scholarly journals IMPACT OF DISEASE TRAJECTORY MARKERS ON PROFESSIONAL JUDGMENTS ABOUT ADVANCE CARE PLANNING

2016 ◽  
Vol 56 (Suppl_3) ◽  
pp. 202-202
Author(s):  
Natasha Palipane ◽  
Abi Ponnampalampillai ◽  
Srirupa Gupta

In view of the high morbidity and mortality associated with COVID-19, early and honest conversations with patients about goals of care are vital. Advance care planning in its traditional manner may be difficult to achieve given the unpredictability of the disease trajectory. Despite this, it is crucial that patients' care wishes are explored as this will help prevent inappropriate admissions to hospital and to critical care, improve symptom control and advocate for patient choice. This article provides practical tips on how to translate decisions around treatment escalation plans into conversations, both face-to-face and over the phone, in a sensitive and compassionate manner. Care planning conversations for patients with COVID-19 should be individualised and actively involve the patient. Focusing on goals of care rather than ceilings of treatment can help to alleviate anxiety around these conversations and will remind patients that their care will never cease. Using a framework such as the ‘SPIKES’ mnemonic can help to structure this conversation. Verbally conveying empathy will be key, particularly when wearing personal protective equipment or speaking to relatives over the phone. It is also important to make time to recognise your own emotions during and/or after these conversations.


2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Doris van der Smissen ◽  
Judith A. C. Rietjens ◽  
Lisette van Gemert-Pijnen ◽  
Sandra van Dulmen ◽  
Agnes van der Heide ◽  
...  

Abstract Background Advance care planning (ACP) enables persons to identify preferences for future treatment and care, and to discuss, record and review these preferences. However, the uptake of ACP among patients with chronic diseases is relatively low. Web-based ACP programs can support patients and their relatives in ACP. However, information needs of patients and their relatives for ACP are unknown. The aim of this study is to explore information needs of patients with chronic disease and their relatives for web-based ACP. Methods We conducted semi-structured interviews with patients with chronic diseases and relatives at their home or at the study center. In three cases, the patient and relative were paired since they preferred to be interviewed together. We asked about information they would search for when to start with ACP, where they would search for information, what search terms they would use on the Internet, and what content and information they would consider important on an ACP website. The interviewer asked participants to clarify their responses during the interview. We used thematic analysis to analyze the interviewees’ responses. Results We interviewed nine patients with different chronic diseases including amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), chronic obstructive pulmonary disease (COPD) and kidney diseases, and seven relatives, namely partners or (adult) children. The interviewees were aged 24 to 80 years, nine were female and seven were male. Both patients with a chronic disease and relatives mentioned comparable information needs. Many interviewees indicated they would use the Internet to search for information about ACP. Mentioned search terms were “advance care planning”, “treatment plan”, “disease trajectory” and names of patient associations. Information needs concerned their disease trajectory and quality of life, medical treatment decisions, practical support in arranging care, the concept of ACP and guidance in ACP, communication of treatment and care preferences, peer support of others with chronic diseases, and information for relatives. Many appreciated encouragement of their healthcare providers to take a pro-active role in ACP. Conclusions We conclude that information needs for ACP included guidance in ACP, support in making decisions about medical treatment, and practical support in arranging care. We recommend adapting web-based ACP information to the information needs of patients and their relatives to increase its findability, uptake and usefulness.


2017 ◽  
Vol 59 (2) ◽  
pp. 338-346 ◽  
Author(s):  
Kristin R Baughman ◽  
Ruth Ludwick ◽  
David Jarjoura ◽  
Denise Kropp ◽  
Vimal Shenoy

2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Leonard L. Sokol ◽  
Michael J. Young ◽  
Jack Paparian ◽  
Benzi M. Kluger ◽  
Hillary D. Lum ◽  
...  

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.


Author(s):  
Molly T. Williams ◽  
Mohana Karlekar ◽  
Anne Coogan ◽  
Megan Shifrin ◽  
Judy Ascenzi

Introduction: Advance care planning (ACP) is a fluid discussion between patients and providers to define preferences for future medical care. In the acute care setting, ACP is limited due to lack of structured process for identifying persons who may benefit from ACP. This quality improvement (QI) project aimed to increase the frequency of ACP discussions and documentation of preferences by targeting geriatric patients with an episodic disease trajectory for ACP. Methods: This project used an intervention and comparison group design to target English-speaking, geriatric adults at a large academic medical center with a diagnosis of NYHA class III/IV HF and/or GOLD criteria III/IV COPD for ACP discussions. The intervention group was compared to a group with a range of diagnoses who were approached in a non-systematic way. Results: Thirteen (n = 13) participants completed all aspects of the QI project. Results showed a non-significant increase in the number of patients with a diagnosis of HF and/or COPD who participated in an ACP discussion when compared to the comparison group (n = 20, p = 0.131), as well as a non-significant increase in the number of ACP tools documented in the HER (53.8% compared to 30%) (x = 1.877, p = 0.171). Conclusion: While this project demonstrated non-significant statistical results in the incidence and documentation of an ACP tool, this project increased the number of ACP discussions had, which is clinically significant.


2012 ◽  
Vol 43 (1) ◽  
pp. 10-19 ◽  
Author(s):  
Kristin R. Baughman ◽  
Ruth E. Ludwick ◽  
David M. Merolla ◽  
Barbara R. Palmisano ◽  
Susan Hazelett ◽  
...  

2021 ◽  
pp. ASN.2020091298
Author(s):  
Keren Ladin ◽  
Isabel Neckermann ◽  
Noah D’Arcangelo ◽  
Susan Koch-Weser ◽  
John B. Wong ◽  
...  

BackgroundOlder patients with advanced CKD are at high risk for serious complications and death, yet few discuss advance care planning (ACP) with their kidney clinicians. Examining barriers and facilitators to ACP among such patients might help identify patient-centered opportunities for improvement.MethodsIn semistructured interviews in March through August 2019 with purposively sampled patients (aged ≥70 years, CKD stages 4–5, nondialysis), care partners, and clinicians at clinics in across the United States, participants described discussions, factors contributing to ACP completion or avoidance, and perceived value of ACP. We used thematic analysis to analyze data.ResultsWe conducted 68 semistructured interviews with 23 patients, 29 care partners, and 26 clinicians. Only seven of 26 (27%) clinicians routinely discussed ACP. About half of the patients had documented ACP, mostly outside the health care system. We found divergent ACP definitions and perspectives; kidney clinicians largely defined ACP as completion of formal documentation, whereas patients viewed it more holistically, wanting discussions about goals, prognosis, and disease trajectory. Clinicians avoided ACP with patients from minority groups, perceiving cultural or religious barriers. Four themes and subthemes informing variation in decisions to discuss ACP and approaches emerged: (1) role ambiguity and responsibility for ACP, (2) questioning the value of ACP, (3) confronting institutional barriers (time, training, reimbursement, and the electronic medical record, EMR), and (4) consequences of avoiding ACP (disparities in ACP access and overconfidence that patients’ wishes are known).ConclusionsPatients, care partners, and clinicians hold discordant views about the responsibility for discussing ACP and the scope for it. This presents critical barriers to the process, leaving ACP insufficiently discussed with older adults with advanced CKD.


2017 ◽  
Vol 1 (suppl_1) ◽  
pp. 655-655
Author(s):  
K. Baughman ◽  
R. Ludwick ◽  
D. Jarjoura ◽  
D. Kropp

2018 ◽  
Vol 75 (2) ◽  
pp. 105-111 ◽  
Author(s):  
Ralf J. Jox ◽  
Francesca Bosisio ◽  
Eve Rubli Truchard

Zusammenfassung. Die Palliative Care muss sich im Zuge des demographischen Wandels vieler Gesellschaften rund um den Globus tiefgreifend wandeln. Sie muss mehr und mehr mit der Geriatrie zusammenarbeiten und geriatrische Expertise integrieren. Eine der zentralen Herausforderungen Geriatrischer Palliative Care ist die ethisch angemessene Therapieentscheidung für Menschen, die nicht mehr urteilsfähig sind. Nachdem der bisherige Ansatz herkömmlicher Patientenverfügungen erwiesenermassen enttäuscht hat, wird aktuell, gerade auch in deutschsprachigen Ländern, das systemische Konzept des Advance Care Planning (ACP) verfolgt. In diesem Artikel wird zunächst ACP mit seinen Zielen, Elementen und Effekten vorgestellt. Sodann wird gezeigt, weshalb es für Menschen mit Demenz eines adaptierten ACP-Programms bedarf und was ein solches demenzspezifisches ACP beinhalten muss.


Praxis ◽  
2017 ◽  
Vol 106 (25) ◽  
pp. 1369-1375 ◽  
Author(s):  
Barbara Loupatatzis ◽  
Tanja Krones

Zusammenfassung. Advance Care Planning ist ein begleiteter, strukturierter Prozess, der es Patienten und ihren Angehörigen ermöglicht, sich mit ihren Einstellungen zu Leben und Sterben sowie möglichen Behandlungen für den Fall einer Urteilsunfähigkeit mit Hilfe eines ausgebildeten Beraters auseinander zu setzen. Das Konzept kombiniert die individuelle Beratung des Patienten mit einem regionalen, systemischen Ansatz, der sicherstellt, dass alle Beteiligten die verwendeten Dokumente kennen und auch in einer Notfallsituation korrekt anwenden können. Ziel ist es, die Behandlung von urteilsunfähigen Patienten besser im Sinne ihrer Wünsche und Bedürfnisse zu koordinieren und dadurch die Patientenautonomie zu stärken.


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