Is shared decision-making vanishing at the end-of-life? A descriptive and qualitative study of advanced cancer patients’ involvement in specific therapies decision-making

Background

Little is known about what is at stake at a subjective level for the oncologists and the advanced cancer patients when they face the question whether to continue, limit or stop specific therapies. We studied (1) the frequency of such questioning, and (2) subjective determinants of the decision-making process from the physicians’ and the patients’ perspectives.

Methods

(1) All hospitalized patients were screened during 1 week in oncology and/or hematology units of five institutions. We included those with advanced cancer for whom a questioning about the pursuit, the limitation or the withholding of specific therapies (QST) was raised. (2) Qualitative design was based on in-depth interviews.

Results

In conventional units, 12.8 % of cancer patients (26 out of 202) were concerned by a QST during the study period. Interviews were conducted with all physicians and 21 advanced cancer patients. The timing of this questioning occurred most frequently as physicians estimated life expectancy between 15 days and 3 months. Faced with the most frequent dilemma (uncertain risk-benefit balance), physicians showed different ways of involving patients. The first two were called the “no choice” models: 1) trying to resolve the dilemma via a technical answer or a “wait-and-see” posture, instead of involving the patients in the questioning and the thinking; and 2), giving a “last minute” choice to the patients, leaving to them the responsibility of the decision. In a third model, they engaged early in shared reflections and dialogue about uncertainties and limits with patients, proxies and care teams. These schematic trends influenced patients’ attitudes towards uncertainty and limits, as they were influenced by these ones. Individual and systemic barriers to a shared questioning were pointed out by physicians and patients.

Conclusions

This study indicate to what extent these difficult decisions are related to physicians’ and patients’ respective and mutually influenced abilities to deal with and share about uncertainties and limits, throughout the disease trajectory. These insights may help physicians, patients and policy makers to enrich their understanding of underestimated and sensitive key issues of the decision-making process.

     

Pharmacists’ responses to cues and concerns of polypharmacy patients during clinical medication reviews—A video observation study

ObjectiveThe research questions of this study are 1) How do pharmacists respond to negative emotions of patients during a clinical medication review (CMR)? 2) How do patients express negative emotions during a CMR? 3) Who (pharmacist or patient) initiates a negative emotion to be discussed during a CMR?MethodsWe used video-recordings to observe 132 CMR interviews of 49 pharmacists. Videos were coded with the Verona coding definitions on emotional sequences(-provider responses) (VR-CoDES(-P)).ResultsIn total 2538 negative emotions were identified, mainly expressed as cues (95.0 %). Often cues were expressed as verbal hints to hidden concerns (33.2 %) or were related to cognitive or physical causes (28.3 %).Three-quarters of the negative emotions were elicited by patients. 2670 pharmacists’ responses were coded. The most common response was non-explicit providing space (77.6 %) and the least common response was explicit reducing space (5.8 %).ConclusionPharmacists are mainly non-explicitly providing space in their responses. While this hinders their ability to capture patients’ problems it also may enable patients to initiate topics.Practice implications: Pharmacists are able to respond to patients’ negative emotions. Training should focus on developing pharmacist’s skills to be more explicit in their responses to get more in-depth knowledge of patients’ problems.     

Patients’ preferred and perceived decision-making roles,and observed patient involvement in videotaped encounters with medical specialists

ObjectiveTo assess how patients prefer and perceive medical decision making, which factors are associated with their preferred and perceived decision-making roles, and whether observed involvement reflects patients’ perceived role.MethodsWe asked 781 patients visiting a medical specialist from 18 different disciplines to indicate their preferred and perceived decision-making roles. Patient involvement in videotaped consultations was assessed with the OPTION5 instrument.ResultsMost patients preferred and perceived decision making as shared (SDM; 58% and 43%, respectively), followed by paternalistic (26% and 38%), and informative (16% and 15%). A large minority (n = 103, 21%) of patients preferring shared or informative decision making (n = 482) experienced paternalistic decision making. Mean (SD) OPTION5 scores were highest in consultations which patients perceived as informative (26.0 (19.7)), followed by shared (19.1 (17.2)) and lowest in paternalistic decision making (11.8 (13.4) p < 0.001).ConclusionsMost patients want to be involved in decision making. Patients perceive that the physician makes the decision more often than they prefer, and perceive more involvement in the decision than objective assessment by an independent researcher shows.Practice implicationsA clearer understanding of patients’ medical decision-making experiences is needed to optimize physician SDM training programmes and patient awareness campaigns.     

Is the communicative behavior of GPs during the consultation related to the diagnosis? A cross-sectional study in six European countries

This study explores the relation between the diagnosis made by the general practitioner (GP) and his or her communicative behavior within a consultation, by means of the analysis of 2095 videotaped consultations of 168 GPs from six countries participating in the Eurocommunication study. The doctors' diagnoses were coded into ICPC chapters and merged into seven clinically relevant diagnostic clusters. The communicative behavior was gauged by means of the Roter interaction analysis system (RIAS). We found the most important differences for consultations about psychosocial problems as compared to all other diagnostic categories. In these consultations, doctors show more affective behavior, are more concerned about having a good relationship with their patients, ask more questions and give less information than in other consultations. The percentages of utterances in the other diagnostic categories were pretty similar. The communicative behavior of doctors reflects a global pattern in every consultation. This pattern is the most stable for affective behavior (social talk, agreement, rapport building and facilitation). Within instrumental behavior (the other categories), the directions and the information the doctor gives are adapted to the problems presented.     

Shared decision-making in older patients with colorectal or pancreatic cancer: Determinants of patients’ and observers’ perceptions

Objective

To identify determinants of older patients’ perceptions of involvement in decision-making on colorectal (CRC) or pancreatic cancer (PC) treatment, and to compare these with determinants of observers' perceptions.

The mediating role of decision-making conflict in the association between patient’s participation satisfaction and distress during medical decision-making among Chinese patients with pulmonary nodules

ObjectiveWhen diagnosed as having pulmonary nodules, patients may be mired in the conflict of medical decision-making and suffered from distress. The purpose of this study was to investigate the mediating role of decision-making conflict in the relationship between participation satisfaction in medical decision-making (PSMD) and distress among Chinese patients with incidental pulmonary nodules.MethodsA total of 163 outpatients with incidental pulmonary nodules detected in a tertiary hospital were recruited and investigated by Impact of Event Scale (IES), Decision Conflict Scale (DCS), participation satisfaction in medical decision-making Scale (PSMDS), and demographic questionnaire.ResultsThe mean IES score was 37.35 ± 16.65, representing a moderate level. PSMD was negatively associated with distress, while decision-making conflict was positively associated with distress. The final regression model contained three factors: having a first-degree relative diagnosed with lung cancer, worrying about getting lung cancer someday, and decision-making conflict. These three factors explained 49.4 % of the variance of distress. The total effect of PSMD on distress and indirect effect of SPMD on distress caused-by decision-making conflict were significant (P < 0.05). However, the direct effect of PSMD on distress was not significant.ConclusionsParticipation of patients in medical decision-making can lower their distress by reducing patient's decision-making conflict.Practice implicationsInterventions targeting at the decision-making conflict will help alleviate the distress level of patients with pulmonary nodules.Data availabilityThe data that support the findings of this study are available on request from the corresponding author.     

Are person-related and socio-structural factors associated with nurses’ self-management support behavior? A correlational study

Objective

To explore nurses’ self-perceived behavior of supporting patients’ self-management, and its association with person-related and socio-structural factors.

Opportunities and limitations of shared decision making in multidisciplinary tumor conferences with patient participation – A qualitative interview study with providers

ObjectiveThe aim of this study was to examine opportunities and limitations of shared decision making in multidisciplinary tumor conferences with patient participation from the providers’ perspective in breast and gynecological cancer centers.MethodsSemi-structured guideline-based expert interviews were conducted with providers from breast and gynecological cancer centers with and without patient participation in multidisciplinary tumor conferences. Interviews were transcribed, anonymized and analyzed using qualitative content analysis.ResultsThe providers (n = 30) reported that some process steps of shared decision making can be implemented in limited form and under certain conditions in multidisciplinary tumor conferences with patient participation. Above all, patients can potentially ask questions and contribute individual additional information and their preferences.ConclusionThis study contributes first insights into the implementation of shared decision making in multidisciplinary tumor conferences with patient participation. From the providers’ perspective, the implementation of shared decision making seems difficult under the current circumstances. Further studies, using patient experiences, participative observations or interventional designs, are required.Practice ImplicationsDespite the limited implementation of shared decision making in tumor conferences, patient participation can be advantageous as it can allow patients to ask questions and contribute individual additional information as well as their preferences.     

Living with AIDS in Uganda: a qualitative study of patients’ and families’ experiences following referral to hospice

Background

Globally, the majority of people with HIV/AIDS live in sub-Saharan Africa. While the increasing availability of antiretroviral therapy is improving the outlook for many, its effects are yet to reach all of those in need and patients still present with advanced disease. This paper reports findings from qualitative interviews with patients living with AIDS and their caregivers who were receiving palliative care from Hospice Africa Uganda (HAU). We aimed to understand what motivated patients and their families to seek formal healthcare, whether there were any barriers to help- seeking and how the help and support provided to them by HAU was perceived.

Methods

We invited patients with AIDS and their relatives who were newly referred to HAU to participate in qualitative interviews. Patients and carers were interviewed in their homes approximately four weeks after the patient’s enrolment at HAU. Interviews were translated, transcribed and analysed using narrative and thematic approaches.

Results

Interviews were completed with 22 patients (10 women and 12 men) and 20 family caregivers, nominated by patients. Interviews revealed the extent of suffering patients endured and the strain that family caregivers experienced before help was sought or accessed. Patients reported a wide range of severe physical symptoms. Patients and their relatives reported worries about the disclosure of the AIDS diagnosis and fear of stigma. Profound poverty framed all accounts. Poverty and stigma were, depending on the patient and family situation, both motivators and barriers to help seeking behaviour. Hospice services were perceived to provide essential relief of pain and symptoms, as well as providing rehabilitative support and a sense of caring. The hospice was perceived relieve utter destitution, although it was unable to meet all the expectations that patients had.

Conclusion

Hospice care was highly valued and perceived to effectively manage problems such as pain and other symptoms and to provide rehabilitation. Participants noted a strong sense of being “cared for”. However, poverty and a sense of stigma were widespread. Further research is needed to understand how poverty and stigma can be effectively managed in hospice care for patients for advanced AIDS and their families.

     

Exploring the development of sun-tanning behavior: A grounded theory study of adolescents’ decision-making experiences with becoming a sun tanner

A grounded theory study was undertaken to describe how adolescents make decisions about sunbathing during the transition from childhood to adolescence and to propose an explanation for the relationships among factors affecting the adoption of sun tanning. In-depth interviews (n = 40) were conducted separately with adolescents (aged 12 to 16 years) and their parents. Constant comparative analysis of adolescents’ accounts identified two methods that adolescents described as a means of getting a suntan: intentional sun tanning and incidental sun tanning. The process of adolescents’ decision-making about getting a suntan can be understood by examining the following sequence: becoming motivated to get a tan, experimenting with sun tanning, and establishing self as an intentional tanner or incidental tanner. Implications for developing strategies to prevent the adoption of sun-tanning habits among adolescents are presented.     

Exploring cancer patients’, caregivers’, and clinicians’ utilisation and experiences of telehealth services during COVID-19: A qualitative study

ObjectivesThe COVID-19 pandemic has significantly impacted oncology. With pandemic restrictions limiting close contact between individuals, telehealth (the use of teleconferencing/videoconferencing to conduct real-time medical consultations) has been increasingly utilised. This qualitative study aimed to explore adult cancer patient, caregiver, and clinician (doctor, nurse, allied health) telehealth experiences during COVID-19 in urban and rural Australian settings and identify potential enablers and barriers to sustained telehealth implementation.MethodsEnglish-speaking participants completed semi-structured interviews regarding their telehealth experiences since March 2020. Interviews ceased when data saturation occurred. Iterative thematic analysis was conducted using NVivo 12 Pro.ResultsThirty-four interviews (clinician=14, patient=13, caregiver=7) were conducted from April to August 2021. Analysis generated seven themes relating to telehealth use: 1) Acceptability as a form of consultation, 2) Impacts on healthcare provision, 3) Communication & relationships, 4) Efficient form of consultation, 5) Comfort of conducting telehealth in different environments, 6) Technological barriers and 7) Future preferences.ConclusionsThe rapid uptake of telehealth during the pandemic has mostly been well-received, and telehealth can be appropriately used in oncology.Practice implicationsBarriers including providing appropriate facilities, technology, and telehealth training; and selecting appropriate patients must be addressed to enable sustained telehealth use in future cancer care.     

Barriers and facilitators to implementing shared decision-making in clinical practice: Update of a systematic review of health professionals’ perceptions

ObjectiveTo update a systematic review on the barriers and facilitators to implementing shared decision-making in clinical practice as perceived by health professionals.MethodsFrom March to December 2006, PubMed, Embase, CINHAL, PsycINFO, and Dissertation Abstracts were searched. Studies were included if they reported on health professionals’ perceived barriers and facilitators to implementing shared decision-making in practice. Quality of the included studies was assessed. Content analysis was performed with a pre-established taxonomy.ResultsOut of 1130 titles, 10 new eligible studies were identified for a total of 38 included studies compared to 28 in the previous version. The vast majority of participants (n = 3231) were physicians (89%). The three most often reported barriers were: time constraints (22/38) and lack of applicability due to patient characteristics (18/38) and the clinical situation (16/38). The three most often reported facilitators were: provider motivation (23/38) and positive impact on the clinical process (16/38) and patient outcomes (16/38).ConclusionThis systematic review update confirms the results of the original review.Practice implicationsInterventions to foster implementation of shared decision-making in clinical practice will need to address a range of factors.     

Strategies to implement a patient counseling and medication tickler system — A study of Maryland pharmacists and their hypertensive patients

The Maryland Pharmacy High Blood Pressure Program (MPHBPP) successfully enrolled over 100 pharmacies (approximately 200 pharmacists) in a program to educate, monitor and follow-up hypertensive patients to improve patient compliance with therapy regimen. Utilizing diffusion of innovation as a theoretical framework, strategies were developed to identify pharmacists willing to consider participation and implement a patient counseling and medication tickler system. Pharmacists who maintained patient profiles, had a private consultation area, provided verbal instruction and were members of one or more professional societies were over represented among the adopters and correlation (0.48, P = 0.00) and regression (r² = 0.18) analyses of these prior behaviors indicate that they were the best predictors of adopting the program. We conclude that added practice changes can be achieved if programs are tailored to be compatible with the practices of those who have already demonstrated the interest and capacity to change.