Health Care Proxy Research Articles

Feasibility of a Brief Intervention to Facilitate Advance Care Planning Conversations for Patients with Life-Limiting Illness in the Emergency Department.

Background: Advance care planning (ACP) conversations are an important intervention to provide care consistent with patient goals near the end of life. The emergency department (ED) could serve as an important time and location for these conversations. Objectives: To determine the feasibility of an ED-based, brief negotiated interview (BNI) to stimulate ACP conversations among seriously ill older adults. Methods: We conducted a pre/postintervention study in the ED of an urban, tertiary care, academic medical center. From November 2017 to May 2019, we prospectively enrolled adults ≥65 years of age with serious illness. Trained clinicians conducted the intervention. We measured patients' ACP engagement at baseline and follow-up (3 ± 1 weeks) and reviewed electronic medical record documentation of ACP (e.g., medical order for life-sustaining treatment [MOLST]). Results: We enrolled 51 patients (mean age = 71; SD 12), 41% were female, and 51% of patients had metastatic cancer. Median duration of the intervention was 11.8 minutes; few (6%) of the interventions were interrupted. We completed follow-up for 61% of participants. Patients' self-reported ACP engagement increased from 3.0 to 3.7 out of 5 after the intervention (p < 0.01). Electronic documentation of health care proxy forms increased (75%-94%, n = 48) as did MOLST (0%-19%, n = 48) during the six months after the ED visit. Conclusion: A novel, ED-based, BNI intervention to stimulate ACP conversations for seriously ill older adults is feasible and may improve ACP engagement and documentation.

Comparison of advanced care discussions between Chinese-American and Caucasian stage IV cancer patients at a single American cancer center.

e19081 Background: Timely discussions with cancer patients on prognosis, goals of care (GOC), and end-of-life care (EOLC) are essential components of quality care for diverse populations. Although Chinese-Americans represent one of the fastest growing ethnic groups in the United States, little is known about the utilization of these advanced care discussions with Chinese-American cancer patients. Methods: In this exploratory review, we collected data for 63 Chinese-American and 63 Caucasian stage IV solid cancer patients at a tertiary medical center who died 2013-2018. The following data points were compared: frequency and timing of prognosis, GOC, and EOLC discussions; family inclusion in discussions; healthcare proxy identification; DNR completion. Results: Chinese-American and Caucasian patients had similar frequencies of prognostic (76% vs 71%), GOC (51% vs 56%), and EOLC discussions (89% vs 84%). For all three types of conversations, Chinese-American patients had the discussions earlier on average (days before death: prognosis 86 vs 62; GOC 54 vs 37; EOLC 69 vs 48) and included family members in the discussions more often (30% vs 15%). Chinese-Americans identified healthcare proxies earlier (50 vs 45 days before death). Chinese-Americans had DNR orders placed later (29 vs 33 days before death) and were more likely to have DNR orders placed on the day of death (30% vs 23%). Conclusions: Despite similar frequency of advanced care discussions, earlier conversations, and earlier identification of healthcare proxies in the Chinese-American group, DNR orders were placed later and were often delayed until the day of death for Chinese-American patients. Further studies are needed to better explore the differences indicated in this preliminary study.

Crucial Conversations With Patients in the Era of COVID-19.

Crucial Conversations With Patients in the Era of COVID-19.

"The care programme should be a clearly explained proposal to which the patient freely consents"

Claude Finkelstein, president of the Fédération nationale des associations d'usagers en psychiatrie, has drawn up an inventory of care programmes, nine years after their establishment. In particular, she highlights the experience of patients and their familes regarding this system. The pitfalls concern the systematic search for the healthcare proxy and some application methods in the follow-up. Prospects for improvement should be discussed to give value to the interest of such programmes for the subjects.

Development of adecision aid for participative advance planning for people with dementia and their relatives

HintergrundEine Demenzdiagnose konfrontiert Betroffene mit vielen gesundheitlichen und sozialen Entscheidungen. Aufgrund der Progression der Demenz ist für eine aktive Teilnahme am Entscheidungsprozess eine rechtzeitige Auseinandersetzung mit diesen Themen ratsam. Eine professionelle Unterstützung kann dabei helfen, frühzeitig gemäß den eigenen Wünschen und Möglichkeiten vorauszuplanen.Material und MethodenIn einem mehrstufigen Prozess wurde eine Entscheidungshilfe basierend auf „advance care planning“ und „shared decision making“ entwickelt. Der Prototyp wurde an 8 Patient-Angehörigen-Dyaden aus einer Spezialambulanz für Früherkennung vorgetestet und für deren Bedürfnisse bestmöglich angepasst. In einer Pilotstudie wurde anschließend die Anwendbarkeit der Entscheidungshilfe bei weiteren 19 Patient-Angehörigen-Dyaden (Diagnose einer Alzheimer-Demenz bzw. gemischte Form; MMSE (Mini-Mental-State-Test-Summenwert) >20 und <27) mit ausgebildeten Gesprächsbegleitern als Intervention getestet.ErgebnisDas Ergebnis ist eine schriftliche Entscheidungshilfe für Menschen mit Demenz im Frühstadium und deren Angehörige, welche den Entscheidungsprozess bei wichtigen Themen (Vorsorgevollmacht, Patientenverfügung, Wohnen, Autofahren) unterstützt. Erste Ergebnisse weisen auf eine gute Akzeptanz und Handhabung hin. Patienten und Angehörige beschäftigten sich in hohem Maße mit den Themen und sprachen ihnen hohe Relevanz zu.DiskussionTrotz positiver Rückmeldung der Teilnehmer hinsichtlich Akzeptanz und Anwendbarkeit gab es größere Schwierigkeiten bei der Rekrutierung. Perspektivisch könnte der systematisierte Einsatz einer Entscheidungshilfe als Teil der Routineversorgung dazu beitragen, Entscheidungsprozesse dieser Patientengruppe zu unterstützen.Zusatzmaterial onlineDie Onlineversion dieses Beitrags (10.1007/s00115-020-00911-2) enthält weitere Infomaterialien. Beitrag und Zusatzmaterial stehen Ihnen auf www.springermedizin.de zur Verfügung. Bitte geben Sie dort den Beitragstitel in die Suche ein, das Zusatzmaterial finden Sie beim Beitrag unter „Ergänzende Inhalte“.

Free to Die: A Lutheran-Relational Approach to Medical Assistance in Dying

In 2016, Canada legalized Bill C-14, which removed from the Criminal Code medical assistance in dying (MAID) under certain circumstances. In essence, the Bill legalized what is commonly described as euthanasia, under the provisions that the patient has a terminal medical diagnosis, anticipates extreme suffering, is at least 18 years old and still maintains their own medical power of attorney, has received the same diagnosis from two separate doctors, and requests such a procedure without duress. The bill exempts doctors and nurses from culpability in murder, along with those aiding the medical staff. The bill replaces sections of the Criminal Code that criminalize death by suicide. In this article, I first review the theological and historical interpretation of suicide within the Christian church. I then offer a specifically Lutheran feminist framework of our baptism into death, Luther’s explanation of the First Commandment, and Christian freedom to affirm Christians’ faithful decisions in seeking medical assistance in dying.

Право пацієнта на припинення життєзабезпечувального лікування як складова права пацієнта на самовизначення компаративний аналіз практики судів Німеччини та Італії

The progress of advanced medical care technologies allowing to sustain and prolong the life of severely morbid, or terminally ill people arose a legal dispute that formed a rather delicate issue: has a patient a right to refute treatment even in spite of an apparent death as a consequence of it? With nearly no legislative or case-law background, a number of American courts came to different conclusions concerning prohibition of blood transfusion on basis of religious beliefs in a series of trials in the 1960s, though the issue of death was not stringently involved in them. As the life-sustaining machinery progressed, the courts faced more difficult lawsuits involving the withdrawal of treatment for terminally ill people being in permanent vegetative state, which featured the trials of Quinlan (1976), Saikewicz (1976) Eichner (1980), Leach (1980) and several subsequent trials, where American courts were the first to sanction an order to withdraw life-supporting treatment mostly upon medical report evidence suggesting no patient’s recovery is expected. The fragility of such trials was apparently distinguished from trials where the courts dealt with withdrawal of life-support appliances for brain-dead people which was clearly determined even by the 1970s medical machinery. In a few decades, the given issue came into the view of German, Italian and English courts. The first two states, belonging to the continental system of law, apparently lacked any legislation on withdrawal of life-supporting treament, which resulted in a number of contraversial judgments by German land courts in the 1990s and 200s, as well as a decade-long trial of Englaro in Italy, and a resonant judgment of Welby, which arose the issue of assisted suicide as well. As the legislatures were seemingly reluctant to elaborate passive euthanasia laws, all the burden of solving the issue was laid on the courts which managed to develop a body of case law on withdrawal of treatment enacting a number of principles so as to determine whether such a order to withdraw treatment is admissible, or it is not, and whether the court posseses subject matter to rule on similar issues. Herein, the advance healthcare directives (or living wills) designating the range of tolerable and intolerable invasive medical procedures and the powers of attorneys, predominantly known in English-speaking counties as “healthcare proxies”, play a substantial role as evidence, albeit their validity in fact may be challenged at trial. The given paper discusses the jurisprudence of German and Italian courts as well as the key principles which they have elaborated by adjudicating trials on withdrawal of treatment with an apparent subsequent death of the patient involved.

Improving Ambulatory Health Care Proxy Completion Rates: Implementing an Interdisciplinary Clinic-Based Process.

All adults should complete a health care proxy (HCP), especially those who are seriously ill or otherwise at increased risk of losing capacity. This study describes the implementation of an interdisciplinary process for helping patients complete HCPs during nonurgent visits at a large urban academic primary care practice between July 2014 and May 2017. The process was mapped using direct observations. Pre- and post-implementation measurement of the percent of patients who completed HCPs during their visit revealed significant improvement (1.4% vs 26.1% in the North Suite, special cause variation). Over the study period, the percentage of patients with HCP information rose significantly across the entire clinic (eg, 37% to 80% in the North Suite, Fisher exact test P < .0001; similar findings in other suites). Key facilitators and barriers to implementation were identified by physician leaders. An interdisciplinary process can sustainably improve the percentage of primary care patients with a completed HCP.

Effects of Brief Nurse Advance Care Planning Intervention with Visual Materials on Goal-of-Care Preference of Japanese Elderly Patients with Chronic Disease: A Pilot Randomized-Controlled Trial.

Purpose: Advance care planning is an important component of quality palliative care. In Asian countries, few randomized clinical trials have been reported. This pilot randomized-controlled trial examined the effects of brief nurse intervention with visual materials on the goal-of-care preference, cardiopulmonary resuscitation (CPR) preference, and designation of a health care proxy. Methods: This randomized clinical trial was performed from January to February 2018 on elderly Japanese patients with chronic disease. The patients were randomly assigned to a control group (brief nurse intervention using verbal descriptions) or intervention group (using visual materials). The primary endpoint was goal-of-care preference, and secondary outcomes included the following: (1) CPR preference, (2) presence of a designated health care proxy, (3) knowledge of CPR, and (4) readiness for advance care planning. Outcome measures were obtained at baseline and just after completion of the intervention. Results: A total of 220 patients were enrolled (117 in the intervention group and 103 in the control group). All patients completed post-intervention measurement. There was no significant difference between the groups in any of the outcome measures, while <5% of the participants wanted life-prolonging care as the goal of care at the baseline. Before/after comparisons indicated that, in both groups, the number of participants who designated a health care proxy significantly increased (29% to 65% vs. 22% to 52%, respectively; p < 0.001 each); and the knowledge and readiness scores significantly increased. Moreover, there was a significant increase in the number of patients who did not want CPR (55% to 67% with a terminal condition, p = 0.003; 67% to 80% with a bedridden condition, p < 0.001) in the intervention group. Conclusions: Brief nurse intervention increased documentation of a patient-designated health care proxy and improved the knowledge of CPR and patient readiness. Visual materials might help patients to imagine the actual situation regarding CPR.

Acute Psychological Stress is a Trigger for Stroke: A Case-Crossover Study

BackgroundConventional risk factors for stroke that have been identified are mostly chronic diseases that explain much of the variation as to who develops stroke. However, these risk factors do not equip us with the means to predict when an event like stroke will occur. It has been observed that acute events like stroke and coronary heart disease are preceded by episodes of acute stress. The present study was undertaken to determine whether acute psychological stress is a potential triggering factor for the occurrence of stroke. MethodsIn accordance with the case-crossover study design, patients or Legally Authorized Representative (LAR) were asked to report psychological stress during the two-hour hazard period before the event and during the control period, which was the same 2-hour time period the day before the event. Conditional logistic regression was used to compare each person's exposure during the hazard period to their exposure during the control period. ResultsA total of 151 stroke patients were interviewed. Acute psychological stress was associated with transient increased odds of stroke in the subsequent 2 hours that was 3.4 times higher than the odds during periods with no exposure to these triggers (95% confidence interval 1.55-7.50). ConclusionsAcute psychological stress is a potential independent triggering factor for the occurrence of stroke. Further confirmatory studies are required to help corroborate these findings and elucidate the mechanisms underlying this short-term increase in risk.

Ethical décision making and septic shock

Nurses can contribute to the decision-making process in emergency situations in cases of septic shock, particularly if the patient has not drawn up advance directives and/or nominated a health care proxy. They can undertake or facilitate the collective decision making on the legal and ethical level. The team's habitus in terms of ethical analysis and the gathering of initial data can help to ensure the patients wishes are respected.

Impact of a community health conversation upon advance care planning attitudes and preparation intentions

ABSTRACT Background: Advance care planning conversations and preparations do not occur as frequently as they should. Framing advance care planning as a health behavior and an opportunity for community engagement can help improve community-dwellers’ intentions to have discussions and preparations regarding facing serious illness, death and dying. Methods: A multi-setting confidential pre/post paper survey assessing advance care planning discussions and preparation intentions was given to community-dwelling citizens residing in the New York metropolitan area. Survey items were adapted from a previous end of life survey to include questions on chronic illnesses, important conversations, comfort levels and concerns about end of life. The intervention was a 1-hour presentation on advance care planning (importance, laws, effective communication and audience questions) Results: Our study found significant interest in discussing advanced care planning across age groups. There were significant changes for participant intentions regarding: having conversations with loved ones, a health care proxy or similar document and none; as well as differences in participant intentions for discussions with caregiver, family, friends, primary physician and no-one. Conclusion: Educating individuals on the importance of advance care planning may be effective in changing community dwellers’ intentions to start the conversation and put advanced care planning measures in place. Abbreviations: ACP: Advance Care Planning; CHAT: Conversations Health and Treatments; EoL: End of Life; HCP: Health Care Proxy; MOLST: Medical Orders for Life-Sustaining Treatments; PCP: Primary Care Physician

THE SOUND OF MUSIC: SHORT-TERM EFFECTS OF LIVE MUSIC PERFORMANCE ON THE COGNITIVE AND EMOTIONAL STATUSES OF RESIDENTIAL PATIENTS WITH MAJOR NEUROCOGNITIVE DISORDER

Introduction Patients with neurocognitive disorders (NCD) commonly experience a range of psychiatric symptoms such as depression, anxiety, psychosis, and agitation. 1 These comorbidities complicate the course of treatment for these patients as well as exacerbate caregiver burden. Since pharmacologic interventions are known to pose significant risks to these patients, there is great urgency to find additional non-pharmacologic options to improve quality of care. 1 Music therapy is becoming a more frequently used tool in different treatment settings and has been shown to improve anxiety and depression, however intensive and structured music therapy can also be a cost burden for residential facilities. 2 , 3 This study's aim was to assess the short-term benefits of a live music performance for residential patients with mild and moderate major NCD. Methods This is a prospective, non-blinded, longitudinal comparison study. Inclusion criteria were age 65-100, English speaking, and had either a diagnosis of major NCD, cognitive disorder, or dementia of the mild to moderate stage that required institutionalization at a residential facility. Exclusion criteria were severe presbycusis, and diagnosis of dementia or NCD of the severe stage. Participating residential facilities with connections to the Symphony of Soul Foundation and St. David's Foundation were asked to publicize this study to residents and their legally authorized representatives (LAR). The participants would then provide informed assent and consent, respectively, to enroll. The study intervention was a 30 minute live-performance of a set list of popular music from the 1930s-1950s (English language), given by a standard performer. The main statistical analysis will be a multivariate repeated measures comparison of scores that assess cognition, depression, and quality of life using the Montreal Cognitive Assessment (MoCA), Geriatric Depression Scale (GDS), and the Cornell-Brown Scale for Quality of Life (CBSQoL). The scales were administered 1 week before the study intervention to participating subjects for baseline scores, and then re-administered 1 week after the intervention. Different versions of the MoCA (v.1 and v.2) were used for the pre- and post-intervention assessments. Results A total of 8 subjects (n=8) and their respective LARs provided assent and consent to participate in the study. There was 1 complete dropout before the study began. The mean MoCA score pre-intervention, MoCApre = 7.3, with a 95% CI = [2.36, 12.25]; the mean MoCA score post-intervention, MoCApost = 9.4, with a 95% CI = [3.41, 15.39]; the difference between the two mean MoCA scores was not statistically significant, since the 95% CI for this difference was [-5.65, 9.85]. Subjects did not have scores that indicated clinical depression throughout the study, with a mean GDSpre = 1.5, and a mean GDSpost = 2.2. The mean CBSQoLpre = -3.67, with a 95% CI = [-10.91, 3.57]; the mean CBSQoLpost = 17, with a 95% CI = [10.86, 23.14]; the CBSQoL scores between the two groups had statistically significant difference as evident in non-overlapping CIs; the 95% CI for the difference between the two mean CBSQoL scores was [11.19, 30.15]. Conclusions This study's initial results suggested that there was a statistically significant improvement in the subjects’ quality of life after a brief, live-musical performance. However there were no significant differences in the subjects’ cognition and mood. The labor intensity that was required for the subjects to complete the pre- and post- intervention assessments was a notable barrier for them to participate effectively as evident by the dropout rate, and was also a deterrent for additional eligible subjects to enroll in the study. Decreasing the difficulty for subjects to participate in the future (e.g., through optimizing the testing environment, shortening the music performance) might therefore increase the sample size and improve the study's power and validity This research was funded by: Symphony of Soul Foundation, St. David's Foundation

POSTERIOR FOSSA MENINGIOMA WITH CEREBELLAR MASS EFFECT PRESENTING AS DECLINE IN COGNITIVE FUNCTION AND IMPAIRED AFFECTIVE MODULATION: REVIEW OF THE CEREBELLAR COGNITIVE AFFECTIVE SYNDROME

POSTERIOR FOSSA MENINGIOMA WITH CEREBELLAR MASS EFFECT PRESENTING AS DECLINE IN COGNITIVE FUNCTION AND IMPAIRED AFFECTIVE MODULATION: REVIEW OF THE CEREBELLAR COGNITIVE AFFECTIVE SYNDROME

Dying in the Neurointensive Care Unit After Withdrawal of Life-Sustaining Therapy: Associations of Advance Directives and Health-Care Proxies With Timing and Treatment Intensity.

Critically ill patients require a careful approach for prognosis and decision-making. The German health legislation aims to strengthen the role of advance directives (ADs) and health-care proxies (HCPs). Their impact within a dedicated neurocritical care setting is unknown. This study aimed to assess the practice of withdrawal or withholding of life-sustaining therapy (WOLST) in a German neurointensive care unit (NICU) focusing on whether AD or HCP is associated with timing and treatment intensity. Data on patients who died after WOLST at a dedicated NICU of a German university hospital, from 2010 to 2013, were retrospectively analyzed. Of 400 deceased patients, 310 (77.5%) died after initiation of WOLST. Among them, 68 (21.9%) were identified to have AD or HCP or both (AD + HCP). WOLST patients with AD, HCP, or AD + HCP were older than those without (median age: 77 vs 72 years, P < .001) but did not show any other distinct baseline features. There was no difference in the specific neurocritical care measures between the groups. Poisson regression analysis showed no significant difference in the probability of time-dependent WOLST initiation between those with and without AD/HCP, after adjusting for age and sex (adjusted incidence rate ratio, 1.10; 95% confidence interval, 0.94-1.28; P = .244). In this single-center study of mainly cerebrovascular NICU patients, AD or HCP was neither associated with an earlier WOLST nor associated with a difference in treatment intensity before WOLST. Further prospective studies should assess the emerging concept of advance care planning in neurocritical care.

Selected aspects of advance care planning according to Polish legal regulations — physician’s requirements

In 2017, the group of 109 experts from various countries developed the international consensus definition of advance care planning (ACP), which is defined as enabling individuals to define objectives and preferences for future medical treatment and care, to discuss these goals and preferences with family and healthcare providers, and to record and review these preferences if appropriate. ACP plays a significant role in the care of patients with chronic diseases, and especially may have an impact on the situation of palliative care patients, their families and healthcare professionals who look after them. This article analyses the legal constraints of ACP in Poland, and presents legal regulations related to some selected issues of ACP. One of the essential features of ACP is disclosing information to the patient and taking into account the patient’s decisions concerning the treatment and medical care. This is provided for in Polish law and healthcare professionals are obliged to observe it. Moreover, the Polish law includes broad principles applying to providing the patient’s family with information about diagnosis and prognosis of the disease. However, advance directives and health care proxy have not been regulated by national law yet. Therefore, it seems that the incorporation of ACP into Polish healthcare system requires the development of new legal regulations.

Evolocumab (PCSK9 Inhibitor) in Hereditary Spastic Paraplegia Type 5

Background: Hereditary spastic paraplegia type 5 (SPG5) is an ultra-rare neurogenetic axon-degenerative disease. The absence of treatment to prevent disease progression represents a major unmet clinical need. With a greater understanding of the pathophysiological basis of SPG5, opportunities have emerged for providing a targeted mechanistic therapy. The aims of this preliminary study were to investigate the efficacy of a PCSK9 inhibitor, Evolocumab, as a cholesterol-lowering therapy for reducing the accumulation of neurotoxic oxysterols and to evaluate the effects on axonal degeneration. Methods: This was as an open-label, evaluator-blind, single-center pilot study in which 23 SPG5 patients each received a single subcutaneous injections of 420 mg Evolocumab. Clinical data, CSF and blood were collected for analysis at enrollment and subsequent day 30. Induced pluripotent stem cells (iPSCs) were generated from the fibroblasts of a SPG5 patient to assess the mechanism of PCSK9 inhibitor’s effect on treatment. Findings: This trial is the largest sample-size prospective study among any treatment trial for SPG5. In this relatively homogeneous group of SPG5 patients (96% carried the same known nonsense mutation c.334 C>T; the median age was 34 years; disease duration was 16 years), we found that PCSK9 inhibitor significantly lowered levels of the toxic metabolite 27-hydroxycholesterol (27-OHC) in plasma (median (IQR), 589(487-644) vs. 396(348-468) ng/ml , P < 0.001). CSF 27-OHC decreased in 12 (71%) patients with a median reduction by 11% from the median 10 ng/ml before treatment to 8.3 ng/ml after treatment (P = 0.012). Most importantly, axonal degeneration, assessed by using neurofilament light (NFL) as a quantitative biomarker, receded at 30 days after single-dose Evolocumab treatment. Additionally, using iPSC-derived motor neurons, this study also showed that PCSK9 inhibitor had anti-apoptosis activity in SPG5 patients. Interpretation: The potential biological activity of cholesterol modulation for SPG5 patients, that is, alleviation of damage to axons from the effects of neurotoxic oxysterol, as well as the absence of adverse effects associated with the use of PCSK9 inhibitor therapy documented here deserves, in fact urges, full evaluation by well-designed long-term clinical trials. Trial Registration: This study is registered with ClinicalTrials.gov, number: NCT01892345. Funding Statement: This work has been supported by grants U1905210 (W.-J.C.), 81771230(W.-J.C.) and 81801130 (X.L.) from the National Natural Science Foundation of China, Joint Funds for the Innovation of Science and Technology of Fujian Province (2017Y9094) (W.-J.C.) and (2018Y9082) (N.W.), the Natural Science Foundation of Fujian Province (2019J02010) (W.-J.C.) and (2019J05076) (X.L.), the Key Clinical Specialty Discipline Construction Program of Fujian (N.W.). Declaration of Interests: All authors report no conflict of interest. Fujian medical university school of public health have received consultant fees as statistician to perform the data analysis. Ethics Approval Statement: The study protocol and informed consent procedures were approved by the institutional review board. Written informed consent was provided by the patients and their health care proxies.

Returning Home From Hospital Isn't Easy.

Returning Home From Hospital Isn't Easy Michael Ogg I was then 63 and, as now, was quadriplegic from severe multiple sclerosis. I had spent 10 weeks in a nursing home against my will to heal a pressure sore. Because of bad nursing home care, I became dehydrated, kidney indicators in my bloodwork were severely abnormal, and I [End Page 212] developed a fever. I was then hospitalized in the local community hospital. During that hospitalization, three things happened that had a significant bearing on my case. First, my mother arrived from England to visit me. She had wanted to visit while I was in the nursing home, but I'd discouraged her from doing that because transportation between my house (where she'd be staying) and the nursing home wasn't easy. Second, Laura (not her real name), a good friend and my health care proxy, came to visit not just me but also my mother, whom she'd befriended over the years. Third, Simon (again not his real name) had gotten to know of Laura because his mentee was applying to work with her husband as a physician. He also had an association with the hospital I was in as a senior physician. When my mother arrived, she spent the first night in my house, which she had done many times before, although not alone, and came to visit me the next morning. She appeared her usual self, although perhaps not quite as lively as usual, but that was easily attributable to her transatlantic flight. That night she vomited. I was alarmed but she said it was the "travel bug" which she'd had before. The following morning she visited again but also Simon came, not only to see me but also to visit my mother because, via Laura, he had become very interested in my mother's World War II survival story. (My mother was a Holocaust survivor. Partly through this connection, Simon and I later became good friends.) Again my mother vomited that night and now I was very concerned. But I was sick in hospital and despite my pleading with her to get medical assistance, I was limited in what I could do. I'd alerted two friends but all they could do was take her to a strip mall urgent care clinic. (My previous experience of such places, not for my own care, is that they're worse than useless.) Laura arrived the next day by train. Like me, she's also a wheelchair user and doesn't drive. When she met my mother, she saw instantly that she was not well. After another night of vomiting, my mother now recognized that she needed medical intervention, so it was not difficult for Laura to send her to the Emergency Department of the hospital I was in. Laura followed by bus and quickly found that my mother had been taken for an emergency CT scan. Laura then came to my room, told me what had happened, and we both waited anxiously for the radiology report. The physician from the Emergency Department called later with the news: There appeared to be a blockage in her Gastrointestinal Tract, a very serious condition requiring emergency surgery. The surgeon called late that evening and told us that the surgery had gone better than he had expected but that she would still have a long recovery starting in the Intensive Care Unit. What started with just me in the hospital now turned into my mother and I both in the hospital, one floor apart, Laura shuttling between both of us providing invaluable assistance, and Simon also helping behind the scenes. After a day or two, my mother and I could finally videoconference via the hospital's WiFi network. I almost forgot that not only did I still have to recover, but I also had to organize my homecare from scratch. I was in dispute with my care organization and particularly my Primary Care Physician (PCP). I was not just quadriplegic: I had absolutely no control of my arms, hands nor legs. I needed assistance with everything: getting out of bed in the morning, toileting, showering, dressing, feeding, etc. I wouldn...

Development of a Questionnaire to Assess Patient Priorities in Hip Fracture Care.

Background:Patient reported outcome measures (PROMs) are becoming well recognized as an important component of health care outcomes and determinants of value in patient-centered care. Yet, there is emerging recognition that guidance is lacking in the utilization of PROMs in hip fracture patients. The aim of this study was to collect input from hip fracture patients and their health care advocates as proxies to identify outcomes that are important and to gain insight into which ones are of greatest importance.Methods:A cross-section of patients aged 65 and older treated for hip fractures at a single level 1 trauma center within the previous 3 to 9 months was identified. Semistructured telephone interviews of patients and/or health care proxies were performed in 2 phases: (1) concept identification and conceptual framework development and (2) item generation and assessment of relative importance of health care outcomes. Each phase was completed by separate patient cohorts.Results:Sixty-four interviews were completed. Eighteen interviews with 13 patients and 5 proxies were completed for framework development. Forty-six interviews with 33 patients and 13 proxies were completed for the assessment of relative importance. Care team and communication were reported as important in hip fracture patients. Physical outcomes were ranked as most important by only 9% of respondents. “Having confidence that I/my loved one received the best care possible” was perceived as very important by 98% of respondents and “Having access to the surgeon” was perceived as very important by 76% of the respondents.Conclusions:In our study, communication between patients and care providers as well as collaboration among patients’ care providers ranked as the most important postoperative preferences in our cohort. Notably, physical outcomes were ranked as most important by only 9% of respondents.

Advance Care Planning: A Three-Phase Community Initiative, Educating Clinicians and Engaging Employers in NY’s Capital District

Abstract Advance Care Planning (ACP) emphasizes the process of communication necessary to assist individuals in making informed decisions about their future medical care. In response to the Institute of Medicine’s (IOM) call for enriching preparation of Advance Directives (AD) in their Dying in America consensus report of 2014, this author developed, designed and initiated a three-phase program to heighten awareness of ACP in New York’s Capital Region. Phase I, Community Conversations, is directed toward healthy individuals who are upstream from illness. Individuals in faith-based groups and civic organizations are provided tools and resources to prepare their own Healthcare Proxies, Living Wills and conduct important conversations with their loved ones about honoring their wishes and goals. Phase II, Advancing ACP Education in Medical Practices, is a structured training program for clinical professionals who receive certification as ACP facilitators and conduct ACP activities with their patients including conversations about what matters most and preparation of ADs for their medical records. Phase III, Advance Care Planning Education Through Employers, is a program which reaches people in their workplace. The purpose of this phase is twofold: to meet the needs of individuals who might not be otherwise exposed to ACP information, and to engage employers who sustain the important preparation of ADs through their human resources departments. A blueprint for each phase was designed for replication in other communities. Over a five-year period, and phase implementation, the program has been recognized as a premier resource for Advance Care Planning outreach. The project demonstrates the initiative, scope and activities that have far-reaching implications for the preparedness and health of an aging community. This review represents key elements and discovery with respect to all three phases of the project.