When is hastened death considered suicide? A systematically conducted literature review about palliative care professionals' experiences where assisted dying is legal.

BACKGROUND: Laws allowing assisted suicide and euthanasia have been implemented in many locations around the world but some individuals suffering with terminal illness receiving palliative care services are hastening death or die by suicide without assistance. This systematic review aims to summarise evidence of palliative care professionals' experiences of patients who died by suicide or hastened death in areas where assisted dying is legal and to understand when hastened death is considered to be a suicide. METHODS: AMED, CINAHL Complete, PsycINFO, PubMED, and Academic Search Ultimate were searched for articles from inception through June 2018. Quality assessment used the Hawker framework. RESULTS: A total of 1518 titles were screened resulting in thirty studies meeting eligibility criteria for this review. Published studies about professionals' experiences from areas with legalised assisted dying includes limited information about patients who hasten death outside legal guidelines, die by suicide without assistance, or if the law impacts suicide among palliative care patients. CONCLUSION: There are a range of experiences and emotions professionals' experience with patients who die by euthanasia, assisted suicide, or hasten death without assistance. The included literature suggests improved communication among professionals is needed but does not explicitly identify when a hastened death is deemed a suicide in areas where assisted dying is practiced. More research is needed to help clarify what hastened death means in a palliative care context and identify how and if assisted dying impacts issues of suicide in palliative care settings.

Dual Liminality: A Framework for Conceptualizing the Experience of Adolescents and Young Adults with Cancer.

PURPOSE: The concept of liminality has been applied to both the experience of adolescence and to the experience of a cancer diagnosis. The aim of this study was to explore how the concept of liminality can be applied to a cohort of patients experiencing both adolescence and cancer concurrently. METHODS: Thematic analysis was applied to data from interviews with 17 participants who had been treated for cancer between the ages of 15 and 24 in an adult hospital. As the analysis developed, it became apparent that liminality was a useful conceptual framework to be applied to the data. RESULTS: Participants experienced the liminality of both adolescence and cancer. Four subthemes revealed the interaction of these two liminal states: an oscillation between childhood and adulthood; a disassociation from noncancer peers; a strong connection with other adolescents and young adults (AYAs) with cancer; and a lack of connection with older cancer peers. CONCLUSION: A model of dual liminality provides a unique conceptualization of the AYA cancer experience. Cancer in the AYA years is depicted as a navigation of two compounding transitional periods. Adolescence and cancer exacerbate one another and impede the AYA's ability to progress through either. It is this compounding of two transitional periods that makes the model of dual liminality valuable to an understanding of AYAs with cancer.

The 'lost tribe' reconsidered: Teenagers and young adults treated for cancer in adult settings in the UK.

PURPOSE: Although the UK has pioneered the development of specialist adolescent cancer units, the majority of teenagers and young adults (TYAs) continue to be treated at their local hospital or at a cancer centre alongside adults of all ages. This study aimed to elicit young people's views on this experience of having cancer treatment in an adult setting. METHODS: Seventeen participants who had been treated for cancer in an adult hospital between the ages of 15 and 24 were recruited via cancer charities and social media. Telephone interviews were conducted with the participants and the resulting data were analysed using thematic analysis. RESULTS: Already feeling out of sync as a TYA with cancer, participants felt out of place in the adult setting. Four factors contributed to this negative experience: a lack of affinity with older patients; the challenging issues in the adult setting; the absence of empathy towards TYAs by staff; and the unsuitability of the environment for adolescents. CONCLUSION: Staff working with TYAs with cancer in the adult setting should be aware of the potentially detrimental impact of this environment on this cohort of patients, and consider ways of adapting and modifying their approach.

The Experience of Adolescents and Young Adults Treated for Cancer in an Adult Setting: A Review of the Literature.

The purpose of this review is to explore the literature on the experience of adolescents and young adults (AYAs) having cancer treatment in an adult setting, rather than on a specialist adolescent cancer unit. The integrative review method was used to explore the current literature. Primary research on the topic was located systematically and then synthesized into a thematic narrative. The experience of AYAs undergoing treatment in an adult setting was generally negative. This can be attributed to three themes: feeling isolated in the adult setting; the lack of empathy from staff working in the adult setting; and the inappropriateness of the adult environment for this age group. As many AYAs with cancer will continue to have treatment in adult settings, staff working in this environment should be aware of the negative experience of this cohort and the impact this can have on a vulnerable group of patients. Staff could consider simple ways of improving the AYA experience, such as connecting AYA patients with their peers to reduce isolation; adapting their approach to take account of the unique emotional needs of this age group; and considering ways of making the environment more welcoming and age-appropriate.

The late effects of mantle field radiotherapy: the information and support needs of women survivors of Hodgkin's disease.

PURPOSE: To improve understanding of the information and support needs of women at risk from breast cancer after earlier treatment with mantle field radio therapy for Hodgkin's disease. METHOD: A multiple case study approach presenting the detailed accounts of three participants has been used to represent the issues raised by a wider sub-set of 15 Hodgkin's disease survivors. These women were participants in a larger qualitative study of 50 long term survivors of adolescent cancer. They were interviewed in depth either face to face or via the telephone. Data were analysed using methods of data reduction, display and conclusion drawing, three case studies were then purposively selected to illustrate key themes in the wider data set. KEY RESULTS: Discovering the risk of late effect breast cancer, particularly via the media, caused shock. Reliable information was difficult to locate and the support needs of the women were not met by medical services. The impact of the new risk was exacerbated by the earlier cancer experience. CONCLUSION: Information on the risk of late effects to cancer survivors regarded as trustworthy is not easy to access. When the risk of a treatment related malignancy is identified there must be a reliable way of informing both those at risk and primary health care physicians who then need to take into account the cancer history of the patient and its ongoing effect on their emotional vulnerability.

Contrasting parental perspectives with those of teenagers and young adults with cancer: comparing the findings from two qualitative studies.

PURPOSE: To compare and contrast the issues raised in narrative data gathered from parents of teenagers and young adults with cancer with interview data gathered from young adults being treated for cancer. METHODS: A narrative correspondence method elicited contributions from the parents of 28 young adults with cancer. In-depth qualitative interviews were undertaken with 28 young adults in treatment for cancer or soon after their treatment. KEY RESULTS: The secondary analysis of the two data sets illuminates contrasting familial perspectives. While some of the topics raised by parents are also addressed by young people, their perspectives differ thus offering a 'mirror image' of the same issue. The contrast in priorities can contribute to stress within the family and can increase the danger of conflict over key decisions that may impact upon the health of the young adult with cancer. CONCLUSIONS: If the potential conflicts are anticipated and understood and as a consequence handled with skill by professionals in the setting of care, this can benefit family relationships which can be thrown into crisis by the illness. It is thus important that a model of care that incorporates such an understanding is widely implemented in order to mitigate the negative impact on family dynamics when cancer is diagnosed in young adulthood.

The biographical impact of teenage and adolescent cancer.

OBJECTIVES: This paper offers an overview of the findings of research into the experience of having cancer in adolescence and young adulthood, the aims of which were to understand how age and life stage affect the illness experience and impact upon biographies and life trajectories. METHODS: The data were gathered primarily through the use of in-depth qualitative interviews with adolescents and young adults with cancer, but also through the submission of a small number of written narratives. RESULTS: Acute and life-threatening illness at a transitional life stage on the threshold of adulthood can have a long-term, and therefore chronic, effect on the life trajectories and biographies of young adult cancer patients. Many aspects of the participants' lives were affected, including education, careers, life plans, friendship networks, appearance, sexuality and fertility. The economic effects could also be far-reaching and contribute to a loss of independence, which is very fragile in this age-group. CONCLUSIONS: While recognizing the potentially devastating impact of cancer at any age, the research findings suggest a distinct effect in adolescence and young adulthood resulting from a disrupted biography at a critical transitional moment in the life trajectory that can have a chronic effect after the acute stage of the illness is passed. An age-appropriate approach to the care of young people with cancer that takes into account the distinct effects of life stage in this age-group can mitigate the negative impact on life trajectories and maximize the chances of adherence and a return to normal life after recovery.

Caring for a young adult with cancer: the impact on mothers' health.

That the carers of people with cancer are profoundly affected by their caring role is well established, yet the needs of one particular cohort, i.e. the parents of young adults with cancer, have not been well understood. The majority of carers in this situation are mothers, and it is the impact of the emotional and physical labour entailed by the care of young adults that is the focus of the present paper. Through the analysis of qualitative narrative data contributed by the mothers of young adults with cancer, the aim of this paper is to examine the health effects for women of caring for a young adult son or daughter with a life-threatening illness. The results suggest that there is an impact on the mother's health that results in unspecific, low-grade and chronic psychological and somatic symptoms which the mothers rank as a low priority. The mothers' attempts to appear to be managing may serve to mask their own health needs from health professionals whose primary concern is the health of the son or daughter. Where psychological distress is admitted, the resulting use of prescribed antidepressants may not be experienced as helpful. The conclusions are that, because of the particular circumstances of caring for a young adult son or daughter with cancer, health professionals' attention to the mothers' health throughout the cancer journey may act as a preventative measure for later and more serious ill health.

The narrative correspondence method: what a follow-up study can tell us about the longer term effect on participants in emotionally demanding research.

The author has based this article on qualitative data gathered from the parents of young adults with cancer who, over the previous 4 years, had contributed narrative accounts to a research project on the experience of caring for a young adult son or daughter with the illness. In the follow-up study, she sought to understand the longer term effect of research participation on the parents. Results show that the parents valued their involvement, and many had found the process of writing therapeutic. Their feelings of isolation had been reduced, and overall, they believed they had benefited from contributing. However, there is also an acknowledgment of the emotional demands caused by recalling painful memories for research purposes. Participants experienced the outcomes of the research as significant and interpreted resulting publications as a lasting memorial to their son or daughter.