What are the priorities for developing culturally appropriate palliative and end‐of‐life care for older people? The views of healthcare staff working in New Zealand

This paper explores the views of healthcare staff regarding the provision of culturally appropriate palliative care for Māori, Pacific Island and Chinese elders living in Auckland, New Zealand. The ageing population is culturally and ethnically diverse and, along with other developed countries experiencing high levels of migration, the challenge is balancing the rise in numbers of older people from different ethnic and cultural groups with end‐of‐life care, which reflects personal values and beliefs. Two joint interviews and ten focus groups were conducted with eighty staff across a range of primary, secondary and speciality care settings in 2010. The findings demonstrated that participants viewed the involvement of family as fundamental to the provision of palliative care for Māori, Pacific Island and Chinese elders. For Māori and Pacific Islanders, healthcare staff indicated the importance of enabling family members to provide ‘hands‐on’ care. The role of family in decision‐making was fundamental to the delivery of and satisfaction with care for older Chinese family members. Care staff highlighted the need to be cognisant of individual preferences both within and across cultures as a fundamental aspect of palliative care provision. The role of family in ‘hands‐on’ palliative care and decision‐making requires care staff to relinquish their role as ‘expert provider’. Counter to the prioritisation of autonomy in Western health‐care, collective decision‐making was favoured by Chinese elders. Providing families with the requisite knowledge and skills to give care to older family members was important. Whilst assumptions are sometimes made about preferences for end‐of‐life care based on cultural values alone, these data suggest that care preferences need to be ascertained by working with family members on an individual basis and in a manner that respects their involvement in palliative care provision.     

Decision aid tools to support women's decision making in pregnancy and birth: a systematic review and meta-analysis

Support for a model of shared medical decision making, where women and their care providers discuss risks and benefits of their different options, reveal their preferences, and jointly make a decision, is a growing expectation in obstetric care. The objective of this study was to conduct a systematic review and meta-analysis of randomized controlled trials evaluating the efficacy of different decision aid tools compared to regular care for women facing several options in the specific field of obstetric care. We included published studies about interventions designed to aid mothers' decision making and provide information about obstetrical treatment or screening options. Following a search of electronic databases for articles published in English and French from 1994 to 2010, we found ten studies that met the inclusion criteria. In this systematic review and meta-analysis we found that all decision aid tools, except for Decision Trees, facilitated significant increases in knowledge. The Computer-based Information Tool, the Decision Analysis Tools, Individual Counseling and Group Counseling intervention presented significant results in reducing anxiety levels. The Decision Analysis Tools and the Computer-based Information tool were associated with a reduction in levels of decisional conflict. The Decision Analysis Tool was the only tool that presented evidence of an impact on the final choice and final outcome. Decision aid tools can assist health professionals to provide information and counseling about choices during pregnancy and support women in shared decision making. The choice of a specific tool should depend on resources available to support their use as well as the specific decisions being faced by women, their health care setting and providers.     

Communication relating to family members' involvement and understandings about patients' medication management in hospital

Background

Many patients with complex health‐care needs are prescribed several medications on a daily basis. With admission to hospital, patients are often placed in a vulnerable position. Family members can therefore play an important role in supporting patients in decision making about managing medications and negotiating communication exchange with health professionals.

Objectives

From the perspective of family members, to explore family members'' involvement with health professionals and patients about how patients'' medications are managed in hospital.

Design

Using an ethnographic design, interviews were conducted with family members of patients admitted to hospital who had at least five medications prescribed in hospital. A purposive sampling approach was used for recruitment. A thematic framework process was used for analysis.

Setting

Interviews took place in four surgical and four medical wards in each of two Australian hospitals.

Results

Forty interviews were conducted with family members in relation to their respective relative''s medications. Family members tended to participate in passive, rather than active or shared decision‐making activities. Those who demonstrated active or shared decision making were extensively involved in managing medications and in addressing problems relating to continuity of care. Communication with health professionals was generally insufficient, despite family members'' keenness to speak with them.

Conclusions

Improved communication is needed between family members, health professionals and patients in hospitals. Greater attention should be played by health professionals in initiating communication proactively. Family members possessed valuable, unique information about patients'' medications that can be utilized to facilitate patient safety.     

The role of support groups in facilitating families in coping with a genetic condition and in discussion of genetic risk information

Background Giving children and young people information about genetic conditions and associated risk has been shown to be important to their identity, coping and decision making. Parents, however, find talking to their children difficult, and support from health professionals is often not available to them. Objective To explore the role of support groups in family coping, and in assisting parents’ communication about risk with children in families affected by an inherited genetic condition. Methods Semi‐structured interviews analysed using grounded theory and informed by models focusing on aspects of family communication. Participants Affected and unaffected children and their parents, from families affected by one of six genetic conditions, that represent different patterns of inheritance, and variations in age of onset, life expectancy and impact on families. Results Parents often sought support they did not receive elsewhere from support groups. They identified benefits, but also potential disadvantages to this involvement. These related to the specific condition and also whether groups were run solely by parents or had professional input. Support groups rarely helped directly with family communication, but attendance often stimulated family discussion, and they provided information that improved parents’ confidence in discussing the condition. Conclusions Support groups should be seen only as additional to the support offered by health and social care professionals. An increased understanding of the role of support groups in assisting families with genetic conditions has been highlighted, but further work is needed to explore more fully how this may be made more sustainable and far‐reaching.     

Bereaved Hospice Caregivers' Views of the Transition to Hospice

This study was conducted to explore the communication process between patients, caregivers, and health care professionals, including social workers, through which the decision to choose hospice occurred. Ten bereaved hospice caregivers of patients over age 60 receiving home hospice services participated in this qualitative (phenomenological) study. They represented a range of patient and caregiver characteristics such as age, ethnicity, diagnoses, length of hospice service use, and caregiver relationship to patient. A semi-structured interview guide was used to capture key components in the end-of-life communication process, including discussions caregivers had with health care professionals regarding patients' diagnoses, prognoses, end-of-life care treatment options, and eventual referral to hospice. Themes that emerged included: involvement of health care professionals, relationship with physicians, involvement of patients in decisions, content of discussion, understanding of hospice, and suggestions for improvement. Physicians and social workers were noted to be most involved in the communication, decision making, and transition to hospice; however, a need exists for a more coordinated approach to discussing end-of-life care options with seriously ill patients and their families.     

Value Assessment at the Point of Care: Incorporating Patient Values throughout Care Delivery and a Draft Taxonomy of Patient Values

Incorporation of patient values is a key element of patient-centered care, but consistent incorporation of patient values at the point of care is lacking. Shared decision making encourages incorporation of patient values in decision making, but associated tools often lack guidance on value assessment. In addition, focusing on patient values relating only to specific decisions misses an opportunity for a more holistic approach to value assessment that could impact other aspects of clinical encounters, including health care planning, communication, and stakeholder involvement. In this commentary, we propose a taxonomy of values underlying patient decision making and provide examples of how these impact provision of health care. The taxonomy describes four categories of patient values: global, decisional, situational, and external. Global values are personal values impacting decision making at a universal level and can include value traits and life priorities. Decisional values are the values traditionally conceptualized in decision making, including considerations such as efficacy, toxicity, quality of life, convenience, and cost. Situational values are values tied to a specific moment in time that modify patients’ existing global and decisional values. Finally, discussion of external values acknowledges that many patients consider values other than their own when making decisions. Recognizing the breadth of values impacting patient decision making has implications for both overall health care delivery and shared decision making because value assessments focusing only on decisional values may miss important patient considerations. This draft taxonomy highlights different values impacting decision making and facilitates a more complete value assessment at the point of care.     

Developing services for people with learning disabilities which actively involve family members: a review of recent literature

There is growing recognition that people with learning disabilities are family members and their presence in the family holds great potential to influence the functioning of the family. While much talked of in the professional literature, active family involvement in care, with family members involved in decision making and priority setting as opposed to carrying out directions of professionals remains a major challenge to all members of the multidisciplinary team. Essential to developing services that facilitate family involvement in care is an understanding of the effects a person with learning disabilities may have on a family as a unit and on the range of abilities and needs of individual family members. This paper provides a review of recent literature on the possible impact of a person with learning disabilities on the family unit. It also highlights current professional statements about family involvement in care. In addition some implications for the development of services which seek to involve family members as true partners in care are identified.     

Information and involvement

This article discusses the beliefs that provision of good quality information is the key to (a) successful and satisfying involvement of patients in their own decision‐making and (b) involvement of lay people in the research process, in debate and other involvement in wider health issues. Education of children, health professionals, the public and the media is advocated, enabling critical appraisal skills and good quality health information to lead to improved involvement of citizens in health‐care decisions of all kinds, both individual and societal. Examples of individual, group and specific group involvement through research projects, debates about screening, Citizens’ Juries, etc. are used to illustrate benefits to patients and to health provision in general.     

Patient satisfaction with the process of computerisation, consent and decision making during hospitalisation

The health organisations have moved from being centred on the professionals and are now centred on users and their expectations. The new health institutions want to know patients' perception of the quality of the care received, with particular respect to the information received, consent and decision making. It is necessary to have available measuring instruments that explore the different components of the process of information, consent and decision making. BACKGROUND: To identify the dimensions related to the process of information, consent and decision making of most importance to patients and susceptible to evaluation by questionnaire. SUBJECTS AND METHODS: Adult persons who have been hospitalised for at least two days. Qualitative study using semi-structured interviews. RESULTS: The participants wish to be informed and to participate in decision making; they do not know the meaning of the charter of patients' rights; they wish to share the whole care process with their family; written information is incomprehensible to them; and they feel that their pain and discomfort do not receive appropriate attention. CONCLUSION: It would be convenient to include the following dimensions in the questionnaires on satisfaction: a) the possibility of clarifying doubts; b) real knowledge of the rights and duties of patients; c) participation by the family in the care process; d) continuity of the same informer throughout hospitalisation; d) degree of understanding of the written information; e) involvement in decision making; and f) attention to pain and discomfort.     

“One Problem Became Another”: Disclosure of Rape-Related Pregnancy in the Abortion Care Setting

ObjectiveWe sought to explore the experiences of women who disclosed that their pregnancies resulted from rape in the abortion care setting, as well as the experiences of professionals involved in care of women with rape-related pregnancy.MethodsIn-depth interviews were conducted with 9 patients who had terminated rape-related pregnancies and 12 professionals working in abortion care or rape crisis advocacy (5 abortion providers, 4 rape crisis center advocates, 2 social workers, and 1 clinic administrator). Transcribed interviews were coded and analyzed for themes related to the experiences of disclosing rape and the consequences of disclosure in the abortion care setting.ResultsPatients and professionals involved in care of women with rape-related pregnancy described opportunities arising from disclosure, including interpersonal (explaining abortion decision making in the context of assault, belief, and caring by providers), as well as structural opportunities (funding assistance, legal options, and mental health options). Whereas most patients did not choose to pursue all three structural opportunities, both patients and professionals emphasized the importance of offering them. The most important consequence of disclosure for patients was being believed and feeling that providers cared about them.ConclusionRape-related pregnancy disclosure in the abortion care setting can lead to opportunities for interpersonal support and open options for funding, legal recourse, and mental health care. Those working in abortion care should create environments conducive to disclosure and opportunities for rape survivors to access these additional options if they desire.     

The role of the bioethicist in family meetings about end of life care

There has been little study of the content of bioethicists' communication during family meeting consultations about end of life care. In the literature, two roles for bioethicists are usually described: the "consultant" role, in which bioethicists define and support ethical principles such as those enshrined in the "rational choice" model; and the "mediator" role, which focuses on the enhancement of communication in order to reduce conflict. In this study, we use observational data to explore how bioethicists support the practice of decision making during family meetings about end of life care. In a study conducted in the Bronx, New York, USA, researchers observed and recorded 24 decision-making meetings between hospital staff and family members of elderly patients identified as being in the last stages of illness, who were unable or unwilling to make the decision for themselves. Bioethics consultants were present during five of those meetings. Although bioethicists referred to the "rational choice" decision-making hierarchy, we did not see the systematic exploration described in the literature. Rather, our data show that bioethicists tended to employ elements of the rational model at particular turning points in the decision-making process in order to achieve pragmatic goals. As mediators, bioethicists worked to create consensus between family and staff and provided invaluable sympathy and comfort to distressed family members. We also found evidence of a context-dependent approach to mediation, with bioethicists' contributions generally supporting staff views about end of life care. Bioethicists' called to consult on family meetings about end of life care do not appear to adhere to a strict interpretation of the official guidelines. In order to negotiate the difficult terrain of end of life decision making, our data show that bioethicists often add a third role, "persuader", to official roles of "consultant" and "mediator".     

A survey of the decision-making needs of Canadians faced with complex health decisions

Objective To describe the decision‐making needs of Canadians when faced with ‘complex’ health decisions characterized by balancing advantages against disadvantages. Although a national report emphasized that public confidence in the health‐care system depends on support for personal knowledge and decision‐making, there has been no systematic investigation of the Canadian population's decision‐making needs. Design Cross‐sectional telephone survey using random digit dialling. Participants National sample of 635 adults over 18 years of age, living in Canada. Results Forty‐two percentage of eligible contacts participated. Sixty‐five percent of contacts reported making ‘complex’ health decisions, commonly about medical or surgical treatments or birth control, and more commonly by women and by married/separated individuals. Most respondents took an active role in their decisions, often sharing the process with their partner or family. Being younger was associated with a more independent role. Physicians were more often involved in the decisions of respondents with less education. Fifty‐nine percent of respondents experienced decisional conflict; more conflict was seen with those who were female and feeling uninformed about options, pressured to select one particular option, and unready or unskilled in decision‐making. Less decisional conflict was seen in those who reported birth control decisions and in those who were 70 years and older. Participants used several strategies when deliberating about choices including: information gathering, clarifying their values, and seeking support and information from others. Personal counselling and printed information materials were commonly preferred methods of learning about options. ‘Essential’ criteria for judging satisfactory decision‐making included: having sufficient knowledge about the options, outcomes, and probabilities; being clear about values; selecting and implementing a choice that agrees with personal values; and expressing satisfaction with the choice. Conclusions Canadians, particularly women, face difficult decisions and need support and information from credible sources.     

Public involvement in health care priority setting: an economic perspective

Background  Public involvement in health care decision making and priority setting in the UK is being promoted by recent policy initiatives. In 1993, the British Medical Association called for public consultation where rationing of services was to be undertaken. The approach to priority setting advocated by many health economists is the maximization of quality adjusted life years (QALYs). Typically, for a particular health care programme, the QALY calculation takes account of four features: (1) the number of patients receiving the programme, (2) the survival gain, (3) the gain in quality of life and, (4) the probability of treatment success. Only one feature, that relating to quality of life, is based upon public preferences. If the QALY is to be used as a tool for health care resource allocation at a societal level then it should incorporate broader societal preferences.
Methods  This study used an interview-based survey of 91 members of the general public to explore whether the traditional QALY maximization model is a good predictor of public responses to health care priority setting choices.
Results and conclusions  Many respondents did not choose consistently in line with a QALY maximization objective and were most influenced by quality of life concerns. There was little support for health care programmes that provided a prognostic improvement but left patients in relatively poor states of health. The level of respondent engagement in the survey exercise was not sensitive to the provision of supporting clinical information.     

On the suitability of fast and frugal heuristics for designing values clarification methods in patient decision aids: a critical analysis

Background Increasingly, patient decision aids and values clarification methods (VCMs) are being developed to support patients in making preference‐sensitive health‐care decisions. Many VCMs encourage extensive deliberation about options, without solid theoretical or empirical evidence showing that deliberation is advantageous. Research suggests that simple, fast and frugal heuristic decision strategies sometimes result in better judgments and decisions. Durand et al. have developed two fast and frugal heuristic‐based VCMs. Objective To critically analyse the suitability of the ‘take the best’ (TTB) and ‘tallying’ fast and frugal heuristics in the context of patient decision making. Strategy Analysis of the structural similarities between the environments in which the TTB and tallying heuristics have been proven successful and the context of patient decision making and of the potential of these heuristic decision processes to support patient decision making. Conclusion The specific nature of patient preference‐sensitive decision making does not seem to resemble environments in which the TTB and tallying heuristics have proven successful. Encouraging patients to consider less rather than more relevant information potentially even deteriorates their values clarification process. Values clarification methods promoting the use of more intuitive decision strategies may sometimes be more effective. Nevertheless, we strongly recommend further theoretical thinking about the expected value of such heuristics and of other more intuitive decision strategies in this context, as well as empirical assessments of the mechanisms by which inducing such decision strategies may impact the quality and outcome of values clarification.     

Family members' experiences of the return to work of cancer survivors

Although family members play an important role in various aspects of coping with cancer and are significantly affected by it, little is known about their perspectives regarding return to work (RTW). This study explored attitudes and experiences of cancer survivors' family members related to cancer survivors' RTW. The present study consists of a qualitative research design, employing in-depth semistructured interviews with first-degree family members (N = 21) of cancer survivors who were approached through online social networks: spouses, children, parents and siblings. Grounded theory techniques were used for data analysis. Four themes emerged from the interviews: (a) the family's cautious voice in return-to-work decision making; (b) work–home imbalance; (c) inhibiting or promoting the effect of work on the recovery process and (d) expectations and appreciation of unconditional workplace support. The findings suggest that psychosocial and health care professionals should help family members play an active role in the decision of RTW. Professionals should also prepare family members for potential costs of RTW for the family and help them develop realistic expectations regarding workplace support of the cancer survivor.     

An integrative review on family caregivers’ involvement in care of home‐dwelling elderly

Often family members provide care‐giving, which allows older adults to remain in their homes. With declining health and increasing frailty, care‐giving of elderly people becomes a task of family caregivers (FC) in conjunction with home care nurses. It has been shown in both acute care settings and long‐term care facilities that family members prefer to be involved in decision‐making and care planning for their next of kin. Therefore, an integrative review was conducted to explore the body of knowledge of FCs’ involvement in home‐care settings from the FCs’ perspective. CINAHL, PubMed, and Cochrane databases was searched with the terms family caregiver, involvement, home care, and community dwelling. Studies written in German or English between 1996 and 2017 focusing on FCs’ caring for home‐dwelling older adults together with home care nurses were included and critically appraised. The extracted findings were analysed with concept analysis method. Twenty‐six studies were included and five themes were identified. Four themes formed the basis of assistance towards family caregivers by nurses and included “relationship building with professionals,” “negotiating with professional care,” “being professionally supported,” and “managing role expectations and knowledge sharing”. The fifth theme, “working together” described the mutual care for the care recipient. Although the first four themes were consistent with a pre‐existing conceptual model by Sims‐Gould and Marin‐Matthews (2010), the fifth required an expansion of the model with an additional contribution “collaborative practice”. The findings illustrate that involvement in care is an interactional process, which provides the basis for collaborative practices with the home care nurses for family caregivers. Family members often want to be part of the healthcare team, and nurses need contextual factors that allow providing their full range of skills and knowledge to involve family caregivers accordingly.     

The role of family carers in the use of personal budgets by people with mental health problems

Personal budgets aim to increase choice and independence for people with social care needs but they remain underused by people with mental health problems compared to other disability groups. The use of personal budgets may impact on families in a variety of ways, both positive and negative. This paper draws on interviews, undertaken in 2012–2013 with 18 family carers and 12 mental health service users, that explored experiences of family involvement in accessing and managing personal budgets for a person with mental health‐related social care needs. The sample was drawn from three sites across England, with additional carers being recruited via voluntary sector networks. Our findings show that for many people with severe mental health needs who lack motivation and confidence to negotiate access to personal budgets, carers may provide the necessary support to enable them to benefit from this form of social care support. We illustrate the role carers may play in initiating, pursuing and maximising the level of support available through personal budgets. However, some carers interviewed considered that personal budget funding was reduced because of practitioners’ assumptions about carers’ willingness and ability to provide support. We also report perceived tensions between family carers and practitioners around appropriate involvement in decision‐making. The study findings have implications for local authorities, practitioners and family carers in supporting the involvement of family carers in support for people with severe mental health problems.