Palliative care and quality of life for people with dementia: medical and psychosocial interventions

2015 ◽  
Vol 27 (10) ◽  
pp. 1623-1634 ◽  
Author(s):  
Ladislav Volicer ◽  
Joyce Simard

ABSTRACTBackground:Despite mounting evidence that principles of palliative care are appropriate in care for individuals with dementia they are often not applied. As a result, patients with dementia are often exposed to burdensome interventions that have little or no benefit and are not provided with psychosocial treatments.Methods:Recommendations for applying palliative care principles in caring for people with dementia are provided, based on the WHO definition of palliative care, our clinical experience and some key literature reports.Results:People with a diagnosis of an irreversible dementia such as Alzheimer's disease (AD) and their families are rarely informed that this is a terminal disease and palliative care principles are not discussed with them. They are applicable early in the course of illness when the person can still make end-of-life decisions. Palliative care can be used in conjunction with other therapies and services, such as hospice care that provide relief from pain and other distressing symptoms. The care should include keeping people with dementia involved in meaningful activities which decrease or eliminate behavioral symptoms of dementia.Conclusions:Educating families and professionals about palliative care is important as many professionals and non-professionals believe that this approach intends to hasten death, instead of affirming life and regarding dying as a normal process. Living, not just existing, with a dementing illness involves encouraging the person to continue to be involved in meaningful activities. Medical interventions should be compatible with goals of care and balance benefits and burdens for each intervention taking into consideration severity of dementia.

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.


2019 ◽  
Vol 72 (7) ◽  
pp. 1229-1235
Author(s):  
Ewa Kucharska ◽  
Aleksandra Kucharska ◽  
Aleksander Sieroń ◽  
Mariusz Nowakowski ◽  
Karolina Sieroń

The palliative care patient is definitely a unique type of patient. Due to the complexity of the symptoms requires a holistic therapeutic approach. Modern methods of treatment in palliative and hospice care underline an important role of physio, kinesiotherapy and pharmacological treatment coexistence. The rehabilitation reduces clinical symptoms, accompanying the basic disease and increases the quality of life of palliative patients and their families. It becomes an inseparable element of treatment, both in outpatient care as well as in stationary care and home care. Due to the high dynamics onset of cancer in the group of geriatric patients there is a need for a broader analysis of the topic. The goal of palliative care is to achieve the best possible quality of life for patients and their families.


2018 ◽  
Vol 23 (3) ◽  
pp. 196-207 ◽  
Author(s):  
Jane Dalton ◽  
Sian Thomas ◽  
Melissa Harden ◽  
Alison Eastwood ◽  
Gillian Parker

Objective To update a 2010 meta-review of systematic reviews of effective interventions to support carers of ill, disabled, or older adults. In this article, we report the most promising interventions based on the best available evidence. Methods Rapid meta-review of systematic reviews published from January 2009 to 2016. Results Sixty-one systematic reviews were included (27 high quality, 25 medium quality, and nine low quality). The quality of reviews has improved since the original review, but primary studies remain limited in quality and quantity. Fourteen high quality reviews focused on carers of people with dementia, four on carers of those with cancer, four on carers of people with stroke, three on carers of those at the end of life with various conditions, and two on carers of people with mental health problems. Multicomponent interventions featured prominently, emphasizing psychosocial or psychoeducational content, education and training. Improved outcomes for carers were reported for mental health, burden and stress, and wellbeing or quality of life. Negative effects were reported in reviews of respite care. As with earlier work, we found little robust evidence on the cost-effectiveness of reviewed interventions. Conclusions There is no ‘one size fits all’ intervention to support carers. There is potential for effective support in specific groups of carers, such as shared learning, cognitive reframing, meditation, and computer-delivered psychosocial support for carers of people with dementia. For carers of people with cancer, effective support may include psychosocial interventions, art therapy, and counselling. Carers of people with stroke may also benefit from counselling. More good quality, theory-based, primary research is needed.


Pained ◽  
2020 ◽  
pp. 203-206
Author(s):  
Michael D. Stein ◽  
Sandro Galea

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.


1993 ◽  
Vol 9 (1) ◽  
pp. 37-41 ◽  
Author(s):  
David M. Dush

The hospice movement grew in part as a reaction to the perception that modern medical care had become too technological at the expense of being impersonal and insensitive to human psychological and spiritual concerns. In the United States, the institutionalization of hospice care under Medicare and other reimbursement systems has further established hospice as an alternative to high-technology, high-cost care. The present paper examines the question: What if hospice care becomes itself high-technology, aggressive, costly health care in order to remain true to its goal of maximizing quality of life? Implications for the goals and philosophical underpinnings of palliative care are discussed.


Author(s):  
LaVera Crawley ◽  
Jonathan Koffman

This chapter attempts to identify ‘differences that make a difference’ when individuals and groups negotiate institutions and practices for palliative and end-of-life care. Two influences on the practice of palliative care-immigration and health disparities-are examined. The World Health Organization definition of palliative care specifies two goals: improving quality of life of patients and families and preventing and relieving suffering. It identifies three ‘colour blind’ strategies for meeting those goals: early identification, impeccable assessment, and (appropriate) treatment. Lastly, the definition addresses four domains of care: (1) problems related to pain, (2) physical conditions, (3) the psychosocial, (4) and the spiritual. This chapter specifically addresses these goals, strategies, and domains in relation to delivering quality palliative care in cross- or multicultural settings.


2020 ◽  
Vol 8 (2) ◽  
pp. 20
Author(s):  
Lorna K Fraser ◽  
Myra Bluebond-Langner ◽  
Julie Ling

Advances in both public health and medical interventions have resulted in a reduction in childhood mortality worldwide over the last few decades; however, children still have life-threatening conditions that require palliative care. Children’s palliative care is a specialty that differs from palliative care for adults in many ways. This paper discusses some of the challenges, and some of the recent advances in paediatric palliative care. Developing responsive services requires good epidemiological data, as well as a clarity on services currently available and a robust definition of the group of children who would benefit from palliative care. Once a child is diagnosed with a life-limiting condition or life-limiting illness, parents face a number of complex and difficult decisions; not only about care and treatment, but also about the place of care and ultimately, place of death. The best way to address the needs of children requiring palliative care and their families is complex and requires further research and the routine collection of high-quality data. Although research in children’s palliative care has dramatically increased, there is still a dearth of evidence on key components of palliative care notably decision making, communication and pain and symptom management specifically as it relates to children. This evidence is required in order to ensure that the care that these children and their families require is delivered.


2019 ◽  
Vol 17 (3.5) ◽  
pp. HSR19-089
Author(s):  
Sara Hayes ◽  
Brian M. Green ◽  
Shayna Yeates ◽  
Amrita Bhowmick ◽  
Kaitlyn McNamara ◽  
...  

Background: Despite NCCN Guidelines and clear definition of palliative care, patients often carry misperceptions about palliative care and how it can be beneficially integrated into a patient’s care plan. In order to better understand the misinformation about palliative and hospice care, this study aims to assess patient-healthcare provider (HCP) communication regarding treatment decisions. Methods: An online survey was conducted with individuals who have had a diagnosis of cancer (n=1,517) to better understand their healthcare experiences as well as the impact their cancer diagnosis had on their quality of life. Measures included agreement scale questions assessing patient information needs surrounding treatment decision making. Open-ended questions where respondents were prompted to provide a written response allowed researchers to further assess patients’ understanding of palliative and hospice care. Responses to agreement-scale questions were evaluated using descriptive statistics. Openended question responses were analyzed using Dedoose qualitative data analysis software. Results: Among patients with a diagnosis of cancer, there were a broad range of patient misperceptions regarding palliative care, hospice care, and how they are used in cancer care. The majority of respondents (81%) stated that their HCP played a role when deciding on their treatment plan. Despite this, only 46% were confident they knew about the treatment’s impact on their daily life, 56% were confident they knew about the potential side effects of treatment, and 57% felt they had all of the information they needed. Themes identified through qualitative analysis include: patient conflation of palliative and hospice care, belief that palliative and hospice care are only relevant to end-of-life decision-making, and uncertainty about whether quality of life can actually be improved. Conclusions: Institutions and HCPs are recommended to integrate palliative care into cancer care. However, as this research shows, oncology patients are often misinformed about the benefits of palliative care. This follows a parallel concern of patients making treatment decisions without optimal information. A potential factor behind this unmet need may be lack of effective communication between patient and HCP. Palliative care may be mentioned by the HCP, but not discussed with enough empathy or depth, leading to patient misunderstanding and lack of inclusion in treatment plans.


2016 ◽  
Vol 22 (2) ◽  
pp. 114-120 ◽  
Author(s):  
Jennifer L. Ashley ◽  
Tracy K. Fasolino

Hospice and palliative care aim to improve the quality of life for patients and families impacted by chronic, serious, and life-threatening illnesses. Patients and families benefit from earlier integration of palliative care and seamless transitions to hospice care. Nurses are an integral part of the care team, and their understanding of these services is critical. However, many nurses do not receive formal education in hospice and palliative care. This leads to lack of skills that nurses need to provide and discuss hospice and palliative care across care settings. Nurses in an acute care setting of a large health system were invited to participate in a survey, Attitudes Towards Care at the End-of-Life. The results of this survey revealed that nurses believe that patients and families need to be communicated with honestly regarding their disease, but nurses lack the knowledge of how to facilitate these discussions. Another key finding is that nurses feel less confident with non-pharmacologic interventions to relieve patients’ suffering. Education is urgently needed in these areas.


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