A new measure of home care patients' dignity at the end of life: The Palliative Patients' Dignity Scale (PPDS)

2015 ◽  
Vol 14 (2) ◽  
pp. 99-108 ◽  
Author(s):  
David Rudilla ◽  
Amparo Oliver ◽  
Laura Galiana ◽  
Pilar Barreto
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Survey Design ◽  
Second Step ◽  
Care Family ◽  
Anxiety Depression ◽  
Palliative Patients

ABSTRACTObjective:This study aimed to develop a new and brief instrument to be employed in dignity measurement, one based on the perceptions of patients, relatives, and professionals about dignity.Method:Surveys of patients receiving palliative care, family caregivers, and palliative care professionals were first carried out (sample 1). In the second step, palliative care patients were surveyed with a pilot questionnaire (sample 2). Finally, a survey design was used to assess patients admitted into a home care unit (sample 3). Sample 1 included 78 subjects, including patients, family caregivers, and professionals. Some 20 additional palliative patients participated in sample 2. Finally, 70 more patients admitted to a home care unit participated were surveyed (sample 3). Together with the Palliative Patients' Dignity Scale (PPDS), our survey included other measures of dignity, anxiety, depression, resilient coping, quality of life, spirituality, and social support.Results:After analyzing data from steps 1 and 2, an eight-item questionnaire was presented for validation. The new scale showed appropriate factorial validity (χ2(19) = 21.43, p = 0.31, CFI = 0.99, GFI = 0.92, SRMR = 0.07, and RMSEA = 0.04), reliability (internal consistency estimations of 0.75 and higher), criterial validity (significant correlations with the hypothesized related variables), and a cutoff criteria of 50 on the overall scale.Significance of Results:The new PPDS has appropriate psychometric properties that, together with its briefness, encourages its applicability for dignity assessment at the end of life.

Retrospective review of end-of-life care in the last month of life in older patients with multiple myeloma: what collaboration between haematologists and palliative care teams?

2020 ◽  
pp. bmjspcare-2020-002293
Author(s):  
Thomas Chalopin ◽  
Nicolas Vallet ◽  
Lotfi Benboubker ◽  
Marlène Ochmann ◽  
Emmanuel Gyan ◽  
...  
Keyword(s):  
Multiple Myeloma ◽  
Palliative Care ◽  
End Of Life ◽  
Older Patients ◽  
High Rate ◽  
Palliative Care Teams ◽  
Care Family ◽  
Eol Care

ObjectivesPatients with haematological malignancies (HM) receive more aggressive treatments near the end-of-life (EOL) than patients with solid tumours. Palliative care (PC) needs are less widely acknowledged in patients with multiple myeloma (MM) than in other HM. The main objective of our study was to describe EOL care and PC referral in a population of older patients with MM.MethodsWe retrospectively included deceased inpatients and outpatients with an MM previously diagnosed at the age of 70 and over in two tertiary centres in France. We reported EOL characteristics regarding treatments considered to be aggressive—antimyeloma therapies, hospitalisations, blood product transfusions, intensive care units (ICUs) or emergency admissions—and PC referral.ResultsWe included 119 patients. In their last month of life, 75 (63%) were hospitalised for fever, pain, asthenia, anaemia or bleeding, 49 (41%) were admitted in the emergency department and 12 (10%) in ICU, 76 (64%) still received antimyeloma therapy and 45 (38%) had at least two transfusions. Only 24 (20%) received PC intervention for pain, global care, family support, anxiety, social care or confusion. Median follow-up until death was 20 days.ConclusionsOur study found a high rate of hospitalisations and antimyeloma therapies in the last month of life. The PC referral rate was low, often once specific treatments were stopped. Our results suggest the need for more effective collaboration between PC teams and haematologists in order to respond to the specific needs of these patients and to improve their quality of care at EOL.

scholarly journals Study protocol of coaching end-of-life palliative care for advanced heart failure patients and their family caregivers in rural appalachia: a randomized controlled trial

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Ubolrat Piamjariyakul ◽  
Trisha Petitte ◽  
Angel Smothers ◽  
Sijin Wen ◽  
Elizabeth Morrissey ◽  
...  
Keyword(s):  
Heart Failure ◽  
Clinical Trial ◽  
Palliative Care ◽  
Randomized Controlled Trial ◽  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Standard Care ◽  
Controlled Trial ◽  
Randomized Controlled

Abstract Background Heart failure (HF) afflicts 6.5 million Americans with devastating consequences to patients and their family caregivers. Families are rarely prepared for worsening HF and are not informed about end-of-life and palliative care (EOLPC) conservative comfort options especially during the end stage. West Virginia (WV) has the highest rate of HF deaths in the U.S. where 14% of the population over 65 years have HF. Thus, there is a need to investigate a new family EOLPC intervention (FamPALcare), where nurses coach family-managed advanced HF care at home. Methods This study uses a randomized controlled trial (RCT) design stratified by gender to determine any differences in the FamPALcare HF patients and their family caregiver outcomes versus standard care group outcomes (N = 72). Aim 1 is to test the FamPALcare nursing care intervention with patients and family members managing home supportive EOLPC for advanced HF. Aim 2 is to assess implementation of the FamPALcare intervention and research procedures for subsequent clinical trials. Intervention group will receive routine standard care, plus 5-weekly FamPALcare intervention delivered by community-based nurses. The intervention sessions involve coaching patients and family caregivers in advanced HF home care and supporting EOLPC discussions based on patients’ preferences. Data are collected at baseline, 3, and 6 months. Recruitment is from sites affiliated with a large regional hospital in WV and community centers across the state. Discussion The outcomes of this clinical trial will result in new knowledge on coaching techniques for EOLPC and approaches to palliative and end-of-life rural home care. The HF population in WV will benefit from a reduction in suffering from the most common advanced HF symptoms, selecting their preferred EOLPC care options, determining their advance directives, and increasing skills and resources for advanced HF home care. The study will provide a long-term collaboration with rural community leaders, and collection of data on the implementation and research procedures for a subsequent large multi-site clinical trial of the FamPALcare intervention. Multidisciplinary students have opportunity to engage in the research process. Trial registration ClinicalTrials.gov NCT04153890, Registered on 4 November 2019

The Physical Hospital Environment and Its Effects on Palliative Patients and Their Families: A Qualitative Meta-Synthesis

2021 ◽  
pp. 193758672110329
Author(s):  
Elizabeth M. Miller ◽  
Joanne E. Porter ◽  
Michael S. Barbagallo
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Hospital Environment ◽  
Room Size ◽  
Centered Care ◽  
Palliative Care Units ◽  
Qualitative Literature ◽  
Palliative Patients

Aim: To review the latest qualitative literature on how the physical hospital environment affects palliative patients and their families. Background: People with a life-limiting illness may receive palliative care to improve their quality of life in hospital and may have multiple admissions as their illness progresses. Yet, despite a preference for a death at home, more than half of the dying population will receive end-of-life care in hospital. The physical hospital environment consists of ambiance, aesthetics, and architectural factors, and it is well known that the hospital’s acute wards are not a homely environment. Demand is increasing for the physical environment to be improved to better meet the needs and demands of palliative and end-of-life patients and their families. Method: Combining thematic analysis and meta-ethnography methodologies, 12 international qualitative papers were analyzed and synthesized by the three authors. Results: Findings resulted in the development of the SSAFeR Place approach that incorporates the concepts that are important to palliative and end-of-life patients and their families by describing an environment within the acute or palliative care units that feels safe, is private, customizable, and accommodates family; is a space to share with others, is homelike in ambiance and aesthetics, and is conducive for reflection. The concepts of identity, belonging, and safety are connected to the notions of home. Conclusions: To provide person-centered care and to move the focus toward the palliative approach of comfort and quality of life, attention to room size, layout, aesthetics, and ambiance is needed.

The Life Experiences Among Primary Family Caregivers of Home-Based Palliative Care

2020 ◽  
Vol 37 (10) ◽  
pp. 816-822 ◽  
Author(s):  
Meng-Ping Wu ◽  
Sheng-Jean Huang ◽  
Lee-Ing Tsao
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Family Members ◽  
Assessment Tools ◽  
Theory Approach ◽  
Home Based ◽  
Number Of Patients ◽  
Primary Family

Background: An increasing number of patients with terminal illnesses prefer to die in their own homes due to aging, high medical payments, a limited number of hospitalization days, and the ability to receive care from family members. However, few studies have been conducted on the subjective perception and value of caregivers for home-based palliative care (HBPC). Objective: To identify common themes and topics of primary family caregivers’ lived experiences with HBPC when taking care of terminally ill family members. Methods: We conducted audio-recorded transcripts of one-on-one in-depth interviews of primary family caregivers of HBPC. Through a purposive sampling method, the participants were all interviewed; these interviews were transcribed verbatim and analyzed using a grounded theory approach. Results: A total of 22 primary family caregivers participated in the study. “Wholeheartedly accompanying one’s family to the end of life at home” was the core category. Six main themes describing caregivers’ experiences emerged from the interviews: (1) learning the basic skills of end-of-life home care, (2) arranging the sharing and rotation of care, (3) preparing for upcoming deaths and funerals, (4) negotiating the cultural and ethical issues of end-of-life home care, (5) ensuring a comfortable life with basic life support, and (6) maintaining care characterized by concern, perseverance, and patience. Conclusions: Primary family caregivers of HBPC need support and must learn home care skills by means of the holistic approach. It is crucial to establish assessment tools for caregivers’ preparedness for HBPC, including biopsychosocial and cultural considerations.

The psychosocial experiences of older palliative patients while participating in a Living with Hope Program

2016 ◽  
Vol 14 (6) ◽  
pp. 672-679 ◽  
Author(s):  
Wendy Duggleby ◽  
Dan Cooper ◽  
Cheryl Nekolaichuk ◽  
Laura Cottrell ◽  
Jenny Swindle ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Thematic Analysis ◽  
Psychosocial Interventions ◽  
Positive Outcomes ◽  
Psychosocial Experiences ◽  
Psychosocial Processes ◽  
Palliative Patients

AbstractObjective:Several studies have reported the effectiveness of a variety of psychosocial interventions in increasing levels of hope in palliative care patients. The experience of palliative patients while participating in these interventions is unknown. Understanding these experiences would provide a rich understanding of how the interventions work to foster hope. The purpose of the present study was to describe the psychosocial processes that participants with advanced cancer receiving palliative care experienced when taking part in a Living with Hope Program (LWHP).Method:In the context of a study evaluating the LWHP, data were collected from 13 dyads (persons with advanced cancer and their caregivers) at two timepoints (one week apart). A thematic qualitative analysis of 52 open-ended audiotaped interviews was conducted that focused on the psychosocial processes that occurred during the LWHP.Results:The average age of palliative participants was 67 (SD = 6.6) and of their family caregivers 61 years of age (SD = 13.9). A thematic analysis suggested that the participants experienced the following psychosocial processes while participating in the LWHP: (1) reminiscing, (2) leaving a legacy, (3) positive reappraisal, and (4) motivational processes. These processes are the mechanisms by which the LWHP fosters the positive outcomes of increasing hope and improving quality of life. As well, the finding of motivational processes suggested that the LWHP may also increase life satisfaction, which is an outcome of motivational processes.Significance of the results:The findings from our study underscore the importance of uncovering the psychosocial processes through which the LWHP works to foster hope. They will assist in making revisions to the intervention that will increase its effectiveness, as well as providing a better understanding of hope in persons with advanced cancer.

Anxiety, depression and quality of life in family caregivers of palliative cancer patients during home care and after the patient's death

2016 ◽  
Vol 27 (2) ◽  
pp. e12606 ◽  
Author(s):  
H. Götze ◽  
E. Brähler ◽  
L. Gansera ◽  
A. Schnabel ◽  
A. Gottschalk-Fleischer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Home Care ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Anxiety Depression

scholarly journals How nurses support family caregivers in the complex context of end-of-life home care: a qualitative study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Yvonne N. Becqué ◽  
Judith A. C. Rietjens ◽  
Agnes van der Heide ◽  
Erica Witkamp
Keyword(s):  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Assessment Tools ◽  
Structured Interviews ◽  
Care Family ◽  
The Individual ◽  
Education Support ◽  
Support Family ◽  
At Home

Abstract Background Family caregivers are crucial in providing end-of-life care at home. Without their care, it would be difficult for many patients to die at home. In addition to providing care, family caregivers also need support for themselves. Nurses could play an important role in supporting family caregivers, but little is known about if and how they do so. The aim of this study is to explore how nurses currently approach and support family caregivers in end-of-life home care and which factors influence their support of family caregivers. Methods Data were collected using semi-structured interviews with 14 nurses from nine home care organisations in the Netherlands, in 2018. Interviews were audio-taped, transcribed verbatim and analysed using a thematic analysis approach. Results We identified two underlying nursing perspectives on supporting family caregivers: an instrumental perspective (seeing family caregivers mostly as collaborative partners in care) and a relational perspective (seeing family caregivers as both providing and needing support). All the interviewed nurses stated that they pay attention to family caregivers’ needs. The activities mentioned most often were: identification of support needs, practical education, support in decision-making about the patient’s treatment, emotional support, and organising respite care, such as night care, to relieve the family caregiver. The provision of support is usually based on intuition and experience, rather than on a systematic approach. Besides, nurses reported different factors at the individual, organisational and societal levels that influenced their support of family caregivers, such as their knowledge and experience, the way in which care is organised, and laws and regulations. Conclusions Nurses tend to address family caregivers’ needs, but such care was affected by various factors at different levels. There is a risk that nursing support does not meet family caregivers’ needs. A more reflective approach is needed and evidence-based needs assessment tools may help nurses to systematically assess family caregivers’ needs and to provide appropriate support.

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.

Setting and timing of end-of-life care in cancer patients.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e21502-e21502
Author(s):  
Elisa De Carlo ◽  
Lorenzo Gerratana ◽  
Marika Cinausero ◽  
Maria Grazia Vitale ◽  
Vanessa Buoro ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Of Care ◽  
Home Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Poor Quality ◽  
Hospital Death ◽  
Eol Care ◽  
The Impact

e21502 Background: Limited data are available on how the setting and timing of palliative care (PC) referral can affect end-of-life (EoL) care and survival in cancer patients (pts). The aim of our study was to evaluate the impact of PC referral (hospice and/or home-care services) versus family physician care (FP-C), in terms of both EoL quality of care and survival in cancer pts. Methods: The study included 337 cancer pts who died between January 2015 and February 2016. We retrieved data on type of EoL care and on poor quality of care indicators in the last 30 days of life. Palliative Care Survival (PCS) was defined as the interval between timing of PC referral and death. The survival after treatment (Treatment-Free Survival, TFS) was defined as the interval between the last administration of anticancer therapy and death. Results: FP-C court included 89 pts and PC services court 248 pts. The 248 PC pts were divided in three groups: 99 assisted by both PC services, 58 only by home-care and 91 only by hospice care. The median PCS was 24 days. TFS was significantly longer for the three groups assisted by PC (105, 95, and 82 days respectively) than for that assisted only by FP-C (49 days, p < 0.0001). Compared to PC services, FP-C was associated with higher frequency of poor quality of care indicators, such as emergency room visits (p < 0.0001), hospitalizations (p < 0.0001), hospital death (p < 0.0001) and chemotherapy administration (p < 0.0001). In addition, earlier PC referral (30-60 and > 60 days before death) versus late referral ( < 30 days before death) was associated with a lower frequency of poor quality indicators. Variables such as age, sex and primary tumor were not associated with a different quality of care. Conclusions: Pts referred to PC services, compared to pts referred only to FP-C, had improved EoL survival and quality of care. A better definition of PC referral timing can affect the quality of EoL care in cancer pts.

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