Withdrawal of Life-Sustaining Therapy After Sudden, Unexpected Life-Threatening Illness or Injury: Interactions Between Patients’ Families, Healthcare Providers, and the Healthcare System

2006 ◽  
Vol 15 (2) ◽  
pp. 178-187 ◽  
Author(s):  
Debra Lynn-McHale Wiegand
Keyword(s):  
Healthcare System ◽  
Phenomenological Study ◽  
Healthcare Providers ◽  
Family Members ◽  
Future Research ◽  
Coordination Of Care ◽  
Life Threatening Illness ◽  
Care Family ◽  
Life Threatening ◽  
Nurses And Physicians

• Background Withdrawal of life-sustaining therapy in intensive care units is increasing. Patients’ families are intimately involved in this process because the patients are usually unable to participate. Little is known about family members’ interactions with healthcare providers and the healthcare system during this process.• Objective To describe the interactions between patients’ family members, healthcare providers, and the healthcare system during withdrawal of life-sustaining therapy after a sudden, unexpected illness or injury.• Methods The investigation was part of a larger interpretative phenomenological study. Nineteen families (56 family members) who participated in the process of withdrawal of life-sustaining therapy for a family member were interviewed and observed. An inductive approach to data analysis was used to discover units of meaning, clusters, and categories.• Results The families’ experiences involved a variety of dimensions, including issues with healthcare providers (bonds and consistency with nurses and physicians, physicians’ presence, information, coordination of care, family meetings, sensitivity to time, and preparation for the dying process) and issues with the healthcare system (parking, struggles with finding privacy, and transfers of patients).• Conclusions Patients’ families need information, guidance, and support as the families participate in the process of withdrawal of life-sustaining therapy. The results of this study have important implications for clinical practice and future research.

scholarly journals The understanding of control in patients with advanced cancer. An interpretative phenomenological study

2021 ◽  
Author(s):  
Andrea Rodríguez-Prat ◽  
Denise Pergolizzi ◽  
Iris Crespo ◽  
Albert Balaguer ◽  
Josep Porta-Sales ◽  
...  
Keyword(s):  
Advanced Cancer ◽  
Perceived Control ◽  
Phenomenological Study ◽  
Qualitative Interviews ◽  
Future Research ◽  
Advanced Cancer Patients ◽  
Life Threatening Illness ◽  
Life Threatening ◽  
Oncology Unit ◽  
Patients Perspective

Abstract Background In the context of life-threatening illness, loss of control is argued as a source of suffering and loss of perceived dignity, whereas having control over the dying process has been seen as a way of maintaining personal independence. Little is known about meaning of control since the patients’ perspective. Thus, the aim of this study was to explore the meaning of control from the perspective of patients with advanced cancer. Methods We conducted semi-structured qualitative interviews using an interpretive phenomenological analysis approach. Eight patients with advanced cancer from an oncology unit and a palliative care unit from Barcelona (Spain) were interviewed. Results Two themes emerged: 1) factors that influence the perception of control, with subthemes: uncertainty about future suffering, personality traits underlying a need for control; patient-medical interactions; and 2) perceiving control over an uncontrollable illness, explained by perceived control over subjective wellbeing and relinquishing control through coping strategies. Conclusions This study allowed us to understand what control means to advanced cancer patients. The data allowed us to identify strategies that promote a sense of control in these patients. The illness, according to the participants, was experienced as series of losses. However, attention was often focused on areas where they continued to have control. Future research should address how both family members and healthcare professionals can help to empower patients.

The Frequency of Spiritual Care at the End of Life

2018 ◽  
Author(s):  
Michael J. Balboni ◽  
Tracy A. Balboni
Keyword(s):  
Spiritual Care ◽  
National Guidelines ◽  
Medical Outcomes ◽  
Demographic Differences ◽  
Serious Illness ◽  
Life Threatening Illness ◽  
Life Threatening ◽  
Clinical Relationship ◽  
Nurses And Physicians ◽  
Patients Experience

Data suggest that clinicians infrequently provide spiritual care within life-threatening illness, at least within the perspective of patients’ accounts. Boston patients indicate that 13% of patient–nurse relationships and 6% of patient–physician relationships at any point in their clinical relationship entailed a spiritual care encounter. Nurses and physicians perceive spiritual care to be a more frequent occurrence. The gap in perception that exists may partially be due to underlying religious demographic differences between patients, nurses, and physicians. While most patients experience illness as a spiritual event, and there are notable medical outcomes and growing national guidelines calling for clinician spiritual care, by most accounts, including nurses and physicians, spiritual care seldom occurs. Questions arise regarding why physicians neglect or avoid providing spiritual care in serious illness.

scholarly journals Quickcard-Based Approach to Guiding Specific Nonpharmacological Treatments in a German Parkinson’s Network

2020 ◽  
Vol 9 (7) ◽  
pp. 2272
Author(s):  
Linda Kerkemeyer ◽  
Katharina Achtert ◽  
Inga Claus ◽  
Svenja Happe ◽  
Jeannette Overbeck ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Healthcare System ◽  
Healthcare Providers ◽  
Occupational Therapists ◽  
Feedback System ◽  
Future Research ◽  
German Healthcare System ◽  
Interdisciplinary Network ◽  
Nonpharmacological Treatments

Interdisciplinary care has been shown to be effective at optimizing the treatment of patients with Parkinson’s disease. An optimized collaboration between the various healthcare providers involved in the treatment process facilitates successful care. One of the main shortcomings in the German healthcare system is the limited and unstandardized communication between practitioners. The Parkinson’s network Münsterland+ (PNM+) is an interdisciplinary network of medical and non-medical experts involved in the treatment of Parkinson’s patients: neurologists, physiotherapists, occupational therapists, speech therapists, psychologists, Parkinson’s nurses, pharmacists, patients, and relatives. The PNM+ elaborates guideline-based therapy recommendations, provided as so-called “Quickcards”. Thereby, the communication of the treating neurologist and therapists is based on a coordinated feedback system and suggestions to adequately select and, if necessary, adjust the therapy. In the German healthcare system, with its fragmented structures, the PNM+ and its activities have been shown to enhance integration of the healthcare providers and thereby optimize the care of Parkinson’s disease patients. Future research should evaluate the effects and cost-effectiveness.

The Role of Children and Adolescents in Decision Making About Life-Threatening Illness

2021 ◽  
pp. 104-117
Author(s):  
Victoria A. Miller ◽  
Melissa K. Cousino
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Children And Adolescents ◽  
Health Care Providers ◽  
Control Treatment ◽  
Future Research ◽  
Care Providers ◽  
Life Threatening Illness ◽  
Life Threatening ◽  
And Control

The concept of decision-making involvement (DMI) recognizes that children and adolescents can be involved in decision making in numerous ways and that parents and health care providers have an important role in supporting and guiding youth. Facilitating DMI may enhance youth decision-making skills, self-efficacy and control, treatment adherence, and satisfaction with care. Given the loss of control children and adolescents typically feel when diagnosed with a serious, life-threatening illness, DMI may be especially important. Parents and health care providers can facilitate child and adolescent involvement by seeking their opinions and concerns, soliciting questions, asking for information, and checking for understanding. Additional tools are available for facilitating youth involvement in decision making at the end of life. Future research is needed to develop and evaluate strategies to enhance different aspects of DMI in multiple settings and contexts across development.

Correlates of the positive psychological byproducts of cancer: Role of family caregivers and informational support

2017 ◽  
Vol 15 (6) ◽  
pp. 693-703 ◽  
Author(s):  
Kristin Litzelman ◽  
Danielle Blanch-Hartigan ◽  
Chun Cheih Lin ◽  
Xuesong Han
Keyword(s):  
Cancer Survivors ◽  
Family Caregiver ◽  
Healthcare Providers ◽  
Well Being ◽  
Cross Sectional Study ◽  
Future Research ◽  
Informational Support ◽  
Cross Sectional ◽  
Life Threatening Illness ◽  
Independent Association

ABSTRACTObjective:Experiencing a life-threatening illness such as cancer can elicit both negative (e.g., distress) and positive (e.g., growth) psychological responses. The present study sought to determine the correlates of four positive psychological byproducts in cancer survivors: becoming a stronger person, coping better with life's challenges, making positive changes in life, and adopting healthier habits.Method:Data for this cross-sectional study were taken from the Medical Expenditures Panel Survey (MEPS) Experiences with Cancer Survivorship Supplement (Yabroff et al., 2012). Cancer survivors (N = 785) reported their sociodemographic and cancer-related characteristics. Descriptive statistics were utilized to summarize cancer survivor characteristics, including demographic factors, cancer factors, and stressors and resources related to cancer. Multivariable logistic regressions were employed to assess the independent association of the stressors and resources with each psychological response, controlling for covariates. All analyses were weighted to account for the complex sampling design of the MEPS.Results:In multivariable analyses, those with a family caregiver were 50% more likely to report better coping with challenges, and around 70% were more likely to report making positive changes in life or adopting healthier habits because of their cancer. Receiving informational support from healthcare providers was also consistently associated with positive byproducts (odds ratios ranging from 1.6 to 2.0). Few of the stressors were associated with positive byproducts: having insurance problems due to cancer was positively associated with becoming a stronger person, and work limitations were associated with making positive changes in life; those who reported high perceived chances of recurrence were less likely to report becoming a stronger person.Significance of Results:Having a family caregiver and receiving detailed informational support from healthcare providers were associated with reporting positive experiences with cancer. The hypotheses and future research stimulated by these findings may improve our understanding of the process by which positive byproducts develop and may ultimately help improve psychological well-being among cancer survivors.

Violation of Dignity in Care-Related Situations

2004 ◽  
Vol 18 (4) ◽  
pp. 371-385 ◽  
Author(s):  
Joakim Öhlén
Keyword(s):  
Palliative Care ◽  
Mass Media ◽  
Family Members ◽  
The State ◽  
Focal Points ◽  
Finding Meaning ◽  
Life Threatening Illness ◽  
Welfare Systems ◽  
Life Threatening ◽  
To Receive

This study seeks to explore narratives of care-related violations for patients with life-threatening illness receiving palliative care. Narratives told in dialogues with the researcher were processed phenomenologically hermeneutically. Four structures of meanings are described: focal points in recalling the experiences, experienced consequences of being violated, relationships causing violation, and personal struggling. The phenomenon of care-related violations means a complex experience of suffering as being abandoned, confronted with hopelessness, and further wounded. This experience may be directed toward readiness to share, introspectiveness, willingness to comprehend the incomprehensible, the riskiness of facing others, and attentiveness to acts of caring. It can be experienced in various relationships to professionals, family members and friends, to the mass media, and to welfare systems. Care-related violating episodes reveal the vulnerability of the person who is already suffering and makes him or her still more wounded, when actually comfort is expected. To receive affirmation in the state of fragility with increased suffering provoked by care-related violations can contribute to a transformation from human degradation into dignity, finding meaning, or reaching reconciliation in suffering.

scholarly journals Experiences of healthcare, including palliative care, of children with life-limiting and life-threatening conditions and their families: a longitudinal qualitative investigation

2020 ◽  
pp. archdischild-2020-320189
Author(s):  
Sarah Mitchell ◽  
Anne-Marie Slowther ◽  
Jane Coad ◽  
Jeremy Dale
Keyword(s):  
Palliative Care ◽  
Healthcare System ◽  
Interpersonal Relationships ◽  
Healthcare Professionals ◽  
Family Members ◽  
Healthcare Services ◽  
Diverse Range ◽  
Specialist Services ◽  
Qualitative Interview Study ◽  
Life Threatening

ObjectivesTo understand the experiences and perceptions of healthcare services of children with life-limiting and life-threatening conditions and their family members, including palliative care.DesignLongitudinal qualitative interview study with children and their family members. Up to three in-depth interviews were conducted over 13 months with each child and family. Data were analysed using thematic analysis.SettingCommunity and hospital settings in the West Midlands, UK.ParticipantsChildren with a diverse range of life-limiting and life-threatening conditions, aged between 5 and 18 years, and their family members.Findings31 participants from 14 families including 10 children took part in 41 interviews. Two children died during the course of the study. Children accepted their conditions as part of life and had other priorities for living. Experiences of ‘fighting’ a fragmented healthcare system that focused on the biomedical aspects of their care were described. The possibility of death was rarely openly discussed. Palliative care tended to be conceptualised as a distinct service or phase of a child’s condition, rather than a broad approach. Access to palliative care depended on the availability of specialist services, and on trusted interpersonal relationships with healthcare professionals who could share uncertainty and the family’s emotional burden.ConclusionsThere is an urgent need to create a more child and family centred approach that enables palliative care to be truly integrated into the wider healthcare of children with life-limiting and life-threatening conditions. Trusted, interpersonal relationships with healthcare professionals, and more effective coordination of care are fundamental to achieving this, and should be valued and enabled throughout the healthcare system.

Meeting needs of family members of persons with life-threatening illness: A support group program during ongoing palliative care

2011 ◽  
Vol 9 (3) ◽  
pp. 263-271 ◽  
Author(s):  
Anette Henriksson ◽  
Eva Benzein ◽  
Britt-Marie Ternestedt ◽  
Birgitta Andershed
Keyword(s):  
Palliative Care ◽  
Support Group ◽  
Qualitative Content Analysis ◽  
Family Members ◽  
Pilot Project ◽  
Developmental Phase ◽  
Group Program ◽  
Potential Intervention ◽  
Life Threatening Illness ◽  
Life Threatening

AbstractObjective:The aim of the study was to describe family members' experiences of content, structure, and approach of a potential intervention including a support group program for family members of persons with life-threatening illness.Method:The study was a pilot project in a developmental phase in which a potential intervention, a support group program, was investigated. The design of the study was qualitative descriptive. Twenty-nine family members were interviewed by telephone after taking part in the program. The interviews were analyzed using qualitative content analysis.Results:The results indicate that the support group program could work as an acceptable and useful intervention for family members. The program was experienced to cover topics of immediate interest reflecting life close to severely ill persons. The structure of the program was found to be inviting, offering an opportunity to establish relationships with other participants and the caring team in a warm atmosphere.Significance of results:The study indicates the importance of health professionals inviting and interacting with family members during ongoing palliative care. The results could inspire nursing staff to initiate, develop, and deliver similar interventions.

Hope Is a Thing with Feathers

Save My Kid ◽  
2020 ◽  
pp. 3-23
Author(s):  
Amanda M. Gengler
Keyword(s):  
Critically Ill ◽  
Family Life ◽  
Healthcare Providers ◽  
Critically Ill Children ◽  
Health Capital ◽  
Life Threatening Illness ◽  
Life Threatening ◽  
Basic Concepts ◽  
Reproduction Of Inequality

Since families with critically ill children have different resources available to them, they take different approaches to managing their child’s life-threatening illness. The author introduces basic concepts that are analyzed over the course of the book, including care-captaining, which involves working hard to influence the course of their child’s treatment, and care-entrusting, which involves deferring to the judgement of their child’s healthcare providers. Additionally, the chapter covers the topic of healthcare inequality and cultural health capital, emotions and the reproduction of inequality in family life, and more.

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