize these families as fractured as chaotic as a problem to care for. Other families might be difficult because they may have a psychiatric patient within their membership and here we have notions of high expressed emotionality, criticism, strong words within the family and we know that people with psychotic illnesses, people with depressive illnesses, have high rates of relapse of those illnesses when such family behaviors are prominent. We may have ethnic minority families within or language barriers and where there might be some cultural or religious variants that presents a clinical challenge and needs to be understood and addressed. Other families are at risk because of their membership, for example young children where they're going to lose a parent, where there are unavailable care providers perhaps in the very elderly, people who are isolated. Hereditary cancers will increasingly present challenges where people carry a gene, perhaps have an intermediate cancer risk in the future and have communication difficulties in sharing that with other family members. And we have developed a preventive model for palliative care, where we worked with at risk families and try and protect them from bereavement morbidity. So there are lots of families that are a challenge. When we look at the literature, Harding and Higginson have undertaken this review in which they've looked at caregivers' groups and seen little benefit to care providers. If problem solving skills are promoted, there is some gain, there's also the note that caregivers' values, self-reliance and independence. So respecting resilience has a place. But they conclude from this review that there's a great need for palliative care teams to target high risk caregivers and high risk bereaved persons. And when we look at the impact of hospice and palliative care services on the bereaved, we see that while there's an effect size there of 0.33 for the patients in terms of patient symptom management, a small not really a modest effect size, there's a negligible effect size on palliative care teams and their abilities to influence the outcome for caregivers and their family. So that is the rhetoric within hospice and palliative care that family centered care should be the norm. In practice, it's very hard to have a model that delivers effective care to families and protect people from morbidity.
So it's a bit like this psychotherapist here trying to do this particular job with a patient or family like this saying this is getting us nowhere. And I'm impressed by Karen Steinhauser's work at Duke, where she identified important attitudes at the end of life with a very large survey taking in not only patients and the bereaved spouses or immediate caregivers but the physicians treating the patients and the nurses and other care providers involved. And this slide shows the issues that there is consensus about, that dignity, trust, being prepared for dying and being able to say goodbye to your family members and having good symptom control. These are the issues that everybody agrees on. But here, we have the discordance where physicians as a whole rate very poorly things that patients consider to be important at the end of life, mental awareness, being at peace, not being a burden to one's family, having contributed to the planning of one's funeral, being able to help family members, help them adapt and adjust to one's dying so that you leave them in a better space and having a sense that life's complete and a lot has been accomplished.
Also we might ask, what about psychosocial morbidity within families? And looking back to work from the 80s and 90s whereas we recognize that about a half of patients towards the end of life, carry significant levels of distress. It's important to note that about a third of spouses and 25 percent, a quarter of adult offspring have levels of psychosocial morbidity, whether that's reflected by a Beck Depression Inventory score or a Brief Symptom Inventory, it's a measure of distress. So there's a need for family-centered care because the stress reverberates throughout the family of the dying relative and medicine has really been very slow to teach physicians about how to run a family meeting to help such people and how to recognize at-risk families.
So, some of my work over the last couple of decades has involved creating a typology of family functioning in the palliative care setting. And here we've been able through studies of several hundred families replicated now over 3 to 4 trials, we've been able to show that there are five broad types of families, classes of families, 2 of whom are well-functioning. Let me tell you about these. The supportive family type, and about a third of families are like this in palliative care, are very cohesive, they have great teamwork, communicate well, they don't fight, and they grieve adaptively. They carry very little psychosocial morbidity. These are the lovely families, pleasure to work with. Staff should not commit time to them. They're resilient, they cope, adapt, and yet on the floors you often see that these are the families that people enjoy spending time with.
A well-functioning family that I was less aware of we've termed conflict-resolving, and about a fifth of families are like these. These families fight, but they're tolerant of difference of opinion. In other ways, they are effective communicators, they're cohesive, they adapt well, they support each other. And interestingly, they have the lowest rates of depression of any family type. They really get their feelings out, even if they're tough feelings. So that's why these families are adaptive. Let's come to the other end of the scale and pick up hostile families. Everyone recognizes these. These are families that are fractured. People haven't spoken to each other for 10 or 15 years. The chaos and the conflict is pervasive and easily seen. And in the palliative care setting, about 6 percent of families are like this. And in the first 3 months of bereavement, that rate increases to 12 percent, as more intermediate families deteriorate. The second dysfunctional type of family we've called sullen and here the anger is more muted so that these families communicate poorly, they don't have great teamwork, but they really play down the fight. And they carry the highest rates of depression. It's that psychoanalytic concept, that anger that's turned in leads to depression. And about 9 percent of families are like this in the palliative care setting and 18 percent of 3 months of bereavement. So if I now go about 15 percent of families are very dysfunctional, clearly dysfunctional. And then we have this intermediate, final type of family where there's midrange communication, some teamwork, some conflict and quite a bit of psychosocial morbidity. And about a third of families are like that in the palliative care setting, dropping to twenty percent in the first three months of bereavement because these families decline to become more sullen or hostile-like in their nature.
So my argument--my thesis would be that we should target clinical activity towards the intermediate sullen and hostile families in trying to work to improve their well being. And we can do this and recognize these families through screening, so the Family Relationships Index is a-twelve item, true-false, pencil and paper response scale. It can be done on a tablet as well. And it was validated by Moos in Stanford back in 1980. It's been used in thousands of studies. It's very strong as a measure. And it tells us about how cohesive the family is, that is its team work, how expressive the family are in terms of sharing thoughts and feelings, and what they do with conflict. And so you can sum these just reversing the conflict score. And it has good sensitivity to detect family dysfunction--families at risk, and so it's an easy tool to give out. And well functioning families that have a low risk have high scores greater than nine, with four out of four for cohesiveness, which happens to be the most determinative of family functioning characteristics. Whereas intermediate and dysfunctional families get a total FRI score that's nine or less, and that can dip in cohesiveness. And here you can see how these scores--as global scores just go down as the grade or level of family dysfunction emerges for each family type.
So here's an example of a family with FRI scores put on a genogram. And you can see here is a mother with advanced breast cancer--she dies while the family's receiving care. FRI of seven, some depression there as well. And her partner, Joe [phonetic], is an accountant who's been a heavy drinker. See, he's lower FRI score, and three children. The boys' scores are a little higher than Maureen's. Maureen lives at home with mom and dad, whereas the boys have escaped. She is depressed with a BDI score that's quite elevated, and she has this angry conflictual relationship with her father. So here's a family in need with prospects for great morbidity developing here and even with Joe once Sheila [phonetic] dies. But the family therapy that this family received was able to support them--help them through, and was quite sustaining over about eighteen months. So it's possible if you don't give out a screening measure like the FRI, just an ordinary clinical practice to ask three questions about family life that will help you to recognize at-risk families. How well do you communicate? How cohesive is your family--you might say what's teamwork like in the family, and how much conflict is present. So, I talk of these as the three C's of family relation of life. And I think this should be bread and butter education at medical school, so that students, nurses, clinicians become very competent at recognizing at-risk families.
So let's go on now and talk a little bit about how to conduct a family meeting. And you've got to got to do this by engaging the family with questions and listening. This is a standard New York waiter, and there he is saying, "Although, you've yet to try your order or even order an entree, how is everything?" So our core goals of a basic family meeting--which can be adapted, are to learn about what the family's needs are, about the patient's illness. To do a bit of education about the illness and its management, to understand the family's wishes about end-of-life care if it's in a palliative setting, and the family's views, and the patient's views about the place of death. To deal with any pragmatics of health care proxy appointment and the creation of an advanced directive, which is all about decision making really, for the patient and the family, often on an in-patient level, we engage in discharge planning issues. But the pieces that are left out, that I think are core pieces and should be basic to family meetings, are to make sense of the family strengths and a coping capacity or recognize if there are limitations there--the families who are at risk. And if need be consider suggesting that the family might need some continuing help which can easily come out of a routine family meeting, and lead to a referral to a family clinic and every decent comprehensive cancer center has a family clinic that's as part of its psychosocial care team. Alan Valentine promises me that that's going to be well established here at MD Anderson.
So in a routine family meeting, you've got the question of timing and I like to suggest that this should be normative---when a patient is referred to a palliative care or home care program. With every in-patient, palliative care admission there should within the first 2 or 3 days be a routine family meeting happening on the floor. And if this is made part of routine care then it's accepted and easy and you get to deliver family-centered care. But you could do it with screening and that if a mechanism is readily available and easily used. You need to ask who is present from the medical side and there is that core group that makes sense, somebody to represent the medical issues, the palliative care doc or the oncologist or the nurse practitioner, social worker or psychologist or psychiatrist depending on who is available and others significantly involved. I've been known to go to a family meeting and find that there are 2 or 3 family members and 8 or 9 staff members lined up and I shoo them out of the room because you've got to have a sensitive balance to do this is in a humanistic manner. And on the family side, it's really dependent on who the patient, the healthcare proxy believe make up the family. So we do talk about a fictive kin and that really comes out of an AIDS era where some of these gay couples might have said, "I'm quite disconnected from a family of origin but I've got Suzy and Steve and Bill and they form my family unit now and I'd like them to come to the meeting. " Most typically of course it's the nuclear family that comes along and it or may not include the patient. Always better if you can have the patient there. And in instances if the patient is too unwell, if they had a delirium and it just wasn't suitable then you might at a later time go back and share with the patient what was said and what was concluded by the family discussion.
Now, I think this 2-part routine as a style of facilitation is interesting. When we study families and we do recordings, we find that when an oncologist is conducting a family meeting, they actually talk for 75 percent of the time because they're doing lot of these important things that a--the medical part of the encounter. And the family get to say what they think 25 percent of the time. And when you have a social worker or psychologist or psychiatrist to run a family meeting then the family members speak for 70 percent of time because there is much more interest in other things to do with coping and these are so fundamentally different that it makes sense to me as a clinician that whenever possible a 2-phase approach to a family meeting be set up where I do it with my medical colleague and he or she does the first part of the meeting dealing with the medical themes and then I take over and do the second part of the meeting. Because all of these clinician led agendas are really quite pertinent and appropriate and need to be dealt with but I'm arguing that the psychosocial agendas of checking understanding of the care plan and checking of concerns, examining the emotional adaptation of family members and their coping and working out whether family dysfunction exists, whether there are high risk people. That's an important goal before you conclude the meeting. So the co-facilitated approach is ideal to meet the broader bio psychosocial goals and it depends on mutual respect and collaboration between the clinical team to set it up this way. It means then that the first phase has the clinician facilitating and dealing with their goals and then the psychosocial person comes in on the second phase dealing with more coping related issues.
So when we do role play work in a com skills lab and we teach people in a fishbowl exercise how to conduct the family meeting. We have 9 strategies that we teach them and these are covered on the hand out, some of which I think are available at the end of this session where the strategies are down one side of the blueprint. And on our blueprints we also make a list of the communication skills and the nonverbal process tasks that people make use of to achieve the goal of that training module. And I'm not going to laboriously talk through all of those in detail today because that's part of a 3-hour module usually that people do with a lot of experiential role play work. But just to touch on the core strategies, we first of all attend to the importance of planning and the prior setup of arrangements for the family meeting. Who's going to attend? Who'll be the clinicians there? What things will need to be covered? What are the goals that the clinicians have? And then strategy 2 is you welcome the family. You orient them to the goals of the family meeting. And find out whether they also have goals and want to put agendas on the table. And I'll show you a video clip of that setup of a family meeting in a moment because I think that's one of the things that often people do poorly when they begin a family meeting. So often you see a person come in and start to talk about the cancer, and there's no setup. There's no agenda creation. There's no allowance for what the family's needs might be.
The third strategy is to check each family member's understanding of the illness and of the prognosis, key in the palliative setting. The fourth strategy is to check for consensus about the current goals of care. And we like to use that language of goals of care and ask family members what they perceive the goals of care to be. The fifth strategy is to identify concerns that family members may have about the management of key symptoms or care needs whether its pain, breathlessness or basic transition and movement of patients in and out of a bathroom for example. The sixth strategy then moves from what have been more of a medical care agenda to clarifying the family's view of what the future holds. And it includes end-of-life planning, discussion of the place of death, introduction of palliative care principles if you like. Strategy 7 is about clarifying how the family are coping, how they're feeling emotionally. And I'll show you a video clip to model how we do this, because this is also perhaps a more complex piece of this overall schema.
The eighth strategy then is to, out of all that's been said thus far, see if we can work out what the strengths of the family are and affirm those strengths, including their level of commitment to care provision and mutual support of each other, their open communication. So that for well-functioning families, it stops here, you praise the family. You affirm the fact that you see they have the ability to deliver this care and to handle the illness effectively. And you go forward then to close the meeting with a final review of the agreed goals of care and future care plans. But if you've identified that the family have concerns and issues that they struggle with, they communicate poorly, they have a lot of conflict, they're not working well as a team, then you've got the opportunity to make a referral to the psychosocial care team for ongoing family meetings, ongoing support, and you can setup a program of family therapy that I'll refer to in the third segment of my presentation today. And all of these modules are set out in a chapter in this new book with Oxford University Press. It's got chapters by Walter Baile and Patty Parker as well, other people from MD Anderson and I commend it to you as a very fine 62-chapter book of how to communicate well in oncology and palliative care today. Tony Back and he ONCO Talk work.
So now let me introduce a video clip with a hostile family where Mary is the person dying and concerned about her family although her FRI score you'll see, 11 out of 12 is pretty good. But her husband Robert is a television production manager, and he's had a problematic relationship with his 2 teenaged kids. 4 out of 12 his FRI score. You can see their ages here. And their two children, Denise, a university student, who says her Dad never listens. Phil, a high school boy and he can't be bothered. And those adolescents really give you their perception of how they view this family and the problems [inaudible]. So let's look at this family and see a video clip of the orientation and early setup of this.
[ Video Clip ]
Well thanks for coming together and Mary for bringing your family along today. It's good to have this opportunity to talk with all of you. Hi Robert!
How are you?
Good to see you here. Denise and Philip, it's good to meet you.
How are you?
What are you doing with yourself, Denise?
I just got home from school a couple weeks ago.
A little bit of small talk--
School or home?
[ Inaudible Remarks ]
What about from your point of view. Phil?
Another summer and one and a half year until I get my license?
[ Inaudible Remarks ]
So small talk put people at their ease.
[ Inaudible Remarks ]
To just see whether each of you have particular agendas that you want to put on the table today. Let's just take stock of these. Mary, Robert, what--I'd really like to know what's going to be like at home--I mean these next few weeks I would like--I'd like all of us to be prepared for what's to come.
If you're looking for some precise information about--
What will happen as this illness progresses.
That will be helpful
I would much rather to stay in the hospital. So, that they don't have to worry about it. I mean that would be better for me. And it's like I'm the one that's sick and I think, it will just relieve a lot of anxiety and stress for my family if I could just die in the hospital or people who are taking care of me--I don't think they should have to--to take care of me like that, I don't think they should be expected to--
Mary you're expressing your concern about being a burden to--
Yeah, I mean it's a burden, it has been a burden for a long time now. It's a burden--
[ Inaudible Remark ]
Mary we love you
I know you love me but I'm just saying, I mean, I just, it's--
So let's put that issue on the table as well as an agenda that we'll talk about in this meeting. What other agendas do you have as a family group?
Denise, any concerns for you?
Well I was--I wanted to ask you a question. I haven't really been noticing that the chemo is doing anything for my mom and I'm just wondering if there's some alternative, maybe she can just get off of it because it really doesn't seem to be going anywhere and frankly I think it's making her worse.
Okay [inaudible] that these are good agendas and we'll try and cover these. And as well I think we find it helpful to just take stock of what your understanding is of Mary's illness and its management. What our goal of care are, as we go forward from here. It's helpful I think to have everybody in the family understand these goals of care. Let's see if we can reach some consensus together about what goals of care help Mary in this situation. Does that seem like a reasonable agenda for us to talk about as we go forward?
It's a little bit of time in doing that at the commencement of a family meeting I think is a very good investment and helps things progress well?
Yeah, I want to go on and introduce some new skills because when we run family meetings, we use different skills to what we use in one to one interactions with our patients. Most often of course as clinicians we ask linear questions which promote a one on one conversation, it's asking an index patient to give a response to the to question that's the subject. Circular questions are different. When we're asking circular questions, each person is asked to provide an opinion about someone else sitting around the family circle. These invite reflection and they draw the family's attention to issues and they open up the dynamic of the family. So it is the précis in our model in the subsequent video clip. And circular questions can become interventive either reflexive or strategic in their nature. So that you can embed a potential solution into the language of a question, you can place a hypothesis about the family and its style of relating into a question. You can stimulate problem solving or reflection and so these are more sophisticated questions. Other ways that we work as a facilitator in a family session, to keep the family doing the work. And there's a whole theory of this skill base to questioning techniques which is integrated so that the linear type of question is more investigative and simple circular questions can also be exploratory and orienting as we learn about the family. But eventually, as we become therapeutic and we want to influence the family, we are either strategic in our questioning where we may hint at a possible solution with a corrective intent or we more generally have been asking something that's reflexive and gets the family working to consider a possible solution.
[ Video Clip ]
I wonder if it's possible for me to ask you. In the future, is there someone in the family here that you hold a greater concern for than others?
Well, I'm concerned about Phil, more than anyone.
Tell us why. Help us to understand that concern.
Well he's the youngest. I don't think he really understands what's going on as much. He hasn't quite wrapped his head around the fact that his mother is dying [laughs]. Even though, I mean I try to talk to him about it and you know, I feel better about it if his relationship with his father improves, that they both make up.
Denise, let me ask you how you see the family coping in the future in the time where perhaps mom is not there?
Well in September I'll be back in school.
She doesn't want to be in this family.
I mean I really want to go back to school. So--
Obviously college is very important to you. What about the family as a whole? How will the family be? How will Dad, how will Phil be?
Frankly, I don't really agree with my Dad. I don't think Dad will be fine, you know. And my mom really holds this family together, even when she's sick. So, I don't know. I mean I guess over time you have to move on. But I don't think it's going to happen so quickly.
Mary, Denise just described you as the linchpin. In what ways can you see Robert's role as a father in this family being seminole to the kids?
Robert is such a good man. He is so giving and loving.
Philip, let me draw you in on this conversation and ask what do you think losing your mom is going to be like for Dad? What will Dad's grief be like? How will this impact the both of you?
Since she got sick, he's been around more and that's not the best thing. He's on top of me, on top of my sister all the time. A lot of yelling, a lot of shouting, a lot of anger. If she's gone, I see that getting a lot worse.
[ Inaudible Remark ]
Your dad's been more irritable, I take it, of late.
Yeah. I don't know if that's just 'cause he's around more or if that's because of what's going on.
It would be reasonable to consider the strain of this predicament upon him. How do you think he's been coping with your mother's illness?
He'll get along. I think he'll be all right, I guess.
Denise, what about your perspective? How do you see Dad coping? Does he bring sadness? Has he been distressed, irritable?
I don't know. He seems kind of like what Phil said. He seems to be really frustrated by it and I guess angry, I know that he's not angry at anybody. It's just I think he's angry that this is happening.
Robert, when Mary speaks of her desire for you all to stay together in the future, what's your take on that? What's your motivation to make that happen?
My motivation is that I see Mary and my children, and I need them. I really need them. And I think I need to be with them.
Denise and Philip, I hear Dad putting a plea in here for some help with this. Mary, to what extent do you see Denise and Philip being able to rally and respond and help Robert in the time ahead?
Well I hope that they hear what he's saying. I mean, it's not easy for him you know, knowing that I'm not going to be here. I mean, he is going to be the one in charge now and you know a lot of the anger is coming out of the sadness we both feel.
[Inaudible] idea that Mary has put out but your ability and anger [inaudible] not to mention the grief and some people instead of, perhaps being tearful and crying express their grief through some irritation and anger. Sometimes to think of it as grief, think of it as coming from a sadness of the situation helps to understand that, that mood and could be more tolerant of it, at times.
To just let him yell?
Not to, to confront? How difficult is that to do?
If that's what I have to do then that's what I'll do.
It's interesting to think about empathic responses in family sessions because normally of course in communication work we encourage a lot of empathic support. And that's linear usually in this exchange from the clinician to the patient. In a family meeting when you to see distress or emotionality, if the facilitator of the family meeting can use a more circular principle of asking questions then the goal can be to help other members of the family offer empathic responses to the person who's distressed and that builds mutual support between the family members which ultimately is a more effective outcome than for the therapist him or herself to be the empathic object always in response. So there is quite a difference there in style of communication stance.
So, to summarize a routine family meeting, the importance of the family is clearly acknowledged an environment of support is what we want to create, sharing of hard news, sad news can be basic. We want to assess family dynamics. We want the family to be engaged and joined with this person particularly if there's a need for ongoing work which needs to be included and any specific concerns or issues that the family members have need to be defined, summarized, and accepted. So that steps to resolve these concerns can be considered. It might be wise to consider who is missing and what the contribution might be. The overall commitment of the family is demonstrated and acknowledged towards the end of the meeting and there is role modeling going on about how to build consensus with family problem solving skills being promoted.
Palliative care and hospice teams are often challenged to do this sort of family work in the home and that's a very sensible and appropriate thing to do. Through this, we've learned a small number of contraindications. Families with high conflict are often better approached for their first meeting in a mutual space. Bring them into the clinic. The chaotic family might be quite disruptive in that first family meeting and it's hard for a facilitator if people are walking out of the room in anger and upset. Sometimes, geography and suitability of location is important and fundamentally we want the therapist to be safe. So there are some rules to clearing the length of time you're going to talk for is important. Selecting a suitable room, shifting chairs around is something that therapists often don't feel empowered to do but you must. Asking the family to switch off the radio, take the telephone off the hook, defer refreshments, prohibit cigarettes smoking, settle basic rules and discuss what will happen if a well intentioned neighbor knocks on the door or a family visitor arrives. Sometimes you can put a note on the front door, saying, "Palliative care team holding family meeting. Come back at such and such a time."
So here are the basics of family meetings. I want to go on in this third section about a model of building family-centered care and doing what we call family focused grief of coping therapy for at-risk families. And this is being presented in this book which is very clinically directed and still available through reprints for example, via amazon.com, Family Focused Grief Therapy. And the key premises guiding this model, now that we can classify families as I've described according to the quality of their functioning and that this functioning is highly predictive of the level of psychosocial morbidity or poor individual coping amongst family members. So if you illustrate for example, if we look at the sullen and hostile families shown here in red, we see a mean Beck depression inventory scores on the cognitive form at the back where a figure of 5 is a threshold. We see high depression in these families, less depression in the intermediate and supportive families and least depression in conflict resolving families. And similarly with social adjustment, we see that the supportive and conflict resolving families, the well functioning ones. Low scores mean good social adjustment on this measure. Higher scores reflect poorer social adaptation in the work place, leisure activities, extended family gatherings, et cetera. So, we have a reason to target families at risk but--while I've used terms like sullen and hostile. I would never want you to label a family. It's a preventive model to select at-risk families so we never use these labels. We'd simply say we'd like to meet with your family to talk about the illness. There are usually benefits for all the family coming together and meeting in such a way.
The caption here says, "I never thought I'd have to move back in with my parents" [laughter]. But family work is very important, both in palliative care and in bereavement. And so this family focused model can involve a brief focused approach, 4-10 sessions would be the typical length proportional to the functionality of the family and it's good if it's started in palliative care when the cancer patient is present because then their views and their voice can be echoed subsequently in the family meetings. So it's a model that's continued into bereavement and to target at-risk families. And our goals, to try and optimize family functioning. So we seek to increase the family's openness of communication, the cohesiveness or team work and the reduction of conflict and in doing this we're wanting to promote their exchange of feelings, their exploration of coping styles and understanding of that. How they deal with grief and mutual support of each other. So here's a process approach where we've looked at each individual session and the family coding their impression of communication and in example A here, you see a family where across the sessions communication steadily improves.
Family B, you might say is pretty horizontal but it started off with a high threshold of communication in the first place. And in a small number of families, we might see communication decline if the family are really struggling with the family work. Not all psycho therapy is helpful but in general we've been able to show that we do improve family communication significantly through these sessions. And we've also been able to show that when that happens, we have an impact on positive affect with a significant improvement in positive affect as a result of the family communication. We've been able to show that we can train therapists typically social workers often psychologists, sometimes nurse practitioners really love this sort of work and they can build a strong alliance with the family. They can learn to affirm family strengths to plan a treatment plan to focus on agreed themes although sometimes this gets a little harder for less seasoned therapists, to promote the sharing of grief and bereavement and to terminate the therapy effectively. Maintaining the family's sense of safety is a core and important dimension of doing this work. So it means if conflict breaks out during the session, you need to invite the family to take a time out. Maybe to focus on the process of the conflict, not the content of what they're fighting about. Perhaps to ask about the advantages and disadvantages of that conflict. To see if there's a pattern that can be discerned across generations. To promote a search for alternative solutions but often we invite the family sometimes to disagree and respect different points of view, to consider forgiveness and tolerance. And talking about death and dying is another crucial thing that's hard for families. And here we need to invite them to consider the seriousness of the illness and ask about prognosis so we would commonly ask a question like, what has your oncologist told you is the likely outcome of this cancer and how serious is it? And for families that want to avoid such a conversation it's very helpful to go around the circle and you usually find that one of the children will spill the beans. Someone will use the death word and say, "I'm worried that mom or dad will die." And once that death word is on the table it becomes easy for the facilitators of the meeting to then lead into this conversation about it. But it's important to affirm protective behaviors and the way that families often are protective of the sick patient and want to avoid a death and dying conversation, but circularity is the key. You can gain permission to consider hypothetical timelines. And this is a technique in which you might say to the family "Tell me what your hopes and wishes would be if in fact your dad were able to live a full 12 months?" And now what would happen? How would those wishes change if you could only have 6 months of life for him? And now let's do the hard one and consider what your wishes would be if you only had two months to live? So those hypothetical timelines are very helpful for families to work their way through death talk and start to do--talk about the hard things that they need to grapple with.
When we examine the association between family functioning and a patient's preparedness for death, we find that reducing conflict is very significant in being able to improve that degree of preparation for dying. And similarly, family functioning and a patient's sense of life completion by opening up communication of thoughts and feelings, expressiveness and improving conflict management, we can again increase the sense of likelihood that a person has this idea that their life is now complete. Their work is done. And so, in looking at complicated grief cases in our current trial at Memorial, we've got early data here that at 6 months of bereavement have a reduced rate of family members with complicated grief compared to people in the standard care arm, looking very promising. And similarly but just briefly, looking at depression data, it's a busy slide but focusing here on the top 15th percent of distressed individuals at baseline. And here in the standard care arm we see the BDI scores don't change very much. Depression is much the same. But here we start to see significant reductions in mean depression scores for families getting 6 or 10 sessions of therapy. In what is in this study, a dose study looking at the different doses of therapy to see if we can work out and predict what length of therapy a particular type of family needs. So, there's a significant improvement in depression, in bereavement as a result of this kind of family work.
Engaging families can be a challenge. The model is preventive, we have to be respectful, and so we may need to sometimes respect people not attending. The less cohesive a family is the more active the therapist needs to be in following up family members personally, inviting them to attend. And sometimes during the therapy, if somebody's been missing and they're a key person, we might write and say, "You know we've had 4 family meetings, I understand you've not been able to come but this is what's happening. This is what the dialogue's about." And that method works very well. However we do need to set realistic goals. It's a time-limited and focused therapy and it's focusing on cancer. So we're not going to set out to modify long-standing personality difficulties. If there are entrenched relational patterns like people not talking to each other for 10 years, we may not change that. It would be wanting a miracle and wanting too much. Sometimes therefore we need to respect distance as an appropriate solution to people not having a goodness of fit and having too much conflict if they spend time with each other. We limit time spent on individual crises and we are pragmatic in identifying the goals of the family work so that this model is focusing on the functioning of the family around the cancer, around the illness with its issues of related coping and eventually grief.
So to illustrate realistic goals, here's a family where Kurt dies from Oklahoma. When Antonia was getting divorced, Kurt actually purchased a house for her and her child immediately next door to Willie's [phonetic] property. But he knew that his brother and sister didn't get on. Willie wasn't very interested in coming to the family meetings, in fact, the women were the ones who came and as soon as Kurt died, Willie put his house on the market and moved away from Antonia. However, focusing as the therapist did on the female network, the women were able to be very supportive of each other. So the goal of helping that female network to do well together was an effective and realistic goal, but correcting that longstanding sibling rivalry between brother and sister would've been unrealistic and not something that you could accomplish from a brief and focused model of therapy.
There are many things that families talk about and I'm not going to touch on these in length. Just a list on there for you to cast your eye down and see many of the issues of suffering, of reminiscence, celebration, dealing with unfinished business, saying goodbye, sometimes the needs of children, historical influences. There are many themes and this is the bread-and-butter work of what is talked about in the family sessions. As well as asking effective questions, therapists have to be good at making good summaries and this is a key skill. These help pace the therapy. They bring the family to consensus. They ensure that the family are integrating the ideas that are being talked about. And there are some rules about how to do this, to include as many members as you can in the summary, affirming strengths alongside issues or concerns. So there's a real balance or neutrality being maintained. You may put a suggestion there. But I'm not going to show a video clip here but summary points are very important. And in a way, they help a therapist to be neutral, which is a key rule that when you do family work, you want the family to take responsibility , accepting the way they relate, or for changing the way they relate. So you avoid getting drawn into any alliances that would triangulate and disrupt the family work. You may temporarily support an embattled family member but then move back to a more central stance. And the goal really is to search for other family members to take up that alliance with an embattled member, whether it's from the same system the children are across that. So summaries are very helpful in supporting neutrality. Co therapists work and it's a good way of training people from all disciplines. And here's a trial result from a randomized control trial that showed at 30 months of bereavement, that we have a significant reduction of distress in the therapy people compared to the control arm. And looking at the most distressed at baseline, looking at depression for example, highly significant reduction in changed scores on the depression measure. And reasonable effect sizes for intermediate and hostile families, and we're now doing a study of dose intensity because in the very first trial, curiously the sullen families got a smaller dose of sessions with a mean of 6 sessions. Our fixed size wasn't as strong there so we're wondering if we need to increase that and ensure that certain family types get a long enough period of therapy. It's featured also in this recent handbook of psychotherapy in cancer care that I commend to you, 21 chapters sponsored by IPOS and just out this year, a lot of fine clinical examples there of how to do good psychotherapy in cancer care.
In concluding, I'd like to acknowledge many collaborators at Memorial, Ackerman, hospices, my colleagues in various research programs including funding from the NCI. And so to sum up, family-centered care is vital in oncology. Bereavement care begins in the palliative setting, not once the person's died. Family meetings are preventive, cost-effective, and very worthwhile. You can identify at-risk families, but of course it's all dependent on having appropriately-trained staff and supervision good mechanisms to empower this. Thank you for listening to me and I'm happy to answer any questions.
[ Applause ]
So, I'd like to start with a question and I'm sure many people here who aren't in the psychotherapy area, maybe we'd like to know how long does it take to train someone to hold a family meeting of the kind that you were talking about?
So in a fishbowl role plays in a Com Skill lab, we do a 3 hour initial introduction to it. But we look for a lot of co-facilitation on the floors. And if nurse practitioners are interested and social workers are interested, we team people up and we provide someone like a Walter Baile or an Alan Valentine as a supervisor and enable them to come and discuss their experiences and in that way reflect on them and build experience. There's nothing better than working with a good facilitator to develop these skills as time goes by. I really believe we need many many more clinicians to get good skills in conducting a family meeting. It's one of those clinical activities that many clinicians don't do as well as they should.
Thank you. Any questions that anyone would like to ask?
Okay. Well thank you very much David.
[ Applause ]
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