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Editorial |
1 Division of Hepatobiliary Services and Department of Surgery, University Hospital Aintree, Liverpool L9 7AL, United Kingdom
2 Hepatobiliary Surgical Service, University Hospital Aintree, Liverpool L9 7AL, United Kingdom
Correspondence: Address correspondence and reprint requests to: Graeme J. Poston, FRCS; E-mail: graeme.poston{at}aht.nwest.nhs.uk.
Ten years ago, decision strategies concerning the treatment of patients with colorectal liver metastases were fairly academic, and these treatments were relatively cheap. Now, combination therapy that uses chemotherapy and biotherapy with radical liver surgery is becoming the norm, but there are complex multiple variables that will determine appropriate strategies. These variables include the extent of liver disease, resectable extrahepatic disease, response to prior chemotherapy, the role of adjuvant chemotherapy, and which regimen(s) are used, alone or in combination. Furthermore, modern multimodal therapy now costs in excess of $200,000 for each patient, and the overall 5-year survival for all patients with liver-only disease still does not exceed 20%.
Today’s patients are increasingly better informed than their predecessors and expect to be involved in the decision processes that determine their treatment protocol. We are in the era of the expert patient, so the publication of the article by Martin et al.1 in this issue of Annals of Surgical Oncology is both timely and welcome.
The concept of user involvement in the development, monitoring, and delivery of cancer treatment is accompanied by a reduction in the paternalistic approach to patients, thus encouraging patients to become actively involved in decisions about their care and more aware of their rights. This change places a responsibility on health care professionals to collaborate: therefore, patients’ opinions and decisions about their treatment are valued as an essential component for a successful outcome, and consideration of the whole person is incorporated into a more holistic approach. Martin and colleagues’ study concludes that different ways of describing the outcome of treatments for colorectal liver metastases can have a dramatic effect on patient treatment decisions. This observation has implications not only for what is said, but how it is said and by whom. Although one could criticize the use of hypothetical scenarios with an unlikely sample of young, surrogate/proxy and highly educated decision makers in an apparently simplistic model, their approach serves to emphasize the complexity of information giving and decision making in present-day multimodal therapy for colorectal liver metastases.
Patients with colorectal liver metastases present for treatment with the double blow of either synchronous disease or the discovery of recurrence after seemingly curative resection of their primary tumor.2 Their attitude, coping resources, ability, and willingness to be involved in decisions about their management may be influenced by previous experience of disclosure and information received.2,3 Recent studies in patients with newly diagnosed colorectal cancer, although small in sample size, show that only a minority of individuals with advanced colorectal cancer want to be involved in decisions about their care.2–4 Pertinent to Martin and colleagues’ study, in the context of multimodal therapy for colorectal liver metastases (where there are difficulties in translating scientific data from clinical trials into layman’s language), patient involvement in treatment decisions is influenced by the following2:
With use of a decisional role preference card sort and an information needs questionnaire, decision-making role preferences and information needs in comparative groups of colorectal and breast cancer patients have identified marked differences in decision-making role preferences but similarities in information needs.3 Although only 52% of breast cancer patients did not want to be involved, 78%, of colorectal cancer patients preferred to play a passive role in decision making. Eighty percent of colorectal patients and 61% in the breast group recalled the doctor’s making treatment decisions. The main concerns for information in both patient cohorts were in relation to cure, spread of disease, and treatment options.
One of the challenges illustrated by these two studies is how we inform colorectal cancer patients of the complexities of treatment decision making at the time of the initial diagnosis, because this involvement will influence how they determine future care, should they develop liver metastases. A later study confirmed that although patients wanted information and to feel included in the consultation, they did not necessarily want to be involved in decisions about their care.4 However, concern was expressed that these needs had to be considered in their contextual sense, because patients welcomed being involved in decisions about physical and psychological care.4
Although informed consent necessitates full information to patients, it does not currently require an interpretation or expression of comprehension of that information. As illustrated by the information source used in the study by Martin et al., lack of access to not only an adequate level of information, but also to the interpretation and application of accepted treatment guidelines (including potential risks and even uncertain benefits), seems to be a crucial issue in the provision of information and patient autonomy. Also, supportive, individualized information strategies may have positive consequences for accruing patients to clinical trials, thus increasing the evidence base for informed decision.5 How patients feel about how they have been included and involved in decision making can result in dissatisfaction and noncompliance6 and may contribute to an adverse outcome.7 Having the skills necessary to elicit patients’ concerns and to meet their information needs and decision-making preferences are now core issues in cancer care. Studies have shown repeatedly that many health care professionals do not have such skills,8–10 and it is a lack of these skills that seems to be the main reason why communication breaks down.11 The challenge therefore lies in assessing what information individual patients require, rather than using routine ways of supplying information that ignore the individual’s needs or preferences.12
The article by Martin et al. has identified the consequences of information giving and decision making in one area of treatment of advanced colorectal cancer. In multimodal treatment for this condition, the ability to communicate is a core requirement. It would be most useful to take this work forward in a multi-center trial involving real patients as a means of identifying a model for communication and information. From the perspective of clinical service delivery, involving patients in future studies could examine the effectiveness of new approaches to decision making through multidisciplinary working and new roles emerging in cancer care that emphasize collaborative working with patients and their families, addressing concerns, and meeting individual needs.
Received for publication September 1, 2005. Accepted for publication October 12, 2005.
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