Background: Despite evidence showing that goals of care (GOC) conversations increase the likelihood that patients facing a serious illness receive care that is concordant with their wishes, only a minority of at-risk patients receive the opportunity to engage in such conversations.
Objective: The Preventing Readmissions through Effective Partnerships—Communication and Palliative Care (PREP-CPC) intervention was designed to increase the frequency of GOC conversations for hospitalized patients facing serious illness.
Methods: The PREP-CPC employed a sequential, multicohort design using a yearlong mentored implementation approach to support nonpalliative care health-care professionals at participating hospitals to implement quality improvement projects focused on GOC conversations.
Results: Over the 3-year study period, 134 clinicians from 29 hospital teams were trained to facilitate GOC conversations. After the kickoff conference, participants reported improvements in their confidence in facilitating GOC conversations. The hospital teams then instituted site-specific pilot interventions to promote GOC conversations, identifying essential elements required for ongoing improvement. Since projects varied by hospital, results did as well, but reported positive outcomes included increased GOC conversations, increased Practitioner Orders for Life-Sustaining Treatment form completion rates, new screening and documentation methods, and increased support from leadership.
Conclusions: The PREP-CPC pilot successfully engaged a diverse set of hospitals to participate in quality improvement collaborative promoting primary palliative care and more frequent GOC conversations. This initiative revealed several lessons that should guide future interventions.
Nalbuphine (Nubain) is a unique opioid analgesic that was first manufactured in the 1970s. It is not a controlled substance in the United States as it was removed from the shedule II drug list in 1976 in response to assuring safety data. Considering ongooing opioid shortages in the acute settings, it is prudent to re-examine malbuphine as an analgesic for serious ill patients.
Cet ouvrage aborde la question délicate des frères et soeurs d'enfant gravement malade ou atteint d'un handicap. Des membres de fratries témoignent de leur vécu et des émotions qui les traversent. En parallèle, des experts apportent des pistes de réflexion afin de mieux répondre aux besoins affectifs et relationnels de ces enfants.
OBJECTIVES: To develop a generalizable advance care planning ACP intervention for children and children, adolescents, and young adults with serious illness using a multi-stage stakeholder driven approach.
STUDY DESIGN: We first convened an expert panel of multidisciplinary HCPs, researchers, and parents to delineate key ACP intervention elements. We then adapted an existing adult guide for use in pediatrics and conducted focus groups and interviews with HCPs, parents and seriously ill AYAs to contextualize perspectives on ACP communication and our pediatric serious illness communication program (PediSICP). Using thematic analysis, we identified guide adaptations, preferred content and barriers for PediSICP implementation. Expert panelists then reviewed, amended and finalized the guide.
RESULTS: Stakeholders (34 HCPs, 9 parents, and 7 seriously ill AYAs) participated in focus groups and interviews. Stakeholders validated and refined the guide and PediSICP intervention and identified barriers to PediSICP implementation including need for HCP training, competing demands, uncertainty regarding timing and documentation of ACP discussions.
CONCLUSION: The finalized PediSICP intervention includes a structured HCP and family ACP conversation occasion supported by a three-part communication tool and bolstered by focused HCP training. We also identified strategies to ameliorate implementation barriers. Future research will determine feasibility of the PediSICP and whether it improves care alignment with patient and family goals.
Developing solid communication-based partnerships through obtaining illness narratives allows for an understanding of patients' social resources, values, and beliefs and allows an opportunity to provide person-centered care. This study aimed to elicit cocreated illness narratives from persons of color who have serious illness. Twenty patients receiving care for serious illness were interviewed at a large academic medical center. The interviews focused on how illness affected patients' lives and were followed by formation of illness narratives. From the persons living with serious illness, 3 main themes emerged: (1) time, (2) life changes, and (3) family. Participants described how illness did influence their lifestyles and identities but did not define their personhood. Family influence had a lasting effect on participants' values and beliefs, and family presence was viewed as valuable in their current lives. Narratives from persons of color with serious illness can provide an intimate account informing nurses' understanding of patients' illness experiences and may enhance communication between nurses and patients.
OBJECTIVE: One of the main goals of the Family Talk Intervention (FTI) is to increase communication within families with dependent children about illness-related consequences and to support parenting. FTI is family-centered and includes six manual-based meetings led by two interventionists. This study aims to evaluate the feasibility of the FTI in terms of acceptability from the perspective of parents in families with dependent children where one parent receives specialized palliative home care.
METHOD: A descriptive design employing mixed methods was used to evaluate the FTI in specialized palliative home care. In total, 29 parents participated in interviews and responded to a questionnaire following FTI. Qualitative content analysis and descriptive statistics were used for analyses.
RESULTS: FTI responded to both the ill parent's and the healthy co-parent's expectations, and they recommended FTI to other families. Parents found the design of FTI to be well-structured and flexible according to their families' needs. Many parents reported a wish for additional meetings and would have wanted FTI to start earlier in the disease trajectory. Parents also would have wished for a more thorough briefing with the interventionists to prepare before the start. The importance of the interventionists was acknowledged by the parents; their professional competence, engagement, and support were vital for finding ways to open communication within the family. The FTI meetings provided them with a setting to share thoughts and views. Parents clearly expressed that they would never have shared thoughts and feelings in a similar way without the meetings.
SIGNIFICANCE OF RESULTS: According to parents, FTI was found acceptable in a palliative home care context with the potential to add valuable support for families with minor children when a parent is suffering from a life-threatening illness.
BACKGROUND: Despite having high comorbidity rates and shortened life expectancy, patients with ESKD may harbor unrealistically optimistic expectations about their prognoses. Whether this affects resuscitation orders is unknown.
METHODS: To determine whether do-not-resuscitate (DNR) orders differ among patients with ESKD compared with other critically ill patients, including those with diseases of other major organs, we investigated DNR orders on admission to intensive care units (ICUs) among 106,873 patients in the United States.
RESULTS: Major organ disease uniformly associated with increased risk of hospital mortality, particularly for cirrhosis (adjusted odds ratio [aOR], 2.67; 95% confidence interval [95% CI], 2.30 to 3.08), and ESKD (aOR, 1.47; 95% CI, 1.31 to 1.65). Compared with critically ill patients without major organ disease, patients with stroke, cancer, heart failure, dementia, chronic obstructive pulmonary disease, and cirrhosis were statistically more likely to have a DNR order on ICU admission; those with ESKD were not. Findings were similar when comparing patients with a single organ disease with those without organ disease. The disconnect between prognosis and DNR use was most notable among Black patients, for whom ESKD (compared with no major organ disease) was associated with a 62% (aOR, 1.62; 95% CI, 1.27 to 2.04) higher odds of hospital mortality, but no appreciable difference in DNR utilization (aOR, 1.06; 95% CI, 0.66 to 1.62).
CONCLUSIONS: Unlike patients with diseases of other major organs, critically ill patients with ESKD were not more likely to have a DNR order than patients without ESKD. Whether this reflects a greater lack of advance care planning in the nephrology community, as well as a missed opportunity to minimize potentially needless patient suffering, requires further study.
PURPOSE: Guidelines recommend earlier advance care planning discussions focused on goals and values (serious illness communication) among oncology patients. We conducted a prospective, cross-sectional quality improvement evaluation of patients who had a serious illness conversation (SIC) with an oncology clinician using the Serious Illness Conversation Guide to understand patient perceptions of conversations using a structured guide.
METHODS: We contacted 66 oncology patients with an SIC documented in the electronic health record. Thirty-two patients (48%) responded to survey and/or structured interview questions by telephone. We used summary statistics and thematic analysis to analyze results.
RESULTS: Twenty-eight respondents (90%) reported that the SIC was worthwhile. Seventeen respondents (55%) reported that the conversation increased their understanding of their future health, and 18 (58%) reported that the conversation increased their sense of closeness with their clinician. Although the majority of respondents (28 [90%]) reported that the conversation increased (13 [42%]) or had no effect (15 [48%]) on their hopefulness, a small minority (3 [10%]) reported a decrease in hopefulness. Qualitative analysis revealed 6 themes: clinician-patient relationship, impact on well-being, memorable characteristics of the conversation, improved prognostic understanding, practical planning, and family communication.
CONCLUSION: SICs are generally acceptable to oncology patients (nonharmful to the vast majority, positive for many). Our qualitative analysis suggests a positive impact on prognostic understanding and end-of-life planning, but opportunities for improvement in the delivery of prognosis and preparing patients for SICs. Our data also identify a small cohort who responded negatively, highlighting an important area for future study.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
Context/Objective: Essential indicators of high-quality end-of-life care in intensive care units (ICUs) have been established but examined inconsistently and predominantly with small samples, mostly from Western countries. Our study goal was to comprehensively measure end-of-life-care quality delivered in ICUs using chart-derived process-based quality measures for a large cohort of critically ill Taiwanese patients.
Methods: For this observational study, patients with APACHE II score =20 or goal of palliative care and with ICU stay exceeding three days ( N = 326) were consecutively recruited and followed until death.
Results: Documentation of process-based indicators for Taiwanese patients dying in ICUs was variable (8.9%–96.3%), but high for physician communication of the patient's poor prognosis to his/her family members (93.0%), providing specialty palliative-care consultations (73.3%), a do-not-resuscitate order in place at death (96.3%), death without cardiopulmonary resuscitation (93.5%), and family presence at patient death (76.1%). Documentation was infrequent for social-worker involvement (8.9%) and interdisciplinary family meetings to discuss goals of care (22.4%). Patients predominantly (79.8%) continued life-sustaining treatments (LSTs) until death and died with full life support, with 88.3% and 58.9% of patients dying with mechanical ventilation support and vasopressors, respectively.
Conclusions: Taiwanese patients dying in ICUs heavily used LSTs until death despite high prevalences of documented prognostic communication, providing specialty palliative-care consultations, having a do-not-resuscitate order in place, and death without cardiopulmonary resuscitation. Family meetings should be actively promoted to facilitate appropriate end-of-life-care decisions to avoid unnecessary suffering from potentially inappropriate LSTs during the last days of life.
Siblings of children with serious illness often experience psychosocial distress during and after there sibling's illness. Their psychosocial well-being may not receive adequat focus due to their sibling's illness. This Fast Fact discusses sibling emotions and identify effective ways clinicians can support them. See Fast Fact #47 and #138 for information about the developmental stages for how children conceptualize death and illness.
Objective: Seriously ill adults with multiple chronic conditions (MCC) who receive palliative care may benefit from improved symptom burden, health care utilization and cost, caregiver stress, and quality of life. To guide research involving serious illness and MCC, palliative care can be integrated into a conceptual model to develop future research studies to improve care strategies and outcomes in this population.
Methods: The adapted conceptual model was developed based on a thorough review of the literature, in which current evidence and conceptual models related to serious illness, MCC, and palliative care were appraised. Factors contributing to patients’ needs, services received, and service-related variables were identified. Relevant patient outcomes and evidence gaps are also highlighted.
Results: Fifty-eight articles were synthesized to inform the development of an adapted conceptual model including serious illness, MCC, and palliative care. Concepts were organized into 4 main conceptual groups, including Factors Affecting Needs (sociodemographic and social determinants of health), Factors Affecting Services Received (health system; research, evidence base, dissemination, and health policy; community resources), Service-Related Variables (patient visits, service mix, quality of care, patient information, experience), and Outcomes (symptom burden, quality of life, function, advance care planning, goal-concordant care, utilization, cost, death, site of death, satisfaction).
Discussion: The adapted conceptual model integrates palliative care with serious illness and multiple chronic conditions. The model is intended to guide the development of research studies involving seriously ill adults with MCC and aid researchers in addressing relevant evidence gaps.
Background: At a population level, conversations between clinicians and seriously ill patients exploring patients’ goals and values can drive high-value healthcare, improving patient outcomes and reducing spending.
Methods: We examined the impact of a quality improvement intervention to drive better communication on total medical expenses in a high-risk care management program. We present our analysis of secondary expense outcomes from a prospective implementation trial of the Serious Illness Care Program, which includes clinician training, coaching, tools, and system interventions. We included patients who died between January 2014 and September 2016 who were selected for serious illness conversations, using the “Surprise Question,” as part of implementation of the program in fourteen primary care clinics.
Results: We evaluated 124 patients and observed no differences in total medical expenses between intervention and comparison clinic patients. When comparing patients in intervention clinics who did and did not have conversations, we observed lower average monthly expenses over the last 6 ($6297 vs. $8,876, p = 0.0363) and 3 months ($7263 vs. $11,406, p = 0.0237) of life for patients who had conversations.
Conclusions: Possible savings observed in this study are similar in magnitude to previous studies in advance care planning and specialty palliative care but occur earlier in the disease course and in the context of documented conversations and a comprehensive, interprofessional case management program.
Implications: Programs designed to drive more, earlier, and better serious illness communication hold the potential to reduce costs.
Context: Responding to emotion cues is an essential skill for communicating with patients and families, but many health care trainees have difficulty applying this skill within the context of a complex conversation.
Objectives: We created an original online module to facilitate deliberate practice of a three-skill framework for responding to emotion cues during complex or nonlinear serious illness conversations.
Methods: Our original online module uses a gamebook format, which prompts trainees to engage in focused and repetitive practice of three well-defined skills for responding to emotion cues in a simulated family conference. We implemented the module as a part of a communication skills curriculum for interns rotating in the intensive care unit. After completing the module, all interns answered an open-ended survey question about their perceived skill acquisition. Results were analyzed by a qualitative method and coded into themes.
Results: About 71% of interns (n = 65 of 92) completed the online module and open-ended survey question. About 89% of participants responded that they would use a naming, understanding, respecting, supporting, or exploring statement in response to an emotion cue. Nearly two-thirds of participants articulated their rationale for using naming, understanding, respecting, supporting, or exploring statements (e.g., preparing patients to process complex medical information, eliciting information about patient perspective.)
Conclusion: Our online emotion cue module is a novel tool for deliberate practice of advanced skills for responding to emotion cues in serious illness conversations. In future studies, we will investigate whether our module's efficacy is enhanced by using it as a part of a flipped classroom curriculum with an in-person simulation session.
Elisabeth Kübler-Ross' seminal 1969 work, On Death and Dying, opened the door to understanding individuals' emotional experiences with serious illness and dying. Patient's emotions, however, are only half the story in the patient-physician relationship. In recent years physicians' emotional reactions have gotten more attention. These sometimes-unacknowledged emotions influence how we approach our work, including life and death decisions. This article reviews some of the main emotions physicians experience when caring for seriously ill and dying patients and the challenges physicians face in regulating their emotions in a professional setting. We also discuss some of the ways that physician emotion may influence medical decision-making and contribute to conflict. Attention to the emotional level of physician experience may promote better care.
BACKGROUND: Prior to national spread, the Department of Veterans Affairs implemented a pilot of the life-sustaining treatment decisions initiative (LSTDI) to promote proactive goals of care conversations (GoCC) with seriously ill patients, including policy and practice standards, an electronic documentation template and order set, and implementation support.
AIM: To describe a 2-year pilot of the LSTDI at 4 demonstration sites.
DESIGN: Prospective observational study.
SETTING/PARTICIPANTS: A total of 6664 patients who had at least one GoCC.
RESULTS: Descriptive statistics characterized patient demographics, goals of care, LST decisions, and risk of hospitalization or mortality among patients with at least one GoCC. Participants were on average 71.4 years old, 93.2% male, 87.1% white, and 64.7% urban; 27.3% died by the end of the pilot period. Fifteen percent lacked decision-making capacity (DMC). Nonmutually exclusive goals included to be cured (7.6%), to prolong life (34%), to improve/maintain quality of life (61.5%), to be comfortable (53%), to obtain support for family/caregiver (8.4%), to achieve life goals (2.1%), and other (10.5%). Many GoCCs resulted in a do not resuscitate (DNR) order (58.8%). Patients without DMC were more likely to have comfort-oriented goals (77.3% vs 48.8%) and a DNR (84% vs 52.6%). Chart abstraction supported content validity of GoCC documentation.
CONCLUSION: The pilot demonstrated that standardizing practices for eliciting and documenting GoCCs resulted in customized documentation of goals of care and LST decisions of a large number of seriously ill patients and established the feasibility of spreading standardized practices throughout a large integrated health care system.
The varied physical, social, and psychological stressors that accompany advanced disease can be burdensome and cause intense emotional suffering, hindering the ability of patients and families to cope in day-to-day life and negatively affecting quality of life. This article addresses key concepts for the assessment and management of commonly encountered types of psychological distress in serious illness including grief, prolonged grief, major depressive disorder, death contemplation, and suicidal ideation.
Respiratory symptoms are common in patients living with serious illness, both in cancer and nonmalignant conditions. Common symptoms include dyspnea (breathlessness), cough, malignant pleural effusions, airway secretions, and hemoptysis. Basic management of respiratory symptoms is within the scope of primary palliative care. There are pharmacologic and nonpharmacologic approaches to treating respiratory symptoms. This article provides clinicians with treatment approaches to these burdensome symptoms.
Prognostication is a vital aspect of decision making because it provides patients and families with information to establish realistic and achievable goals of care, is used in determining eligibility for certain benefits, and helps in targeting interventions to those likely to benefit. Prognostication consists of 3 components: clinicians use their clinical judgment or other tools to estimate the probability of an individual developing a particular outcome over a specific period of time; this prognostic estimate is communicated in accordance with the patient's information preferences; the prognostic estimate is interpreted by the patient or surrogate and used in clinical decision making.