Judith E. Nelson

Effect of Palliative Care–Led Meetings for Families of Patients With Chronic Critical Illness: A Randomized Clinical Trial

IMPORTANCE Family caregivers of patients with chronic critical illness experience significant psychological distress. OBJECTIVE To determine whether family informational and emotional support meetings led by palliative care clinicians improve family anxiety and depression. DESIGN, SETTING, AND PARTICIPANTS A multicenter randomized clinical trial conducted from October 2010 through November 2014 in 4 medical intensive care units (ICUs). Adult patients (aged ≥21 years) requiring 7 days of mechanical ventilation were randomized and their family surrogate decision makers were enrolled in the study. Observers were blinded to group allocation for the measurement of the primary outcomes. INTERVENTIONS At least 2 structured family meetings led by palliative care specialists and provision of an informational brochure (intervention) compared with provision of an informational brochure and routine family meetings conducted by ICU teams (control). There were 130 patients with 184 family surrogate decision makers in the intervention group and 126 patients with 181 family surrogate decision makers in the control group. MAIN OUTCOMES AND MEASURES The primary outcome was Hospital Anxiety and Depression Scale symptom score (HADS; score range, 0 [best] to 42 [worst]; minimal clinically important difference, 1.5) obtained during 3-month follow-up interviews with the surrogate decision makers. Secondary outcomes included posttraumatic stress disorder experienced by the family and measured by the Impact of Events Scale-Revised (IES-R; total score range, 0 [best] to 88 [worst]), discussion of patient preferences, hospital length of stay, and 90-day survival. RESULTS Among 365 family surrogate decision makers (mean age, 51 years; 71% female), 312 completed the study. At 3 months, there was no significant difference in anxiety and depression symptoms between surrogate decision makers in the intervention group and the control group (adjusted mean HADS score, 12.2 vs 11.4, respectively; between-group difference, 0.8 [95% CI, -0.9 to 2.6]; P = .34). Posttraumatic stress disorder symptoms were higher in the intervention group (adjusted mean IES-R score, 25.9) compared with the control group (adjusted mean IES-R score, 21.3) (between-group difference, 4.60 [95% CI, 0.01 to 9.10]; P = .0495). There was no difference between groups regarding the discussion of patient preferences (intervention, 75%; control, 83%; odds ratio, 0.63 [95% CI, 0.34 to 1.16; P = .14]). The median number of hospital days for patients in the intervention vs the control group (19 days vs 23 days, respectively; between-group difference, -4 days [95% CI, -6 to 3 days]; P = .51) and 90-day survival (hazard ratio, 0.95 [95% CI, 0.65 to 1.38], P = .96) were not significantly different. CONCLUSIONS AND RELEVANCE Among families of patients with chronic critical illness, the use of palliative care-led informational and emotional support meetings compared with usual care did not reduce anxiety or depression symptoms and may have increased posttraumatic stress disorder symptoms. These findings do not support routine or mandatory palliative care-led discussion of goals of care for all families of patients with chronic critical illness. TRIAL REGISTRATION clinicaltrials.gov Identifier: NCT01230099.

Integrating Palliative Care into the Care of Neurocritically Ill Patients: A Report from the Improving Palliative Care in the ICU Project Advisory Board and the Center to Advance Palliative Care∗

Objectives:To describe unique features of neurocritical illness that are relevant to provision of high-quality palliative care; to discuss key prognostic aids and their limitations for neurocritical illnesses; to review challenges and strategies for establishing realistic goals of care for patients in the neuro-ICU; and to describe elements of best practice concerning symptom management, limitation of life support, and organ donation for the neurocritically ill. Data Sources:A search of PubMed and MEDLINE was conducted from inception through January 2015 for all English-language articles using the term “palliative care,” “supportive care,” “end-of-life care,” “withdrawal of life-sustaining therapy,” “limitation of life support,” “prognosis,” or “goals of care” together with “neurocritical care,” “neurointensive care,” “neurological,” “stroke,” “subarachnoid hemorrhage,” “intracerebral hemorrhage,” or “brain injury.” Data Extraction and Synthesis:We reviewed the existing literature on delivery of palliative care in the neurointensive care unit setting, focusing on challenges and strategies for establishing realistic and appropriate goals of care, symptom management, organ donation, and other considerations related to use and limitation of life-sustaining therapies for neurocritically ill patients. Based on review of these articles and the experiences of our interdisciplinary/interprofessional expert advisory board, this report was prepared to guide critical care staff, palliative care specialists, and others who practice in this setting. Conclusions:Most neurocritically ill patients and their families face the sudden onset of devastating cognitive and functional changes that challenge clinicians to provide patient-centered palliative care within a complex and often uncertain prognostic environment. Application of palliative care principles concerning symptom relief, goal setting, and family emotional support will provide clinicians a framework to address decision making at a time of crisis that enhances patient/family autonomy and clinician professionalism.

Five patient symptoms that you should evaluate every day

HAL is a multi-disciplinary open access archive for the deposit and dissemination of scientific research documents, whether they are published or not. The documents may come from teaching and research institutions in France or abroad, or from public or private research centers. L’archive ouverte pluridisciplinaire HAL, est destinée au dépôt et à la diffusion de documents scientifiques de niveau recherche, publiés ou non, émanant des établissements d’enseignement et de recherche français ou étrangers, des laboratoires publics ou privés. Five patient symptoms that you should evaluate every day Gérald Chanques, Judith Nelson, Kathleen Puntillo

Recovery after critical illness: putting the puzzle together-a consensus of 29

In this review, we seek to highlight how critical illness and critical care affect longer-term outcomes, to underline the contribution of ICU delirium to cognitive dysfunction several months after ICU discharge, to give new insights into ICU acquired weakness, to emphasize the importance of value-based healthcare, and to delineate the elements of family-centered care. This consensus of 29 also provides a perspective and a research agenda about post-ICU recovery.

Ten key points about ICU palliative care.

Introduction Palliative care is a core component of comprehensive care for patients facing critical illness, regardless of age, diagnosis, or prognosis. Key domains of intensive care unit (ICU) palliative care include relief of distressing symptoms, effective communication about care goals, patient-focused decision-making, caregiver support, and continuity across care settings. In this article, we highlight ten evidence-based principles of palliative care that help support optimal critical care practice.

The Voice of Surrogate Decision-Makers. Family Responses to Prognostic Information in Chronic Critical Illness

Rationale: Information from clinicians about the expected course of the patients illness is relevant and important for decision‐making by surrogates for chronically critically ill patients on mechanical ventilation. Objectives: To observe how surrogates of chronically critically ill patients respond to information about prognosis from palliative care clinicians. Methods: This was a qualitative analysis of a consecutive sample of audio‐recorded meetings from a larger, multisite, randomized trial of structured informational and supportive meetings led by a palliative care physician and nurse practitioner for surrogates of patients in medical intensive care units with chronic critical illness (i.e., adults mechanically ventilated for ≥7 days and expected to remain ventilated and survive for ≥72 h). Measurements and Main Results: A total of 66 audio‐recorded meetings involving 51 intervention group surrogates for 43 patients were analyzed using grounded theory. Six main categories of surrogate responses to prognostic information were identified: (1) receptivity, (2) deflection/rejection, (3) emotion, (4) characterization of patient, (5) consideration of surrogate role, and (6) mobilization of support. Surrogates responded in multiple and even antithetical ways, within and across meetings. Conclusions: Prognostic disclosure by skilled clinician communicators evokes a repertoire of responses from surrogates for the chronically critically ill. Recognition of these response patterns may help all clinicians better communicate their support to patients and families facing chronic critical illness and inform interventions to support surrogate decision‐makers in intensive care units. Clinical trial registered with www.clinicaltrials.gov (NCT 01230099).

To Trach or Not to Trach: Uncertainty in the Care of the Chronically Critically Ill

The number of chronically critically ill patients requiring prolonged mechanical ventilation and receiving a tracheostomy is steadily increasing. Early tracheostomy in patients requiring prolonged mechanical ventilation has been proposed to decrease duration of mechanical ventilation and intensive care unit stay, reduce mortality, and improve patient comfort. However, these benefits have been difficult to demonstrate in clinical trials. So how does one determine the appropriate timing for tracheostomy placement in your patient? Here we review the potential benefits and consequences of tracheostomy, the available evidence for tracheostomy timing, communication surrounding the tracheostomy decision, and a patient-centered approach to tracheostomy. Patients requiring > 10 days of mechanical ventilation who are expected to survive their hospitalization likely benefit from tracheostomy, but protocols involving routine early tracheostomy placement do not improve patient outcomes. However, patients with neurologic injury, provided they have a good prognosis for meaningful recovery, may benefit from early tracheostomy. In chronically critically ill patients with poor prognosis, tracheostomy is unlikely to provide benefit and should only be pursued if it is consistent with the patients values, goals, and preferences. In this setting, communication with patients and surrogates regarding tracheostomy and prognosis becomes paramount. For the foreseeable future, decisions surrounding tracheostomy will remain relevant and challenging.

Palliative care in the ICU of 2050: past is prologue

Past: from defining death to shared decision‐making Three decades ago, we struggled to define death in the face of technology that supported respiratory and cardiovascular function beyond previously imagined boundaries. We had to come to terms with intensive care in relation to the end of life. Initially, a new definition of death, based on brain function, provided a rationale for discontinuing mechanical ventilation and other therapies despite a beating heart and stable hemodynamics [1]. As time went on, we accepted the reality that our own decisions to use, withhold, or withdraw intensive care had life and death consequences. We focused on how those decisions would be made and implemented, seeking a rational and fair process, based on intensive monitoring and sophisticated modeling to predict the patient’s outcome. Palliative care as a field emerged in the 1990s, thrust into national focus by the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (“SUPPORT”) with the aim to improve end-of-life experience for seriously ill patients [2]. The failure of the SUPPORT intervention and, more importantly, the harsh light it shone on the way patients were dying in the ICU and elsewhere, became a call to action. We resolved to relieve the suffering, communicate better with patients and families about goals of care, align treatments more closely with the values and preferences of patients, and limit burdensome therapies. In those early years, the field focused primarily on dying and death. Trigger criteria were created to identify patients at highest mortality risk and engage palliative care specialists [3]. We learned how to “save deaths” as well as save lives—to tell families that their loved ones were approaching the end, maintain comfort while limiting life support, and alleviate our own emotional and moral distress [4–6].

Communication With Family Caregivers in the Intensive Care Unit: Answers and Questions

Shared decision making is increasingly accepted as an optimal model for defining overall goals of care and making major health care decisions affected by the values and preferences of patients.1,2 For patients with advanced illness or who are incapacitated, families and other surrogates are often asked to participate in this collaborative process. Meaningful participation in health care decision making requires that these surrogates have sufficient information to weigh the potential benefits and burdens of treatment, including an understanding of likely outcomes.

One ring to rule them all: education in ICU palliative care

Dear Editor, We read with great interest the article “Ten key points about ICU palliative care” in which the authors highlight ten crucial keys to palliative care in the intensive care unit [1]. The authors present an excellent condensed description and respective recommendations for palliative care on the ICU, which may serve as a guide for daily considerations of end-of-life (EOL) and palliative situations. In the second proposed key point, a mixed model in which primary palliative care is combined with specialist palliative care contributions is recommended. Although we certainly agree that this may be an option, we believe that this aspect needs reflection in the light of several differences between in-ICU care vs. palliative care situations outside of an ICU. In a palliative care setting outside of the ICU, patients and relatives are more likely to have long been confronted, have reflected, and coped with respective EOL situations. When admitted to an ICU, however, both patients and relatives are most often suddenly confronted with critical, life-threatening, and potential EOL situations and, given the abruptness in change of respective life situations, establishing of a link between ICU staff and patients/relatives becomes a key importance. Interestingly, a recent comparison of palliative care specialist-led vs. ICU physician-led family meetings did not influence the incidence of family anxiety and depression [2], which are considered key factors for development of ICU post-traumatic stress disorder (PTSD). We thus believe that when a “mixed model” is applied, an excellent prospective integration of palliative care consultants must then be aimed for. Keeping in mind many respective similarities, there are also very specific challenges to the ICU staff regarding palliative care, which must be focused on adequately. It appears that, first of all, adequate preparedness and EOL training should be provided to all professional ICU staff providing EOL care. Currently, most ICUs do not provide structured EOL training programs for physicians or fellows. This seems optimizable in the light of the fact that even short teaching sessions may improve self-confidence in EOL communication providers [3]. In addition, presence of a trained EOL provider may increase satisfaction of relatives in family meetings [4], and inadequate communication with relatives may result in PTSD and augmented grief [5]. However, whether training beneficially impacts on post-ICU PTSD in next-of-kin remains unclear. In conclusion, we are convinced that the current— mostly “ad hoc”—concept of EOL/palliative care and ICU-specific EOL education deserves revision. Preparedness and empowerment of professional ICU caregivers seem essential in an effort to set up professional EOL care which may, e.g., be guided on the basis of the “ten keys of ICU palliative care”.