Palliative Care and Hospice: Essentials and Fundamentals

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1 Palliative Care and Hospice: Essentials and Fundamentals Timothy E. Quill, MD, FACP, FAAHPM Palliative Care Program; Department of Medicine University of Rochester Medical Center Jacqueline M. Coates, DNP, RN, FNP-C Visiting Nurse Service Hospice and Palliative Care Webster, NY We have no significant conflicts of interest to disclose. 2 1

2 Western Culture Much more diverse than is regularly acknowledged Rugged individualism; personal choice Truth-telling, with an emphasis toward the positive Significant cultural and individual variation Death as an enemy rather than a natural part of the life cycle Families smaller and more spread out Little preventive care, but unlimited catastrophic care Relatively little death talk Culture of Medicine Deification of technology Death as a medical failure, giving up Do not go gently into the night; rage, rage against the light Physicians as patients often accept much less aggressive treatment Limits of medicine vs. limits of your doctor or system Truth telling, but shading toward the positive/hopeful Costs are disconnected from outcomes or social norms 2

3 Palliative Care and Hospice: Definitions and Distinctions Palliative Care and Hospice Definition of Terms Palliative Care: biopsychosocial and spiritual care for seriously ill persons; can be provided alongside any and all medical treatments Goal of Palliative Care: to produce the best possible quality of life for the patient and family, and to help patients make informed medical choices Hospice: Medicare sponsored program dedicated to provide palliative care for terminally ill patients and their families; to receive hospice care, patients must agree to forgo disease-directed treatments 3

4 Elements of Medicare Hospice Benefit Cadillac of home care programs Payment for all medications and medical services Expert team of experienced caregivers Supplementation of care at home or nursing home Option of respite care and emergency inpatient care Elements of Medicare Hospice Benefit Capitated, per-diem reimbursement ($ /day) Prognosis of 6 months or less Waive rights to curative treatment Primary care giver not 24 hour care 4

5 Some Limitations of the Medicare Hospice Benefit Inherent prognostic uncertainty Unavailable to those who want to continue active Rx Primary care giver requirement Cultural, ethnic, socioeconomic barriers Elements of Medicare Hospice Benefit Some hard truths Prognosis of 6 months or less Waive rights to curative treatments 2-4 hours of supplemental care at home not 24 hour care 5

6 Challenges of the Hospice Discussion Hospice requires a bad news discussion Acceptance that medical treatment isn t working Acceptance of likelihood of death in 6 months Giving up on hospitalization and disease-driven treatment Many patients don t want to stop all treatment May be willing to stop burdensome treatment May want to continue to maintain more options Small chances of cure or longer life maintain hope Initially feels a lot like giving up END-0F-LIFE CARE TRANSITION TO HOSPICE D I A G N O S I S Curative Prolongation of Life Palliative Relief of Suffering D E A T H 6

7 Potential Benefits of Palliative Care Improved pain and symptom management Careful attention to quality of life Fresh look at medical goals and priorities Multidisciplinary approach Focus on patient and family 7

8 Potential Benefits of Palliative Care Unlike hospice, palliative care allows for: Simultaneous treatment of underlying disease Acute hospitalization if needed Palliation along side the most aggressive disease treatment Much more prognostic uncertainty Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer. NEJM. 2010;363: RCT of 151 patients with newly diagnoses metastatic non-small cell cancer Standard oncologic care (SOC) alone SOC plus early and ongoing palliative care PC (consult and monthly visits) Measures Health related quality of life (FACT-L) Mood (HADS and PHQ-9) Results patients who received SOC plus PC had significantly Better quality of life (FACT-L 98.0 vs 91.5; p=0.03) Less depression (16% vs 38%; p=0.01) Less aggressive medical care at end of life (33% vs 54%; p=0.05) Longer median survival (11.6 vs 8.9 months; p=0.02 8

9 Palliative Care: When should it be discussed? Absolute requirement Patients who experience difficult to treat symptoms Patients who fear future suffering Patients who face uncertain medical choices Patients who are imminently dying All patients with serious illness? Relieving pain and symptoms Discussing hopes and fears Discussing prognosis Palliative Care: Potential Patient Populations Any diagnosis Compliment to disease-modifying treatment May become the total focus of care Advanced cancer Other serious chronic illnesses CHF, COPD CVA, ALS, advanced Parkinsons, dementia Multisystem failure Any severe illness with an uncertain prognosis 9

10 Palliative Care is Not End of Life Care Many patients seen are cured or have a normal life span Making informed decisions about disease-directed treatments Exploring the full range of treatment options Aggressive treatment with no limits DNR/DNI Other potentially life extending treatment (eg dialysis, VAD ) Hospice Symptom reduction, emotional and spiritual well-being at the same time as desired disease-directed treatments Palliative Care: Hoping and Preparing Lets hope for the best Join in the search for medical options Open exploration of improbable/ experimental Rx Ensure fully informed consent attend to the present Make sure pain and physical symptoms are fully managed Attend to depression and any current psychosocial issues Maximize current quality of life...and prepare for the worst. Make sure affairs (financial/personal) are settled Think about unfinished business Open spiritual and existential issues 10

11 Palliative Care: Who should do it? Primary Palliative Care Basic pain and symptom management Goals of treatment discussion Discussion about resuscitation and invasive treatments Responsibility of all clinicians (primary care and specialty) Specialty palliative care Complex pain and symptom management Conflict around goals of care or treatments Negotiation within families or between treating teams Quill TE, Abernethy AP. Generalist plus specialist palliative care--creating a more sustainable model. New England Journal of Medicine 2013;368: The Hospice Benefit 11

12 The Medicare Hospice Benefit Eligibility Election Benefit Periods Eligibility A prognosis of six months or less if the disease follows its expected course Entitled to Part A of Medicare Election of Medicare Hospice Benefit from a Medicare certified hospice 12

13 What You Need to Know About Eligibility and Election Assessment & documentation for patients with non-cancer diagnosis using NHPCO s Medical Guidelines for determining Prognosis in Selected Non Cancer Diseases How to explain the Medicare Hospice Benefit to patients & caregivers Agreement of patient s attending physician & Hospice Medical Director of prognosis What You Need to Know About Benefit Periods Medicare Benefit Periods- 90d..90d..60d..and 60d ongoing They are the process for assessing continued hospice eligibility & recertification System for tracking recertification dates for each patient Medical Director must sign recertification of patients terminal illness each benefit period 13

14 Recertification Good documentation is essential in demonstrating a patient s continued eligibility Discussions at IDG Evidence of continuing decline in progress notes & in the plan of care Documentation in clinical record must support recertification & patient s eligibility Hospice programs must have a system in place for tracking recertification dates Levels of Care Routine Home Care Respite Care General Inpatient Care Continuous Care 14

15 Routine Home Care Care provided in the patient s place of residence Pt s or family member s own home CCH ALF, SNF Reimbursement is about $100 per day Most commonly billed level of care Continuous Care Provided during times of crisis in attempt to maintain patient at home Hospice must provide a minimum of 8 hrs of care during a 24 hr day beginning at 12:01am & ending at midnight Care need not be continuous- could be 4hrs am & 4hr pm Nursing services (RN or LPN) must comprise more than half of care & must be provided by employees of hospice Reimbursed at rate $25/hr Documentation to substantiate need for this level of care & of care provided, must be present 15

16 Respite Care Designed to provide respite for caregivers Must be provided in a contracted inpatient unit Hospice retains professional management responsibilities Payment (about $97/day) available for a maximum of 5 days at a time including date of admission (not discharge date). This is limited by the number of days not the benefit period. General Inpatient Care Sometimes needed for pain/symptom management which can no longer be managed at home Reimbursement rate is about $450.00/day Treatment must conform to patient s plan of care & hospice retains professional management responsibilities 16

17 What you need to know about Inpatient Care Importance of educating pt/ families on calling hospice before dialing 911 How to determine if a hospitalization is related or unrelated to the terminal illness What hospitals/hospice Inpatient Units hospice contracts with Your responsibilities in managing the patient s care while hospitalized Hospitalization does not mean the same as discharge Payment for Hospice Care Based on a per diem or daily rate according to patient s level of care All services related to terminal illness are included in per diem rate if approved by Interdisciplinary Group 17

18 What the Per Diem Rate Covers RN visits SW visits Spiritual Care HHA PT, OT, Speech, Dietician Volunteers Bereavement Care All medications related to terminal diagnosis DME Medical and Personal Care supplies 24 hr. on-call services Inpatient care Hospice Plan of Care POC tells story of how & how well patient was cared for The POC is a living document that records the care received by the patient. Should provide clear understanding of problems identified, how problems were dealt with & outcomes achieved. POC follows patient from admission through discharge regardless of treatment setting 18

19 Interdisciplinary Group Must include MD, RN, SW and pastoral or other counselor Establishes and updates plan of care RN coordinates the plan of care Core and Other Services Nursing / medical social services Counseling services (bereavement, spiritual, dietary) Bereavement services must include plan of care for caregivers & services provided for one year following patient s death Physical, speech, & occupational therapies Homemaker & home health aide services HHAs must be trained according to federal guidelines Medical supplies, drugs, biologicals and DME 19

20 Central Clinical Records One for each patient It must include entries for all services provided Initial and subsequent assessments Plan of Care Identification data Consents, election forms Medical history Remember If it isn t documented, It isn t done 20

21 Hospice The Bottom Line The premiere program providing palliative care for terminally ill patients and their families Very hard transition for many patients and families Yet most are very appreciative once transition is made More help at home than any other home care program; can also be provided in nursing homes and hospice houses Most patients can find a meaningful and relatively peaceful death on hospice with committed medical partners Palliative Care The Bottom Line Palliative care should be part of the treatment plan for all seriously ill patients Don t wait for it until there is a drastic need! All clinicians who care for seriously ill patients should know how to do basic palliative care Specialist palliative care backup is available to help manage difficult symptoms and more challenging decision-making The challenge is to use medicine s full potential in an individualized way 21

22 You matter because you are. You matter to the last moment of your life and we do all we can, not only to help you die peacefully, but also to live until you die - Dame Cicely Saunders 43 22