The Assessment of Quality of life at the End of Life (AQEL) questionnaire: a brief but comprehensive instrument for use in patients with cancer in palliative care

2010 ◽  
Vol 19 (5) ◽  
pp. 739-750 ◽  
Author(s):  
Ingela Henoch ◽  
Bertil Axelsson ◽  
Bengt Bergman
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Patients With Cancer

End-of-Life Care in Non-Cancer Illnesses

2012 ◽  
Vol 5 (6) ◽  
pp. 351-359 ◽  
Author(s):  
Hayley Cousins ◽  
Richard Cassell ◽  
P.-J. Morey
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Specialist Palliative Care ◽  
Patients With Cancer ◽  
Disease Trajectory ◽  
Practical Guidance

End-of-life care is that which is provided to patients experiencing a progressive final decline in their lives, usually with a prognosis of less than a year. End-of-life care in non-cancer illness may be challenging for GPs because of the uncertainty about disease trajectory. Patients with non-cancer illness often experience similar symptoms to patients with cancer but for longer hence with a greater impact on quality of life. Only a minority of such patients need specialist palliative care input so the generalist needs to be confident in assessing, treating and supporting patients and families. This article offers suggestions to overcome the challenges along with practical guidance on managing symptoms in the most common non-cancer illnesses.

Cost effectiveness in palliative care setting

2018 ◽  
Vol 21 (2) ◽  
pp. 62-71
Author(s):  
Henry O’Lawrence ◽  
Rohan Chowlkar
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Hospice Care ◽  
Home Health ◽  
Data Set ◽  
Content Type ◽  
Care Services ◽  
The Cost

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.

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

The Promise of Palliative Care

Pained ◽  
2020 ◽  
pp. 203-206
Author(s):  
Michael D. Stein ◽  
Sandro Galea
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Social Workers ◽  
Hospice Care ◽  
Care Plan ◽  
Life Care ◽  
High Quality ◽  
Life Threatening

This chapter assesses palliative care. Palliative care focuses on improving the quality of life for people with life-threatening illnesses by involving a team of nurses, doctors, social workers, and clergy in a care plan. Hospice care—administered in dedicated units and in services delivered at home—has been slowly expanding over the past two decades, but the increasing percentage of patients who use hospice for less than 7 days suggests that the full benefits of end-of-life palliative care are not being realized. Meanwhile, the use of unwanted, aggressive end-of-life care, often inconsistent with patient preferences, remains pervasive. For palliative care to be effective, it must be supported by government policies and insurer incentives; it must also be owned by communities, which must continue to ask for help in designing and paying for high-quality palliative care for patients and their caregiving families.

Palliative Care in Transplantation

2019 ◽  
pp. 148-162
Author(s):  
Emily B. Rivet ◽  
Jeffrey M. Stern ◽  
Karunasai Mahadevan ◽  
Danielle Noreika
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Organ Failure ◽  
End Of Life ◽  
Waiting Times ◽  
Organ Transplant ◽  
Integrated Approach ◽  
Life Planning ◽  
Transplant Candidates

Organ transplantation is a field where patients often have significant palliative care needs but frequently lack access to palliative care due to a variety of barriers, including some commonly encountered as well as others specific to this patient population. Organ system failure is necessary to qualify for transplantation. Morbidity and mortality of the particular organ failure syndrome have a profound impact on quality of life. Also, the donor process adds another patient group that may benefit from palliative care. For solid-organ transplant candidates, long waiting times on organ transplant lists and limited organ availability shape the patient experience. Death while waiting for transplant for some conditions is not unusual. Furthermore, there is variability in the ability to replace organ function and how these modalities impact quality of life and end-of-life care. An integrated approach introducing end-of-life planning and palliative care early in the course for patients with organ failure awaiting transplant would improve patient knowledge and possibly symptom management and empower patient decision-making at the end of life.

Age, cancer site and gender associations with symptoms and problems in specialised palliative care: a large, nationwide, register-based study

2019 ◽  
pp. bmjspcare-2019-001880 ◽  
Author(s):  
Maiken Bang Hansen ◽  
Lone Ross ◽  
Morten Aagaard Petersen ◽  
Mogens Groenvold
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Physical Function ◽  
Cancer Diagnosis ◽  
Poor Quality ◽  
Cancer Site ◽  
Patients With Cancer ◽  
Increased Risk ◽  
And Gender

BackgroundPatients referred to specialised palliative care are troubled by symptoms/problems, but more knowledge is needed on the level and frequency of symptoms/problems. It is also uncertain how gender, age and cancer diagnosis, respectively, are associated with symptoms/problems.AimsTo describe symptoms/problems in patients with cancer at the start of specialised palliative care, and to study how age, gender and cancer diagnosis were associated with symptoms/problems.DesignA register-based study including data from the Danish Palliative Care Database.Setting/ParticipantsPatients with cancer who reported their symptoms/problems using the European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care (EORTC QLQ-C15-PAL) at the start of specialised palliative care were included. Ordinal logistic regression was performed to test if gender, age and cancer diagnosis were associated with each symptom/problem.Results31 771 patients with cancer were included in the study. The most prevalent and severe symptoms/problems were pain, appetite loss, fatigue, poor physical function and poor quality of life. Gender, age and cancer diagnosis were significantly associated with most symptoms/problems. The strongest associations between symptoms/problems and gender and age, respectively, were increased risk of nausea in women, as well as increased risk of poor physical function and reduced risk of sleeplessness and pain with increasing age. Patients with brain/central nervous system cancer had the lowest risk of symptoms but the highest risk of poor physical function.ConclusionAt the start of specialised palliative care, patients with cancer experience severe levels of symptoms, poor physical function and poor quality of life. Age, gender and diagnosis were significantly associated with most symptoms/problems, but the strength and direction of the associations differed across symptoms/problems.

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.

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