Place of death

Preference:

Majority want to die at home

Reality:

Minority will die at home

Most institutional deaths could occur at home

Societal and clinician lack of familiarity with dying

Large Gap Reality vs. Desire

Fears

Die on machine

Die in discomfort

Be a burden

Die in institution

Desires

Die NOT on

ventilator

Die IN comfort

Die WITH family

Die at HOME

Place of death

Our health care system is oriented toward providing

life-sustaining treatment, unless a patient actively

chooses against it.

More interventions and life-sustaining treatments are

associated with poorer patient quality of life and

higher family distress.

Bernacki RE, Block SD, for the American College of Physicians High Value Care Task Force. Communication About Serious

Illness Care Goals: A Review and Synthesis of Best Practices. JAMA Intern Med. 2014;174(12):1994-2003.

Place of death

In the absence of conversations about prognosis, goals,

and outcomes of treatment, patients do not have the

opportunity to express their values and preferences.

Leading clinicians to assume that patients want

additional interventions, even late in the illness.

Bernacki RE, Block SD, for the American College of Physicians High Value Care Task Force. Communication

About Serious Illness Care Goals: A Review and Synthesis of Best Practices. JAMA Intern Med.

2014;174(12):1994-2003.

http://www.youtube.com/watch?v=F6xPBmkrn0g

The relief you need when you are experiencing serious medical illness

PALLIATIVE CARE

Patient

&

Family

Centered Care

Patient Population

Comprehensive Care

Inter-disciplinary

Team

Attention to relief of suffering

TimingQuality

Improve-ment

Communi-cation

Continuity of care across

settings

Equitable Access

Addressing regulatory

barriers

Palliative Components

Palliative Care Team

Clinical Team:

Physician

Nurse Practitioner

Physician Assistant

Nurse

Therapists, Dietician

Pharmacist

Psychosocial Team:

Social Worker

Case Manager

Psychologist

Chaplain

Grief Counselor

Child Life Specialist

Who Uses Palliative Care?

People of all ages…

Life threatening

illness

Limiting injuries

from accidents or

other trauma

Congenital injuries

Dependent on life-sustaining treatments

Serious, life-threatening illness

Progressive chronic conditions

Palliative Care Indications

Uncontrolled

symptoms

Goals of care

Cardiac arrest

Advanced cancer

Multi-organ failure

Ventilation support

Hospice eligibility

Prolonged

hospitalization

Multiple

hospitalizations

Family distress

Reduce physical/emotional symptoms

Improve function and reduce disability

Integrating complimentary therapies

Coordinate with specialists, resources

Assist in making informed decisions

Palliation of suffering along with

continued treatment (no requirement

to give up curative)

What are the goals of Palliative Care?

Pain and symptom control

Avoid inappropriate prolongation of the

dying process

Achieve a sense of control

Relieve burdens on family

Strengthen relationships with loved ones

Singer, et al. JAMA 1999;281(2):163-168.

The Patient’s PerspectiveWhat Do Palliative Care

patients want?

Who is eligible for hospice?

Advanced disease

with life expectancy

of “six months or

less” given natural

course of disease

(may be longer if

patient meets

criteria)

Who is eligible for hospice?

Poor functional/nutritional

status

High morbidity/mortality

markers

Patient/surrogate decision

maker consent

Payment sources

Hospice Care

Physician services

Nursing services

Health aide,

homemaker

services, volunteers

Spiritual support

and social work

Hospice Care

Medical equipment, supplies

Medications

PT/OT, speech therapy, dietary counseling

Bereavement counseling, support services

Where is Hospice?

Home: primary or family

residence, nursing home,

group home, assisted living

facility; mandated to be

>80% of delivered care of

any hospice’s services

Where is Hospice?

Inpatient facility:

Short term, 3-5 days

Continuous care at

home: Highly

regulated, typically

24 hours

Respite care

Hospice Access IssuesCulture, Race

Religious Diversity

Insurance Issues

Geography

Healthcare Staff

Median survival in Hospice care is 2-

3 weeks, primarily due to late

physician referrals

Last Hours of Life

Semicomatose State

Impaired Heart & Renal Function

Respiratory Dysfunction

Neurologic Dysfunction

Semicomatose State

Eyes become

sunken and glazed

Senses are

generally dulled

Hearing may not

be lost, light

sensitivity

Ability to move

decreases

Beginning in the legs

and then the arms

Body becomes stiff,

joints painful if moved

Medicate symptoms

Impaired Heart, Renal Decrease

cardiac output

peripheral and

renal perfusion

blood pressure

Pulse rate first

increases, then

weakens, irregular

Peripheral cooling,

bluish, skin

mottling

May perspire, may

have peripheral

swelling

Body temperature

may increase

Respiratory Dysfunction

Breathing may become

shallow or labored

Respiration rate

fluctuations

Secretions may increase

Breathlessness feeling

may increase

Death “rattle”

Terminal

congestion occurs

due to changes in

respiratory rate and

inability to clear

secretions

Is distressing to

family

Neurologic Dysfunction

Multiple nonreversible factors:

Metabolic imbalances

Acidosis

Kidney failure

Infection

Reduce blood flow to brain

THE “USUAL ROAD”

Decreasing level of consciousness

Sleepy

Lethargic

Semicomatose

Comatose

Death

THE “DIFFICULT ROAD”

Nervous system agitation prior to

semicomatose state

Restlessness, Confusion, Tremors

Hallucinations, Mumbling Delirium

Muscle jerking, Seizures

Semicomatose

Comatose

Death

Large amount of research evidence shows….

Early discussions of serious illness care goals

are associated with:

♛ beneficial outcomes for patients,

♛ no harmful adverse effects, and

♛ potential cost savings.

Bernacki RE, Block SD, for the American College of Physicians High Value Care Task Force. Communication About Serious

Illness Care Goals: A Review and Synthesis of Best Practices. JAMA Intern Med. 2014;174(12):1994-2003.

To die differently you must prevent dying badly…

Bet on Luck or

Take Control

Take Control…

Dreams are only dreams until you write them down. When you write them down then dreams

become goals.

How do YOU take control?

Do ♛ The Conversation Project a collaboration with the Institute for Healthcare Improvement.

http://theconversationproject.org/starter-kit/intro/

Do your conversation kit now and make your loved ones aware of your wishes.