The Decision to Limit or Withdraw Specific Therapies for Advanced Cancer and Hematological Malignancies: Physicians and Patients Points of View and Interactions.

The decision to limit or withdraw specific therapies (DLWT) in patients with advanced cancer is a complex process that is always painful for patients, relatives and professionals. For more than 10 years, shared decision making has been more and more emphasized. However, few data in the literature rely on clinical research. In order to understand their difficulties and issues, this study explores the determinants and modalities of DLWT and analyses the feasibility of different methods for investigating this decision making process.

We conducted a multi-center pilot study in oncology and hematology units of 5 institutions: 2 university hospitals, 1 general hospital, 1 cancer center and 1 private hospital. The study included two different approaches: an epidemiological section to identify the prevalence of these situations in different institutions and a qualitative study section exploring factors influencing the decision process. The epidemiological analysis included all hospitalized patients identified with advanced cancer for whom the question of DLWT was raised in a given week or during the two weeks preceding the investigation. The qualitative analysis was based on interviews with the referent oncologist (or hematologist) and his patient (conducted by a physician and a psychologist respectively) as well as interviews with other partners involved in the situation (care staff and relatives) depending on the center. Researchers also participated in multidisciplinary meetings and monitored changes in the decision over a three month period.

Of the 839 patients hospitalized in the inclusion week, the question of DLWT was raised in 3.5% of cases (no=30) and in 14.3% (no=27 of 188 patients) when excluding outpatients. All primary care physicians and 70% (no=21) of patients were questioned in interviews. Subjective determinants related to the physician/patient relationship, and their respective experiences seemed predominant in DLWT. Futility and poor general condition were the most frequently cited reasons to limit or withdraw specific therapies. The complexity of the DLWT was linked primarily to the uncertainty of benefit-risk balance, emotional aspects, communication issues and possible discrepancies between physician and patients' expectations. A mirror analysis of the two points of view indicated that the personal experience of physicians and patients, pertaining to the withdrawal of specific therapies, was often discerned as a failure or an abandonment of care. Patients' involvement in DLWT was often hindered by the complex communication in the end of life period. Communication training of health professionals, involvement of care staff and relatives, and early palliative care were factors facilitating the decision process.

This study demonstrates the feasibility of a multi-disciplinary qualitative approach to explore the DLWT process that is acceptable for physicians and patients. It shows the frequency of this type of questioning in hospitalized patients (about 15%) and proposes a pertinent analysis to understand these difficult and poorly investigated situations, in which uncertainty brings the subjectivity of each person to the heart of major ethical issues. This preliminary work prompts us to build a prospective study to develop and evaluate tools and training programs which could support the ethical questioning and decisions in these situations.

No relevant conflicts of interest to declare.