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Schwartz Center Rounds |
The Kenneth B. Schwartz Center at Massachusetts General Hospital, 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., 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 April 7, 2006; accepted for publication April 7, 2006.
Access and take the CME test online and receive 1 AMA PRA category 1 credit at CME.TheOncologist.com
LEARNING OBJECTIVES
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Learning Objectives
Abstract
Presentation
Dialogue
Discussion
Conclusion
Disclosure of Potential...
References
After completing this course, the reader will be able to:
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ABSTRACT |
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The evolving field of oncology increasingly requires a team of medical specialists working in unison to deliver optimal medical care. While this coordination may maximize the technical synergy of care, it can challenge interprofessional and interdisciplinary connections. Poor and miscommunication and conflicts between staff and between the family and providers adversely affect patient care and quality of life. Furthermore, lack of communication leaves a vacuum that sucks in fear. A recent Newsweek article highlighted the challenges of practicing in the age of high-tech medicine. The author had to beg for a prognosis for her critically ill and dying husband, with unhelpful subspecialists failing to communicate the bigger picture. This article explores the tough issue of how teams handle uncertainty and bad news and how patients and families can be better supported in the multifaceted paradigm of modern care.
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PRESENTATION |
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I was once a stalker. My victims—yes, there were several—were high on the social scale, but they were not celebrities. They were doctors.
My husband, Doug, died recently after a sudden illness put him in an intensive-care unit for 38 days. Being new to the world of hospitals, I stumbled around blindly for days before I figured out what all family members starved for up-to-date details about the health of their loved ones learn quickly: information comes from the doctor, and in order to get that information you must be present when the doctor visits the patient each day, whenever that may be.
I understand that what with juggling office hours and visits to hospitalized patients, doctors have demanding schedules. But do they understand that when your loved one is in the hospital, the rest of your life doesn’t just go away? Hospitals operate on the premise that we, the family, must make ourselves readily accessible to the doctor—not by phone but in person—or else the doctor is not accountable.
Any time you are not in the patient’s room (and, indeed, the hospital prefers that you not linger there), it is assumed that you are in the waiting room. When the doctor arrives, the nurse calls to let you know. If you’ve stepped out to grab something to eat, make phone calls with some degree of privacy or dash home to feed kids or pets, there’s a good chance you’ll miss the doctor unless you’ve networked with others who are waiting and they are able to summon you quickly.
If you miss the doctor, don’t expect him to call you later with a report on how your loved one is doing. And forget about calling him at his office. Some receptionists won’t even pretend to deliver a request to the doctor for a phone call from anyone other than a patient’s ICU nurse.
To make matters worse, there isn’t just one doctor. My husband had eight—not uncommon with critically ill patients. Some of Doug’s physicians made their rounds before visiting hours. Those I could do nothing about. Most tended to come around midmorning, but a few mavericks appeared in the afternoon or evening, varying their schedules daily. I sometimes bagged my quarry as late as 8:30 p.m.
By Doug’s second day of hospitalization, I was panicky and grasping at straws. The virus that had given him breathing problems had attacked several areas of his body. I could not communicate with him: a respirator was breathing for him and he was sedated. But the cardiologist told me that Doug was doing reasonably well, and I naively took solace in this mild pronouncement. That is, until a lung specialist zipped into the room, put his stethoscope to Doug’s chest and said, "He’s not getting better. He’s worse. He may die. Any questions?" I was too stunned to be coherent.
Later, a nephrologist informed me that Doug’s kidneys were failing and he needed dialysis. I told this doctor what the prior two specialists had said, hoping he could reconcile their conflicting reports. Instead, he plied me with questions about their findings that I could not answer.
After he left, I fled the room, gasping for breath, to tearfully summon Doug’s parents from Florida and call his brother in New Jersey. When I returned to the ICU, his nurse told me somewhat indignantly that she’d been trying to find me, as there were more doctors to see. Oh, boy!
Finally, a specialist in infectious diseases appeared. He seemed sympathetic to my bewilderment, so I begged for an explanation: was Doug holding his own or dying? This doctor, bless him, took the time to explain that each of the doctors I’d seen had given an assessment only of the particular organ system he specialized in, not of Doug’s overall condition. So although his heart was doing reasonably well, his lungs and kidneys were failing and he was definitely in danger of dying.
I hold no grudge against the hospital that treated my husband, and I encountered a number of compassionate nurses and doctors during Doug’s hospital stay. As far as I know, they did everything in their power to help him, and I am grateful for that. But it seems that it’s no one’s job to ensure that the family has a clear picture of what is happening. If specialists are uncomfortable discussing anything outside their area of expertise—perhaps because of a fear of lawsuits or because they haven’t had time to familiarize themselves with the facts—then the hospital needs to designate someone to fill in the information gaps. I had to do this myself by gleaning tips from sympathetic doctors and nurses, and learning how to decipher medical jargon.
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DIALOGUE |
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Oncologist:
About 2 months ago one of my patients told me, "My dog was recently admitted to a veterinary hospital, and I can’t tell you how different the experience was from my clinical care. The veterinarian called me every single day and told me how my dog was doing and what the plan was for that day. When I was admitted to MGH, the doctors only spoke to my family when they did their rounds. It was very difficult to get information."
Nurse:
This is a very unfortunate case but not unusual. I have worked both in rural and urban hospitals, and no matter where I’ve gone, patients and their providers still struggle with these issues. The first issue has to do with time: time for the providers to get together to discuss patient’s care, and time for the family with the provider. The other issue is communication. Often after a provider sits down and talks to the family, the family comes out stunned and overwhelmed with the information. By the time they start to process it and come up with questions, we are out the door to the next patient.
Nurse:
The family will often then approach me and ask what they should do. When I remind them that they spoke to the doctor about that, they will say, "Oh, yeah, I forgot." They just can’t take it all in.
Doctors Communicating with Families
Oncologist:
When there are several providers involved in the clinical care, it always makes it harder. There seemed to be nobody in charge of helping the family in the Newsweek article get the information they needed. At MGH there is a MICU (Medical), SICU (Surgical), NeuroICU (Neurological) attending that is in charge of consolidating the care and the information. The real challenge is to achieve that when we are all very busy. I am not sure anyone has come up with a really good solution, and it tends to require a personal commitment.
Nurse:
The author mentioned that there should be one person who can talk with the family. I previously worked at a community hospital in the Chicago area and worked on a floor taking care of tons of patients dying of their disease. When we didn’t know what else to do, we’d turn to our chaplain, who was always very good at trying to coordinate efforts between the staff and the family.
Oncologist:
I find it difficult to ask the patient, "What exactly did the cardiologist tell you?" or "What did the pulmonologist say?" rather than reading the chart. That just doesn’t engender a lot of confidence in the medical system.
Oncologist:
I think many of us in adult oncology have always felt very strongly about our responsibility to the patient. What I am hearing from everyone today and in reading this article is that we probably have that same responsibility to the family members. I have always believed that a good family meeting saves you oodles of time. A good family meeting makes the entire hospitalization so much easier. A good 20-minute family meeting, when you are doing nothing but focusing on that family, will make the rest of the admission a lot smoother.
Patients Communicating with Doctors
Oncologist:
Let me ask you, when you counsel patients about how to be effective in communicating with the doctor, what do you say?
Nurse:
I usually tell them that they should have a list of questions ready, and when they think of things, to write them down. They should let the doctors know when they first walk in the room about their list of questions so that the doctor can budget their time. I also reassure them that I’m also available to provide explanations. Patients appreciate some of the subtleties of hospital life, like the difference between radiation oncology, medical oncology, and surgical oncology, but sometimes explaining this to the patient and the different perspectives is important; why the surgical oncologists are looking at the CT or the PET scan can help them to understand the different priorities. It helps them to realize that everybody contributes in clinical care.
Nurse:
I think patients and families often don’t understand how the medical system works. We really can seem like we are nuts when so many different people need to come in and ask the patient the same questions over and over again.
Facilitator:
What about the role of social work in the hospital setting? Are social workers able to help facilitate meetings between the physicians and the families?
Social Worker:
I think that in some of the smaller hospitals, the social worker is still doing a lot of the coordination between the family and the staff. We have really gotten away from that. The staff are more available to family and do really communicate effectively and repeatedly, and it comes from several directions and to both patient and several family members so that they have more people listening and hearing the message.
Nurse:
One of the barriers is the "level" of communication. For a lot of people, if you say "esophagitis," they are going to nod but they will have no idea what it means. People nod because they don’t want to seem stupid, but they will have absolutely no clue what it meant.
Oncologist:
Symptoms are only words until you have them. For example you can tell a patient they are going to get esophagitis and that esophagitis is a common complication of radiation and chemotherapy, and they’ll look at you and they’ll nod. Even when you explain it in commonplace 5th grade language, it rarely really describes the real experience.
Providing a Prognosis
Fellow:
As a physician who has recently started doing a lot of inpatient care, I think there seem to be two broad issues. One has to do with the logistics of communication and how it can be carried out. It speaks to the complexity of inpatient care and it definitely resonates. As a house officer, I remember being that intern sitting in front of the board, and the way the whole system is set up, with a board or a big sheet of paper, and the patients just transform into a series of numbers. You would have someone running the dialysis machine and you have the cardiologist there. I felt like the best thing that could happen was if the patient had a cancer diagnosis because I often think the oncologist can be a go-to person. It would be nice if we could go back to the day when there was one doctor. I think that there has been a diffusion of responsibility. There was no one ‘go-to’ person. In some ways, the house doctor could make it easier for the team to do that because they are there for 12 or 24 hours at a time.
Secondly, I also think the real challenge of delivering bad news and a poor prognosis was driving some of the difficulties with communication. When you start to sense that someone is close to death or a bad outcome is near, it’s hard to accept it, even when you see it. It is worse for the family not to know or not to get any information. Anticipating their uncertainty can be the most difficult thing of all. Although families are very forgiving about what we tell them, it can come back to bite us more if we never saying anything at all.
Palliative Care Physician:
It is good to identify a spokesperson for the family. On the other side of the coin, I wouldn’t want to let the admitting doctor or the team leader off the hook. I think it is incumbent on the doctor who is in charge every now and then, deliberately, to set time aside and go over the prognosis and the plan with the patient and the family. If it is an outpatient area, then maybe this could occur once a month. If it is an inpatient area, I think every 2 days, or maybe once a week would be adequate.
We do avoid discussing prognosis because that is what triggers all the other questions. You know, "Doctor, I thought he would be all right, but now you’re telling me that he won’t be all right." Now they want to know what the options are and, "Why didn’t we do this," and, "Why don’t we do that." Once you deliver the prognosis, it triggers a long sequence of questions.
Physician:
Some interesting data that are now in press show that patients who are aware of their prognoses are much more anxious, more terrified, and measurably more depressed than patients who don’t know. Denial does seem to serve a purpose.
Oncologist:
I think a good doctor has to feel out how much information the patient generally wants to know. Some patients and families don’t really want to know that much, and that’s the way they want to be. Other families and patients actually do want to know the details, and they should be told, if they are asking.
Oncologist:
One gentleman I saw this week knew he was dying and desperately wanted to know what was going to happen, what was he going to be feeling, what would come of his disease. He had not asked anyone about this because he just couldn’t, and now he was so afraid that he didn’t know if he could ask. I had to encourage the patient to ask these types of questions.
Social Worker:
The reality is that patients live longer and have happier lives because we do have so many specialists. No one person could possibly treat people in situations like this. I grew up with family doctors. The family doctor to my grandmother was probably the most important person to her well-being outside of my parents. I think people are looking for that kind of intimacy, but the system does not make that possible for all caregivers today. I think we have to think about how to designate a point person, or work together as a team so that people get well-coordinated care but also get that sense of being known. As a social worker working in the NICU, my job was often to say to patients what the doctor or the nurse really wanted to say, and to say to the doctor or the nurse what the patients really wanted to say. In a sense we were interpreting that caregiver to the family in order to facilitate a sense of cooperation and trust.
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DISCUSSION |
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Specialists, Teams, and Medicalization of Care
In the fifth century B.C., the Greek physician Hippocrates, the "Father of Medicine," challenged supernatural explanations for diseases, as a champion of a rational approach to treatment in the new age of reason while advocating a holistic approach to patient treatment [4]. For centuries, physicians treated their patients’ ailments as singular practitioners and operated in the intimate setting of the home or within religious communities. The first push toward the centralization of this approach through the emergence of medical specialization began to occur in the 19th century, foremost in the medical communities of Paris, with the renaissance’s enlightenment and scientific expansion of medical knowledge through systematic observation and research [5]. The transitions from vocation to profession to business mirror societal change in the past 200 years. The U.S. had only two hospitals, in Philadelphia and New York, at the beginning of the 19th century. In the first hospital survey in 1873, there were 178 hospitals, with the number rising to 4,359 in 1909 with "all the [modern] criticisms" of medicine being cited by the 1920s [6]. Shaped by new ideas about the etiology of disease and the hope of "secular healing," families came to depend on the care of strangers [6]. Despite the myths of a utopian past or a utopian future, it is clear that, in the past century, the pace and the provision of care have accelerated, perhaps best illustrated in the past 50 years by the staggering transitions in care of myocardial infarction since it took President Dwight D. Eisenhower one doctor and 24 hours to get to hospital to the introduction of coronary care units (1960), defibrillation (1962), thrombolysis (1985), glycoprotein IIb/IIIa inhibitors (1995), primary angioplasty (1995), and active medical management [7].
Team Dynamics
Building a team is a valuable investment. There are very tangible benefits in seeking input from diverse perspectives. A memorable historical example being President Abraham Lincoln’s choice of three men for his administration who were political opponents during the previous election. By seeking their input, he ultimately gained their admiration and respect, and they became his allies [8]. Team communication has moved from dogma to dynamic in the high stakes world of business and management. Beyond sports rhetoric, the "keys to success," and beyond the pursuit of excellence, there is synergy in what is available in a team. With everyone playing a role, with clearly defined goals in a culture that values communication, strengthens the weakest link, invests, makes things happen, and works at it hard, anything becomes achievable [9]. Great teams need great leaders, epitomized in the military paradigm. The West Point Academy motto "Duty. Honor. Country" may be far from compassionate care, but embracing a sense of personal responsibility, living by a code of integrity, and acknowledging a sense of being part of something bigger than yourself can ennoble even the most menial task [10].
While the political, business, and military models are perhaps more obviously goal-oriented, medicine is a complex, multifaceted industry. Achieving better outcomes and improving quality, targets success on multiple levels, beyond "care that is free from unavoidable distress and suffering for patients, families, and caregivers in general accord with patients and families’ wishes," as defined by the Institute of Medicine [11]. Teams are not born but made, and all cycle through forming (creation), storming (conflict), norming (functional), and reforming or dissolving (dysfuctional) [12].
Overcoming Barriers to Communication
Potential barriers to communication need to be defined and explored. Families need the medical team to balance honesty and realism with sensitivity and support [13]. Multiple studies have shown that patients generally want to know their cancer diagnoses and prognoses. Despite this, more than 40% of oncologists withhold prognoses if they are not specifically asked or if family members request that the patient not be told [14]. In the U.S., the law has clearly defined a clinician’s obligation to provide as much information about a disease course and treatment as the patient desires [15]. Helping prioritize information in manageable amounts will make it constructive and aid the patient’s and family’s involvement in shared decision making.
Communication
A number of studies in acute care settings have shown that patient and family well-being are directly linked to the quality of communication among a medical team [2]. In the field of HIV/AIDS, fragmented care has been shown to lead to lack of adherence, poor outcomes, and a lack of access to services that arise from navigating a complicated medical system [16]. It has been acknowledged in the past that interdisciplinary strategies are still needed to improve disease management and that successful interventions aimed at improving communication between physicians and family members now typically involve a multidisciplinary team consisting at a minimum of physicians, nurses, and social workers [2].
Several intervention studies have shown that improving communication in an ICU setting can protect dignity and improve quality of life by making an earlier transition to palliative care [17]. Daily multidisciplinary rounds in ICUs can be used to establish goals, steps and consensus on the course of care for each patient [2]. One in five Americans will die in an ICU, but very few will be able to communicate their wishes for end-of-life treatment, leaving the decision making in the hands of the physicians and family. A "patient-centered" approach to communication involves empathizing and actively seeking patient and family participation in decision making by all the involved parties, directly or by proxy [18].
In a recent study, bereaved family members retrospectively identified areas for improvement in the process of transitioning from chemotherapy to palliative care [17]. Many of the difficulties experienced during this difficult period of transition involved challenges in communication. Despite the limited available options, families did not want physicians to state that there were no more options, but rather present palliative care as an option that offers its own rewards and benefits. The other commonly cited criticism related to physicians being unwilling to explore the emotional impact of the illness, providing sufficient information available in an atmosphere relaxed enough to allow families to ask questions, including asking about prognosis, respecting uncertainty, and helping families understand more about medical management and complex treatments.
Fundamentally, it takes a concerted and committed effort to seek to be and to remain connected with families and keep them informed.
How to Improve Communication in Multidisciplinary Teams
Various interventions aimed at increasing team communication in medical settings have allowed staff members to communicate issues or structure routine work practices to anticipate minor difficulties before they became full blown problems. For example, multidisciplinary work evaluations in a PICU at the end of each shift worked to enhance team communication and protect against emotional exhaustion [19]. Other interventions are more broadly based and can prevent conflicts arising from differences in status, education, roles, and goals [20]. Look for common concerns among the group in order to develop a foundational sense of solidarity, explore concerns, and allow each member to be heard and acknowledged. For some clinicians, identifying both their thoughts and feelings is important but a high-risk strategy in some medical fields. Successful conflict resolution rests on the acknowledgment that this is a gradual process in which an issue may need to be revisited several times before achieving full resolution [20].
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CONCLUSION |
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DISCLOSURE OF POTENTIAL CONFLICTS OF INTEREST |
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REFERENCES |
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This article has been cited by other articles:
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  B. J. Cashavelly, K. Donelan, K. D. Binda, J. R. Mailhot, K. A. Clair-Hayes, and P. Maramaldi The Forgotten Team Member: Meeting the Needs of Oncology Support Staff Oncologist, May 1, 2008; 13(5): 530 - 538. [Abstract] [Full Text] [PDF]
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