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Death & Dying

An Interview with Barbara Okun, Ph.D., and Joseph Nowinski, Ph.D., on Family Grief

David Van Nuys, Ph.D. Updated: Sep 14th 2011

 

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Barbara Okun and Joseph NowinskiMental Help Net presents the Wise Counsel Podcast, hosted by David Van Nuys, Ph.D. In this podcast, Dr. Van Nuys talks with Dr. Barbara Okun and Dr. Joseph Nowinski about how families can find renewal through loss. People who are diagnosed with potentially fatal illnesses used to only have a few weeks, if that much time, between the diagnosis and their death. And today, with the advances in medical technology, people may live years with a potentially terminal illness, and they are part of the grieving process. So it is an extended, prolonged grief which allows patients and their families to prepare. What Dr. Okun and Dr. Nowinski set out to do was to try to see if they could provide some kind of a roadmap for families and for patients as to what to expect, because grief has really changed so much. They call this the new grief and it provides a wonderful opportunity for people and their families to work through unfinished business and to plan together; being able to say goodbye as a family system. So it becomes a process rather than an event.

David Van Nuys: Welcome to Wise Counsel, a podcast interview series sponsored by Mentalhelp.net, covering topics in mental health, wellness, and psychotherapy. My name is Dr. David Van Nuys. I'm a clinical psychologist and your host.

On today's show, we'll be talking with Dr. Barbara Okun and Dr. Joseph Nowinski about how families can find renewal through loss. Barbara Okun, Ph.D., is a professor of counseling psychology at Northeastern University and a clinical instructor at Harvard Medical School. She's maintained a clinical family therapy practice for over 30 years. Dr. Okun is the author of several books on issues affecting families, and she's a columnist for The Family Psychologist, a publication of the APA. She's trained family court judges and family systems perspectives at the National Council of Juvenile and Family Court Judges, and mental health workers in Israel, Kuwait, and Central and South America. Dr. Okun's latest book is Saying Goodbye: How Families Can Find Renewal Through Loss, which she coauthored with my other guest and her colleague, Joseph Nowinski, Ph.D.

Joseph Nowinksi, Ph.D., is a psychologist with more than 20 years counseling individuals and families. He's held positions as assistant professor of psychiatry at the University of California San Francisco, and assistant adjunct professor of psychology at the University of Connecticut. Dr. Nowinski is the author of several award-winning books, and the principal author of Twelve Step Facilitation Therapy, selected for inclusion in the prestigious National Registry of Evidence-Based Programs and Practices He's also a regular featured blogger for The Huffington Post.

Now, here's the interview:

Drs. Barbara Okun and Dr. Joseph Nowinksi, welcome to Wise Counsel.

Joseph Nowinski: Thank you.

Barbara Okun: Thank you. We're happy to be here.

David: Good. I'm happy to have you. Now, in your book, Saying Goodbye: How Families Can Find Renewal Through Loss, you talk about what you call "the new grief." What is the new grief?

Barbara Okun: Well, we call the new grief what's happening today, in that people who are diagnosed with potentially fatal illnesses used to only have a few weeks, if that much time, between the diagnosis and their death. And today, with the advances in medical technology, people may live years with a potentially terminal illness, and they are part of the grieving process. So it's an extended, prolonged grief which allows patients and their families to prepare.

Joseph Nowinski: Right. As Barbara said, it's prolonged. And what's different about it as opposed to what we kind of called traditional grief or mourning, if you will, is when people would die more or less suddenly, the family wasn't drawn in quite as much - nearly as much, actually - as it typically is now. Whereas these modern medical advances, you have diagnosis, treatment, potentially relapse and so forth. There's all kinds of extended care giving that can be involved, and it really draws in the family for a prolonged period of time. And what we set out to do was to try to see if we could provide some kind of a roadmap for families and for patients as to what to expect, because grief has really changed so much.

David: It's funny. It's ironic, in a way, that I guess we're living longer, and that's a good thing. And we're living longer, and that's a bad thing because it can mean an extended period of debilitation and needing to rely on the family and other caregivers.

Joseph Nowinski: Exactly.

Barbara Okun: Well, yes, but it provides a wonderful opportunity for people and their families to work through unfinished business and to plan together, both in terms of health care, financial - being able to say goodbye as a family system. So it becomes a process rather than an event.

David: Yeah. I notice you talk about grief as a family matter.

Barbara Okun: Mm-hmm. And illness as a family matter, too.

David: Sure. It's not just the person who has the illness that's affected, but also the people who are close to that person.

Barbara Okun: And in terms of the grieving, though, the patient is part of the process today, whereas in earlier times, when death was more sudden, the patient wasn't part of the process. It just happened in crisis.

David: Yes. Joe, you were going to say something?

Joseph Nowinski: Oh, just pretty much the same thing; that what happens today with modern medicine as opposed to traditional grief, where someone might be diagnosed - even might die very suddenly. Joan Didion's book, The Year of Magical Thinking, kind of addresses that very eloquently when her husband sort of dropped dead suddenly over dinner. Or when someone is diagnosed - as Barbara mentioned before - and dies suddenly, the family isn't joined in the same way.

In fact, what happens often is there's just a lot of loose ends that are left for the family, a lot of unfinished business as she was saying, and so forth. And if there's any kind of a silver lining to this new grief, is that it does allow families - even though it's very stressful for families and the patient alike, it also offers some opportunities to make changes in family dynamics, to address issues that weren't addressed, to plan so that there's not as many loose ends.

David: Yes, that certainly makes sense to me. Now, you two have developed your own five stages of family grief, and they're different than the Kübler-Ross five stages. And as a matter of fact in a previous interview, I interviewed George Bonanno, Dr. George Bonanno, who's done research on grief. Are you two familiar with his work?

Joseph Nowinski: Yes.

David: And so, as you know, he was critical of Kübler-Ross, saying that her stages came out of people who were dying rather than those who were grieving the loss of a loved one. So he felt it was kind of inappropriate to apply her model to grief of family members. But you two have developed your own five stages of family grief, so take us through your five stages.

Barbara Okun: Go ahead, Joe.

David: I'll just say them quickly here. They're crisis unity, upheaval, resolution, and renewal. So, Joe -

Joseph Nowinski: I'll start with number one, and then Barbara can - the first stage, of course, happens when some gets a diagnosis that's either terminal or potentially terminal. And sometimes that happens over a prolonged period of time. You know, sometimes people develop some symptoms, they go to a doctor, there's a whole series of referrals, there may be a whole battery of tests and more tests, and that finally leads to a diagnosis. Sometimes it happens rather suddenly. Someone goes to the doctor because they have a persistent cough, and 48 hours later they know they have a terminal or potentially terminal illness.

And that's sets the family into a crisis. That's the first stage we call the crisis stage. And obviously it pretty much speaks for itself. And what happens during that stage is people are usually shocked. Sometimes there is some of what Kübler-Ross talked about as denial, people not wanting to -

Barbara Okun: Or minimalization.

Joseph Nowinski: Or minimizing. And sometimes the patient wants to be in denial. Sometimes the patient - we write about - Barbara wrote about one patient who didn't want anyone to know. I mean that's not so unusual. So you deal with that crisis that immediately sort of - in some cases it paralyzes people.

David: So maybe a kind of numbing might be one way that people could respond?

Joseph Nowinski: Yes. The most typical reaction right up front is anxiety. People get scared when they hear the news that someone has a terminal illness. But sometimes there are other reactions, and we've helped people to kind of normalize that. Some people feel angry or resentful or guilty. So there's a lot that could go on, beginning from that first stage when someone is diagnosed, and that marks of the beginning of what we could call a long, long-based journey into night.

David: Yeah. I would imagine that in each of these stages there's sort of a challenge and an opportunity at the same time. So how would you summarize that, Joe, for this first-stage crisis? What's the challenge? What's the opportunity?

Joseph Nowinski: I think the first challenge is - from the interviews we've conducted and of what people have shared with us - was to sort of expect the unexpected. That's the first thing that we tell people: expect the unexpected. Don't expect that everyone's going to react the same way or that your feelings might not change. You may feel very anxious when you first hear that a loved one has this diagnosis, and two days later you may find yourself feeling angry.

David: Yeah.

Joseph Nowinski: So the first challenge is to understand that it's unpredictable, that you're about to get onto a basically an emotional rollercoaster, and that to normalize whatever feelings you have. And, if possible, if you have someone you trust to talk to, to be able to express those mixed feelings you might have.

David: Yeah. Now, I don't want to be too Pollyannaish here, but is there what might be characterized as an opportunity in this crisis stage?

Joseph Nowinski: Sure. Sure there is. One man that I worked with - to make a long story short - he was the younger of two brothers, and his older brother was a very star athlete, and the younger brother was not very athletic, but he was very academically talented and became a college professor, as a matter of fact.

When he found out that his father had terminal cancer, he was angry. And I asked him why he was angry, and he said because "Now he's going to expect me - everybody's going to expect me to feel sorry for him." And it turned out that he was harboring a lot of resentments from childhood when he felt that his father had favored his older brother, okay?

So here the first thing was to normalize that; that not everybody reacts the same. But the second step was to recognize this as an opportunity that this man could take to perhaps rectify this, perhaps address this with his father - which he eventually did.

David: Okay, that's great. And I appreciate any stories that you two want to throw in here as we go. Those are always helpful. Okay, Barbara, take us through the second stage, which is unity.

Barbara Okun: Well, second stage is after the diagnosis is accepted, and the family members have some really important tasks to take care of. First of all, depending on where they live and what resources are available, they have to decide what kind of medical team to assemble. They have to decide where to get treatment. They have to decide what questions to ask. There's a lot of work involved in this unity stage, and usually everybody in the family, regardless of where they live geographically, contributes.

And they work together to decide how they want to live the rest of their lives, what they can do to make arrangements for what kinds of treatments may be available, to make a lot of choices. And typically the patient is in really good shape at this time, not feeling too debilitated because treatments haven't started yet. And so it depends on the communication in the family and the previous roles and rules and relationships and responsibilities of each person. The people are cooperative here. It's still a crisis situation. The rules haven't been established yet, the new rules.

David: And how would you characterize the challenge and the opportunity of this stage?

Barbara Okun: Well, I think the challenge is to be assertive in terms of getting the kind of treatments you need, lining up legal and financial consultants, and living arrangements and caretaking. I think it's important the challenge is to work with each other, put previous resentments away, and let's make the best arrangements for the patient and for everybody else in the family.

And, you know, this can come - we're not just talking about the elderly. Unfortunately, these days we're finding people of all ages in this situation, facing a potentially fatal illness So we have to look at stage of life; we have to look at what the responsibilities have been; we have to rearrange that; we have to decide who's going to do what.

David: Yeah.

Joseph Nowinski: What came out of the interviews that we did was that many people said that, once they get past that first crisis stage, they want to help, but the families often don't know what - quite what to do.

Barbara Okun: What to do.

Joseph Nowinski: And so what we advise them in the book - and we give them basic how-to's about that - is to organize themselves, is to organize - have someone step up to the plate. And you need, for example, a point person to deal with medical. You need somebody to do research. You need somebody to go to medical appointments and take notes, because many people said that they would go to medical appointments and listen, and then basically as soon as they walk out the door, they really forgot half of what was said. And that's very typical because it's a very emotionally charged situation.

So someone to kind of take a look, as Barbara said, what were the responsibilities of this person? Are they a parent? Do they have children? Are they elderly? What kind of role do they play in the family? What needs to be done in terms of not only medical team, but perhaps you need to start talking about legal issues. So, in that stage, we really advise the family to try to get organized.

Barbara Okun: And there's another part of it, too. We also try to get the family to think about what they want to do as a family to balance optimism and hope with reality. What have you put off? What's your bucket list? What would you like to do?

David: Yes.

Joseph Nowinski: Right.

David: So I guess the opportunity in this stage is really with - initially probably people have different ideas, and maybe pulling in different directions.

Barbara Okun: Exactly.

David: But the opportunity is to - ultimately to experience unity.

Barbara Okun: And the other thing, David, is that we have to recognize the social changes that have occurred. Families don't live in the same geographical area any more. Women have careers or are working. So we can't go by the old assumptions that the daughter's going to be the caretaker, or the wife. The circumstances are very different today.

David: Yes, they certainly are. Well, let's move on to the third stage, which is upheaval. That seems a little strange coming on the heels of unity. Tell us about upheaval.

Barbara Okun: Well, upheaval probably is a result of the new grief being prolonged. After a while people start wondering how long is this going to go on. How long can I run back and forth to visit my parents, or can I expect my relatives to help with the children? And people start getting a little frayed at the edges, and old resentments come back.

Joseph Nowinski: One woman who we interviewed was - she was married with two teenaged children, and her parent became terminally ill. And she would drive several hours every weekend to help out. And at first when you're in that crisis or unity stage, that's fine, but that eventually begins to wear and tear on the individual's own family. And in that case the teenage kids began to have some problems, and the husband began to become resentful. So that's what we mean by upheaval.

And it's often the result of things - that maybe the failure to organize earlier, to delegate responsibilities, to share things. It often, unfortunately, is one person who bears most of the caretaking responsibilities. And then they face the possibility of burnout.

David: Yes.

Barbara Okun: They not only face the possibility of burnout, but emotionally they feel guilty because they feel ambivalent.

Joseph Nowinski: Exactly.

Barbara Okun: Everybody's sort of thinking, "When is this going to end?" and then you feel guilty for feeling that way. And also a lot of times people don't know how - not to ask - but to insist on getting help. I had one situation last summer where somebody called me who - she wasn't married to this man she'd lived with for many years. They were in their early 70s, and he had been diagnosed a year before.

And two years prior, she had arranged a family reunion, which was at the end of last summer. And she had asked his adult children if they could come and stay with him, because he couldn't be alone, while she went to this reunion. And they were sons who said, "No, we don't do that kind of stuff." And she was really upset.

And I said to her, "You just have to call them, and you need to say, 'I'm going to be out of town such-and-such-and-such a date. You need to make arrangements.'" And when she put it that way, they came across. One of the sons came up and then a granddaughter who had just graduated from college came. So I'm saying we try and help people take care of their own needs too.

David: Yes.

Barbara Okun: Because this goes for a long time, and the depression rate and anxiety levels of primary caretakers, if they can't delegate and get some respite, is very, very high. And that's not good for the caretaker or for the patient.

Joseph Nowinski: Right. And the caretakers often don't feel confident [?]. As Barbara said, they feel guilty. So they're getting burned out, but they don't want to reach out. And that's something we really encourage them to do in the book - that this is expected; this is what happens to people. And we also give them some resources because there's a whole online -

Barbara Okun: [Unclear]

Joseph Nowinski: It's wonderful now in terms of resources. There's places like Lotsahelpinghands.com. There's places that you can go -

Barbara Okun: Caring Bridge.

Joseph Nowinski: To try to create a community support [audio break].

David: What was that one, Barbara, that you mentioned?

Barbara Okun: CaringBridge.com. That's where friends can not only get updates on what's happening with the patient, but make arrangements of who's going to bring food what night. But that's the thing that happens too, David, in this stage. This has going on for a long time, so all the friends stop visiting and volunteering. People sort of move on to other things. The crisis is over, even though they know the patient is not well.

David: Okay. Let's move on to the fourth stage, which is resolution.

Barbara Okun: Well, that occurs primarily when it's pretty clear that treatments aren't going to work any more, that things are going downhill for the patient and for the family. And that's a time when people really do need to talk and go over the plans they may have made in the beginning about where they want to be buried and how. Who do they want with them? How do they want to die?

You know, David, today or in the last 20 or 30 years - maybe even 40 - women have been able to choose how they want to have children - with a midwife, with a doctor, in the hospital, at home - all kinds of choices. Well, the same is true about end of life. Do you want to be in a hospital? Do you want to be at home? Who do you want to be with you? What do you want to have happen? All these things need to be revisited and talked about. I know many of the people we interviewed wrote their own funeral services and declared who they wanted to be pallbearers and what music they wanted.

And the more you can talk about it - and particularly if the patient is an adult and can talk about what they would like to happen after they go - with their children, with their family. And for parents of younger children, they often make videos and they compile family photo albums. There are a lot of activities and family events that they can plan and work on together that will help everybody find peace with this.

Joseph Nowinski: This is also a stage at which people can sort of - as the name implies - resolve issues. That's the opportunity here; that we've seen that happen. First of all, as Barbara is saying, it's an opportunity to plan. Many of the people we interviewed really had sad stories that tell about how that didn't happen. They didn't know what their parents wanted. Their parents refused to talk about it. They didn't know what kind of a - how they would like to say goodbye, who they'd like to have there, and what kind of service they'd like to have, because they were afraid to talk. So we really give some people some guidelines as to how to broach that.

But, beyond that, there's also these issues, these old family rivalries and jealousies that come out with this prolonged - this new grief, as we call it. And it presents an opportunity, and many people can seize on that opportunity. One woman, for example, she and her sister - their mother had died when they were about 8 or 10 years old, and they were very close to their mom. The father remarried a couple years later to the stereotypical step-monster, who treated them poorly and criticized them relentlessly, and sort of favored her own daughter.

And they grew up - I mean they grew up, got married, had their own families, but they never resolved any of that, okay? They never resolved any of that. And then when dad was diagnosed with terminal lung cancer and they both kind of rallied around him, they - one lived closer than the other, but they both, as Barbara said, sort of rallied around and did what they could for a period of many, many months. It also presented the opportunity for them to talk with Dad about how they had really felt all along.

And it came to a head when they went to visit him finally when he was in hospice and they were told that they couldn't go in because his wife had barred them from going in. And so they had been fairly unassertive all those years in terms of dealing with this. And what they did, the way they approached it - this was the opportunity for some resolution - is that they knew their father's lawyer, and they met with the lawyer and explained the situation. And he went and visited their father 'cause he had access.

And then about several days later they got something in the mail saying that they were authorized to go see their dad. And so, for them, it may seem like a small step. It was actually a major step for them in terms of asserting themselves. It really did wonders for their self-esteem, and it was, again, an opportunity for some resolution for them.

David: This raises in my mind kind of a tricky issue of to what extent is it appropriate or inappropriate to express anger, resentments, unresolved issues, to a dying person?

Barbara Okun: Don't you think - I think it's how you do it.

David: Say more about that.

Barbara Okun: Well, if you send, "You know, I've always felt hurt because it seemed to me you favored my older brother," rather than "You were mean to me." If you send an "I feel" message - I care about you and I just want to clear the air between us while we can. I think that's important.

But one of the other things I wanted to mention that's important here, that by the time you get to the resolution stage, there may be all kinds of side effects from treatment and cognitive declines. And that presents difficulties, which is why it's good if communication and these conversations begin earlier.

But one of the issues that several of my patients have come up with at this stage is when the patient wants to stop treatment or is ready to let go, and there's disagreement in the family. Some people want to respect his wishes; others want to hang on. And sometimes the physicians, who are socialized and trained to preserve life at any cost, want to continue treatments that have toxic side effects.

So these are issues that I often get families coming in to talk to me about during this stage. And, again, the important thing is to think about the patient's best interests, unless the patient is cognitively impaired to the degree that he or she cannot participate in the discussions. And this is another reason why Joe and I strongly recommend at the beginning that health care directives and health care proxies be attended to early on.

Joseph Nowinski: Yes, I had a personal experience just two weeks ago when my uncle died at the age of 84. And he was in a Veterans hospital here in Connecticut, and he had cancer, which was in remission and then about four months ago was found to have metastasized to his ribs. And he and my aunt had thought ahead, and they had these medical directives. And she had - he had signed over as much authority as he could to her because he was in the hospital, terminal. He knew he was terminal, had the estimated anywhere from a month to a few months to live.

And the doctors were recommending radiation treatment, okay? And this is a very typical story, right, Barbara? This happens all the time - or chemotherapy. Many people are given chemotherapy for just the weeks before they die. In this case, my aunt stepped up to the plate and she said, "No. We won't do that. There won't be any radiation therapy. There won't be any chemotherapy. There'll be only pain control."

David: Yes.

Joseph Nowinski: Which I think was what they would have wanted. But, as Barbara pointed out before, he was pretty debilitated by that time.

Barbara Okun: He couldn't fight for himself, and that's why you need to be sure - and you may have to revise who your health care proxy is, or your health care directives, as you get closer to the end, depending on how much time has passed and what the circumstances are. But Joe's making a very important point - is that the patient and the patient's family need to be active and assertive with the medical system about what they want and how they want it. And that's the wonderful thing about the hospice movement.

David: Yes. I've had some experience with that. You know, this discussion is putting me in mind of a very powerful and I think good HBO documentary called An Oregon Way of Dying. I think that was the title. I don't know if you -

Barbara Okun: I read about it, but I didn't see it, and I'm very familiar with the Oregon practices.

David: Yeah. They do have physician-assisted suicide there, where the physician is not in attendance but has given them a prescription that they can take or not take at their own choice. And they followed several patients and their families, and some decided not to do it. Some went and got the medication and then at the end didn't actually use them; they decided they wanted to pass on naturally. And some decided to go ahead and do it that way, and it was a whole family event. Do you have - do you want to comment on that? I believe Washington State has also -

Barbara Okun: Washington has more recently done that. I think Oregon and Washington are the only two states where it's legal now.

David: Would you want to see that spread? Would you want to see that spread or not?

Barbara Okun: I think it happens a lot more than people realize.

David: Sure.

Joseph Nowinski: Yeah.

Barbara Okun: If you have a relationship with your physician, which people often don't at this time because of managed care and because of the increased burdens on physicians. But I think it does happen. I think people take care of each other. I don't know whether - I shared this with Joe. I think I wrote some of it in the book. But my mother died, oh, I guess it'll be four years this coming year. She died a year after Katrina. She lived in New Orleans her last 50 years of her life. And she had come up to Boston during Katrina, and she was ill.

But then she insisted on going back, and she lived for about six months going back, and it was very, very hard for her because none of her friends went back, there was no medical system or anything else. But when the end came, when the hospice doctor said that it was just going to be a few days, I went down there. And it was on a weekend, and she was in agony. I mean she did not have a good death. She had a very difficult death. And when I called hospice to ask for some medication, they said, "I'm sorry. Since Katrina, we don't work on weekends."

So, and all my physician friends in New Orleans had left, so I called a friend in Boston and she helped me a little bit. But the point is I didn't have much there to help her with the pain. And fortunately, I did find some sleeping pills in my purse, because I had been in Kuwait teaching the week before. But I'm saying it was very, very difficult to see her screaming and yelling and saying, "Help me, Barbara. Help me, Barbara." It was just awful.

David: Oh, yeah.

Barbara Okun: And I know when my husband died six months later, the hospice nurse who was with us said to me - I asked her why she became a hospice nurse, and she said because she had seen too many people die agonizing deaths, and she didn't want that to happen.

David: Oh, yes. About a year ago my mother-in-law stayed with us during her last months, and the hospice was a tremendous help. So it's clear that you two are writing not only from an academic perspective and a research perspective, but also from your own experiences with death and dying.

Barbara Okun: Yes, I think that this book, the idea of this book, came from several of my physician friends who said to me, when I was dealing with my husband's death and the renewal part and making arrangements, that it would be very helpful if I did some research and turned this into something that would help other people prepare. So it's a book I wished I'd had, and many people I know who are widowed or widows or have lost a child have said the same thing, because it integrates the practical with the emotional.

David: That's right. It definitely does do that, and you touched on renewal. We haven't talked about that fifth stage yet, so, Joe, do you want to start us off on that?

Joseph Nowinski: Yeah, well, it starts with sort of a theme that we've touched on a little bit, which is the idea of how do you want to die. Again, some of the stories we heard were really heartbreaking in terms of the lack of communication, not knowing what someone wanted, being afraid to be assertive, and just leaving a lot of loose ends.

And so the opportunity here is like when you can - to resolve some long-standing issues and to plan for how you want to say goodbye: how you want to do that, who you want there, what kind of treatment you want, you don't want, be able to authorize people to make those decisions. And thank God my uncle had done that, because by the time we visited him, which was just less than 10 days before he died, the side effects of the medication, the pain medication, were very evident. I mean he was kind of somewhat delusional. He was hallucinating. He at one point asked me, "Do you see a dog on my bed?" for example.

And so in the renewal stage it really offers the opportunity for the family to kind of actually move on and become more resilient. It's like any crisis that you go through offers the opportunity for the family either to kind of weaken and break or fracture, or to become actually stronger. And that's what we talk about, and we give examples of families who had done that.

David: Yes, you do talk about resilience. And what would be your advice for building resilience?

Joseph Nowinski: Well, we talk about resilience because there is good literature that shows that trauma, like terminal illness or any other trauma, does not affect everyone equally.

Barbara Okun: The same way.

Joseph Nowinski: Yeah. And that there really are some personality differences in people and also in families that kind of determine that. And we defined that. We defined that. For example, the idea that life has meaning, that we're here for a purpose; that a crisis ought to be expected in life as opposed to some people who feel their life should be a smooth road - there are people, and when they hit a bump in the road, they kind of panic; that we can get through that, that it's possible to marshal resources and the best way to get through a crisis is to marshal resources; that this isn't happening to you - it's punishment, for example; that there are people who care about me that I can turn to. These are internal beliefs that have been found to be associated with people being able to survive a trauma better than others.

David: Yes.

Joseph Nowinski: For example, in any trauma, including people who go to war. We know that the incidence of PTSD is higher among those people, but not everybody gets PTSD.

Barbara Okun: From the same circumstances. Everybody responds to a crisis differently.

Joseph Nowinski: Right. The same thing goes for [crosstalk].

Barbara Okun: And you may find within a family that some people have more resilience than others. And those might be the people who assume leadership within the system when there are crises or difficulties.

Joseph Nowinski: And there are ways to actually build resilience, and we give people some tips on that. There's been some good research on that; that cognitive role-playing, for example, can be very helpful. And we give people some tips for how they can take a look at their own resilience and work on building their resilience by challenging their own beliefs.

David: Yeah, that's great. I've been following positive psychology, and this articulates very well a lot of the material that's emerging from the positive psychology movement. And, of course, Martin Seligman is actually working with the Pentagon to help train troops to be more resilient in the face of traumatic situations.

One of the real strengths of your book, as you mentioned, is that it mixes the emotional and the research-based with the practical. And one of the practical issues that you deal with is how to best communicate about death to young children. Maybe you can share something about that with us here.

Barbara Okun: Well, I think it's important to realize that children sense more than adults believe they do, and when something is going on, they may not be able to articulate it - or they may, given the fact that they're exposed via the media and TV much more than maybe adults realize. But it's very important to let them know what's going on in a way that's appropriate to their developmental level.

So we talk about, for example, if mom has - let's say she has breast cancer. It's important to say to the children that "Mommy's sick. She's going to go to the hospital for a little while, and so-and-so and so-and-so is going to take you to school, and grandma's going to do this, daddy's going to do that. But mommy's going to be tired when she comes home." And then at another time you might say, "Mommy may lose her hair, but she's still going to be okay. It's going to grow back." To let them know so that their imaginations don't create scenarios that are very frightening to them.

Joseph Nowinski: We heard that from many stories of people who told us that their parents told them very little about, say, grandma's death or whatever. And they really felt that they could have handled much more than their parents told them, and they wish that they had been told more. So I think that Barbara's absolutely right that kids know more than we think they do, and what they really need to know is how is it going to affect their lives.

Barbara Okun: That's exactly right.

Joseph Nowinski: They need to know that.

Barbara Okun: And it has to be gradual and continuous, but children do know about death. They've lost their turtle or their goldfish or a pet. And the other sad thing in today's world is that children know other kids whose parents have died or grandparents have died. So death is no longer something that just occurs in the aged population.

David: Well, some of us who are adults - I think many of us who are adults - we may have a friend who is ill and dying or may be close to family members of such a person. But we may suffer from a sense of inadequacy, not knowing what to say. How does - we, as adults, how can we be a friend to the person who is dying and/or to the family?

Barbara Okun: I think the most important thing is to let them know that you care and you're available if there's any way you can be of help. And I think it's also important, if the dying person is your friend or relationship, to let them know that it's okay; they can talk about it if they want to. I hear many people say that they get signals from people, their friends and family, that their friends and family are uncomfortable about talking about it. And they want to talk about it.

David: And sometimes people just disappear, right?

Joseph Nowinski: Yes.

Barbara Okun: They do, after a while. That's why I said that can happen in the upheaval stage. People just sort of rally around in the crisis, and then they disappear. Again, these Internet communication websites keep people connected in a lot of different ways, and it's important to be able to share and ask people for what you need, if you need a ride for treatment or for a test.

Joseph Nowinski: The other thing you can do to be a friend is to not make a vague statement, like "if I can do anything, let me know," because the ill person is not likely to take you up on that. Say "I'm bringing dinner over Friday. What would you like?"

Barbara Okun: Yes, of course. I meant in addition to the - absolutely. Or, "Can I take you to the doctor next Tuesday?"

Joseph Nowinski: Yeah. "When's your next appointment. We'll take you there."

Barbara Okun: Yeah. And for a lot of connections, the community of friends and family organize the schedule so that everybody's doing something some of the time. But that's why we ask people. For example, David, some people, when they're in the hospital, want somebody with them all the time. Other people really don't. They want a couple people, maybe one or two people, to pop in a couple times during the day. There's no right or wrong, good or bad. But that's why it's important to ask "Do you want me to be with you?"

Joseph Nowinski: Exactly.

David: Okay. Well, this all sounds like very solid and important advice. As we wind down, is there anything else that you'd like to say?

Barbara Okun: Well, I just think that we give Elizabeth Kübler-Ross lots of credit for bringing the topic of death and dying out of the closet, so to speak. And I just think it's important for us all to look at death as a natural part of life. We're all going to die, some time, some place, and I think when I ask people what they're afraid of - are they afraid of being dead or are they afraid of the process of dying - most people tell me they're terrified of the process of dying. They're afraid they won't have control. They're afraid it's going to be torture. And I think by talking about it we can reassure people that they will have more control. They can choose to have more control than they may [audio break].

Joseph Nowinski: What I've gotten out of - from so much of the feedback I've gotten, is that what we hope the book has done is help bring this out of the closet, so to speak. This is something that we all are going to face, as Barbara said, so whole families are facing this. We all either have been there or are going to be there, and it's been sort of a taboo subject. And so many families have written that - or even have told us - that it was the inability to communicate that made it so much more worse. So we hope that the book helps people to do that.

David: Well, I think it certainly will. Were you trying to get in one last word here?

Barbara Okun: I wanted to make one other comment. I have had several patients in the last week who actually came to see me the week their parent died - these are adult patients with adult parents; who had given themselves as primary caretakers to this parent, been promised some remuneration for leaving work and leaving their families, and then have been shocked to find out that their brothers got everything and not they. And, again, the bitterness and what it does to their relationship with the deceased parent is so awful, and it's so sad when people are deceitful and don't talk about these things in advance. So we need to think about what legacies we want to leave - not just financially, but emotionally and psychologically.

Joseph Nowinski: Exactly.

David: Okay. Well, thank you so much for all that you've shared here. Dr. Barbara Okun and Dr. Joseph Nowinksi, I want to thank you for being my guests on Wise Counsel.

Joseph Nowinski: Our pleasure.

Barbara Okun: Our pleasure. Thank you very much, David.

David: I hope you enjoyed this conversation with Drs. Barbara Okun and Joseph Nowinski. The title of their book once again is Saying Goodbye: How Families Can Find Renewal Through Loss. I think this is a book that probably every family should own. It's in a very prestigious Harvard Health Publication series, sponsored by the Harvard Medical School. It's got lots of solid, practical information that will come in handy sooner or later during that inevitable time of crisis. By the way, you'll find their website at www.newgrief.com (as of 7/15/14 no longer available).

You've been listening to Wise Counsel, a podcast interview series sponsored by Mentalhelp.net. If you found today's show interesting, we encourage you to visit Mentalhelp.net, where you can add a comment or question to this show's web page, view other shows in the series, or simply page through the site, which is full of interesting mental health and wellness content. Access the show's page and show archive information via the podcast box on the Mentalhelp.net home page.

If you like Wise Counsel, you might also like ShrinkRapRadio, my other interview podcast series, which is available online at www.shrinkrapradio.com. Until next time, this is Dr. David Van Nuys, and you've been listening to Wise Counsel.

Links Relevant To This Podcast: .

  • www.newgrief.com (as of 7/15/14 no longer available)

About Barbara Okun, Ph.D., and Joseph Nowinski, Ph.D.

Barbara Okun, Ph.D. Barbara Okun, PhD, is a professor of counseling psychology at Northeastern University and a clinical instructor at Harvard Medical School. She has maintained a clinical family therapy practice for over 30 years. Dr. Okun is the author of several books on issues affecting families, and she is a columnist for The Family Psychologist, a publication of the APA. She has trained family court judges in family systems perspectives at the National Council of Juvenile and Family Court Judges and mental health workers in Israel, Kuwait and Central and South America. Dr. Okun’s latest book is Saying Goodbye: How Families Can Find Renewal Through Loss (Penguin, 2011), which she co-authored with her colleague, Joseph Nowinski, PhD. Their website is www.NewGrief.com (as of 7/15/14 no longer available but you can find information about Barbara Okun, PhD here.)

Joseph Nowinski, Ph.D. Joseph Nowinski, PhD, is a psychologist with more than 20 years counseling individuals and families. He has held positions as assistant professor of psychiatry at the University of California, San Francisco and assistant adjunct professor of psychology at the University of Connecticut. Dr. Nowinski is the author of several award-winning books and the principal author of Twelve-Step Facilitation Therapy, selected for inclusion in the prestigious National Registry of Evidence-Based Programs and Practices. Dr. Nowinski is a regular featured blogger for HuffPo. He is the co-author, with his colleague, Barbara Okun, PhD, of Saying Goodbye: How Families Can Find Renewal Through Loss (Penguin, 2011). Their website is www.NewGrief.com (as of 7/15/14 no longer available but you can find information about Joseph Nowinski, PhD here.)

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