Beyond Cancer Treatment

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1 Beyond Cancer Treatment Supporting Cancer Survivors Through Palliative Care, Advanced Care Planning and Survivorship Care j Programs Dana Evans, MD Director, Patient Access and Quality Genentech, Inc. Estimated Incidence of New Cancer Cases and Deaths

2 Trends in Age-adjusted Cancer Survival, by Site, Males, Trends in Age-adjusted Cancer Survival, by Site, Females,

3 Trends in 5-year Relative Survival Rates by Race Cancer has Become a Chronic Condition for Many Survivors Particularly difficult issues facing oncology include 1,2 Lack of access to care Fragmented care Overutilization of complex imaging, radiation, and drug treatments Variations in care The evolving role of expensive new diagnostic tests and targeted therapies The need for more appropriate palliative and end of life care References: 1. Levit L, Balogh E, Nass S, Ganz PA, eds. Delivering High Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press; Lopes M. CDMI Rep. 2014;(3):

4 Defining the Terms Palliative care is specialized medical care for people with serious illnesses and is focused on providing patients with relief from symptoms, pain, and stresses of a serious illness in order to improve quality of life for both the patient and family 1 Hospice care is a model for quality, compassionate care for people facing a lifelimiting illness or injury and is focused on caring, not curing, and is a form of palliative care that occurs at the end of life 3 Advance care planning is a process of communication between individuals and their health care agents to understand, reflect on, discuss, and plan for future health care decisions for a time when individuals are not able to make their own health care decisions 2 1 CAPC The Center to Advance Palliative Care. care. Accessed National Hospice and Palliative Care website. care. Accessed International Society of Advance Care Planning and End of Life Care. /acpdefinition.php Accessed Palliative j Care 4

5 Palliative Care and the Cancer Care Continuum In the traditional cancer care model, palliative care is instituted only after life-prolonging or curative treatment is no longer administered 1 However, a paradigm shift has occurred to approaches that integrate disease-directed therapy and palliative care with palliative care given throughout the continuum of cancer care 1-3 References: 1. Lopes M. CDMI Rep. 2014;(3): Glare PA. J Natl Compr Canc Netw. 2013;11(Suppl 1):S3 S9. 3. Levit L, Balogh E, Nass S, Ganz PA, eds. Delivering High Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press; Palliative Care and End of Life Care Earlier discussions about prognosis and end-oflife options 1 - Should occur several times during a person s illness and depends on the type and stage of the cancer - May help to ensure that care at the end of life is more consistent with patients preferences Only 44% of surveyed Californians who lost a loved one in the previous 12 months reported that their loved one s end of life preferences were completely followed by medical providers 2 References: 1. Veroff D et al. Health Aff (Millwood). 2013;32: Smith MD. California HealthCare Foundation Web site. care eol. Accessed September 17,

6 There Are a Number of Advantages to Early Integration of Palliative Care Many patients with invasive cancers who receive palliative care along with cancer treatments tend to enjoy better quality of life and live longer 1,2 Early palliative care intervention can help lower total spending on inpatient health care 3 Palliative care in the outpatient setting has been estimated to significantly increase patient satisfaction, while reducing use of medical services and costs of medical care at the end of life 4 References: 1. Temel JS et al. N Engl J Med. 2010;363: Bakitas M et al. JAMA. 2009;302: Parikh RB et al. N Engl J Med. 2013;369: Brumley R et al. J Am Geriatr Soc. 2007;55: Non-hospice Palliative Care Is Most Often Provided in the Inpatient Hospital Setting The prevalence of palliative care in US hospitals with 50 or more beds increased 157.1% from 2000 to Reference: Center to Advance Palliative Care Web site. growth analysis snapshot 2013.pdf. Accessed September 17,

7 Economic Impact of Inpatient Palliative Care Before Referral In Palliative Care Unit Morrison, R.S., Penrod, J.D., Cassel, B., Caust-Ellenbogen, M., Litke, A., Spragens, L., & Meier, D.E. (2008). Cost savings associated with US hospital palliative care consultation programs. Archives of Internal Medicine, 168 (16), Palliative Care in Settings Outside of Hospitals Is Increasing Palliative care in settings outside the hospital is likely to be a major component of patient-centered medical homes and other care delivery systems 1 Home health care can play a critical role in providing palliative care 2 Triple Aim Goals 4 Oncology medical homes allow community oncologists to work collaboratively with payers on care delivery redesign, including advance care planning, and Triple Aim goals 3 References: 1. Barbour LT et al. Center to Advance Palliative Care Web site. downloads/overview of outpatient palliative care models.pdf. Accessed September 17, Labson MC et al. Cleve Clin J Med. 2013;80(Electronic Suppl 1):eS30 es Fox J. Am J Manag Care. 2013;19:SP5 SP9. 4. Berwick DM et al. Health Aff (Millwood). 2008;27:

8 Oncologists and the Timing of Palliative Care Discussions 2015 Genentech Onccology Trend Report Oncologists section, Illustration, page Communication Methods May Influence Patient Decisions Both hearing and seeing information about end-of-life care options may help patients in an advanced stage of cancer make decisions about goals-of-care preferences Reference: El Jawahri A et al. J Clin Oncol. 2010;28:

9 Barriers Prevent Full Availability of Palliative Care to Patients and Families The Center to Advance Palliative Care notes barriers in three key areas that prevent full availability of palliative care for all patients and families facing serious or life-threatening illness and three key policy initiatives to address those barriers Barrier Workforce Research Access and quality Policy Initiative Invest in a trained palliative care workforce to ensure sufficient numbers of specialists to teach clinicians and provide high quality palliative care for highrisk/complex patients Invest in the research necessary to establish a strong science base for palliative care and to expand its ability to improve both quality and length of life Invest in health care system capacity by requiring delivery of high quality palliative care in hospitals, nursing homes, and community settings through changes in measurement, payment, and accreditation standards Adapted from Table 2, page 17. Reference: Center to Advance Palliative Care Web site. growth analysis snapshot 2013.pdf. Accessed September 17, Domains of Palliative Care 1. Structure and processes of care 2. Physical aspects of care 3. Psychological and psychiatric aspects of care 4. Social aspects of care 5. Spiritual, religious, and existential aspects of care 6. Cultural aspects of care 7. Care of the imminently dying patient 8. Ethical and legal aspects of care National Consensus Project for Quality Palliative Care. Clinical Guidelines for Quality Palliative Care, 3 rd Edition

10 Common Symptoms Related to Cancer Therapy Symptom Overall (%) Last 2 wks (%) Symptom Overall (%) Last 2 wks (%) Fatigue Xerostomia Pain Depression Weakness Constipation Appetite Loss Insomnia Anxiety Dyspnea Weight loss Nausea Teunissen SC, et al. Symptom prevalence in patients with incurable cancer: A systematic review. J Pain Sympt Manage. 2007;34: Psychological Distress in Patients with Cancer Psychological distress is underassessed, undertreated and underdiagnosed 1 The American Cancer Society (2013) estimated that more than 25% of cancer patients undergoing treatment become depressed 2 Only about 5% of patients with cancer obtain psychological help 3 1. Madden J. Clin J Oncol Nurs. 2006;10: American Cancer Society. Accessed NCCN Patient and Caregiver Resources. Accessed

11 Caregiver Burden Mood disorders occur in about one-third of caregivers supporting cancer patients Caregivers have a high rate of illness and impaired quality of life Three-quarters report a negative impact on work 1 High costs of informal caregiving ($1 billion/year in the US in 2001) As many as one-third lose most savings while caring for a relative dying of cancer Hayman JA, et al. J Clin Oncol. 2001;19(13): Hospice j Care 11

12 Palliative Care vs. Hospice Care Palliative Care Hospice Care Focus Reduce suffering Reduce suffering Methods Interdisciplinary care that addresses patient/family s physical, psychosocial, and spiritual needs Interdisciplinary care that addresses patient/family s physical, psychosocial, and spiritual needs Timing Any point after cancer diagnosis End of life (last 6 months under Medicare and most other payers). Eligibility based on this prognosis must be certified by MD Cure-focused or restorative treatments Can be provided Can be provided. However, many treatments are outside a hospice s scope and are not offered, and any treatment that could extend prognosis to >6 months would eliminate eligibility for hospice Reimbursement Standard fee for reimbursable provider services Under Medicare, Medicaid and most commercial plans, per diem fee covers all services provided under hospice program CAPC The Center to Advance Palliative Care. care/. Accessed National Hospice and Palliative Care website. care. Accessed Hospice Is a Critical, Often Underused Component of End-of-Life Care Though hospice is now accessible to most Americans, it is an underutilized or ineffectively used service at the end of life, in spite of its many benefits to patients and their families 1 A report by the National Hospice and Palliative Care Organization offers some hospice statistics 2 References: 1. Tinkering with hospice: the Medicare Care Choices Model. Center for Medicare Advocacy Web site. medicarecarechoices model is it better for hospice/. Accessed September 17, NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization;

13 Impact of Hospice on Quality of Life Reduction in symptom distress 1 Improved outcomes for care-givers 1 High patient and family satisfaction 1 Terminally ill patients may live longer with hospice care than continuing active treatment 2 1 Kelley, AS, et al. Hospice Enrollment Saves Money for Medicare and Improves Care Quality Across a Number of Different Lengths of stay. Health Aff (Milwood). 2013;32: Connor, SR et al. Comparing Hospice and Non hospice Patient Survival Among Patients Who Die Within a Threeyear Window. J Pain Symptom Manage. 2007;33: Hospice Enrollment Reduces Healthcare Costs 13

14 Advance Care j Planning Palliative Care Takes a Team Palliative care teams have the role and credibility to assist patients and their families to manage symptoms, discuss goals of care, and make informed treatment decisions 1 Explicit prognostic information and reassurance about non-abandonment are important to patients at the transition to palliative care 2 References: 1. Greer JA et al. CA Cancer J Clin. 2013;63: van Vliet LM et al. J Clin Oncol. 2013;31:

15 Patient-Centered Cancer Treatment Needs a Plan Patient-centered cancer treatment planning necessitates developing an accurate, wellconceived treatment plan - Uses all available medical information appropriately - Considers the medical, social, and cultural needs and desires of the patient and his or her family A cancer treatment plan can provide a roadmap, even in the final stages of cancer when treatment might be only palliative. Reference: Institute of Medicine. Patient Centered Cancer Treatment Planning: Improving the Quality of Oncology Care: Workshop Summary. Washington, DC: The National Academies Press; Completion of Advance Directives Is an Important Part of a Cancer Care Plan Advance directives specify patients wishes regarding the types of care they want to receive if they are unable to make important decisions for themselves These documents need to be accompanied by a discussion with family members so they know the patient s priorities and preferences Reference: Advanced directives: fact sheet. The National Cancer Institute Web site. directives. Accessed September 17,

16 Obstacles May Hinder Patient-Centered Communication and Shared Decision Making Patient-centered communication and shared decision making in oncology may be hindered by a number of obstacles 1 : - Emotions - Finances - Logistics - Lack of health literacy - Clinician reimbursement - Clinician communication skills and training - Lack of patient informational resources >2.5 times Cancer patients are more likely to go bankrupt than those without cancer 2 15% to 25% Patients with cancer who suffer from depression more than double that of the general population 3 References: 1. Levit L, Balogh E, Nass S, Ganz PA, eds. Delivering High Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press; Ramsey S et al. Health Aff (Millwood). 2014;32: The University of Texas MD Anderson Cancer Center Web site. in cancer patients what youshould know.html. Accessed September 17, Medicare Support for Advance Care Planning As of January 1, 2016 CMS will pay for advance care planning (inpatient or outpatient setting) provided by eligible providers Benefit is one initial 30 min session and separate additional 30 minute sessions as needed CMS Final Rule with Comments CMS 1631 FC: Accessed

17 Hospice and Palliative Care Benefits j Expanding Coverage of Palliative Care and the Hospice Benefit May Increase Patient Access The Medicare hospice benefit requires patients with 6 months or less to live to forego curative therapy 1 Some private health plans have already expanded access to palliative care and/or offered a liberalized hospice benefit to patients with an estimated life expectancy of 12 months or less 2 References: 1. Centers for Medicare and Medicaid Services. Accessed September 17, National Business Group on Health and National Comprehensive Cancer Network. An Employer s Guide to Cancer Treatment & Prevention. Tool 1: Quick Reference Guide & Assessment. Accessed

18 Medicare Hospice Benefit Eligibility requirements Diagnosis of terminal condition (can include such things as Alzheimer s disease) Physician Certification that the patient s life expectancy is 6 months or less Patient completes an election statement agreeing to receive palliative rather than curative services Hospice election can be reversed at any time Hospice benefit is certified by two initial 90-day benefit periods, followed by unlimited 60-day benefit periods. CMS Publication: Medicare Hospice Benefit. accessed Medicare Hospice Benefits Physician services Nursing care Occupational and physical therapy Speech and language pathology services Social worker services Nutritional counseling Hospice aid and homemaker services Durable medical equipment Supplies Prescription drugs Short Inpatient stays for symptom management Respite care Grief Counseling CMS Publication: Medicare Hospice Benefit. accessed

19 Medicare Palliative Care Benefits Palliative care services are allowed as standard medical benefits from eligible providers for conditions requiring symptom management Palliative care is provided by hospice providers under the Medicare Hospice Benefit CMS Publication: Medicare Hospice Benefit. accessed Medicare Care Choices Model A pilot program authorized by the 2010 Affordable Care Act Designed to offer patients eligible for hospice the option to continue curative therapy while receiving hospice benefits Expanded from a planned 30 hospice providers to 140 hospice providers Program started Jan 1, 2016 runs for 5 years CMS Fact Sheet: Medicare Care Choices Model Awards. Fact sheets items/ html. Accessed

20 Commercial Insurance Hospice and Palliative Care Benefits Most commercial payers provide home health hospice benefits A few commercial payers provide limited inpatient hospice benefits Palliative care is covered as a standard benefit provided by eligible providers National Business Group on Health and National Comprehensive Cancer Network. An Employer s Guide to Cancer Treatment & Prevention. Tool 1: Quick Reference Guide & Assessment d bcc648. Accessed Cancer Survivorship j Care 20

21 Issues for Cancer Survivors after Treatment Ends Getting back to good health Recovering nutritional status and weight Managing the long-term effects of treatment Surveillance for recurrence and new cancers Adapting screening recommendations meant for the general population Family and caregiver impact IOM Report: From Cancer Patient to Cancer Survivor: Lost in Transition, Nov Institute of Medicine Recommendations Nearly 14.5 million cancer survivors as of January 1, 2014, estimated to reach almost 19 million in 10 years in the United States 1 Institute of Medicine recommends 2 - Innovations in organizing interdisciplinary teambased care - Care coordination between oncologists and PCPs by clarifying roles and sharing survivorship care plans 64.5% of oncologists reported primary responsibility for survivorship program care References: 1. American Cancer Society. Cancer Treatment & Survivorship Facts & Figures Atlanta, GA: American Cancer Society; Levit LA, Balogh EP, Nass SJ, Ganz PA, eds. Delivering High Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press;

22 Survivorship Care Plans (SCPs) Provided by Oncologists Provision of written/printed SCP (N=200) 2015 Genentech Onccology Trend Report Oncologists section, Figure 6, page 46. Resources Used to Create Survivorship Care Plans (SCPs) ASCO = American Society of Clinical Oncologists; NCCN = National Comprehensive Cancer Network Genentech Onccology Trend Report Oncologists section, Figure 6, page

23 Communication and Patient Care with a Survivorship Care Plan Centers of Excellence Community Oncologists Survivorship Care Plan Primary Care Health Professionals Cancer Survivors 2010 Genentech Confidential Do not copy, distribute or use without prior written consent Beyond Cancer Treatment Supporting Cancer Survivors Through Palliative Care, Advanced Care Planning and Survivorship Care j Programs 23

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