Search results for ‘Subject term:"end of life care"’ Sort:
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The ELCIDD Project: an audit of end‐of‐life care in persons with intellectual disabilities and dementia
- Authors:
- TROMANS Samuel, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 16(1), 2019, pp.88-92.
- Publisher:
- Wiley
With a rise in the life expectancy of people with intellectual disabilities in recent decades, there has been a related increase in rates of dementia. As a chronic, progressive condition dementia presents opportunities for provision of pre‐planned end‐of‐life care. This audit focussed on the level of compliance with pre‐defined end‐of‐life care standards for a group of patients with intellectual disabilities and severe dementia. Compliance with pre‐defined end‐of‐life care standards was found to be highly variable. Areas of high compliance included all 32 patients having access to their primary care physician, 84% (n = 27) having regular review by their psychiatrist and 94% (n = 30) having had a review of their medication regime. In contrast, there was only clear evidence of patient involvement in advance planning for 25% (n = 8) of patients, with similarly few patients having agreement on the use of cardiopulmonary resuscitation (22%; n = 7) a plan for supporting their carers and/or family (13%; n = 4) or a documented preferred place of death (22%; n = 7). Possible reasons for variable compliance include limited awareness of end‐of‐life care standards among ID professionals and carers, difficulties in discerning when patients are approaching the end of their lives and limited involvement of both the patient and palliative care professionals in decision‐making approaches. There is a clear need for a more structured approach for the assessment and management of these patients, and recently published guidance may help support ID professionals in this regard. (Edited publisher abstract)
Are UK primary care teams formally identifying patients for palliative care before they die?
- Authors:
- HARRISON Nadine, et al
- Journal article citation:
- British Journal of General Practice, 62(598), May 2012, pp.250-251.
- Publisher:
- Royal College of General Practitioners
UK policy advocates early detection of patients with progressive illness who could benefit from palliative care. The authors looked at the extent to which practices identify patients for palliative care, factors influencing early identification and effects on place of death. Records of patients who had died in the previous 6 months from six general practices in Scotland were analysed. Practice staff (n = 21), patients currently on the practice palliative care register, and bereaved relatives (n = 14) were interviewed and a practice meeting was observed. In total, 29% of patients who died had been on palliative care registers. Two-thirds of cancer patients were on the register, but only about 20% of those with non-malignant conditions had any palliative care documented. Reasons for this included, GPs not finding the current guidelines useful and being reluctant to discuss palliative care overtly with patients early in their illness. Palliative care services and documentation were geared towards cancer patients. More district nurses than GPs saw the benefits of inclusion on the register. Only 25% of patients on the register died in hospital. The authors conclude that most patients with advanced progressive illnesses, especially those with non-malignant disease, are not being formally identified for a palliative care. Those who are, are more likely to benefit from coordinated care and may be more likely to die at home.
Implementing the end of life care strategy: lessons for good practice
- Authors:
- ADDICOTT Rachael, ROSS Shilpa
- Publisher:
- King's Fund
- Publication year:
- 2010
- Pagination:
- 46p., bibliog.
- Place of publication:
- London
The Marie Curie Delivering Choice Programme aims to improve the quality of end of life care and to work with other service providers to ensure the establishment of a comprehensive approach able to fulfil individual patients' preferences for care as they near the end of their lives. Using evidence from The King's Fund evaluation of the Programme, this paper highlights examples of good practice and learning for the organisation and delivery of end of life care across England. It provides an overview of the 3 projects studied (the Lincolnshire, Leeds and Somerset Delivering Choice Programmes). It presents lessons for good practice using the 6 step end of life care pathway identified in the government End of Life Care Strategy published in 2008: discussions as the end of life approaches; assessment, care planning and review; co-ordination of individual patient care; delivery of high quality services in different settings; care in the last days of life; and care after death. It focuses on identification of end of life care needs, encouraging greater communication about prognosis and care planning, co-ordination of care, and a whole-systems approach to end of life care. It summarises examples of, and recommendations for, ways in which commissioners and providers of end of life care can address these challenges effectively together within the framework of the end of life care pathway.
Questioning the evidence for service assumptions: audit of transfers from a hospice to nursing home care
- Authors:
- REITH Margaret, LUCAS Caroline
- Journal article citation:
- Journal of Social Work, 8(3), July 2008, pp.233-245.
- Publisher:
- Sage
This article reports an audit of people considered for transfer from a hospice to a nursing home for end-of-life care and discusses implications for patients, families and staff. Moving patients to nursing homes at the end of their lives is often distressing for both patients and families and in many cases patients die within a short time of transfer. Few patients are actually transferred although many more are asked to face this possibility often creating unnecessary anxiety. This may have adverse consequences for family members' bereavement. There is a weak evidence base for transferring patients from hospices to nursing homes. Palliative care services assume a short in-patient stay to ration an expensive scarce resource. Assessment with social work contributions identifying complex emotional, family and bereavement consequences may allow multidisciplinary teams to justify longer hospice stays by identifying more complex needs to justify better substantive equality between patients.
End of life care: what matters to the person who's dying
- Author:
- SOCIAL CARE INSTITUTE FOR EXCELLENCE
- Publisher:
- Social Care Institute for Excellence
- Publication year:
- 2014
- Pagination:
- 11 minutes 31 seconds
- Place of publication:
- London
In this film a palliative care specialist nurse from St Joseph's Hospice, London, defines holistic assessment as an on-going process involving the physical, social, psychological and spiritual care of a person at the end of life. Through an interview with a woman with a chronic health condition, holistic assessment is shown working in practice; we see how she is supported to develop a plan which states her wishes about her end of life care. This provides clarity for the family of the person as well as her health and social care team. There is also an interview with a woman who was initially reluctant to make plans about her end of life care but, with the help of a social worker, has now done so and feels more confident and in control because she feels supported. This film was previously available under the title 'End of life care: holistic assessment' which was revised in 2014. (Edited publisher abstract)
Factors influencing adult carer support planning for unpaid caregiving at the end of life in Scotland: qualitative insights from triangulated interviews and focus groups
- Authors:
- SWAN Susan, et al
- Journal article citation:
- Health and Social Care in the Community, 30(4), 2022, pp.1422-1432.
- Publisher:
- Wiley
Caring for a relative or friend at the end of life can be rewarding but all-encompassing. These caregivers are often not identified, meaning their diverse needs remain unmet, and the lack of assessment, support and planning increases the likelihood of crisis and burnout. The Carers (Scotland) Act 2016 places responsibility on local authorities to implement such a plan, which will be fast-tracked for carers supporting someone at the end of life. Our research described the factors which might influence this planning, triangulating primary focus groups with 15 carers and secondary qualitative data from transcripts with 30 carers, all of whom who had looked after someone with a terminal illness. Analysis was iterative, and constant comparative analysis of the secondary data informed the primary focus groups. Three main themes were identified; 1. The importance of early identification as a carer to enable timely assessment and support. 2. Carers experience isolation and loneliness which limits opportunities for support. 3. Responding in a timely fashion to carer assessment and support is vital to avoid crises. This research confirms that identifying carers early in the illness trajectory, ideally at diagnosis, is vital to avoid carer burnout. Health and social care providers have a key role in identification and should ensure, where possible, that carer needs are dynamically assessed, supported and documented. Finally, caring does not end after death, it extends into bereavement. Thus, we need to consider system and cultural change to ensure the experiences and needs of carers are addressed and valued. (Edited publisher abstract)
Care home journey
- Author:
- ROYAL COLLEGE OF NURSING
- Publisher:
- Royal College of Nursing
- Publication year:
- 2019
- Place of publication:
- London
An online resource to support nursing care in older people's care homes. The resource follows a resident’s care home journey through from pre-admission to end of life. Sections include: care home admission, assessment and care planning, short stay and respite care, discharge from care, acute admission and end of life care. Each section demonstrates the role of nursing staff when supporting the resident, their families and nursing colleagues at a particular stage of the resident’s journey. The resource provides real life scenarios signposting to high quality, evidence based resources to answer the clinical questions that frequently affect those caring for older people. (Edited publisher abstract)
The psychosocial evaluation is an essential part of the pretransplant workup for patients with end-stage renal disease: a social worker’s perspective
- Author:
- SAS Courtney
- Journal article citation:
- Health and Social Work, 44(3), 2019, pp.208-211.
- Publisher:
- Oxford University Press
On the surface, it is common to assume that most patients with end-stage renal disease will get listed for a kidney transplant. Unfortunately, for many patients, this is not the case. The process of listing a patient for a transplant requires a rigorous medical examination and a mandatory psychosocial screening assessment. Clinical social workers are often asked why this assessment is important, what it accomplishes, and how it affects a patient’s ability to get listed. This column argues that the required psychosocial assessment is a key element in helping to determine whether a patient should be listed on the deceased donor transplant list. This assessment is crucial in determining a patient’s psychosocial suitability for a transplant. (Edited publisher abstract)
Capacity, care planning and advance care planning in life limiting illness: a guide for health and social care staff
- Author:
- NHS IMPROVING QUALITY
- Publisher:
- NHS Improving Quality
- Publication year:
- 2014
- Pagination:
- 36
This guide is for health and social care staff who are involved in care planning and decision making for people with life limiting illness. The guide looks at the importance of assessing a person’s capacity to make particular decisions about their care and treatment and of acting in the best interests of those who are assessed as lacking capacity to make these decisions. It also clarifies the differences and relationship between care planning and advance care planning. Sections cover capacity, including the two stage test for capacity; care planning; advance care planning and End of Life Care core competences. (Edited publisher abstract)
Patient reluctance to discuss pain: understanding stoicism, stigma, and other contributing factors
- Authors:
- CAGLE John G., BUNTING Morgan
- Journal article citation:
- Journal of Social Work in End-of-Life and Palliative Care, 13(1), 2017, pp.27-43.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia
Some patients are hesitant to disclose when they are experiencing pain. However, the reasons for this, such as stoicism and concern about being a bother to others, are poorly understood. If patient pain goes unrecognised during clinical encounters, patients may also be at greater risk for pain-related crises, use of hospice/palliative care on-call services, and in-patient transfers. This is an evidence-informed development of a practice-oriented conceptual model to understand and address patient reluctance to admit pain. The authors used a review of the available evidence to better understand the various factors that contribute to an unwillingness to disclose one’s pain, create a conceptual model, and identify relevant assessment measures that may be useful to practitioners. The review identified six primary attitudes and beliefs that contribute to patient reluctance to openly admit pain: (a) stigma; (b) stoicism; (c) cautiousness; (d) fatalism; (e) bother; and (f) denial. Four assessment measures that address elements of barriers to pain-related communication and four measures of nonverbal signs of pain were also identified and reviewed. Based on the model, social workers and other palliative care providers should consistently and vigilantly inquire about how comfortable patients are about discussing their own pain. Implications for practice and research are presented. (Edited publisher abstract)