Spirituality and Cancer: What Patients Want to Discuss Video Transcript

Achieving Communication Excellence (ACE) Lecture Series
Dr. Lois Ramondetta
Spirituality and Cancer: What Patients Want to Discuss
Date: November 3, 2009
Time: 55:59

Lois M. Ramondetta, M.D.
Associate Professor, Gynecologic Oncology
The University of Texas M. D. Anderson Cancer Center

 

 

Dr. Baile: I'm Walter Baile and I'm Director of the I*CARE program, the Interpersonal Communication and Relationship Enhancement program and it's my pleasure to sponsor this lecture today by Dr. Lois Ramondetta. A few announcements that if you notice from the slides up here preceding the lecture we have a Web site [inaudible] okay. We don't want to give away the slides too early, so, here we go. I won't touch anything now, which is www.mdanderson.org/icare and on this Web site we have 15 free online CME opportunities just by viewing some video around clinician-patient communication and also 16 Risk Management Education opportunities for you, those of you who need them. Dr. Ramondetta and all of the ACE lecturers are streamed online so that if anyone wants to go back and see some of the past lectures which are quite interesting having to do with clinician-patient communication, they're right there and there's also a brochure outside which outlines some of the activities that our group is involved in. So in addition to your receiving free CME and Risk Management credit for the lecture today we're also offering free Continuing Nursing Education for all nurses. So please sign in for that and please complete your evaluation form as this is our quarterly evaluation by our CME office and your comments will really help us direct some of the lectures to what you're interested in, in the future. Lastly, please turn off your cell phones and put your pagers on, on vibrate.

So it's my great pleasure today to welcome Dr. Lois Ramondetta as our speaker for the Achieving Communication Excellence series. Dr. Ramondetta is Associate Professor in the department of Gynecological Oncology at M. D. Anderson and Director of the Gynecological Oncology service at Lyndon B Johnson General Hospital in Houston. Lois received her undergraduate training at Emory University where she distinguished herself in receiving degrees in religion, biology and lay chaplaincy. She has a very unique educational background. She did her medical training at Robert Wood Johnson Medical School in Piscataway, New Jersey and finished her medical training with a fellowship in gynecological oncology at M. D. Anderson Cancer Center. Lois joined the faculty here at M. D. Anderson in year 2000 and since that time her interests have been broadly focused but also as you will see interconnected. She's been involved in conducting clinical trials for cervical, endometrial, and ovarian cancer patients and is especially interested in addressing the issue of ethnic disparities in cancer care. She's also focused her professional activities on publishing and teaching in the areas of psychosocial, ethical and spiritual aspects of oncology. She's served on the American College of Obstetrics and Gynecology Ethics Committee and ASCO's Ethics Committee as well as M. D. Anderson's Ethics and Psychosocial Committees. She recently had two major professional accomplishments first an acclaimed book written together with a patient of hers who became a friend entitled "Delight Within" which explores the issues of spirituality and relationship possibilities between doctor and patient and more recently honored as being the recipient of the Julie and Ben Rogers Award for Excellence in Clinical Care and today she is going to talk about spirituality and cancer.

[ Applause ]

Dr. Ramondetta: Thank you. It's my pleasure to be here and I hope I have some new information for you as well I would love to hear some feedback at the end of the lecture so that we can expand our discussions because I don't think that anyone has all the answers to this and as I've asked other people before about what they think spirituality and religion is, everybody really has a different definition and probably everybody has a different idea of what I'm going to talk about today. I can use this. So religion and spirituality, why discuss it at all? There was an excellent article that I have to confess came out just a few days ago in the International Journal of Palliative Care that actually talked about a consensus project for improving the quality of palliative care and some of this lecture did come from that because it was just so all inclusive of everything that we would like to approach in spirituality and, and patient care. But these are a few examples of, of articles that have been published in peer review journals that suggest that spirituality is important in medical patient care. Spirituality has been shown to be a patient need, spirituality has been shown and there're obvious examples of affecting healthcare decision making, spirituality affects healthcare outcomes and spiritual and religious beliefs can create distress and we'll talk about some specific examples.

Throughout this lecture you'll see some of my hand collection that I, that I think that I've kind of done as I traveled around the world and I've enjoyed collecting them and I had to share them with you. The recommendations from the National Consensus Project for Quality Palliative Care suggests that spiritual care should be integral to any compassionate patient-centered healthcare system and the spiritual care model should be based on honoring the dignity of all people and compassionate care. Spirituality should be considered a patient vital sign like distress and integrated into all intake policies and ongoing assessments. And that spiritual care model should be interdisciplinary and we'll talk later about who actually should be asking these questions.

What, what is spiritual care? To ask that we really have to ask again what is spirituality and again if I asked all of you what your definition of spirituality was I suspect it would be different, but I'm going to share a couple of definitions. Both of these actually come from the NCI Web site. Religion is defined as a specific set of beliefs and practices usually associated with an organized group. Spirituality on the other hand is an individual sense of peace, purpose and connection to others and beliefs about the meaning of life and, and in my interpretation this, in this sense spirituality is about existential growth. The 2009 consensus conference that I mentioned earlier actually was a group of physicians, social workers, PhDs in the field of spirituality as well as chaplaincy that got together and, and defined spirituality altogether something that they would all be happy with and William Duffy actually a member of our faculty was on that committee.

Spirituality is defined at the consensus conference as an aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectiveness to the moment, to self, to others, to nature, to the significant or sacred. In that sense religion is a small portion of spirituality. You can be religious and spiritual, you can be religious and not spiritual, you can be spiritual and religious, or you can be both. I'd like to think a religion and spirituality in, in, in what has been described as a vertical dimension and a horizontal dimension to really kind of encompass all the things we've been talking about. You think about religion as the vertical dimension of spirituality, a perception of a relationship or connection with a higher power. In contrast to the horizontal dimension one's perception of life, meaning our purpose and satisfaction apart from religious reference, it is easy to understand how this can be approached in many different ways. What we're going to cover today is what patients might want us to know and I'm sure the list is broader than what I'm going to include. Benefits of religion and spirituality, well, well being, spiritual well being, as well as the benefits of the assessment of religious and spiritual well being into medical care. How and when we should ask about religious, religion and spirituality, whose job is it, anyway, and how can we improve spiritual support and briefly what does this mean? Well, what do patients and families want us know? I think there're really probably three major categories. One, that their beliefs may affect medical decisions and we can think of obvious examples of this. For instance, the most obvious would be the right to life. They may be in spiritual, that the patients may be in spiritual crisis or psychological distress and that they are in need of spiritual support. But really I think it all comes down to is that they really just want us to know them.

Spiritual needs are varied. This is from an article from Psycho-Oncology in 1999, patients want help with overcoming fears, finding hope, finding meaning, finding spiritual resources and finding peace of mind which is really what I consider the ultimate endpoint for both the patient and the caregiver. Seven categories of spiritual needs were shown to include relating to an ultimate other, again that sense of vertical spirituality, the need for positivity, hope and gratitude, the need to give and receive love, the need to review beliefs, the need for meaning, and the needs related to religiosity and preparedness for death. They want us to know that they have spiritual and existential concerns that they have fears that they want to overcome. It could be fear of pain, fear of abandonment by their family or by you, the caregiver, and guilt about their actions.

Specifically one thing that I, I think stands out for a lot of patients that I care for is that for cervix cancer and the relationship to it being a sexually transmitted disease, I believe there are issues that need to be addressed with patients in terms of their concern about whether or not they've gotten Pap smears and how they got a sexually transmitted disease. Fear of sorrow and loss, loss of faith, loss of their life, and fear of the after life. Also they want us to know that they matter and they may have forgotten this that they value their life, that they are loved, that their life has meaning, that they're not just another patient to us and that we as the caregiver will not abandon them. They also want us to know that they may have religious concerns, that they feel abandoned by God, that they're angry at God, they want to know why this happened to them, what they did to deserve this, and these are, every patient is different, that they have conflicted relationships about their belief systems, that they have despair or hopelessness, grief or loss, a need for forgiveness or reconciliation, the need for religious rituals in certain religions and perhaps a loss of faith.

And a patient, in just briefly in some patients that we looked at in our own clinic, we're specifically looking at barriers to cervix cancer patients getting the Pap smears appropriately and many of the patients that we see out at the county have not gotten Pap smears on a regular schedule and a lot of these issues are financial and, and difficulty in negotiating the system or navigating the system. But when we ask the patients about when they were told they had cancer, 36% of the patients were afraid of what others would say, 50% were fearful that the surgery would make their cancer spread, 21% had feelings of guilt, 24% had spiritual concerns which I think encompass all of what I've just said and 27% were fearful of prognosis and dying. We also looked at in a comparison one of the reasons that I've still been interested in this is that I take care of patients both at M. D. Anderson and at LBJ and I, I feel like there has been a different way of approaching illness partially because of the social circumstances or the financial circumstances, but also sometimes what I see is actually a really good sense of serenity and peace of mind at the county as compared to here. So we started to ask similar questions of ovarian cancer patients when they presented at first diagnosis of ovarian cancer and asked some questions about hope with validated surveys and this data hasn't been published yet but the abstract's been submitted.

Of course, the racial differences between the county and M. D. Anderson are different but interestingly when we looked at race that really wasn't the reason, it was the site and so socioeconomic status may be the explanation for this. But interestingly, the hope/hurt scale was significantly worse in total score for county patients. In addition, results from surveys evaluating spiritual and religious coping included higher religious intensity and higher intrinsic religiosity in the county patients but did not reveal any difference in the fact spirituality and it's interesting that both the Hoag and the Fetcher scale that I've just mentioned both really evaluate spirituality in terms of religiosity in comparison to facts, spirituality which seems to be more just a sense of well being. But we're still exploring this and we're trying to learn where we need to intervene to try to help patients have a better sense of hope when they present in difficult circumstances. We already know spiritual and religious well being will be associated with improved aspects of quality of life. We know that it reduced anxiety and depression and, and I'll go through some of these articles, reduced sense of isolation, increased stability to enjoy life, personal growth, augmented recovery, improved stress control through better coping skills and that it correlates with better social support. I'm going to raise the question of whether or not there may be improved health outcomes outside of quality of life. There can be constructive religious coping. In cancer survivors interestingly this was from China, patients at risk for psychosocial maladjustment included those who were treated surgically, who were less educated and for those who did not claim to have any religious belief.

A, Dr. Canada who was actually here and now is somewhere in the northwest of the country showed that religion and spirituality were associated with active coping where in the passive and considered perhaps detrimental and more associated with passive coping and it was associated with overall quality of life, emotional and functional well being, fewer ovarian cancer specific concerns and ovarian cancer patients receiving palliative therapy, psychosocial issues were more common than physical ones. Improved satisfaction with care and this is important for us to pay attention to, if the doctor even spent just a few minutes asking about spirituality or what gives meaning to the patients' lives and that spirituality especially a sense of meaning and purpose is associated with less distress for terminally ill patients. It's not always good though. There can be destructive religious coping. Negative religious coping is associated with distress, confusion, and depression, young ones with advanced disease who use more negative spiritual coping perhaps guilt or abandonment had greater tendency towards depression and anxiety. Thoughts may be related to a punishing God, abandonment by God, fatalism which is something that has been a concern especially among Hispanic patients in terms of getting their Pap smears, unhealthy personal guilt, magical thoughts, and dependency too much on miracles and fanaticism.

We know religion and spiritual beliefs affect medical decisions. We know from the obvious that I mentioned before that patients who use spiritual coping are also less likely to have a living will and more likely to desire life sustaining measures. Belief in a divine intervention, turning to a higher power for strength and support and guidance and using spirituality to cope were associated with a preference for CPR, ventilation, and hospitalization in the near death scenario. They may influence a decision agree to a DNR or hospice referral. It may influence the decision to use chemotherapy or other life saving treatments and may conflict with medical care. Other examples, declining traditional treatment and choosing alternative treatment for prostate cancer, health seeking behaviors specifically in African-American women, Jehovah's Witness and blood transfusion again an obvious example. The sense of the purpose in suffering and the, the lack of use of pain medications in order to experience that and predictors of organ donation.

What I'm trying to say is that it's important to ask. So if we know it could be helpful to ask, do we ask or we don't. 72% of patients report that spiritual needs only are, only minimally or not at all supported by the medical system and in a survey that we did unfortunately it was a very poor response rate, but with hundreds of responders, we asked do you take a spiritual and religious history on your patients. Well, 65% never or rarely, 25% sometimes, and 9% frequently or always. On the other hand when we asked the physicians do you consider religion and spirituality of the patient when discussing end of life issues, 75% said they did which is pretty interesting because they didn't ask. And religious and spiritual beliefs are a source of comfort to them as oncologists, well 62% agreed or somewhat agreed. Interestingly, when you ask the doctors does religion, do religion and spirituality help them deal with feelings about death, 68% agreed or somewhat agreed. So when to ask and why ask, this is a neat article done by a family practice group that really showed that 83% of patients in difficult circumstances wanted to be asked about spiritual and religious beliefs by physicians in at least some circumstances. Scenarios that they listed included life-threatening illnesses, obviously cancer being one of them, serious medical conditions and loss of a loved one and this was in contrast to a daily, a regular healthcare visit, and they didn't want to be asked in those circumstances. Why did they want to be asked? They wanted to be asked because they, this is what they said, "a desire for improved patient physician understanding." They wanted, they believed that if the doctors had this information that the doctor would have an improved ability to be compassionate, understand them better and understand how to make medical, understand how the patient makes decisions.

Spiritual assessments can include all sorts of questions. You can just ask simply religious denomination, beliefs on philosophy of life, important spiritual practices or rituals, the use of spirituality and religion as a source of strength, do you participate in a religious community, it goes on and on. In fact, JHACO actually has a requirement that we ask. Do they tell us how to ask? They don't. They actually say examples of elements that could be used, but are not required to include, who or what provides the patient with strength or hope, does the patient use prayer in their life, how does the patient express their spirituality, how would the patient describe their philosophy of life? What does dying mean to this patient? And they really don't get much more specific than that and so JHACO is happy with the requirement in our patient assessment sheet of the one question about do you have any spiritual concerns. From the consensus that I mentioned at the beginning which again was published in The International Journal of Palliative Care by Pachowski in 2009, it suggests that we should be integrating spiritual history just like we do social history, just like we do family history into the context of the comprehensive exam. And that this questioning can be done by the nurse, by the MD, by a social worker or any other clinician and that it should be documented in the medical records. It's important to recognize that as I've said to many people that your spirituality right now is probably not the same or how would you define your spirituality now is probably not the same as you would have defined it 20 years ago and may not be the same as it would 20 years from now or may even be different if you got diagnosed God forbid with cancer tomorrow. And so it's a fluid experience and the questions, it's not a one time history intake, its multiple questions about what gives that person's life meaning. And that really it should be included in the discharge plan just like psychosocial distress.

The goals of taking a spiritual history are to learn about the patient's beliefs and values, to assess for distress, to provide opportunity for compassionate care, to empower the patient to find inner resources of healing and acceptance and to identify spiritual and religious beliefs that affect decision making. You may identify practices that are helpful in coping and specifically when patient, when, when doctors are told that they should ask these questions. The most important point is to realize who needs referral to someone who knows these issues better than you. So there's really two aspects, there is a spiritual screening or triage and a history taking versus a spiritual assessment and the two people who the types of people who should be taking them vary. Spiritual screening and triage are the ones that can be done by anybody, a doctor or nurse, a social worker, any clinician that's involved in patient care and it's really a quick determination of whether the person is experiencing a spiritual crisis. The spiritual assessment really should be done in many people's views just by board certified chaplain, there are also psychiatrists that actually specialize in this area who also could easily do a spiritual assessment. This is an in-depth assessment. It's based on interpretive frameworks, based on listening, it includes a life review, assessment of hopes and fears, a more thorough evaluation of meaning and purpose, beliefs about an after life and fear related to that, guilt and forgiveness issues as well as life completion tasks. There are many acronyms that have been designed to try to help people figure out how to get started and I usually kind of talk about this like when the fellows come out of their training and they've learned how to do a couple of radical hysterectomies that first couple that they do never go, go where they were supposed to go and so you have to do a whole lot of them to work through all the issues, that's the problem with these scripts.

The scripts only work as long as anyone, everyone says exactly what they're supposed to. If they don't answer the way they're supposed to, you're going to have to negotiate how to, how to do that and one of the most important things to recognize is that a lot of reflective work needs to be done on your own beliefs in order to get through without... to have a thorough evaluation. So FICA was described by Pachowski who runs the Jewish Foundation and she described it just to remember in your head if you want to do a brief history of first ask the faith or belief that the patient follows, the importance that that faith or belief has in the patient's life, whether the patient is a member of the religious community and asking if the spiritual issues need to be addressed in care or if there are any. Another option would be the spiritual history, also spiritual belief system, what is your spiritual belief system or your religious belief system, what do you describe as your personal spirituality, your, how do you integrate with your spiritual community, do you have ritualized practices and restrictions, what are the implications that I need to know about as your caregiver for medical care and are there aspects such as a living will and power of attorney and DNR code that might be affected by your spiritual beliefs. And lastly, another acronym, hope, what is your sense of hope, do you belong to an organized religion, do you have a personal spirituality that you could describe for me and how do you think these beliefs will affect your healthcare decisions. There are many other questions.

I actually don't use any of these and when I did a few survivor support groups and I showed the survivors these, these scripts, they said that they would be very uncomfortable with something that was that formal and that they would be very uncomfortable if their physician was asking questions like this. Their first question would be why do you want to know these things. So actually what I usually ask is how are you coping and, and I think that that actually opens it up to the patient answering you know whether they're having difficulty with their family, with their daughter, with their husband, specifically with their church. Usually it takes a few more questions to get to that point where you might ask what helps you cope or what, what is harmful to you and it might be their sister or it might be their, the fact that they can't get to their church any more or for instance their colostomy bags made too much noise and they're embarrassed and they won't go anymore and they've lost that support system. Other easy questions to ask is how has this illness impacted, how you think about your spirituality, what aspect of your life is most important to you, and these are incredibly important and, and I'm going to back up this for a second because I, I think that there are certain medical specialties where this fits in a little bit better. GYN oncology which is the, the first that I'm a member of I, I believe is a, a very special form of oncology care. It is the only oncology specialty that does both surgery and chemotherapy and unfortunately the majority of our patients are advanced ovarian cancer patients which unfortunately have no early warning signs and often time present with what's considered a 15% 5-year survival.

And so you have what's ahead of you when you meet this patient of 5 to 8 year period that you're well, let me back up, a 1 to 5 year, 8 year period if you're lucky of knowing a patient where you know they're going to go into remission in almost every circumstance, but you also know they're going to come out and that each step of the way, every, everything that you do at that point is only a balance between what, what is quality life and what is not. And so yes there are endless numbers of chemotherapies that you can give that have as low as 10% response rate, but do you have to do that in every circumstance? On the other hand I think that this puts the GYN oncologist in a difficult position where I think sometimes it's a little too much involvement and you never really get a second opinion. For instance the medical oncologist wants to know if their ovarian cancer patient patients needs surgery, they send them to a surgeon who gets to kind of look with fresh eyes at this patient that they don't know and I think that they, that one that reflection on a part of the physician is important to understand whether they're projecting or having issues about maybe I could have done better versus really knowing what gives meaning to that person's life. So I think that's the reason that these are so important.

Do I think that it's important for every physician to ask? Not necessarily and I'll talk about that later, I do believe that is important for someone to ask. Are spirituality and religion important in your life and how well are those resources working for you at this time? This was an interesting article published in JAMA in 2006 by Dr. Somasi, who I believe also has a religion degree. He talked about how one of the reasons that physicians and caregivers don't get into these questions is because they don't know how to get out of them. What do I do if I open up Pandora's box and I've got all these theological issues in my, in my face and I don't know what to say? They might be sensitive that the conversation is running too long and they're late for the OR, or that the physician is overwhelmed by the content. This was something that he suggested would be okay to say, this was a really neat article if you can pull it. I can't do everything that's why we work as a team, I think we've covered some very important ground here, but there is so much more to talk about. If it's okay with you I'm going to send either Reverend S, or a therapist to see you later today and also I'd like to tell him or her a little bit about what you've just shared with me so he can better, be better prepared and would that be okay? Again I think just the time spent in asking some questions about what gives your life meaning is so important. So whose job is it to ask? I said anyone can ask them, I'm just going to skip ahead for a second.

This was described as 8 domains of palliative care and it's interesting how they listed this. In terms of palliative care which really again I remind you starts at diagnosis, goes all the way through, so not necessarily only to be done by the palliative care physicians involves the structure and process of care, the physical aspects of care, the psychosocial and psychiatric aspects of care, social aspects of care, spiritual, religious, existential, cultural, care of the imminently dying and ethical and legal aspects of care. Well, really these kind of cross all boundaries. It's interesting that spirituality kind of got pulled out there because it, it separates it from psychosocial and psychiatric and I think that that's a difficult thing to do in addition to the many other areas where it overlaps. But really as we defined in the beginning, spirituality is neither exclusively religious nor secular, it's an interdisciplinary responsibility. We suggested that it can deepen our relationship.

I believe that it improves trust with the patient and it also improves informed consent because how can you possibly offer the ovarian cancer patient her third line recurring ovarian cancer chemotherapy if you don't really recognize what she might want to do with, with her life that she has ahead of her. In two studies interestingly 83 to 94% of patients describe themselves, describing themselves as religious, wanted the physician to be the person who ask them about their beliefs. I would suggest that, that spiritual medicine actually involves many different aspects. We talked about it being interdisciplinary, it involves, I think it has to involve medical knowledge, meaning that that chaplain who approaches spiritual beliefs really also needs to know the medical history, and can't just approach just with theological understanding. That there should be an understanding of philosophy and meaning of life, there should be an understanding of what's positive and negative, psychology and, and coping, and that there should be an aspect of theology and images of God and that's something that I'm not sure clinicians can do because we haven't been trained. I believe that it really all boils down to recognizing equality in an unequal relationship and, and that's a picture of my daughter with Deb the person I wrote the book with's mastiff at the time and I thought that was a pretty good example of unequal relationships.

But the point is, is that in terms of medical knowledge there isn't unequality. There are things that we can present to the patient that, that the patient will not be aware of and that requires us to use words that are understandable to them, but the aspects about what happens to you after you die, how you, how you value the meaning of your life, this is where the quality sets in and that it is about sitting and listening and, and asking questions without having to know the answers. One healthcare provider cannot be all things to all patients. We need to recognize deficiencies in the patient's care. So recognize where there is a spiritual struggle or a psychological struggle or a family struggle. We need to recognize the opportunity to improve these situations. Again I'd like to ask questions like what gives you strength and how are you coping and then we need to integrate the other members of the care team who are appropriate and I notice that many members of my team are here and I have a great APN with hospice training who definitely takes care of many of these issues where I do not. So how can we encourage patients to use spiritual support and who and what might this include. The chaplain is obvious and I very often ask them and one of the things that's a little bit scary sometimes is when you ask a patient if they want to see a chaplain especially I notice out of the community they get very nervous that they're going to die, so it's important that you say I really do notice that you, you're feeling a little bit stressed and would you, would it be helpful to you to have a chaplain come to see you and kind of explain some of your concerns or would you rather have someone from you own community coming, can I help facilitate that.

There are aspects of anxiety and depression and perhaps even spiritual stress that a therapist or psychiatrist should be involved with and we have we're just blessed to have as many support services that we do have here. And then obviously many hospitals not all are very lucky to have a palliative care department where they actually try to bring this whole group together to address these issues for the patient, but not everybody has them and, and I would say again to recognize that these are all aspects of the team, it's not something that you hand off that the physician who is treating the patient should absolutely have these conversations, otherwise it's a very dry stoic relationship and it's hard to make decisions about where to go forward. So the intervention that you might suggest depends on individual needs.

The goals of any assessment are, one, to identify the goals for care and medical decisions that are consistent with the patient's views and to enable the doctor to maintain their own integrity. This comes up where there are conflicts and ethics needs to be involved. We need to be respectively supporting the patient's use of spiritual coping if it's beneficial to them and this is through often times compassionate presence, reflective listening and sitting with the patient. You want to encourage the patient to speak with their clergy or spiritual leader or your own hospital chaplain or perhaps even just a support group and then referring the patient to other therapies that have been shown to him for spiritual being including mindfulness, relaxation and creative arts programs. The goals are really to acknowledge suffering, to encourage a search for meaning, to strengthen connection with others, not only the care, not only the patient's family and their spiritual beliefs but with the, with their caregivers and to ensure optimal physical care. I'd like to use these quotes from Deb to really talk about how this is really a fluid experience. This is not something that changes people even with their, once they're diagnosed can change the way that you look at their diagnosis over time. So in her words cancer causes confrontation of limits. For some, it is a state of shock. You experience this as recognizing there is something in you that has the capability of destroying you.

Early on in my diagnosis it was a kind of other. It was better this way because I thought I could beat that. Later on living with this thing yeah I could go there but that would make me really crazy knowing that it will eventually overtake me. It causes a separation between my body and my mind. To live in that place knowing what I know now that'll eventually overtake me. It's a different way of living with it then when I was living in that in between when I thought I was going to beat it, thinking that maybe we could kill it and maybe I'll be done with it. Now it's my way out and a very interesting set away is the metaphor my way out of having to do things I don't want to do. Its part of me now, it's my dharma, the life I'm living, it's the life I have, it's my way of going. You can kind of see that you know she had cancer for eight years and during that time she actually was able to change the way she looked at it so she was able to move forward and live life to the fullest and that's the ultimate goal of really any of the care because once you've got recurrent cancer in many cases you're not going to cure it and so if you can try to help somebody live their life to the fullest, that's probably the very best thing you can do.

So what are the possible interventions? There are easy ones that we can address. Obviously, close, you know dot the Is and cross the Ts and pathways designed to review care goals, completing unfinished tasks, do they need to do their well, do they need to say things to family, do they need to write letters to children that they might not be able to talk to in the future. One of the best things that people can be offered especially in areas where you might have limited support is a journal. Ask them to write things down, rumination is a problem for all of us and one of the best things that you can do is write it down and, and let it kind of leave the circle that's going on in your head. You can just address the five domains of quality of life, you can address negative religious coping with the chaplain intervention or therapy, you could address anxiety and depression perhaps with medications or counseling, you could offer transportation to church and help try to find community support services like CAN Care who might be willing to help the patient at home or you could refer them to the wellness center and suggest there are meditation, breathing exercises, massage, yoga, music and arts therapy that might be helpful to you.

There are more detailed areas of spiritual interventions and, and these are really the four main guys in the United States who've really worked on meaning based interventions for patients near the end of life. Life review is actually a pretty neat concept where they spend hours with the patient reviewing their whole life and making them something they can see, a video or, or a photo album something that they can really see that their life has had many different aspects and many different things happened during their life that they can be proud of and, and have good memories on. Demoralization syndrome Kissane specializing in that area and talking about really again recognizing that your life has had meaning. Dignity therapy from Chochinov and the meaning of center group therapy which is based on Frankl's logtherapy and we recently had a talk about this in our department but if you haven't read Man's search for meaning I highly recommend it and Breitbart at Memorial Sloan Kettering has done a lot of work in trying to develop unfortunately an eight-week program that incorporates meaning center group therapy and patient care. Unfortunately, logistics of that are difficult here because patients are coming and going and often don't have eight good weeks. This is more of a chaplain intervention, four step method to spiritual coping interventions, talking about preservation and support of and affirmation of good religious beliefs, reconstruction of contradictory religious beliefs, why do bad things happen to good people, reevaluation of life goals, now that you have a shorter life expectancy and recreation if lacking of coping skills, arrange for spiritual counseling and perhaps addressing issues like forgiveness. And again I don't think that the clinician necessarily should be doing any of this as it requires theologic training and I think that the chaplains are probably the best for this area. Imagine if medical care also meant helping a patient to live and die in a calm, happy, peaceful state of mind.

Sometimes I sit there and think that why are we talking about this because this is really this is really just another concept of compassionate care or empathy and understanding with the patients there and why isn't this being addressed in every circumstance and why isn't just understanding that that should be one of your issues is, is the patient, does the patient have peace of mind with whatever you are doing. So this is just for a thought. Psychosocial intervention seemed to have a slight impact on well being, quality of life, and depression but not necessarily on survival. My question to myself often is, is this any different than adjuvant radiation or third line chemotherapy and one of the things that I, I have stressed myself about is the research that I'm doing in terms of looking at spiritual coping, is this real research? I just don't, I, I feel like I'm, it helps me, it helps me understand what we're doing and I feel a lot better about it than when we're studying a third line agent that really isn't going to have a good response rate. I hope that didn't sound too negative. Is it more than quality of life? Some of the most interesting data that's come out of I think M. D. Anderson recently is from Dr. Sood's lab which looks at effects of stress on vascular and endothelial growth factor and although we are all familiar with kind of the cortisol flight or fight response and, and the negative effects of stress, we're really learning a little bit more about how this might play a role in cancer treatment. So the first article was by Pramod Thakar and from Dr. Sood's lab in Nature Medicine in 2006 and what Dr. Sood and Dr. Thakar did was take mice and stress them by keeping them in very closed quarters. They're able to eat and drink when they need it but they weren't able to move freely and be with their friends and then they, they killed them and they looked at vascular and endothelial growth factor as well as cortisol and other stress responses and saw very high levels of stress in those mice compared to the ones that were happy. Then they put tumors, ovarian cancer tumors in those mice and the mice who were stressed had very fast growth of their ovarian cancer compared to the mice that were free.

I'm going to just mention my new favorite book is the Anti-Cancer Book and he mentions another study similar to this where they have three groups of mice, one that, that moved freely and drank and one that had all the food and water but they got zapped whenever something, without any warning and the last one which was mice that got zapped but learned how they could learn how to dislodge the zap, they could press a button, they wouldn't get zapped. When they put tumor cells in those mice, surprisingly the mice that did the best where the ones that could dislodge their stress. So it wasn't the fact that they didn't have stress in their life, it was the fact that they can control it and I think that's a really strong important goal for us.

So there's been lots of research on perhaps blood pressure and stress response. Dr. Koenig at Duke has done most of this work. A lot of this has not been done in cancer patients seems to show that self-reported religious and spiritual being or frequency of prayer, levels of forgiveness and attendance at church services were associated with lower blood pressure males, elevated blood pressure females and lower cortisol responses in many studies. I don't really know what to do with this and I usually use Garrison Keeler's quote that says you know just because you're sitting in a garage that doesn't make you a car. So I don't really know how to encourage somebody to get more spiritual or whether or not going to church actually does anything for them. I'm, I'm wrapping it up now, but one of the definitions that I'd like to use is that spiritual experiences in the medical setting occur when caregivers and patients sit together. The relationship level by the admission that they don't know, humbled by the recognition of their mortality and all the inevitable forces around them and I think it's really that sense of equality as a human being is what we're really talking about and if you don't ask these questions then you never get to that point and it's just so rewarding.

One other aspect that came under the consensus report that just came out which is something that I feel like I've known for long time is that spiritual assessment or asking these questions can be a mutually transformative experience. Lydia Shapira wrote an article called the Existential Oncologist a few years ago in JCO which really talks about how you that how she is changed by every patient she meets. And that this transformative experience happens because you've listened, because there's a sense of solidarity with the patient, that you have mutual spiritual growth, that you have deepened the relationship not just asking questions and walking out of the room but you, you recognize that their face is crunched and that you say you look more stressed than you normally do, what's going on that you've accepted uncertainty with the patient, that you've touched the patient physically and that you've addressed spiritual pain and counter-productive attitudes and you've encouraged beneficial coping methods and perhaps learned something about yourself while doing it. Frankl talks about how we can discover meaning in life by creating a work or deed and I would say that we're trying to help the patient find meaning but in the effort of trying to do so we've done that, we've created a work or a deed for ourselves that we'd experience something or encountered somebody, someone truth, goodness, beauty, nature, culture, loving someone else and by the attitude we take towards unavoidable suffering, turning a personal tragedy into a triumph or human achievement.

One of my interests is how does a physician's religious and spiritual beliefs influence medical decisions and the ability to assess spirituality. We asked gynecological oncologists about how they ran their end of life conversations and interestingly 92% thought that patient should be able to make end of life choices but 44% thought it was important to influence the way the choice is represented and I don't think any of us can deny that even if you want something from your husband that the way you present your conversation might change the way the outcome is there. 54% believe that the gynecologic oncologist controls the outcome of the discussion. Interestingly a physician's religion correlated with less fear of death and less discomfort, we tried to look at this a little bit further. Recently we've polled some international gynecologic oncologists and we looked at work related stress. Interestingly, work related stress or increased work related stress did not correlate with religion, self-categorization, the DUREL which is the measure of religiosity or gender and qualifying that atheists had no more work related stress, stress than others, but it did correlate with age, younger people have more stress and it did correlate with a validated survey on death anxiety. Younger patients also had more death anxiety interestingly and, and people who had higher death anxiety also had higher work related stress. One of the questions we asked besides the validated survey was telling a patient that they were going to die is difficult for me and we asked him to answer in Lickert scale.

Work related stress, stress was highest for those gynecologic oncologists that agreed or someone agreed with the statement, with that statement and again this did not correlate with religion or self categorization, those who agreed had the highest death anxiety, those who disagreed and strongly disagreed have the lowest work related stress scores. So there's an aspect of this as important for the patient and assessing what's going on with the patient, but there is and also an important aspect that needs to be addressed for clinicians and any caregiver that recognizing, one, that this allows for transformation as a human being for both the patient and the healthcare provider. To be open to that a professional must have an awareness of their own spiritual beliefs and coping skills, but this is going to require reflective work that many of us haven't done and may help us avoid burn out, may help us address whether or not we're giving futile treatments and options for reflective work. Examples would be Rachel Naomi Remen's workshops in California. Let me see how much time I have, let me, I want to read this briefly. This is a poem by a physician and I think it kind of reflects what I was saying.

Another end-stage cancer patient came for hospice placement yesterday. It seemed as though he'd lived forever in the same misshapen body, starving for a name to give each new-found bone. It seemed as though he'd run until his muscles were consumed, until his gnawing hunger had subsumed in it his very self.

I need to know his vital signs. I need to know his fate. I need to hold his heart, the stone beneath the endless, bone-strewn desert; while I squeeze for just one drop of blood, more dying waits downstairs for me. I almost hear their groans. Same hunger, bones. Same face we all consumed. As I examine them, I find the tomb toward which they lead. I know it is my own.

I think it's important that we all have to believe that we're okay otherwise we'll become, we'll be overcome with anxiety and if we dwell in this fear we'll lose the opportunity for exponential existential growth for the patent and ourselves. A recent study, a qualitative study on palliative care physicians showed that even though there was a broad view of spirituality and the concept remained illusive there seemed no doubt that the spiritual domain was fundamental to physicians for filling the mandate of alleviating suffering and promoting healing which in turn nourished their own personal spirituality. There are ethical considerations which I must just briefly mention, confidentiality, trustworthiness, compassionate presence, all are required in order to ask these questions. Professionals need for self-care, reflection, and attention to stress management have to be incorporated in order to really know what to do with these or at least a good support group or great nurses that you work with. Boundaries prohibition of proselytizing, no threatening questions, recognizing theologic limitations meaning don't over-estimate your abilities and don't withhold your spiritual assessment because you're underestimating your abilities. There is a level that you should be asking and at some point it should return to a specialist.

As Frankl said, suffering creates a search for meaning, a powerful motivation to understand the situation, blocking the search mainly to existential frustration, hopelessness, depression, apathy, and psychopathology for the patient and for us. Cancer has an opportunity for hopelessness or hope, burden to others, or independence, loss of dignity or increased self-worth, desire for death or meaning in life, guilt and anger versus forgiveness and hate versus love. As [inaudible] said the writing prescriptions is easily, to, to come to an understanding with people is hard. So spirituality and medicine is not about following the script and it's not about attending a church, synagogue or a mosque, it's about listening and talking and presence, it's relational and experiential, it's about facing a terminal illness together, it's about an end in itself, just asking the questions and finding a meaning in our patients' lives as well as our own and if you don't mind I'm just going to read a couple of comments about spiritual distress gone wrong. I want to say something about the darkness of being a patient. I've had at least two episodes of absolute despair when I was incapable of extracting myself from what John Bunyans who aptly described as a slew of despond. I'd entered a realm in which I was incapable of managing my feelings and it followed that I could not control my body and tears and hysteria had taken over.

The first followed a lovely day at home spent working on the book. The second was a good deal more public and it occurred during a cystogram where my hysteria, tears, begging and squirming rendered me an uncooperative patient. Those two experiences, the first occurring by myself and the second in the hospital hardened my rosy picture of the doctor and/or technician and patient relationship. It was really not so complimentary and it requires a good deal of self-discipline on the part of the patient. It requires a personal discipline to manage ones illness. The physician can't do, do it for you, you have to do it. Through these experiences I realize that the human activity of attentive self-discipline is critical and living through fatal illness. We can all go through the slew of despond but it is easier to get there than to return. The first episode can be best described as an unraveling. I had an appointment with Dr. Sun at 4 p.m. As I began to unravel at 3 p.m. the tears and hysteria suggested that I could not dress myself or wash and the prospect of driving was terrifying. I phoned Dr. Sun and then called Giles, my husband at the University. I'm 56 and I've seen a lot of the world but I have never been so completely unstrong. Giles has also never seen me that way and if I said to you that there were certain thoughts that I was thinking that would be meaningless. I asked myself was it fear of death, maybe, fear of living in, perhaps, however the real fear was fear of despair. I felt so terrified and I'm not sure why, I felt my self going down the hole, I was working on the book, a second that reviewed a part where I was diagnosed with the second cancer and now I was reading it with a much more fatalistic view and I clearly had a sense of my ending. It was a complicated internal exchange with some of it simply missing like itself. Yes that was true, I love life, I love the life I created with Giles, I really do, it's been a great time and you know what I think constitutes a real life, it's conversation, travel, good food, an intellectual life and teaching and the knowledge that there is always so much more to come.

And there was something else, after a long conversation with a dear friend from the east, I became overwhelmed with envy and outrage, outrage for the unfairness of illness. How to get out of it? Ah, Ativan. God bless that stuff. And Dr. Giles and Dr. Sun. We had a two hour conversation with Dr. Sun. Well I said I don't mind being sick, but I don't like being misplaced, the slew of despond, so absolutely without hope. Dr. Sun said this experience will become more frequent and that I would have to learn to manage myself and that there was no way out, it was the nature of illness. There was no running away from it. She also said not to live in the future, not to think about what was coming, but to live each day and I try to do this, I'm still trying. I stay in the present, painting, talking and sleeping. The future will take care of itself I thought and the past is only something insufficiently remembered. My second slew of despond occurred during a cystogram and I think many of the tests that are done on people who are terminally ill serve no purpose for the ill. They serve the physician's larger sense of curiosity, just what's going on here, what's the purpose. They just want to know the process. The tests are of no greater good for the patient and often require that the patient sacrifice comfort. If they wanted to help they would give the patient a pill, if they wanted to help. Part of the team that day was a lovely nurse who came in during a cystogram and I talked to her after she put the long tubing into my bladder and I said, I'm going to dye for what looks like kidney failure and this test will simply suggest the accuracy of this possibility.

What good will this do any of us? She looked at me with dear kindness and then the guys came and holy shit they just didn't give a damn, they were just going to shoot the dye in the kidney and get this to happen and I said, "It's not happening, it's clogged up". They held me down and they tried again and I felt claustrophobic. I kept wriggling, trying to get out of the way, but they wouldn't talk to me. I was too shaken to yell and I had a sense of violation, but this is a term that may be too easy for a woman to use. We all left the room with the sense that we've not performed well and no one felt that good about it. So I'm going to close with that and there are many aspects of that last passage where I think simply listening and sitting with the patient would have made a huge difference, but I, I want to stop and give you a few minutes to ask some questions and, and say thank you for letting me talk.

Audience: It's somewhat of a paradox because we know that the burn out rate among colleges is so high because constantly if you look at the last ASCO study on physician burn out in oncology that the big complaint of course is, is that really you know our cure rate is relatively modest and that dealing with patients dying and inability to cure patients is really a tremendous source of frustration perhaps in academia that's a little bit different because there are other sources of satisfaction of research. But the paradox is, is that if we really believe that reflection and renewal and coming to grips with death and dying and our own dying allows us, will allow us to take care of patients in a better way that there's a lot of resistance on the part of oncology to really go to places and think about courses on mindfulness and meditation and you know doctors don't take care of themselves very well in terms of their physical and spiritual life and I wondered what you're thinking about, what we need to do to help people with that?

Dr. Ramondetta: I think the resistance is time for most. I don think that people I think many doctors want to do that kind of work, I really do. I don't think we have time. I do think that there is effort at the medical school age level where Rachel Naomi Remen has an actual course called the healer's art where she actually encourages physicians, students to reflect and I participated in this a little bit and I think I've recognized while I was being a leader that I probably needed to be in the audience, but I think that those things are there, but I also think that yes guidance is important. I think that you can find some of that locally. I also think that shifting the mindset of at least talking about this more so that one of the end results is peace of mind for the patient and one of your goals is that that you can find some renewal simply in trying to get to that point.

Dr. Baile: Thank you very much. Other questions? Well Dr. Ramondetta has to get to the OR, so I, I promised that we'd finish on time. So thank you very much for coming.