scholarly journals End of Life Care in the Home: Supporting and Sustaining Family Carers

2021 ◽  
Author(s):  
◽  
Jacqueline Rose Bowden-Tucker
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Palliative Care Service ◽  
Ageing Population ◽  
Life Care ◽  
Family Carers ◽  
Home Death

<p>Palliative care services within New Zealand aim to support care for terminally ill people and their family/ whānau, regardless of their disease or place of care. Increasingly consumers prefer that this care and support, including end of life care, is provided in their own home as opposed to hospital or care institutions and current health policies support this trend. The availability of family carers is widely acknowledged as pivotal to home palliation by ensuring physical care and emotional support for the patient is available outside that provided by formal (paid) carers and palliative care professionals entering the home. Literature searched found that family carers feel under prepared for their role and desire more support and information from health care professionals. How to achieve this is less clear. When considered against the backdrop of an ageing population and geographically dispersed families, it is forecast there will be increased incidence of dying patients with complex palliative care needs and a reduced carer population that may make the preference for home death increasingly problematic. Using purposive sampling techniques, six bereaved family carers, who were enrolled with a hospice palliative care service (HPCS) and had supported end of life care of a relative at home, were recruited. Utilising qualitative descriptive methodology this study sought to identify the key conditions under which their caring contribution was sustained. Data collection was by way of semi-structured interviews that were audiotaped and transcribed. Following coding, transcripts underwent qualitative content analysis and revealed three key themes and associated subthemes relating to: perception and acquisition of caring role; sustaining the role; now and looking back. Conclusions drawn from this research offer increased understanding of the enabling factors family carers experienced as supporting them in their role and achieving a home death for their relative.</p>

scholarly journals End of Life Care in the Home: Supporting and Sustaining Family Carers

2021 ◽  
Author(s):  
◽  
Jacqueline Rose Bowden-Tucker
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Palliative Care Service ◽  
Ageing Population ◽  
Life Care ◽  
Family Carers ◽  
Home Death

<p>Palliative care services within New Zealand aim to support care for terminally ill people and their family/ whānau, regardless of their disease or place of care. Increasingly consumers prefer that this care and support, including end of life care, is provided in their own home as opposed to hospital or care institutions and current health policies support this trend. The availability of family carers is widely acknowledged as pivotal to home palliation by ensuring physical care and emotional support for the patient is available outside that provided by formal (paid) carers and palliative care professionals entering the home. Literature searched found that family carers feel under prepared for their role and desire more support and information from health care professionals. How to achieve this is less clear. When considered against the backdrop of an ageing population and geographically dispersed families, it is forecast there will be increased incidence of dying patients with complex palliative care needs and a reduced carer population that may make the preference for home death increasingly problematic. Using purposive sampling techniques, six bereaved family carers, who were enrolled with a hospice palliative care service (HPCS) and had supported end of life care of a relative at home, were recruited. Utilising qualitative descriptive methodology this study sought to identify the key conditions under which their caring contribution was sustained. Data collection was by way of semi-structured interviews that were audiotaped and transcribed. Following coding, transcripts underwent qualitative content analysis and revealed three key themes and associated subthemes relating to: perception and acquisition of caring role; sustaining the role; now and looking back. Conclusions drawn from this research offer increased understanding of the enabling factors family carers experienced as supporting them in their role and achieving a home death for their relative.</p>

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).

scholarly journals The facilitators and challenges of dying at home with dementia: A narrative synthesis

2018 ◽  
Vol 32 (6) ◽  
pp. 1042-1054 ◽  
Author(s):  
Caroline Mogan ◽  
Mari Lloyd-Williams ◽  
Karen Harrison Dening ◽  
Christopher Dowrick
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Narrative Synthesis ◽  
Life Care ◽  
Eligibility Criteria ◽  
People With Dementia ◽  
Care At Home ◽  
At Home

Background: It is reported that, given the right support, most people would prefer to die at home, yet a very small minority of people with dementia do so. At present, knowledge gaps remain on how best to support end-of-life care at home for people with dementia. Aim: To identify and understand the challenges and facilitators of providing end-of-life care at home for people with dementia. Design: Narrative synthesis of qualitative and quantitative data. Data sources: The review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A systematic literature search was conducted across six electronic databases (AMED, BNI, CINAHL, EMBASE, MEDLINE and PsycINFO) and reference lists of key journals were searched up to July 2017. Results: Searches returned 1949 unique titles, of which seven studies met all the eligibility criteria (four quantitative and three qualitative). Six key themes were identified – four facilitators and two challenges. Facilitators included ‘support from health care professionals’, ‘informal caregiver resilience and extended social networks’, ‘medications and symptom management’ and ‘appropriate equipment and home adaptations’. Challenges included ‘issues with professional services’ and ‘worsening of physical or mental health’. Conclusion: People with dementia may not always require specialist palliative care at the end of life. Further research is required to overcome the methodological shortcomings of previous studies and establish how community development approaches to palliative care, such as compassionate communities, can support families to allow a greater number of people with dementia to die at home.

scholarly journals Spiritual care provided by nursing home physicians: a nationwide survey

2019 ◽  
Vol 10 (4) ◽  
pp. e42-e42 ◽  
Author(s):  
Marie-José H E Gijsberts ◽  
Jenny T van der Steen ◽  
Cees M P M Hertogh ◽  
Luc Deliens
Keyword(s):  
Palliative Care ◽  
Nursing Home ◽  
End Of Life ◽  
Spiritual Care ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Elderly Care ◽  
Life Care ◽  
Additional Training ◽  
Broad Concept

ObjectiveTo examine perceptions and experiences regarding providing spiritual care at the end of life of elderly care physicians practising in nursing homes in the Netherlands, and factors associated with spiritual care provision.MethodsA cross-sectional survey was sent to a representative sample of 642 elderly care physicians requesting information about their last patient who died and the spiritual care they provided. We compared their general perception of spiritual care with spiritual and other items abstracted from the literature and variables associated with the physicians’ provision of spiritual care. Self-reported reasons for providing spiritual care were analysed with qualitative content analysis.ResultsThe response rate was 47.2%. Almost half (48.4%) provided spiritual end-of-life care to the last resident they cared for. Half (51.8%) identified all 15 spiritual items, but 95.4% also included psychosocial items in their perception of spirituality and 49.1% included other items. Physicians who included more non-spiritual items reported more often that they provided spiritual care, as did more religious physicians and those with additional training in palliative care. Reasons for providing spiritual care included a request by the resident or the relatives, resident’s religiousness, fear of dying and involvement of a healthcare chaplain.ConclusionMost physicians perceived spirituality as a broad concept and this increased self-reported spiritual caregiving. Religious physicians and those trained in palliative care may experience fewer barriers to providing spiritual care. Additional training in reflecting upon the physician’s own perception of spirituality and training in multidisciplinary spiritual caregiving may contribute to the quality of end-of-life care for nursing home residents.

scholarly journals Establishment of Palliative and End-of-Life Care Services in Sri Lanka

2019 ◽  
Vol 34 (s1) ◽  
pp. s127-s128
Author(s):  
Clifford Perera ◽  
Udayangani Ramadasa ◽  
Chandrika Wijeratne ◽  
Panduka Karunanayake ◽  
Thashi Chang ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Sri Lanka ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Task Force ◽  
Steering Committee ◽  
Life Care ◽  
Care Services

Introduction:Sri Lanka has a rapidly aging population with an exponential rise in chronic morbidity. There had been no parallel development of palliative and end-of-life care-specific approach in health care.Aim:To implement sustainable palliative and end-of-life care services in Sri Lanka through the existing systems and resources by advocacy, collaboration, and professional commitment.Methods:Sri Lanka Medical Association established a volunteer task force for palliative and end-of-life care (PCTF) in October 2016, which comprised of multi-disciplinary health care professionals, legal fraternity, and civil society. PCTF identified the need for sensitizing the general public on the importance of palliative care, for standard guidelines and formal training for practicing health care professionals engaged in hospital and community-based palliative care. These needs are addressed through activities of PCTF in collaboration with the Ministry of Health.Results:Representing the National Steering Committee of Palliative Care, the members of the PCTF were instrumental in developing the National Strategic Framework to fill the major gap of affordable quality palliative care in the country. PCTF also published the “Palliative Care Manual for Management of Non-Cancer Patients” as a preliminary guide for health care professionals. The draft document on the End-of-Life Care Guidelines has been formulated and is currently being reviewed by the relevant medical and legal stakeholders. PCTF has organized CME lectures on palliative care all over the country for health care professionals, and also conducted lectures, exhibitions, and mass media programs to sensitize the public on palliative care.Discussion:Within a brief period, PCTF has played a key role to recognize palliative care by contributing to policy making, training, and public sensitization in palliative and end-of-life care in Sri Lanka.

Aggressiveness of end-of-life care before and after the utilization of a palliative care service.

2011 ◽  
Vol 29 (15_suppl) ◽  
pp. 9135-9135
Author(s):  
W. Gonsalves ◽  
T. Tashi ◽  
T. Davies ◽  
S. Ortman ◽  
R. Thota ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Life Care ◽  
Before And After

Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home

2017 ◽  
Vol 16 (3) ◽  
pp. 260-268 ◽  
Author(s):  
Yoko Naoki ◽  
Yoshinobu Matsuda ◽  
Isseki Maeda ◽  
Hideka Kamino ◽  
Yoko Kozaki ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
End Of Life Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Family Satisfaction ◽  
Life Care ◽  
Care At Home

ABSTRACTObjective:Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.Method:Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.Results:Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = −0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = −0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.Significance of results:Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.

scholarly journals Exploring an integrated palliative care model for older people: an integrative review

2019 ◽  
Vol 27 (2) ◽  
pp. 111-122 ◽  
Author(s):  
Marina Raco ◽  
Teresa Burdett ◽  
Vanessa Heaslip
Keyword(s):  
Palliative Care ◽  
Global Health ◽  
Older People ◽  
End Of Life ◽  
Integrated Care ◽  
End Of Life Care ◽  
Integrative Review ◽  
Ageing Population ◽  
Life Care ◽  
Content Type

Purpose Due to an international ageing population, global health organisations have recognised the challenges arising from fragmented interaction between health and social sectors in the end of life care. The purpose of this paper is to explore the existing literature on integrative palliative care services for older people. Design/methodology/approach An integrative review was conducted using the Preferred Reporting Items for Systematic reviews and Meta-Analyses. Papers included in the review focused upon integrated care within palliative care systems (January 2007–2017). A certain number of papers were excluded when the review focused on individuals younger than 65, not written in English and not being focused on integrated palliative care. Findings Nine studies fitted the inclusion criteria and three themes were identified: person-centred care, co-ordination of care, and education and training. The review identifies that integrated palliative care requires co-ordinated techniques that focus upon the quality of life, individual needs and awareness of vulnerability rather than fixation on inevitable mortality. Research limitations/implications The emerging presence of the need for integrated palliative care requires further research in order to develop coherent models of integrated palliative care which can be incorporated into practice. Originality/value This review identified themes relevant to the emerging issues in the global health sector of end of life care. The literature suggests that the optimised use of an integrated care approach to a palliative model of care is required and in need of further investigation.

Predictors of home death and the quality of end-of-life care at a cancer center in Brazil.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e24004-e24004
Author(s):  
Sarah Gomes ◽  
Danielle Silva ◽  
Júlia Sá ◽  
Thais Passarini ◽  
Matheus Viana ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
End Of Life Care ◽  
Palliative Care Team ◽  
Cancer Center ◽  
Life Care ◽  
Home Death

e24004 Background: Early palliative care has shown an improvement in the quality of life of cancer patients by reducing overtreatment at the end of life and improving symptomatic control. Little is known about the quality of death in developing countries. End-of-life cancer care varies widely, and very few centers evaluate it systematically. The aim of the present study is to analyze the impact of follow-up of cancer patients by an outpatient palliative care team (OPCT) on the end-of-life outcomes at a Cancer Center in Brazil. Methods: We retrospectively retrieved data from electronic medical records of cancer patients who were treated at a Cancer Center in Brazil and who died from cancer or associated complications during the year of 2020. They were divided into two groups: OPCT and No-OPCT. OPCT group was followed-up by a multidisciplinary team composed of physician, nurse, physiotherapist, psychologist, nutritionist, social worker, speech-language therapist, and pharmacist, who regularly evaluated cancer patients during their treatments at outpatient setting. During COVID-19 pandemic, some patients were evaluated by telemedicine appointments. No-OPCT group was followed-up by cancer physicians exclusively. We performed univariate comparisons and multivariate analysis by Cox proportional hazards model. p < 0.05 was deemed as statistically significant. Results: A total of 315 patients were included in the study: OPCT (N=122) and No-OPCT (N=193). The groups were well balanced in relation to median age (61yo vs 63yo), gender (women: 51% vs 54%), and TNM stage (stage IV: 69% vs 65%). Gastrointestinal and breast cancers were the most prevalent. The rate of home death was 44% in the OPCT group, compared to 16% in the No-OPCT group (p<0.001). The rate of admission in intensive care unit in the last 30 days of life (ICU30) was 13% vs 10%, respectively (p=0.413). Likewise, the rate of patients treated with chemotherapy in the last 30 days of life (CT30) was 42% vs 51% (p=0.146). In multivariate analysis, follow-up by the OPCT was the strongest independent predictor of home death (Table). In contrast, ICU30 and CT30 were inversely correlated with this outcome. Age, gender, and TNM stage did not have influence on the place of death. Conclusions: Follow-up by an OPCT had a strong positive impact on end-of-life care of cancer patients in a country which does not have Hospice culture. The OPCT was able to offer home death to a greater number of patients, with proximity to caregivers, and respect to their beliefs and values. Our data highlight the importance of early conversations about goals of care, prognostic awareness, and end-of-life preferences, while also reinforcing the need of early referral to a palliative care team.[Table: see text]

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