Learning How Patients Handle Illness
I needed to be in control of my disease.
Perceptive physicians continually find themselves awestruck by how pa- tients and their families cope with illness and injury. Those doctors who do not take the time to listen and learn from their stories squander the oppor- tunity to grow professionally and provide crucial support.
How do patients handle bad news? Does the physician have to be reluc-tant to deliver bad news? What can we learn from examining these ques- tions? For a class session, I invite speakers from CanSurmount, a group of volunteers who have had cancer treatment and now counsel patients with newly diagnosed malignancy similar to their own. My request of them is a simple one: “During this session, I hope that we can help the students see the diversity of ways that patients handle serious illness. What do you ask of your physician and of others who are involved in your care?” Each of the speakers has had a variety of tests and treatments, including surgery, chemotherapy, radiation, and bone marrow transplantation. Each mode of therapy has been rigorous, with unpleasant side effects. The speakers describe their experi- ence: what it was like, what some of their losses were, and their relationship with their physicians. Here are excerpts from their stories.
One man was 41 years old when lymphoma was diagnosed, and he had chemotherapy and a bone marrow transplant.
With cancer, you can feel good one day, bad the next… The first doctor said, “It’s cancer; it’s not serious; you’ll need two doses of chemotherapy.” The second doctor said, “It’s stage IV [the most serious stage], treatable, not curable, non-Hodgkin’s lymphoma.” He went on [with what he was saying], but I was on page 1 while he was on page 5….I don’t know if compassion can be taught. When they’re dealing with cancer, doctors need to slow down, to take the time with people, to talk the same language, to ask if [the patients] understand. . . . Everybody else thought I was doing great, but no one knew how I really felt….I was really scared for my family. . .
. The biggest thing is the uncertainty, what is going to happen to my family and me.
. . . There are things that have happened to me that have been harder than cancer.
A 25-year-old woman was told she had cancer of the ovary when she was 23. After her second operation, she developed pneumonia and peritonitis, a serious abdominal infection.
[It’s] not just that I had cancer… but so much more….I can’t have kids….I had memory loss from chemotherapy…. What do I ask of my physician? Be positive. Give me hope. One doctor said, “There’s a 50–50 chance and that’s all I’d give you.” [My response was]: “If you’re going to focus on statistics, and not on me, I’ll change doctors.” Be honest. Tell me everything. Tell me over and over again. Tell me about side effects. If I know it’s a possibility, I can deal with it later on. Tell me about support groups. Encourage people to go into support groups. If I ask for a sec- ond opinion, I’d rather not have my physician threatened by that. Give me a good joke…. My dad blamed himself because [the cancer history] was [on] his side of the family.
A middle-aged woman spoke about her illness, non-Hodgkin’s lym- phoma, which had been diagnosed twenty-four years previously.
It was a great shock to look at marriage, birth, and death all at once, in a very short time…. [I found] something to live for in our daughter…. My physician and I were a good match. She knew it and I knew it….A lot of physical changes took place in my body [as a result of the treatment]: instant menopause, no more children…. What I wanted to know right away was a lot of information. I was looking for causes. Why? What can I do to prevent it [from recurring]? . . . There were many wonderful people: the physician, a good family support system. It was hard for my mother….I hada strong faith background. The pastor asked, “Do you want people to know?” Back then there was a stigma [about having cancer]…. My physician wanted to know about me as a person. [She told me], “This is treatable.”… She was very honest. [She told me] the truth, with hope…. When you have cancer, you feel like a lot of things are out of your control, so when there is the opportunity for choice, you want it….I don’t believe I realized what it was like for my husband…. He saw his role as looking after our child… protecting me… limiting me from wallowing…. [In dealing with other problems in our lives], we can look back on our experience [with my cancer] and say, “We went through this together.”
He was 28 when he was given the diagnosis, non-Hodgkin’s lymphoma, after he noticed some abnormal lumps. He had been nauseated for about six months, but he thought the cause of the nausea was the nearby sewage treatment plant.
[The doctor said], “Looks like you got yourself cancer.” I didn’t want the medical jargon. I needed things in layman’s terms, an optimistic approach, what to look for- ward to with side effects…. Doctors became a support group…. Humor was im- portant…. On day 1I asked, “Why did this happen to me?… Life goes downhill very fast. . . . The doctor said, “This is a common cancer. Your prognosis is very good.” . . . I wondered, “Am I still going to have a job?” . . . Everybody—friends, co-workers, religion, doctors, people I’d never met—becomes your support group. Others don’t want to be with you…. Chemotherapy was very intimidating at first. I had no idea what it was….I had loss of energy, loss of hair, not as bad for guys….I didn’t want my family to have to see me die….I planned my death. I put photo al- bums together. I wrote my obituary.
When stage IV non-Hodgkin’s lymphoma was diagnosed, she was 33. Her symptoms were lumps, fatigue, and night sweats.
I knew I was sick but I had trouble getting someone to believe me. . . . The hot flashes and tiredness… were all explained away because I was a woman…. [After the biopsy], I called the clinic, because no one had called me. [When the doctor spoke to me], I think he was reading the report for the first time. . . . I had nine months of chemotherapy. I threw up a lot, but I felt better a lot…. When I was re- tested, the chemotherapy had helped, but it still hadn’t been complete….I hada bone marrow transplant. [The initial encounter with the physician at the medical center was] the worst encounter I ever had. The doctor just rattled off statistics like
I wasn’t a person, just a statistic. . . . [After the bone marrow transplant] when they told me there was a “2 percent gray area,” it wasn’t fair that they couldn’t tell me I was 100 percent cured….I was depressed and I saw a psychiatrist and a psycholo- gist. [Later I was told], “not a trace of cancer.”… NowI live for [each] day…. It’s two years in remission. . . . I’m very cautious about my future.
Before her diagnosis of ovarian cancer, when she first started to feel ill, “the doctor thought I had some kind of infection.” When her symptoms persisted, she went to a hospital emergency room.
[I knew] I needed some help…. [After examining me and doing some tests], the emergency room doctor told me, “You have a bowel obstruction, but that’s not the real cause. You have cancer.” . . . The three days between admission and surgery were valuable days, meetings with the oncologist and the surgeon, the opportunity to educate myself…. It was important to have some time to think about it… to speak to my parents, to put my business on hold, for my husband to read about [my diagnosis]…. The nurses gave me huge amounts of information regarding chemo- therapy….I needed to have a lot of information….I needed to be in control of my disease. The doctor xeroxed everything. It was important for me to read this, to see their evaluation, to read it at my leisure….I liked the second oncologist better. He believed very much in treating me as a whole person. [He told me], “I need to know how you’re feeling. Call me anytime.” He recognized how much control I needed….I was waiting to hear the word “curable.”…I read in the doctor’s notes, “The patient understands that the disease is incurable.”…I know that I have the disease that will ultimately kill me…. My husband and I coped in various ways. As we waited for the results of the tests, we asked ourselves, “What is the worst that can happen, the best that can happen?” You can cope with something in be- tween…. We did not think too far ahead. … We avoided asking, “What if?” . . . We deal with it in chunks of time. I would encourage physicians not to deal with too much at a time. . . . I felt cheated that it had happened to me so young.
WHAT DO WE LEARN?
Physicians’ contacts with patients occur in short encounters, often last- ing no more than fifteen minutes. But their story evolves during the inter- vals between doctor visits, and we may know nothing about the larger drama unless we ask. Physicians can enhance their patients’ ability to cope with the burdens of illness by appreciating how they handle illness and what they need from physicians. Here are some lessons from the patients’ stories.
Patients need to be seen as individuals and not narrowly defined as “cancer pa- tients.” They need compassion and repeated expressions of understanding and empathy. They need a consistent message, not conflicting information from different physicians. They need a clear, jargon-free explanation about what to expect from their illness and the treatment, but not so much infor- mation all at once that they are overwhelmed. Important information needs to be repeated. They need hope, even in the face of uncertainty. Sometimes they need humor.
Patients need time. They may be devastated by the diagnosis, but then they mobilize their strengths and resources. During the interval between being informed of a diagnosis and beginning treatment, patients think, study, and talk things over with others. They begin to accept change brought about by the illness and learn how to cope with the change. They integrate the experience of their illness into the longer story of their life,
and they review the story of their own lives and ways in which they have coped with other crises.
Patients need a sense of control, not so much to “be in charge” as a feeling that their situation is not “out of control.” When there are choices to be made, they want a role in making them. Even though the physician has the technical expertise, most patients need to be partners in making the important deci- sions.
Serious illness often represents many losses—loss of energy, loss of con-trol, loss of independence—and the disruption of the rhythm of one’s life and day-to-day activities. There may be loss of contact with others; illness can be very isolating. Relationships are disrupted; serious illness can pre- cipitate divorce. In response to illness, well-meaning family and friends of- ten do not know what to do, how to behave, how to inquire, and how to provide support. There is loss of status; even well-meaning people can be patronizing.
It does not necessarily follow that because people have cancer, they will become depressed. If depression is present, the physician should address that as a separate problem. Most people are able to talk about their illness and their feelings, but some cannot. If they cannot, then the role of the physician is to help patients express themselves. It is better than guessing.
Patients cope in different ways. The role of the family is important. Over and over, we learn that illness is a family affair. Some patients can rely on family and some cannot. Some can rely on their physicians; others cannot. There are other sources of support: faith, religion, and philosophy of life; a strong inner self—what one student described as “inner serenity”; the workplace with its people and its routines; friends; favored activities and hobbies; pets; literature; and psychotherapy. Individuals who have had a similar illness can help. They especially know the details of the illness, the ups and the downs, the nuances of physical and emotional feelings, what can go wrong, and what minor symptoms mean. Support groups can help.
Even if one is not “religious,” most patients have a spiritual dimension to their lives, which provides yet another resource for dealing with illness. They see and seek meaning and metaphor in their illness, sometimes with- out even knowing it. They express it in different ways; they say “I’m being punished” or “It isn’t fair.” Every illness is a potential spiritual crisis; finding meaning in illness is a worthwhile pursuit. Denying patients the opportu- nity to address the spiritual dimensions of illness is a disservice to them. Searching for meaning in illness is potentially enriching for patients and for professionals.
A physician can discover how patients cope and what their strengths are by lis-tening carefully to their stories. If there are specific questions to ask to encour-
age patients to talk, these are the obvious ones: “What’s this like for you? How’s your morale? How have you dealt with crisis in the past? Who do you turn to for moral support? Who is your community? Where do you find your strength?”
But not all patients and their families cope well and find relief. Not all resolve their fears and uncertainties and address their feelings. Those situations provide physicians and others yet another opportunity to intervene in a way that is healing, enriching, and strengthening for the patient and the family. While much of the time, the patient is the center of the drama, sometimes other important dramas are going on in the patient’s family, and complex relationships need to be explored. Do we know the whole story? Do we really understand what it is like?
Only when we focus on the patient’s experience do we begin to appreci- ate the richness, depth, and challenge of being a physician. The next sec- tion deals with what it is like to be a physician and begins with the diary of one day in the life of a doctor.