Communicating with Families during Advanced Illness
William M. Lamers, Jr.
Most Americans are familiar with the oil painting from more than a century ago that shows a physician seated in a thoughtful pose at the bedside of a young patient. This memorable scene represents what many envision as the ideal: a physician present in the home, at the patient's bedside, observing, caring for, and supporting a seriously ill patient.
Since the advent of the hospice a quarter century ago, more people are being cared for at home during the final stages of life. Yet physicians rarely make home visits. This places increased emphasis on excellent communication between physicians and those caring for patients in the home.
The rise of group medical practice and the wide application of managed care have changed the practice of medicine and further complicated patient-physician communication. Gatekeepers abound in medical offices to take messages, to enhance physician productivity, and to maintain reasonable separation between the tightly scheduled physician and callers seeking everything from prescription refills to questions about bothersome symptoms.
Today, cellular phones, pagers, answering machines, and the Internet offer multiple options for communication. Medical data and even live video can be transmitted via phone lines from a patient's home to the physician's office. Yet the basic difficulties in patient-physician communication have not diminished. This brief chapter examines some of the problems inherent in the specific area of patient-physician communication in the care and treatment of patients with advanced illness.
Communication, in simplest terms, is the transmission and reception of meaningful messages. Successful communication requires a clear message that is received and understood by the intended recipient. When we attempt to communicate through a third party or leave a message on an answering machine, we run the risk that the message may be mislaid, not forwarded, misunderstood, erased, or delayed. When we do not receive a reply in a reasonable period of time, we experience disappointment, frustration, and perhaps anger, depending on the urgency of the situation.
Communication between patient and physician is fairly easy when all goes well. In trying clinical situation, however, communication can deteriorate even when the physician provides clear, timely messages. There are a number of barriers that can impede the communication process.
Disordered communications occur when strong emotions such as fear impede even seemingly clear communications. Several years ago I observed an unusual example of disordered communication. A woman with advanced cancer complained to me that she was upset with her oncologist, who, she claimed did not answer her questions. I suggested transfer to the care of another oncologist and spoke with one noted for his skill at communicating with patients. I accompanied the woman to her first appointment with the new oncologist and sat in on the first half of their appointment. I observed that the new oncologist carefully listened to her history and thoughtfully answered one question after another in easily understandable language. I returned to my office where I was joined later by the patient. I expected her to thank me for arranging for the new oncologist. Instead, I was surprised when she began by saying, "Did you see that? He didn't answer my questions?" This otherwise credible woman was not able to process what the oncologist was saying, no doubt because of the implication of his answers to her direct questions. She had difficulty accepting what the new oncologist said and therefore was unable to process what he was saying. Fear got in the way. One way to counter this problem is to ask patients to repeat in their own words what the doctor has just said.
Many years ago a friend asked me to tell him what his chances were for survival from his recently diagnosed cancer of the pancreas. At the time we spoke, I did not know that his surgeon and oncologist had not told him his grim prognosis. Without inquiring further about what he knew and did not know, I thoughtlessly broke the news to my friend. He was shocked and abruptly withdrew from me. It has been said that good judgment comes from experience; that experience came from bad judgment. From that day forward, I have been more circumspect when answering patient's questions about their prognosis.
Children with advanced illness can be disarmingly straightforward. An adolescent girl with osteogenic sarcoma called me one night to say she had some questions and wanted to see me. I drove to her home. Her parents, who were still grieving the death of her only sibling a year earlier, were seated outside. Before the patient could ask her questions, I said, "I need to know what kind of answer you want. Do you want the truth.or do you want me to make up a story?" She said she wanted the truth. In brief, she wanted to know if her advancing symptoms meant she was dying. In as gentle a manner as possible, I let her know that her cancer was spreading and that there was little likelihood of its being cured. She responded to each answer with horrendous crying that lasted for several minutes. When she regained her composure, she said that if she was dying she wanted some chocolate cake. Her parents had told her she could not have any cake because a "healer" they had consulted in desperation had told them that if she refrained from eating sweets her cancer would be cured.
We generally think of communication in terms of verbal communication. Yet nonverbal communication is very important. Goffman (1967) reminds us that glances, gestures, positioning, and things such as tone and cadence communicate as loudly as words.
A patient of mine with a seriously disabling but not life-threatening illness flew to a distant city for a medical consultation. As she left the doctor's office he handed her a religious medal. She misinterpreted this gesture as an indication that she was going to die. The physician did not realize that his benevolent, nonverbal gesture would be misinterpreted as a death sentence.
A surgeon once told me that he experienced fear and discomfort when he had to deliver what he called a "death sentence" diagnosis. He never fully entered the patient's room, but stood near the door and talked steadily until he backed out of the room without letting the patient say a word. His greatest fear was that if he stopped talking, the patient might say something that would cause the surgeon to lose control and cry.
Conspiracy to Withhold Information
Occasionally a family requests that their relative not be told the diagnosis. They ask, in essence, for health care professionals to engage in a conspiracy to delude the patient. The doctrine of informed consent, now widely employed in the United States, undercuts the development of such informational conspiracies that were once quite common.
CHALLENGES FOR COMMUNICATION
Despite the myriad considerations and obstacles, the physicians must surmount these barriers if they are to effectively meet the challenges they face in communicating with patients and families. These challenges include communicating the diagnosis, communicating hope, and communicating death.
Challenge to Communicate the Diagnosis
What should a patient be told? Stewart Alsop in his memoir, Stay of Execution (1973), wisely suggested that a patient should be told "the truth, and nothing but the truth-but not the whole truth." Diagnosis and prognosis should be conveyed in unambiguous language, free of euphemisms. The doctrine of informed consent, now the rule in the United States, mandates that patients be told their treatment options, possible side effects, and the anticipated outcomes of various treatment alternatives.
Patients and families need time to understand the implications of diagnosis, prognosis, and treatment alternatives in serious illness. Arthur Ablin, a pediatric oncologist at the University of California Medical Center in San Francisco, invites the entire family (including grandparents) to the diagnostic conference. After discussing the diagnosis, prognosis, and treatment alternatives, Dr. Ablin and his staff answer questions. The family is then given an audiotape of the entire session and told to replay it as needed to clarify what has been said.
Breaking the news about a difficult diagnosis is never easy. When it is done over the phone, as is sometimes the case, complications can develop. I received a call from a friend a while ago who told me that he had recently had an appointment for a complete annual physical. A week later the doctor called and said, "The lab tests are back, Tom, and you have cancer of the prostate." Tom asked what that meant and the doctor replied, "Well, Tom.we all have to die some day." Although this doctor was trying to break bad news in a gentle way, his awkwardness created confusion and fear in his patient. When communicating a diagnosis, physicians and other health professionals must find a balance of candor, clarity, and compassion.
Challenge to Communicate Hope
One of the major problems associated with informing patients about their diagnosis and prognosis is reducing their hope. Some patients tend to minimize the significance of their illness; others automatically fear the worst and leap to unreasonable conclusions. When I worked in a cancer center, local newspapers wrote about a sudden increase in deaths of young women from cervical cancer. After this article appeared, on the evening following biopsy of her cervical lesions, a young single mother made a successful suicide attempt. Later we learned that her lesion was not malignant. For whatever reason, fear of cancer supervened and she saw no reason to hope that she might survive.
Hope has been described as the chance greater than zero of a positive outcome. Hope is a fragile element in advanced illness. It can also be a powerful force in influencing the course of illness. Those of us in hospice who worked with her will always recall the lady who said repeatedly, "I am going to walk again, Praise the Lord." She had advanced breast cancer with metastases to her spine that caused paralysis from her waist to her toes. She was bedridden but filled with confidence. We did not dare confront the strong and obviously misplaced hope that was central to her being. We knew she would never walk again. Yet somehow before her death, she was able to boost herself up with both arms and took several faltering steps.
On the other hand, a physician I worked with many years ago told me how a fellow medical school professor was diagnosed with a brain tumor that was deemed to be malignant because of its characteristics. His fellow physicians gradually stopped visiting; he was transferred to a back room on the ward and his condition deteriorated. After he died, an autopsy revealed the presence of an encapsulated, nonmalignant brain tumor that could have been safely removed by surgery. The physician who died was described as "catching the diagnosis" (an incorrect diagnosis) from his medical colleagues.
Challenge to Communicate Death
When death is sudden and unanticipated, physicians are sometimes involved in informing the next of kin. It is essential that the person informing the survivor be unambiguous and that the message be conveyed in a timely manner. Several years ago a patient died unexpectedly during the night of a heart attack after being hospitalized for an unrelated illness. Her physician was called and told of the untimely death of his patient. The physician, in turn, telephoned the husband and said, "Your wife is no longer with us." The husband arrived at the hospital the next afternoon during regular visiting hours and inquired about his wife's present location. Shortly thereafter, I was called to help deal with the husband's justifiable rage, confusion and loss. He had no idea from what he had been told that his wife had died during the previous night.
While on active duty with the U.S. Navy Medical Corps during the Vietnam War, I observed the impact of announcing an unanticipated death to a seriously disturbed patient on a locked psychiatric unit. The hospital administrator received notice that the wife of a patient had died of an unanticipated heart attack. As the officer on call for the psychiatric unit, I was notified. I had the option of not informing the husband, who happened to be on a locked unit because of his violent physical outbursts, and deferring the situation until his own psychiatrist returned from a holiday weekend three days later. I believed that the man deserved to know that his wife had died. I made several phone calls to check on the accuracy of the information. Then I went to the man's ward, read his chart and asked a corpsman to wait outside the door of a conference room. After I introduced myself to the man, I told him I had some difficult news for him. I gradually told him that we had learned that his wife had experienced a heart attack. I next told him that his wife did not recover, that she had died. His initial reaction was one of disbelief followed by anger rising out of the paranoia that precipitated his psychiatric hospitalization. In time he came to sense that I was telling the truth, and his anger turned to tears and heavy sobbing with outbursts of guilt and self-recrimination. During the next hour he managed to put the difficult situation into reasonable focus, which prompted me to ask the commanding officer for permission to authorize emergency leave so the man could attend to his wife's death and organize her funeral. The man flew by commercial airline, behaved in a rational manner, and upon his return several days later was discharged from the hospital.
A different challenge developed for me several years ago, when I was working at a cancer center. A young woman was dying of cancer. Her parents, who lived several hundred miles away, were called and told that it was time for them to come to say goodbye. On their way to the city where their daughter was hospitalized they were both killed in an auto accident. The team treating the daughter debated about whether or not to tell her why her parents could not visit as promised. One faction said that the shock would surely kill her; the other side claimed she deserved to know. Reluctantly, her physician decided to tell the truth about what had happened. To everyone's surprise the young woman smiled and said, "I'll see them tomorrow." The next day she died.
HOW HOSPICE CAN HELP
Hospice has proven to be tremendous resource for dying persons, their families, and their physicians. Since its inception in the United States in the mid-1970s, hospice has expanded to more than 3,000 programs that provided care to some 700,000 patients last year. Excellent communication is at the center of hospice care at its best. Hospice facilitates communication between physician and caregiver, relays concise and clear reports on changes in patient condition to the treating physician, and coordinates the work of the interdisciplinary team with family and community caregivers. When indicated, hospice serves as an advocate for the patient and family. Hospice also serves to clarify physician orders, to implement strategies for pain and symptom management, and to prepare the patient, family, and caregivers for anticipated changes in the patient's condition.
All of this requires excellent, clear, and timely communication among hospice staff as well as between the attending physician and the patient and family. The ease of communication among hospice staff enables rapid response to calls for information or assistance, 24 hours a day, seven days a week. Hospice programs get some idea of the importance of availability through the way in which patients often make a night-time call within a few days of enrolling in hospice "just to see if someone is going to answer."
SUMMARY AND CONCLUSION
Communication is critically important during end-stage illness, especially when discussing matters related to dying and death. The clearer the message, the more likely it will be received, understood, and responded to. Euphemisms generally have no place in communications in advanced illness. Each physician has his or her own particular preferences in receiving and responding to messages. Patients and caregivers should ask for clarification on the best way to contact a physician when help is needed. Advance directives clearly communicate patient preferences for care at the end of life. Preparation of these documents can facilitate communication if and when the illness progresses. Hospice can be of great assistance in easing communication when patients experience increasing symptoms. Hospice personnel are available 24 hours a day, seven days a week. They know the patient, are expert in pain and symptom management, and will make visits to the home as needed.
To conclude, I want to share an example of communication with a patient with advanced illness. The physician is Sir William Osler, the most famous practitioner in American medicine. The patient is a little girl with a fatal illness. The story is told in a letter written by the mother and published in Harvey Cushing's biography of Dr. Osler (1940):
He visited our little Janet twice every day from the middle of October until her death, a month later, and these visits she looked forward to with pathetic eagerness and joy....Instantly the sick room was turned into a fairyland, and in fairy language he would talk about the flowers, the birds and the dolls. In the course of this he would find out all he wanted to know about the little patient. The most exquisite moment came one cold, raw, November morning, when the end was near, and he brought out from his pocket a beautiful red rose, carefully wrapped in paper, and told how he had watched this last rose of summer growing in his garden and how the rose had called out to him as he passed by, that she wished to go with him to see his "little Lassie." That evening we all had a fairy tea party, at a tiny table near the bed, Sir William talking to the rose, his little lassie, and her mother in a most exquisite way. And the little girl understood that neither fairies nor people could always have the color of a red rose in their cheeks, or stay as long as they wanted in one place, but that they nevertheless would be happy in another home and must not let the people they left behind, particularly their parents, feel badly about it; and the little girl understood and was not unhappy.
Lamers: Chapter 7
Alsop, S. (1973). Stay of execution. New York: Lippincott.
Aring, C. (1967). The understanding physician. Detroit: Wayne State University Press.
Calland, C. (1972). Latrogenic problems in end-stage renal failure. New England Journal of Medicine 287(7):334-336.
Cushing, H. (1940). The life of Sir William Osler. London: Oxford University Press.
Goffman, E. (1967). Interaction ritual. New York: Anchor-Doubleday.
Lamers, W. (1992). Hospice: Enhancing the quality of life. Oncology
Lamers, W. (2001). What caregivers need from doctors. Washington, DC: Hospice Foundation of America.
This article originally appeared in Living With Grief: Loss in Later Life, Kenneth J. Doka, Editor, © Hospice Foundation of America, 2002.