Practice A Patient’s Journey

Communication during breast cancer treatment

BMJ 2009; 339 doi: http://dx.doi.org/10.1136/bmj.b4166 (Published 23 October 2009) Cite this as: BMJ 2009;339:b4166
  1. Susan R Harris, professor emerita1,
  2. Ivo A Olivotto, professor and head, radiation therapy program2
  1. 1Department of Physical Therapy, Faculty of Medicine, University of British Columbia, 212-2177 Wesbrook Mall, Vancouver, BC, V6T 1Z3, Canada
  2. 2BC Cancer Agency and University of British Columbia, Vancouver, BC, V5Z 4E6, Canada
  1. Correspondence to: shar{at}interchange.ubc.ca, iolivott{at}bccancer.bc.ca
  • Accepted 8 June 2009

Susan Harris shares her experiences of treatment for a second primary breast cancer, with the hope of improving care for others who face this difficult diagnosis

When I began my second cancer journey in 1998 I was a professor in the faculty of medicine at a major research university. As an experienced physiotherapist I had considerable knowledge about the disease, having treated cancer patients in my early years of practice, and having experienced one less serious episode of breast cancer already. Compared with many others who face this frightening diagnosis I was considerably better “armed” to navigate the complicated cancer care system. Even so, although getting through treatment—12 rounds of chemotherapy, five weeks of radiation, and four separate operations—was my primary occupation, serving as my own navigator turned out to be a full time job.

Communication during cancer care

In my experience in Canada, and that of many of my cancer “colleagues,” cancer care occurs in a hierarchical model. Each team member assesses the patient independently and produces an individual report. All reports are then filed in that healthcare agency’s chart. It is unusual for there to be a case manager or any team meetings. Most cancer patients, especially those with solid tumours, initially meet with a surgeon who makes decisions independently of the oncologists. Once surgery is completed, the patient is referred to one or more oncologists, who each provide independent advice. In essence, little “cross-talk” occurs, and the patient is left to serve as his or her own case manager.

In my experience, this “silo” approach (a system that is unable to operate in conjunction with other systems) became not only problematic, but also potentially dangerous, especially because more than one healthcare agency was involved, as is often the case in cancer care. In my first nine months of treatment (1998-9), I interacted with 35 different health professionals at four hospitals or healthcare agencies (box 1)—none of whom seemed to communicate with one another.

Box 1 Health professionals involved during the second cancer journey

  • Anaesthetists (n=3)

  • Chemotherapy nurses (n=6)

  • Clinical psychologist

  • Dentist

  • Emergency doctor

  • Genetic counsellors (n=3)

  • Gynaecologist

  • Family doctor

  • Family practice resident

  • Home care nurse

  • Medical geneticist

  • Medical oncologists (n=1)

  • Pathologists (n=2)

  • Pharmacist

  • Physiotherapist

  • Plastic surgeon

  • Radiation oncologist

  • Radiologist

  • Surgical oncologists (n=2)

  • Ultrasonographers (n=2)

  • X ray technicians (n=2)

  • Vascular surgeon

After my bilateral mastectomy (with placement of chest tissue expanders) in 1998, I developed skin flap necrosis at the mastectomy site, thought to be the result of an infection. The next week, I was scheduled for separate medical appointments with my surgeon, plastic surgeon, and medical oncologist, all at different healthcare facilities. Each prescribed an oral antibiotic without realising that the others had also prescribed one. Had I not been a health professional and realised that each was a different antibiotic, I might have taken all three. As my own case manager, I was responsible for relaying this information to the three doctors.

During my second meeting with the medical oncologist, I was advised that I would need an electrocardiogram before beginning chemotherapy. Once again, it was up to me to tell the oncologist that this had been done two weeks earlier when I had my operation. Because of the lack of communication within the team, it was up to me—the patient—to sift and transfer the information, and consequently, save precious dollars in our socialised healthcare system by not undergoing a second electrocardiogram.

The patient is not always the one who cannot “hear”

There is a longstanding and widely prevalent myth that, especially during diagnosis of a life threatening illness, patients do not hear and absorb what is being told to them because of heightened anxiety. In other words, they are unable to filter and retain the bad news.

I had read about this “myth” and wanted to be fully prepared when I met the surgeon to hear my biopsy results. I therefore took with me to the appointment a colleague who could listen objectively and take notes, a notepad for myself, and a tape recorder. My surgeon was technically proficient and kind, but he was not a good communicator. Although it was clear that further surgery would be the first step in my upcoming treatment plan, neither my colleague nor I could figure out from his confusing explanation whether the second treatment would be chemotherapy or radiotherapy. He finally drew a diagram to clarify the treatment course. I have often wondered whether, if I played the tape recording to a group of medical students, they would be as confused as my colleague and I had been.

Remembering that communication is a two way process and to stop blaming the patient for not being able to “hear” is crucially important. Fortunately, most medical schools now provide training to enhance communication skills, and our own cancer agency uses real patients to assist in this training for oncology residents.

Do not assume that your health records will be transferred across facilities

Not only is there far too little communication among the various cancer care team members, but for treatments involving different healthcare agencies or hospitals, patient assessment information and written records are often not passed on to other facilities.

Immediately after I had my first operation in 1994, a nurse told my sister that I was being kept in the recovery room longer than usual because of “difficulty breathing.” Because I was not planning on having future surgery, I did not bother to ask what that “difficulty” was.

Three and a half years later, I visited a different hospital (within the same university based healthcare system) for a preoperative assessment for the bilateral mastectomy scheduled for the next day. The anaesthetist asked me about any previous problems with anaesthesia. I explained that I had experienced breathing problems during my previous surgery but did not know their nature. Although the mastectomy was scheduled to take place in a hospital within the same system, no records had been transferred between the two hospitals. Fortunately, I overheard the anaesthetist asking to have the records faxed to him. However, it was not until I was ushered into the operating room the next day that the anaesthetist confirmed receipt of the operative records and that the “breathing difficulties” had been the result of a last minute surge of analgesics, rather than any respiratory decline on my part. The last breath I took before the oxygen mask was placed over my face was literally a sigh of relief.

Suggestions for improving cancer care

I encountered more than 30 healthcare practitioners during my second cancer journey. Most of them were wise, compassionate, technically proficient, and had an evidence based approach, but they failed to function as a team. I was left to be my own case manager, which involved sorting through and passing on the huge amount of information received from each of them. I hope the tips and resources provided in this article (boxes 2 and 3) will help to inform healthcare providers how better to serve patients who are being treated for cancer and make the journey more navigable for the patients themselves.

Box 2 Tips for health professionals

  • Provide patient friendly written fact sheets, protocols, and “dos” and “don’ts” for every medical and surgical procedure—for example, a chemotherapy schedule

  • Assign someone (other than the patient) to be the case manager for the healthcare team. This could be the family doctor, an oncologist, a social worker, or a nurse

  • Ensure that charts from other hospitals or healthcare agencies are secured and read before seeing the patient, scheduling surgery, or setting up any diagnostic or medical procedure.

Box 3 Tips for patients during the cancer journey

  • Take a colleague, friend, or family member with you to take notes at each medical visit or, better still, take a tape recorder and a colleague or friend

  • Ask for copies of all your medical reports and pathology reports so you can double check their accuracy and have a better understanding of what is happening

  • Do not be afraid to speak up when you are becoming frustrated with information overload or with conflicting information. Putting your concerns in writing (tactfully and positively) will be a lot more helpful than verbally criticising the person involved

  • Don’t forget to praise your healthcare provider when they do something right (which is often). Once again, a written note or memo of thanks provides a permanent record of the information so that it will not be lost or misinterpreted

Cancer is an overwhelmingly frightening and complicated disease. Multiple diagnostic tests and procedures exist, plus a variety of different operations, adjuvant treatments such as chemotherapy and radiotherapy, anti-nausea drugs, antibiotics, pills to take with meals, pills to take one hour before or two hours after meals, pills to take with lots of water, and so on. An incredible overload of information has to be “sifted” every step of the way—an almost impossible task, even for someone with a PhD, an appointment in a faculty of medicine, and nearly 30 years’ experience as a healthcare professional. How can we possibly expect the “average patient” to sift through and communicate all this information?

Hopefully we can work in partnership, as patients and healthcare professionals, to make this sifting process easier. Some of the steps I have suggested are simple and not costly; others will require some time, effort, and expense. We should all take responsibility, in each of our roles, to improve the current system.

The personal burden of a cancer diagnosis—one I faced twice in less than four years—was one of the greatest challenges of my lifetime. I believe we can work together to lighten this burden by improving the organisation and transfer of the large amount of information that accompanies this diagnosis. This is my hope and dream for all future cancer patients. The responsibility belongs to all of us. We can, and must, do better.

Box 4 Helpful types of communication experienced on the cancer journey

  • Protocols or patient guides written in lay terminology—for example, Fine Wire Breast Biopsy “Dos” and “Don’ts”, Guide to Subcutaneous Self-Injection, Suggestions for Dealing with Constipation

  • Four pronged educational approach to giving self injections (of erythropoietin). Firstly, the oncology nurse explained and demonstrated the procedure; secondly, a video was shown on conducting the procedure; thirdly, I practised the procedure with a saline injection under nurse supervision; fourthly, provision of a written guide outlining the procedure to take home

  • Having the breast surgeon draw a diagram of the anticipated sequence of upcoming treatments—surgery followed by chemotherapy and then radiotherapy

  • Receiving photocopies of all major assessment and pathology reports (although the patient must request these)

  • My general practitioner visiting me in hospital the evening after my bilateral mastectomy was the best type of “communication” I could receive at that difficult time

Additional resources for patients

A doctor’s perspective

In describing her journey through two breast cancer experiences, Susan Harris raises several points about the lack of communication among the healthcare professionals she interacted with. Although she praises her team of healthcare providers for being “wise, compassionate, technically proficient, and having an evidence based approach,” Susan gives alarming examples about how poor communication among the more than 30 team members could have been dangerous.

As Susan’s radiation oncologist, I believe that we have much to learn from her less than positive communication experiences—the tips she has included for health professionals (box 2) and the helpful types of communication she experienced (box 4) are especially useful.

Susan’s tips are relevant for all types of health professionals, not just oncology specialists. General practitioners, family doctors, and medical students serving patients with any type of acute or chronic illness or disability would be wise to read and embrace her practical suggestions, such as providing written fact sheets to their patients about their illness and treatment, and ensuring that all relevant charts are obtained and reviewed from other hospitals and healthcare agencies before meeting with the patient. The increasing use of electronic records in many healthcare systems has the potential to reduce the gaps in medical information, but it will not necessarily improve communication. That is something each of us needs to embrace individually.

Assigning a case manager to help each patient to navigate the often complex healthcare system would be ideal, but the practicality of this suggestion—in terms of added cost and staff time—might hinder such a strategy being put in place. In contrast, Susan’s suggestion to patients to bring a friend or colleague (or tape recorder, or both) along to each medical appointment is a useful strategy that could help to accomplish the same aim.

The communication strategies that worked well for Susan (box 4) could be replicated in outpatient or hospital settings at minimal cost and are common practice in many such settings today.

Susan should be commended for raising these important communication issues, even a decade after she experienced them. Many of the suggestions she has provided in this article are available in more detail in the last reference in the additional resources box (Harris and Shew, 2001).

Notes

Cite this as: BMJ 2009;339:b4166

Footnotes

  • This is one of a series of occasional articles by patients about their experiences that offer lessons to doctors. The BMJ welcomes contributions to the series. Please contact Peter Lapsley (plapsley{at}bmj.com) for guidance.

  • Competing interests: None declared.

  • Provenance and peer review: Not commissioned, not externally peer reviewed.

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