No Easy Talk: A Mixed Methods Study of Doctor Reported Barriers to Conducting Effective End-of-Life Conversations with Diverse Patients

Objective

Though most patients wish to discuss end-of-life (EOL) issues, doctors are reluctant to conduct end-of-life conversations. Little is known about the barriers doctors face in conducting effective EOL conversations with diverse patients. This mixed methods study was undertaken to empirically identify barriers faced by doctors (if any) in conducting effective EOL conversations with diverse patients and to determine if the doctors’ age, gender, ethnicity and medical sub-specialty influenced the barriers reported.

Design

Mixed-methods study of multi-specialty doctors caring for diverse, seriously ill patients in two large academic medical centers at the end of the training; data were collected from 2010 to 2012.

Outcomes

Doctor-reported barriers to EOL conversations with diverse patients.

Results

1040 of 1234 potential subjects (84.3%) participated. 29 participants were designated as the development cohort for coding and grounded theory analyses to identify primary barriers. The codes were validated by analyses of responses from 50 randomly drawn subjects from the validation cohort (n= 996 doctors). Qualitative responses from the validation cohort were coded and analyzed using quantitative methods. Only 0.01 % doctors reported no barriers to conducting EOL conversations with patients. 99.99% doctors reported barriers with 85.7% finding it very challenging to conduct EOL conversations with all patients and especially so with patients whose ethnicity was different than their own. Asian-American doctors reported the most struggles (91.3%), followed by African Americans (85.3%), Caucasians (83.5%) and Hispanic Americans (79.3%) in conducting EOL conversations with their patients. The biggest doctor-reported barriers to effective EOL conversations are (i) language and medical interpretation issues, (ii) patient/family religio-spiritual beliefs about death and dying, (iii) doctors’ ignorance of patients’ cultural beliefs, values and practices, (iv) patient/family''s cultural differences in truth handling and decision making, (v) patients’ limited health literacy and (vi) patients’ mistrust of doctors and the health care system. The doctors'' ethnicity (Chi-Square = 12.77, DF = 4, p = 0.0125) and medical subspecialty (Chi-Square = 19.33, DF = 10, p =0.036) influenced their reported barriers. Friedman’s test used to examine participants relative ranking of the barriers across sub-groups identified significant differences by age group (F statistic = 303.5, DF = 5, p < 0.0001) and medical sub-specialty (F statistic =163.7, DF = 5, p < 0.0001).

Conclusions and Relevance

Doctors report struggles with conducting effective EOL conversations with all patients and especially with those whose ethnicity is different from their own. It is vital to identify strategies to mitigate barriers doctors encounter in conducting effective EOL conversations with seriously ill patients and their families.     

Measuring the Subjective Value of Risky and Ambiguous Options using Experimental Economics and Functional MRI Methods

Most of the choices we make have uncertain consequences. In some cases the probabilities for different possible outcomes are precisely known, a condition termed "risky". In other cases when probabilities cannot be estimated, this is a condition described as "ambiguous". While most people are averse to both risk and ambiguity^1,2, the degree of those aversions vary substantially across individuals, such that the subjective value of the same risky or ambiguous option can be very different for different individuals. We combine functional MRI (fMRI) with an experimental economics-based method³ to assess the neural representation of the subjective values of risky and ambiguous options⁴. This technique can be now used to study these neural representations in different populations, such as different age groups and different patient populations.In our experiment, subjects make consequential choices between two alternatives while their neural activation is tracked using fMRI. On each trial subjects choose between lotteries that vary in their monetary amount and in either the probability of winning that amount or the ambiguity level associated with winning. Our parametric design allows us to use each individual''s choice behavior to estimate their attitudes towards risk and ambiguity, and thus to estimate the subjective values that each option held for them. Another important feature of the design is that the outcome of the chosen lottery is not revealed during the experiment, so that no learning can take place, and thus the ambiguous options remain ambiguous and risk attitudes are stable. Instead, at the end of the scanning session one or few trials are randomly selected and played for real money. Since subjects do not know beforehand which trials will be selected, they must treat each and every trial as if it and it alone was the one trial on which they will be paid. This design ensures that we can estimate the true subjective value of each option to each subject. We then look for areas in the brain whose activation is correlated with the subjective value of risky options and for areas whose activation is correlated with the subjective value of ambiguous options.     

General practice orthopaedic outpatient referrals in North Staffordshire.

A study was made of 813 orthopaedic referrals by 134 general practitioners in North Staffordshire. The referral rates showed no relation to practice list size or the doctors'' previous orthopaedic experience. The published waiting times did not accurately reflect clinic vacancies, and no effective priority rating of letters by consultants was shown. Less than 1% of patients had an appointment within four weeks. One quarter of the patients failed to attend and, of those who did, 27% received physiotherapy or a "simple" appliance, or both, while 16% received treatment already available from their general practitioner. Patients from high referring doctors showed the same pattern of distribution in body area affected and treatment outcome as those from low referring doctors, but had a significantly longer time to wait for their appointment. A survey of non-attenders showed that 56% of the patients failed to attend because the condition had resolved.     

Assessing priorities for allocation of donor liver grafts: survey of public and clinicians

Objectives: To compare the priorities of the general public, family doctors, and gastroenterologists in allocating donor livers to potential recipients of liver allograft. Design: Representative quota sampling of 1000 members of the general public and 200 family doctors, and a postal questionnaire of 100 gastroenterologists. Subjects: Respondents were given eight hypothetical case histories (based on real patients) and asked to select recipients for four donor livers. Cases were selected to identify controversial areas such as extremes of age, misuse of alcohol, and intravenous drugs. Respondents were also asked to select the least deserving case and which of seven possible factors (time on waiting list, outcome, age, value to society, return to work, previous use of illicit drugs, and involvement of alcohol in the liver damage) should be used to select patients already listed for transplantation. Focus groups were also held to explore further the reasons for the choices given. Results: There were considerable differences between the three groups in the choice of the recipients, although alcohol use and antisocial behaviour always rated low. For selection of recipients the general public thought that, in decreasing order of importance, age, outcome, and time on the waiting list were the most important factors in selecting recipients; family doctors rated outcome, age, and likely work status after transplantation and the gastroenterologists outcome, work status, and non-involvement of alcohol in the cause of the liver disease as the most important factors. Conclusions: The views of the public are at variance with those of clinicians. Further debate is required to ensure an equitable and appropriate distribution of a scarce resource.

Key messages

• The shortage of donor livers means that rationing of the scarce resource is required
• The priorities of the public differ from those of the medical profession
• The public tend to prioritise on a more emotional basis and rank those with antisocial behaviour lowest
• There needs to be more discussion and agreement about the priorities for allocation of scarce resources

     

Behandeling van osteoporose bij ouderen: wat is de evidence?

Many older people, especially women, and their doctors still see osteoporosis as part of the natural course of ageing instead of as a preventable or treatable disorder. Height loss, hyperkyphosis, back pain, and fractures are accepted as consequences of ageing. The notion that it is too late to start treatment in a late stage of the disease forms another barrier to treatment. Although most studies of fracture reduction with medical treatment were not designed for the "geriatric" population, the average age of participants in most clinical trials was about 70 years. In all major studies patients also received calcium and vitamin D supplements. Nowadays, clinicians can choose from several effective treatments for the prevention of osteoporotic fractures in high-risk postmenopausal women. Data on the anti-fracture potential of calcium/vitamin D, raloxifene, bisphosphonates, strontium ralenate, and parathyroid hormone are now available. Bisphosphonates and strontium ralenate are good choices for first- or second-line treatment, while for the time being parathyroid hormone should only be used for the second-line treatment of osteoporosis in the elderly.     

"Post-residency disease" and the medical self: identity, work, and health care among doctors who become patients

Doctors who become patients due to serious illnesses face many challenges related to issues of identity, work, and professionalism. In-depth interviews with such doctors reveal the complex ways in which illness threatens identity in these professionals. In comparison with "medical student's disease," these doctors now exhibit "post-residency disease"-minimizing physical symptoms that are in fact present, leading to decreases in care sought. Doctors often feel they are somehow invulnerable to disease and have to remain strong, not burdening others. Many describe themselves as "workaholics," which can prove to be a double-edged sword, posing problems as well as providing benefits. This professional commitment could interfere with preventive health behaviors and with "practicing what they preach." Some view their illness with their "medical self" - as if they were a physician observing another patient rather than themselves. These doctors often support their approach by choosing a colleague as a doctor who will not challenge them, thereby establishing a "denial system" as opposed to a support system. These doctor-patients confront difficult issues of how much their physicianhood is an identity or an activity, illustrating the intricate relationships and tensions between work, identity, professionalism, and health in contemporary medicine.     

The Association of Types of Training and Practice Settings with Doctors’ Empathy and Patient Enablement among Patients with Chronic Illness in Hong Kong

Background

The increase in non-communicable disease (NCD) is becoming a global health problem and there is an increasing need for primary care doctors to look after these patients although whether family doctors are adequately trained and prepared is unknown.

Objective

This study aimed to determine if doctors with family medicine (FM) training are associated with enhanced empathy in consultation and enablement for patients with chronic illness as compared to doctors with internal medicine training or without any postgraduate training in different clinic settings.

Methods

This was a cross-sectional questionnaire survey using the validated Chinese version of the Consultation and Relational Empathy (CARE) Measure as well as Patient Enablement Instrument (PEI) for evaluation of quality and outcome of care. 14 doctors from hospital specialist clinics (7 with family medicine training, and 7 with internal medicine training) and 13 doctors from primary care clinics (7 with family medicine training, and 6 without specialist training) were recruited. In total, they consulted 823 patients with chronic illness. The CARE Measure and PEI scores were compared amongst doctors in these clinics with different training background: family medicine training, internal medicine training and those without specialist training. Generalized estimation equation (GEE) was used to account for cluster effects of patients nested with doctors.

Results

Within similar clinic settings, FM trained doctors had higher CARE score than doctors with no FM training. In hospital clinics, the difference of the mean CARE score for doctors who had family medicine training (39.2, SD = 7.04) and internal medicine training (35.5, SD = 8.92) was statistically significant after adjusting for consultation time and gender of the patient. In the community care clinics, the mean CARE score for doctors with family medicine training and those without specialist training were 32.1 (SD = 7.95) and 29.2 (SD = 7.43) respectively, but the difference was not found to be significant. For PEI, patients receiving care from doctors in the hospital clinics scored significantly higher than those in the community clinics, but there was no significant difference in PEI between patients receiving care from doctors with different training backgrounds within similar clinic setting.

Conclusion

Family medicine training was associated with higher patient perceived empathy for chronic illness patients in the hospital clinics. Patient enablement appeared to be associated with clinic settings but not doctors’ training background. Training in family medicine and a clinic environment that enables more patient doctor time might help in enhancing doctors’ empathy and enablement for chronic illness patients.     

Medicine and place: an inquiry

This essay explores the various places inhabited by doctors and patients, in order to lead doctors to a more complex understanding of their patients' experiences of illness. Using Adam Haslett's "The Good Doctor" (2002), we examine what happens when doctors enter the worlds of their patients, both the literal landscapes of their patients' homes and the hidden landscapes of their minds. We illustrate the impact place has on doctors' understanding of their patients and on the patients' attitudes toward their illness. In addition, we examine how place informs readers' perceptions of both the coherence and the divide between the worlds of doctor and patient.     

Why do we treat adolescent idiopathic scoliosis? What we want to obtain and to avoid for our patients. SOSORT 2005 Consensus paper

Background

Medicine is a scientific art: once science is not clear, choices are made according to individual and collective beliefs that should be better understood. This is particularly true in a field like adolescent idiopathic scoliosis, where currently does not exist definitive scientific evidence on the efficacy either of conservative or of surgical treatments.

Aim of the study

To verify the philosophical choices on the final outcome of a group of people believing and engaged in a conservative treatment of idiopathic scoliosis.

Methods

We performed a multifaceted study that included a bibliometric analysis, a questionnaire, and a careful Consensus reaching procedure between experts in the conservative treatment of scoliosis (SOSORT members).

Results

The Consensus reaching procedure has shown to be useful: answers changed in a statistically significant way, and 9 new outcome criteria were included. The most important final outcomes were considered Aesthetics (100%), Quality of life and Disability (more than 90%), while more than 80% of preferences went to Back Pain, Psychological well-being, Progression in adulthood, Breathing function, Scoliosis Cobb degrees (radiographic lateral flexion), Needs of further treatments in adulthood.

Discussion

In the literature prevail outcome criteria driven by the contingent treatment needs or the possibility to have measurement systems (even if it seems that usual clinical and radiographic methods are given much more importance than more complex Disability or Quality of Life instruments). SOSORT members give importance to a wide range of outcome criteria, in which clinical and radiographic issues have the lowest importance.

Conclusion

We treat our patients for what they need for their future (Breathing function, Needs of further treatments in adulthood, Progression in adulthood), and their present too (Aesthetics, Disability, Quality of life). Technical matters, such as rib hump or radiographic lateral alignment and rotation, but not lateral flexion, are secondary outcomes and only instrumental to previously reported primary outcomes. We advocate a multidimensional, comprehensive evaluation of scoliosis patients, to gather all necessary data for a complete therapeutic approach, that goes beyond x-rays to reach the person and the family.     

When (if ever) may doctors discuss religion with their patients?

There is ongoing debate within the bioethics literature regarding to what extent (if any) it is ethically justifiable for doctors to engage in religious discussion with their patients, in cases where patients cite religious considerations as influencing their medical decision-making. In this paper, we concede that certain forms of religious discussion between doctors and patients are morally permissible (though not necessarily morally obligatory), insofar as patients’ religious beliefs may comprise an important part of their overall wellbeing and can influence their medical decisions. However, we argue that it is not morally permissible for doctors to engage in substantive religious discussion with their patients, beyond simply inquiring about the patient's values (which may include their religious values) or referring patients to a chaplain or religious figure for further discussion. In support of this claim, we put forward two key arguments which have remained relatively unaddressed in the current debate. First, we argue that it is not practical for doctors to engage in substantive religious discussion with patients, and hence it cannot be morally obligatory for them to do so. Second, we argue that, while doctors might have a professional duty to ensure that their patient's religious interests (if any) are addressed, this does not entail that doctors themselves are the ones who should directly address these interests. Along the way, we anticipate and respond to some possible objections to these two key arguments.     

患者的道德权利在医患纠纷中的重要性

近年来医患冲突不断发生,一系列由伦理道德而引发的医疗纠纷事件反映了我国医院管理存在的问题。患者及家属的观念偏移、医患双方信息不对等、医务人员态度不佳以及医疗资源分配不均等问题均是医患冲突的影响因素。我们通过分析患者的道德权利在医患关系中重要地位,认为医务人员应当树立"以人为本"的服务理念,重视患者及家属的社会心理需求,促进医学道德的发展,构建和谐的医患关系。     

Psychological and social evaluation in cases of deliberate self-poisoning admitted to a general hospital.

In a prospective clinical trial 312 cases of self-poisoning (276 patients) consecutively admitted to hospital were randomly allocated to medical teams or to psychiatrists for an initial psychiatric assessment and a decision as to "disposal." Junior doctors and nurses received some instruction in this work. Both groups of assessors asked for help from social workers when necessary. Once the medical teams had completed their assessments, psychiatrists provided most of the hospital treatment. Follow-up at one year showed no significant difference between the two groups of patients in the numbers who repeated their self-poisoning or self-injury (or both), or committed suicide. Provided junior doctors and nurses are taught to assess self-poisoned patients, we think medical teams can evaluate the suicidal risk and identify patients requiring psychiatric treatment or help from social workers, or both. Contrary to the Department of Health''s recommendation that all cases of deliberate self-poisoning should be seen by psychiatrists, we have reached the conclusion that physicians should decide for each of their patients if specialist psychiatric advice is necessary.     

Refugees' perspectives on barriers to communication about trauma histories in primary care

Objective This study explores refugees'' perspectives regarding the nature of communication barriers that impede the exploration of trauma histories in primary care.Method Brief interviews were conducted with 53 refugee patients in a suburban primary care clinic in the Midwest USA. Participants were asked if they or their doctors had initiated conversations about the impact of political conflict in their home countries. Qualitative data analysis was guided by grounded theory. Peer debriefings of refugee healthcare professionals were incorporated into the analysis.Results Two-thirds of refugee patients reported that they never shared how they were affected by political conflict with their doctors and that their doctors never asked them about it. Most refugees stated that they would like to learn more about the impact of trauma on their health and to discuss their experiences with their doctors.Conclusion Refugees are hesitant to initiate conversations with physicians due to cultural norms requiring deference to the doctor''s authority. They also lack knowledge about how trauma affects health. Physicians should be educated to inquire directly about trauma histories with refugee patients. Refugees can benefit from education about the effects of trauma on health and about the collaborative nature of the doctor–patient relationship.     

Effectiveness of teaching general practitioners skills in brief cognitive behaviour therapy to treat patients with depression: randomised controlled trial

ObjectiveTo assess the effectiveness of teaching general practitioners skills in brief cognitive behaviour therapy.DesignParallel group, cluster randomised, controlled trial of an educational package on cognitive behaviour therapy.SettingGeneral practices in north London.Participants84 general practitioner principals and 272 patients attending their practices who scored above the threshold for psychological distress on the hospital anxiety and depression scale.InterventionA training package of four half days on brief cognitive behaviour therapy.ResultsDoctors'' knowledge of depression and attitudes towards its treatment showed no major difference between intervention and control groups after 6 months. The training had no discernible impact on patients'' outcomes.ConclusionGeneral practitioners may require more training and support than a basic educational package on brief cognitive behaviour therapy to acquire skills to help patients with depression.

What is already known on this topic

Trained professionals can deliver effective cognitive behaviour therapy to depressed patients presenting to general practitionersLimited evidence shows that cognitive behaviour therapy is effective when delivered by general practitioners who have received extensive instructionMost doctors do not have the time or inclination to carry out such comprehensive training

What this study adds

Basic training in brief cognitive behaviour therapy has little effect on general practitioners'' attitudes to the identification and treatment of depression or the outcome of their patients with emotional problemsGeneral practitioners may require more extensive training and support if they are to acquire skills in brief cognitive behaviour therapy that will have a positive impact on their patients     

Searching for convergence in phylogenetic Markov chain Monte Carlo

Markov chain Monte Carlo (MCMC) is a methodology that is gaining widespread use in the phylogenetics community and is central to phylogenetic software packages such as MrBayes. An important issue for users of MCMC methods is how to select appropriate values for adjustable parameters such as the length of the Markov chain or chains, the sampling density, the proposal mechanism, and, if Metropolis-coupled MCMC is being used, the number of heated chains and their temperatures. Although some parameter settings have been examined in detail in the literature, others are frequently chosen with more regard to computational time or personal experience with other data sets. Such choices may lead to inadequate sampling of tree space or an inefficient use of computational resources. We performed a detailed study of convergence and mixing for 70 randomly selected, putatively orthologous protein sets with different sizes and taxonomic compositions. Replicated runs from multiple random starting points permit a more rigorous assessment of convergence, and we developed two novel statistics, delta and epsilon, for this purpose. Although likelihood values invariably stabilized quickly, adequate sampling of the posterior distribution of tree topologies took considerably longer. Our results suggest that multimodality is common for data sets with 30 or more taxa and that this results in slow convergence and mixing. However, we also found that the pragmatic approach of combining data from several short, replicated runs into a "metachain" to estimate bipartition posterior probabilities provided good approximations, and that such estimates were no worse in approximating a reference posterior distribution than those obtained using a single long run of the same length as the metachain. Precision appears to be best when heated Markov chains have low temperatures, whereas chains with high temperatures appear to sample trees with high posterior probabilities only rarely.     

Rules of thumb for conservation of metapopulations based on a stochastic winking-patch model

From a theoretical viewpoint, nature management basically has two options to prolong metapopulation persistence: decreasing local extinction probabilities and increasing colonization probabilities. This article focuses on those options with a stochastic, single-species metapopulation model. We found that for most combinations of local extinction probabilities and colonization probabilities, decreasing the former increases metapopulation extinction time more than does increasing the latter by the same amount. Only for relatively low colonization probabilities is an effort to increase these probabilities more beneficial, but even then, decreasing extinction probabilities does not seem much less effective. Furthermore, we found the following rules of thumb. First, if one focuses on extinction, one should preferably decrease the lowest local extinction probability. Only if the extinction probabilities are (almost) equal should one prioritize decreases in the local extinction probability of the patch with the best direct connections to and from other patches. Second, if one focuses on colonization, one should preferably increase the colonization probability between the patches with the lowest local extinction probability. Only if the local extinction probabilities are (almost) equal should one instead prioritize increases in the highest colonization probability (unless extinction probabilities and colonization probabilities are very low). The rules of thumb have an important common denominator: the local extinction process has a greater bearing on metapopulation extinction time than colonization.     

The treatment of bone metastases with bisphosphonates--the patients' view

The Hungarian bisphosphonate market has been increasing for years; last year the number of patients was approximately 3200-3500. We decided to start a research among patients having malignant disease with bone metastases, in order to find out how patients evaluate the drugs, how they are informed and what is the role of doctors and nurses in compliance. Nearly 300 patients filled questionnaires and we have made 16 in-depth interviews. The average age of patients was 57 years. More than 60% of patients were younger than 60 and the male-female ratio was 1:2. We found that more than one quarter of the patients arrived to their doctor from farther than 50 km and 70% of them meet their doctor at least once a month. The results showed that 95% of patients would prefer oral treatment (tablets or capsules), and 75% of the patients would choose tablets, if they were asked. Most of the patients wanted to be informed primarily by doctors. Nurses were the hostesses of emotional problems. Doctor-patient relationship was characterised by paternalism. Female patients were more open to nurses, they talked over smaller problems emerging during the treatment and the same occurred with some male patients, too. Only 5% of patients received the treatment of their choice. Patients want to be involved more actively in the planning of their treatment process than doctors think, they expect that doctors should prefer their interest. Cancer patients are frequently underinformed and they expect more help to solve their psychological problems.     

Consultation-liaison scheme for self-poisoned patients in a general hospital.

In a prospective clinical trial 276 self-poisoned patients consecutively admitted to hospital were randomly allocated to medical teams or to psychiatrists for an initial psychiatric assessment and a decision about "disposal." Junior doctors and nurses received instruction in this work. While awaiting the outcome of the trial the randomisation was continued for 13 months and 729 allocations were made altogether. Physicians requested psychiatric opinions for roughly one in five of their patients. In other respects medical teams performed similarly to psychiatrists. Provided that due attention is given to teaching junior staff and to ensuring that psychiatric treatment and social-work support are available once patients have been assessed, such a consultation-liaison scheme could be adopted in other hospitals. This would help to change unfavourable attitudes towards self-poisoned patients and contribute to the general training of doctors and nurses.     

How Much Demand for New HIV Prevention Technologies Can We Really Expect? Results from a Discrete Choice Experiment in South Africa

Background

For the first time in the history of HIV, new bio-medical interventions have been shown to be effective in preventing HIV transmission. For these new HIV prevention technologies (NPTs) to have an impact on the epidemic, they must be widely used. This study uses a discrete choice experiment (DCE) to: understand the relative strength of women’s preferences for product characteristics, understand the implications for substitution away from male condoms, and inform realistic modelling of their potential impact and cost-effectiveness.

Methods

A DCE was conducted among 1017 women in urban South Africa. Women were presented with choices between potential women’s NPTs (microbicides, diaphragm, female condom) and ‘what I did last time’ (use or not use a condom) with different HIV and pregnancy prevention effectiveness’ and prices. Choice probabilities are estimated using the nested logit model and used to predict uptake.

Results

In this high HIV prevalence setting, HIV prevention effectiveness is the main driver of uptake followed by pregnancy prevention effectiveness. For example a microbicide with poor effectiveness would have niche appeal at just 11% predicted uptake, while a highly effective microbicide (95% effective against HIV and pregnancy) would have far wider appeal (56% predicted uptake). Though women who reported not using condoms were more likely to choose the NPTs, at current very high rates of male condom use in South Africa (60%), about half of microbicide uptake is projected to be among those currently not using condoms.

Conclusions

Women are very interested in NPTs, especially if highly effective in preventing HIV and pregnancy. Women in greatest need were also most likely to switch to the new products. Where products are not yet available for distribution, proxy data, such as that generated by DCEs, can bring realism to overly optimistic uptake scenarios found in many current impact models.