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1.
Support Care Cancer ; 32(5): 324, 2024 May 03.
Article in English | MEDLINE | ID: mdl-38700723

ABSTRACT

PURPOSE: To identify elements of timely integration of palliative care (PC) into hospital oncology care from best practices. Thereafter, to assess the level of consensus among oncology and PC specialists and patient and relative representatives on the characteristics of timely integration of PC. METHODS: A three-round modified Delphi study was conducted. The expert panel consisted of 83 healthcare professionals (HCPs) from 21 Dutch hospitals (43 physicians, 40 nurses), 6 patient and 2 relative representatives. In the first round, four elements of integrated PC were considered: (1) identification of potential PC needs, (2) advance care planning (ACP), (3) routine symptom monitoring and (4) involvement of the specialist palliative care team (SPCT). In subsequent rounds, the panellists assessed which characteristics were triggers for initiating an element. A priori consensus was set at ≥ 70%. RESULTS: A total of 71 (78%) panellists completed the first questionnaire, 65 (71%) the second and 49 (54%) the third. Panellists agreed that all patients with incurable cancer should have their PC needs assessed (97%), symptoms monitored (91%) and ACP initiated (86%). The SPCT should be involved at the patient's request (86%) or when patients suffer from increased symptom burden on multiple dimensions (76%). Patients with a life expectancy of less than 3 months should be offered a consultation (71%). CONCLUSION: The expert panel agreed that timely integration of PC into oncology is important for all patients with incurable cancer, using early identification, ACP and routine symptom monitoring. Involvement of the SPCT is particularly needed in patients with multidimensional symptom burden and in those nearing death.


Subject(s)
Delphi Technique , Neoplasms , Palliative Care , Humans , Palliative Care/methods , Palliative Care/organization & administration , Neoplasms/therapy , Male , Netherlands , Female , Middle Aged , Surveys and Questionnaires , Advance Care Planning/organization & administration , Adult , Delivery of Health Care, Integrated/organization & administration , Delivery of Health Care, Integrated/methods , Consensus , Time Factors , Patient Care Team/organization & administration
2.
J Am Board Fam Med ; 37(2): 215-227, 2024.
Article in English | MEDLINE | ID: mdl-38740474

ABSTRACT

PURPOSE: Although interventions can increase advance care planning (ACP) engagement, it remains unclear which interventions to choose in primary care settings. This study compares a passive intervention (mailed materials) to an interactive intervention (group visits) on participant ACP engagement and experiences. METHODS: We used mixed methods to examine ACP engagement at baseline and six months following two ACP interventions. Eligible patients were randomized to receive mailed materials or participate in two ACP group visits. We administered the 4-item ACP Engagement survey (n = 110) and conducted interviews (n = 23). We compared mean scores and percent change in ACP engagement, analyzed interviews with directed content analysis to understand participants' ACP experiences, and integrated the findings based on mailed materials or group visits intervention. RESULTS: All participants demonstrated increased ACP engagement scores. At six months, group visit participants reported higher percent change in mean overall score compared with mailed materials participants (+8% vs +3%, P < .0001). Group visits participants reported that being prompted to think about end-of-life preferences, gaining knowledge about ACP, and understanding the value of completing ACP documentation influenced their ACP readiness. While both interventions encouraged patients to start considering and refining their end-of-life preferences, group visits made patients feel more knowledgeable about ACP, highlighted the importance of completing ACP documentation early, and sparked further ACP discussions with others. CONCLUSIONS: While primary care patients may benefit from mailed ACP materials, patients reported increased readiness after ACP group visits. Group visits emphasized the value of upstream preparation, ongoing conversations, and increased knowledge about ACP.


Subject(s)
Advance Care Planning , Primary Health Care , Humans , Advance Care Planning/organization & administration , Male , Female , Aged , Middle Aged , Primary Health Care/organization & administration , Patient Participation , Surveys and Questionnaires
3.
Rev Med Suisse ; 20(873): 925-929, 2024 05 08.
Article in French | MEDLINE | ID: mdl-38716999

ABSTRACT

The care of a nursing home resident suffering from dementia and aspiration pneumonia (AP) is generally initiated by the family doctor (FD) in collaboration with the nursing home professionals. This is a holistic emergency medicine whose occurrence should be the subject of advance care planning, an AP being rarely isolated, and its risk factors are known. AP - the probable cause of half of deaths of demented individuals in nursing homes - requires essentially non-hospital care. It calls on the scientific, relational, collaborative, and ethical skills of the family doctor. This review aims to contextualize the emergency management skills of the FD in the living environment of the nursing home. The management of uncertainty linked to a probabilistic diagnosis is highlighted and care commensurate with life expectancy is provided.


La prise en soins d'un résident d'un établissement médicosocial (EMS) souffrant de démence et de pneumonie d'aspiration (PA) est en général initiée par le médecin de famille (MF) en collaboration avec les professionnels du lieu de vie de la personne. Il s'agit d'une médecine d'urgence holistique qui devrait faire l'objet d'un plan de soins anticipés, la PA étant rarement isolée et ses facteurs de risque étant connus. La PA est la cause probable de la moitié des décès de personnes démentes en EMS. Elle ne devrait en principe pas nécessiter d'hospitalisation. La PA fait appel à des compétences scientifiques, relationnelles, collaboratives et éthiques du MF. Dans cet article de revue, nous contextualisons les compétences de gestion de l'urgence du MF dans un EMS. Nous discutons également de la gestion de l'incertitude en lien avec un diagnostic probabiliste et proposons des soins en adéquation avec l'espérance de vie.


Subject(s)
Dementia , Nursing Homes , Pneumonia, Aspiration , Humans , Nursing Homes/organization & administration , Pneumonia, Aspiration/etiology , Pneumonia, Aspiration/diagnosis , Dementia/diagnosis , Dementia/epidemiology , Risk Factors , Advance Care Planning/organization & administration , Aged , Homes for the Aged
4.
Lancet Healthy Longev ; 5(5): e370-e378, 2024 May.
Article in English | MEDLINE | ID: mdl-38608695

ABSTRACT

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.


Subject(s)
Advance Care Planning , Consensus , Delphi Technique , Dementia , Palliative Care , Humans , Advance Care Planning/organization & administration , Advance Directives , Dementia/therapy , Europe , Health Policy
5.
Surgery ; 171(2): 459-466, 2022 02.
Article in English | MEDLINE | ID: mdl-34563351

ABSTRACT

BACKGROUND: The timing and the dose of Advanced Care Planning in patients with pancreatic ductal adenocarcinoma undergoing curative-intent resection are generally dictated by the surgeon performing the operation. METHODS: A qualitative investigation using 1:1 interviews with 40 open-ended questions was conducted with a convenience sample of 10 high-volume pancreatic surgeons from across the country. The grounded theory approach was used for data analysis. RESULTS: A total of 10 interviews were conducted with expert pancreatic surgeons-6 males and 4 females. During preoperative counseling, all surgeons attempt to motivate patients by emphasizing hope, optimism, and the fact that surgery offers the only opportunity for cure. All surgeons discuss the possibility of recurrence as well as postoperative complications; however, a majority perceived that patients do not fully appreciate the likelihood of recurrence or postoperative complications. All surgeons acknowledged the importance of end-of-life conversations when death is imminent. Seventy percent of surgeons had mixed opinions regarding benefits of preoperative Advanced Care Planning in the preoperative setting, while 20% felt it was definitely beneficial, particularly that delivery of care aligned with patient goals. All surgeons emphasized that Advanced Care Planning should be led by a physician who both knows the patient well and understands the nuances of pancreatic ductal adenocarcinoma management. Most common barriers to in-depth Advanced Care Planning discussion reported by surgeons include taking away hope, lack of time, and concern for sending "mixed messages." CONCLUSION: We identified that surgeons experience a fundamental tension between promoting realistic long-term goals and expectations versus focusing on hope and enabling an overly optimistic perception of prognosis.


Subject(s)
Advance Care Planning/organization & administration , Carcinoma, Pancreatic Ductal/surgery , Neoplasm Recurrence, Local/epidemiology , Pancreatectomy/adverse effects , Pancreatic Neoplasms/surgery , Postoperative Complications/epidemiology , Carcinoma, Pancreatic Ductal/mortality , Carcinoma, Pancreatic Ductal/psychology , Counseling/organization & administration , Female , Grounded Theory , Hope , Humans , Male , Neoplasm Recurrence, Local/etiology , Neoplasm Recurrence, Local/psychology , Pancreatectomy/psychology , Pancreatic Neoplasms/mortality , Pancreatic Neoplasms/psychology , Physician-Patient Relations , Postoperative Complications/etiology , Postoperative Complications/prevention & control , Postoperative Complications/psychology , Prognosis , Qualitative Research , Surgeons/psychology , Time Factors
7.
Ann Intern Med ; 174(11): 1519-1527, 2021 11.
Article in English | MEDLINE | ID: mdl-34461035

ABSTRACT

BACKGROUND: Interventions with the potential for broad reach in ambulatory settings are necessary to achieve a life course approach to advance care planning. OBJECTIVE: To examine the effect of a computer-tailored, behavioral health model-based intervention on the engagement of adults in advance care planning recruited from ambulatory care settings. DESIGN: Cluster randomized controlled trial with participant-level analysis. (ClinicalTrials.gov: NCT03137459). SETTING: 10 pairs of primary and selected specialty care practices matched on patient sociodemographic information. PARTICIPANTS: English-speaking adults aged 55 years or older; 454 adults at practices randomly assigned to usual care and 455 at practices randomly assigned to intervention. INTERVENTION: Brief telephone or web-based assessment generating a mailed, individually tailored feedback report with a stage-matched brochure at baseline, 2 months, and 4 months. MEASUREMENTS: The primary outcome was completion of the following 4 advance care planning activities at 6 months: identifying and communicating with a trusted person about views on quality versus quantity of life, assignment of a health care agent, completion of a living will, and ensuring that the documents are in the medical record-assessed by a blinded interviewer. Secondary outcomes were completion of individual advance care planning activities. RESULTS: Participants were 64% women and 76% White. The mean age was 68.3 years (SD, 8.3). The predicted probability of completing all advance care planning activities in usual care sites was 8.2% (95% CI, 4.9% to 11.4%) versus 14.1% (CI, 11.0% to 17.2%) in intervention sites (adjusted risk difference, 5.2 percentage points [CI, 1.6 to 8.8 percentage points]). Prespecified subgroup analysis found no statistically significant interactions between the intervention and age, education, or race. LIMITATIONS: The study was done in a single region and excluded non-English speaking participants. No information was collected about nonparticipants. CONCLUSION: A brief, easily delivered, tailored print intervention increased participation in advance care planning in ambulatory care settings. PRIMARY FUNDING SOURCE: National Institute of Nursing Research and National Institute of Aging.


Subject(s)
Advance Care Planning/organization & administration , Ambulatory Care , Aged , Feedback , Female , Humans , Male , Middle Aged , Pamphlets , Single-Blind Method
8.
Medicine (Baltimore) ; 100(32): e26856, 2021 Aug 13.
Article in English | MEDLINE | ID: mdl-34397894

ABSTRACT

ABSTRACT: Rapid response systems (RRS) have been introduced worldwide to reduce unpredicted in-hospital cardiac arrest (IHCA) and in-hospital mortality. The role of advance care planning (ACP) in the management of critical patients has not yet been fully determined in Japan.We retrospectively assessed the characteristics of all inpatients with unpredicted IHCA in our hospital between 2016 and 2018. Yearly changes in the number of RRS activations and the incidence of unpredicted IHCA with or without code status discussion were evaluated from 2014 to 2018. Hospital standardized mortality ratios were assessed from the data reported in the annual reports by the National Hospital Organization.A total of 81 patients (age: 70.9 ±â€Š13.3 years) suffered an unpredicted IHCA and had multiple background diseases, including heart disease (75.3%), chronic kidney disease (25.9%), and postoperative status (cardiovascular surgery, 18.5%). Most of the patients manifested non-shockable rhythms (69.1%); survival to hospital discharge rate was markedly lower than that with shockable rhythms (26.8% vs 72.0%, P < .001). The hospital standardized mortality ratios was maintained nearly constant at approximately 50.0% for 3 consecutive years. The number of cases of RRS activation markedly increased from 75 in 2014 to 274 patients in 2018; conversely, the number of unpredicted IHCA cases was reduced from 40 in 2014 to 18 in 2018 (P < .001). Considering the data obtained in 2014 and 2015 as references, the RRS led to a reduction in the relative risk of unpredicted IHCA from 2016 to 2018 (ie, 0.618, 95% confidence interval 0.453-0.843). The reduction in unpredicted IHCA was attributed partly to the increased number of patients who had discussed the code status, and a significant correlation was observed between these parameters (R2 = 0.992, P < .001). The reduction in the number of patients with end-stage disease, including congestive heart failure and chronic renal failure, paralleled the incidence of unpredicted IHCA.Both RRS and ACP reduced the incidence of unpredicted IHCA; RRS prevents progression to unpredicted IHCA, whereas ACP decreases the number of patients with no code status discussion and thus potentially reducing the patient subgroup progressing to an unpredicted IHCA.


Subject(s)
Cardiopulmonary Resuscitation , Critical Illness , Heart Arrest , Hospital Rapid Response Team , Hospitals, Urban , Advance Care Planning/organization & administration , Aged , Cardiopulmonary Resuscitation/methods , Cardiopulmonary Resuscitation/standards , Critical Illness/mortality , Critical Illness/therapy , Female , Heart Arrest/diagnosis , Heart Arrest/etiology , Heart Arrest/mortality , Hospital Mortality , Hospital Rapid Response Team/organization & administration , Hospital Rapid Response Team/standards , Hospitals, Urban/organization & administration , Hospitals, Urban/standards , Humans , Incidence , Japan/epidemiology , Male , Needs Assessment , Prognosis , Risk Assessment
10.
J Am Heart Assoc ; 10(15): e020949, 2021 08 03.
Article in English | MEDLINE | ID: mdl-34308687

ABSTRACT

Background Patients with left ventricular assist devices (LVADs) implanted as destination therapy may receive suboptimal preparation for and care at the end of life, but there is limited understanding of the reasons for these shortcomings. Exploring perceptions of individuals (caregivers and clinicians) who are closely involved in the end-of-life experience with patients with destination therapy LVADs can help identify key opportunities for improving care. Methods and Results We conducted semistructured qualitative interviews with 7 bereaved caregivers of patients with destination therapy LVADs and 10 interdisciplinary LVAD clinicians. Interviews explored perceptions of preparing for end of life, communicating about end of life, and providing and receiving end-of-life care, and were analyzed using a 2-step team-based inductive approach to coding and analysis. Six themes pertaining to end-of-life experiences were derived: (1) timing end-of-life discussions in the setting of unpredictable illness trajectories, (2) prioritizing end-of-life preparation and decision-making, (3) communicating uncertainty while providing support and hope, (4) lack of consensus on responsibility for end-of-life discussions, (5) perception of the LVAD team as invincible, and (6) divergent perceptions of LVAD withdrawal. Conclusions This study revealed 6 unique aspects of end-of-life care for patients with destination therapy LVADs as reported by clinicians and caregivers. Themes coalesced around communication, team-based care, and challenges unique to patients with LVADs at end of life. Programmatic changes may address some aspects, including training clinicians in LVAD-specific communication skills. Other aspects, such as standardizing the role of the palliative care team and developing practical interventions that enable timely advance care planning during LVAD care, will require multifaceted interventions.


Subject(s)
Caregivers/psychology , Heart Failure , Heart-Assist Devices , Quality of Life , Social Perception , Terminal Care , Advance Care Planning/organization & administration , Attitude of Health Personnel , Female , Health Services Needs and Demand , Heart Failure/epidemiology , Heart Failure/psychology , Heart Failure/therapy , Heart-Assist Devices/ethics , Heart-Assist Devices/psychology , Hospice Care/ethics , Hospice Care/psychology , Hospice Care/standards , Humans , Male , Middle Aged , Palliative Care/methods , Palliative Care/standards , Patient Care Team/standards , Qualitative Research , Quality Improvement , Terminal Care/ethics , Terminal Care/psychology , Terminal Care/standards , United States , Withholding Treatment/ethics
11.
J Community Health Nurs ; 38(3): 179-192, 2021.
Article in English | MEDLINE | ID: mdl-34148432

ABSTRACT

This study aimed to develop a locally suitable advance care planning (ACP) program for older community-dwelling adults and a training program for nurse facilitators in Korea, and to evaluate their feasibility from the facilitators' experiences. This was a mixed methods pilot study that assessed the feasibility of an ACP program by analyzing survey, checklist, and focus group interview data. The ACP program was named CLOSE (Communicating and Listening to Our Seniors' voices about End-of-life care). Home health care nurses (N = 9) participated in this study. The participants reported that CLOSE was applicable to older community-dwelling adults and the training program was useful for increasing facilitator competency. We suggest some lessons from this pilot study that can be used to improve the ACP program and encourage community health nurses to participate in ACP as facilitators.


Subject(s)
Advance Care Planning/organization & administration , Advanced Practice Nursing/education , Advance Care Planning/trends , Advanced Practice Nursing/methods , Aged , Feasibility Studies , Female , Focus Groups/methods , Humans , Independent Living/psychology , Independent Living/standards , Korea/ethnology , Middle Aged , Pilot Projects , Program Evaluation/methods , Qualitative Research , Surveys and Questionnaires
12.
J Am Geriatr Soc ; 69(8): 2132-2142, 2021 08.
Article in English | MEDLINE | ID: mdl-33971029

ABSTRACT

BACKGROUND/OBJECTIVES: Quantitative studies have documented persistent regional, facility, and racial differences in the intensity of care provided to nursing home (NH) residents with advanced dementia including, greater intensity in the Southeastern United States, among black residents, and wide variation among NHs in the same hospital referral region (HRR). The reasons for these differences are poorly understood, and the appropriate way to study them is poorly described. DESIGN: Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life (ADVANCE) is a large qualitative study to elucidate factors related to NH organizational culture and proxy perspectives contributing to differences in the intensity of advanced dementia care. Using nationwide 2016-2017 Minimum DataSet information, four HRRs were identified in which the relative intensity of advanced dementia care was high (N = 2 HRRs) and low (N = 2 HRRs) based on hospital transfer and tube-feeding rates among residents with this condition. Within those HRRs, we identified facilities providing high (N = 2 NHs) and low (N = 2 NHs) intensity care relative to all NHs in that HRR (N = 16 total facilities; 4 facilities/HRR). RESULTS/CONCLUSIONS: To date, the research team conducted 275 h of observation in 13 NHs and interviewed 158 NH providers from varied disciplines to assess physical environment, care processes, decision-making processes, and values. We interviewed 44 proxies (black, N = 19; white, N = 25) about their perceptions of advance care planning, decision-making, values, communication, support, trust, literacy, beliefs about death, and spirituality. This report describes ADVANCE study design and the facilitators and challenges of its implementation, providing a template for the successful application of large qualitative studies focused on quality care in NHs.


Subject(s)
Advance Care Planning/organization & administration , Alzheimer Disease/therapy , Homes for the Aged/standards , Nursing Homes/standards , Aged , Databases, Factual , Decision Making , Female , Homes for the Aged/statistics & numerical data , Humans , Male , Nursing Homes/statistics & numerical data , Organizational Culture , Proxy , Qualitative Research
13.
Curr Opin Support Palliat Care ; 15(2): 147-153, 2021 06 01.
Article in English | MEDLINE | ID: mdl-33843761

ABSTRACT

PURPOSE OF REVIEW: COVID-19 has permeated the very essence of human existence and society and disrupted healthcare systems. The attrition stemming from this highly contagious disease particularly affects those rendered vulnerable by age and infirmity, including those with underlying cardiovascular disease. This article critically reviews how best to integrate supportive care into the management of those affected. RECENT FINDINGS: Numerous studies have described the pathophysiology of COVID-19, including that specifically arising in those with cardiovascular disease. Potential treatment strategies have emerged but there is limited guidance on the provision of palliative care. A framework for implementation of this service needs to be developed, perhaps involving the training of non-specialists to deliver primary palliative care in the community, bolstered by the use of telemedicine. The appropriate use of limited clinical resources has engendered many challenging discussions and complex ethical decisions. Prospective implementation of future policies requires the incorporation of measures to assuage moral distress, burnout and compassion fatigue in healthcare staff who are psychologically and physically exhausted. SUMMARY: Further research based on patient-centred decision making and advance care planning is required to ensure the supportive needs of COVID-19 patients with cardiovascular disease are adequately met. This research should focus on interventions applicable to daily healthcare practice and include strategies to safeguard staff well-being.


Subject(s)
COVID-19/epidemiology , Cardiovascular Diseases/epidemiology , Communication , Palliative Care/organization & administration , Advance Care Planning/organization & administration , Burnout, Professional/prevention & control , Burnout, Professional/psychology , Compassion Fatigue/prevention & control , Compassion Fatigue/psychology , Cultural Competency , Decision Making , Humans , Pandemics , Patient Participation/methods , Patient Participation/psychology , SARS-CoV-2 , Telemedicine/organization & administration
14.
JAMA Netw Open ; 4(4): e213053, 2021 04 01.
Article in English | MEDLINE | ID: mdl-33822069

ABSTRACT

Importance: There is widespread consensus on the challenges to meeting the end-of-life wishes of decedents in the US. However, there is broad but not always recognized success in meeting wishes among decedents 65 years and older. Objective: To assess how well end-of-life wishes of decedents 65 years and older are met in the last year of life. Design, Setting, and Participants: This quality improvement study involved 3 planned samples of family members or informants identified as the primary contact in the medical record of Kaiser Permanente Southern California decedents. The first sample was 715 decedents, 65 years or older, who died between April 1 and May 31, 2017. The second was a high-cost sample of 332 decedents, 65 years or older, who died between June 1, 2016, and May 31, 2017, and whose costs in the last year of life were in the top 10% of the costs of all decedents. The third was a lower-cost sample with 655 decedents whose costs were not in the top 10%. The survey was fielded between December 19, 2017, and February 8, 2018. Main Outcomes and Measures: Meeting end-of-life wishes, discussions with next of kin and physicians, types of discordant care, and perceptions of amount of care received. Results: Surveys were completed by 715 of the 2281 next of kin in the all-decedent sample (mean [SD] decedent age, 80.9 [8.9] years; 361 [50.5%] male) for a 31% response rate; in 332 of the 1339 next of kin in the high-cost sample (mean [SD] decedent age, 75.5 [7.1] years; 194 [48.4%] male) for a 25% response rate; and in 659 of 2058 in the lower-cost sample (mean [SD] decedent age, 81.6 [8.8] years) for a 32% response rate. Respondents noted that high percentages of decedents received treatment that was concordant with their desires: 601 (88.9%) had their wishes met, 39 (5.9%) received a treatment they did not want, and 554 (84.1%) filled out an advance directive. A total of 509 respondents (82.5%) believed the amount of care was the right amount. Those with the highest costs had their wishes met at lower rates than those with lower costs (250 [80.1%] vs 553 [89.6%]). Conclusions and Relevance: In this Kaiser Permanente Southern California cohort, a large proportion of decedents 65 years and older had end-of-life discussions and documentation, had their wishes met, and received the amount of care they thought appropriate.


Subject(s)
Advance Care Planning/organization & administration , Family/psychology , Patient Preference/statistics & numerical data , Professional-Patient Relations , Terminal Care/organization & administration , Aged , Aged, 80 and over , Empathy , Female , Humans , Male , Patient Preference/psychology , Terminal Care/psychology
15.
Br J Hosp Med (Lond) ; 82(4): 1-6, 2021 Apr 02.
Article in English | MEDLINE | ID: mdl-33914627

ABSTRACT

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.


Subject(s)
Advance Care Planning/organization & administration , COVID-19/epidemiology , Communication , Terminal Care/organization & administration , Advance Care Planning/standards , Cardiopulmonary Resuscitation/standards , Empathy , Humans , Patient Care Planning , Personal Protective Equipment , SARS-CoV-2 , Telephone , Terminal Care/standards
16.
J Am Geriatr Soc ; 69(7): 1933-1940, 2021 07.
Article in English | MEDLINE | ID: mdl-33760226

ABSTRACT

BACKGROUND: The reasons for discordance between advance care planning (ACP) documentation and current preferences are not well understood. The POLST form offers a unique opportunity to learn about the reasons for discordance and concordance that has relevance for POLST as well as ACP generally. DESIGN: Qualitative descriptive including constant comparative analysis within and across cases. SETTING: Twenty-six nursing facilities in Indiana. PARTICIPANTS: Residents (n = 36) and surrogate decision-makers of residents without decisional capacity (n = 37). MEASUREMENTS: A semi-structured interview guide was used to explore the reasons for discordance or concordance between current preferences and existing POLST forms. FINDINGS: Reasons for discordance include: (1) problematic nursing facility practices related to POLST completion; (2) missing key information about POLST treatment decisions; (3) deferring to others; and (4) changes over time. Some participants were unable to explain the discordance due to a lack of insight or inability to remember details of the original POLST conversation. Explanations for concordance include: (1) no change in the resident's medical condition and/or the resident is unlikely to improve; (2) use of the substituted judgment standard for surrogate decision-making; and (3) fixed opinion about what is "right" with little to no insight. CONCLUSION: Participant explanations for discordance between existing POLST orders and current preferences highlight the importance of adequate structures and processes to support high quality ACP in nursing facilities. Residents with stable or poor health may be more appropriate candidates for POLST than residents with a less clear prognosis, though preferences should be revisited periodically as well as when there is a change in condition to help ensure existing documentation is concordant with current treatment preferences.


Subject(s)
Advance Care Planning/organization & administration , Advance Directive Adherence/psychology , Homes for the Aged , Nursing Homes , Patient Preference/psychology , Aged , Aged, 80 and over , Communication , Documentation , Female , Humans , Indiana , Male , Patient Comfort/organization & administration , Qualitative Research
17.
J Am Board Fam Med ; 34(Suppl): S16-S20, 2021 02.
Article in English | MEDLINE | ID: mdl-33622811

ABSTRACT

Advance care planning (ACP) is especially important during the COVID-19 pandemic. Previously identified barriers to ACP include lack of time during patient visits, billing, clinician and patient discomfort and lack of resources, and difficulties with documenting and accessing ACP documents. Here we describe new challenges and new opportunities for ACP that have arisen from the COVID-19 pandemic, both due to the complexities of the illness and expedited changes in some of the stagnancies in the health care system. The shared risk for COVID-19 that all people face brings urgency to institutional policy changes to ACP form completion. However, research should assess acceptability and effectiveness of these strategies.


Subject(s)
Advance Care Planning/organization & administration , COVID-19/therapy , Delivery of Health Care/organization & administration , Organizational Policy , Patient Preference , COVID-19/epidemiology , Critical Illness , Delivery of Health Care/methods , Humans , Pandemics , Professional-Patient Relations , Telemedicine/methods , Telemedicine/organization & administration , United States/epidemiology
18.
J Hosp Palliat Nurs ; 23(4): 316-322, 2021 08 01.
Article in English | MEDLINE | ID: mdl-33605646

ABSTRACT

Palliative and end-of-life care has been pushed to the forefront of medical care during the pandemic caused by the coronavirus-2019 (COVID-19). Palliative care organizations have responded to the growing demand for the rapid dissemination of research, clinical guidance, and instructions for care to clinicians, patients with COVID-19, and their caregivers by creating COVID-19 resource Web pages. Here, end users can access resources that can be updated in real time. These Web pages, however, can be variable in what resources they offer and for whom they are designed for (clinicians, patients, caregivers). Therefore, this project was conducted to consolidate these resources via summary tables of specific contents available through each Web page grouped by palliative care domains (eg, care discussion and planning, communication, symptom management, care access) and to identify the target audience. This environmental scan was conducted by compiling a comprehensive list of COVID-19 resource Web pages of palliative care organizations generated by reviewing previously published research studies and consulting with palliative care research experts. Snowballing techniques were used to identify resource Web pages not captured in the initial scan. Two reviewers independently evaluated eligible Web pages for content via a form developed for the study, and Cohen κ statistic was calculated to ensure interrater reliability. The final κ statistic was 0.76. Of the 24 websites screened, 15 websites met our eligibility criteria. Among the eligible resource Web pages, most (n = 12, 80%) had specific target audiences and care settings, whereas the rest presented information targeted to all audiences. Although 11 Web pages offered resources that addressed all 4 domains, only 1 Web page conveyed all 12 subdomains. We recommend the use of this guide to all frontline clinicians who require guidance in clinically managing patients with COVID-19 receiving palliative care and/or end-of-life care.


Subject(s)
Advance Care Planning/organization & administration , Bibliographies as Topic , Hospice Care/organization & administration , Palliative Care/organization & administration , Terminal Care/organization & administration , COVID-19/epidemiology , COVID-19/therapy , Humans , Internet , Pandemics , SARS-CoV-2
20.
J Nurs Scholarsh ; 53(2): 180-188, 2021 03.
Article in English | MEDLINE | ID: mdl-33476479

ABSTRACT

PURPOSE: Little is known regarding how advance care planning (ACP) interventions change with the progression of dementia. Thus, the primary purpose of this systematic review is to compare characteristics of ACP interventions across dementia stages. We also identify the role of nurses in implementing ACP interventions for persons with dementia and their surrogates. DESIGN: A systematic review of ACP intervention studies. METHODS: After searching PubMed, Web of Science, EMBASE, PsycArticles, the Cumulative Index to Nursing and Allied Health Literture (CINAHL), and Scopus, the final sample included 11 studies representing 10 interventions. We conducted a quality assessment and extracted data on dementia stage, intervention characteristics, and the role of nurses in the intervention. The extracted data were categorized according to stages of dementia, and analyzed to identify commonalities and differences between intervention characteristics. FINDINGS: Three ACP interventions focused on mild dementia and seven on advanced dementia. We observed four primary findings. First, we found a major difference in intervention recipients between the two dementia stages. Second, most ACP interventions included structured discussions regarding the person's life goals and values, goals of care, and preferences concerning future care via individual, face-to-face interactions. Third, ACP interventions designed to promote ongoing discussions and documentation were lacking. Finally, nurses played important roles in implementing ACP interventions. CONCLUSIONS: The findings suggest more nurse-led, dementia-related ACP interventions. In addition, ACP interventions should promote ongoing discussions and documentation and target persons with dementia and their surrogates in various countries. CLINICAL RELEVANCE: Many persons with dementia and their surrogates have limited knowledge about ACP; thus, more nurse-led ACP programs that reflect dementia stages may help them prepare for the situations in which persons with dementia lack decision-making capacity.


Subject(s)
Advance Care Planning/organization & administration , Dementia/nursing , Humans
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