Improving Communication About Serious Illness in Primary Care: A Review.

IMPORTANCE: The Institute of Medicine recently called for systematic improvements in clinician-led conversations about goals, values, and care preferences for patients with serious and life-threatening illnesses. Studies suggest that these conversations are associated with improved outcomes for patients and their families, enhanced clinician satisfaction, and lower health care costs; however, the role of primary care clinicians in driving conversations about goals and priorities in serious illness is not well defined. OBJECTIVE: To present a review of a structured search of the evidence base about communication in serious illness in primary care. EVIDENCE REVIEW: MEDLINE was searched, via PubMed, on January 19, 2016, finding 911 articles; 126 articles were reviewed and selected titles were added from bibliography searches. FINDINGS: Review of the literature informed 2 major topic areas: the role of primary care in communication about serious illness and clinician barriers and system failures that interfere with effective communication. Literature regarding the role that primary care plays in communication focused primarily on the ambiguity about whether primary care clinicians or specialists are responsible for initiating conversations, the benefits of primary care clinicians and specialists conducting conversations, and the quantity and quality of discussions. Timely and effective communication about serious illness in primary care is hampered by key clinician barriers, which include deficits in knowledge, skills, and attitudes; discomfort with prognostication; and lack of clarity about the appropriate timing and initiation of conversations. Finally, system failures in coordination, documentation, feedback, and quality improvement contribute to lack of conversations. CONCLUSIONS AND RELEVANCE: Clinician and system barriers will challenge primary care clinicians and institutions to meet the needs of patients with serious illness. Ensuring that conversations about goals and values occur at the appropriate time for seriously ill patients will require improved training, validation, and dissemination of patient selection tools, systems for conducting and revisiting conversations, accessible documentation, and incentives for measurement, feedback, and continuous improvement.

Strategic targeting of advance care planning interventions: the Goldilocks phenomenon.

Strategically selecting patients for discussions and documentation about limiting life-sustaining treatments-choosing the right time along the end-of-life trajectory for such an intervention and identifying patients at high risk of facing end-of-life decisions-can have a profound impact on the value of advance care planning (ACP) efforts. Timing is important because the completion of an advance directive (AD) too far from or too close to the time of death can lead to end-of-life decisions that do not optimally reflect the patient's values, goals, and preferences: a poorly chosen target patient population that is unlikely to need an AD in the near future may lead to patients making unrealistic, hypothetical choices, while assessing preferences in the emergency department or hospital in the face of a calamity is notoriously inadequate. Because much of the currently studied ACP efforts have led to a disappointingly small proportion of patients eventually benefitting from an AD, careful targeting of the intervention should also improve the efficacy of such projects. A key to optimal timing and strategic selection of target patients for an ACP program is prognostication, and we briefly highlight prognostication tools and studies that may point us toward high-value AD interventions.

Spiritual well-being in patients with advanced heart and lung disease.

OBJECTIVE: The purpose of this study was to evaluate levels of spiritual well-being over time in populations with advanced congestive heart failure (CHF) or chronic obstructive lung disease (COPD). METHOD: In a prospective, longitudinal study, patients with CHF or COPD (each n = 103) were interviewed at baseline and every 3 months for up to 30 months. At each interview, patients completed: the basic faith subscale of the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp) questionnaire, the Memorial Symptom Assessment Scale (MSAS), the Rand Mental Health Inventory (MHI), the Multidimensional Index of Life Quality (MILQ), the Sickness Impact Profile (SIP), and the Short Portable Mental Health Questionnaire (SPMSQ). RESULT: The mean age was 65 years, 59% were male, 78% were Caucasian, 50% were married, 29% lived alone, and there was no significant cognitive impairment. Baseline median FACIT-Sp score was 10.0 on a scale of 0-16. FACIT-Sp scores did not change over time and multivariate longitudinal analysis revealed higher scores for black patients and lower scores for those with more symptom distress on the MSAS-Global Distress Index (GDI) (both p = 0.02). On a separate multivariate longitudinal analysis, MILQ scores were positively associated with the FACIT-Sp and the MHI, and negatively associated with the MSAS-GDI and the SIP (all p-values < 0.001). SIGNIFICANCE OF RESULTS: In advanced CHF and COPD, spiritual well-being remains stable over time, it varies by race and symptom distress, and contributes to quality of life, in combination with symptom distress, mental health and physical functioning.

Integrating palliative care in the intensive care unit.

The admission of cancer patients into intensive care units (ICUs) is on the rise. These patients are at high risk for physical and psychosocial suffering. Patients and their families often face difficult end-of-life decisions that highlight the importance of effective and empathetic communication. Palliative care teams are uniquely equipped to help care for cancer patients who are admitted to ICUs. When utilized in the ICU, palliative care has the potential to improve a patient's symptoms, enhance the communication between care teams and families, and improve family-centered decision making. Within the context of this article, we will discuss how palliative care can be integrated into the care of ICU patients and how to enhance family-centered communication; we will also highlight the care of ICU patients at the end of life.

Monolithic moral frameworks: how are the ethics of palliative sedation discussed in the clinical literature?

A variety of moral frameworks can assist clinicians in making ethical decisions. In examining articles on palliative sedation and terminal extubation, we were struck that bioethical discussions uniformly appealed to principlism and especially to the rule of double effect. Other moral frameworks were rarely invoked, an observation consistent with Daniel Callahan's assertion that principlism has a "blocking effect" on broader ethical deliberation. We review here the principle of double effect as it applies to clinical acts that may hasten death, and present one radically different ethical formulation developed by Dan Brock. We then offer brief examples of how clinicians might use other moral frameworks to assess the ethics of preemptive sedation for terminal extubation. We argue for greater moral pluralism in approaching end-of-life decisions.

Characteristics of palliative care consultation services in California hospitals.

BACKGROUND: Although hospital palliative care consultation services (PCCS) can improve a variety of clinical and nonclinical outcomes, little is known about how these services are structured. METHODS: We surveyed all 351 acute care hospitals in California to examine the structure and characteristics of those hospitals with PCCS. RESULTS: We achieved a 92% response rate. Thirty-one percent (n=107) of hospitals reported having a PCCS. Teams commonly included physicians (87%), social workers (80%), spiritual care professionals (77%), and registered nurses (71%). Nearly all PCCS were available on-site during weekday business hours; 50% were available on-site or by phone in the weekday evenings and 54% were available during weekend daytime hours. The PCCS saw an average of 347 patients annually (median=310, standard deviation [SD]=217), or 258 patients per clinical full-time equivalent (FTE; median=250, SD=150.3). Overall, 60% of consultation services reported they are struggling to cope with the workload. On average, patients were in the hospital 5.9 days (median=5.5, SD=3.3) prior to referral to PCCS, and remained in the hospital for 6 days (median=4, SD=7.9) following the initial consultation. Patient and family meetings were an aspect of the consultation in 74% of cases. Overall, 21% of consultation patients were discharged home with hospice services and 25% died in the hospital. CONCLUSIONS: There is variation in how PCCS in California hospitals are structured and in the ways they engage with patients. Ultimately, linking PCCS characteristics and practices to patient and family outcomes will identify best practices that PCCS can use to maximize quality.

Improving access to palliative care through an innovative quality improvement initiative: an opportunity for pay-for-performance.

BACKGROUND: Improving access to palliative care is an important priority for hospitals as they strive to provide the best care and quality of life for their patients. Even in hospitals with longstanding palliative care programs, only a small proportion of patients with life-threatening illnesses receive palliative care services. Our two well-established palliative care programs in large academic hospitals used an innovative quality improvement initiative to broaden access to palliative care services, particularly to noncancer patients. METHODS: The initiative utilized a combination of electronic and manual screening of medical records as well as intensive outreach efforts to identify two cohorts of patients with life-threatening illnesses who, according to University HealthSystems Consortium (UHC) benchmarking criteria, would likely benefit from palliative care consultation. Given the differing cultures and structure of the two institutions, each service developed a unique protocol for identifying and consulting on suitable patients. RESULTS: Consultation rates in the target populations tripled following the initiative: from 16% to 46% at one hospital and from 15% to 48% at the other. Although two different screening and identification processes were developed, both successfully increased palliative care consultations in the target cohorts. CONCLUSION: Quality improvement strategies that incorporate pay-for-performance incentives can be used effectively to expand palliative care services to underserved populations.

The need for safeguards in advance care planning.

The recent uproar about Medicare "death panels" draws attention to public and professional concerns that advance care planning might restrict access to desired life-sustaining care. The primary goal of advance care planning is to promote the autonomy of a decisionally incapacitated patient when choices about life-sustaining treatments are encountered, but the safety of this procedure has not received deserved scrutiny. Patients often do not understand their decisions or they may change their mind without changing their advance care directives. Likewise, concordance between patients' wishes and the understanding of the physicians and surrogate decision makers who need to represent these wishes is disappointingly poor. A few recent reports show encouraging outcomes from advance care planning, but most studies indicate that the procedure is ineffective in protecting patients from unwanted treatments and may even undermine autonomy by leading to choices that do not reflect patient values, goals, and preferences. Safeguards for advance care planning should be put in place, such as encouraging physicians to err on the side of preserving life when advance care directives are unclear, requiring a trained advisor to review non-emergent patient choices to limit life-sustaining treatment, training of clinicians in conducting such conversations, and structured discussion formats that first address values and goals rather than particular life-sustaining procedures. Key targets for research include: how to improve completion rates for person wanting advance care directives, especially among minorities; more effective and standardized approaches to advance care planning discussions, including how best to present prognostic information to patients; methods for training clinicians and others to assist patients in this process; and systems for assuring that directives are available and up-to-date.

Palliative care services in California hospitals: program prevalence and hospital characteristics.

CONTEXT: In 2000, 17% of California hospitals offered palliative care (PC) services. Since then, hospital-based PC programs have become increasingly common, and preferred practices for these services have been proposed by expert consensus. OBJECTIVES: We sought to examine the prevalence of PC programs in California, their structure, and the hospital characteristics associated with having a program. METHODS: A total of 351 acute care hospitals in California completed a survey that determined the presence of and described the structure of PC services. Logistic regression identified hospital characteristics associated with having a PC program. RESULTS: A total of 324 hospitals (92%) responded, of which 44% (n=141) reported having a PC program. Hospitals most likely to have PC programs were large nonprofit facilities that belonged to a health system, had teaching programs, and had participated in a training program designed to promote development of PC services. Investor-owned sites (odds ratio [OR]=0.08; 95% confidence interval [CI]=0.03, 0.2) and city/county facilities (OR=0.06; 95% CI=0.01, 0.3) were less likely to have a PC program. The most common type of PC service was an inpatient consultation service (88%), staffed by a physician (87%), social worker (81%), chaplain (76%), and registered nurse (74%). Most programs (71%, n=86) received funding from the hospital and were expected to meet goals set by the hospital or health system. CONCLUSION: Although the number of hospital-based PC services in California has doubled since 2000, more than half of the acute care hospitals still do not provide PC services. Developing initiatives that target small, public, and investor-owned hospitals may lead to wider availability of PC services.

Humane terminal extubation reconsidered: the role for preemptive analgesia and sedation.

Patient comfort is not assured by common practices for terminal extubation. Treatment guidelines suggest minimizing dosage of opioids and sedatives. Multiple lines of evidence indicate that clinicians are limited in their ability to recognize distress in such patients and tend to undermedicate patients in distress. Yet suffering of any significant degree should be unacceptable. For painful procedures, such as surgery, the analogous practice of postponing anesthesia until the patient evidences discomfort would never be tolerated. Waiting for signs of suffering before initiating excellent analgesia and sedation inexorably subjects patients to distress. Therefore, when death is inevitable and imminent after extubation, suffering should be anticipated, concerns about respiratory depression dismissed, and vigorous preemptive deep sedation or anesthesia provided.

The end-of-life family meeting in intensive care part I: Indications, outcomes, and family needs.

This is a three-part article that reviews the literature on end-of-life family meetings in intensive care, focused on situations when the patient cannot participate. Family meetings in end-of-life care, especially when conducted prophylactically or proactively, have been shown to be effective procedures for improving family and staff satisfaction and even reducing resource utilization. The first part of the article outlines the family needs that should be addressed in such meetings, including clinician availability, consistent information sharing (especially of prognosis), empathic communication and support, facilitation of bereavement, and trust. The second part addresses family-centered, shared decision making and sources of conflict, as well as related communication and negotiation skills and how to end the meeting. Families and clinicians differ in 1) their understanding of the patient's condition and prognosis; 2) the emotional impact of the illness, particularly the personal meaning of pursuing recovery or limiting supports; and 3) their views of how to make decisions about life-prolonging treatments. The final part draws on the previous two sections to present a structured format and guide for communication skills in conflictual meetings. Ten steps for a humane and effective meeting are suggested, illustrated with sample conversations.