Attending to the Quality of Life at the End of Life. Palliative Rehabilitation Is Person-Centered Care for Patients With Advanced Cancer

2019 ◽  
pp. 161-175
Author(s):  
Martin R. Chasen ◽  
Ravi Bhargava ◽  
Gary Goldberg
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Advanced Cancer ◽  
Person Centered Care ◽  
Centered Care

scholarly journals Last Place of Care and End-of-Life Quality of Life in the United States: Evidence From a National Representative Data Set

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 17-17
Author(s):  
Yifan Lou ◽  
Nan Jiang ◽  
Katherine Ornstein
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
End Of Life ◽  
End Of Life Care ◽  
The United States ◽  
Life Care ◽  
Person Centered Care ◽  
Centered Care ◽  
The Relationship

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.

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

2014 ◽  
Vol 1 (1) ◽  
Author(s):  
Cory Ingram
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Lived Experience ◽  
End Of Life ◽  
Life Story ◽  
Patient Centered ◽  
Whole Person ◽  
Centered Care ◽  
The Impact

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.

scholarly journals Shifting Palliative Care Paradigm in Primary Care From Better Death to Better End-of-Life : A Swiss Pilot Study

2021 ◽  
Author(s):  
Johanna Sommer ◽  
Christopher Chung ◽  
Dagmar M. Haller ◽  
Sophie Pautex
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Palliative Care ◽  
Pilot Study ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Communication Skills ◽  
Advanced Cancer Patients

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

scholarly journals Chemotherapy use and quality of life in cancer patients at the end of life: an integrative review

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Elham Akhlaghi ◽  
Rebecca H. Lehto ◽  
Mohsen Torabikhah ◽  
Hamid Sharif Nia ◽  
Ahmad Taheri ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Palliative Chemotherapy ◽  
Palliative Therapy ◽  
Related Quality ◽  
Health Related

Abstract Background When curative treatments are no longer available for cancer patients, the aim of treatment is palliative. The emphasis of palliative care is on optimizing quality of life and provided support for patients nearing end of life. However, chemotherapy is often offered as a palliative therapy for patients with advanced cancer nearing death. The purpose of this review was to evaluate the state of the science relative to use of palliative chemotherapy and maintenance of quality of life in patients with advanced cancer who were at end of life. Materials and methods Published research from January 2010 to December 2019 was reviewed using PRISMA guidelines using PubMed, Proquest, ISI web of science, Science Direct, and Scopus databases. MeSH keywords including quality of life, health related quality of life, cancer chemotherapy, drug therapy, end of life care, palliative care, palliative therapy, and palliative treatment. Findings 13 studies were evaluated based on inclusion criteria. Most of these studies identified that reduced quality of life was associated with receipt of palliative chemotherapy in patients with advanced cancer at the end of life. Conclusion Studies have primarily been conducted in European and American countries. Cultural background of patients may impact quality of life at end of life. More research is needed in developing countries including Mideastern and Asian countries.

Quality of life, depression, and end-of-life outcomes in hospitalized patients with advanced cancer.

2015 ◽  
Vol 33 (15_suppl) ◽  
pp. 9525-9525
Author(s):  
Kathryn Elizabeth Hudson ◽  
Steven Paul Wolf ◽  
Amy Pickar Abernethy ◽  
Thomas William LeBlanc
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Advanced Cancer ◽  
Hospitalized Patients ◽  
Life Outcomes

scholarly journals Assessing the need for a question prompt list that encourages end-of-life discussions between patients with advanced cancer and their physicians: A focus group interview study

2021 ◽  
pp. 1-6
Author(s):  
Ayako Sato ◽  
Maiko Fujimori ◽  
Yuki Shirai ◽  
Shino Umezawa ◽  
Masanori Mori ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Focus Group ◽  
Cancer Treatment ◽  
End Of Life ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Question Prompt List ◽  
Question Prompt ◽  
Active Cancer

Abstract Objective Early integration of palliative and cancer care improves the quality of life and is facilitated by discussions about the end of life after cessation of active cancer treatment between patients with advanced cancer and their physicians. However, both patients and physicians find end-of-life discussions challenging. The aim of this study was to assess the need for a question prompt list (QPL) that encourages end-of-life discussions between patients with advanced cancer and their physicians. Methods Focus group interviews (FGIs) were conducted with 18 participants comprising 5 pancreatic cancer patients, 3 family caregivers, 4 bereaved family members, and 6 physicians. Three themes were discussed: question items that should be included in the QPL that encourages end-of-life discussions with patients, family caregivers, and physicians after cessation of active cancer treatment; when the QPL should be provided; and who should provide the QPL. Each interview was audio-recorded, and content analysis was performed. Results The following 9 categories, with 57 question items, emerged from the FGIs: (1) preparing for the end of life, (2) treatment decision-making, (3) current and future quality of life, (4) current and future symptom management, (5) information on the transition to palliative care services, (6) coping with cancer, (7) caregivers’ role, (8) psychological care, and (9) continuity of cancer care. Participants felt that the physician in charge of the patient's care and other medical staff should provide the QPL early during active cancer treatment. Significance of results Data were collected to develop a QPL that encourages end-of-life discussions between patients with advanced cancer and their physicians.

scholarly journals Bridging Biomedical and Person-centered Care Approaches via Namaste Care with Family Participation: An Asian Experience in Advanced Dementia Treatment

2020 ◽  
Vol 4 (4) ◽  
Author(s):  
Noorhazlina Ali ◽  
◽  
Cai Ning Tan ◽  
Jasmine Kang ◽  
Aik Phon Chew ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Rating Scale ◽  
Tube Feeding ◽  
Cognitive Status ◽  
Dementia Care ◽  
Family Participation ◽  
Advanced Dementia ◽  
Person Centered Care ◽  
Centered Care

A locally-adapted, multisensory, psychosocial intervention called Namaste Care program was developed to improve the daily life of persons with advanced dementia (PwAD) through arranging meaningful activities and physical interactions by healthcare staff (Namaste Carers). Congruent with Asian values, the families of PwAD were invited to participate in Namaste Care sessions. The study aimed to explore the influence of Namaste Care on cognitive status and quality of life (QOL) of PwAD, and perceptions and attitudes of caregivers and Namaste Carers toward dementia care were determined. A total of 10 individuals, including patient-caregiver dyads (n = 4) and Namaste Carers (n = 6) participated in a program in a tertiary hospital in Singapore. Quality of Life in Late-Stage Dementia (QUALID) scale and Severe Impairment Rating Scale (SIRS) were employed to evaluate QOL and cognition, respectively, in the pre- and post-survey program in patient-caregiver dyads. Namaste Carers’ knowledge and attitudes toward PwAD were assessed using the Questionnaire on Palliative Care for Advanced Dementia (qPAD). Caregivers and Namaste carers were interviewed post-program separately. A concurrent explanatory mixed-method analysis was done. The mean age of PwAD was 84 years, with 75% (n = 3) patients on enteral tube feeding. Namaste carers were nurses with an average experience of 4.1 years in dementia care. On comparison of pre- and post-program scores of PwAD, QUALID scores showed a decrease (indicating an improvement in the QOL), while the SIRS scores were increased (indicating an improved cognitive response). Namaste Carers scored high on qPAD, reflecting the good understanding and a positive attitude toward PwAD. Thematic analysis of 10 interview transcripts from caregivers and Namaste Carers revealed three themes: the polarizing paradigm of care in advanced dementia; pre-eminence of the Asian family values, and theme of “small actions make a big difference”. Namaste Care served as a bridge between the person-centered care approach and the biomedical model of dementia care. Namaste Care with family participation may be the cornerstone of PwAD to receive culturally-appropriate personalized care and serve as a premise for the operationalization of person-centered care in Asian societies, and undeniably across the world.

Outcomes Associated with End-of-Life Discussions (DRAFT)

2018 ◽  
Author(s):  
Masanori Mori
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Care Planning ◽  
Advanced Cancer Patients ◽  
Advance Care ◽  
Aggressive Care

Physicians and advanced cancer patients are often reluctant to talk about death. They frequently avoid end-of-life discussions (EOLds), although such conversations are essential to initiate advance care planning. In this prospective, a longitudinal multisite cohort study of advanced cancer patients and their informal caregivers, the authors suggested cascading benefits of EOLds between patients and their physicians. In total, 123 of 332 (37.0%) patients reported having EOLds with their physicians at baseline. EOLds were not associated with higher rates of emotional distress or psychiatric disorders. Instead, after propensity-score weighted adjustment, EOLds were associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care was associated with worse patient quality of life and worse bereavement adjustment. These findings may help destigmatize EOLds and assist physicians and patients in initiating such conversations and engaging in advance care planning.

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