scholarly journals Healing at the End of Life: The Voice of the Patient

2014 ◽  
Vol 1 (1) ◽  
Author(s):  
Cory Ingram

In palliative care we have the privilege to care for seriously ill people and their families. Some people value capturing their life story or illness journey on film. I have been fortunate to have been invited into the lives of many people close the end of life for a heartfelt conversation.On an interactive iPad incorporated in the poster, the recorded narrative of patients and one bereft spouse the poster audience will experience the lived experience of people close to the end of life as they reflect on their lives. The narratives will demonstrate how each lived with a new found improved quality of life in the face of increasing symptoms, declining functioning and the approaching end of life; otherwise known as healing. Topics of healing and quality of life, patient-centered care, dignity, human development, spirituality and love will be the focus of their stories. The stories lay bare the very practical, emotional, existential, and personal experience central to our provision of whole person care through palliative care. The poster audience will experience a renewed sense of the impact of a dedicated approach to whole person care as experienced through those on the receiving end.

Author(s):  
Maria Elena Iriarte Moncho ◽  
Vicente Palomar-Abril ◽  
Teresa Soria-Comes

Introduction: Advanced cancer is accompanied by a substantial burden of symptoms, and palliative care (PC) plays an essential role, especially at the end of life (EOL). In fact, a comprehensive PC through Home Palliative Care Units (HPCU) has been associated with reducing potentially aggressive care at the EOL. We aim to study the impact of HPCU on the quality of assistance of cancer patients at Alcoy Health Department. Methods: A retrospective study was conducted including patients diagnosed with terminal cancer at the Medical Department of Hospital Virgen de los Lirios who died between January 2017 and December 2018. The Multivariate Cox regression model was used to assess the impact of HPCU assistance on the quality of life indicators. Results: 388 patients were included. The median age was 71 years; 65% patients were male, and 68% presented with a 0-2 score on the ECOG scale. On the multivariate analysis, a lack of assistance by HPCU was associated with a higher risk of consulting in the emergency department (OR = 1.29, 95% CI: 1.02-1.67), of hospital admissions (OR = 4.72, 95% CI: 2.45-9.09), a higher probability of continuing active treatment (OR = 2.59, 95% CI: 1.44-4.67), and a greater probability of dying in hospital (OR = 6.52, 95% CI: 3.78-11.27). Conclusions: Patients receiving HPCU assistance have a lower number of emergency room visits and hospital admissions, and are more likely to die at home. Taken together, these results support the relevance of HPCU providing a high quality attention of cancer patients.


Author(s):  
Elizabeth M. Miller ◽  
Joanne E. Porter ◽  
Michael S. Barbagallo

Aim: To review the latest qualitative literature on how the physical hospital environment affects palliative patients and their families. Background: People with a life-limiting illness may receive palliative care to improve their quality of life in hospital and may have multiple admissions as their illness progresses. Yet, despite a preference for a death at home, more than half of the dying population will receive end-of-life care in hospital. The physical hospital environment consists of ambiance, aesthetics, and architectural factors, and it is well known that the hospital’s acute wards are not a homely environment. Demand is increasing for the physical environment to be improved to better meet the needs and demands of palliative and end-of-life patients and their families. Method: Combining thematic analysis and meta-ethnography methodologies, 12 international qualitative papers were analyzed and synthesized by the three authors. Results: Findings resulted in the development of the SSAFeR Place approach that incorporates the concepts that are important to palliative and end-of-life patients and their families by describing an environment within the acute or palliative care units that feels safe, is private, customizable, and accommodates family; is a space to share with others, is homelike in ambiance and aesthetics, and is conducive for reflection. The concepts of identity, belonging, and safety are connected to the notions of home. Conclusions: To provide person-centered care and to move the focus toward the palliative approach of comfort and quality of life, attention to room size, layout, aesthetics, and ambiance is needed.


2018 ◽  
pp. 491-507
Author(s):  
Julie Katseres ◽  
William E. Rosa

Contrary to popular belief, palliative care, or hospice, is not withdrawing care but rather shifting the focus from curing disease and illness to a journey of living with disease/illness, optimizing quality of life, while at the same time finding value and meaning in the transitions toward conscious dying—guiding the sacred passage. The purpose of this chapter is to disarm the fear and discomfort around illness and death through exploring integrative nursing principles that guide palliative and end-of-life care and by reframing how care is delivered during these crucial moments, inviting an ethic of evolving human-centered care with nurse as the primary healing instrument.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 17-17
Author(s):  
Yifan Lou ◽  
Nan Jiang ◽  
Katherine Ornstein

Abstract Background: Quality of life (QoL) during last stage of life has raised expanded interests as an important aspect of person-centered care. Last place of care (LPC), refer to the last place decedents received their formal end-of-life care (EOLC), has been identified as a key indicator of older adults’ end-of-life QoL, but the relationship was understudied. This study explores the association between LPC and end-of-life QoL among American older adults. Methods: Data used seven waves of Last Month of Life data with a total sample of 3068 Medicare decedents in NHATS. Outcome is end-of-life QoL assessed by eleven measures on four domains: pain and symptoms management (SP), quality of healthcare encounter (HE), person-centered care (PC), and overall quality of care (QC). LPC was categorized into home, hospital, nursing home, and residential hospice. Multivariate logistic regression analyses were used to examine the relationship with covariates. Results: LPC varied by most demographic characteristics, except immigration status and education. Older adults whose LPC is hospital, compared to those who had home-care, were less likely to have great experiences on HE, PC, and QC. People dying at nursing homes are more likely to receive care meeting their dyspnea and spiritual needs. Residential hospice is negatively related to respected care, clear coordination, and keeping family informed, but are more likely to provide PS and spiritual care. Discussion: Home-based end-of-life care has certain advantages but still has room to improve on SP and religious concerns. Hospitals should keep reforming their service delivery structure to improve patients’ QoL.


2018 ◽  
Vol 21 (2) ◽  
pp. 62-71
Author(s):  
Henry O’Lawrence ◽  
Rohan Chowlkar

Purpose The purpose of this paper is to determine the cost effectiveness of palliative care on patients in a home health and hospice setting. Secondary data set was utilized to test the hypotheses of this study. Home health care and hospice care services have the potential to avert hospital admissions in patients requiring palliative care, which significantly affects medicare spending. With the aging population, it has become evident that demand of palliative care will increase four-fold. It was determined that current spending on end-of-life care is radically emptying medicare funds and fiscally weakening numerous families who have patients under palliative care during life-threatening illnesses. The study found that a majority of people registering for palliative and hospice care settings are above the age group of 55 years old. Design/methodology/approach Different variables like length of stay, mode of payment and disease diagnosis were used to filter the available data set. Secondary data were utilized to test the hypothesis of this study. There are very few studies on hospice and palliative care services and no study focuses on the cost associated with this care. Since a very large number of the USA, population is turning 65 and over, it is very important to analyze the cost of care for palliative and hospice care. For the purpose of this analysis, data were utilized from the National Home and Hospice Care Survey (NHHCS), which has been conducted periodically by the Centers for Disease Control and Prevention’s National Center for Health Statistics. Descriptive statistics, χ2 tests and t-tests were used to test for statistical significance at the p<0.05 level. Findings The Statistical Package for Social Sciences (SPSS) was utilized for this result. H1 predicted that patients in the age group of 65 years and up have the highest utilization of home and hospice care. This study examined various demographic variables in hospice and home health care which may help to evaluate the cost of care and the modes of payments. This section of the result presents the descriptive analysis of dependent, independent and covariate variables that provide the overall national estimates on differences in use of home and hospice care in various age groups and sex. Research limitations/implications The data set used was from the 2007 NHHCS survey, no data have been collected thereafter, and therefore, gap in data analysis may give inaccurate findings. To compensate for this gap in the data set, recent studies were reviewed which analyzed cost in palliative care in the USA. There has been a lack of evidence to prove the cost savings and improved quality of life in palliative/hospice care. There is a need for new research on the various cost factors affecting palliative care services as well as considering the quality of life. Although, it is evident that palliative care treatment is less expensive as compared to the regular care, since it eliminates the direct hospitalization cost, but there is inadequate research to prove that it improves the quality of life. A detailed research is required considering the additional cost incurred in palliative/hospice care services and a cost-benefit analysis of the same. Practical implications While various studies reporting information applicable to the expenses and effect of family caregiving toward the end-of-life were distinguished, none of the previous research discussed this issue as their central focus. Most studies addressed more extensive financial effect of palliative and end-of-life care, including expenses borne by the patients themselves, the medicinal services framework and safety net providers or beneficent/willful suppliers. This shows a significant hole in the current writing. Social implications With the aging population, it has become evident that demand of palliative/hospice care will increase four-fold. The NHHCS have stopped keeping track of the palliative care requirements after 2007, which has a negative impact on the growing needs. Cost analysis can only be performed by analyzing existing data. This review has recognized a huge niche in the evidence base with respect to the cost cares of giving care and supporting a relative inside a palliative/hospice care setting. Originality/value The study exhibited that cost diminishments in aggressive medications can take care of the expenses of palliative/hospice care services. The issue of evaluating result in such a physically measurable way is complicated by the impalpable nature of large portions of the individual components of outcome. Although physical and mental well-being can be evaluated to a certain degree, it is significantly more difficult to gauge in a quantifiable way, the social and profound measurements of care that help fundamentally to general quality of care.


2021 ◽  
Author(s):  
Johanna Sommer ◽  
Christopher Chung ◽  
Dagmar M. Haller ◽  
Sophie Pautex

Abstract Background: Patients suffering from advanced cancer often loose contact with their primary care physician (PCP) during oncologic treatment and palliative care is introduced very late.The aim of this pilot study was to test the feasibility and procedures for a randomized trial of an intervention to teach PCPs a palliative care approach and communication skills to improve advanced cancer patients’ quality of life. Methods: Observational pilot study in 5 steps. 1) Recruitment of PCPs. 2) Intervention: training on palliative care competencies and communication skills addressing end-of-life issues.3) Recruitment of advanced cancer patients by PCPs. 4) Patients follow-up by PCPs, and assessment of their quality of life by a research assistant 5) Feedback from PCPs using a semi-structured focus group and three individual interviews with qualitative deductive theme analysis.Results: 8 PCPs were trained. PCPs failed to recruit patients for fear of imposing additional loads on their patients. PCPs changed their approach of advanced cancer patients. They became more conscious of their role and responsibility during oncologic treatments and felt empowered to take a more active role picking up patient’s cues and addressing advance directives. They developed interprofessional collaborations for advance care planning. Overall, they discovered the role to help patients to make decisions for a better end-of-life.Conclusions: PCPs failed to recruit advanced cancer patients, but reported a change in paradigm about palliative care. They moved from a focus on helping patients to die better, to a new role helping patients to define the conditions for a better end-of-life.Trial registration : The ethics committee of the canton of Geneva approved the study (2018-00077 Pilot Study) in accordance with the Declaration of Helsinki


2021 ◽  
Author(s):  
Simon Renner ◽  
Tom Marty ◽  
Mickaïl Khadhar ◽  
Pierre Foulquié ◽  
Paméla Voillot ◽  
...  

BACKGROUND Monitoring social media has been shown to be a useful mean to capture patients’ opinions and feelings about medical issues, ranging from diseases to treatments. Health-related quality of life is a useful indicator of overall patients’ health that can be captured online. OBJECTIVE This study aims to describe a Social Media Listening system which is able to detect any impact of diseases or treatments on health-related quality of life as reported in social media and forum messages written by patients. METHODS Using a web crawler, 19 health-related forums in France were harvested and messages relating a patient’s experience with a disease or a treatment were specifically collected. The algorithm was based on the two clinically validated questionnaires SF-36 and EQ-5D. Models were trained using cross-validation (a machine learning technique which obtains the best combination between different data samples) and hyperparameter optimization. Over-sampling was used to increase the infrequent dimension: after annotation, SMOTE was used to balance the proportion of the dimension among messages. RESULTS The training set was composed of 1400 messages, randomly taken from a 20 000 batch of health-related messages coming from forums. The algorithm was able to detect a general impact on health-related quality of life (sensitivity of 0.83 and specificity of 0.74), a physical impact (0.67 and 0.76), a psychic impact (0.82 and 0.60), an activity-related impact (0.73 and 0.78), a relational impact (0.73 and 0.70) and a financial impact (0.79 and 0.74). CONCLUSIONS Real-time assessment of patients’ health-related quality of life through the use of Social Media Listening is useful to a patient-centered medical care. Social media as a source of Real World Data are a complementary point of vue to understand patients’ concerns, unmet needs and how diseases and treatments can be a burden in their daily lives. Trial Registration: Not applicable (not a trial)


Sign in / Sign up

Export Citation Format

Share Document