Palliative Care Continuum

Carri Siedlik - APRN, ACHPNNurse Practitioner

Advanced Certified Hospice and Palliative NursePalliative Care Program

The Nebraska Medical Center

• Unprecedented number of older Americans with chronic illness

• Technology is prolonging life but not restoring it

• Exploding healthcare costs

• Many uninsured

• Lack of control over rising drug/device costs

• Failure to treat pain and other symptoms

Death and Dying in AmericaDeath and Dying in America

Meier, 2010

View of Advanced Illness and the Care that is Involved

• Frequent emergency room visits

• Increase of in-patient admissions

• Futile care• Promote suffering• Increase risk of depression

and anxiety• Promote complicated

bereavement for family members/caregivers

• Treatments continued near death may prevent/delay hospice services

Greer et al., 2012

• For Healthcare Team: Providing symptom management and discussing emotional aspects of the disease.

• For Patients: Achieving a sense of control, attaining spiritual peace, succeeding in having finances in order, strengthening relationships

with loved ones, believing their life had meaning.

What Constitutes Good Quality Care At the End of Life?

Grant & Dy, 2012; Jacobsen et al., 2011

Administration on Aging, 2010; Kochanek et al., 2011; Minino, et al, 2009

Early 1900s Current

Medicine's Focus Comfort Cure

Cause of Death Infectious DiseasesCommunicable Diseases

Chronic Illnesses

Death rate 1720 per 100,000(1900)

800.8 per 100, 000(2004)

Average LifeExpectancy

50 77.8

Site of Death Home Institutions

Caregiver Family Strangers/Health Care Providers

Disease/DyingTrajectory

Relatively Short Prolonged

Cause of Death Demographic and Social Trends

DeathTime

Hea

lth S

tatu

s< 10% (MI, accident, etc.)

Field & Cassel, 1997

Illness/Dying Trajectories Sudden Death, Unexpected Cause

DeathTime

Hea

lth S

tatu

s

Field & Cassel, 1997

Illness/Dying TrajectoriesSteady Decline, Short Terminal Phase

Illness/Dying TrajectoriesSteady Decline, Short Terminal Phase

Illness/Dying TrajectoriesSlow Decline, Periodic Crises, Death

Illness/Dying TrajectoriesSlow Decline, Periodic Crises, Death

Hea

lth S

tatu

s

Time

CrisesDeath

Decline

Field & Cassel, 1997

• Patients fear they will be a physical and financial burden

• If “nothing more can be done,” will healthcare providers abandon them?

• How do families and caregivers adjust to role changes?

• Many drain life savings and/or go bankrupt to cover medical costs

• Older adults may be cared for by an aged spouse who is also ill

• Older children caring for a parent may also have acute or chronic illness(es)

Toll of Death and Dying on Patients & Families/Caregivers

Egan-City & Labayak, 2010; Given et al., 2012

• Over 44 million adults provide unpaid care to sick/disabled adults

• Average of 21 hours a week

• ~ 33% are elderly• Most are women in

their mid 40’s, working full-time

• 40% of women and 26% of men caregivers report emotional strain

• Cost of uncompensated care = $257 B/year

Overview of Caregivers: Their Commitment and The Cost

Meier, 2010

• US Veterans: 23,442,000• 900 WW II Veterans die a day• Veteran deaths account for almost

28% of all US deaths• Nearly 40% of enrolled Veterans

live in rural communities• 121,000 Veterans are without

shelter or healthcare, hence no access to hospice or palliative care

Casarett 2008, NHPCO, 2011

Remember Patients Who Are Veterans: 96% of all Veterans Die in Non-VA

Facilities

• National Consensus Project (NCP) for Quality Palliative Care: Promotes evidence-based practices to optimize palliative care programs

• National Quality Forum: Developed quantifiable quality indicators

• The Joint Commission: Advanced Certification in Palliative Care

Changes Must Be Made: Development of Standards to Guide Practice

• Structure and processes of care

• Physical aspects of care• Psychosocial/psychiatric

aspects of care• Social aspects of care

• Cultural aspects of care• Spiritual, religious, and

existential aspects of care• Care of the imminently

dying patient• Ethical and legal aspects

of care

NCP, 2013

NCP and NQF: 8 Domains of Palliative Care

• Palliative care compliments national aim to improve quality of care at the local/state/national level– Better Care: Must be patient-

centered, reliable, accessible, safe– Affordable Care: Reduce cost for

individuals, families, employers, government

http://www.healthcare.gov/news/reports/quality03212011a.html

Report to Congress: National Strategy For Quality Improvement in

Healthcare

Barriers to Quality Care at the End of Life

• Failure to acknowledge the limits of medicine• Lack of training for healthcare providers• Hospice/palliative care services are poorly

understood• Rules and regulations• Denial of death

Meir, 2010; NHPCO, 2011

What is Hospice?

• Definition• History• Services included• Statistics

What is Palliative Care?

• Definition• History

Curative Treatment

Palliative Care Hospice

Current Practice of Hospice and Palliative Care

Disease-Modifying Treatment

Hospice Care

Bereavement Support

Palliative Care

Terminal Phase of Illness

Death

Continuum of Care

Hospice Medicare Benefit Eligibility Criteria:

• The patient’s doctor and the hospice medical director use their best clinical judgment to certify that the patient is terminally ill with life expectancy of six months or less, if the disease runs its normal course

• The patient chooses to receive hospice care rather than curative treatments for his/her illness

• The patient enrolls in a Medicare-approved hospice program

http://www.nhpco.org

• Hospice:– Medicare– Medicaid– Most private

health insurers

• Palliative Care:– Philanthropy– Fee-for-service– Direct hospital

support

Payment for Hospice and Palliative Care

Which of the following patients could benefit from palliative care? • A. 64 year-old with congestive heart failure,

hypertension and diabetes• B. 32 year-old with acute myelogenous

leukemia • C. 57-year-old with newly diagnosed

amyotrophic lateral sclerosis• D. 76 year-old with Parkinson’s disease

Stop and Consider

Let’s Practice: A Case Study

• 70 y/o woman with newly diagnosed pancreatic cancer.

• Live alone. Retired school teacher.

• Only Son lives in another state

PhysicalFunctional AbilityStrength/Fatigue

Sleep & RestNauseaAppetite

ConstipationPain

PsychologicalAnxiety

DepressionEnjoyment/Leisure

Pain DistressHappiness

FearCognition/Attention

Quality of Life

SocialFinancial BurdenCaregiver Burden

Roles and RelationshipsAffection/Sexual Function

Appearance

SpiritualHope

SufferingMeaning of Pain

ReligiosityTranscendence

http://prc.coh.org

Quality-of-Life Model

Maintaining Hope in the Midst of Death

• Experiential processes• Spiritual processes• Relational processes• Rational thought processes• Remember the caregiver

Ersek & Cotter, 2010

Tools and Resources for Palliative Care

Assessment Tools• Physical symptoms• Emotional symptoms• Spirituality• Quality of life• Caregivers outcomes

http://prc.coh.org

Prognostication• Consists of 2 parts:

– foreseeing (estimating prognosis) – foretelling (discussing prognosis)

• Performance status

– Karnofsky – ECOG poor predictors, multiple symptoms,

biological markers (e.g. albumin)

– “Would I be surprised if this patient died in the next 6

months?”Hui, 2012

• Kay, a 68-year-old woman with heart failure– Dyspnea at rest– On ACE inhibitors and beta blockers– Ejection fraction (EF) < 20%– Syncope– Resistant ventricular or supraventricular

arrhythmias• Would she qualify for hospice care, given

these symptoms?

Stop and Consider: Prognostication

• Some things cannot be “fixed”

• Use of therapeutic presence

• Maintaining a realistic perspective

Role of the Nurse in Improving Palliative Care

Extending Palliative Care Across Settings

• Nurses as the constant• Expanding the concept of healing• Becoming educated (Certification, HPNA)

Final Thoughts…..

• Quality palliative care addresses quality-of-life concerns

• Increased nursing knowledge is essential

• “Being with”• Importance of interdisciplinary

approach to care

“… touching the dying, the poor, the lonely, and the unwanted

according to the grace we have received, and let us not be ashamed or slow to do the

humble work.”-Mother Teresa

To Comfort Always