eCQ 11-3 Newsletter

Quarterly Newsletter

Volume 11, Issue 3

Palliative Care, Advance Care Planning for ESLD Patients Underutilized and Delayed

• Insufficient training in communication about end-of-life care issues (80%) • The psychological/emotional stress of caring for a dying patient (76%) PATIENT/CAREGIVER BARRIERS TO PC • Cultural factors affecting perception of PC (95%) • Unrealistic expectations about prognosis by patients (93%) and caregivers (90%) • Personal discomfort with PC discussion on the part of both patients (92%) and caregivers (89%) CLINICAL BARRIERS TO PC • Competing demands for clinicians’ time (91%) • Fear of destroying patients’ hope (82%) • Belief that palliative care begins when active therapy ends (81%) or is only for the actively dying (71%) INSTITUTIONAL BARRIERS TO PC • Limited reimbursement for time spent on PC provision (76%) • Insufficient recognition of the impor- tance of PC by colleagues (68%) and institutional leadership (57%) • Lack of palliative care expertise in symp- tom management (67%) • Limited access to PC services (46%) Source: “Barriers to Use of Palliative Care and AdvanceCarePlanningDiscussions for Patientswith End-Stage Liver Disease,” Clinical Gastroenterology and Hepatology; Epub ahead of print, March 15, 2019. DOI: 10.1016/j.cgh.2019.03.022. Ufere NN, Donlan J, El-Jawahri A, et al; Gastrointestinal Unit; and Division of Hematology-Oncology, Department of Medicine, Massachusetts General Hospital, Harvard Medical School, Boston.

Most hepatologists and gastroenter- ologists caring for patients with end-stage liver disease (ESLD) believe that palliative care (PC) is important but underused, and that advance care planning (ACP) conver- sations occur too late. Physicians identified patients’ cultural misperceptions of PC and unrealistic expectations for prognosis, as well as physicians’ time constraints, as major barriers to providing PC, according to a report published in Clinical Gastro- enterology and Hepatology. Investigators assessed responses from a 2018 survey of a national sample of physi- cians (n = 396) providing direct clinical care to adults diagnosed with ESLD, most commonly in the setting of a teaching hospital (79%). Respondents were asked to rate the importance of barriers to PC provision and timely ACP discussion. OVERALL • 86% of physicians believed that patients would benefit from earlier PC. • 81% of respondents thought that ACP discussions occurred “too late,” yet few reported holding an initial ACP discus- sion about resuscitation status at ESLD diagnosis (11%) rather than during acute hospitalization (51%), and even fewer held an initial discussion of hospice at diagnosis (9%) rather than waiting until death was imminent (42%). BARRIERS TO ACP DISCUSSIONS • Inadequate goals-of-care communica- tion between clinicians and patients/ families (84%) • Lack of training in cultural competency regarding end-of-life care (81%)

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CONTENTS

Page 1 Palliative Care, Advance Care Planning for ESLD Patients Underutilized and Delayed Page 2 Physicians Offered Framework, Tools for Improving Dementia Care for Patients and Caregivers Page 3 Access to Hospice Concurrent with Active Cancer Therapy Decreases Aggressive Care, Costs Page 4 Early Palliative Care Urged for Pancreatic Cancer Patients As Death Rates Continue to Rise

Physicians Offered Framework, Tools for Improving Dementia Care for Patients and Caregivers

assessment tools for clinicians, but also relevant online resources addressing the needs of and support for caregivers. DEMENTIA CARE PLAN According to the authors, there are four core elements to a care plan for dementia: 1. Defining and acting on the cognitive problems encountered 2. Managing the neurological, mental, health, behavioral, and functional problems that result from the disease 3. Addressing relevant comorbid conditions 4. Providing caregiver assistance The article also includes a care plan checklist that physicians can use to address immediate threats, such as driving and home safety, as well as long-term issues, such as planning for advance directives, power of attorney, and hospice care. The authors recommend that the care plan be updated yearly, or as disease progression manifests. The downloadable, printable “Dementia Care Plan Checklist” is organized into the sections corresponding to the four core ele- ments. “It’s helpful to have a structured, systematic approach to developing care plans where all these factors are accounted for and revised as needed,” says co-author Natalia Loskutova, MD, PhD, director of evaluation for the American Academy of Family Physicians National Research Network. TIPS FOR PRACTICES How staff can contribute: Some elements on the care plan checklist can be delegated to members of the care team, who could conduct selected tests and surveys, suggest the authors. For instance, clinical staff can telephone family members before an office visit to ask about the patient’s function and cognition. With training, clinical staff could also help counsel patients/ caregivers and connect themwith community resources (such as support groups or financial or legal services) and provide them with educational handouts. Reimbursement: The authors remind family physicians that in 2018 Medicare introduced a billing code for “assessment of and care planning for a patient with cognitive impairment.” The article includes a list of required elements for using this CPT code 99483. “Rethinking what is important in caring for patients with de- mentia and using readily available clinical tools to address those issues allows physicians to render exceptional care not only to the millions of patients affected by these conditions, but also the millions more who care for them,” they conclude. Source: “Tools for Better Dementia Care,” Family Practice Management; January/February 2019; 26(1):11–16. Unwin BK, Loskutova N, Knicely P, Wood CD; Virginia Tech Carilion School of Medicine, Roanoke, Virginia; American Academy of Family Physicians National Research Network, Leawood, Kansas; Carilion Clinic Center for Healthy Aging, Roanoke, Virginia.

Until advances in the diagnosis of and treatment options for dementia become available, family physicians can focus on what can be done to provide patient-centered care for dementia patients and their caregivers, according to a report published in Family Practice Management. The article offers clinicians guidance in creating a dementia care plan through a naviga- tional framework of quality measurements, clinical tools, and educational resources. “An old adage for the care of patients with dementia is to ‘provide safety and structure to the patient, sanity and serenity to the caregiver,’” write the authors. “Many issues of dementia care are out of anyone’s control, so it is important to plan for the known, common problems that develop with this condition.” Lacking a definitive diagnostic test and disease-modifying treatment, physicians may feel they should “stick with what they know” and treat only the dementia patient’s comorbid conditions, note the authors. “For the patients and their caregivers, however, it is dementia’s cognitive, functional, and behavioral losses that most affect their quality of life.” DEMENTIA QUALITY MEASURES The article presents the “Dementia Management QualityMea- surement Set” as a table listing titles and descriptions of nine nationally recognized, evidence-based metrics that can be used to evaluate the current quality of a patient’s care and to identify op- portunities for quality improvement. Quality measures include: • Disclosure of dementia diagnosis • Education and support of caregivers • Functional status assessment • Screening and management of behavioral and psychiatric symptoms • Safety concern screening and follow-up • Driving ability screening and follow-up • Advance care planning and palliative care counseling • Pain assessment and follow-up • Pharmacological treatment of dementia Once the quality of care has been evaluated, the authors sug- gest specific areas needing improvement then be targeted using such established processes as PDSA (Plan, Do, Study, Act). DEMENTIA PRACTICE TOOLS Corresponding to the nine categories of the measurement set is a list of “Dementia Practice Tools” containing the titles of several recommended evidence-based toolkits per domain of care, along with the website address for each. Many of these tools are scorable and can be incorporated into electronic health records, the authors note. Also included in some of these toolboxes are educational materials for caregivers. For example, the domain on pain as- sessment and follow-up contains not only practice guidelines and

Page 2

Volume 11, Issue 3

Access to Hospice Concurrent with Active Cancer Therapy Decreases Aggressive Care, Costs

— i.e., the percentage of deceased lung cancer patients who received hospice care. OVERALL • In the top hospice-exposure quintile, 79%of patients received hospice care; in the bottom quintile, 55% used hospice. • During the six months following diag- nosis, 21.5% of patients were admitted to an ICU and 32% received any form of aggressive medical care (two or more hospital admissions within 30 days, ICU admission, tube feeding, or mechanical ventilation). • Less than half (44.1%) of patients had been hospitalized in the year prior to NSCLC diagnosis. • Those treated in the highest vs the low- est hospice-exposure quintile had lower rates of ICU use (19.3% vs 24.9%) and lower rates of aggressive medical care (28.3% vs 35.5%). KEY FINDINGS • In the six months following diagnosis, patients receiving treatment in the top- quintile facilities were one-third as likely to receive aggressive treatment compared with those treated in the bottom-quintile centers (adjusted odds ratio [AOR], 0.66; 95% confidence interval [CI], 0.53 to 0.81). • Top-quintile patients were 22% less likely to be admitted to an ICU during the six months after diagnosis (AOR, 0.78; 95% CI, 0.62 to 0.99) compared with bottom-quintile patients. • Following entry into hospice, rates of concurrent cancer treatment and che- motherapy or radiation therapy were more than twice as common among those in the highest-quintile facilities compared with those in the lowest (AOR, 2.28; 95% CI, 1.67 to 3.11). • In the last month of life, those treated in the highest-quintile medical centers vs those treated in the lowest had reduced odds of experiencing any form of ag-

A “both/and” program allowing vet- erans with advanced lung cancer access to hospice care while undergoing active disease-modifying treatment — rather than having to give up active treatment, as required by the “either/or” model of the Medicare hospice benefit — was found to lead to less aggressive care and lower costs in the six months following diagnosis, according to a report published in JAMA Oncology. These benefits were observed despite the finding that veterans treated in high hospice-exposure facilities were more than twice as likely to receive chemo- therapy or radiation therapy after initiating hospice services than were those treated in low hospice-exposure centers. The program, the Comprehensive End- of-Life Care Initiative, was launched by the U.S. Department of Veterans Affairs (VA) in 2009 to expand veterans’ access to hospice care by increasing the number of hospice units and trained staff in VA medical centers, as well as partnering with community hospices to provide services, while still allowing participants to receive disease-directed therapies. “We believe that this study offers a health system-level replication of [previ- ous] small randomized clinical trials of early concurrent care that also examined patients diagnosed with late-stage cancer,” write the authors. “As such, our results are very encouraging for those advocating concurrent care to allow for comprehen- sive end-of-life care earlier in the disease course, thereby reducing aggressive care at the end of life.” The investigators conducting the study analyzed VA claims merged with similar Medicare data for 13,085 veterans (male, 98.3%; white, 80.5%; aged < 65 years, 45.5%) newly diagnosed with stage IV non-small cell lung cancer (NSCLC) be- tween 2006 and 2012. The patients were cared for at 113VAmedical centers, which were ranked into quintiles according to each facility’s level of hospice exposure

gressive care (AOR, 0.55; 95%CI, 0.42 to 0.73). • The six-month costs for those in the top-quintile group were $266 per day lower (95% CI, $358 to $164) than for those in the bottom-quintile group. Their findings suggest that concur- rent care — the availability of hospice without having to forgo active treatment — reduces the likelihood of lung cancer patients receiving aggressive end-of-life treatment, while producing a net savings in medical care costs, the authors note. “The substantial reduction in healthcare costs suggests that the investment in hos- pice care that the VA made paid off and probably continues to pay off, without restricting veterans’ access to irradiation and chemotherapy,” they write. “This investment has contributed to high rates of hospice use: over 70% among veterans. Indeed, Medicare-enrolled veterans are more likely to use hospice than are general Medicare beneficiaries. “Whether this finding can be exported to Medicare is unclear, but the prospects are probably better under accountable care organizations or MedicareAdvantage plans than under Medicare fee-for-service care.” The author of an editorial on the study concludes, “Following the lead of [the founder of the first modern hospice, Dame Cicely] Saunders, we continue to study and forge novel care models to im- prove whole-person care for patients with terminal illness.” Source: “Association of Expanded VA Hospice Care with Aggressive Care and Cost for Veterans with Advanced Lung Cancer,” JAMA Oncology; Epub ahead of print, March 28, 2019. DOI: 10.1001/jamaoncol.2019.0081. Mor V, Wagner TH, Shreve S, et al; Center of Innovation in Long-Term Services and Supports, Providence VA Medical Center; and Department of Health Services, Policy & Practice, Brown University School of Public Health, both in Providence, Rhode Island. Health Economics Resource Center, VA Palo Alto Healthcare System, Palo Alto, California; Hospice and Palliative Care Program, U.S. Department of Veterans Affairs; and Penn State College of Medicine, Hershey, Pennsylvania.

Volume 11, Issue 3

Page 3

© 2019 by Quality of Life Publishing Co. May not be reproduced without permission of the publisher. 877-513-0099

Early Palliative Care Urged for Pancreatic Cancer Patients As Death Rates Continue to Rise

express their wishes, concerns, and goals, so these can be understood and addressed. Approximately 56,770 Americans will be diagnosed with pancreatic cancer during 2019, and an estimated 45,750 are projected to die of the dis- ease this year, according to “Cancer Facts &Figures 2019,” a report released in January by the American Cancer Society (ACS). “For all stages combined, the five- year relative survival rate is 9%,” states ACS. This is as compared with a five-year survival rate of 20% for lung cancer, currently the leading cause of cancer death. The ACS report can be found at: www.cancer.org/research/cancer- facts-statistics.html. For more information about pancre- atic cancer, visit www.pancan.org.

Pancreatic cancer, which is one of the most lethal of cancers in the U.S., is projected to be the third leading cause of cancer deaths during 2019. A national advocacy group strongly recommends that patients with this disease receive palliative care (PC) beginning at diagnosis and continuing through and after treatment. “It’s never too early for pancreatic cancer patients and their families to benefit from supportive (palliative) care, which focuses on comfort, quality of life, and a patient’s total well-being,” states the Pancreatic Cancer Action Network (PanCAN), a nonprofit orga- nization providing research funding and patient/caregiver support. MAJOR BENEFITS OF EARLY PC • Symptom relief. Relieving symp- toms and managing side effects can help patients feel better as they face

treatment choices, and may also help prevent future complications. • Well-being. Strengthening physical and emotional well-being can better position patients and families to fight the disease. • Emotional support. Palliative care teammembers can offer suggestions for coping with the range of emo- tions engendered by living with a diagnosis of pancreatic cancer. • Goals of care. Addressing, estab- lishing, and adhering to goals of care is a critical part of PC for serious illness. The focus of these goals “can be any of the following: prolonging life, managing treatment side effects well, and ensuring peace and dignity throughout the cancer journey.” • Open communication. Discussing palliative care with members of the care team can help patients/families

Where care and medical care come together... Mother’s Touch stands for quality and caring service in all aspects of hospice care. We employ tenured leadership and management, with many years of experience in home care nursing, home health, hospice and other forms of care for seniors. Our dedicated interdisciplinary hospice teams provide end-of-life medical, emotional and spiritual care. Our team members have focused their careers to use their extensive knowledge, professional experience, and most importantly, a mission-driven commitment to support our patients and their loved ones. Visit our website or contact us today for more information about hospice or to refer a patient to our hospice services.

www.motherstouchmobilephysicians.com www.motherstouchhospice.com (316) 682-1232 phone (316) 612-9889 fax PO Box 783070 Wichita, KS 67278