scholarly journals Definitions for “palliative care”, “end-of-life” and “terminally ill” in oncology: a scoping review

2020 ◽  
Vol 9 (2) ◽  
pp. 205-228
Author(s):  
Franciele Roberta Cordeiro ◽  
Stefanie Griebeler Oliveira ◽  
Juliana Zeppini Giudice ◽  
Vanessa Pellegrini Fernandes ◽  
Adriéli Timm Oliveira
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
Web Of Science ◽  
Functional Decline ◽  
Terminally Ill ◽  
Descriptive Statistics ◽  
Quality Of Death ◽  
Clinical Worsening

Objective: to identify and map the definitions for palliative care, end of life, and terminally ill in the oncology literature. Materials and method: scoping review guided by Joanna Brigs Institute recommendations. We analyzed original articles, published between 2012 and 2017, indexed in the databases Pubmed, Web of Science and Scopus. The data collection resulted in 51 articles selected for analysis. Also, we have consulted the websites of 25 palliative care societies from countries best ranked in The Economist’s Quality of Death Ranking. The data were analyzed through descriptive statistics, and summary of the themes, in this case the definitions. Results: terminally ill is a disease with a prognosis of lifetime ranging between hours and months, there is clinical worsening, functional decline, and presence of metastases. Palliative care aims to promote quality of life and dignity. End of life is the period of up to 12 months before death. Conclusions: we constructed synthesis and definitions for the concepts investigated. Thus, it was possible to contribute to the adoption of a standardized language in care and investigations with cancer patients in end-of-life

scholarly journals Quality of Death of Patients With Advanced Cancers in India

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 98s-98s
Author(s):  
S. Revathy ◽  
V. Surendran ◽  
G. Prasanth ◽  
B. Kalpana
Keyword(s):  
Quality Of Life ◽  
Physical Health ◽  
End Of Life ◽  
Advanced Cancer ◽  
Thematic Analysis ◽  
End Of Life Care ◽  
Descriptive Statistics ◽  
Life Care ◽  
Quality Of Death

Background: Death with dignity is a basic right of all patients with advanced cancer, whereas in India, the healthcare providers have not closely examined whether the end-of-life care promotes the quality of death. The quality of death analysis can give us an insight on the impact of the disease and palliative treatment on end-of-life care. Aim: This study aims to explore the quality of death of patients with advanced cancers. Methods: A mixed method study where the caregivers (n=108) of advanced cancer patients, who expired either during hospitalization or at home, were chosen through purposive sampling and interviewed to assess the quality of death, using validated caregiver ratings of patients' physical and mental distress on a scale of 0-10, along with an open ended question. The data thus obtained was analyzed using descriptive statistics, t-test and χ2 test. The transcripts and scores were analyzed through thematic analysis and descriptive statistics respectively. Results: The mean quality of life during the final week of the patients who had expired is 4.17 (SD=2.44), while the psychological and physical health are 5.27 (SD= 2.49) and 3.75 (SD= 2.30), respectively. Almost 60% of the patients were reported to have average to good quality of life during their final week, whereas 73.1% and 52.7% of the patients had average to good psychological and physical health respectively. The physical health was found to be significantly higher among men ( P = 0.000) and among those who were aware of their prognosis ( P = 0.000). Also, patients who had expired at the hospital were found to have significantly better physical health during their end-of-life, than those who had expired at home ( P = 0.006 ), whereas, the psychological health and overall quality of life of the patients did not differ significantly between the place of death. The most commonly reported reason by the caregivers for the patients' distress was physical suffering. Pain, lack of appetite, difficulty in breathing and compromised mobility, irrespective of the site, was reported by 41.6%, 38.8%, 25.9% and 27.7% respectively. Majority of the patients (65.7%) were not aware of their prognosis, thus leading to psychological distress pertaining to anticipation about survival and worsening of physical symptoms. Despite the high distress, 60% reportedly had moderate to high quality of life in their last week of life. The thematic analysis of the transcripts resulted in seven subthemes, which were categorized under four major themes namely 'bodily discomfort', 'psychological experiences' with the subthemes moral emotions and emotional disturbances, 'awareness of prognosis' with the subthemes aware, unaware and conjecture and 'carers coping' with the subthemes perceived strain and contentment. Conclusion: Although the quality of life of patients under end of life care was perceived to be good, they suffered physically and psychologically, as reported by the caregivers.

Place of Death and the Differences in Patient Quality of Death and Dying and Caregiver Burden

2015 ◽  
Vol 33 (4) ◽  
pp. 357-363 ◽  
Author(s):  
Hiroya Kinoshita ◽  
Isseki Maeda ◽  
Tatsuya Morita ◽  
Mitsunori Miyashita ◽  
Akemi Yamagishi ◽  
...  
Keyword(s):  
Palliative Care ◽  
Caregiver Burden ◽  
Death And Dying ◽  
Terminally Ill ◽  
Place Of Death ◽  
Good Death ◽  
Patients With Cancer ◽  
Quality Of Death ◽  
Palliative Care Units

Purpose To explore the associations between place of death and quality of death and dying and caregiver burden in terminally ill patients with cancer and their families. Methods Two bereavement surveys were conducted in October 2008 and October 2011. A total of 2,247 family caregivers of patients with cancer who were deceased responded to the mail surveys (response rate, 67%). Family members reported patient quality of death and dying and caregiver burden by using the Good Death Inventory and Caregiving Consequences Inventory. Results Patient quality of death and dying was significantly higher at home relative to other places of dying after adjustment for patient and/or family characteristics (adjusted means): 5.0 (95% CI, 4.9 to 5.2) for home, 4.6 (95% CI, 4.5 to 4.7) for palliative care units, and 4.3 (95% CI, 4.2 to 4.4) for hospitals. For all combinations, pairwise P < .001; the size of the difference between home and hospital was moderate (Hedges' g, 0.45). Home was superior to palliative care units or hospitals with respect to “dying in a favorite place,” “good relationships with medical staff,” “good relationships with family,” and “maintaining hope and pleasure” (P < .001 for all combinations of home v palliative care units and home v hospitals). Home death was significantly associated with a lower overall (P = .03) and financial caregiver burden (P = .004) relative to hospital death. Conclusion Dying at home may contribute to achieving good death in terminally ill patients with cancer without causing remarkably increased caregiver burden. Place of death should be regarded as an essential goal in end-of-life care.

Hypodermoclysis as a Strategy for Patients With End-of-Life Cancer in Home Care Settings

2020 ◽  
Vol 37 (9) ◽  
pp. 675-682 ◽  
Author(s):  
Tatiana A. Coelho ◽  
Alberto J. A. Wainstein ◽  
Ana P. Drummond-Lage
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
End Of Life ◽  
Care Setting ◽  
Place Of Death ◽  
Quality Of Death ◽  
Belo Horizonte ◽  
The Impact ◽  
At Home

Background: The increase in the elderly population associated with a higher incidence of cancer strongly endorses palliative care (PC). Hypodermoclysis (HDC) is a feasible technique for drugs and fluids delivery at the home care setting. Objectives: To assess the use and benefits of HDC in patients with end-of-life cancer assisted by a single home-based palliative care program (HPCP) in Belo Horizonte, Brazil. Methods: This was a retrospective study that analyzed medical charts from patients with end-of-life cancer who were assisted by an HPCP in a 1-year period of time. Results: A total of 333 patients, 81.7% with advanced cancer, were included. The most frequent symptoms were fatigue (44.4%) and pain (43.2%). Hypodermoclysis was used in 77.5% of the patients for the administration of fluids or medicines. Continuous palliative sedation was applied to 70.5% of patients. The place of death was home for 90.2% of the patients. Conclusion: Receiving home care assistance with palliative intention may decrease the need for dying patients with cancer to visit emergency units, as their symptoms were well controlled. Hypodermoclysis was a safe and effective alternative for hydration and drug delivery when provided and supervised by an experienced team. The place of death is a reliable indicator of the quality of death, and, in this study, the HPCP allowed patients to die at home with their families. It is essential for PC professionals to understand the impact of HDC use at home care setting for patients with end-of-life cancer allowing the increase of quality of death indicators.

scholarly journals 411 - Palliative Care in Dutch Green Care Farms and Innovative Small-Scale Living Facilities

2021 ◽  
Vol 33 (S1) ◽  
pp. 36-36
Author(s):  
Brittany DeGraves ◽  
Judith Meijers ◽  
Carole Estabrooks ◽  
Hilde Verbeek
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
The Netherlands ◽  
End Of Life ◽  
Scoping Review ◽  
Small Scale ◽  
Term Care ◽  
Preliminary Results ◽  
Green Care Farms

Background:Dutch Green Care Farms and innovative small-scale facilities for residents with dementia focus on promoting resident abilities and engaging residents in activities to maintain resident quality of life up until death. Palliative care approaches are needed in these innovative facilities to maintain quality of life and quality of care. To our knowledge, there are currently no literature reviews discussing palliative care in these facilities or exploring palliative care in Green Care Farms in the Netherlands.Research Objectives:To identify current palliative care approaches at innovative small-scale facilities and Dutch Green Care Farms for residents with dementia.Methods:This two-part study includes a scoping review focused on identifying research regarding palliative care approaches in innovative small-scale facilities. Thematic analysis based on van der Steen et al.’s (2014) domains for palliative care in dementia were used to analyze the final papers included in the review. The second part of the study included qualitative semi-structured interviews of six managers and two front-line caregivers at five care farms in the Netherlands in 2019 focused on palliative care approaches in their facilities.Preliminary Results of Ongoing Study:Eight papers were included in our final scoping review. Most facilities in these papers focused on maximizing comfort and the residents remaining abilities at end-of- life while providing person and family-centred care. Similar findings were seen in the preliminary results of the interviews, which indicate that all farms use palliative care approaches while maximizing physical and psychological functioning and engagement in activities. Care farms also reported promoting family involvement, preventing hospitalizations, and ensuring family and resident involvement in decision- making at the end-of-life.Conclusion:By providing palliative care approaches, innovative facilities provide a home for life and improved quality of life for residents up until death. Innovative small-scale facilities including green care farms prioritize resident autonomy and choice, minimizing discomfort and family-centred care at the end-of-life. Additional research surrounding barriers to palliative care, quality of end-of-life care, and comparisons of innovative facilities to traditional long-term care homes are needed to have a more comprehensive picture of palliative care in these innovative facilities.

Happiness at the end of life: A qualitative study

2021 ◽  
pp. 1-7
Author(s):  
Tan Seng Beng ◽  
Wong Ka Ghee ◽  
Ng Yun Hui ◽  
Ooi Chieh Yin ◽  
Khoo Wei Shen Kelvin ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
Terminal Illness ◽  
Terminally Ill ◽  
Social Connections ◽  
Targeted Interventions ◽  
Pain And Suffering ◽  
The University ◽  
Eudaimonic Happiness

Abstract Objective Dying is mostly seen as a dreadful event, never a happy experience. Yet, as palliative care physicians, we have seen so many patients who remained happy despite facing death. Hence, we conducted this qualitative study to explore happiness in palliative care patients at the University of Malaya Medical Centre. Method Twenty terminally ill patients were interviewed with semi-structured questions. The results were thematically analyzed. Results Eight themes were generated: the meaning of happiness, connections, mindset, pleasure, health, faith, wealth, and work. Our results showed that happiness is possible at the end of life. Happiness can coexist with pain and suffering. Social connections were the most important element of happiness at the end of life. Wealth and work were given the least emphasis. From the descriptions of our patients, we recognized a tendency for the degree of importance to shift from the hedonic happiness to eudaimonic happiness as patients experienced a terminal illness. Significance of results To increase the happiness of palliative care patients, it is crucial to assess the meaning of happiness for each patient and the degree of importance for each happiness domain to allow targeted interventions.

Hospital end-of-life care: families’ free-text notes

2020 ◽  
pp. bmjspcare-2020-00239
Author(s):  
Sandra Kurkowski ◽  
Johannes Radon ◽  
Annika R Vogt ◽  
Martin Weber ◽  
Stephanie Stiel ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Of Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Free Text ◽  
Life Care ◽  
Quality Aspects ◽  
Care Of The Dying

BackgroundPalliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.AimTo identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.DesignWithin the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.Setting/participantsLoved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.Results993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.ConclusionsIt is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.Trial registration numberThis study was registered at the German Clinical Trials Register (DRKS00013916).

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.

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