"It's Like A Partnership": Exploring the Primary Care Experiences and Patient-Defined Goals of People Who Use Drugs.

BACKGROUND: Primary care is an important yet underutilized resource in addressing the overdose crisis. Previous studies have identified important aspects of primary care for people who use drugs (PWUD) and have found patient involvement in healthcare decisions and goal-setting to be especially critical. However, there has been limited research describing the primary care goals of PWUD. In harm reduction settings, where it is imperative that PWUD set their own goals, this research gap becomes especially relevant. OBJECTIVE: To explore how PWUD navigate primary care with a focus on understanding their primary care goals. DESIGN: A qualitative study using semi-structured interviews. PARTICIPANTS: PWUD currently engaged in primary care at the Respectful and Equitable Access to Comprehensive Healthcare (REACH) Program, a harm reduction-based primary care program in New York City. APPROACH: Between June 2022 and August 2022, we conducted 17 semi-structured interviews. Informed by phenomenology, transcripts were coded using both inductive and deductive codes and themes were developed using thematic analysis approaches. KEY RESULTS: Phenomenological analysis identified four core components that, together, created an experience that participants described as "a partnership" between patient and provider: (1) patient-provider collaboration around patient-defined healthcare goals; (2) support provided by harm reduction-based approaches to primary care anchored in incrementalism and flexibility; (3) care teams' ability to address healthcare system fragmentation; and (4) the creation of social connections through primary care. This holistic partnership fostered positive primary care experiences and supported participants' self-defined care goals, thereby facilitating meaningful care outcomes. CONCLUSIONS: To best meet the primary care goals of PWUD, these findings underscore the importance of primary care providers and programs facilitating such partnerships through organizational-level support anchored in harm reduction. Future research should explore how these experiences in primary care affect patient health outcomes, ultimately shaping best practices in the provision of high-quality primary care for PWUD.

Goal Setting In Medical Rehabilitation: A Narrative Review.

Goal setting is an integral part of rehabilitation and the rehabilitation process. The aim of rehabilitation is to optimize functioning. Therefore, rehabilitation professionals and patients together have to determine mutually which aspects of functioning they should aim at. From a clinical view, a formal procedure for setting goals should help to motivate patients, ensure cooperation of rehabilitation team members, help to identify relevant blind spots and provide a system to monitor patient changes. Applying goalsetting in rehabilitation represents a purpose in its own right, as it serves to strengthen the autonomy of patients and is a valuable tool to integrate personal motives, attitudes, meanings into the rehabilitation process. There is evidence that the introduction of goal setting into rehabilitation practice could enhance health-related quality of life and emotional states, especially self-efficacy. Mixed results have been reported regarding the patient motivation as well as activities and participation outcomes.

Evaluation showed that stakeholders valued the support provided by the Implementing Pediatric Advance Care Planning Toolkit.

AIM: This study described the development, and pilot evaluation, of the Implementing Pediatric Advance Care Planning Toolkit (IMPACT). METHODS: Key elements of paediatric advance care planning (ACP) were defined using a systematic review, a survey of 168 paediatricians and qualitative studies of 13 children with life-limiting conditions, 20 parents and 18 paediatricians. Participants were purposively recruited from six Dutch university hospitals during September 2016 and November 2018. Key elements were translated into intervention components guided by theory. The acceptability of the content was evaluated by a qualitative pilot study during February and September 2019. This focused on 27 children with life-limiting conditions from hospitals, a hospice and home care, together with 41 parents, 11 physicians and seven nurses who cared for them. RESULTS: IMPACT provided a holistic, caring approach to ACP, gave children a voice and cared for their parents. It provided information on ACP for families and clinicians, manuals to structure ACP conversations and training for clinicians in communication skills and supportive attitudes. The 53 pilot study participants felt that IMPACT was appropriate for paediatric ACP. CONCLUSION: IMPACT was an appropriate intervention that supported a holistic approach towards paediatric ACP, focused on the child's perspective and provided care for their parents.

Death: a foe to be conquered? Questioning the paradigm.

There are few certainties in life-death is one of them. Yet death is often thought of today as the 'loss of the battle' against illness, where in traditional societies it was the natural, meaningful, end to life. Medical knowledge and technologies have extended the possibilities of medical care and increased our life span. People living in most developed countries today can expect to survive to an advanced age and die in hospital rather than at home as in the past. Owing to these and other historical, cultural and social factors, our views on death have been skewed. Medical technology provides an arsenal of weapons to launch against death and the 'war against disease' has entrenched itself in medical philosophy. We now primarily experience death through the lens of a camera. Representations of 'death as spectacle' distort our perceptions and leave us ill-prepared for the reality. Additionally, death as a natural consequence of life has become much less visible than it was in the past due to our longer life expectancies and lack of infectious disease. The continued thrust for treatment, wedded with a failure to recognise the dying process, can rob individuals of a peaceful, dignified death. Progress being made in Advance Care Planning and palliative care is limited by the existing paradigm of death as a 'foe to be conquered'. It is time for a shift in this paradigm.

Caregivers' End-of-Life Care Goals for Persons with Severe Dementia Change Over Time.

BACKGROUND: Family caregivers make end-of-life (EOL) decisions for persons with severe dementia (PWSDs). It is not known whether the family caregivers' goals change over time. OBJECTIVE: Assess caregivers' EOL care goal for PWSDs and change in these goals over time. METHODS: Using a prospective cohort of 215 caregivers of PWSDs, we assessed the proportion of caregivers whose EOL care goal for PWSDs changed between two consecutive time points. Mixed effects multinomial regression models assessed factors associated with caregivers' EOL care goals for PWSD (maximal, moderate, minimal life extension); and change in EOL care goal from previous time point. RESULTS: At baseline, 20% of the caregivers had a goal of maximal life extension for their PWSD, and 59% changed their EOL care goal at least once over a period of 16 months. Caregivers of PWSDs with lower quality of life (RR: 1.15, CI: 1.06, 1.24), who expected shorter life expectancy for PWSDs (RR: 10.34, CI: 2.14, 49.99) and who had an advance care planning discussion (RR: 3.52, CI: 1.11, 11.18) were more likely to have a goal of minimal life extension for PWSD. Caregivers with higher anticipatory grief (RR: 0.96, CI: 0.93,1) were more likely to have a goal of maximal life extension. Change in PWSDs' quality of life and change in caregivers' anticipatory grief were associated with change in caregivers' EOL care goals. CONCLUSION: Caregivers' EOL care goals for PWSDs change over time with change in PWSD and caregiver related factors. Findings have implications regarding how health care providers can engage with caregivers.

The beneficial effect of a comprehensive diabetes care model on high-risk relatives accompanying patients with type 2 diabetes.

AIMS: Assess the effect of a diabetes program on lifestyle, metabolic, and mental health parameters in relatives of patients with T2D, and correlate changes between relatives and patients. METHODS: Relatives were included in a structured program for patients with T2D. They received individualized interventions or were asked to follow lifestyle modifications indicated to their patient with diabetes. Outcomes were change in BMI, fat loss, patients achieving LDL-c and triglycerides goals, exercise, and mental health indicators at three and twelve months. RESULTS: We included 200 relatives. Obesity was present in 42 %, hypertension in 8.5 %, hypercholesterolemia in 29.5 %, and hypertriglyceridemia in 46 % of relatives. Relatives lost - 3.7 kg and - 3.0 kg of body fat at three months and one-year evaluations. At least 60 % achieved normal triglycerides and LDL-c, and 40 % exercised at least 150 min/week. Anxiety symptoms dropped from 37 % to 22 % (p = 0.001), and depressive symptoms from 22 % to 12.9 % (p = 0.01) at three months. Correlations were found between the changes in relatives and patients in weight at three months (r = 0.22, p = 0.001), one year (r = 0.3, p < 0.001), and the number of goals achieved at one year. CONCLUSION: Relatives of patients with diabetes attending a multidisciplinary program for T2D benefit in metabolic, lifestyle, and mental health indicators.

Goals of care communication and higher-value care for patients with advanced-stage cancer: A systematic review of the evidence.

CONTEXT: Goals-of-care communication (GOCC) is recommended to increase the value of cancer care near the end of life (EOL). OBJECTIVES: Conduct a systematic review of the evidence that GOCC is associated with higher-value care. METHODS: We searched PubMed, Scopus, Ovid MEDLINE, EMBASE, EMB Reviews, CINAHL, and PsycInfo from inception to July 2019. We analyzed the population,design, and results and the authors' definitions of GOCC. Risk of bias was assessed. RESULTS: Thirty-two articles were selected. Ten articles reported results from 8 interventions; 17 characterized participants' perspectives; and 5 were retrospective The topics, behaviors, timing, and anticipated outcomes of GOCC varied significantly and were indistinguishable from practices such as advance care planning. GOCC typically focused on treatment outcomes rather than patients' goals. Four of 5 interventions increased evidence of GOCC after clinician training. Only one reported improved patient outcomes. CONCLUSION: No consensus exists about what GOCC entails. There is limited evidence that GOCC increases the value of EOL care. PRACTICE IMPLICATIONS: Future studies should focus on how to engage patients in conversations about their personal goals and integrate their goals into care planning. Clinicians can encourage GOCC by explaining how patients' goals influence decisions especially as treatment options become limited.

Hospice Patient Care Goals and Medical Students' Perceptions: Evidence of a Generation Gap?

BACKGROUND: The ability to perceive care goals of the dying may be an indicator of future quality patient-centered care. Research conducted on end-of-life goals indicates discrepancies between patients and physicians. OBJECTIVE: The aim of this study is to compare end-of-life care goals of hospice patients and medical student perceptions of patient care goals. DESIGN: Hospice patients and medical students were surveyed on their care goals and perceptions, respectively, using an 11-item survey of goals previously identified in palliative care literature. Medical student empathy was measured using the Interpersonal Reactivity Index. SETTINGS/PARTICIPANTS: Eighty hospice patients and 176 medical students (97 first-year and 79 third-year) in a New York State medical school. RESULTS: Medical students ranked 7 of the 11 care goals differently than hospice patients: not being a burden to family (p < .001), time with family and friends (p = .002), being at peace with God (p < .001), dying at home (p = .004), feeling that life was meaningful (p < .001), living as long as possible (p < .001), and resolving conflicts (p < .001). Third-year students were less successful than first-year students in perceiving patient care goals of hospice patients. No significant differences in medical student empathy were found based on student year. CONCLUSIONS: Medical students, while empathetic, were generally unsuccessful in perceiving end-of-life care goals of hospice patients in the psychosocial and spiritual domains. Differences impeding the ability of medical students to understand these care goals may be generationally based. Increased age awareness and sensitivity may improve future end-of-life care discussions. Overall, there is a need to recognize the greater dimensionality of the dying in order to provide the most complete patient-centered care.

Moving toward patient-centered care in the emergency department: Patient-reported expectations, definitions of success, and importance of improvement in pain-related outcomes.

OBJECTIVES: Musculoskeletal pain is a common emergency department (ED) presentation, and patient-centered care may improve quality of life, treatment satisfaction, and outcomes. Our objective was to investigate the expectations, definitions of success, and priorities of ED patients with musculoskeletal pain. METHODS: We conducted a cross-sectional survey of the demographic, clinical, and psychosocial characteristics of adult ED patients (n = 210) with musculoskeletal pain. Patients completed the Patient-Centered Outcomes Questionnaire to quantify usual, desired, expected, and successful levels of pain and interference with daily activities, fatigue, and emotion from 0 (none) to 100 (worst imaginable). They also reported the importance of improvement in each domain. Cluster analysis identified subgroups by importance ratings. Patients were asked their willingness to try various pharmacologic and nonpharmacologic treatments. Fully completed surveys were analyzed (n = 174). RESULTS: Most patients desired 100% resolution in each domain and defined treatment success as substantial (median = 63.2%-76.5%) reductions but expected only moderate (median = 45%-53.7%) improvements across all domains. Patients with previous pain episodes had similar desired levels but less stringent definitions of success and expectations for improvement. Cluster analysis identified three patient subgroups by importance ratings of each domain: (1) multiple domains important (n = 118) with high importance attached to all four domains, (2) pain and function important (n = 34) with high importance primarily for pain and interference with daily activities, and (3) only pain important (n = 22). Regardless of subgroup, there was a high willingness to use a variety of pharmacologic and nonpharmacologic treatments. DISCUSSION: ED patients with musculoskeletal pain have expectations and goals that include addressing impairments in function, improving quality of life, and reducing pain. CONCLUSIONS: Our findings indicate that: (1) patient subgroups by outcome priorities may exist that could inform multimodal, personalized approaches from the ED and (2) patients are flexible in which treatments they are willing to try to meet their individual goals.

Changes in Care Goals and Treatment Orders Around the Occurrence of Health Problems and Hospital Transfers in Dementia: A Prospective Study.

OBJECTIVES: To explore changes in care goals and treatment orders around the occurrence of pneumonia and intake problems, and whether hospitalization is in line with earlier agreed-upon do-not-hospitalize orders. DESIGN: Data were collected as part of the Dutch End of Life in Dementia study (2007-2011), a longitudinal observational study with up to 3.5 years of follow-up. SETTING: Long-term care facilities (N = 28) in the Netherlands. PARTICIPANTS: Newly admitted nursing home patients (N = 372) in various stages of dementia. MEASUREMENTS: Semiannually, physicians completed questionnaires about care goals and treatment orders, and they continuously registered episodes of pneumonia, intake problems and hospitalization. We report on changes in care goals and treatment orders during follow-up in relation to the developing of pneumonia and intake problems and on hospitalization and reasons for hospitalization. RESULTS: The proportion of patients with palliative care goals and do-not-treat orders rose during follow-up, especially before death. Treatment orders most frequently referred to resuscitation and hospitalization (do-not order increased from 73% to 92%, and from 28% to 76%, respectively). The proportions of patients with a palliative care goal and do-not-treat orders were similar after developing pneumonia, but increased after intake problems. During follow-up, 46 patients were hospitalized one or more times. Hospitalization occurred despite a do-not-hospitalize order in 21% of decisions. The most frequently reported reason for hospitalization was a fracture, especially in patients with a do-not-hospitalize order. CONCLUSION: Care plans, including global care goals (predominantly palliative care goals), are made soon after admission, and specific treatment orders are agreed upon in more detail when the condition of the patient worsens. Establishing care plans shortly after nursing home admission may help to prevent burdensome treatment.

Prognosis, Communication, and Advance Care Planning in Heart Failure: A Module for Students, Residents, Fellows, and Practicing Clinicians.

INTRODUCTION: The increasing prevalence, high symptom burden, and medical advances that often prolong the advanced phase of heart failure mandate an organized and thoughtful approach to medical decision making. However, many clinicians have difficulty discussing prognosis and goals of care with patients. Barriers include disease- and therapy-specific prognostication challenges in heart failure and a lack of evidence-based primary palliative care education initiatives. METHODS: In response, we developed this 45-minute training module, which consists of a case-based small-group session and a communication guide. The curriculum highlights prognostication challenges in heart failure and introduces an illness trajectory-based framework to cue iterative goals of care conversations. RESULTS: We piloted this learning module with 46 internal medicine residents and interdisciplinary palliative care fellows in groups of three to 15 and obtained anonymous quantitative and qualitative postsession learner survey data to examine feasibility and acceptability. Trainees rated the session highly. One hundred percent of learners either strongly agreed or agreed the session was clinically useful. Learners unanimously found the teaching methods effective, and most felt they could easily apply these skills to their clinical work. In open-ended feedback, learners said the session gave them a better understanding of the heart failure illness trajectory, an improved framework for discussing goals of care with heart failure patients, and specific language to use when having these discussions. DISCUSSION: This module represents a new paradigm for teaching both prognostication and advance care planning in heart failure in which illness trajectory guides timing and content of goals of care conversations.

[Improving shared decision-making for hospital patients: Description and evaluation of a treatment intensity assessment tool]. / Innovando en la toma de decisiones compartida con pacientes hospitalizados: descripción y evaluación de una herramienta de registro de nivel de intensidad terapéutica.

BACKGROUND AND AIM: Shared decision-making between patients and healthcare professionals is crucial to guarantee adequate coherence between patient values and preferences, caring aims and treatment intensity, which is key for the provision of patient-centred healthcare. The assessment of such interventions are essential for caring continuity purposes. To do this, reliable and easy-to-use assessment systems are required. This study describes the results of the implementation of a hospital treatment intensity assessment tool. MATERIAL AND METHODS: The pre-implementation and post-implementation results were compared between two cohorts of patients assessed for one month. RESULTS: Some record of care was registered in 6.1% of patients in the pre-implementation group (n=673) compared to 31.6% of patients in the post-implementation group (n=832) (P<.01), with differences between services. Hospital mortality in both cohorts is 1.9%; in the pre-implementation group, 93.75% of deceased patients had treatment intensity assessment. CONCLUSIONS: In hospital settings, the availability of a specific tool seems to encourage very significantly shared decision-making processes between patients and healthcare professionals -multiplying by more than 5 times the treatment intensity assessment. Moreover, such tools help in the caring continuity processes between different teams and the personalisation of caring interventions to be monitored. More research is needed to continue improving shared decision-making for hospital patients.