Models of palliative care for under-served populations in high-income countries: a scoping review protocol.

OBJECTIVE: The objective of this scoping review is to describe models of palliative care for under-served populations in high-income countries, defined as adults of culturally and linguistically diverse communities, low socioeconomic status, and/or residing in rural areas. INTRODUCTION: Models of palliative care are processual, referring to the way palliative care services are delivered as people experience a condition, injury, or event. The aim of these models is to ensure people get the right care, at the right time, by the right team, in the right place. Evidence suggests there is a wide variety of models of palliative care, but what is not known is how these models can vary to meet the needs of under-served populations. INCLUSION CRITERIA: This scoping review will consider articles that focus on models of palliative care for under-served populations, irrespective of sex, age, or primary diagnosis. METHODS: MEDLINE (Ovid), Embase (Ovid), PsycINFO (Ovid), Emcare (Ovid), CINAHL (EBSCOhost), and Scopus will be searched for articles, irrespective of language, published from 2014. Two independent reviewers will screen titles and abstracts, followed by a full-text review of potentially relevant articles. Discrepancies will be reconciled with another reviewer. Two independent reviewers will extract data from included articles using a data extraction tool developed for this review. Results will be tabulated and/or presented diagrammatically, as well as summarized to explicitly address the objective of the review. REVIEW REGISTRATION: Open Science Framework osf.io/x4ky3.

'Alcohol causes cancer': a difficult message for Australians to swallow.

Alcohol is a modifiable risk factor for cancer. Public awareness of the link between alcohol and cancer risk is poor; thus, alcohol consumers may be unknowingly putting themselves at increased risk of cancer. One way to raise awareness of alcohol-related cancer is through placing labels warning of cancer risk on alcoholic beverage containers; however, little is known about the impact of such labels. We conducted seven focus groups, comprising participants who self-identified as low-to-moderate alcohol consumers, to gauge public attitudes towards the labels and messages relating to alcohol-related cancer risk. Transcripts of discussions were coded to identify emergent themes. Participants expressed a negative response to the alcohol warning labels, and their talk worked to challenge the legitimacy of alcohol-related cancer messages, and the entities responsible for disseminating the information. These responses functioned to counter any implied recommendation for reduction in speakers' alcohol consumption. These findings illustrate how the general population make sense of information about health risks, using this knowledge to make decisions about personal behaviour. In combination with other public health initiatives, alcohol-warning labels have the potential to increase awareness of cancer risk and help in the fight against cancer, but any messaging will need to account for probable consumer resistance.

Demonstrating the importance of cultural considerations at end of life utilizing the perspective of Indian patients with cancer.

PURPOSE: This study aimed to understand Indian cancer patients' hopes and beliefs about the end of life, particularly focusing on how this informed their preferences regarding end-of-life treatment. In India, individuals' lives are mainly guided by culturally driven practices of doing right by one's family and believing death is predetermined. METHODS: Indian patients (25) diagnosed with advanced incurable cancer and aware of their prognosis participated in semi-structured interviews exploring their hopes as they approached the end of life. The interview also sought to understand patients' views and beliefs about do-not-resuscitate (DNR) orders and euthanasia. The interviews were transcribed and analysed using interpretative phenomenological analysis. RESULTS: Two major themes were identified: (i) a desire for living or dying comprising sub-themes of perceptions of current responsibilities, and having a fighting spirit versus feelings of despair, and (ii) God was the ultimate decision-maker of life and death. Furthermore, patients understood that a do-not-resuscitate order meant euthanasia and responded accordingly. Some patients reported hoping for death due to the pain and resultant suffering. However, patients did not talk about euthanasia openly, instead choosing to describe it within a larger framework of life and death. CONCLUSIONS: Indian patients reaching the end of life valued their family responsibilities which determined their desire to live or die. However, all patients believed that God decided on their life and death. It is important to consider cultural perspectives on DNR or euthanasia and to address patients' pain management needs towards the end of life.

Documenting plans for care: advance care directives and the 7-step pathway in the acute care context.

BACKGROUND: Advance care planning involves the discussion and documentation of an individual's values and preferences to guide their future healthcare should they lose capacity to make or communicate treatment decisions. Advance care planning can involve the individual's completion of an Advance Care Directive (ACD), a legislated and common-law instrument which may include appointment of a substitute decision-maker and binding refusals of treatment. In South Australia, ACDs intersect in the acute-care context with the Resuscitation Plan 7-Step Pathway (7-SP), an integrated care plan written for and by clinicians, designed to organise and improve patients' end-of-life care through the use of structured documentation. Here, we examine the perspectives of healthcare professionals (HCPs) within a hospital setting on the practical integration of ACDs and the 7-SP, exploring the perceived role, function, and value of each as they intersect to guide end-of-life care in an Australian hospital setting. METHODS: Qualitative data were collected via eight focus groups with a total of 74 HCPs (acute care, and oncology specialists; medical intern; general and emergency nurses; social workers) across two hospitals. Audio recordings were transcribed and thematically analysed. RESULTS: HCPs viewed ACDs as a potentially valuable means of promoting patient autonomy, but as rarely completed and poorly integrated into hospital systems. Conversely, the process and documentation of the 7-SP was perceived as providing clarity about clinicians' responsibilities, and as a well-understood, integrated resource. Participants sometimes exhibited uncertainty around which document takes precedence if both were present. Sometimes, the routinisation of the 7-SP meant it was understood as the 'only way' to determine patient wishes and provide optimal end-of-life care. When this occurs, the perceived authority of ACDs, or of patients' choice not to participate in end-of-life discussions, may be undermined. CONCLUSIONS: The intersection of ACDs and the 7-SP appears problematic within acute care. Clinicians' uncertainty as to whether an ACD or 7-SP takes precedence, and when it should do so, suggests a need for further clarity and training on the roles of these documents in guiding clinical practice, the legislative context within which specific documentation is embedded, and the dynamics associated with collaborative decision-making in end-of-life care.

Healthcare professionals' perspectives of patient and family preferences of patient place of death: a qualitative study.

BACKGROUND: Home death is one of the key performance indicators of the quality of palliative care service delivery. Such a measure has direct implications on everyone involved at the end of life of a dying patient, including a patient's carers and healthcare professionals. There are no studies that focus on the views of the team of integrated inpatient and community palliative care service staff on the issue of preference of place of death of their patients. This study addresses that gap. METHODS: Thirty-eight participants from five disciplines in two South Australian (SA) public hospitals working within a multidisciplinary inpatient and community integrated specialist palliative care service, participated in audio-recorded focus groups and one-on-one interviews. Data were transcribed and thematically analysed. RESULTS: Two major and five minor themes were identified. The first theme focused on the role of healthcare professionals in decisions regarding place of death, and consisted of two minor themes, that healthcare professionals act to: a) mediate conversations between patient and carer; and b) adjust expectations and facilitate informed choice. The second theme, healthcare professionals' perspectives on the preference of place of death, comprised three minor themes, identifying: a) the characteristics of the preferred place of death; b) home as a romanticised place of death; and c) the implications of idealising home death. CONCLUSION: Healthcare professionals support and actively influence the decision-making of patients and family regarding preference of place of death whilst acting to protect the relationship between the patient and their family/carer. Further, according to healthcare professionals, home is neither always the most preferred nor the ideal place for death. Therefore, branding home death as the ideal and hospital death as a failure sets up families/carers to feel guilty if a home death is not achieved and undermines the need for and appropriateness of death in institutionalised settings.

Health-related quality of life, psychosocial functioning, and unmet health needs in patients with sarcoma: A systematic review.

OBJECTIVE: Health-related quality of life (HRQoL), psychosocial distress, and unmet health needs are important patient-reported outcomes (PROs) for patients with sarcoma treated with curative intent. Syntheses of data on these PROs in patients with sarcoma are limited. METHODS: A systematic review of peer-reviewed literature published between 2007 and 2017 was conducted using five databases, guided by the PRISMA and Cochrane reporting guidelines. RESULTS: Of 7240 articles identified, 31 were included in this review. Compared with healthy individuals, patients with sarcoma frequently scored lower in physical and psychological HRQoL domains and experienced higher rates of self-image issues, depression, and suicide. However, outcomes for patients with sarcoma were relatively comparable to those with other malignancies. Anxiety symptoms were more common in the diagnosis phase, while depressive symptoms were more common in the treatment phase. Patients who are older, female, and socially isolated often reported lower HRQoL. As a sarcoma-specific HRQoL instrument is not available, and all studies have used generic instruments, key issues may have been omitted. CONCLUSION: There are few studies reporting data for HRQoL, psychosocial issues, or unmet health needs in this population. A sarcoma-specific HRQoL instrument is needed to accurately describe outcomes in this population. There is a need for further qualitative research to conceptualise the HRQoL issues relevant to this population, against which to map existing HRQoL instruments and guide adaptation or creation of a new instrument.

An examination of Australian newspaper coverage of the link between alcohol and cancer 2005 to 2013.

BACKGROUND: Alcohol is a Class-1 carcinogen but public awareness of the link between alcohol and cancer is low. The news media is a popular, readily-accessible source of health information and plays a key role in shaping public opinion and influencing policy-makers. Examination of how the link between alcohol and cancer is presented in Australian print media could inform public health advocacy efforts to raise awareness of this modifiable cancer risk factor. METHOD: This study provides a summative qualitative content analysis of 1502 articles that included information about a link between alcohol and cancer, as reported within Australian newspaper media (2005-2013). We use descriptive statistics to examine the prominence of reports, the nature and content of claims regarding the link between alcohol and cancer, and the source of information noted in each article. RESULTS: Articles were distributed throughout newspapers, most appearing within the main (first) section. The link between alcohol and cancer tended not to appear early in articles, and rarely featured in headlines. 95% of articles included a claim that alcohol causes cancer, 5% that alcohol prevented or did not cause cancer, 1% included both. Generally, the amount of alcohol that would cause or prevent cancer was unspecified or open to subjective interpretation. Coverage increased over time, primarily within community/free papers. The claim that alcohol causes cancer often named a specific cancer, did not name a specific alcohol, was infrequently the focus of articles (typically subsumed within an article on general health issues), and cited various health-promoting (including advocacy) organisations as information sources. Articles that included the converse also tended not to focus on that point, often named a specific type of alcohol, and most cited research institutions or generic 'research' as sources. Half of all articles involved repetition of materials, and most confirmed that alcohol caused cancer. CONCLUSIONS: Information about a link between alcohol and cancer is available in the Australian newsprint media, but may be hidden within and thus overshadowed by other health-related stories. Strategic collaboration between health promoting organisations, and exploitation of 'churnalism' and journalists' preferences for ready-made 'copy' may facilitate increased presence and accuracy of the alcohol-cancer message.

Translating into Practice Cancer Patients' Views on Do-Not-Resuscitate Decision-Making.

Do-not-resuscitate (DNR) orders are necessary if resuscitation, the default option in hospitals, should be avoided because a patient is known to be dying and attempted resuscitation would be inappropriate. To avoid inappropriate resuscitation at night, if no DNR order has been recorded, after-hours medical staff are often asked to have a DNR discussion with patients whose condition is deteriorating, but with whom they are unfamiliar. Participants in two qualitative studies of cancer patients' views on how to present DNR discussions recognized that such patients are at different stages of understanding of their situation and may not be ready for a DNR discussion; therefore, a one-policy-fits-all approach was thought to be inappropriate. To formulate a policy that incorporates the patient's views, we propose that a standard form which mandates a DNR discussion is replaced by a "blank sheet" with instructions to record the progress of the discussion with the patient, and a medical recommendation for a DNR decision to guide the nursing staff in case of a cardiac arrest. Such an advance care directive would have to honor specifically expressed patient or guardian wishes whilst allowing for flexibility, yet would direct nurses or other staff so that they can avoid inappropriate cardiopulmonary resuscitation of a patient dying of cancer.

Mandatory cancer risk warnings on alcoholic beverages: what are the ethical issues?

The link between alcohol consumption and cancer is well established, but public awareness of the risk remains low. Mandated warning labels have been suggested as a way of ensuring "informed choice" about alcohol consumption. In this article we explore various ethical issues that may arise in connection with cancer warning labels on alcoholic beverages; in particular we highlight the potentially questionable autonomy of alcohol consumption decisions (either with or without labels) and consider the implications if the autonomy of drinking behavior is substantially compromised. Our discussion demonstrates the need for the various ethical issues to be considered and addressed in any decision to mandate cancer warning labels.

A qualitative study investigating chemotherapy-induced nausea as a symptom cluster.

PURPOSE: The prevention of chemotherapy-induced vomiting has been improved by antiemetics, but nausea remains problematic. This study explores the concept that this is partly because patients use the term nausea to describe a cluster of symptoms. METHODS: A total of 42 cancer patients currently being treated (n = 21) or at least 6 months of past treatment (median 3.5 years; n = 21) with experience of chemotherapy-induced nausea consented to semi-structured interviews about nausea, which were transcribed and analysed. There were 24 females and 18 males. RESULTS: The nature, number, location, duration and intensity of experiences described as nausea varied. Physical and psychological symptoms included dry retching, vomiting, anorexia, indigestion, change of taste, dizziness, bloating, reflux, inability to concentrate, fatigue and restlessness. Patients located nausea in sites ranging from the head/neck, sternum and mid and lower abdomen to the whole body. Some patients identified symptoms as part of the experience of nausea, and others described symptoms associated with nausea but separate from it. For most, distinguishing features of chemotherapy-induced (as opposed to other) nausea were its constant presence over time, fatigue and emotional associations with the cancer diagnosis. Triggers varied and included food (smells), negative emotions including anxiety, movement, smells (e.g., hand cream, cleaning products), treatment-related events, tooth brushing and mentioning nausea. Prescribed antiemetics were consistently noted as reducing the intensity of, but for many, not completely alleviating, nausea. Distraction and relaxation were preferred management techniques. CONCLUSION: Control of nausea will require treating the particular cluster of symptoms which a patient is experiencing as nausea.

Australian men with cancer practice complementary therapies (CTs) as a coping strategy.

OBJECTIVE: The aim of this study was to explore how and why Australian men with cancer practice complementary therapies (CTs) and how their significant others (SOs) contribute to the regular uptake of CTs. METHODS: This qualitative study employed semi-structured interviews with 26 male cancer patients and 24 SOs. Participants were purposefully sampled from a preceding Australian survey investigating the use of CTs in men with cancer (94% response rate and 86% consent rate for follow-up interview). Interviews were conducted in a metropolitan location, and the 43 interview transcripts were analyzed thematically. RESULTS: Three core themes were identified: men used CTs as (a) problem-focused coping (e.g., diet modification), (b) emotion-focused coping (e.g., meditation), and (c) meaning-based coping (e.g., prayer). Practicing CTs helped men to cope with physical, emotional, and spiritual concerns, although some men spoke of difficulties with practicing meditation to regulate their emotions. SOs were supportive of men's coping strategies but were only rarely involved in men's emotion-focused coping. CONCLUSIONS: Complementary therapies have the potential to facilitate coping with cancer, independent of any measurable physiological benefit. Our findings suggest that when clinicians engage in conversations about CTs use, they should consider the type of coping strategy employed by their patient. Such information may enhance the efficacy of some interventions (e.g., meditation) and also provide for an opportunity to discuss patients' expectations concerning CTs.

The varied contribution of significant others to Complementary and Alternative Medicine (CAM) uptake by men with cancer: a qualitative analysis.

PURPOSE: To explore how men's Significant Others (SOs), including family members and close friends, contribute to the uptake and maintenance of specific CAM therapies. METHODS: This study was the second, qualitative phase of a mixed-methods project investigating the use of CAM in an Australian male cancer population. Male participants were purposefully selected from a pool of 403 patients who answered a survey in the first quantitative phase (94% response rate and 86% consent rate for follow-up interview). Then semi-structured interviews among 26 men with a variety of cancers and 24 SOs were conducted. All 43 interviews were recorded, transcribed, and analysed thematically. RESULTS: Men used CAM/Natural products to cope with physical concerns, and this was actively supported by men's SOs who contributed to the uptake and maintenance of these CAMs. The shared CAM preparation and consumption functioned to strengthen the bond between men and their SOs, and also helped men's SOs to cope with uncertainty and regain control. In contrast, men practiced CAM/Mind-body medicine to receive emotional benefits, and only rarely shared this practice with their SOs, indicating a need for coping with emotions in a private way. CONCLUSIONS: Men's CAM use is a multifaceted process that can be better understood by considering CAM categories separately. CAM/Natural products help men to cope with physical concerns, while CAM/Mind-body medicine assist men to cope with their emotions in a private way. Oncology professionals can use this information to better promote and implement integrative cancer care services.

The role of complementary and alternative medicine (CAM) routines and rituals in men with cancer and their significant others (SOs): a qualitative investigation.

PURPOSE: Complementary and alternative medicine (CAM) is frequently used in cancer patients, often with contribution of the significant others (SOs), but without consultation of healthcare professionals. This research explored how cancer patients integrate and maintain CAM use in their everyday life, and how SOs are involved in it. METHODS: In this qualitative study, male participants were selected from a preceding Australian survey on CAM use in men with cancer (94 % response rate and 86 % consent rate for follow-up interview). Semistructured interviews were conducted with 26 men and 24 SOs until data saturation was reached. Interview transcripts were coded and analyzed thematically, thereby paying close attention to participants' language in use. RESULTS: A major theme associated with high CAM use was "CAM routines and rituals," as it was identified that men with cancer practiced CAM as (1) functional routines, (2) meaningful rituals, and (3) mental/spiritual routines or/and rituals. Regular CAM use was associated with intrapersonal and interpersonal benefits: CAM routines provided men with certainty and control, and CAM rituals functioned for cancer patients and their SOs as a means to create meaning, thereby working to counter fear and uncertainty consequent upon a diagnosis of cancer. SOs contributed most to men's uptake and maintenance of dietary-based CAM in ritualistic form resulting in interpersonal bonding and enhanced closeness. CONCLUSIONS: CAM routines and rituals constitute key elements in cancer patients' regular and satisfied CAM use, and they promote familial strengthening. Clinicians and physicians can convey these benefits to patient consultations, further promoting the safe and effective use of CAM.

The impact of receiving treatment for cancer at a large metropolitan teaching hospital as recorded by patients using unstructured journals.

The aim was to obtain patients' experiences of the cancer treatment pathway at a tertiary teaching hospital using unstructured journals to enable health care professionals to be educated on how to improve patient care. Most of 38 patients (22 females and 16 males), average age of 58 (range 29-80), who returned diaries were starting chemotherapy for a range of cancers. Data entries were transcribed and entered into the NVIVO software to facilitate thematic analysis. Women wrote more, and more often than men, and disclosed more. For most, physical side effects dominated, comprising 25-75 % of diary entries. The most commonly mentioned were fatigue (74 %), pain (63 %), sleep disturbances (50 %), nausea (45 %) and changes in appetite (45 %). Collectively, 22 patients reported 261 separate emotional reactions including depression, anger, guilt, shame, grief, panic and confusion. The treatment environment, including personnel, impacted upon patients. Where survival is unpredictable, evidence of consistency of practitioners' approaches attains heightened significance.

A qualitative study of ethical, medico-legal and clinical governance matters in Australian telehealth services.

We examined how Australian telehealth service providers perceived and addressed ethical, medico-legal and clinical governance matters arising from service delivery. Thirty-seven telehealth clinicians and managers were interviewed and a qualitative content analysis was conducted. The services covered six Australian jurisdictions and a range of clinical disciplines. There were 11 medical specialities, surgery, mental health, paediatrics, nursing and allied health. Thirty services (83%) used video consulting and 25 (68%) delivered services to rural areas. Telehealth was reported to be beneficial by reducing adverse events, improving health outcomes, offering increased patient choice of service delivery, and improving access to services for rural areas and home care. There were observations of gains or no change in patient-provider rapport compared to face-to-face communication, with some patients reportedly preferring video. Those interviewed reported some problems with privacy and security, and variable informed consent practices. No examples of malpractice were raised, although there was a common misperception that distant providers were not responsible for clinical care. With respect to clinical governance, telehealth was seen as enabling improved quality, integration and implementation of evidence-based care, and to be a major support for the rural health workforce. Although there were potential ethical, medico-legal and governance problems in Australian telehealth services, these had been easily managed in practice.

Opioid substitution therapy--a study of GP participation in prescribing.

BACKGROUND: Opioid substitution therapy (OST) is the most commonly provided treatment for heroin dependence in Australia and has been shown to be effective. Access to OST outside of specialised public clinics and prisons relies on the participation of general practitioners. In Australia there is a shortage of GPs available to prescribe OST, which results in an unmet need for OST services. Studies have reported barriers to GP involvement in drug and alcohol work and there is little research looking at the perceptions and experiences of GPs involved in prescribing OST. METHODS: Semistructured qualitative interviews were conducted with eight experienced prescribers of OST in general practice settings in South Australia. RESULTS: All participants described similar positive and negative aspects associated with prescribing OST. Some participants commenced prescribing in such a manner as to limit the scope of their involvement. Ceasing OST prescribing was not necessarily linked to negative experiences. Exprescribers indicated that they were unlikely to recommence prescribing. DISCUSSION: This study has limited generalisability due to the small sample size but it does highlight some insights that can be gained from talking to experienced OST prescribers.

Dying cancer patients talk about physician and patient roles in DNR decision making.

BACKGROUND: Within medical and bioethical discourse, there are many models depicting the relationships between, and roles of, physician and patient in medical decision making. Contestation similarly exists over the roles of physician and patient with regard to the decision not to provide cardiopulmonary resuscitation (CPR) following cardiac arrest [the do-not-resuscitate or do-not-resuscitate (DNR) decision], but there is little analysis of patient perspectives. OBJECTIVE: Analyse what patients with cancer within weeks before dying say about the decision to forego CPR and the roles of patient and physician in this decision. DESIGN AND PARTICIPANTS: Discursive analysis of qualitative data gathered during semi-structured interviews with 28 adult cancer patients close to death and attending palliative or oncology clinics of an Australian teaching hospital. RESULTS: Participants' descriptions of appropriate patient or physician roles in decisions about CPR appeared related to how they conceptualized the decision: as a personal or a medical issue, with patient and doctor respectively identified as appropriate decision makers; or alternatively, both medical and personal, with various roles assigned embodying different versions of a shared decision-making process. Participants' endorsement of physicians as decision makers rested upon physicians' enactment of the rational, knowledgeable and compassionate expert, which legitimized entrusting them to make the DNR decision. Where this was called into question, physicians were positioned as inappropriate decision makers. CONCLUSION: When patients' and physicians' understandings of the best decision, or of the preferred role of either party, diverge, conflict may ensue. In order to elicit and negotiate with patient preferences, flexibility is required during clinical interactions about decision making.

Trick or treat? Australian newspaper portrayal of complementary and alternative medicine for the treatment of cancer.

PURPOSE: Many cancer patients within developed nations cite the media as informing their decisions to use complementary and alternative medicine (CAM). The present study describes (1) Australian newspaper coverage of CAM use for cancer between 1998 and 2007; (2) trends in reporting frequency and characteristics; and (3) how the Australian press framed stories on CAM use for cancer. MATERIALS AND METHODS: This study is a content analysis featuring quantitative and qualitative techniques, the latter guided by 'media framing', of targeted newspaper articles. RESULTS: One hundred nineteen articles focused on CAM use for the treatment of cancer were identified. Quantitative analysis found that biologically based CAMs were most frequently described and breast cancer most mentioned. Two thirds of all articles described CAM use in the context of a cure, with approximately half of these opposing this reason for use. Potential benefits of CAM were discussed more frequently than potential risks, and information on costs and how to access CAM were uncommon. Recommendations included advice to use complementary, not alternative therapies, yet advice to discuss CAM with a medical doctor was rare. Qualitative analysis found six CAM cancer-related frames, four in support of CAM use for cancer treatment. The dominant frame constructed CAM as legitimate tools to assist biomedicine (even to cure), with others depicting CAM as normal and necessary or as addressing limitations of biomedicine. Negative frames depicted CAM as questionable and risky practices and the industry/practitioners as possessing malevolent intent. CONCLUSION: These findings have implications for biomedical practitioners attempting to determine, respect and assist patient choices about their treatment.

Hope, life, and death: a qualitative analysis of dying cancer patients' talk about hope.

Although deemed vital to patient well-being, hope in persons who are terminally ill is often thought to be problematic, particularly when centered on cure. As part of a study on end-of-life decision-making, we asked 28 patients with cancer, believed to be within weeks of their death, to talk about hope. Responses were transcribed and discursively analyzed, with 3 versions of hope, each of which connected hope and life, identified--hope as essential to, and for, life; hope, life, death, and others; and, hope/s changing during (or in) life. Hope for cure was common. Rather than death-denying, patients' hope appeared life-affirming, functioning to value patients, their lives, and connections with others.