scholarly journals 46 Promoting Advance Care Planning of Patients with Parkinsonism in the Community

2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i12-i42
Author(s):  
C Khuang Lim ◽  
C Miller ◽  
T Jones
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Advanced Care Planning ◽  
Do Not Resuscitate ◽  
Community Based ◽  
Care Plans ◽  
Advance Care

Abstract Introduction NICE guideline recommends that all patients with Parkinson’s disease should be reviewed every 6–12 months and offered opportunities to discuss Advanced Care Planning (ACP) (1, 2). There is evidence demonstrating that Advanced Care Plans results in shorter length of stay in the last year of life and lower hospital costs (2, 3). A local baseline audit showed that Advanced Care Planning was not performed adequately. Methods A local baseline audit on community care home patients with Parkinsonism was completed in February 2018. A community-based Parkinson’s clinic was commenced in June 2018. Patients with parkinsonism who were unable to attend hospital clinics due to underlying frailty, neuropsychiatry and physical issues, were reviewed. At each visit, advice was provided on medicines management and there were discussions around Advance Care Planning. A re-audit was completed in August 2019. Patient’s Electronic Patient Records were scrutinised to evaluate progress and identify those who had died. Data was analysed using Microsoft Excel. Results The initiative contributed directly to end of life care in 7/17 patients. Parkinson’s disease medications were rationalised in 11/17 (64.70%). 14/17 (82.35%) had a community-based Do Not Resuscitate order completed. Conclusions The community Parkinson’s clinic service promoted Advance Care Planning in patients with Parkinsonism. This service provides specialist input in frail older people with Parkinsonism who were unable to attend hospital clinic, promoting end of life choices around where they wished to die and avoiding unnecessary hospitalisation in the final stages of their life.

Understanding how people with Parkinson’s disease and their relatives approach advance care planning

2021 ◽  
Author(s):  
Deepta Churm ◽  
Claire Dickinson ◽  
Louise Robinson ◽  
Paul Paes ◽  
Thomas Cronin ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Advance Care Planning ◽  
Care Planning ◽  
Advance Care

How Do Patients With Parkinson’s Disease Approach Advance Care Planning? A UK-Based Mixed Methods Study

2021 ◽  
pp. 089198872098891
Author(s):  
Deepta Churm ◽  
Claire Dickinson ◽  
Louise Robinson ◽  
Paul Paes ◽  
Thomas Cronin ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Mixed Methods ◽  
Advance Care Planning ◽  
Mixed Methods Study ◽  
Care Planning ◽  
Structured Interviews ◽  
The Future ◽  
Explanatory Mixed Methods ◽  
Advance Care

Background: Advance Care Planning (ACP) allows people the opportunity to plan for a time when they may lose capacity. The aim of this study was to determine the extent people with Parkinson’s disease (PD) were aware of ACP, existing plans they held and to explore their own views, as well as their relatives, on planning for the future. Methods: This was a sequential explanatory mixed methods study with a postal quantitative survey to establish awareness and engagement with planning for the future; and qualitative semi-structured interviews to explore the views of people with PD and their relatives on ACP and future plans. Results: 104 questionnaires were analyzed. 76% of respondents had not heard of ACP, while 69% expressed an interest in finding out more about ACP. 78% had a will, and 23% had appointed lasting power of attorneys. All interviewees acknowledged engaging in some aspect of planning. Plans were mostly practical as opposed to health-care related. Interviewees expressed a preference for ACP to be carried out by their PD team, at home, and at a time relevant to their condition. Conclusion: The awareness and understanding of ACP in people with PD is low. While there is desire to be better informed about ACP, this did not translate into desire to engage in ACP. Health professionals should identify people for whom ACP may serve a positive purpose, and proactively address ACP as a continuum with them, while ensuring awareness is raised about ACP, and there is access for who are interested.

Different Associations Between Inpatient or Outpatient Palliative Care and End-of-Life Outcomes for Hospitalized Patients With Cancer

2021 ◽  
Author(s):  
Jonathan C. Yeh ◽  
Arielle R. Urman ◽  
Robert J. Besaw ◽  
Laura E. Dodge ◽  
Kathleen A. Lee ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Advance Care Planning ◽  
Hospital Length ◽  
Hospitalized Patients ◽  
Hospital Length Of Stay ◽  
Care Planning ◽  
Do Not Resuscitate ◽  
Patients With Cancer ◽  
Advance Care

PURPOSE Palliative care (PC) improves outcomes in advanced cancer, and guidelines recommend early outpatient referral. However, many PC teams see more inpatient than outpatient consults. We conducted a retrospective study of hospitalized patients with cancer to quantify exposure to inpatient and outpatient PC and describe associations between PC and end-of-life (EOL) quality measures. METHODS We identified all decedents admitted to an inpatient oncology unit in 1 year (October 1, 2017-September 30, 2018) and abstracted hospitalization statistics, inpatient and outpatient PC visits, and EOL outcomes. Descriptive statistics, univariate tests, and multivariate analysis evaluated associations between PC and patient outcomes. RESULTS In total, 522 decedents were identified. 50% saw PC; only 21% had an outpatient PC visit. Decedents seen by PC were more likely to enroll in hospice (78% v 44%; P < .001), have do-not-resuscitate status (87% v 55%; P < .001), have advance care planning documents (53% v 31%; P < .001), and die at home or inpatient hospice instead of in hospital (67% v 40%; P < .01). Decedents seen by PC had longer hospital length-of-stay (LOS; 8.4 v 7.0 days; P = .03), but this association reversed for decedents seen by outpatient PC (6.3 v 8.3 days; P < .001), who also had longer hospice LOS (46.5 v 27.1 days; P < .01) and less EOL intensive care (6% v 15%; P < .05). CONCLUSION PC was associated with significantly more hospice utilization and advance care planning. Patients seen specifically by outpatient PC had shorter hospital LOS and longer hospice LOS. These findings suggest different effects of inpatient and outpatient PC, underscoring the importance of robust outpatient PC.

Advance Care Planning for Mechanical Ventilation: A Qualitative Study on Health-Care Providers’ Approaches to Cross-Cultural Care

2017 ◽  
Vol 80 (2) ◽  
pp. 305-330 ◽  
Author(s):  
Ayah Nayfeh ◽  
Isabelle Marcoux ◽  
Jeffrey Jutai
Keyword(s):  
Health Care ◽  
Mechanical Ventilation ◽  
End Of Life ◽  
Health Care Providers ◽  
Advance Care Planning ◽  
Care Planning ◽  
Care Providers ◽  
Care Plans ◽  
Beliefs And Values ◽  
Advance Care

Advance care planning (ACP) is a method used for patients to express in advance their preferences for life-sustaining treatments at the end of life. With growing ethnocultural diversity in Canada, health-care providers are managing an increasing number of diverse beliefs and values that are commonly associated with preferences for intensive mechanical ventilation (MV) treatment at the end of life. This study aimed to identify and describe the approaches used by health-care providers to set advance care plans for MV with seriously ill patients from diverse ethnocultural backgrounds. Semistructured interviews were conducted with health-care providers from acute-care settings. Using a value-based approach in ACP was deemed an effective method of practice for managing and interpreting diverse beliefs and values that impact decisions for MV. However, personnel, organizational, and systemic barriers that exist continue to hinder the provision of ACP across cultures.

scholarly journals Advance care planning in Parkinson’s disease: ethical challenges and future directions

2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Leonard L. Sokol ◽  
Michael J. Young ◽  
Jack Paparian ◽  
Benzi M. Kluger ◽  
Hillary D. Lum ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Advance Care Planning ◽  
Care Planning ◽  
Ethical Challenges ◽  
Future Directions ◽  
Disease Trajectory ◽  
Advance Care

AbstractRecent discoveries support the principle that palliative care may improve the quality of life of patients with Parkinson’s disease and those who care for them. Advance care planning, a component of palliative care, provides a vehicle through which patients, families, and clinicians can collaborate to identify values, goals, and preferences early, as well as throughout the disease trajectory, to facilitate care concordant with patient wishes. While research on this topic is abundant in other life-limiting disorders, particularly in oncology, there is a paucity of data in Parkinson’s disease and related neurological disorders. We review and critically evaluate current practices on advance care planning through the analyses of three bioethical challenges pertinent to Parkinson’s disease and propose recommendations for each.

Ki döntsön az élet végén? Az ellátás előzetes tervezésének nemzetközi gyakorlata és hazai lehetőségei

2018 ◽  
Vol 159 (4) ◽  
pp. 131-140
Author(s):  
Csilla Busa ◽  
Judit Zeller ◽  
Ágnes Csikós
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Individual Values ◽  
Negative Attitudes ◽  
Care Plans ◽  
Future Care ◽  
Advance Care ◽  
Independent Decision ◽  
The Right

Abstract: At the advanced stage of serious illness, end-of-life decisions need to be made. Advance care planning offers patients the right to decide on their own future care when independent decision-making is no longer possible. The most complex and effective advance care plans include patients’ preferred or refused medical treatments, care-related wishes, and individual values as well. Advance care planning can improve end-of-life care and contribute to higher satisfaction. It can also reduce distress in relatives and the costs of care. Patients’ preferences provide a guidance for professional care. A number of studies have identified the benefits of advance care planning, and it has been included in guidelines. Potential barriers to advance care planning could be as follows: taboo of talking about dying, negative attitudes of patients and relatives, poor knowledge of professional caregivers, lack of necessary circumstances to have the conversation. Advance care planning is almost unknown in Hungary, although it is possible to refuse certain types of treatments. Cooperation of professionals, development of gradual and postgraduate trainings, and improvement of social awareness are also needed so that advance care planning can be adapted in Hungary. Orv Hetil. 2018; 159(4): 131–140.

Advance care planning: the who, what, when, where and why

2020 ◽  
Vol 81 (2) ◽  
pp. 1-6
Author(s):  
Anna J Steel ◽  
Lucy H Owen
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Medical Workforce ◽  
Care Plans ◽  
Future Care ◽  
Advance Care ◽  
Preferences For Care

Advance care planning is an opportunity for patients to express their priorities for future care. NHS England has outlined a commitment to end-of-life care, advocating a shift towards more patient-centred care. The NHS is encouraging the workforce to engage patients in conversations about what is important to them, shifting the focus from ‘what is wrong with you’ to ‘what matters to you’. Traditionally, this was seen as the doctor's role but this conversation can and should happen with the wider skilled medical workforce. The key to advance care planning is to have these conversations early on when patients have the capacity to discuss their preferences for care. Advance care planning can occur in any setting where the patient is comfortable to have the conversation, be that at home, in the GP surgery, in hospital or another setting. Patients with advance care plans are more likely to have their wishes respected, have fewer unwanted interventions, experience reduced transitions between care settings and are more likely to die in their preferred place of death. Healthcare professionals have a duty to offer advance care planning to patients nearing the last phase of life so that care can be delivered to honour individual needs at the end of life.

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