Face Of Serious Illness Research Articles

Tools for tomorrow: a scoping review of patient-facing tools for advance care planning.

Advance care planning (ACP) supports individuals in aligning their medical care with personal values and preferences in the face of serious illness. The variety of ACP tools available reflects diverse strategies intended to facilitate these critical conversations, yet evaluations of their effectiveness often show mixed results. Following the Arskey and O'Malley framework, this scoping review aims to synthesize the range of ACP tools targeted at patients and families, highlighting their characteristics and delivery methods to better understand their impact and development over time. Studies included focused on patient-facing ACP tools across all settings and mediums. Exclusions were applied to studies solely targeting healthcare providers or those only aiming at completion of advance directives without broader ACP discussions. Searches were conducted across PubMed, Embase, CINAHL, The Cochrane Library, and Web of Science. Data were extracted using a predesigned spreadsheet, capturing study population, setting, intervention modality, and intervention theme. Tools were categorized by delivery method and further analyzed through a year-wise distribution to track trends and developments. We identified 99 unique patient-facing tools, with those focusing on counseling (31) and video technologies (21) being the most prevalent while others incorporated online platforms, print materials, games, or some combination of different delivery methods. Over half the tools were designed for specific patient groups, especially for various diseases and racial or ethnic communities. Recent years showed a surge in tool variety and innovation, including integrated patient portals and psychological techniques. The review demonstrates a broad array of innovative ACP tools that facilitate personalized and effective ACP. Our findings contribute to an enhanced understanding of their utilization and potential impacts, offering valuable insights for future tool development and policy making in ACP.

The power of hope

My patient was in his late 20s and dying of an advanced sarcoma. He came to our institution seeking a miracle-a cure for his incurable cancer. Despite second and third opinions, he never relinquished his hope that science would cure him. In this story, I explore how hope allowed my patient, and others like him, to reclaim their narratives and maintain their personhood in the face of serious illness.

Integration of the Verbatim Exercise into a Hospice and Palliative Medicine Fellowship.

One of the more challenging aspects of specialty level training in any medical fellowship is learning to communicate mindfully and effectively with patients and families in the face of serious illness. For the past five years, our accredited Hospice and Palliative Medicine (HPM) fellowship program has been integrating the "verbatim"-an exercise with a long and integral history in the training of health care chaplains. Verbatims are word-for-word accounts of a clinician's encounter with a patient and/or the patient's family. The verbatim serves as a formative educational exercise offering a method to hone one's clinical skills and competencies, while providing a unique space to practice self-awareness and self-reflection. Although sometimes difficult and intense for the fellow, we have found this to be a helpful exercise in improving the fellow's ability to make meaningful connections with patients and leading to improved outcomes of communication episodes. This potential growth in self-awareness supports both resiliency and mindfulness, which are essential skills for longevity and reduction of burnout risk in the field of HPM. The verbatim invites all participants to reflect on their own participation in facilitating whole person care to patients and families. Out of the six HPM milestone metrics for fellowship training, the verbatim exercise supports achievement in at least three of the milestones. We present survey data over the past five years of our fellowship in support of the utility of this exercise and for consideration to include this exercise in a palliative medicine fellowship. We offer additional suggestions for further study of this formative tool. This article delineates the verbatim technique and its specific integration into our accredited ACGME Hospice and Palliative Medicine fellowship training program.

PSYCHOLOGICAL WELL-BEING AND RESILIENCE AMONG COVID RECOVERED PATIENTS

The present cross-sectional correlational study was conducted with an aim to investigate the relationship between Psychological well-being and Resilience among Covid Recovered Patients. The data was collected through convenient sampling and a sample of 142 respondents from Gujarat state in the age range of 18-60 years participated by filling up Socio- demographic measure, the Ryff’s Psychological Well-being, and The Resilience Scale questionnaire. The Questionnaires were converted into Gujarati language and then validated by the experts. Spearman’s rho correlation and independent sample t-test were performed to determine the relationship between psychological well-being and Resilience among the research participants. Data was analysed statistically at the level of p < 0.05. The results from the study showed that there was a statistically significant Positive relationship between Psychological well-being and Resilience. Prospective longitudinal studies are needed to address and encourage researchers and clinicians to give as much attention to the development and maintenance of psychological well-being in the face of serious illness as they do to the aetiology and treatment of psychiatric symptoms.

Depiction of Resuscitation on Medical Dramas: Proposed Effect on Patient Expectations.

The public has unrealistic views regarding the success of cardiopulmonary resuscitation, and one potential source of misinformation is medical dramas. Prior research has shown that depictions of resuscitation on television are skewed towards younger patients with acute injuries, while most cardiac arrests occur in older patients as a result of medical comorbidities. Additionally, the success rate of televised resuscitations on older shows has vastly exceeded good outcomes in the real world. We sought to understand resuscitation outcomes on current medical dramas and to review the literature for evidence that media affects patient decision-making. We reviewed medical dramas to evaluate the demographics of cardiac arrest victims and the success rate of resuscitations and compared the results to outcomes for real-world patients. Medical dramas continue to focus on trauma as the main cause of cardiac arrest and portray favorable outcomes more frequently than should be expected. Patients who believe the overly optimistic prognoses portrayed on television may be more likely to desire aggressive medical care in the face of serious illness. Healthcare workers should anticipate the need to counter misinformation when discussing patient goals of care and end-of-life planning.

The Degenerates by J. Albert Mann

Reviewed by: The Degenerates by J. Albert Mann Kate Quealy-Gainer, Assistant Editor Mann, J. Albert The Degenerates. Atheneum, 2020 [288p] Trade ed. ISBN 978-1-5344-1935-3 $18.99 E-book ed. ISBN 978-1-5344-1937-7 $10.99 Reviewed from galleys R Gr. 8-12 When fourteen-year-old London ends up pregnant and homeless on the streets of 1928 Boston, she’s brought to the Massachusetts School for the Feeble-Minded, where sisters Rose and Maxine and their friend Alice are already residents. Deemed [End Page 311] “imbeciles” or “morons,” the three girls are mostly resigned to their fate, but London is hellbent on getting out, and Rose admires her no-nonsense, tough girl persona. Avoiding the watchful eyes of her overprotective sister, Rose manages to squirrel away supplies and money for London, but the girl’s escape attempts only bring further trouble for herself and Rose. Meanwhile, Maxine and Alice realize that their romance might only have a fighting chance on the outside, so they join the effort to flee. While focalization shifts among the four girls, it’s really London’s actions and personality that drive the story, propelling the girls towards a surprising ending literally born of fire. Mann details the casual cruelty of the administration and the blatant racism and prejudice (one girl is African American, another physically disabled) underlying their medical assessments, but she interjects the bleakness with glimmers of hope, from Maxine and Alice’s relationship to London’s caring for the institute’s babies to Rose’s resilience even in the face of serious illness. An author’s note provides the diagnoses for each girl, explaining also that much of the dialogue between doctors and nurses, shockingly offensive to contemporary ears, was based on primary sources. Somberly poignant, this could make a compelling fictional counterpart to Noyes’ Ten Days a Madwoman (BCCB 2/16). Copyright © 2020 The Board of Trustees of the University of Illinois

Fortellingens betydning for å fremme livsmotet i møte med alvorlig sykdom

The importance of the story to promote hope and life courage in the face of serious illnessIn connection with my PhD (Mæhre, 2017), I conducted qualitative interviews with five critically ill patients in an enhanced ward of a nursing home, based on the Coordination Reform. The purpose of the interviews was to increase understanding of patient experiences of the ward, and their perceived challenges and needs for assistance. The research method was a hermeneutic-phenomenological approach. The essay is based on one of the patient interviews, which has been rewritten as a narrative. This narrative emphasizes how the patient has fought against her illness, and her need to be seen as herself as a person and not understood in terms of a diagnosis. The illness narrative becomes part of her life story. The article highlights opportunities for narratives in the face of serious illness. The narrative reveals how a changed life situation, despite severe illness, can add courage and joy to life, but also how it can lead to hopelessness, doubt, and uncertainty.

INTEREST GROUP SESSION—HOSPICE, PALLIATIVE AND END-OF-LIFE CARE: ADDRESSING ADVANCED ILLNESS CHALLENGES THROUGH SYNERGY, PLANNING, COLLABORATION, AND ADVOCACY

Advanced illness occurs when health conditions become serious, general health and functioning declines, and treatments begin to lose their impact. Advanced care planning (ACP) is critical, but challenges such as communication barriers, system fragmentation, and a lack of formal and informal supports can negatively influence ACP and quality of life. How can diverse groups of persons with advanced illness, their family members and friends have greater synergy when planning for care in the face of serious illness? What are the best practices for planning and provision of a spectrum of needed services and support during the dying process and afterwards? We extend a conversation important for formal and informal network members to transform the culture of ACP, death, dying, and bereavement for diverse vulnerable populations. For this symposium, we will present information on ACP and care for LGBT populations and older Latinos, those living in long-term care settings, and persons receiving Adult Protective Services (APS). We will discuss strategies for synergy, collaboration, and advocacy among persons with advanced illness and their formal and informal care networks as a means of reducing health disparities and promoting self-determination in the midst of advanced illness challenges.

Parenting in the face of serious illness: Childhood cancer survivors remember different rearing behavior than the general population

A child's cancer diagnosis and treatment affect the whole family. While it has been recognized that parents are an important resource for their children, little is known about the specifics of parenting in the face of serious illness. We used the Recalled Parental Rearing Behavior Questionnaire in a register-based cohort of adult childhood cancer survivors (CCS) (N=951) and a representative population sample of the same age range (N=2042). The questionnaire assesses behavior of mothers and fathers with three scales (emotional warmth, rejection/punishment, and control/overprotection) by querying the (former) child. We compared the two groups using general linear models. With a hierarchical linear regression analysis, we tested associations of recalled rearing behavior with disease- and treatment-related factors. Compared with the general population, CCS remembered both parents as emotionally warmer, more overprotective, and less punishing/rejecting and less ambitious. The regression analysis showed that having received radiotherapy (β=0.092; P=.009) and chemotherapy (β=0.077; P=.027) was positively related to memories of maternal emotional warmth. CCS remembered parenting styles which are generally deemed more positive. The extent of recalled control and overprotection deviated from the population in different directions, suggesting that parenting in childhood cancer entails more complex adaptations than being affectionate and giving comfort. The results suggest an adaptation of parental behavior to particularly challenging treatments. They highlight potential vulnerability and resilience factors, some of which were sex-dependent.

Now or never: smoking cessation discussions in the face of serious illness.

Sociological research on medical discussions of lifestyle suggests that smoking patients may be seen as knowingly causing their medical problems. Therefore, it may be interactionally problematic for doctors to raise the issue of smoking cessation in relation to patients' serious health problems. While a serious illness can be expected to bring to the fore the relevance of smoking cessation advice, it may also give rise to questions about patients' right to treatment. This study uses conversation analysis to explicate how patients and doctors manage issues of responsibility in smoking cessation discussions in the face of a serious medical problem that strongly correlates with smoking. The findings show that whilst ill health can be referred to in a confrontational manner, it can also give smoking cessation a 'now or never' status that downplays patients' responsibility for not having quit before. Based on these findings, the paper concludes that for warranting further smoking cessation advice, how doctors and patients verbalise the link between smoking and a serious medical problem matters more than whether they do so.

Just This Side of the Edge: Clinical Perspectives in the Face of Serious Illness and Death of the Analyst

ABSTRACTThis article considers the therapeutic relationship when there is a serious illness or impending death of the analyst. It makes use of perspectives from psychoanalysis and analytical psychology to explore the intersection of the need to balance the therapeutic frame with authenticity in an intersubjective field. The author develops the idea of “the dying healer” as a uniquely liminal and powerful archetypal character. The enigma of death coming onto the horizon is seen as an existential situation that provides opportunities for a most profound healing experience.

Palliative Care for Children with Comorbid Autism Spectrum Disorders (FR473)

•Identify 3 core aspects of development unique to patients with autism spectrum disorders (ASD).•Describe how developmental differences impact symptom assessment and pain behaviors in children with ASD who also have a serious illness.•Develop two unique strategies to appropriately care for children with autism needing palliative care services due to comorbid serious illness. Using a case-based approach, this session will aim to illustrate the unique aspect of providing palliative care for children with comorbid autism spectrum disorders (ASD). ASDs are neurodevelopmental disorders characterized by social deficits, communication difficulties, repetitive behaviors, and sensory issues. The prevalence of autism has increased markedly in the past several decades. Certain medical conditions are more common in children with ASDs, including epilepsy and genetic abnormalities. Additionally, mortality rates are 3-10 times higher in patients with ASDs than the general population. With the increasing prevalence of autism, palliative care teams are likely to care for patients with ASDs and a comorbid serious illness. Because children with autism have profound limitations in communication and social reciprocity, their experiences with medical care are unique and can be challenging. Providing a thorough palliative care assessment and delivering needed services is often an immense undertaking that can be quite stressful for all involved in care. The healthcare experience for all three stakeholders—patient, family, and medical providers—presents unique challenges; however, positive results can be obtained with advanced planning. The session will also discuss strategies for providing effective communication and care for children with autism who have a family member with a serious illness. This session will provide concrete strategies that can enhance care provided to patients with ASDs and a comorbid serious illness and their families. By recognizing and addressing the particular needs of patients with ASDs, palliative care providers can develop trusting and productive relationships with patients and families that can allow for delivery of optimal palliative care. Participants in this session will learn how to develop an interdisciplinary care plan that will optimize the healthcare experience for all involved in the care of patients with autism and their families in the face of serious illness.

MUSIC IN THE CARE OF CHILDREN AND ADOLESCENTS WITH CANCER: INTEGRATIVE REVIEW

ABSTRACT Integrative review which goal was to identify the scientific production published about the use of music in the care in health of children and adolescents with cancer from 2004 to 2014. The search was conducted in SciELO, LILACS, BDENF, MEDLINE, PubMed and The Cochrane Library databases. Seven studies were selected, which showed positive effects in the use of the music such as decrease of pain, anxiety, depression and showed that the music can bring benefits to the patient and their families. Two categories were defined on the use and effects of music and the patients' perspective, parents and professionals about this practice were elaborated. It was concluded that the use of music as a complementary therapy can improve child and adolescent's physical and mental well-being in face of serious illness and its treatment, and helps to strengthen the bond between the patient and his family, as well as the health care team.

Learning from the public: citizens describe the need to improve end-of-life care access, provision and recognition across Europe.

Background: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. Methods: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, the Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. Results: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. Conclusions: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery.

Intergenerational learning about keeping health: a qualitative regional Australian study

Understanding the conditions under which families try to influence members' health-related practices can provide information to build concepts adding to models of health promotion. This paper reports on an exploratory qualitative study examining the influences of intergenerational relationships in shaping beliefs, knowledge and practices about health and illness in a regional Australian city. We conducted semi-structured interviews with 27 adults with family members of other generations living in the city, all of whom had experience of asthma. We found that overall people's experience of health and illness, particularly in childhood, was taken for granted and not reflected upon. It was in the face of serious illness or death of a family member that objective knowledge about health and illness was sought and integrated within the family leading, in most cases, to significant lifestyle changes or 'doing things differently'. We drew on Bourdieu's concept of the three forms of theoretical knowledge in analysing our findings. We found the concept of knowledge as 'primary taken-for-granted experience', and the concept of praxeological knowledge as the knowledge created by the dialectical relationships between an individual subject and objectives structures were helpful. To influence individual health practices, we need to acknowledge how the family context confirms the taken-for-granted health practices of an individual and the family circumstances that might lead families to seek objective knowledge and make lifestyle changes to promote health.

Blindness: Looking but Not Seeing

DOI: 10.1200/JCO.2011.40.9854 “Blinder than he who has lost his eyes is he who closes them tightly and refuses to see the light of day.” A 76-year-old man—a married architect with prostate cancer and bone metastases—was confined to a wheelchair because of weakness, lower back pain, and leg pain. There was hardly room for the patient’s wheelchair in the oncologist’s office, given the size of the physician’s desk. The oncologist scanned the patient’s medical records on a computer located in the center of the desk and relayed unemotionally that the latest test results were normal. When the patient’s wife commented anxiously about her husband’s continued pain, the oncologist suggested (while typing and without looking up from the screen) that the patient increase his doses of an opioid and acetaminophen. The patient requested a letter to bring to his family physician, and the oncologist instructed him to wait outside while it was typed. The patient and his wife complied with the physician’s instructions, but they felt alone in their suffering. Blindness can be a metaphor for failed communication. To see can mean to look with one’s eyes, but it can also mean to understand. Thus, a person may be symbolically blind (ie, not understanding, not connecting) or may be physically without sight. We asked ourselves: What is the meaning of failing to see a patient’s anguish, as in the case described? Is this a form of blindness? Two literary works can assist us in exploring the idea of blindness as a trope to illuminate impaired communication: Blindness, a novel written in 1995 by the Portuguese Nobel Prize winner Jose Saramago, and The Country of the Blind, a short story written in 1904 by the English writer H.G. Wells. In these fictional, allegoric tales, both Saramago and Wells use blindness as a metaphor to describe psychosocial ills. In Saramago’s novel, blindness is created by self-induced mass hysteria, which spreads like a contagious disease as people struggle to survive in rapidly changing conditions. Society degenerates, and a state of emergency prevails, as people stop seeing the needs of others and become indifferent to suffering; blindness becomes a catalyst for apathy. Wells, in contrast, describes a lost village in the South American Andes where all inhabitants are genetically blind. One day a hiker from the outside world stumbles on this isolated civilization. At first, the hiker is surprised by the prosperity and peacefulness of the villagers; he cannot understand how anyone who is blind can live a happy and meaningful life. The newcomer tries to explain the wonder of sight to the blind inhabitants, but without a frame of reference, they cannot understand the concept. The village doctor even suggests removing the hiker’s eyes, because his strange talk indicates that they might be diseased and harming his mind. Wells’ themes include the suggestion that the barriers between some cultures or groups are insurmountable, despite insight, empathy, and even love. In the clinical case described here, the oncologist made recommendations that were technically correct but failed to note or act on the patient’s distress. Saramago claims that individuals have a choice of whether to see. Saramago’s unconscious, self-inflicted blindness parallels the process of denial. Denial is a survival mechanism and a process to aid coping. All of us have seen patients deny unto death, to protect themselves from fear or anxiety. Oncologists also engage in a form of denial at times, which is comparable to losing insight. This form of denial is a mechanism of defending against the frustrating emotions wrought by failure to save or prolong life in the face of serious illness. Denial and avoidance may transiently protect, but they prevent us from connecting with our patients and deepening our understanding of their experiences. Wells, in contrast, describes sight or blindness as innate, similar to empathy, which is modifiable but for which some individuals may have a greater intrinsic capacity than others on a neurophysiologic basis. Exploration of empathy is at the core of Wells’ story; the protagonists have to imagine in their minds’ eye what it is like to be blind or to be sighted. Empathy is also part of the oncologist’s diagnostic skills in eliciting and elucidating symptoms, both physical and psychologic. Yet at the same time, empathy may awaken unrecognized death anxieties in the clinician. Blindness can manifest in many ways in the consulting room. The physician can be blind to the patient’s repressed anger and depression, blind to tension between partners, blind to the misery of JOURNAL OF CLINICAL ONCOLOGY A R T O F O N C O L O G Y VOLUME 30 NUMBER 25 SEPTEMBER 1 2012

Presenteeism: Are We Hurting the Patients We are Trying to Help?

Presenteeism: Are We Hurting the Patients We are Trying to Help?

An Old Woman and her Case Worker: Accommodation and Resistance in the Face of Serious Illness

From the Luella Hannan Memorial Foundation archives in Detroit, Michigan, we document the persistent efforts of one client to remain in her beloved home amidst progressive illness and her position as an older woman facing economic limitations during the Great Depression. We consider the development of social case work methodology during this time period and demonstrate how this woman exerts self-determination and personal power by both accommodating and resisting these emerging case work principles in her relations with the case worker.

Spirituality Assessments Can Enhance Care

Spirituality Assessments Can Enhance Care

Distinguishing Denial From Authentic Faith in Miracles: A Clinical-Pastoral Approach

Is it possible to distinguish between authentic religious faith in a miraculous cure and the psychiatric syndrome of denial in the face of serious illness? There are, of course, atheists who consider all religious beliefs delusional, and, therefore, would not accept the meaningfulness of the distinction. Many others, however, including some persons of faith, might still demur before undertaking such a task. They might, at first pass, think that the attempt to distinguish between genuine faith and psychological denial is either disrespectful toward the patient, intolerant, or an impossible task, given what is taken to be the inherently private nature of religious matters. For these critics, the notion that anyone other than the individual could make a judgment about the authenticity of the faith of another is itself morally offensive. What seems at first the morally correct response might seem to be, “How could one dare to question the authenticity of the religious views of another person?” Yet, such a view, upon careful analysis, is no less dismissive of the religious person than the view of the “hard-nosed” atheist. The assertion that it is impossible to distinguish authentic faith from a disordered psychiatric state could only be true if faith were taken to be at least functionally equivalent to a disordered psychiatric state. Such an assumption could hardly be construed as reflecting an attitude of respect for religious persons, or evidence of the kind of tolerance that ought to characterize a liberal polity. Therefore, contrary to many people’s initial impressions, it is deeply insulting to religious persons to suggest that expressions of belief in miracles cannot be questioned. Important clinical observations support this view. It is a well-known fact that mentally ill persons not infrequently use religious language. Except in unusual cases, such as malingering, this is usually not a conscious manipulation of reli