scholarly journals Overview and audit against Motor Neurone Disease (MND) Association guidelines of a MND consultant’s practice over the last 3 years at the [Hospital]

Res Medica ◽  
2017 ◽  
Vol 24 (1) ◽  
pp. 65-74 ◽  
Author(s):  
Dominic Adam Worku ◽  
Unnat Krishna ◽  
Karen E Morrison
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Primary Care Physicians ◽  
Diagnostic Delay ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Life Care ◽  
Endoscopic Gastrostomy ◽  
Bulbar Onset ◽  
Prompt Diagnosis

Background: Motor neurone disease (MND) is an incurable neurodegenerative condition. Recent guidelines from the MND Association UK (MNDA) emphasise prompt diagnosis and monitoring of quality of life (QOL). However, primary literature indicates that diagnosis is often delayed through several factors, including unawareness of how MND presents and delays through multiple secondary referrals. The [hospital] operates an internationally-recognised MND clinic whose service has not been audited against the MNDA UK guidelines for the last 3 years.Aim: To assess how well the MND consultant’s service ensures prompt diagnosis and the provision of end-of-life care or appropriate respiratory or nutritional support.Methods: Using the [hospital’s] database, records from 77 patients consulted consecutively in the MND clinic were obtained. Service parameters were compared against reference standards for diagnostic delay and treatment provision.Results:  84.4% of referrals came from neurologists outside of the MND service, with only 13% from general practitioners. On average, it took 14.7 months for patients to be seen in the MND clinic following symptom onset. Riluzole and percutaneous endoscopic gastrostomy (PEG) were prescribed faster in bulbar-onset versus limb-onset patients, by 4 times and 9 times respectively. End-of-life care discussion was recorded for 26% of patients.Conclusion:    Diagnosing MND remains challenging for primary care physicians, which may be alleviated by disseminating recent Red Flag Committee guidelines. Investigation and treatment provision differed between MND subtypes, given the poorer prognosis associated with bulbar-onset. End-of-life care documentation remains low, which is an issue for the multi-disciplinary team (MDT) to resolve through incorporating palliative services. 

Extending choice over where patients with motor neurone disease receive end-of-life care

2006 ◽  
Vol 2 (10) ◽  
pp. 493-498 ◽  
Author(s):  
Les Storey ◽  
Pauline Callagher ◽  
Douglas Mitchell ◽  
Robert Addison-Jones ◽  
Wendy Bennett
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Life Care

scholarly journals Choosing the place of death: Empowering motor neurone disease/amyotrophic lateral sclerosis patients in end-of-life care decision making

2015 ◽  
Vol 29 (7) ◽  
pp. 667-668 ◽  
Author(s):  
Suresh Kumar Chhetri ◽  
Belinda Fay Bradley ◽  
Pauline Callagher ◽  
Robert Addison-Jones ◽  
Wendy Bennett ◽  
...  
Keyword(s):  
Decision Making ◽  
Amyotrophic Lateral Sclerosis ◽  
End Of Life ◽  
End Of Life Care ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Place Of Death ◽  
Life Care ◽  
Care Decision ◽  
Lateral Sclerosis

The Preferred Priorities for Care document in Motor Neurone Disease: Views of bereaved relatives and carers

2011 ◽  
Vol 26 (2) ◽  
pp. 132-138 ◽  
Author(s):  
Harriet Preston ◽  
Iris Cohen Fineberg ◽  
Pauline Callagher ◽  
Douglas J Mitchell
Keyword(s):  
Health Care ◽  
End Of Life ◽  
Health Care Providers ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Hospital Staff ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Life Care ◽  
Care Providers

Increasing emphasis is being placed on the need for advanced care planning (ACP) at the end of life. The Preferred Priorities for Care (PPC) document is a patient-held record promoted by the End of Life Care Strategy as an ACP tool to promote discussion and communication amongst patients, family and health care providers. However, little research exists into evaluating its effectiveness or exploring patient and carer views, particularly in non-malignant disease. Because the majority of patients with Motor Neurone Disease (MND) lose verbal communication, early discussion of patients’ wishes and preferences, a central aspect of ACP, is vital. This study examined MND patients’ bereaved relatives’ experiences of using the PPC document and their perceptions about its impact on end-of-life care using qualitative methods. Key findings adding to existing literature were that the PPC document was felt to have little impact on end-of-life care amongst this patient group and that there was a perceived lack of awareness of the document amongst health care professionals (HCPs), in particular hospital staff. This was felt to limit the effectiveness of the document. This has obvious implications for practice, looking at awareness amongst HCPs and ways to improve this situation, particularly in light of the current pressures to meet patient preferences at the end of life.

scholarly journals Primary care physicians’ educational needs and learning preferences in end of life care: A focus group study in the UK

2017 ◽  
Vol 16 (1) ◽  
Author(s):  
Lucy Ellen Selman ◽  
Lisa Jane Brighton ◽  
Vicky Robinson ◽  
Rob George ◽  
Shaheen A. Khan ◽  
...  
Keyword(s):  
Primary Care ◽  
Focus Group ◽  
End Of Life ◽  
End Of Life Care ◽  
Primary Care Physicians ◽  
Educational Needs ◽  
Learning Preferences ◽  
Life Care ◽  
Focus Group Study ◽  
The Uk

Physician perspectives on end-of-life care: Factors of race, specialty, and geography

2006 ◽  
Vol 4 (3) ◽  
pp. 257-271 ◽  
Author(s):  
CINDY L. CARTER ◽  
JANE G. ZAPKA ◽  
SUZANNE O'NEILL ◽  
SUSAN DesHARNAIS ◽  
WINNIE HENNESSY ◽  
...  
Keyword(s):  
Primary Care ◽  
African American ◽  
End Of Life ◽  
Racial Differences ◽  
End Of Life Care ◽  
Urban Areas ◽  
Primary Care Physicians ◽  
Working Relationships ◽  
Life Care ◽  
Physician Perspectives

Objectives: To describe physicians' end-of-life practices, perceptions regarding end-of-life care and characterize differences based upon physician specialty and demographic characteristics. To illuminate physicians' perceptions about differences among their African-American and Caucasian patients' preferences for end-of-life care.Design and methods: Twenty-four African-American and 16 Caucasian physicians (N= 40) participated in an in-person interview including 23 primary care physicians, 7 cardiologists, and 10 oncologists. Twenty-four practices were in urban areas and 16 were in rural counties.Results: Physicians perceived racial differences in preferences for end-of-life care between their Caucasian and African-American patients. Whereas oncologists and primary care physicians overwhelmingly reported having working relationships with hospice, only 57% of cardiologists reported having those contacts. African-American physicians were more likely than Caucasian physicians to perceive racial differences in their patients preferences for pain medication.Significance of results: Demographic factors such as race of physician and patient may impact the provider's perspective on end-of-life care including processes of care and communication with patients.

US, Russian and Indian physician perspectives regarding end of life care

2020 ◽  
Vol 24 (3) ◽  
pp. 11-20
Author(s):  
James G. Jackson ◽  
Sheetal Moolambally Raj ◽  
Yulia Matveeva ◽  
Yinghui Xu ◽  
Gerald J. Jogerst
Keyword(s):  
Primary Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Primary Care Physicians ◽  
Terminal Illness ◽  
Life Care ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Chi Squared ◽  
Dichotomous Variables

Aim. To compare US, Russian and Indian primary care physicians attitudes, comfort and experiences providing palliative care. Design. Cross sectional survey. Settings. Iowa, USA; Leningrad Oblast, Russia; Mangalore, India. Participants. Primary care physicians. Methods. Chi-squared testing for dichotomous variables and t-tests for mean scores. Results. 66 US, 81 Russian and 95 Indian physicians completed the survey. More US physicians preferred end of life care at home (83% v 56% Russian and 29% Indian) p 0.001 and Indian physicians preferring hospitals (36% v 0% US and 1% Russian) p 0.001. 94% percent of US physicians preferred patient make their own decisions, 57% of Russian sample preferred physicians as decision makers, and Indian physicians preferred family members to patients themselves (44%) p 0.001. Patient should be informed (US vs Russia vs India) of terminal illness Always (74% vs 31% vs 33%) p 0.001, If Asked (9% vs 64% vs 12%) p 0.001 or Physicians Judgement (15%, 5%, 54%) p 0.001. US physicians reported higher comfort rates with managing symptoms at the end of life. In the last 6 months US physicians were more satisfied with provided care Often or Always (63% vs 36% Russian v 21% Indian) p 0.001. Conclusions. US sample was more concerned with patient autonomy and had more comfort and satisfaction in providing end of life care compared to Russian and Indian samples.

The Role of Primary Care Physicians in Providing End-of-Life Care

2018 ◽  
Vol 36 (3) ◽  
pp. 249-254 ◽  
Author(s):  
Jan Tse Liu ◽  
Iris Kovar-Gough ◽  
Nabila Farabi ◽  
Frank Animikwam ◽  
Sarah Beth Weers ◽  
...  
Keyword(s):  
Primary Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Primary Care Physicians ◽  
The United States ◽  
Narrative Review ◽  
Cochrane Library ◽  
Life Care ◽  
Number Of Patients ◽  
Wide Range

Background: Primary care physicians (PCPs) frequently have long-term relationships with patients as well as their families. As such they are well positioned to care for their patients at the end of their lives. As the number of patients in need of end-of-life care continues to grow, it is critical to understand how PCPs can fulfill that need. The purpose of our study is to perform a narrative review of the literature and develop a theoretical model delineating the overarching roles played by PCPs in caring for patients at the end of life. Methods: For this narrative review, the authors searched Medline (PubMed), Embase, Cochrane Library, and Scopus up to March 22, 2017. Articles were not limited by geography. Results: Review of existing literature generally supports 4 broad categories as the primary roles for PCP involvement in end of life: pain and symptom management; information management, including transmitting and clarifying information, setting care priorities, and assisting patients with treatment decisions; coordinating care and collaborating with other providers; and addressing patients’ social, emotional, and spiritual needs. Conclusions: Based on the results of this review, PCPs provide a wide range of services to patients at the end of life. Promoting the provision of the full scope of services by PCPs will help ensure improved continuity of care while providing the highest quality of care for patients, both in the United States and around the world.

Dysphagia in Hospice Care: The Roles of Social Work and Speech-Language Pathologists

2014 ◽  
Vol 23 (4) ◽  
pp. 173-186 ◽  
Author(s):  
Deborah Hinson ◽  
Aaron J. Goldsmith ◽  
Joseph Murray
Keyword(s):  
Social Work ◽  
End Of Life ◽  
Case Studies ◽  
End Of Life Care ◽  
Hospice Care ◽  
Patient Communication ◽  
Life Care ◽  
Speech Language Pathologists ◽  
Four Levels

This article addresses the unique roles of social work and speech-language pathologists (SLPs) in end-of-life and hospice care settings. The four levels of hospice care are explained. Suggested social work and SLP interventions for end-of-life nutrition and approaches to patient communication are offered. Case studies are used to illustrate the specialized roles that social work and SLP have in end-of-life care settings.

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