scholarly journals A national survey of ambulance paramedics on the identification of patients with end of life care needs

2020 ◽  
Vol 5 (3) ◽  
pp. 8-14
Author(s):  
Peter Eaton-Williams ◽  
Jack Barrett ◽  
Craig Mortimer ◽  
Julia Williams
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Free Text ◽  
Life Care ◽  
Multiple Choice Questions ◽  
Care Needs ◽  
Online Questionnaire ◽  
Monthly Basis ◽  
Communication Difficulties ◽  
Improve Access

<sec id="s1">Objectives: Developing the proactive identification of patients with end of life care (EoLC) needs within ambulance paramedic clinical practice may improve access to care for patients not benefitting from EoLC services at present. To inform development of this role, this study aims to assess whether ambulance paramedics currently identify EoLC patients, are aware of identification guidance and believe this role is appropriate for their practice. </sec> <sec id="s2">Methods: Between 4 November 2019 and 5 January 2020, registered paramedics from nine English NHS ambulance service trusts were invited to complete an online questionnaire. The questionnaire initially explored current practice and awareness, employing multiple-choice questions. The Gold Standards Framework Proactive Identification Guidance (GSF PIG) was then presented as an example of EoLC assessment guidance, and further questions, permitting free-text responses, explored attitudes towards performing this role. </sec> <sec id="s3">Results: 1643 questionnaires were analysed. Most participants (79.9%; n = 1313) perceived that they attended a patient who was unrecognised as within the last year of life on at least a monthly basis. Despite 72.0% (n = 1183) of paramedics indicating that they had previously made an EoLC referral to a General Practitioner, only 30.5% (n = 501) were familiar with the GSF PIG and of those only 25.9% (n = 130) had received training in its use. Participants overwhelmingly believed that they could (94.4%; n = 1551) and should (97.0%; n = 1594) perform this role, yet current barriers were identified as the inaccessibility of a patient’s medical records, inadequate EoLC education and communication difficulties. Consequently, facilitators to performing this role were identified as the provision of training in EoLC assessment guidance and establishing accessible, responsive EoLC referral pathways. </sec> <sec id="s4">Conclusions: Provision of EoLC assessment training and dedicated EoLC referral pathways should facilitate ambulance paramedics’ roles in the timely recognition of EoLC patients, potentially addressing current inequalities in access to EoLC. </sec>

scholarly journals A national survey of ambulance paramedics on the identification of patients with end of life care needs

2021 ◽  
Vol 5 (4) ◽  
pp. 60-61
Author(s):  
Peter Eaton-Williams ◽  
Jack Barrett ◽  
Craig Mortimer ◽  
Julia Williams
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Primary Care Providers ◽  
Free Text ◽  
Life Care ◽  
Care Providers ◽  
Care Needs ◽  
Online Questionnaire ◽  
Communication Difficulties ◽  
Assessment Training

<sec id="s1"> Aims: Developing the proactive identification of patients with end of life care (EoLC) needs within ambulance paramedic clinical practice may improve access to care for patients not benefitting from EoLC services at present. To inform development of this role, this study aims to assess whether ambulance paramedics currently identify EoLC patients, are aware of identification guidance and believe this role is appropriate for their practice. </sec> <sec id="s2"> Methods: Between 4 November 2019 and 5 January 2020, registered paramedics from nine English NHS ambulance service trusts were invited to complete an online questionnaire. The questionnaire initially explored current practice and awareness, employing multiple-choice questions. The Gold Standards Framework Proactive Identification Guidance (GSF PIG) was then presented as an example of EoLC assessment guidance and further questions, permitting free-text responses, explored attitudes towards performing this role. </sec> <sec id="s3"> Results: 1643 questionnaires were analysed. Most participants (79.9%; n = 1313) perceived that they attended a patient who was formally unrecognised as within the last year of life on at least a monthly basis. Despite 72.0% (n = 1183) of paramedics indicating that they had previously made an EoLC referral to a General Practitioner (GP), only 30.5% (n = 501) were familiar with the GSF PIG and of those only 25.9% (n = 130) had received training in its use. Participants overwhelmingly believed that they can (94.4%; n = 1551) and should (97.0%; n = 1594) perform this role, yet current barriers were identified as the inaccessibility of a patient’s medical records, inadequate EoLC education and communication difficulties. Consequently, facilitators to performing this role were identified as the provision of further training in EoLC assessment guidance and establishing accessible, responsive EoLC referral pathways. </sec> <sec id="s4"> Conclusion: Ambulance paramedics frequently encounter patients that they perceive are not receiving appropriate EoLC provision, and participants in this study overwhelmingly supported a role in highlighting this to primary care providers. Though many paramedics are already making referrals for these patients, the majority are performed without knowledge of validated EoLC assessment guidance. Provision of EoLC assessment training might therefore be expected to improve the timeliness and sensitivity of referrals, potentially addressing current inequalities in access to EoLC. The communication difficulties currently encountered when making a referral might be addressed by the provision of dedicated EoLC referral pathways. Future qualitative and quantitative evaluation of local initiatives providing both assessment training and referral pathways would be hugely beneficial for revealing the benefits and barriers associated with the development of this role in practice. </sec>

scholarly journals We Want More Than Life-Sustaining Treatment during End-of-Life Care: Focus-Group Interviews

2021 ◽  
Vol 18 (9) ◽  
pp. 4415
Author(s):  
Mirinae Kim ◽  
Minju Kim
Keyword(s):  
Focus Group ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Treatment Needs ◽  
Focus Group Interviews ◽  
Care Needs ◽  
Basic Care ◽  
Life Sustaining Treatment ◽  
Group Interviews

We qualitatively investigated end-of-life care needs. Data were collected via focus-group interviews with three groups: young adults, middle-aged adults, and older adults. The key question was, “What kind of care would you like to receive at the end of life?” Interview data were transcribed and analyzed using content analysis. End-of-life care needs were classified into six categories: life-sustaining treatment needs, physical care needs, emotional care needs, environmental needs, needs for respect, and needs for preparation for death. Because the Korean culture is family-oriented and talking about death is taboo, Korean patients at the end of their life do not make decisions about life-sustaining treatment or actively prepare for death. Therefore, to provide proper end-of-life care, conversations and shared decision-making among patients and their families are crucial. Further, we must respect patients’ dignity and help them achieve a good death by understanding patients’ basic care preferences. Future research should continue examining end-of-life care needs that reflect the social and cultural context of Korea to inform instrument development.

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).

Pulmonary referrals to specialist palliative medicine: a survey

2021 ◽  
pp. bmjspcare-2021-003386
Author(s):  
Michael Bonares ◽  
Kenneth Mah ◽  
David Christiansen ◽  
John Granton ◽  
Andrea Weiss ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Chronic Respiratory Disease ◽  
Life Care ◽  
Care Needs ◽  
Patients With Cancer ◽  
Referral Criteria ◽  
Referral Practices ◽  
Palliative Care Needs

ObjectivesPatients with chronic respiratory disease have significant palliative care needs, but low utilisation of specialist palliative care (SPC) services. Decreased access to SPC results in unmet palliative care needs among this patient population. We sought to determine the referral practices to SPC among respirologists in Canada.MethodsRespirologists across Canada were invited to participate in a survey about their referral practices to SPC. Associations between referral practices and demographic, professional and attitudinal factors were analysed using regression analyses.ResultsThe response rate was 64.7% (438/677). Fifty-nine per cent of respondents believed that their patients have negative perceptions of palliative care and 39% were more likely to refer to SPC earlier if it was renamed supportive care. While only 2.7% never referred to SPC, referral was late in 52.6% of referring physicians. Lower frequency of referral was associated with equating palliative care to end-of-life care (p<0.001), male sex of respirologist (p=0.019), not knowing referral criteria of SPC services (p=0.015) and agreement that SPC services prioritise patients with cancer (p=0.025); higher referral frequency was associated with satisfaction with SPC services (p=0.001). Late referral was associated with equating palliative care to end-of-life care (p<0.001) and agreement that SPC services prioritise patients with cancer (p=0.013).ConclusionsPossible barriers to respirologists’ timely SPC referral include misperceptions about palliative care, lack of awareness of referral criteria and the belief that SPC services prioritise patients with cancer. Future studies should confirm these barriers and evaluate the effectiveness of strategies to overcome them.

Managing End-of-Life Care

2012 ◽  
Author(s):  
John W. Albarran ◽  
Marika Hills
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Delivery ◽  
Symptom Relief ◽  
Death And Dying ◽  
Past Century ◽  
Life Care ◽  
Care Needs ◽  
Definition Of ◽  
The Uk

This chapter addresses the fundamental nursing role of managing end-of-life care. Death is as fundamental a part of life as living, and while caring for a dying patient and their family is demanding, complex, and emotionally exhausting, it can also be a gratifying and privileged experience for nurses. Specifically, nurses have a centre-stage role in leading and informing care delivery at the end of life. Care will typically embrace assessing the needs of the patient and family, providing symptom relief and comfort care, and providing cultural and spiritual support. Additionally, caring functions should also extend following death to caring for the deceased in a dignified manner and supporting the newly bereaved, demonstrating genuine concern, compassion, and effective communication skills (Hills and Albarran, 2010a; Maben et al., 2010). To examine the key themes and challenges of practice, it is important to understand the political, professional and societal influences, and contextual nature of death and dying in the UK. At present, there is neither a clear nor universally accepted definition of end-of-life care, but it is generally understood to be the care of a person who is identified as having failing health and who is in a progressive state of decline (Shipman et al., 2008). Establishing the last phase of a patient’s life can be a difficult and complex process, and this might occur:…● after the diagnosis of a life-limiting condition; ● during the transition or deterioration of a chronic disease illness; ● when there is an increasing frailty combined with greater dependence on care provision, particularly in the older adult; ● following a sudden infective episode, cardiac event, or a life-threatening accident….The last phase of end-of-life care is referred to as the dying phase. Consideration of the end-of-life care needs of people with chronic terminal conditions should begin at diagnosis, and must embrace after-death care and family support. Over the past century, progress and advancement in disease management, together with improvements in living standards, have resulted in changes to the national death profile, with currently two-thirds of the 0.5 million annual deaths in the UK occurring in people over 75 years of age.

First steps: Health and social care professionals beginning to address the palliative and end of life care needs of people with diverse gender identities and sexual orientations in Lebanon

Sexualities ◽  
2020 ◽  
pp. 136346072093238
Author(s):  
Claude Chidiac
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Social Stigma ◽  
Life Care ◽  
Care Needs ◽  
Mena Region ◽  
Healthcare Needs ◽  
Health And Social Care ◽  
The Impact

The available evidence demonstrates that lesbian, gay, bisexual, and transgender (LGBT) people face challenges when accessing palliative care services, and receive suboptimal care at the end of life. This is mainly attributed to assumed heterosexuality, lack of knowledge and understanding of LGBT issues and specific healthcare needs, discrimination, homophobia, and transphobia. In Lebanon, legal and institutional support for LGBT individuals is minimal, and palliative care provision remains scarce and fragmented. This compounds the impact of social stigma and marginalisation, and results in unrecognised palliative and end of life care needs for the LGBT individual. This short commentary discusses the development of an LGBT palliative care workshop in Lebanon, which was the first initiative of its kind in the Middle East and North Africa (MENA) region. It also explores how this initiative has led to further developments, and how these efforts can be replicated in other countries in the MENA region.

scholarly journals Lower Extremity Amputation and Health Care Utilization in the Last Year of Life among Medicare Beneficiaries with ESRD

2019 ◽  
Vol 30 (3) ◽  
pp. 481-491 ◽  
Author(s):  
Catherine R. Butler ◽  
Margaret L. Schwarze ◽  
Ronit Katz ◽  
Susan M. Hailpern ◽  
William Kreuter ◽  
...  
Keyword(s):  
Health Care ◽  
Lower Extremity ◽  
End Of Life ◽  
End Of Life Care ◽  
Lower Extremity Amputation ◽  
Care Utilization ◽  
Life Care ◽  
Medicare Beneficiaries ◽  
Care Needs ◽  
Extremity Amputation

BackgroundLower extremity amputation is common among patients with ESRD, and often portends a poor prognosis. However, little is known about end-of-life care among patients with ESRD who undergo amputation.MethodsWe conducted a mortality follow-back study of Medicare beneficiaries with ESRD who died in 2002 through 2014 to analyze patterns of lower extremity amputation in the last year of life compared with a parallel cohort of beneficiaries without ESRD. We also examined the relationship between amputation and end-of-life care among the patients with ESRD.ResultsOverall, 8% of 754,777 beneficiaries with ESRD underwent at least one lower extremity amputation in their last year of life compared with 1% of 958,412 beneficiaries without ESRD. Adjusted analyses of patients with ESRD showed that those who had undergone lower extremity amputation were substantially more likely than those who had not to have been admitted to—and to have had prolonged stays in—acute and subacute care settings during their final year of life. Amputation was also associated with a greater likelihood of dying in the hospital, dialysis discontinuation before death, and less time receiving hospice services.ConclusionsNearly one in ten patients with ESRD undergoes lower extremity amputation in their last year of life. These patients have prolonged stays in acute and subacute health care settings and appear to have limited access to hospice services. These findings likely signal unmet palliative care needs among seriously ill patients with ESRD who undergo amputation as well as opportunities to improve their care.

scholarly journals CAREGIVER BURDEN, BENEFIT, AND PERCEPTIONS OF END-OF-LIFE CARE QUALITY

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S668-S668
Author(s):  
Elizabeth A Luth ◽  
Teja Pristavec
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Hospice Care ◽  
Quality Care ◽  
Care Quality ◽  
National Study ◽  
Life Care ◽  
Care Needs ◽  
Caregiving Burden ◽  
High Burden

Abstract End-of-life care quality (EOLCQ) gauges our success in providing quality care to dying individuals. EOLQC measures rely on reports from bereaved family members who provide care for dying loved ones, but analyses seldom account for how caregivers’ experiences influence their EOLCQ perceptions. Caregivers frequently experience burden, which is linked to poor health outcomes and may negatively bias EOLCQ reports. Individuals may also perceive caregiving benefits that can offset deleterious burden effects, but potentially encourage overly positive EOLCQ perceptions. This paper links National Study of Caregivers (2011) and National Health and Aging Trends Study (2011-2016) data, using regression analysis and a sample of 380 EOL caregivers to examine how caregiving burden and benefits perceptions shape and moderate EOLCQ reports. Caregiving burden is unrelated to EOLCQ in adjusted models. Benefits are associated with marginally greater odds of being informed about the dying person’s condition and reporting their personal care needs were met. Burden and benefits moderate these two measures. Despite benefits, low burden caregivers report they were informed about the dying person’s condition with 90% probability. Regardless of burden, high benefits caregivers report the same with 90% probability. Low burden and benefits caregivers report met care needs with 90% probability. High burden and benefits caregivers have 90% probability of such reports. Given these reports are used in formal hospice care evaluations by CMS, additional research should explore why caregiving burden and benefit are associated with some EOLCQ measures and why individuals reporting high burden and benefits provide more positive EOLCQ appraisals.

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