Witness and duty: answering the call to speak for dementia sufferers in advanced illness

2009 ◽  
pp. 189-208
Author(s):  
Pauline Savy
Keyword(s):  
Advanced Illness

scholarly journals Methylnaltrexone Treatment of Opioid-Induced Constipation in Patients with Advanced Illness

2009 ◽  
Vol 38 (5) ◽  
pp. 683-690 ◽  
Author(s):  
Bruce H. Chamberlain ◽  
Karen Cross ◽  
Jaron L. Winston ◽  
Jay Thomas ◽  
Wenjin Wang ◽  
...  
Keyword(s):  
Advanced Illness

Accuracy incentives and framing effects to minimize the influence of cognitive bias among advanced cancer patients

2021 ◽  
pp. 135910532110256
Author(s):  
Eric A Finkelstein ◽  
Yin Bun Cheung ◽  
Maurice E Schweitzer ◽  
Lai Heng Lee ◽  
Ravindran Kanesvaran ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Advanced Cancer ◽  
Cognitive Biases ◽  
Survey Design ◽  
Framing Effects ◽  
Advanced Cancer Patients ◽  
Advanced Illness ◽  
Treatment Benefits ◽  
Hypothetical Treatment ◽  
Survival Expectations

Many patients with advanced illness have unrealistic survival expectations, largely due to cognitive biases. Studies suggests that when people are motivated to be accurate, they are less prone to succumb to these biases. Using a randomized survey design, we test whether offering advanced cancer patients ( n = 200) incentives to estimate their prognosis improves accuracy. We also test whether presenting treatment benefits in terms of a loss (mortality) rather than a gain (survival) reduces willingness to take up a hypothetical treatment. Results are not consistent with the proposed hypotheses for either accuracy incentives or framing effects.

scholarly journals Support received by family members before, at and after an ill person’s death

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Anna O’Sullivan ◽  
Anette Alvariza ◽  
Joakim Öhlén ◽  
Cecilia Larsdotter
Keyword(s):  
Survey Design ◽  
Family Members ◽  
Time Of Death ◽  
Healthcare Staff ◽  
Care Needs ◽  
Advanced Illness ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Bereaved Family

Abstract Background It is widely recognised, that family members are central to care of people with advanced illness, and that support should be provided to all family members in need thereof. The aim of this study was to investigate family members’ experiences of support received during the last three months of life, at the time of death and after the death of a person with advanced illness. Methods A retrospective cross-sectional survey design was employed, using the VOICES(SF) questionnaire and multiple methods for data analyses. The sample consisted of 485 bereaved family members (aged: 20–90 years old, 70% women) of people who died in hospital between August 2016-April 2017. Results Of the family members, 58,8% reported they had received enough help and support during the illness, whereas 30,2% had not. Family members’ comments about support during the illness were mainly related to care the ill person had or had not received, rather than about support they themselves received. Of all family members, 52,8% reported having had enough support at the time of the ill person’s death. Related to support at death, 14,6% reported that the imminence of death was not clear, which was described as having affected their opportunity to be with the dying person at the time of death. Of all, 25,2% had a follow-up conversation after the death, 48% did not and did not want to, and 21% had no follow-up conversation, but would have liked one. A follow-up conversation was described as helpful for the bereavement process, and disappointment was expressed when not receiving support after the death. Conclusions Family members’ experiences of support were partly related to whether the ill person’s care needs were fulfilled. Healthcare staff expressing empathy and respect in the care of dying people and their family members were important for family members’ experiences of support. Family members’ difficulty recognising that death was imminent and the importance of healthcare staff providing them with clear information were expressed in connection with support at death. Follow-up conversations were valued by family members, especially if with a healthcare professional who was present at the time of death.

Wound Care in Advanced Illness: Application of Palliative Care Principles

2007 ◽  
Vol 10 (5) ◽  
pp. 1159-1160 ◽  
Author(s):  
Solomon Liao ◽  
Robert M. Arnold
Keyword(s):  
Palliative Care ◽  
Wound Care ◽  
Advanced Illness

Spirituality in patients with advanced illness: The role of symptom control, resilience and social network

2016 ◽  
Vol 21 (12) ◽  
pp. 2765-2774 ◽  
Author(s):  
Miguel Fombuena ◽  
Laura Galiana ◽  
Pilar Barreto ◽  
Amparo Oliver ◽  
Antonio Pascual ◽  
...  
Keyword(s):  
Social Support ◽  
Structural Model ◽  
Symptom Control ◽  
Cross Sectional Study ◽  
Physical Symptoms ◽  
Advanced Illness ◽  
Cross Sectional ◽  
Palliative Care Teams ◽  
Symptomatic Control

In this study, we analyzed the relationships among clinical, emotional, social, and spiritual dimensions of patients with advanced illness. It was a cross-sectional study, with a sample of 108 patients in an advanced illness situation attended by palliative care teams. Statistically significant correlations were found between some dimensions of spirituality and poor symptomatic control, resiliency, and social support. In the structural model, three variables predicted spirituality: having physical symptoms as the main source of discomfort, resiliency, and social support. This work highlights the relevance of the relationships among spirituality and other aspects of the patient at the end of life.

The Hospice Companion

2021 ◽  
Keyword(s):  
Emergency Medicine ◽  
Palliative Care ◽  
Time Use ◽  
Pain Control ◽  
Review Literature ◽  
Evidence Based ◽  
Advanced Illness ◽  
Control Techniques ◽  
Team Meetings ◽  
Common Problems

The Hospice Companion is an evidence-based handbook meant to guide hospice teams in the assessment and management of common problems, situations, conditions, and symptoms encountered in the care of advanced illness patients and their families. It addresses and integrates the practical, biomedical, social, and spiritual issues typically experienced in day-to-day management. It also includes guidance on conducting team meetings, how to structure care, and proper documentation. Chapters conclude with listings of contemporary references from peer-review literature sources for additional reading. Appendices provide more detailed information on several topics, such as advanced pain control techniques, including ketamine and lidocaine infusion protocols. This book is meant for real-time use, both during team meetings and “at the bedside.” The material in this book will also be helpful to those in other related disciplines, including palliative care, hospitalist practice, geriatrics, emergency medicine, and intensive care.

The feasibility and acceptability of a chaplain-led intervention for caregivers of seriously ill patients: A Caregiver Outlook pilot study

2015 ◽  
Vol 14 (5) ◽  
pp. 456-467 ◽  
Author(s):  
Karen E. Steinhauser ◽  
Annette Olsen ◽  
Kimberly S. Johnson ◽  
Linda L. Sanders ◽  
Maren Olsen ◽  
...  
Keyword(s):  
Study Participant ◽  
Well Being ◽  
Spiritual Needs ◽  
Full Time ◽  
Advanced Illness ◽  
Loved One ◽  
Close Family Member ◽  
Seriously Ill Patients ◽  
Participant Screening ◽  
Anxiety Depression

AbstractObjective:When caring for a loved one with a life-limiting illness, a caregiver's own physical, emotional, and spiritual suffering can be profound. While many interventions focus on physical and emotional well-being, few caregiver interventions address existential and spiritual needs and the meaning that caregivers ascribe to their role. To evaluate the feasibility and acceptability of the process and content of Caregiver Outlook, we employed a manualized chaplain-led intervention to improve well-being by exploring role-related meaning among caregivers of patients with a life-limiting illness.Method:We conducted a single-arm pre–post pilot evaluation among caregivers of patients with advanced cancer or amyotrophic lateral sclerosis (ALS). Caregivers completed three chaplain-led intervention sessions focusing on (1) a relationship review, (2) forgiveness, and (3) legacy. Outcomes administered at baseline and at 1 and 2 weeks after the intervention included quality of life, anxiety, depression, spiritual well-being, religious coping, caregiver burden, and grief.Results:The sample (N = 31) included a range of socioeconomic status groups, and the average age was approximately 60 years. A third of them worked full-time. Some 74% of our participants cared for a spouse or partner, and the other quarter of the sample cared for a parent (13%), child (10%), or other close family member (3%). At baseline, participants did not demonstrate clinical threshold levels of anxiety, depression, or other indicators of distress. Outcomes were stable over time. The qualitative results showed the ways in which Caregiver Outlook was assistive: stepping back from day-to-day tasks, the opportunity to process emotions, reflecting on support received, provoking thoughts and emotions between sessions, discussing role changes, stimulating communication with others, and the anonymity of a phone conversation. Both religious and nonreligious participants were pleased with administration of the chaplain intervention.Significance of results:The acceptability and feasibility of Caregiver Outlook were demonstrated among caregivers of patients with an advanced illness. Our pilot findings suggest minor modifications to study participant screening, interventionist guidance, and the study measures.

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