Patients' Preferences for Participation in Treatment Decision-Making at the End of Life: Qualitative Interviews with Advanced Cancer Patients

Abstract

PurposePatients are often encouraged to participate in treatment decision-making. Most studies on this subject focus on choosing between different curative treatment types. In the last phase of life treatment decisions differ as they often put more emphasis on weighing quantity against quality of life, such as whether or not to start treatment aimed at life prolongation but with the possibility of side effects. This study aimed to obtain insight into cancer patients' preferences and the reasons for patients' preferred role in treatment decision-making at the end of life.Methods28 advanced cancer patients were included at the start of their first line treatment. In-depth interviews were held prior to upcoming treatment decisions whether or not to start a life prolonging treatment. The Control Preference Scale was used to start discussing the extent and type of influence patients wanted to have concerning upcoming treatment decision-making. Interviews were audio taped and transcribed.ResultsAll patients wanted their physician to participate in the treatment decision-making process. The extent to which patients themselves preferred to participate seemed to depend on how patients saw their own role or assessed their own capabilities for participating in treatment decision-making. Patients foresaw a shift in the preferred level of participation to a more active role depending in the later phase of illness when life prolongation would become more limited and quality of life would become more important.ConclusionPatients vary in how much involvement they would like to have in upcoming treatment decision-making. Individual patients' preferences may change in the course of the illness, with a shift to more active participation in the later phases. Communication about patients' expectations, wishes and preferences for participation in upcoming treatment decisions is of great importance. An approach in which these topics are openly discussed would be beneficial.

Patients' Preferences in Non-Curable Cancer Disease

“…With progression of the disease and transition to a focus on palliative care, oncologists should elicit once more what decisional model patient prefers and tailor their communication style accordingly [16] .…”

“…It has also been demonstrated that patients' preferences can change with disease progression towards a more active participation in the later phases [16,17] . A qualitative interview study with 28 advanced cancer patients showed that, in palliative care, patients prefer their oncologists to have a shared role in decision-making.…”

“…A qualitative interview study with 28 advanced cancer patients showed that, in palliative care, patients prefer their oncologists to have a shared role in decision-making. However, patients admitted that they possibly would change a preferred level of participation to a more active role near the end of life, when quality of life would be given more priority [16] .…”

“…A more passive decisional model was significantly associated with the following country of origin: Brazil, Singapore, South Africa and Jordan [11] . However, despite cultural differences, in general the majority of patients want to have some degree of involvement in treatment decisions and want to discuss the strategy of cancer-specific treatment and switching to symptom control with their oncologists, and feel frustrated when such discussions do not happen in a timely manner [10,[15][16][17][18][19][20][21][22][23] . A literature review found that between 65% and 87% of patients prefer to participate in treatment decisions in palliative care.…”

Shared decision-making in rheumatology : what matters to patients?

“…For future research, we therefore recommend a quantitative and longitudinal study to show how patients' preferences regarding participation in rheumatology/chronic care may change over time. Changing preferences with regard to patient participation have been studied previously in end-of-life decisions (198,199), but according to our knowledge this has not been studied in chronic care where patients establish a long term relationship with their health care professionals.…”