Jennifer Kapo

Timing of hospice referral and families' perceptions of services : Are earlier hospice referrals better?

Objectives: To determine whether families of patients who enroll in hospice near the end of life believe that they receive less benefit from hospice services than families of patients who enroll earlier.

Advance Care Planning and Hospice Enrollment: Who Really Makes the Decision To Enroll?

PURPOSE The purpose of this study was to assess patient participation in advance care planning (ACP) and the decision to enroll in hospice. METHODS One hundred sixty-five family members of patients who died in hospice between January 2004 and September 2004 returned an anonymous survey (165/380; 43% response rate). RESULTS Forty-nine percent of family members reported that the patient was not involved in the hospice enrollment decision. The majority of respondents (78%) reported one or more people helped make the decision to enroll in hospice. For patients reported as being involved in the decision to enroll in hospice (either independently or in a shared capacity) they were more likely to have cancer (odds ratio [OR] = 2.3, p = 0.02), die at home (OR = 3.3, p = 0.006), have a length of stay in hospice greater than 7 days (OR = 2.1, p = 0.03), and less likely to have dementia (OR = 0.43, p = 0.001). White respondents were more likely to report having ACP discussions with the patient about: feeding tubes (OR = 4.7; p = 0.001), cardiopulmonary resuscitation (CPR; OR = 3.9; p = 0.002), or mechanical ventilation (OR = 2.7; p = 0.02) than non-white respondents. White respondents were more likely than non-white respondents to report that the patient had a written advance directive (OR = 4.2, p = 0.001). DISCUSSION These data indicate that some patients are not actively involved in the decision to enroll in hospice and that others, often physicians and family members, are making these decisions for the patient collaboratively. These data support the need for early education and interventions that assist patients and families in discussing ACP preferences and the need for greater understanding of how involved patients want to be with the decision to enroll in hospice.

Working to Improve Palliative Care Trials

395 IN THIS ISSUE, Dr. Storey describes the significant hurdles his group faced in conducting palliative care clinical trials. He notes, in addition to other barriers, that it is difficult to identify patients who are able to complete research instruments or even to give informed consent. This population, and particularly the hospice population, tends to be frail, with a high prevalence of uncontrolled symptoms and cognitive impairment. As a result, staff members are often reluctant to recruit these patients for research. In addition, there are legitimate concerns about the ability of these patients to give informed consent.1,2 Dr. Storey suggests that one solution may be to shift the focus from patient interviews to interviews of their families and caregivers. During data collection for several recent studies, we too have turned to caregiver interviews as the main source of information. We are gaining increasing experience with this approach, and have begun to realize that methods of family-based data collection pose their own methodological challenges. In addition to well-described concerns about the validity of surrogate reports,3–5 we have had to face several challenges, some of which are unique to methods of surrogate data collection. For instance, data collection from family members tends to complicate the recruitment process. First, it is necessary to determine whether patients or family members should be approached first. In our experience, a single presentation to patient and family is ideal but is difficult to achieve. We generally approach the patient first to determine if he/she can provide consent, but this can lead to friction with a family member who becomes upset when the patient is approached without the family member’s permission. This has been particularly problematic in an ongoing trial of a goals-based decision aid in a nursing home population, where family members tend to be very protective of residents even when residents have full decision-making capacity. If an appropriate recruitment strategy can be developed, it is still necessary to determine who should approach patients and/or their family members. Options include members of the clinical team, the researcher, or a third party not involved in clinical care or research. Although recruitment by a team member preserves privacy, it may also be viewed as being coercive. This is particularly true if the patient or family member relies on that person for care. Alternatively, a caregiver may fear that the patient’s care will be substandard if he refuses to consent. Initial contact by the researcher or his/her representative avoids this concern but may be felt to be intrusive. Recruitment by a third party (e.g., another health care provider or hospice volunteer) avoids these concerns to some degree. However, in our experience it is essential to choose that third party carefully. That person has the capacity to make or break recruitment goals, and to generate enthusiasm or disdain for the study. Another option is to use a research screening questionnaire that identifies patients and/or families who are interested in being approached.6 This is not a substitute for informed consent, but can avoid common Institutional Review Board concerns about direct recruitment by the investigator. It is not yet known, however, whether this strategy increases recruitment efficiency and how it might increase or decrease selection bias. Although recruitment challenges are significant, these challenges are common to studies that involve data collection only from patients. We

Integrating Palliative Care Into the Care of Patients With Advanced Lung Cancer.

AbstractLung cancer is the leading cause of death due to malignancy. Although lung cancer mortality has been decreasing in recent years, it remains substantially higher than other causes of cancer death. Median survival for patients with locally advanced non–small cell lung cancer, defined as lung cancer involving regional lymph nodes, is estimated to be approximately 10 to 17 months, and median survival for patients with metastatic disease is only 6 to 9 months. In addition, patients with advanced lung cancer often experience debilitating symptoms and poor quality of life. Pain, dyspnea, and fatigue are most frequently reported and affect at least 65% of patients with advanced lung cancer. Given this burden of symptoms and high mortality, patients and their families facing a diagnosis of advanced lung cancer are in need of support. Palliative care, with its focus on addressing the emotional, physical, and spiritual sources of suffering utilizing the expertise of an interdisciplinary team, can provide this comprehensive support. This review describes the role of supportive and palliative care integrated into the treatment of patients with a diagnosis of advanced lung cancer with sections focused on the evaluation and treatment of pain and dyspnea, approaches to challenging communication tasks, and the support of caregivers who care for patients with advanced lung cancer.

Palliative Care in Phase 1 Trials: An Ethical Obligation or Undue Inducement?

OF ALL THE TOPICS TO WHICH oncologists, palliative care clinicians and ethicists have devoted their attention, few raise as much heated debate as does the discussion of phase I trials of potential cancer therapies. Commentators point to an array of clinical and ethical challenges, including the low chance of potential benefit, and patients’ overly optimistic expectations of benefit.1,2 It is fair to say that these issues have generally proved to be a strongly divisive force, and one that separates phase 1 investigators from clinicians whose goal is the relief of suffering. This separation is frustrating for many palliative care clinicians, who see phase 1 trials as a series of missed opportunities to provide good end of life care.3 At the heart of this divide, and the source of much of the frustration that it causes, is the assumption that subjects who participate in phase 1 trials must give up quality palliative care. That is, there is a widespread belief that these subjects must forgo a coordinated plan of care that focuses on anticipatory guidance, spiritual and psychological support, and symptom management. In a sense, a large part of the debate about phase 1 trials stems from the assumption that patients must choose between trial participation and palliative care.3 Manish Agrawal and Marion Danis make a clear and convincing case that this dichotomy is false. They argue that it is a dichotomy that makes little sense, either in terms of goals for care, or in terms of good clinical practice. More importantly, they suggest, by clinging to the idea that we must either offer our patients palliative care or participation in phase 1 trials, we are denying them valuable care and doing them a grave disservice. The solution they propose—and it is one that is long overdue—is that the communities of phase 1 investigators and palliative care clinicians should work together to provide quality care to subjects who enroll in phase 1 trials. This solution has a great deal to recommend it, and growing evidence to support its feasibility. For instance, at the National Institutes of Health, Dr. Ann Berger has established a highly successful palliative care consultation service for subjects enrolled in early phase trials. Although not widely emulated yet, her service describes precisely the sort of collaboration that Agrawal and Danis propose. A more aggressive form of collaboration may be feasible as well. A recent nationwide random survey of hospices and phase 1 investigators found that the vast majority of both groups believed that patients should be allowed to enroll in phase 1 trials and hospice simultaneously.4 But this solution raises significant problems as well. Many institutions lack the resources needed to provide comprehensive palliative care, and therefore research protocols may become the institution’s only formal mechanism to provide palliative care services. These research-based palliative care services have the potential to become a “safety net” to meet an institution’s palliative care needs. This development could have two important ethical consequences. First, if good palliative care is only available, or most readily available, to pa-

Critical Care at the End of Life.

Intensive care unit (ICU) admission is common among patients approaching the end of their lives from acute as well as chronic life-limiting conditions. ICU providers are expected to have basic palliative care skills integrated into their routine practice. Palliative care skills can be applied to all ICU patients, regardless of prognosis, and may improve patient- and family-centered end of life (EOL) care in the ICU. Consultative palliative care models may be required for more complex palliative care needs including symptom management, medical decision making, and bereavement. This review discusses integrative and consultative palliative care models and the role of triggers for palliative care consultation, particularly when they are tailored to the needs of individual ICUs. We then review the evidence for providing several palliative care domains in the ICU and some of the ethical considerations surrounding EOL care in the ICU. Finally, we highlight the importance of self-care and peer support groups to mitigate the risk of burnout for clinicians providing EOL care in the ICU.

Carotid Blowout Management #251

tracheostomy tube, insert the obturator (if applicable) into the cannula. Slowly insert the cannula with obturator into the tracheostomy, following the path of the airway. When reinserting, be mindful of any resistance. If there is resistance, it is possible to create a false passage, and one should reevaluate the entry approach. After insertion, remove the obturator while keeping the cannula in place. Listen and feel for air movement through the tracheostomy tube and ensure that there is no subcutaneous emphysema, which may be indicative of improper placement. If you cannot insert a new cannula and the patient cannot breathe comfortably on his or her own through the stoma, use a bag-valve mask to ventilate the patient through the upper airway. Ventilate gently to prevent air from escaping through the stoma or carefully occlude the stoma with a gloved hand to maximize oxygenation. Next steps depend on the patient’s current indication for a tracheostomy (airway patency versus ventilation versus secretion management) and goals of care. If the patient has a patent airway and is not on a ventilator, there may be time to have the patient evaluated by a specialist to replace the cannula. If the patient is ventilator dependent or has an upper airway obstruction, endotracheal intubation and/or emergency transport is indicated. Resuscitation via Tracheostomy Tube. Treat the patient like patients without tracheostomy, with the following exceptions. Do not remove the tracheostomy. Check that the cannula is patent. Ventilate by using a manual resuscitation bag attached directly to the tracheostomy tube. If unable to ventilate, try suctioning. If still unable to ventilate, try to change the tracheostomy tube. The last resort is oral intubation.

Palliative Care in Decompensated Cirrhosis: A Review

Decompensated cirrhosis is an illness that causes tremendous suffering. The incidence of cirrhosis is increasing and rates of liver transplant, the only cure, remain stagnant. Palliative care is focused on improving quality of life for patients with serious illness by addressing advanced care planning, alleviating physical symptoms and providing emotional support to the patient and family. Palliative care is used infrequently in patients with decompensated cirrhosis. The allure of transplant as a potential treatment option for cirrhosis, misperceptions about the role of palliative care and difficulty predicting prognosis in liver disease are potential contributors to the underutilization of palliative care in this patient population. Studies have demonstrated some benefit of palliative care in patients with decompensated cirrhosis but the literature is limited to small observational studies. There is evidence that palliative care consultation in other patient populations lowers hospital costs and ICU utilization and improves symptom control and patient satisfaction. Prospective randomized control trials are needed to investigate the effects of palliative care on traditional‐ and patient‐reported outcomes as well as cost of care in decompensated cirrhosis for transplant eligible and ineligible patient populations.

Penguins and palliative care: facilitating cultural change in the ICU.

Critical Care Medicine www.ccmjournal.org 2443 In his book, Our Iceberg is Melting, Harvard Business School Professor John Kotter tells the story of a colony of penguins faced with a melting iceberg and the need to quickly change their cultural and institutional beliefs to save their home and lives (1). The penguin which first appreciates the danger learns that to facilitate change, it must create a sense of urgency by informing others and engaging a team of key stakeholders who can support the plan at the highest leadership levels. As a result, the penguins decide to leave the iceberg, where previous generations had thrived, to adopt a new nomadic life. Leadership and vision, as well as tremendous support and follow-up, was essential to change their old traditions. Palliative care teams wishing to promote their role in the ICU may benefit from a similar approach. Approximately 20% of Americans die during or immediately after an ICU stay, often with significant suffering (2, 3). ICU use in the last month of life is increasing—29.5% in 2009—and may lead to negative outcomes such as decreased hospice use and shortened hospice length of stay (4). ICU survivors may experience lasting consequences, including impaired functional status (5, 6) and posttraumatic stress disorder (7). More than half of survivors recall episodes of moderate to severe pain during their ICU stay (8). Suffering extends to families: in one study, one third of family members whose loved one died in a medical ICU developed a major psychiatric disorder (9). Palliative care teams—defined as multidisciplinary teams composed of physicians, social workers, chaplains, and nurses with the expertise to address the comprehensive sources of distress, including, physical, psychological, social, and spiritual sufferings—can be key collaborators in efforts to mitigate suffering among patients and families. The field of palliative care has evolved considerably over the past 25 years. Palliative care interventions were previously reserved for the last stage of life in the form of hospice care, but as the field has expanded, its focus has evolved toward integrating palliative care interventions throughout the course of serious illness, even if cure is likely. The stage of disease dictates the type and degree of palliative care intervention. Organizations such as the Center for the Advancement of Palliative Care (CAPC) have recognized the challenge of educating the public, as well as medical providers, to appreciate this broader definition of palliative care. Marketing research techniques have led to promotion of the term extra layer of support to the care being provided for your loved one to highlight the idea that palliative care should be fully integrated with intensive care and not separate from or opposed to potentially life-saving treatment. Despite this evolving understanding of the goals of palliative care, plans to build collaborations between palliative care and ICU teams face challenges. Some ICU teams may be concerned that palliative care consultants may focus on withdrawing life support prematurely or in opposition to the primary team’s plan. Some may not perceive the benefit of consulting palliative care, particularly if ICU teams are confident in their ability to manage distressing symptoms and discuss goals of care. ICU teams may also be concerned about the unintended message families, and patients may perceive if palliative care is consulted (i.e., “we are giving up on you, there is nothing more we can do”). Finally, it may be challenging to identify patients who might benefit most from palliative care involvement. Organizations such as the CAPC and the National Institutes of Health recognize the need to develop cohesive models of integrated palliative and ICU care and have supported programs such as the Improving Palliative Care in the ICU (IPAL-ICU) Program. The mission of IPAL-ICU is “to provide a central venue for sharing expertise, evidence, and tools, along with links to colleagues, organizations, and informational recommended best practices for critically ill patients. Crit Care Med 2007; 35:1696–1702 13. Black MD, Schorr C, Levy MM: Knowledge translation and the multifaceted intervention in the intensive care unit. Crit Care Med 2012; 40:1324–1328 14. Dellinger RP, Levy MM, Rhodes A, et al; Surviving Sepsis Campaign Guidelines Committee including the Pediatric Subgroup: Surviving sepsis campaign: International guidelines for management of severe sepsis and septic shock: 2012. Crit Care Med 2013; 41:580–637

Advance Care Planning in Cognitively Impaired Older Adults: Advance Care Planning in Cognitively Impaired Older Adults

Older adults with cognitive impairment face many healthcare challenges, chief among them participating in medical decision‐making about their own health care. Advance care planning (ACP) is the process whereby individuals communicate their wishes for future care with their clinicians and surrogate decision‐makers while they are still able to do so. ACP has been shown to improve important outcomes for individuals with cognitive impairment, but rates of ACP for these individuals are low because of individual‐, clinician‐, and system‐related factors. Addressing ACP early in the illness trajectory can maximize the chances that people can participate meaningfully. This article recommends best practices for approaching ACP for older adults with cognitive impairment. The importance of providing anticipatory guidance and eliciting values to guide future care to create a shared framework between clinicians, individuals, and surrogate decision‐makers is emphasized. It is recommended that ACP be approached as an iterative process to continue to honor and support peoples wishes as cognitive impairment progresses and increasingly threatens independence and function. The article describes effective strategies for assessing decision‐making capacity, identifying surrogate decision‐makers, and using structured communication tools for ACP. It also provides guidelines for documentation and billing. Finally, special considerations for individuals with advanced dementia are described, including the use of artificial hydration and nutrition, decisions about site of care, and the role of hospice care.