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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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“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

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Palliative Care and Hospice:Definitions and Distinctions

Palliative Care and HospiceDefinition 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

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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

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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

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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 CARETRANSITION TO HOSPICE

Curative

Prolongation

of

Life

DIAGNOSIS

Palliative

Relief

of

Suffering

DEATH

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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

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Potential Benefits of Palliative CareUnlike 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

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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

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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

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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

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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

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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

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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 CareRoutine Home Care

Respite Care

General Inpatient Care

Continuous Care

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Routine Home CareCare 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 CareProvided 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

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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

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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

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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

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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 ServicesNursing / 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

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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

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HospiceThe 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 CareThe 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

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“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