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.
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1 “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 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 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 ($100-160/day)
Prognosis of 6 months or less
Waive rights to curative treatment
Primary care giver – not 24 hour care
4 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 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
Curative Palliative D I A D G Prolongation Relief E N A O of of T S Life Suffering H I S
6 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 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;363:733-42
.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 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 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 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;368:1173-5.
The Hospice Benefit
11 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 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 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 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 of @ $25/hr
Documentation to substantiate need for this level of care & of care provided, must be present
15 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 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 What the Per Diem Rate Covers
RN visits All medications related to terminal diagnosis SW visits DME Spiritual Care Medical and Personal Care HHA supplies PT, OT, Speech, Dietician 24 hr. on-call services Volunteers Inpatient care Bereavement 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 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 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 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 “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
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