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.     

Patients' assessment of out of hours care in general practice

A sample of 177 patients drawn from 13 north London practices were interviewed shortly after they had sought help from their practice outside normal surgery hours. Patients were asked to describe the process and outcome of their out of hours call, to comment on specific aspects of the consultation, and to access their overall satisfaction with the encounter.Parents seeking consultations for children were least satisfied with the consultation; those aged over 60 responded most positively. Visits from general practitioners were more acceptable than visits from deputising doctors for patients aged under 60, but for patients aged over 60 visits from general practitioners and deputising doctors were equally acceptable.Monitoring of patients'' views of out of hours consultations is feasible, and the findings of this study suggest that practices should regularly review the organisation of their out of hours care and discuss strategies for minimising conflict in out of hours calls—particularly those concerning children.     

White doctors and nurses on racial inequality in health care in the USA: whiteness and colour-blind racial ideology

In this paper we report on an interdisciplinary project interviewing doctors and nurses about racial inequality in health care in the USA. We analysed data from interviews with twenty-two white doctors and nurses in which they were asked to offer explanations for racial inequality in health care. Results provide insight into how whiteness operates to provide white patients more often with appropriate health care and how colour-blind ideology can be adapted to accommodate naming white advantage and potential racial discrimination. However, even when naming mechanisms of white advantage in accessing resources, the white respondents avoided acknowledging how they are implicated in racial inequality in health care. We discuss the implications for understanding whiteness and colour-blind ideology.     

When "humanitarianism" becomes "development": the politics of international aid in Syria's Palestinian refugee camps

In recent years, the United Nations Relief and Works Agency for Palestine Refugees in the Near East (UNRWA) has attempted to go beyond its role as a provider of relief and basic services in Palestinian refugee camps and emphasize its role as a development agency. In this article, I focus on the Neirab Rehabilitation Project, an UNRWA-sponsored development project taking place in the Palestinian refugee camps of Ein el Tal and Neirab in northern Syria. I argue that UNRWA's role as a relief-centered humanitarian organization highlights the everyday suffering of Palestinian refugees, suffering that has become embedded in refugees’ political claims. I show that UNRWA's emphasis on “development” in the refugee camps is forcing Palestinian refugees in Ein el Tal and Neirab to reassess the political narrative through which they have understood their relationship with UNRWA.     

'I Used to Fight with Them but Now I Have Stopped!': Conflict and Doctor-Nurse-Anaesthetists' Motivation in Maternal and Neonatal Care Provision in a Specialist Referral Hospital

Background and Objectives

This paper analyses why and how conflicts occur and their influence on doctors and nurse-anaesthetists'' motivation in the provision of maternal and neonatal health care in a specialist hospital.

Methodology

The study used ethnographic methods including participant observation, conversation and in-depth interviews over eleven months in a specialist referral hospital in Ghana. Qualitative analysis software Nvivo 8 was used for coding and analysis of data. Main themes identified in the analysis form the basis for interpreting and reporting study findings.

Ethics Statement

Ethical clearance was obtained from the Ghana Health Service Ethics Review board (approval number GHS-ERC:06/01/12) and from the University of Wageningen. Written consent was obtained from interview participants, while verbal consent was obtained for conversations. To protect the identity of the hospital and research participants pseudonyms are used in the article and the part of Ghana in which the study was conducted is not mentioned.

Results

Individual characteristics, interpersonal and organisational factors contributed to conflicts. Unequal power relations and distrust relations among doctors and nurse-anaesthetists affected how they responded to conflicts. Responses to conflicts including forcing, avoiding, accommodating and compromising contributed to persistent conflicts, which frustrated and demotivated doctors and nurse-anaesthetists. Demotivated workers exhibited poor attitudes in collaborating with co-workers in the provision of maternal and neonatal care, which sometimes led to poor health worker response to client care, consequently compromising the hospital''s goal of providing quality health care to clients.

Conclusion

To improve health care delivery in health facilities in Ghana, health managers and supervisors need to identify conflicts as an important phenomenon that should be addressed whenever they occur. Effective mechanisms including training managers and health workers on conflict management should be put in place. Additionally promoting communication and interaction among health workers can foster team spirit. Also resolving conflicts using the collaborating response may help to create a conducive work environment that will promote healthy work relations, which can facilitate the delivery of quality maternal and neonatal health care. However, such an approach requires that unequal power relations, which is a root cause of the conflicts is addressed.     

Comparison of criteria derived by government and patients for evaluating general practitioner services.

A study was carried out to see whether patients'' criteria of good health care in general practice were different from those of the government and doctors. A total of 711 patients in a semirural group practice evaluated the importance of 20 criteria describing different facets of care. Half the criteria were derived from Promoting Better Health (health education, easy to change doctors, all children vaccinated, health checks for adults and children under 5, regular screening for cancer, woman doctor available, doctor goes on courses, well decorated premises, convenient surgery times); the other 10 were taken from a preliminary interview study of 24 patients (staff friendly and know me, doctor listens and sorts out problems, same doctor for consultations, nurse on premises, appointments available within 48 hours, waiting time less than 20 minutes, small surgery premises, tests available at surgery). Questionnaires containing 10 pairs of criteria assigned by computer were drawn up and patients asked to give their preference in each pair. The number of times each criterion was preferred was scored and its comparative importance ranked. The three criteria most highly ranked by all patients were having a doctor who listens, having a doctor who sorts out problems, and usually seeing the same doctor (all criteria originated by patients). The three least highly valued were health education, being able to change doctor easily, and well decorated and convenient premises (all criteria originated by the government). The criteria originated by patients as a group scored significantly more highly than those originated by government as a group. In a more competitive general practice environment, in which doctors will be more inclined to satisfy the wishes of patients, officially supported indicators of good quality care might not get the encouragement that the government and doctors think that they deserve.     

Psychiatric Ethics and a Politics of Compassion The Case of Detained Asylum Seekers in Australia

Australia has one of the harshest regimes for the processing of asylum seekers, people who have applied for refugee status but are still awaiting an answer. It has received sharp rebuke for its policies from international human rights bodies but continues to exercise its resolve to protect its borders from those seeking protection. One means of doing so is the detention of asylum seekers who arrive in Australia by boat. Health care providers who care for asylum seekers in these conditions experience a conflict of “dual loyalty,” whereby their role in preserving and maintaining the health of patients can run counter to their employment in detention facilities. Many psychiatrists who have worked in the detention setting engage in forms of political activism in order to change the process of seeking refuge.     

Disclosure of sexual preference to physicians by black lesbian and bisexual women.

Physicians'' ability to diagnose and treat health care problems, particularly those with a psychosocial component, is facilitated by accurate information concerning the life-styles of their patients. White lesbians have been shown to be generally reluctant to disclose sexual orientation to their physicians, but little, if anything, is known about black lesbians. Black women, self-identified as bisexuals (N = 65) and lesbians (N = 529), were asked whether they had disclosed their homosexual behavior to their physicians. In the sample, only a third of the women had. Previous sexual experiences, both heterosexual and homosexual, were also queried to illuminate patterns of gynecologic health risk factors. Nearly all of the women reported previous heterosexual experiences.     

Croatian children's views towards importance of health care information

The aim of research was to investigate: the need for health care information of Croatian adolescents aged from 13 to 18 years; the difference in evaluation of the frequency of receiving information between hospitalized and healthy children; if the hospitalized children expectations about the frequency of receiving health care information differed significantly from information they have actually received; whose information was most comprehensible to the hospitalized children (doctors, parents, other health care givers). The children were either hospitalized in the pediatrics departments or were high schools pupils (healthy children). The hospitalized children "Completely agreed" (92.7%) with the statement "When I am sick, I should receive information about my health" in comparison to the healthy children (85.1%). In comparison to healthy children, the hospitalized children assessed that doctors, other health care givers and parents should give them information more frequently. The experience of hospitalized children indicate that they received less information then they have actually excepted. The information received from doctors was mostly in correlation with the understanding of this information. We concluded that the children want to be informed about their health, especially hospitalized children. Health care professionals should offer understandable health care information according to the children's expectation.     

Chemoembolization in the treatment of hepatic malignancy.

Numerous factors must be taken into account to best provide for the health and well-being of refugee patients in developed countries. One issue that is rarely considered is the awful and not uncommon occurrence of political torture. Large numbers of refugees and other displaced persons are survivors of political torture, and health care professionals must be prepared for this possibility when treating refugee patients. The effects of torture are pervasive, and we provide some practical considerations for health professionals who care for survivors of torture. Specific challenges include problems relating to exile and resettlement, somatic symptoms and pain, and the "medicalization" of torture sequelae.     

Questioning behaviour in general practice: a pragmatic study.

OBJECTIVE: To study the extent to which general practitioners'' questioning behaviour in routine practice is likely to encourage the adoption of evidence based medicine. DESIGN: Self recording of questions by doctors during consultations immediately followed by semistructured interview. SETTING: Urban Australian general practice. SUBJECTS: Random sample of 27 general practitioners followed over a half day of consultations. MAIN OUTCOME MEASURES: Rate of recording of clinical questions about patients'' care which doctors would like answered; frequency with which doctors found answers to their questions. RESULTS: Doctors asked a total of 85 clinical questions, at a rate of 2.4 for every 10 patients seen. They found satisfactory answers to 67 (79%) of these questions. Doctors who worked in small practices (of one or two doctors) had a significantly lower rate of questioning than did those in larger practices (1.6 questions per 10 patients v 3.0 patients, P = 0.049). No other factors were significantly related to rate of questioning. CONCLUSIONS: These results do not support the view that doctors routinely generate a large number of unanswered clinical questions. It may be necessary to promote questioning behaviour in routine practice if evidence based medicine and other forms of self directed learning are to be successfully introduced.     

Resource allocation and physician liability

Lawyer Karen Capen says funding cutbacks that have affected the services physicians can provide may cause legal problems for Canada''s doctors. If cutbacks affect the care that is being provided, they should be discussed with the patient and noted on the chart. She says physicians have "good reason to be concerned" about increasing pressures that create an imbalance between health care resources and the demand and need for services. For some doctors, these have resulted in court cases.     

Retrospective study of doctors' "end of life decisions" in caring for mentally handicapped people in institutions in The Netherlands.

OBJECTIVES: To gain insight into the reasons behind and the prevalence of doctors'' decisions at the end of life that might hasten a patient''s death ("end of life decisions") in institutions caring for mentally handicapped people in the Netherlands, and to describe important aspects of the decisions making process. DESIGN: Survey of random sample of doctors caring for mentally handicapped people by means of self completed questionnaires and structured interviews. SUBJECTS: 89 of the 101 selected doctors completed the questionnaire. 67 doctors had taken an end of life decision and were interviewed about their most recent case. MAIN OUTCOME MEASURES: Prevalence of end of life decisions; types of decisions; characteristics of patients; reasons why the decision was taken; and the decision making process. RESULTS: The 89 doctors reported 222 deaths for 1995. An end of life decision was taken in 97 cases (44%); in 75 the decision was to withdraw or withhold treatment, and in 22 it was to relieve pain or symptoms with opiates in dosages that may have shortened life. In the 67 most recent cases with an end of life decision the patients were mostly incompetent (63) and under 65 years old (51). Only two patients explicitly asked to die, but in 23 cases there had been some communication with the patient. In 60 cases the doctors discussed the decision with nursing staff and in 46 with a colleague. CONCLUSIONS: End of life decisions are an important aspect of the institutionalised care of mentally handicapped people. The proportion of such decisions in the total number of deaths is similar to that in other specialties. However, the discussion of such decisions is less open in the care of mental handicap than in other specialties. Because of distinctive features of care in this specialty an open debate about end of life decisions should not be postponed.     

AIDS and the small city: the cost at Kingston General Hospital.

Although AIDS is often thought of as a "big-city" disease, it is also becoming a serious health care issue for doctors and other health care workers in "small-city" Canada. Kingston, Ont., is one of those small cities, and of the facilities trying to come to grips with a disease about which much remains to be learned. In this article, Drs. Peter Ford and David Robertson outline their hospital''s estimate of the cost, in manpower and money, of dealing with the AIDS crisis. The final estimate: roughly $700,000. Although most of the cost will involve one-time capital spending, they point out that there will likely be ongoing labour-related costs because of the special programs and increased manpower needed to deal with AIDS patients. Clearly, AIDS is no longer a big-city disease.     

Submitting articles to the BMJ

ObjectiveTo investigate how doctors engage with patients with psychotic illness in routine consultations.DesignConversation analysis of 32 consultations between psychiatrists and patients with schizophrenia or schizoaffective disorder.SettingTwo psychiatric outpatient clinics in east London and south west London.Participants7 psychiatrists and 32 patients with schizophrenia or schizoaffective disorder.ResultsPatients actively attempted to talk about the content of their psychotic symptoms in consultations by asking direct questions, repeating their questions and utterances, and producing these utterances in the concluding part of the consultation. In response, doctors hesitated, responded with a question rather than with an answer, and smiled or laughed (when informal carers were present), indicating that they were reluctant to engage with patients'' concerns about their psychotic symptoms.ConclusionsPatients repeatedly attempted to talk about the content of their psychotic symptoms, which was a source of noticeable interactional tension and difficulty. Addressing patients'' concerns about their illness may lead to a more satisfactory outcome of the consultation and improve engagement of such patients in the health services.

What is already known on this topic

Patients with psychotic illness are difficult to engage in the health servicesNo research has been published on how doctors engage with these patients in consultations

What this study adds

Patients actively attempt to talk about the content of their psychotic symptomsDoctors'' reluctance and discomfort in engaging with this topic is apparentAddressing patients'' concerns may lead to a more satisfactory outcome of the consultation and improve engagement with services     

Underperforming doctors: a postal survey of the Northern Deanery

Objectives: To discover the perceived size of pool of doctors considered to be underperforming in general practice in the Northern Deanery and to discover whether these perceptions are based on formal assessments. Design: Postal questionnaire. Setting: Area covered by the Northern Deanery. Subjects: Seven health authority directors of primary care, seven secretaries of local medical committees, and 14 chief officers of community health councils. Results: The response rate was 100% for directors of primary care and secretaries of local medical committees and, after one reminder, 92% for chief officers of community health councils. Numbers of doctors perceived to be underperforming ranged from none to over 15 in different health authority areas. Main areas for concern were communication skills, clinical skills, and management skills. Patients’ representatives were concerned about lack of power of patients and health authorities and doctors’ lack of accountability. Health authorities were concerned about lack of power, identification of underperforming doctors, and doctors’ professional loyalty. Local medical committees were concerned about the problem of identifying underperformance. A number of methods were used for identification, and there was no common method applied. Conclusions: The number of doctors thought to be underperforming was small. Work still needs to be done on developing tools that can be used in everyday practice to enable doctors to confirm for themselves, their colleagues, and their patients that they are providing an adequate level of care.

Key messages

• To quantify the problem of underperforming general practitioners in the Northern Deanery, a postal survey was carried out among representatives of healthcare commissioners, doctors, and patients
• A small but not insignificant number of doctors were identified as providing a poor level of performance
• Main areas for concern were communication skills, clinical skills, and management skills.
• Various methods were used for identifying underperforming doctors, but there was no common method applied
• Perceived problems with the present system of dealing with underperforming doctors included identification, lack of power of patients and health authorities, and doctors’ professional loyalty and lack of accountability

     

Informal complaints procedure in general practice: first year's experience.

OBJECTIVE--To evaluate the first year''s experience of an informal patient complaints system that encourages extensive patient participation. DESIGN--Audit of an informal complaints procedure. SETTING--The Marylebone Health Centre, London. SUBJECTS--39 complaints received over the audit period. MAIN OUTCOME MEASURES--Types of complaints (administrative, about doctors or medical care or both, staff about patients, mixed, other) and resolution of complaints (how complaints were dealt with and their resolution). RESULTS--37 of the 39 complaints were resolved within two weeks. Two complaints sent direct to the family health services authority were resolved (with patients'' agreement) by the informal complaints procedure. CONCLUSIONS--The informal complaints procedure was more cost effective than the family health services authority system and was comparatively straightforward to implement within the practice without major organisational restructuring. The two way process of the procedure ensured patients received a quick response to complaints and helped morale of health centre staff.     

Do doctors accurately assess coronary risk in their patients? Preliminary results of the coronary health assessment study.

OBJECTIVE--To evaluate the ability of doctors in primary care to assess risk patients'' risk of coronary heart disease. DESIGN--Questionnaire survey. SETTING--Continuing medical education meetings, Ontario and Quebec, Canada. SUBJECTS--Community based doctors who agreed to enroll in the coronary health assessment study. MAIN OUTCOME MEASURE--Ratings of coronary risk factors and estimates by doctors of relative and absolute coronary risk of two hypothetical patients and the "average" 40 year old Canadian man and 70 year old Canadian woman. RESULTS--253 doctors answered the questionnaire. For 30 year olds the doctors rated cigarette smoking as the most important risk factor and raised serum triglyceride concentrations as the least important; for 70 year old patients they rated diabetes as the most important risk factor and raised serum triglyceride concentrations as the least important. They rated each individual risk factor as significantly less important for 70 year olds than for 30 year olds (all risk factors, P < 0.001). They showed a strong understanding of the relative importance of specific risk factors, and most were confident in their ability to estimate coronary risk. While doctors accurately estimated the relative risk of a specific patient (compared with the average adult) they systematically overestimated the absolute baseline risk of developing coronary disease and the risk reductions associated with specific interventions. CONCLUSIONS--Despite guidelines on targeting patients at high risk of coronary disease accurate assessment of coronary risk remains difficult for many doctors. Additional strategies must be developed to help doctors to assess better their patients'' coronary risk.     

Non-fundholding in Nottingham: a vision of the future.

The 1991 health service reforms introduced the internal market and grave individual fundholding practices budgets with which they could attempt to secure preferential access to secondary health care for their patients. In the view of many doctors this undermined the principle of equity on which the NHS was founded. In Nottingham 200 non-fundholding general practitioners have joined together to act in liaison with their purchasing health authority. A committed representative group of general practitioners can collectively offer more time and knowledge to the contracting process while minimising the impact on clinical workload. As a large purchaser with low management costs the group has secured access to quality secondary care which is equitably available to all patients, preventing the development of a local two tier service. Nottingham''s non-fundholding model of commissioning is equitable and efficient.     

PROVISION OF COMMUNITY‐WIDE BENEFITS IN PUBLIC HEALTH INTERVENTION RESEARCH: THE EXPERIENCE OF INVESTIGATORS CONDUCTING RESEARCH IN THE COMMUNITY SETTING IN SOUTH ASIA

Background: This article describes the types of community‐wide benefits provided by investigators conducting public health research in South Asia as well as their self‐reported reasons for providing such benefits. Methods: We conducted 52 in‐depth interviews to explore how public health investigators in low‐resource settings make decisions about the delivery of ancillary care to research subjects. In 39 of the interviews respondents described providing benefits to members of the community in which they conducted their study. We returned to our narrative dataset to find answers to two questions: What types of community‐wide benefits do researchers provide when conducting public health intervention studies in the community setting, and what reasons do researchers give when asked why they provided community‐wide benefits? Findings: The types of community‐wide benefits delivered were directed to the health and well‐being of the population. The most common types of benefits delivered were the facilitation of access to health care for individuals in acute medical need and emergency response to natural disasters. Respondents' self‐reported reasons when asked why they provided such benefits fell into 2 general categories: intrinsic importance and instrumental importance.