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

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.

2020 ◽  
Vol 28 (4) ◽  
pp. 327-336
Author(s):  
Áine Carroll

PurposeIn Northern Ireland, access to good quality palliative care is an accepted and expected part of modern cancer care. The “Transforming Your Palliative and End of Life Care” programme “supports the design and delivery of coordinated services to enable people with palliative and end of life care needs to have choice in their place of care, greater access to services and improved outcomes at the end of their lives”. The purpose of this autoethnography is to share the author’s lived experience so that it might be used to improve services.Design/methodology/approachAutoethnography is employed as the research method. The author describes her experience of caring for father over the last six months of his life. She explores the tensions between the different players involved in the care of her father and the family and the internal conflict that developed within her as daughter, carer, care coordinator and doctor. Using multiple data sources, selected data entries were explored through reflexive, dyadic interviews to explore the experience and meaning in each story.FindingsThe author found that autoethnography was a powerful tool to give voice to the carer experience. Narration can be a powerful tool for capturing the authentic lived experiences of individuals and families and is a tool seldom utilised in integrated care. This account provides an insight into the author's expectations of integrated palliative care, as a designer and implementer and now an academic in integrated care and concludes with some reflections about the gap between policy and practice in palliative care services in Northern Ireland.Originality/valueAutoethnography can be a powerful tool for capturing the authentic lived experiences of individuals and families and is an essential component of the quadruple aim.


2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii17-iii65
Author(s):  
Aoife McFeely ◽  
Cliona Small ◽  
Susan Hyland ◽  
Jonathan O'Keeffe ◽  
Graham Hughes ◽  
...  

Abstract Background Older people living in nursing homes (NHs) are among the most frail and vulnerable in our community. Over the last 5 years, a review of our local NH admission database revealed a 7% increase in the number of unscheduled hospital attendances from NHs (1015 in 2012/13 vs 1435 in 2016/17). Additionally we have seen an increase in the number of NH residents experiencing ≥2 unscheduled re-admissions within one year (21.1% in 2012/13 vs 30.45% in 2016/17). Our aim was to examine the proportion of patients from NHs who died within 24 hours of presentation, prompting a review of methods that could prevent inappropriate hospital transfers and promoting dignified and comfortable end of life care. Methods A prospective database was collected between 01/01/2016 - 31/12/2017. This recorded all emergency admissions of older people from NHs recording length of stay, readmission rates and mortality. The data was retrospectively analysed, looking specifically at patients who died in hospital ≤ 24 hours Results Of 1435 ED admissions, 49 patients (3.4%) died in hospital ≤ 24 hours after presentation. Of these, 31 patients (61%) died in palliative care suites. 8 patients (16.3%) died in the ED. Conclusion A small number of NH residents presenting to our hospital died within 24 hours. A large proportion of these patients died in a palliative care suite, suggesting poor prognosis was identified rapidly after presentation. We wonder if some of these hospital transfers were avoidable and could certain patients have experienced less disruptive deaths in their NHs? Advanced Care Planning can be difficult for all involved. However, it plays an essential role in ensuring people receive the right care, at the right time, in the right place, from the right team. We support the collaborative roles of a palliative care CNS or Geriatric ANP, and integration with NH Outreach services, to facilitate early decision-making and promote better end of life care.


2017 ◽  
Vol 30 (2) ◽  
pp. 184-193 ◽  
Author(s):  
Karen Gillett ◽  
Liz Reed ◽  
Liz Bryan

Purpose The purpose of this paper is to describe the delivery of facilitated action learning sets as an integral component of a multidisciplinary end-of-life care course. Design/methodology/approach The educational intervention described in this paper is delivered by specialist palliative care practitioners to those working with dying patients and their families in non-specialist settings. The programme consists of two components: the first taught/experience-based component takes place in a hospice. The second integral component involves action learning sets which are facilitated by specialist palliative care staff over a six-month period. This paper reports the challenges, learning and benefits of using action learning sets to improve end-of-life care. Findings Action learning sets provide support which enables staff to implement changes to end-of-life care. Participants in the successful action learning sets were motivated to change practice and identified themselves as change agents. Management support was vital to allow participants the authority to implement changes to practice. Practical implications Facilitators need to gain participant and management commitment to the action learning process before the programme begins if they are to be successful in achieving changes to end-of-life care. Originality/value Hospices and other health care organisations work in partnership to deliver this programme, and this paper demonstrates how action learning sets can increase mutual understanding and communication between specialist and non-specialist end-of-life care settings.


2021 ◽  
Author(s):  
◽  
Jacqueline Rose Bowden-Tucker

<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>


2021 ◽  
Author(s):  
◽  
Jacqueline Rose Bowden-Tucker

<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>


2018 ◽  
Vol 34 (1) ◽  
pp. 52-61 ◽  
Author(s):  
Carolina Gustafson ◽  
Mark Lazenby

The objective of this review was to detail the experiences of Muslim oncology patients receiving palliative and end-of-life care and identify where gaps in the providing of culturally aware care occur. We also sought to examine ways in which providers could be better educated on the needs of Muslim patients at the end-of-life and identify barriers Muslims faced when being treated with hospice and palliative care models developed for non-Muslim populations. We conducted a search in April 2018 in the National Library of Medicine and CINAHL databases using the search terms “palliative care,” “Muslim,” and “cancer.” Included were articles with focuses on adult Muslims with palliative and end-of-life care experiences. We then followed the PRISMA guidelines for an integrative review and used a data extraction matrix to identify 20 papers that met the inclusion criteria of the review. We identified four major themes patient experiences, patient care delivery suggestions, Muslim provider experiences, and definitions of death, present in all 20 papers of the review. Each of the included papers was categorized based on the dominant theme in the paper. This review ultimately found that the care provided to Muslim patients is subpar for the standard of culturally competent care and that the needs of Muslim patients at the end-of-life, as well as the needs of their families, are not being met. Moving forward further research on this topic is needed with a particular focus on examining the experiences of terminally ill Muslim patients receiving treatment in non-Muslim majority settings.


2019 ◽  
Vol 19 (4) ◽  
pp. 512
Author(s):  
Ascensión Doñate-Martínez ◽  
Jorge Garcés ◽  
Soledad Giménez ◽  
Bernardo Valdivieso ◽  
Elisa Soriano ◽  
...  

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S668-S668
Author(s):  
Tess H Moeke-Maxwell ◽  
Kathleen R Mason ◽  
Merryn Gott

Abstract Older indigenous people and their families draw on specific tribal care customs to support end-of-life care as these help to fortify and strengthen older people. New Zealand’s health and palliative care services can either help or hinder families to utilise their care customs. The aim of the Pae Herenga study was to investigate the specific traditional care customs employed by older New Zealand Māori. This involved 60 face-to-face interviews with participants who had a life limiting illness (majority aged over 65), family carers, indigenous healers, spiritual practitioners, and health and palliative care professionals across four key geographical sites. Three digital story workshops involving 16 participants were also included. The study findings show that no matter what the older person’s illness was, their cultural customs and protocols helped to fortify them and kept them spiritually safe at end-of-life. Hospitals and hospices helped families to action their customs by providing rooms large enough to host gatherings of thirty or more people; prayers, songs, speechmaking and communal sharing of food took place. However, incidences of racism, a lack of space, and a lack of support for indigenous plant medicines prevented the use of ancient traditional end-of-life care customs for older people. The findings suggest that health and palliative care services can help older indigenous people maintain their spiritual strength by providing them with culturally supportive care and environments equipped to host the dying and their families.


2014 ◽  
Vol 10 (3) ◽  
pp. 172-197 ◽  
Author(s):  
Tina Maschi ◽  
Suzanne Marmo ◽  
Junghee Han

Purpose – The growing numbers of terminally ill and dying in prison has high economic and moral costs as global correctional systems and the society at large. However, to date little is known about the extent to which palliative and end-of-life care is infused within global prison health care systems. The purpose of this paper is to fill a gap in the literature by reviewing and critically appraising the methods and major findings of the international peer-reviewed literature on palliative and end-of-life care in prison, identify the common elements of promising palliative and end-of-life services in prison, and what factors facilitate or create barrier to implementation. Design/methodology/approach – A content analysis was conducted of the existing peer-reviewed literature on palliative and end-of-life care in prison. English-language articles were located through a comprehensive search of peer-reviewed journals, such as Academic Search Premier Literature databases using differing combinations of key word search terms, “prison,” “palliative care,” and “end-of-life care.” A total of 49 studies published between 1991 and 2013 met criteria for sample inclusion. Deductive and inductive analysis techniques were used to generate frequency counts and common themes related to the methods and major findings. Findings – The majority (n=39) of studies were published between 2001-2013 in the USA (n=40) and the UK (n=7). Most were about US prison hospice programs (n=16) or barriers to providing palliative and end of life care in prisons (n=10). The results of the inductive analysis identified common elements of promising practices, which included the use of peer volunteers, multi-disciplinary teams, staff training, and partnerships with community hospices. Obstacles identified for infusing palliative and end-of-life care in prison included ethical dilemmas based on custody vs care, mistrust between staff and prisoners, safety concerns, concern over prisoners’ potential misuse of pain medication, and institutional, staff, and public apathy toward terminally ill prisoners and their human rights to health in the form of compassionate and palliative care, including the use of compassionate release laws. Research limitations/implications – Implications for future research that foster human rights and public awareness of the economic and moral costs of housing the sick and dying in prisons. More research is needed to document human rights violations as well as best practices and evidence-based practices in palliative and end-of-life care in prisons. Future studies should incorporate data from the terminally ill in prison, peer supports, and family members. Future studies also should employ more rigorous research designs to evaluate human rights violations, staff and public attitudes, laws and policies, and best practices. Quantitative studies that use experimental designs, longitudinal data, and multiple informants are needed. Qualitative data would allow for thick descriptions of key stakeholders experiences, especially of the facilitators and barriers for implementing policy reform efforts and palliative care in prisons. Practical implications – This review provides a foundation on which to build on about what is known thus far about the human right to health, especially parole policy reform and infusing palliative and end-of-life care for the terminally ill and dying in prisons. This information can be used to develop or improve a new generation research, practice, policy, and advocacy efforts for that target terminally ill and dying in prison and their families and communities. Social implications – There are significant social implications to this review. From a human rights perspective, the right to freedom from torture and cruel and unusual punishment is a fundamental human right along with prisoners’ rights for an appropriate level of health care. These rights should be guaranteed regardless of the nature of their crime or whether they are in a prison placement. The information provided in this review can be used to educate and possible transform individual's and society's views toward the terminally ill and dying who are involved in the criminal justice system. Originality/value – This paper extends the extant literature by using both quantitative and qualitative analysis methods to organize, summarize, and critically analyze the international literature on palliative care and end of life care in prison. This review is designed to increase awareness among the international community of the pain and suffering of the terminally ill in prison and the facilitators and barriers to providing them compassionate care while in custody.


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