“I needed someone to hold my hand”: Experiences and Unmet Palliative Care Needs at Home from the Perspective of People with Dementia and Caregivers (GP741)

2020 ◽  
Vol 60 (1) ◽  
pp. 269-270
Author(s):  
Krista Harrison ◽  
Sarah Garrett ◽  
Alissa Bernstein ◽  
Georges Naasan ◽  
Christine Ritchie
Keyword(s):  
Palliative Care ◽  
Care Needs ◽  
People With Dementia ◽  
Palliative Care Needs ◽  
At Home

scholarly journals There's no Place like Home: Oklahoman's Preferences for Site of Death

2008 ◽  
Vol 1 ◽  
pp. PCRT.S1058 ◽  
Author(s):  
Marianne Matzo ◽  
Kamal Hijjazi
Keyword(s):  
Palliative Care ◽  
Terminal Illness ◽  
Income Level ◽  
Stated Preferences ◽  
Care Needs ◽  
Attitudes And Behaviors ◽  
Dying At Home ◽  
Palliative Care Needs ◽  
Insight Into ◽  
At Home

Objective This study sought to document Oklahomans knowledge, attitudes, and behaviors regarding palliative care; this paper focuses on subjects stated preferences for where they would choose to die. Design Quantitative study used a random state-wide telephone sample of Oklahoma residents. Subjects Data from 804 residents in the State of Oklahoma between November and December (2005). Results An overwhelming majority of the respondents (80%) reported preference to die at home in the event that they suffer a terminal illness. The proportion of respondents under the age of 65 who preferred to die at home (80.9%) was slightly higher than those aged 65 and over (74.8%). Also, while 81.4% of the female respondents reported preference for dying at home, 75.8% of the male respondents shared such preference (P < 0.05). More married respondents (82.7%) than non-married respondents (74.7%) reported preference for dying at home (P < 0.01). A significant association (P < 0.05) between income level and preference for dying at home was noted. While 84.3% of those with income level at $21,000 or more reported reference for dying at home, 76.4% of those with income below $21,000 reported the same preference. Conclusions This paper offers insight into factors that influence Oklahoman's stated preferences for site of death that can assist the statewide agenda in the planning and provision of palliative care. This information can be adapted in other states or countries to determine palliative care needs.

scholarly journals Needs of patient with advanced stages of cancer in a Thai community

2018 ◽  
Vol 32 (5) ◽  
pp. 342-351
Author(s):  
Panita Krongyuth ◽  
Pimpan Silpasuwan ◽  
Chukiat Viwatwongkasem ◽  
Cathy Campbell
Keyword(s):  
Palliative Care ◽  
Content Analysis ◽  
Pain Management ◽  
Care Providers ◽  
Care Needs ◽  
Open Communication ◽  
Content Type ◽  
Advanced Stages ◽  
Palliative Care Needs ◽  
At Home

Purpose The purpose of this paper is to explore the needs of people with cancer in advanced stages and to analyze factors that influence them. Design/methodology/approach A concurrent mixed-method design was used. Descriptive design was conducted in Ubon Ratchathani Province, Thailand. Data were collected from a convenience sample of patients with advanced cancer of any tissue or organ. Questionnaires were completed by 110 patients aged 60 years and above (response rate 110/130=84.6 percent). In-depth interviews were conducted with a total of eight patients. Content analysis of semi-structured interviews of a sub-sample was subsequently performed to better understand the real needs of patients with advanced stages of cancer at home setting. Findings The majority (77.5 percent) reported a preference to spend their final days at home. The four most common palliative care needs were more information about disease and medical treatment (98.2 percent), more treatment for pain (97.3 percent), health education for family caregivers (95.5 percent) and health volunteers visit at home (95.5 percent). Content analysis of the qualitative data suggested that patient needs health care providers to deliver open communication, pain management and provide psychosocial supports. Originality/value The result showed that patients-related variables are associated with the palliative care needs in patients with advanced stages of cancer. Communication skills and pain management are the key components to support the need for palliative care at home and to benefit the quality of life in terminally ill patients.

Identifying palliative care needs in people with dementia

2017 ◽  
Vol 11 (4) ◽  
pp. 328-333 ◽  
Author(s):  
Mari Lloyd-Williams ◽  
Caroline Mogan ◽  
Karen Harrison Dening
Keyword(s):  
Palliative Care ◽  
Care Needs ◽  
People With Dementia ◽  
Palliative Care Needs

scholarly journals Identification of palliative care needs among people with dementia and its association with acute hospital care and community service use at the end-of-life: A retrospective cohort study using linked primary, community and secondary care data

2021 ◽  
pp. 026921632110198
Author(s):  
Javiera Leniz ◽  
Irene J Higginson ◽  
Deokhee Yi ◽  
Zia Ul-Haq ◽  
Amanda Lucas ◽  
...  
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Cohort Study ◽  
Retrospective Cohort Study ◽  
Retrospective Cohort ◽  
Hospital Admissions ◽  
Care Practice ◽  
Care Needs ◽  
People With Dementia ◽  
Palliative Care Needs

Background: Hospital admissions among people dying with dementia are common. It is not known whether identification of palliative care needs could help prevent unnecessary admissions. Aim: To examine the proportion of people with dementia identified as having palliative care needs in their last year of life, and the association between identification of needs and primary, community and hospital services in the last 90 days. Design: Retrospective cohort study using Discover, an administrative and clinical dataset from 365 primary care practices in London with deterministic individual-level data linkage to community and hospital records. Setting/participants: People diagnosed with dementia and registered with a general practitioner in North West London (UK) who died between 2016 and 2019. The primary outcome was multiple non-elective hospital admissions in the last 90 days of life. Secondary outcomes included contacts with primary and community care providers. We examined the association between identification of palliative care needs with outcomes. Results: Among 5804 decedents with dementia, 1953 (33.6%) were identified as having palliative care needs, including 1141 (19.7%) identified before the last 90 days of life. Identification of palliative care needs before the last 90 days was associated with a lower risk of multiple hospital admissions (Relative Risk 0.70, 95% CI 0.58–0.85) and more contacts with the primary care practice, community nurses and palliative care teams in the last 90 days. Conclusions: Further investigation of the mechanisms underlying the association between identification of palliative care needs and reduced hospital admissions could help reduce reliance on acute care for this population.

scholarly journals Development of an Early Warning System to Prevent Crises in the Palliative Home Care Setting of Patients and Their Informal Caregivers: Protocol for a Mixed Method Study

10.2196/13933 ◽  
2019 ◽  
Vol 8 (11) ◽  
pp. e13933 ◽  
Author(s):  
André Fringer ◽  
Eleonore Arrer ◽  
Edith Maier ◽  
Wilfried Schnepp ◽  
Tom Ulmer
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
Early Warning ◽  
Early Warning System ◽  
Care Setting ◽  
Symptom Burden ◽  
Warning System ◽  
Care Needs ◽  
Palliative Care Needs ◽  
At Home

Background Most people wish to die at home, but most people in Switzerland die in hospitals or nursing homes. Family caregivers often offer support so patients with palliative care needs can stay at home for as long as possible. However, crises and unplanned hospital admissions often occur in this setting because of family caregiver strain and symptom severity in patients. The so-called smart devices such as wearables or smartphones offer the opportunity to continuously monitor certain parameters and recording symptom deteriorations. By providing professionals with this information in a timely manner, crises in the home could be avoided. Objective The aim of this interdisciplinary study is to explore the symptom burden of people with palliative care needs who are cared for at home and to understand the development of crises in the home care setting. On the basis of the findings from this study, we will develop an early warning system to stabilize the home care situation and to prevent critical events from happening, thereby reducing avoidable hospitalizations. Methods A mixed method study is being conducted consisting of 4 main consecutive phases: (1) developing the monitoring system; (2) pretesting the system and adapting it to user needs; (3) conducting the study in the palliative home care setting with approximately 40 patients; and (4) distinguishing symptom patterns from the collected data specific to crisis emergence, followed by the development of an early warning system to prevent such crises. In study phase 3, each patient will receive an upper arm sensor and a symptom diary to assess symptom burden related to patients and family caregivers. A within-case analysis will be conducted for each patient’s situation followed by a cross-case comparison to identify certain symptom patterns that may predict symptom deterioration (study phase 4). Results The collaboration with the local mobile palliative care team for participant recruitment and data collection has been established. Recruitment is forthcoming. Conclusions We expect the findings of this study to provide holistic insight into symptom burden and the well-being of patients with palliative care needs and of their family caregivers. This information will be used to develop an early warning system to avoid the occurrence of potential crises, thereby improving palliative care provision at home. International Registered Report Identifier (IRRID)  PRR1-10.2196/13933

An Admiral Nursing and hospice partnership in end-of-life care: Innovative practice

Dementia ◽  
2018 ◽  
Vol 19 (7) ◽  
pp. 2484-2493
Author(s):  
Karen Harrison Dening ◽  
Jaqueline Crowther ◽  
Sadaf Adnan
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Stage ◽  
Life Care ◽  
Care Providers ◽  
Care Needs ◽  
People With Dementia ◽  
Health And Social Care ◽  
Palliative Care Needs

Addressing palliative care needs of people with dementia appropriately, identifying the end-of-life stage, meeting the needs of family carers as well as supporting the preferences and wishes of the person with the diagnosis can all present challenges to generalist health and social care providers. In partnership with Dementia UK and Kirkwood Hospice in West Yorkshire embarked upon a two-year pilot to introduce the first end-of-life care Admiral Nurse to their Specialist Community Palliative Care Team to identify and support people with dementia who required palliative and end-of-life care. This paper describes and discusses this innovative partnership and outcomes from year one evaluation and sets out future plans.

Circumstances of hospital admissions in palliative care: A cross-sectional survey of patients admitted to hospital with palliative care needs

2018 ◽  
Vol 32 (5) ◽  
pp. 1030-1036 ◽  
Author(s):  
Jackie Robinson ◽  
Merryn Gott ◽  
Rosemary Frey ◽  
Christine Ingleton
Keyword(s):  
Palliative Care ◽  
Hospital Admissions ◽  
Community Services ◽  
Ageing Population ◽  
Care Needs ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Care At Home ◽  
Palliative Care Needs ◽  
At Home

Background: On average, people will experience 2.28 hospital admissions in the last year of life with the likelihood of a hospital admission increasing in the last 2 weeks of life. Reducing hospital admissions has become a focus for high-income countries as they work to manage the financial implications of an ageing population. However, the circumstances by which patients with palliative care needs are admitted to hospital remain poorly understood. Aim: To explore the circumstances of hospital admissions for patients with palliative care needs. Design: Cross-sectional survey design using face-to-face questionnaires. Setting/participants: In total, 116 patients aged >18 years admitted to a tertiary hospital with palliative care needs. Results: Those with a non-cancer diagnosis and those aged over 75 years were less likely to have hospice involved prior to the admission ( x2 (1, n = 116) = 10.19, p = 0.00). Few patients recognised community services as having a role in enabling them to remain at home. Those with cancer placed a significantly higher priority on receiving information about their illness ( t(114) = 2.03, p = 0.04) and receiving tests and investigations ( t(114) = 2.37, p = 0.02) in hospital. Conclusion: This study has demonstrated the complexity of hospital admissions in palliative care. Further research is needed to explore patient perceptions of care at home and the role of community services to enable them to remain at home. Understanding the motivation to come to hospital in the context of an incurable illness and limited treatment options may help to inform the development of services that can enable better care at home.

Comparing the Palliative Care Needs of Patients Seen by Specialty Palliative Care Teams at Home Versus in Clinic

2020 ◽  
Author(s):  
Grant M. Smith ◽  
Brook A. Calton ◽  
Michael W. Rabow ◽  
Angela K. Marks ◽  
Kara E. Bischoff ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Needs ◽  
Palliative Care Teams ◽  
Palliative Care Needs ◽  
At Home

Accuracy of the Distress Thermometer for home care patients with palliative care needs in Germany

2016 ◽  
Vol 15 (3) ◽  
pp. 288-294 ◽  
Author(s):  
Johannes Wüller ◽  
Stefanie Küttner ◽  
Ann Christina Foldenauer ◽  
Roman Rolke ◽  
Tania Pastrana
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
Depression Scale ◽  
Distress Thermometer ◽  
Karnofsky Performance Scale ◽  
Cutoff Score ◽  
Care Needs ◽  
The Mean ◽  
Palliative Care Needs ◽  
At Home

ABSTRACTObjective:Our aim was to examine the accuracy of the German version of the Distress Thermometer (DT) compared with the Hospital Anxiety and Depression Scale (HADS) in patients with palliative care needs living at home.Method:Ours was a 15-month cross-sectional study beginning in September of 2013 in Germany with consecutive patients cared for by a palliative home care service. The survey was implemented during the initial visit by a home care team. Patients were excluded if they were under 18 years of age, mentally or physically unable to complete the assessment questionnaires as judged by their healthcare worker, or unable to understand the German language. During the first encounter, the DT and HADS were applied, and sociodemographic and medical data were collected.Results:A total of 89 persons completed both the HADS and DT questionnaires (response rate = 59.7%; mean age = 67 years; female = 55.1%; married = 65.2%; living home with relatives = 73.0%; oncological condition = 92.1%; Karnofsky Performance Scale [KPS] score: 0–40 = 30.3%, 50–70 = 57.3%, >80 = 6.7%). The mean DT score was 6.3 (±2.3), with 84.3% of participants scoring above the DT cutoff (≥4). The mean HADStotal score was 17.9 (±7.8), where 64% of participants had a total HADS score (HADStotal) ≥15, 51.7% reported anxiety (HADSanxiety ≥ 8), and 73% reported depression (HADSdepression ≥ 8). Using the HADS as a gold standard, a DT cutoff score ≥5 was optimal for identifying severe distress in patients with palliative care needs, with a sensitivity of 93.0%, a specificity of 34.4%, a positive predictive value (PPV) of 73.3%, and likelihood ratios LR+ = 1.42 (<3) and –LR = 0.203 (<0.3).Significance of results:The DT performed satisfactorily compared to the HADS in screening for distress in our study and can be employed as an instrument for identification of patients with distress. Consequent to the high prevalence of distress, we recommend its routine use for screening distressed persons at home with palliative care needs in order to offer adequate support.

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