Prescriptions for Health Providers

Tovia G. Freedman, DSW, LCSW

Disclosures

Cancer Nurs. 2003;26(4) 

In This Article

Patient Recommendations

Patient-participants all agreed that serious information should be imparted to them when they are in their street clothes and seated at an equal eye level with physicians. Patients recommended that an 'alert signal' or notice be given that the information at the next appointment is of a serious nature so the patient can bring a support person to the encounter, plan work or home schedule for the remainder of the day, prepare to listen, and be more able to maintain decorum and a sense of dignity in the physician's presence.

Patient-participants suggested that pictures and drawings they could take home would help them understand complex procedures such as axillary lymph node dissection, sentinel node biopsy, and various types of breast reconstruction. Descriptions of the lymphatic system, the way the drainage system and the blood flow works, the purpose of the nodes, how the nodes work, and what will be removed are necessary for informed consent to take place. Greatly appreciated was the physician who drew explanatory pictures on the examination table sheet. The full explanation of procedures can take place easily with a book of drawings and pictures, or color slides. This can greatly enhance comprehension by patients and simplify the physician's work.

Patient-participants who underwent immediate reconstructive surgery, as well as some of their physicians, said that the side effects of the surgery were 'greatly understated.' This included the immediate pain, the length of time required to recover and regain earlier energy levels, the numerous follow-up surgical procedures required to complete the reconstruction, and the unexpected additional office visits. The side effects related to chemotherapy included concentration and memory loss and 'feeling like I have a chemobrain.'[25] The patients all stated that they did not receive any warning that this would be a problem. Those using computers on the job experienced great delays in their work output as they had to relearn and retrain themselves to do tasks that previously had been automatic.

The patient-physician relationship is initially fragile, and can easily be undermined by simple lapses. When the healing time takes longer than expected or the side effects turn out to be a surprise, the sense of trust so important to the patient-physician relationship is damaged and taints future interactions.

The younger women recommended a discussion concerning their future fertility and treatment side effects. In the rare instances (two) wherein a fertility discussion was physician initiated, it was by young, female physicians. In the 130 medical encounters observed, there was no discussion of sexuality and the effect that chemotherapy would have on sexual functioning. Many women said, 'They told me that I would go through the change, you know menopause, but no one told me what this would mean to my body, what I should expect, how my mood would be different, and what I could do about this.' Although hair loss was usually mentioned as a side effect associated with many of the chemotherapies, by and large, women did not realize that they would lose all their body hair. Consequently, when this did happen, the women were greatly distressed and believed this is outside the norm. The loss of pubic hair often is difficult for patients to discuss, and in this study, no physicians mentioned this as a side effect of treatment.

Photographs of the breasts taken at the time consultation was sought for breast reconstruction caused distress for some patients. An explanation for the purpose of such photos and time allowed for the patient to consider whether she wanted these taken would offer a degree of voluntary consent to the patient along with a sense of her control over the circumstances. In some cultures, such photographs violate certain rules of propriety, and the process may be extremely stressful. One 26-year-old Asian patient found picture taking to be the most humiliating aspect of her cancer care. Patients are hesitant to voice concerns about such procedures because of their dependence on the physician. Patients worry that 'questioning the doctor' will not bode well in the future because the physician will be offended. Also, picture taking often occurs so rapidly that the patient has no time to reflect or raise questions.

Before and after surgery, patients are not satisfied to be seen by the house staff or the physician on call:

I like to see the doctor before the surgery so I can remind him that he should get rid of all the cancer and not leave any behind. I just felt more comfortable talking to him before I went under.

Every patient-participant wants to be 'reassured by my own physician about how I am doing, and I want to know that he still cares about me as a person, that I am not just another surgical case.' However, when physicians themselves explained ahead of time that they would not be at the hospital after surgery and told the patient who would be attending, this was acceptable.

The language of cancer is difficult and, given the emotional climate that surrounds most cancer conversations, often hard for new patients to keep straight. For instance, patients in general have a poor understanding of the meaning of 'negative' as it relates to test results. Often the term 'negative,' outside medical vocabulary, implies a bad result. When the message begins with the term 'negative,' the patient is unable to hear the content of the message given by the physician. Being estrogen 'positive' is considered a good thing in regard to treatment options and being node negative is also good. Therefore, when patients hear 'everything is negative,' or 'you are ER positive,' they believe there is something wrong. Physicians can clarify the terminology when offering this type of information by saying, 'I have good news for you,' which can diminish the stress experienced by patients.

Patients experience other misunderstandings when they come into the cancer environment, and some of these are perpetuated by media and public health messages, particularly those related to a healthful lifestyle and diet. As some patients have said, 'I did all the right things and I got cancer anyway.' Health messages are often contradictory such as the recommended age for first screening mammography; dietary recommendations subsequently found to be inconclusive,[26] and other health 'messages' that create a sense of self-blame when cancer does develop. The whole area of genetics and family history of breast cancer has fostered misunderstanding as well.

No one in my family ever had cancer. I was the first one. So, I never really had to worry about it. I did all the things they tell you, but I didn't really believe I would ever get this. I didn't do anything to look out for it.

Some women, even after diagnosis and treatment, still have doubts about whether they really did have cancer. They rationalize: 'Maybe the doctor just wanted to cut on me' or 'I still have my breast, so it can't really be that bad.'

Because genetics has been so extensively associated with breast cancer by the lay media, there are women who believe that a family history of breast cancer is the sign that they should look for it in themselves. If there is no known family history, it does not make sense to some women that they experienced breast cancer. The reality that the advent of breast cancer raises for some is that it must be a mistake because 'no one else has it; my people don't get it.' This mistrust of the medical system, not historically unfounded, is perpetuated when a patient does not have a good understanding of how the cancer develops, what the treatments involve, what she can expect in terms of side effects from the treatments, and her life expectancy. Many of these patient-participants, as well as those in other research studies,[27] wanted a discussion about prognosis.

Religious or spiritual patients found it very reassuring to know that physicians understood and sometimes even joined in their beliefs: 'I felt reassured when the anesthesiologist held my hand and said, 'God is with us.' Then I knew that I was in good hands and I would be okay.' Even if a physician does not hold such beliefs, or prefers not to share personal beliefs, respect for the patient's beliefs is of great comfort and importance.

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