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.

     

Using a mobile health application to support self-management in COPD: a qualitative study

Background

Telehealth shows promise for supporting patients in managing their long-term health conditions, such as chronic obstructive pulmonary disease (COPD). However, it is currently unclear how patients, and particularly older people, may benefit from these technological interventions.

Aim

To explore patients’ expectations and experiences of using a mobile telehealth-based (mHealth) application and to determine how such a system may impact on their perceived wellbeing and ability to manage their COPD.

Design and setting

Embedded qualitative study using interviews with patients with COPD from various community NHS services: respiratory community nursing service, general practice, and pulmonary rehabilitation.

Method

An embedded qualitative study was conducted to which patients were recruited using purposive sampling to achieve maximum variation. Interviews were carried out prior to receiving the mHealth system and again after a 6-month period. Data were analysed using a grounded theory approach.

Results

The sample comprised 19 patients (aged 50–85 years) with varied levels of computer skills. Patients identified no difficulties in using the mHealth application. The main themes encapsulating patients’ experience of using the mHealth application related to an increased awareness of the variability of their symptoms (onset of exacerbation and recovery time) and reassurance through monitoring (continuity of care).

Conclusion

Patients were able to use the mHealth application, interpret clinical data, and use these within their self-management approach regardless of previous knowledge. Telehealth interventions can complement current clinical care pathways to support self-management behaviour.     

Surface and thermal properties of synthesized cationic poly(ethylene oxide) gemini surfactants: the role of the spacer

The solubility and heat stability of surfactants are the prerequisites for their oilfield applications. Most commercial surfactants undergo hydrolysis at high temperature and prolonged heating at 40 °C or above leads to decomposition. In this report, three cationic poly(ethylene oxide) gemini surfactants (GSs) containing flexible and rigid spacers were synthesized for oilfield applications. The chemical structures of the GSs were elucidated with the aid of ¹³C NMR, ¹H NMR, FT-IR, and MALDI-TOF MS. The GSs exhibit pronounced solubility in deionized water, seawater, and formation brine and no cloudiness, phase separation, or precipitation were detected after keeping GS solutions in an oven at 90 °C for three weeks. According to thermal gravimetric analysis, the degradation temperature of all the GSs was above 240 °C, which is higher than the existing oilfield temperature (≥90 °C). The critical micelle concentration (CMC) of the synthesized GSs decreases upon increasing the temperature. Additionally, CMC values were observed to increase even further with increasing salinity. The low CMC values of gemini surfactants containing a flexible structure indicate that they create a more closely packed micelle structure compared with gemini surfactants with a rigid structure. The distinct surface and thermal features of the synthesized GSs reveal them to be appropriate materials for high salinity and elevated temperature reservoirs.

Synthesis of new cationic poly(ethylene oxide) gemini surfactants containing flexible and rigid spacer groups to tolerate harsh reservoir condition.