br Patients with metastatic breast cancer
Patients with metastatic breast cancer receive in gen-eral many lines of palliative chemotherapy before treatment is stopped. Still, little is known about how the patients experience the patient-doctor’s communi-cation about continuing noncurative treatment. Pa-tients often receive their tumor-specific treatment at the hospital, meanwhile their palliative care needs (e.g., symptom control) are taken care of by palliative home-care services. There is a thin line between
benefits and risks with late lines of palliative chemo-therapy, and it CCK8 is well known that a lot of patients with incurable cancer have unrealistic expectations and believe they will be cured.1 For those with incor-rectly optimistic views, there are reports of increased risk for death at hospital and less chance of receiving end-of-life care according to their wishes.2,3
To be informed is not always the same as under-standing one’s disease prognosis.4 Furthermore, not only patients but also doctors tend to exaggerate
Address correspondence to: Jenny Bergqvist, MD, PhD, Depart- Accepted for publication: December 20, 2018. ment of Surgery, Breast Centre, Sankt Goransplan€ 1, 112 81 Stockholm, Sweden. E-mail: [email protected]
when it comes to prognosticate the survival of a pa-tient.5,6 In addition, the doctors very seldom recognize the patients’ misunderstanding of treatment goals.7 There are studies reporting that approximately 20% e30% of patients and caregivers had realistic expecta-tions, which proves that accurate understanding of prognosis and goals of palliative oncologic treatment can be accomplished, at least in some cases.1,8 Howev-er, denial is a strong coping strategy and/or defense mechanism for many people facing unacceptable truths, why we probably never will achieve completely and fully aware patients and family members. Further-more, the awareness of understanding with realistic expectations has been described to be a dynamic pro-cess for patients and caregivers, changing over time.8
The amount and pace of information have to be individually adjusted.9 Different desires for informa-tion, as well as of understanding, have been reported for different types of cancers.10,11 In general, breast cancer patients seek more information than patients with prostate cancer; however, gender is a possible co-founding factor, as men request less information than women.12 Patients’ awareness of disease and prognosis has been related to quality of life, although with diverging results. According to one study, a more accu-rate understanding of one’s terminal illness and prog-nosis was associated with worse quality of life,10 while
others did not find any impaired QoL association with end-of-life care discussions.3,13 Interestingly, phy-
sicians who deliver more optimistic views are perceived as more trustworthy and compassionate by the patients.14
In light of these conflicting views, our aim was to explore breast cancer patients’ preferences and per-ceptions of patient-doctor communication regarding continuous late lines of palliative chemotherapy, in a Swedish context.
Patients and Methods
We included 20 women with metastatic breast can-cer at the Karolinska University Hospital Solna. Inclu-sion criteria were as follows: $18 years old, Swedish speaking, patients with ongoing (at least second-line) palliative oncologic treatment. Patients who were cognitively impaired or non-Swedish speaking were not included. Patients received written information of the study by a nurse when they came for palliative chemotherapy and were interviewed after given con-sent at the outpatient clinic for chemotherapy treat-ment. The author J. B. performed the interviews alone with the patient in a room at the clinic and dictyosomes was made clear to the patient that none of their doc-tors and or nurses would get any knowledge of what they answered to our questions. Two women declined
Table 1 Sociodemographic and Disease Characteristics of the 20 Women With Metastatic Breast Cancer Interviewed According to a Semistructured Interview Guide
Number of Patients, Characteristics n ¼ 20 (%) Age
64 Married or living with partner
University 13 (65) High school 2 (10) Vocational school 5 (25) Years since primary diagnosis
Range 1e35 Median
8 Mean 10.3 Years with metastatic disease
Range 1e15 Median
4 Mean 4.5 Lines of palliative treatment
Range 2e8 Median
to participate when asked, based on tiredness and not enough time to stay for the interview.
We aimed at a maximum variation sampling with concern to years lived with metastatic disease, received lines of palliative chemotherapy, age, education, and socioeconomic status. Patient characteristics are outlined in Table 1.