Experience Of Serious Illness Research Articles

Autonomous by Extension: Balancing Patient Autonomy and Vulnerability in Surrogate Decision-making.

The experience of serious illness or injury frequently results in increased vulnerability. In cases in which decision-making capacity is compromised, this vulnerability is compounded by threats to a patient's autonomy. This case report presents an opportunity to explore the elaborately entwined relationship between autonomy and vulnerability in patients with severe impairment who are reliant on surrogate decision-makers. Expanded views of autonomy and vulnerability are applied to the case of a young woman with a severe and life-altering spinal cord injury and iatrogenic loss of decisional capacity to illustrate how one can experience enhanced autonomy despite special vulnerability and can be made less vulnerable through surrogate-mediated autonomy. Also revealed is how attitudes and actions of surrogates can potentiate pathogenic vulnerability and disturb the balance between patient autonomy and vulnerability. Through methodical review and robust deliberation, clinical ethics committees can play a stabilizing role in helping distressed care teams reconcile the two.

It Starts With a Story: A Four-Step Narrative-Based Framework for Serious Illness Conversations.

Background: As a key component of advance care planning, serious illness conversations form a core intervention in palliative care. To achieve effective serious illness conversations, acknowledgment and inclusion of patient sense of self and identity are critical. However, no framework exists to describe how goals, values, and choices relate to patient identity. This conceptual gap hinders the advancement of palliative care education and practice. Objective: This philosophical investigation aimed to explicate two items: first, a novel conceptual framework for serious illness conversations; second, a structured approach to optimize these conversations within the palliative care clinical context. Methods: A philosophical and theoretical analysis was performed within an interdisciplinary context, by scholars in palliative care, medical humanities, philosophy, and bioethics. Key literature in psychology, qualitative research on the experience of serious illness, medical ethics, and choice architecture in medical decision-making were reviewed, and a structured conceptual and narrative analysis was performed. Results: An original and innovative identity-centered conceptual framework for serious illness conversations was developed. The framework consists of a four-step, reproducible approach: (1) attend to patient narrative identity, (2) identify values, (3) cocreate goals, and (4) actively promote choices. In short: attend, identify, create, and promote (AICP). Discussion: By using this conceptual framework and four-step approach, clinicians can accomplish goal-concordant serious illness care and build rich clinical relationships that foster trust and goodwill.

Coming to Terms: Female Veterans' Experience of Serious Illness.

Female veteran populations are growing internationally and are more likely than men to develop certain serious illnesses, including some cancers. In the United States, fewer than 50% of eligible female veterans sought care at Veteran Affairs facilities. In addition, female veterans are not well represented within palliative care research, and little research exists that explores the female veteran experience of living with a serious illness. The purpose of this study was to explore female veterans' experiences of living with a serious illness. This study reports the qualitative findings from a multimethod study using qualitative inquiry to explore female veterans' experiences of living with a serious illness. Participants completed individual, semistructured interviews. Braun and Clarke's method of reflexive thematic analysis guided the analysis. Ten participants shared their experiences, and 3 themes emerged: "You call this quality of life?", coming to terms, and "it" dictates everything. This study highlights the impaired quality of life of female veterans. Palliative care can serve to improve quality of life and return a sense of control back to female veterans. Nurses at all levels can have a positive impact in improving palliative care delivery for the female veteran population in both civilian and government health care sectors.

To Accompany, Always: Psychological Elements of Palliative Care for the Dying Patient.

Palliative care clinicians provide psychological support throughout their patients' journeys with illness. Throughout our series exploring the psychological elements of palliative care (PEPC), we suggested that the quality of care is enhanced when clinicians have a deeper understanding of patients' psychological experience of serious illness. Palliative care clinicians are uniquely poised to offer patients a grounded, boundaried, and uplifting relationship to chart their own course through a life-altering or terminal illness. This final installment of our series on PEPC has two aims. First, to integrate PEPC into a comfort-focused or hospice setting and, second, to demonstrate how the core psychological concepts previously explored in the series manifest during the dying process. These aspects include frame/formulation, attachment, attunement, transference/countertransference, the holding environment, and clinician wellness.

Quality Measurement of Serious Illness Communication: Recommendations for Health Systems Based on Findings from a Symposium of National Experts.

Background: Communication between clinicians and patients fundamentally shapes the experience of serious illness. There is increasing recognition that health systems should routinely implement structures and processes to assure high-quality serious illness communication (SIC) and measure the effectiveness of their efforts on key outcomes. The absence, underdevelopment, or limited applicability of quality measures related specifically to SIC, and their limited application only to those seen by specialist palliative and hospice care teams, hinder efforts to improve care planning, service delivery, and health outcomes for all seriously ill patients. Objective: We convened an expert stakeholder symposium and subsequently surveyed participants to consider challenges, opportunities, priorities, and strategies to improve quality measurement specific to SIC. Results: We identified several barriers and opportunities to improving quality measurement of SIC. These include issues related to the definition of SIC, methodological challenges related to measuring SIC and related outcomes, underutilization of technologies that can facilitate measurement, and measurement development, and dissemination. Conclusions: Patients, clinicians, and health systems increasingly align around the importance of high-quality communication in serious illness. We offer recommendations for various stakeholder groups to advance SIC quality measurement. Enthusiasm and a sense of urgency among health systems to drive and measure communication improvements inform our proposal for a set of example measures for implementation now.

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Re-presenting Illness: Cancer in Graphic Pathographies
 In this article, the aim is to analyze how the often low-valued comic media is used to re-present experiences of serious illness, more specifically cancer. The article is situated in the field of medical humanities, and especially in the field of graphic medicine. Mainly, it focuses on the strategies to depict the cancer experience in two recent graphic pathographies of breast cancer, published in North America: Teva Harrison’s In-Between Days: A Memoir About Living with Cancer (2016), and Jennifer Hayden’s The Story of My Tits (2015). In addition to investigating how the cancer experience in itself is depicted in text and images, the article highlights the ways these artists engage in a dialogue with cultural notions of cancer in general, and in particular, breast cancer.

Tears in the Cloud: Facing Serious Illness and Grief in the Digital Age (FR476)

•Compare and contrast traditional models of communicating about the personal experience of serious illness and grief.•Describe the emergence of autopathography as a therapeutic tool for patients and clinicians.•Identify unique aspects of technology-based grieving and "processing" serious illness. As social media becomes increasingly pervasive, persons with serious illness or who have experienced loss increasingly utilize various social media platforms to share information and to "process" the experience. This session will contextualize this use of social media as the natural evolution of expressing one's experience of serious illness and/or grief as new communication technologies have emerged. Specific examples will included from YouTube, Facebook, and CaringBridge. Various literary approaches to exploring and sharing the experience of serious illness and grief will be explored, including academic work, general review, and first-person narrative ("pathography"). Web-based resources will be provided for individuals facing serious illness, persons wishing to support them, and clinicians.

Нравственно-экзистенциальный контекст опыта тяжелой болезни в современности

Нравственно-экзистенциальный контекст опыта тяжелой болезни в современности

African American Elders' Serious Illness Experiences: Narratives of "God Did," "God Will," and "Life Is Better".

The foundation of culturally sensitive patient-centered palliative care is formed from one's social, spiritual, psychological, and physical experiences of serious illness. The purpose of this study was to describe categories and patterns of psychological, social, and spiritual healing from the perspectives of aging seriously ill African American (AA) elders. Using narrative analysis methodology, 13 open-ended interviews were collected. Three main patterns were "prior experiences," "I changed," and "across past, present experiences and future expectations." Themes were categorized within each pattern: been through it . . . made me strong, I thought about . . . others, went down little hills . . . got me down, I grew stronger, changed priorities, do things I never would have done, quit doing, God did and will take care of me, close-knit relationships, and life is better. "Faith" in God helped the aging seriously ill AA elders "overcome things," whether their current illness or other life difficulties.

Fragments of illness: The Death of a Beekeeper as a literary case study of cancer.

The first decisive steps of medicine towards becoming a science in its present shape happen to coincide with "the rise of the novel" in the eighteenth century. Before this well known and in our days still growing scientific specialization of medicine, the connections between literature and medicine were both many and close. By reading and analyzing a contemporary novel, The Death of a Beekeeper by the Swedish author Lars Gustafsson (1978), this article is an attempt to explore to which extent a fictional narrative about a unique case of cancer may illuminate challenges associated with the experience of serious illness. Our claim is that medicine might draw wisdom from literature, its ability to create connections through narrative, to illuminate the complexity of ethical dilemmas, and to intertwine symptoms, life stories, and contexts. We argue that by being in the company of literary narratives and philosophical questions, physicians as well as other health care professionals may acquire clinically relevant skills which help them reach the ethically defined goals of their profession.

Comment comprendre et faciliter le retour en classe des lycéens traités pour un cancer ? Retour sur une recherche-action sociologique

Based on a sociology research-action project, this article analyses the specific issue of return to school of high school students with cancer. Three detailed cases, illustrating the global results of the study, are presented to highlight the academic trajectories of these students. This situation has a particular impact on juvenile sociability. Moreover, the education of these students does not comply with French educational standards and is very complex for professionals. Finally, social inequalities in education are reinforced by the experience of serious illness, as pedagogical negotiations are even more complex due to the fact that families are not familiar with school practices.

Choosing care homes as the least preferred place to die: a cross-national survey of public preferences in seven European countries.

BackgroundCare homes are increasingly becoming places where people spend the final stages of their lives and eventually die. This trend is expected to continue due to population ageing, yet little is known about public preferences regarding this setting. As part of a larger study examining preferences and priorities for end of life care, we investigated the extent to which care homes are chosen as the least preferred place of death, and the factors associated with this negative preference.MethodsWe conducted a cross-sectional telephone survey among 9,344 adults from random private households in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We asked participants where they would least prefer to die in a situation of serious illness with less than one year to live. Multivariate binary logistic regressions were used to identify factors associated with choosing care homes as the least preferred place of death in each country.ResultsCare homes were the most frequently mentioned least preferred place of death in the Netherlands (41.5%), Italy and Spain (both 36.7%) and the second most frequent in England (28.0%), Portugal (25.8%), Germany (23.7%) and Flanders (18.9%). Only two factors had a similar and significant effect on the least preferred place of death in more than one country. In Germany and the Netherlands those doing housework were less likely to choose care homes as their least preferred place (AOR 0.72; 95% CI:0.54-0.96 and AOR 0.68; 95% CI:0.52-0.90 respectively), while those born in the country where the survey took place were more likely to choose care homes (AOR 1.77; 95% CI:1.05-2.99 and AOR 1.74; 95% CI:1.03-2.95 respectively). Experiences of serious illness, death and dying were not associated with the preference.ConclusionsOur results suggest it might be difficult to promote care homes as a good place to die. This is an urgent research area in order to meet needs and preferences of a growing number of older people with chronic, debilitating conditions across Europe. From a research perspective and in order to allow people to be cared for and die where they wish, our findings highlight the need to build more in depth evidence on reasons underlying this negative preference.Electronic supplementary materialThe online version of this article (doi:10.1186/1472-684X-13-48) contains supplementary material, which is available to authorized users.

Narratives of continuity among older people with late stage chronic kidney disease who decline dialysis

Chronic and life-threatening conditions are widely thought to shatter the lives of those affected. In this article, we examine the accounts of 19 older people diagnosed with late stage chronic kidney disease who declined dialysis. Accounts were collected through in-depth interview in the United Kingdom (March–November, 2010). Drawing on a phenomenological approach, we focus particularly on the embodied and lived experience of the condition and on how participants constructed treatment modalities and approached treatment choice. We look toward contemporary elaborations of the conceptual framework of biographical disruption to illustrate how participants managed to contain the intrusion of illness and maintain continuity in their lives. We argue that three interactive phenomena mitigated the potential for disruption and allowed participants to maintain continuity: (a) the framing of illness as “old age”; (b) the prior experience of serious illness; and (c) the choice of the treatment with the least potential for disruption. We conclude that a diagnosis of chronic illness in late life does not inevitably shatter lives or engender biographical disruption. Instead, people are able to construct continuity owing to complex narrative interpretations of diagnosis, sensation and treatment choices.

‘But they’re happening to you at the wrong time’: Exploring young adult women’s reflections on serious illness through photovoice

Although serious illness is often associated with aging, many young adults are affected by various life-threatening and chronic illnesses, and thus have experiences that do not correspond to socio-cultural expectations for young adulthood. In this article, we describe a qualitative study exploring young adult women’s experiences of serious illness. Ten participants diagnosed with a life-threatening or chronic illness in the previous three years participated in phenomenological interviews and photovoice project that focused on what it is like to be seriously ill during young adulthood. Our analysis reveals that participants experienced serious illness with respect to their position in the life course; specifically, participants perceived ill health as being inconsistent with young adulthood. This finding is illustrated by three inter-related themes: feeling abnormal and ‘off time,’ realizing vulnerabilities, and renegotiating expectations for young adulthood and the future. We propose that these themes offer evidence of how illness is experienced within the broader socio-cultural context of individuals’ lives. We conclude that social workers involved in supporting this population are well positioned to address life course disruptions brought about by illness and aid in negotiating ill health with respect to expectations for young adulthood.

Chemotherapy, Trastuzumab, and Pathological Complete Response: When Shall We Three Meet Again?

Honest, sincere, and clear writing that appeals to cardinal virtues like truth, beauty, and goodness is strongly preferred. That may seem like a tall order, but it need not be. Although the bar to publication in the AOO section is high—our acceptance rate has been less than 25% of submitted manuscripts in recent years—we embrace brand new writers and new voices of all types, including yours. The only required qualification is that an author be able to express clearly something that is important and that hasn’t been said in quite the same way before. Because of the intimate nature of many reflective essays and personal narratives, some potential AOO contributors may worry that writing a personal commentary that will be seen by thousands of readers will leave them feeling exposed or vulnerable. It is true that writers of AOO articles cannot hide behind the anonymity of data tables and Kaplan-Meier curves or trust in the formulaic, stereotyped language of the Methods section of clinical trial reports. Still, we invite you to try to overcome such inhibitions and apprehension. Your contributions may enrich our professional culture or form the basis for productive discussions. The editors of AOO encourage you to share a case or an experience with us that you found moving, interesting, or difficult, or to tell us about an aspect of medical practice that you feel passionately about that has not been featured previously in AOO. Write about what you know and what you wish other people knew, too. If you have a good story to tell, but you do not trust your own writing skills, consider working with a colleague. Every group and institution has talented communicators;perhapsacolleague isa formerEnglishmajor, forwhom turningafirst-rate ideaorapromisingroughdraft intoasparklingessay is as straightforward as calculating body surface area is to you. The diagnosis and treatment of cancer are changing rapidly and unpredictably. The role of the physician is changing, too, in response to popular expectations, shifting regulations, and ongoing evolution in the structure of health care teams. But the human experience of serious illness, as well as the importance of the physician’s presence at the bedside, remain unaltered at core. Meaningful and concise articles about those bedside experiences will engage and inform readers and shape our professional culture. We look forward to hearing from you.

"I'm sitting here by myself ...": experiences of patients with serious illness at an Urban Public Hospital.

To describe experiences of serious illness including concerns, preferences, and perspectives on improving end-of-life (EOL) care in underserved inpatients. Qualitative analysis of 1-hour interviews with inpatients at a public hospital whose physician "would not be surprised" by the patient's death or intensive care unit (ICU) admission within a year. Patients who were non-English speaking, lacked mental capacity, or had uncontrolled symptoms were excluded. A semistructured interview guide was developed and used for all interviews. We digitally recorded, transcribed, and conducted a thematic analysis of the interviews. Twenty patients participated. Difficult events such as estrangement, homelessness, substance abuse, and imprisonment shaped patients' approaches to serious illness. This influence manifested in interpersonal relationships, conceptualizations of death and concerns about dying, and approaches to coping with EOL. Because patients lacked social support, providers played significant roles at EOL. Patients preferred honest communication with providers and sharing in medical decision-making. A prolonged dying process was feared more than sudden death. Concerns included pain, dying in the hospital, and feeling unwelcome in the hospital. Patients coped by advocating for their own care, engaging with religion/spirituality, and viewing illness as similar to past trauma. Participants suggested that providers listen to their concerns and requested accessible chaplaincy and home-based services. Providers should consider that difficult life events influence underserved patients' approaches to dying. Attention to patients' specific preferences and palliative care in public hospitals and locations identified as home may improve care for patients who lack social support.

Sitting Here by Myself: Experiences of Serious Illness in Patients Hospitalized at an Urban Public Hospital (716)

Sitting Here by Myself: Experiences of Serious Illness in Patients Hospitalized at an Urban Public Hospital (716)

Illness and Meaning: A Review of Select Writings

This article explores select writings of seven authors who have examined the experience of serious illness, the meaning of it, and how individuals create or discover that meaning. These authors have been seminal thinkers in the field, and their works have influenced current thinking about illness and meaning. This article explores six major themes from select works of these authors: (a) postmodernism, culture, and illness; (b) embodied knowledge and the sick person; (c) illness narratives and their moral function; (d) key relationships for the sick person; (e) illness and death; and (f) the meaning of being ill. Apart from these, areas for future exploration are included.

Positive outcomes for survivors of haematological malignancies from a spiritual perspective

The findings indicate that there are many potentially positive outcomes, couched in terms of a spiritual journey, to be gained from the experience of serious illness for survivors who are well supported and obtain successful results from treatment. The work is from a qualitative programme exploring the notion of spirituality. The data are from the thematic analysis of verbatim transcriptions of audio-taped, in-depth, open-ended interviews with 12 survivors of haematological malignancies. The results indicate increased confidence and assertiveness, less dependence on the approval of others, greater ability to assert personal needs, increased awareness of body needs, being less judgmental and more compassionate. The positive outcomes also included the gift of extra life, the desire to live life to the fullest, a stronger sense of family togetherness, an awareness of reliable friends and family members, increased respect from others, changes in work values and an overall improvement in quality of life.

Beyond Biomedicine

Beyond Biomedicine