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Medical Ethics: Schwartz Center Rounds |
Department of Medicine, Division of Hematology-Oncology, Massachusetts General Hospital, Boston, Massachusetts, USA
Key Words. Oncology • Support • Psychosocial • Cancer
Correspondence: Richard T. Penson, M.R.C.P., M.D., Department of Medicine, Division of Hematology-Oncology, Massachusetts General Hospital, Yawkey 9066, 55 Fruit Street, Boston, Massachusetts 02114-2617, USA. Telephone: 617-726-5867; Fax: 617-724-6898; e-mail: rpenson{at}partners.org
Received July 12, 2007; accepted for publication July 12, 2007.
Disclosure: No potential conflicts of interest were reported by the authors, planners, reviewers, or staff managers of this article.
Access and take the CME test online and receive 1 AMA PRA Category 1 CreditTM at CME.TheOncologist.com
Learning Objectives
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A patient with recurrent ovarian cancer, now in a 12-year remission after recurrence, and her surgeon, discussed their experiences and feelings around the hopes and fears of cancer and its treatment. Hope sustains many through dark times, and is at the core of the wonderful resilience of many who wrestle with cancer. Concerns about false hope, unrealistic expectations, assumptions, engaging in realistic hopefulness, and the joys and stresses embodied in hope and how they frame the caregiver–patient relationship are discussed. The literature and limited evidence base are reviewed.
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Nat: In 1991, I went to my regular gynecologist to hear that I had something, but probably nothing serious. She wanted me to see the Chief of Gynecologic Oncology. I said, "Yeah, you don't think there is anything serious!" He was wonderful, and respected us as individuals, and a couple. We knew we were dealing with a human being, and that he was dealing with two people, not just with me. That was a wonderful beginning for my husband and me. Coincidentally, but importantly, I was a secondary school counselor. As part of professional development, I had gone through a weekend workshop with Bernie Segal. I felt as if I had gone through a defensive driving course for health care. I had already thought ahead. If I were ever given that news, how I would try to handle it, what would I try to do? We even talked about it. I felt it was a huge gift.
"It never occurred to me not to have hope."
Nat: It never occurred to me not to have hope. When I was told that I had this serious cancer, there was no sense that this was pretty hopeless. One of the things that also helped was that he made sure there was another patient, who had been through everything 5 years before, that I could call. I was a weaver at the time and she was also a weaver. He also connected me with his nurse practitioner. He spread out the support within his office, and with his other patient. I think that was a really smart thing to do. I wrote him a letter. I said, "I trust you completely," which I did. I had come here for the best medical care that exists. "Whatever you tell me to do medically, I will do. I will get busy on the rest of it." So, I did get busy on the rest of it, and got all kinds of tapes, and books. I got busy on my attitude.
Nat: I did have a recurrence 3 years later that was picked up early on a blood test and put me on another chemotherapy for a year in 1994. Since then, I have been fabulous. I am just fine. I have a wonderful, wonderful life. It hasn't been a death sentence. It may not be probable, but it's possible. It can be you. People buy lottery tickets with a one in three million chance. People do have a chance. I think it's right that they have hope.
Nat: I liked what Susan said in that article, if any of you have read it, when she talked about hope. At first you just can't believe it, surely they've got the wrong chart, surely this isn't mine. It can't be true. Then I hoped that the cancer was not very advanced. Hope keeps moving along. Susan points out that when it becomes clear that you are not going to live through it, there is still hope that you will die a good death, or some other tangible hope.
Surgeon: How an individual interacts with patients is more important than just being a style. I think it's extremely important for the caregiver and the patient to be a team, without a hierarchy. So, I find it very difficult to stand at a patient's bedside. I was told as a medical student that you should never sit on a patient's bed. That's probably correct, but you shouldn't stand above them and literally talk down to them. I think that the correct answer is that you should never sit on a patient's bed without asking permission. That's their turf. The choice to sit down and talk eye to eye is a very, very important and meaningful part of a relationship with a patient. It makes that patient an active participant in their care, and that has been an extremely important part of what I do. That patient who supported Nat is still alive, and now 20 years out from her treatment. That patient, like Nat, is very much an activist, an active participant in her care. That has to be part of what we are talking about, I will get to that later, as a result of the experience of patients who are very, very positive and recognizing that not everyone is like that. I worked with one of my very earliest patients who had literally been turned down for surgical management at another Boston hospital. She had been told, "you've got to start getting your will in order" and so forth. She had a huge tumor, but curiously only in lymph nodes. That patient not only survived, but helped me develop a patient support group for others with ovarian cancer, and that developed into the Wellness Community of Boston.
Surgeon: We started on a $70,000 shoestring and now the Wellness Community is an organization which has been incredibly successful in providing the hope, and support, with professional facilitators, workshops, and advocates who teach patients not just about their disease, but to ask questions of their caregivers to make certain they have an active role. But, patients can be active and disease can still recur. Patients don't "recur," disease "recurs." Patients don't "fail." I complain about this all the time. Patients don't "fail," the treatment "fails," and disease recurs. Yet you hear these terms all the time. Patients don't "fail," doctors fail. But, we don't fail all the time.
Surgeon: The concept of hope is elusive as we live in a data-driven world. We know the data unfortunately all too well in ovarian cancer, but we also know that there are exceptions to the rule. There are patients who develop recurrence of their disease at an isolated site who go on to become long-term survivors. It's the individuals like Nat who provide not only the hope for the patients, but the hope for the caregivers. I think that is very important [tears]. I get emotional about it because we deal with a lot of failure. It is very helpful to have people who then give you the support that you need. I can get over this [sniff]. It's not often that I have a chance to talk about the failure, but I think that it is important to be honest with patients about what goes on. There is a hope. When you approach each patient, you say that there is nothing that says you can't be one of those people who will do incredibly well.
"When you approach each patient, you say that there is nothing that says you can't be one of those people who will do incredibly well."
Surgeon: As a surgeon who is taking care of patients with bad diseases, you can be as nasty as you want to somebody who is going to be cured, and they're just going to blow it off and say, "that was a really bad experience and, you know, my life has improved now and I've moved on." On the other hand, for those patients whom you fail, you make the difference for the rest of their lives, and then you become responsible for their day-to-day quality of life. It is a tremendous burden. Yet at the same time, that is where the gratification comes from: making a positive difference in terms of their quality of life, and helping to guide them.
Surgeon: One of the things that gives me hope is this place, and my colleagues. One was my own mentor, who died a couple years ago, who taught me my skills more than 25 years ago. He introduced the concept of cytoreduction, at a time when no one thought it was reasonable to remove tumor if you couldn't remove the entire tumor. To remove the maximal amount of tumor allowed chemotherapy to work more effectively. The better you did, the better the patient did. Part of the goal in this wonderful academic institution is the ability to train a generation of people to do that. Every day in the operating room it is a joy to be able to pass on what was passed on to me.
Medical Oncologist: Our guest really is a consummate surgeon. He is one of the very many "go to" surgeons in this hospital. A major way I stay hopeful is to be thankful. I am incredibly thankful that I am a physician. On the bad days, I remind myself of the need to be thankful.
Medical Oncologist: I have burnt out twice in my career so far. The first time I was on call for four weekends in a row. There was a sickness one weekend, and of course you volunteer, and then I was on call the next weekend, and then someone was away unexpectedly, and there was a vacation. At the end of the fourth weekend, I was totally exhausted. I even had a really negative patient interaction because I was so exhausted. The other experience of hopelessness was that I wasn't exactly burnt out, but had this curious experience with a whole series of new patients that I met, just starting their experience with ovarian cancer. I was dogged by the thought, "I know the last chapter of your life. It's going to turn out badly 85% or 95% of the time, you are likely to die of this disease." For a while, it filled my mind. There was no sense of cheering them along, of accompanying them, as they entered this experience with ovarian cancer, where perhaps only 20% of patients with advanced disease are cured. I think I felt the burden of the specters of all of the people who have gone before, and it was really oppressive to me. I had no sense of hope, engaging with those people as they set out on their journey, or of being realistically hopeful. I had to shake myself and say, both the patient and myself were in need of hope at this point, which really led me to Rabbi Harris' article.
Rabbi: The hope that I want us to think about is the existential hope of the patient. Every caregiver has a particular end in mind intellectually, but a personal invested passion as well. Stepping back from my expertise as a clinician, what is my hope for myself. I'm not talking procedures, I am talking about what do I hope happens here.
Rabbi: Failure? When I heard you say that you don't like to stand at the patient's bedside, I said, "oh, it's another doctor who likes to run away," and was delighted that you invest in the relationship; you want to be head to head with the patient. I also heard, in what you said, joy. I am guessing that energy infuses your work and your relationships.
Rabbi: When we burn out, I think that is often because we haven't reflected carefully on what our goals are. It always comes back to bite us. I think we are all subject to burn out just as hope can burn out over time. What our goals were at the beginning of our careers and what they are at any given week, month, or year later may change, and we have to be aware of that. Support for the caregiver is the way to make that happen. But, I'm reluctant to put that in the language of either the caregiver, or the patient. For all of us, reflecting on those moments, and reflecting on them with someone who has shared those experiences, and shares respect for your line of work, and for you, is of critical importance.
"When I hear reference to hope expressed in terms of medical outcome, I'm concerned. I would like to challenge the caregivers in this room to consider what hope means for the patient."
Rabbi: The very act of listening, generously listening while assuming nothing, holds hope in the relationship. A constructive relationship can't exist if listening doesn't happen. I think that sometimes we think of hope as setting the bar very high. I don't think that holding hope requires any action at all. In fact, it's very passive but it requires very active listeners. It's not another thing to put on the to-do list but it is a way of being.
Medical Oncologist: It's helpful to question, "what's our motive in addressing this issue?" My motive is often to fan back into flame my initial commitment to service in medicine. Reigniting passion. There is a high calling to care in the service of medicine. Sometimes we lose sight of that.
Surgeon: If I use the term "failure," I use it because it is a term I hear very frequently and I find it incredibly irritating. There are three terms I hate. One is "patient failure." One is the "patient progressed." To me, the patient progresses when he or she goes home and has a wonderful summer, not when the tumor starts growing into their lung. The last, of course, is the "patient recurred." The patient recurs when they come back to visit you and they are feeling fine. Not when the tumor grows. I find it interesting that, as I have had the good fortune of seeing patients come back year after year, it doesn't get easier for them to come back to the oncologist. As they get further and further out from diagnosis, perhaps patients realize how much they may have to lose. Their hope will collapse upon itself again as it once did.
Nat: That really is true. I had my CA-125 drawn yesterday. As soon as this meeting is over, I will call and find out what it was. I have been doing that every 3 months for fourteen and a half years, and I will do it for the rest of my life. I think you're absolutely right that the fear doesn't die. Every time wonderful things happen, you realize how much you have to lose.
Nat: I think patients take a very different point of view. I don't think I have ever heard anyone in the Cancer Resource Room say, or ever felt people disappointed, that the doctor failed. We know that it's the treatment that didn't work. I felt from the very, very beginning that if my tumor recurred, your disappointment would be huge. I never felt a sense of failure. I hate it that you devoted people, who do all of this caring in this hospital, feel any sense of failure when the treatment doesn't work or if we don't make it for one reason.
Social Worker: I never feel I've "failed" when the patients get sicker, because that isn't my goal to treat their illness, to save their life. My goal is to develop a relationship with them to help them through whatever it is they have to face. You've talked about the gratification, more than gratification, the deep reward of helping a patient wherever they are and joining them in that in a positive way, all of us have. But, that's not true for physicians. They do have that goal, and spend years learning how to carry that out. I am sympathetic. I'm not agreeing that they should use the term failure, but I'm sympathetic with why they do, because their hope, their whole reason for doing this, is that they hope they were going to alter the course of the illness.
Rabbi: I really think the word failure is not a helpful word. I think that we need to separate medical outcomes and personal relationships. I think that medical outcome can be, should be, and is entirely independent of relationships. When I hear reference to hope expressed in terms of medical outcome, I'm concerned. I would like to challenge the caregivers in this room to consider what hope means for the patient. Clearly, the medical outcome can embody hope, but there are also other issues that are important in terms of the patient's life. It could be getting to their child's graduation; it could be buds on the trees, and needing to see one more spring. Hope is constantly changing. If one assumes what the hope is for the patient, then there is a serious rupture in trust and communication.
"Hope is... at one and the same time both an anticipation of something positive and a positive acceptance of the inevitable."
Nurse: I agree. I think the physicians need to reframe their hope that they will make the patient better, to the desire to be the very best doctor they can be for that patient. I don't see the doctor failing, if you adjust your hope so that your hope is to be the best you can be. The treatment may work, or the treatment may not work. If you have been the best doctor you can be, you haven't failed.
Psychiatrist: I once had an extraordinary conversation with a young man who died of AML. We were moving toward the goal that the family would be comfortable enough with their anxiety and worry. They all understood what the statistics are, but that didn't mean that they weren't hopeful that he was going to survive. Then they said, "there is no such thing as false hope, there is just hope." This resolve liberated me. Interfering with that hope is risky. We have to do all the right stuff we want to do medically but also be hopeful in a way that resonates with patients and families.
Surgeon: I know it's also true that sometimes the caregiver will avoid a patient who is in the last stages of disease because they can't come in and say something bright, and cheerful, and hopeful. We see it among our trainees all the time. I don't need to go into see Mrs. Jones today, she's sleeping. Well, Mrs. Jones is sleeping because no one is in her room. All too often I think we should go in and sit down with the patient and talk to them about something. Something that the palliative care team does so well, just reassuring them that there is somebody there who is going to listen to their problems. Maybe it is a lousy day and you can just sympathize that it's a lousy day. Taking away that opportunity to talk, that opportunity to hope that maybe tomorrow will be a better day, by isolating the patient is unkind, but does so often occur in hospitals.
Nurse: Hope isn't an either/or thing. Nothing is totally unlikely to happen. No one plans their budget based on their projected income. If a patient is able to hope for something that isn't going to happen and that sustains hope, well, I'm okay with that.
Physician: Perhaps the source of hope isn't as important as what hope can do for people, and with the way it morphs through a patient's experience; it is an important part of resilience.
Physician: With the amazing plasticity of human imagination, hope is part of what makes us wonderful.
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"The dreams of yesterday are the hopes of today and reality of tomorrow."Robert Goddard
"You're never closer to hope than when you're facing despair."Bill Colby, Patient, DFCI
Hope
Hope is the expectation of a positive outcome despite the circumstances [2]. It is international and universal. It transcends resources, and reality. But it is more than a neurotic and primitive attempt to shape the future; rather it is a fluid, limbic, and necessary response to a threat. It is at one and the same time both an anticipation of something positive and a positive acceptance of the inevitable. Freud would cite a chaperone superego and the pursuit of love [3]; Frankl, a will to live and find meaning [4]; Nietzsche, the thirst for power [5]; Dawkins, a selfish gene [6]. Hope sees the unseen, and expects the impossible [7]. Hope never fails, even in the face of failure. Michael Hansen, SJ, captured this in The Land of Walking Trees: "So many people speak about hope. What they mean is expectation or desire or want or need. None of these is hope. Hope is the only gift that must of necessity be found in the experience of its absence" [8]. "Face the worst while hoping for the best," because wonder and tragedy are always interwoven [9]. To hope in the face of despair is a courage, which acts in spite of fear.
Hopelessness Hurts
Patients are desperate to keep hope alive. Helplessness, isolation, and fear strangle hope. Harold Bloom eloquently praises Job's "yielding to fate, and trust[ing] in providence" paraphrasing Ralph Waldo Emerson as a very "personal and heroic defense against the demons of despair" [10].
Much as there is an inherent imperative to reframe disability and illness in a positive light, there is a "disability paradox" that describes the apparently inverse way in which more seriously disabled patients report better quality of life [11]. Hopefulness is more than an emotional domain and overlaps with resilience, learned adaptation, the strength of social networks, and spirituality. The mind–body connection is an important determinant of individual adjustment to adverse situations, change, and illness, and the sort of resilience that continually generates positive change [12]. Jerome Groopman tells his own story of disabling back pain in his wonderful book The Anatomy of Hope [13]. Groopman speaks first hand to the issue of how devastating it is when hope is lost, and how important caregivers are to restoring hope.
"... most trials have demonstrated overwhelming evidence that psychosocial interventions improve health-related quality of life outcomes for cancer patients ..."
Hope Against Hope
How do cancer patients define hope, especially when cure of their disease is out of reach? Hagerty et al. [14] asked 126 patients with metastatic cancer to define hope, and offered four exemplar answers. The most commonly endorsed definition (19%) was "that you can still enjoy a good quality of life even if life expectancy is uncertain." The most common theme (23%) was "to get on with life, make sure you make the most of it for as long as you can; set a distant goal and work like hell to get there."
That study also reported on what interactions between caregivers and patients were felt to be the most hope giving. Ninety-eight percent of patients wanted their doctors to be realistic and yet individualize their approach working with them. Patients were more hopeful with a doctor who offered the most up-to-date treatment (90%), appeared to know the patient's cancer really well (87%), told them that the pain would be well controlled (87%), and told them of all the treatment options (83%). Humor also helped (80%). Hagerty [14] listed six styles in conveying hope: (a) realism; (b) emotionally supportive, open, and responsive; (c) facilitating coping with dying; (d) providing information; (e) emphasizing therapeutic options (chemotherapy, complementary and alternative medicine [CAM], second opinion); (f) sharing personal information [14].
Whereas that study seems to suggest that patients can be realistic with their expectations and encourage straightforward communications from physicians, there are other studies and editorials suggesting quite the opposite. Patients commonly overestimate their life expectancy, and family caregivers frequently have a very hard time emotionally and cognitively hearing bad news delivered by physicians [15].
Hope and Patient Outcomes
In 1989, a study by the Spiegel group at Stanford showed surprising survival benefit among women with metastatic breast cancer receiving weekly supportive–expressive group therapy compared with standard medical therapy [16]. Since then, more than 20 psychosocial intervention studies have been conducted, mostly in breast cancer patients with advanced as well as early-stage cancers [17, 18]. The replication study of Spiegel's own group did not report survival outcomes [19]. At least 10 studies have looked at the effect of group therapy on cancer survival, with conflicting data but a consensus that mind matters, even if it does not impact survival, improving how, but not how long, you live [20].
Within group therapy, the community has corporate power, but the training and experience of the facilitator is vital. Kissane et al. [17] reported results with cognitive–existential group therapy and noted that the therapist was "especially critical to efficacious outcomes."
In contrast, most trials have demonstrated overwhelming evidence that psychosocial interventions improve health-related quality of life outcomes for cancer patients, and an entire new research field of psycho-oncology has been developed. Many major organizations, such as the National Cancer Policy Board of the Institute of Medicine and Central European Cooperative Group, have acknowledged the need for better professional training in this area, and recommend incorporation of psychosocial care into multidisciplinary management [21].
Hope: A CAM?
It is common that later-line chemotherapy is chosen by patients and families for palliative purposes or solely to maintain hope [22]. Arguably, if hope is an important driver of quality of life, and decision making for advanced cancers is largely focused on maintaining the patient's quality of life, then it may be reasonable to judiciously use tolerable interventions even with minimal chances of benefit. This is inevitably a controversial area. Cooperation with palliative care is helpful, and additional research is necessary to better provide guidance on good clinical practice [23]. Palliative care should be complementary rather than an alternate [23].
"Hope is cited as a major reason to pursue further treatment despite diminishing returns."
Ethics: Honesty and Hope
Sharing prognostic information is as much an art as a science. Physicians often either avoid, or are typically unrealistically generous in, prognostication [24]. At the other extreme, a prevalent paradigm has been to communicate realistic and comprehensive information: the truth, the whole truth, and nothing but the truth [25, 26]. In practice, it is extremely difficult for oncologists to be totally open about devastating diagnoses, low response rates to treatment, and dreadful toxicities, and still leave room to be hopeful. Much of the literature on communicating prognosis comes from studies undertaken with patients with early-stage disease [27]. As the inevitability of death approaches, the stakes rise, and so does an understandable and desperate aversion. Hope is cited as a major reason to pursue further treatment despite diminishing returns [23].
"While never able to carry a patient's burden, how do we witness their suffering, share in their journey, accompany them, and give them permission to own their joys and their fears, to hope, and to surrender?"
In a recent study involving 617 breast cancer patients, only 29% of women wanted to know their exact life expectancy [28]. Almost half of the patients (44%) thought that "nobody can know my probable life expectancy" and instead 81% wanted to know when and how their condition would likely deteriorate. We do have to be clear about the aims, process, and side effects of treatment, and allow enough information, time, and negotiation for patients to weigh different therapeutic options. Patients expect us to allow them their hope, within the self-regulated world of professional and ethical conduct.
An interesting reconstruction of "collusion" has been proposed by Helft [29] on the ethics and practice of prognostic communication with advanced cancer patients, exempting the clinician from many of the ethical imperatives, because of the "intimate collaboration" necessary in prognosticating for patients with advanced cancer. Helft suggested a "metered" way of communicating with patients, respecting their clinical situation, as not only ethical, but also beneficiary; dosing information like a drug [30]. Helft helpfully shifts the focus from statistics to individuals. However, just because open, honest, and accurate communication about emotive issues is "hard" is not a justification for collusion. Hope is important, [31] even "essential" [32]. However, we cannot waive respect for autonomy, nor abdicate our responsibility in the process of informed decision making. Being emotionally devastated may make patients incapable of weighing all of the issues, but it does not make them legally incompetent. They are involved.
Burning Out Hope
Dealing with patients' suffering is one of the major contributors to professional burnout for clinicians [33]. However, patients need open communication and highly value caregivers acknowledging their feelings [14, 28, 34]. How high is the cost of eloquent emotional intelligence?
There still remains a school of thought that both caregivers and patient advocates should avoid expressing emotions, and limit the clinical interaction to impartial advice and professional distance, attempting to insulate themselves against investing emotionally and personally in their patients' vulnerabilities. However, stoicism does not protect against the sympathy that suffering naturally provokes. The physician–patient connection is still viewed as the most important factor in decision making, and defining hope [14, 28]. A direct, realistic discussion with a confident, collaborative, and supportive cancer specialist is often seen as hopeful. Patients often see a realistic presentation as a positive factor in communication. An acknowledgement of and support for our patient's emotional needs further enhances effective communication.
Brian Bride recently published a provocative study reporting twice (15%) the normal lifetime incidence of post-traumatic stress disorder (7.8% for the general population) in social workers in the week prior to being surveyed [35]. Repeated exposure to secondary trauma is traumatic, indirectly victimizing spouses of war veterans and family members of holocaust survivors. Symptoms include intrusive thoughts, feeling detached or emotionally numb, and a high emotional cost.
False Hope?
Can hope ever be false, delusional, or dishonest? It has to be judged by the outcome. Does it reinforce resilience, or complicate a widening distance between the patient and those they love, compounding collusion [36]? The clinician's goal is to foster realistic hopefulness [22]. Risking trust with a lie is unacceptable, and compounds our own sense of disappointment and hopelessness in helping our patients.
Hope in Relationship
What diminishes hope? Feeling devalued, abandoned, distressed. Hope happens in relationships. Martin Smith, in the book Nativities and Passions, concludes, "Hope has nothing in common with optimism, a cheap, over the counter drug for maintaining denial. Hope is not only compatible with, but actually requires a courageous facing of death and vulnerability" [37].
Can we incorporate families' and patients' anger, grief, and despair into our relationship without abandoning them? Arthur Frank eloquently articulates this with his cry that he not necessarily is given all the answers, but that he "has his experience shared" by the clinician [38].
When All Hope Is Gone
A "good death" is uniquely defined, but often involves: (a) an acceptable timing (in Jewish tradition, after more than 80 years and taking longer than 3 days); (b) rational end-of-life care; (c) open and supportive communication; and (d) a sense of peace and resolution [39]. The Buddhist may most value respect for impermanence and connection, the Jew dignity and the struggle, the Muslim courage and the law, the Christian a relationship with the divine [40].
While never able to carry a patient's burden, how do we witness their suffering, share in their journey, accompany them, and give them permission to own their joys and their fears, to hope, and to surrender? How can we be wise, and use that as a healer [41]? Ralph Harper evokes exactly this attitude in a wonderful book, On Presence: Variations and Reflections [42]. He suggests that we have to make ourselves available, actively listen, and reflect on our practice. Harper reminds us that "presence" is not something we do, but is shared, what Buber calls the "between," an exchange at the level of human vulnerability [43].
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This article has been cited by other articles:
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  M. Renz, D. Koeberle, T. Cerny, and F. Strasser Between Utter Despair and Essential Hope J. Clin. Oncol., January 1, 2009; 27(1): 146 - 149. [Full Text] [PDF]
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