Case Studies In Palliative And End Of Life Care PdfBy Ormazd T. In and pdf 22.04.2021 at 19:39 9 min read
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This resource has not been updated since July It may not reflect current policy but still provides valuable practice guidance.
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People living with dementia deserve to experience the benefits of receiving palliative care and end-of-life services and supports, yet they often do not receive this care compared to those with other terminal diseases. People living with dementia in rural areas often face additional challenges to accessing such care.
The purpose of this scoping review was to systematically review and synthesize the literature on palliative and end-of-life care for people with dementia living in rural areas, and to identify and describe key findings and gaps in the literature. A collaborative research team approach was used in an iterative process across all stages of this review. Systematic, comprehensive searches were conducted across ten databases and eight targeted websites for relevant peer-reviewed, original research and other less formal literature, published in English, which yielded a total of results.
After duplicate removal, screening, and review, 24 items were included for synthesis. All items were described and illustrated by frequency distribution, findings were grouped thematically, and five key themes emerged, including: 1 Knowledge about dementia, 2 Availability, accessibility, and utilization of palliative and end-of-life care services and supports, 3 Decision-making about care, the value of a person-centered approach and collaborative support, 4 Perspectives on artificial nutrition, hydration, and comfort care, and 5 Quality of life and death.
The main gap identified was literature pertaining to rural populations, especially from locations other than the United States. The influence of rurality on relevant findings was mixed across rural-urban comparison studies, as was the effect of sex and gender across the literature.
Several areas were highlighted including the importance of increasing knowledge about dementia, having early conversations about advanced care and treatment options, providing a person-centered approach, and the potential for using technology to address rural access issues.
These findings can be used to inform future research and policy and the development of services, supports, and strategies for rural people living with dementia.
Further research is recommended. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Data Availability: All relevant data are within the manuscript and its Supporting Information files. Competing interests: The authors have declared that no competing interests exist.
Dementia is caused by a group of diseases that are typically progressive in nature, affect cognitive abilities such as memory and decision-making and behaviors, and affect the ability to perform activities of daily life [ 1 ].
Globally, it is estimated that over 50 million people are currently living with dementia [ 2 ]. This number is projected to increase by approximately 10 million each year, reaching million by the year [ 2 ]. As a chronic, terminal disease, experiences, abilities, and needs vary across the different disease stages [ 2 ]. The World Health Organization describes palliative and end-of-life care as essential in advanced, late- or end-stage dementia [ 1 ].
Although there are several terms related to care provided during the end of life for example hospice care, end-of-life care, and palliative care , these terms are at times used collectively to represent care that is intended to better the quality of life and death for people dealing with a terminal illness [ 3 ]. While palliative care and end-of-life care share common goals, most often palliative care can, and should, begin much earlier in the continuum of care than the end of life stage.
In fact, advance planning for both palliative and end-of-life care can begin soon after diagnosis [ 4 ]. For the purposes of this review, the terms palliative care and end-of-life care are used the way they were referred to in the literature cited. The Worldwide Hospice Palliative Care Alliance and the World Health Organization recognize that the benefits of palliative care extend to individuals living with chronic and life-limiting, terminal conditions [ 5 ].
However, there are many barriers to accessing palliative care for people with dementia such as misconceptions that dementia is not terminal, insufficient policy and resources, a lack of health professionals with training in palliative care and dementia, a deficit in advance directives regarding end-of-life care, and cultural and social beliefs related to death and dying [ 5 — 7 ].
It has been recognized that the palliative care needs of people with dementia are likely underestimated, under-assessed, and under-treated, on a global level [ 6 ]. In addition, people living in rural or remote areas more often consist of older populations [ 8 ] and experience additional unique barriers to accessing care and services [ 9 ] compared to their urban counterparts [ 8 , 9 ]. The purpose of this review was to scope the literature pertaining to palliative and end-of-life care for people with dementia and their families who live in rural areas.
Specifically, to comprehensively review and summarize the evidence regarding palliative and end-of-life care for people with dementia living in rural areas, identify key findings and gaps in the literature, and make recommendations for future research.
The protocol used to conduct this scoping review was based on the methodological framework of Arksey and O'Malley [ 10 ], built on by Levac et al [ 11 ], and later revised and updated by the Joanna Briggs Institute [ 12 , 13 ].
The protocol was developed a priori and was not registered. The five-step framework [ 10 ] included the following: i identifying the research questions, ii identifying the relevant studies, iii study selection, iv data charting, and v collating, summarizing, and reporting the results. A collaborative research team approach was used in the iterative process of developing the research questions, search strategies, and data extraction form.
The following research questions were explored: What were the main themes identified across the literature pertaining to dementia-related palliative and end of life care?
Were there gaps in knowledge identified in the literature? In literature that reported on both rural and urban populations, were there any differences in findings between rural and urban? Were there any differences in findings based on individual characteristics such as sex and gender or study characteristics such as the country in which the literature originated? A broad search strategy was designed with the guidance of a university health sciences librarian.
Search strategies were customized to each specific database and are included in S2 Appendix. Final searches were completed on November 13, , and restricted to English language only. The reference lists of studies selected for inclusion were hand-searched as a supplemental approach to identify any additional relevant studies.
In addition, grey literature and organization sites were searched. Grey search strategies are itemized and described in S3 Appendix. After deduplication, remaining items were screened for inclusion. Inclusion and exclusion criteria are itemized in Table 1. Forms were created and piloted in DistillerSR to screen the peer-reviewed literature across two levels. The grey literature underwent an initial screen for relevance by the first author and all remaining records were screened in-depth by the first author and one coauthor.
All types of original research methodologies and designs were eligible for inclusion. Inclusion criteria required the literature was relevant to the research questions regarding palliative or end-of-life care for rural people with dementia and their families see Table 1. Unresolved screening conflicts were resolved by the second author.
The reference lists of peer-reviewed studies ultimately selected for inclusion were hand-searched and three additional studies were identified for inclusion. Additional information included whether the study was rural or rural-urban and the definition of rural used when provided.
Peer-reviewed literature were collated by study methodology, publication year, and country and grey literature was collated by document type, publication year, and country. Thematic analysis of the main findings of the included literature was conducted.
An inductive approach to thematic analysis was used to search for repeated patterns of meaning within the main findings of the charted data. The main findings were read and re-read thoroughly and analytically using a semantic approach to identify common, re-occurring explicit words or surface meanings in the data.
Annotation and color highlighting were used to code the data as themes emerged and ultimately, data were named and grouped according to similarities or patterns. Overall, the literature included for synthesis used similar definitions or conceptualizations of the terms palliative care and end-of-life care as those presented earlier in this review.
Analysis of the main findings identified five key overarching themes related to: 1 dementia knowledge, 2 services and supports, 3 decision-making, a person-centered approach and collaborative care, 4 artificial nutrition, hydration, and comfort care, and 5 quality of life and death.
Themes are described in detail below and each of the five themes were mapped to the literature in Table 4. Quantitative study designs included three retrospective cohort [ 16 , 20 , 21 ], two retrospective cross-sectional [ 17 , 22 ], one retrospective longitudinal and cross-sectional [ 19 ], and one randomized control trial [ 18 ]. Five peer-reviewed studies were qualitative [ 23 — 27 ] published from to , four of which focused solely on rural populations [ 23 — 26 ].
Qualitative study designs employed the following methods: focus groups [ 23 , 26 , 27 ], in-person interviews [ 24 ], and a biographical narrative [ 25 ]. One was conducted in each of Australia [ 25 ], Canada [ 24 ], and Sweden [ 17 ]. Overall, studies involved more female participants than males [ 16 , 18 — 23 , 25 — 27 ]. One study had more males than females [ 24 ] and in one study participant sex or gender was not reported [ 17 ].
Five of these had a focus on rural populations [ 29 , 30 , 33 , 34 , 36 ], three on rural-urban [ 28 , 31 , 32 ], and one [ 35 ] that was unspecified. One abstract [ 30 ] was from Scotland which had a rural focus. The media release [ 38 ] was from Australia dated March 14, and the personal reflection [ 39 ] was from the United States no date.
Both of these involved a rural-urban focus. Sex and gender was not addressed in the grey literature; however, almost all of the peer-reviewed studies reported on the sex of participants and none reported on gender. Overall, there were greater numbers of female participants in all but one study [ 24 ], and in one study sex was not reported [ 17 ]. Sex differences in outcomes were identified in four studies [ 18 — 20 , 22 ].
Specifically, hospice recipients with dementia were generally female [ 20 ], as were hospice decedents with advanced dementia [ 19 ]. Among nursing home residents, being male was significantly associated with feeding tube use [ 22 ] with females over three times more likely to receive comfort care versus feeding tubes [ 18 ].
The following themes emerged: 1 Knowledge about dementia, 2 Availability, accessibility, and utilization of palliative and end-of-life care services and supports, 3 Decision-making about care, the value of a person-centered approach and collaborative support, 4 Perspectives on artificial nutrition, hydration, and comfort care, and 5 Quality of life and death.
Each of the peer-reviewed studies and grey literature are mapped to themes Table 4 and their frequency of occurrence by theme is illustrated graphically Fig 3. Six peer-reviewed studies reported on knowledge about dementia which varied among people in general living in the community, people with dementia and their families, and health care and service providers [ 17 , 18 , 23 — 26 ].
Three of these studies explored knowledge about life-prolonging care [ 18 , 23 , 26 ]. A Swedish study that examined dementia care and service systems in nine municipalities reported on the educational level of professional care providers such as physicians, specialists, nurses, occupational therapists, physiotherapists, and social workers [ 17 ].
Professional care providers with specialized knowledge about dementia were reportedly rare, and those with such knowledge were typically employed in residential homes [ 17 ]. Home healthcare nurses reported feelings of helplessness in their [lack of] knowledge about how to help people with dementia [ 23 ].
Healthcare providers acknowledged the importance of informing patients and family caregivers about end-of-life care to facilitate discussion about their expectations and discuss available treatment and support options [ 24 ]. Professional care providers stated that although caregivers were often grateful for having these discussions, many avoided them and instead accessed information through avenues such as community organizations, family members involved in health care, support groups, and the internet [ 24 ].
In a case study of one rural couple living with dementia, information was provided by a multidisciplinary community dementia care service through regular discussion with a case manager to identify and address their changing needs over the course of one year prior to the death of the spouse with dementia [ 25 ]. Among older rural adults, goals of care life prolonging, limited, or comfort care in advanced dementia were associated with levels of health literacy, where those with the highest health literacy levels were more likely 12x to choose comfort care compared to those with the lowest health literacy levels [ 18 ].
Eight grey sources included information about dementia knowledge [ 30 — 34 , 36 , 38 , 39 ]. Five of these were conference abstracts that presented technology-assisted remote delivery of information and education, that could be optimally used in rural or remote settings [ 30 , 32 — 34 , 36 ]. These focused on providing information and education to health care providers in primary care [ 34 ] and long-term care settings [ 30 — 33 ], and to patients and families in hospital settings [ 36 ].
Positive effects of learning among health care providers included improvements in skills [ 30 , 33 , 34 ], perceptions of team-based care [ 30 — 33 ], attitudes [ 33 ], perceptions of self-efficacy and confidence [ 33 , 34 ], feeling more valued in their role [ 30 ], and improvements in knowledge related to geriatrics and palliative care [ 33 , 34 ], including their ability to share this knowledge with other providers [ 34 ].
Rural care home staff and residents acknowledged that the ability to access dementia-related specialist expertise remotely allowed for faster assessment and treatment management [ 30 ]. Various technology-assisted methods were discussed as a means to effectively address dementia knowledge and information needs in rural and remote areas [ 30 — 32 ] and enhance the ability of healthcare providers to provide better care [ 32 ].
Among health care providers who received remote education, more than half reported this modality was as effective as in-person training [ 33 ]. The importance of increasing knowledge and education about dementia care for aged care providers and family members was also highlighted in a media release and personal reflection written by a daughter caregiver, respectively [ 38 , 39 ].
Three of these studies were focused on hospice care [ 16 , 19 , 20 ]. Across rural and urban participants, availability and utilization of care services were lower for palliative care compared to screening, diagnostics, and treatment [ 17 ]. Although palliative care was largely available and well-utilized in most of the municipalities under study within the home, in nursing homes, residential homes, and institutional care, dementia-specific care was less available [ 17 ].
Where dementia-specific care units were available, they were used by most study participants [ 17 ].
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Anyone can learn for free on OpenLearn, but signing-up will give you access to your personal learning profile and record of achievements that you earn while you study. Start this free course now. Just create an account and sign in. Enrol and complete the course for a free statement of participation or digital badge if available. Andrew was a 23 year-old car mechanic who had been suffering from indigestion for some months before the GP referred him to a hospital consultant, who after a series of tests diagnosed cancer of the colon, with liver secondaries. Because the treatment which Andrew had agreed to involved a long recovery, he decided to move back home with his parents for a while so that he would have someone to look after him and help him to recover from the planned surgery.
Community pharmacists encounter patients at all stages in their life; however, patients who require palliative care require dedicated time and special consideration. The World Health Organization WHO defines palliative care as an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness. This is achieved through the prevention and relief of suffering by means of early identification and impeccable assessment, and treatment of pain and other problems . Palliative care is often considered to be only for patients with cancer, but it also incl udes patients with conditions such as organ failure e. The same can be said when considering symptoms see Table .
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The following case vignette provides key concepts that could be considered when developing a plan of care for a patient who may require a controlled substance to manage their health concerns. As with any clinical situation, there are many patient variables that must be considered, including comorbid conditions, social determinants of health and their personal choices. Danny is reviewing the patient history outside the house or in the car before visiting the patient. Joshi Kamakani is a 70 year old retired engineer that the Palliative Care home care team and I have been looking after at home for the last two months. Joshi was diagnosed with inoperable prostate cancer three years ago and has been treated with ablative hormone therapy.
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Explore the latest in end-of-life care, including hospice and palliative care, estimating prognosis, palliative sedation, and more. This randomized effectiveness trial evaluates whether a nurse navigator—led advance care planning pathway combined with primary care professional—facing electronic health record interface facilitates use of advance care planning for vulnerable older adults. This randomized clinical trial assesses the effect of integrated palliative and oncology care on patient-reported and end-of-life outcomes in patients with acute myeloid leukemia. This study from the Netherlands looks at the association between having multiple geriatric syndromes and requesting euthanasia or physician-assisted suicide. In this narrative medicine essay, a critical care and palliative care physician draws a valuable lesson about the limits and beauty of last-ditch interventions after failing to save a fledgling hummingbird chick in its nest. This cohort study describes the ventilatory support provided within 30 days of death in older adults with chronic obstructive pulmonary disease, congestive heart failure, cancer, or dementia.
Aneesa Malik Sunday, June 2, Patients that are in the fifth life stage end-of-life often present with multiple problems, which makes them challenging cases. Often, these patients are very vulnerable, and this is sometimes overlooked.
Case Studies in Palliative and End-of-Life Care uses a case-based approach to provide students and practitioners with an important learning tool to improve.
About two years ago patient noted a silvery patch on his tongue but did not immediately seek medical attention. He continued to smoke and use chewing tobacco. The malignancy progressed rapidly despite treatment and resulted in extensive tissue necrosis resulting in the following distressing symptoms:. Halbert did quite well on this regimen for several weeks, but as the disease progressed, his pain worsened secondary to extensive local tissue necrosis culminating in admission to the hospital for symptom control. Upon admission, numerous interventions were attempted in an effort to assuage Mr. At this point, a family meeting was held to elicit goals of care and it determined the following:. He was clearly suffering greatly and this caused severe distress to his dear wife and loving children who could not bear to see him suffer in this manner.
The World Health Organization defines palliative care as a holistic, multidisciplinary team-based approach for patients and their families . There are several diagnoses that lead to palliative care, with the primary being terminal cancer. Over 20 million people are estimated to require palliative care at the end of their life every year. Cross culturally, we see ebbs and flows of successful palliative care as well as global organizations, such as WHO, that are establishing policies to ensure care. Different ethics are to be considered when integrated palliative care across the globe, but one similarity that is universally established is the wish and desire to end life comfortably. He lived with his partner and two children that primarily made the decisions regarding Mr. This family strongly believed in Confucianism bioethics that influenced care plan in Singapore.
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