“INS” & “OUTS”

of Hospice & Palliative Care

Presented by:

Catherine Collette, RN, MS; Hospice Director

Sharman H. French, LCSW, ACHP-SW

20% of deaths occur at home – more than 70% of Americans would prefer to die at home

(Robert Wood Johnson Foundation)

Hospice

• Provides support and care for those in the last phases of life-limiting illness

• Recognizes dying as part of the normal process of living

• Affirms life and neither hastens nor postpones death

• Focuses on quality of life for individuals and their family caregivers

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Core Aspects of Hospice

• Patient/family focused

• Interdisciplinary

• Provides a range of services:

• Interdisciplinary case management

• Pharmaceuticals

• Durable medical equipment

• Supplies

• Volunteers

• Grief support

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Additional Services

• Hospices offer additional services, including:

• Hospice residential care (facility)

• Inpatient hospice care

• Palliative care

• Complementary therapies

• Caregiver support

• Bereavement counseling

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Hospice Team Members

• The patient’s personal physician

• Hospice medical director and physicians

• Nurses

• Home health aids

• Social workers

• Clergy and spiritual counselors

• Trained volunteers

• Complementary therapies

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The Hospice Team

• Develops the plan of care

• Manages pain and symptoms

• Attends to the emotional, psychosocial and spiritual aspects of dying and caregiving

• Teaches the family how to provide care

• Advocates for the patient and family

• Provides bereavement care and counseling

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Where Hospice is Provided

• Home

• Nursing Facility

• Assisted Living Facility

• Hospital

• Hospice residence or unit

• Prison, homeless shelter – where ever the person is

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Who Pays?

• Medicare

• Medicaid

• Insurance

• Private pay

• Sometimes a combination of these

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Admission Criteria

• General

• Life-limiting illness, prognosis is 6 months or less if

disease takes normal course

• Live the hospice’s in service area

• Consent to accept services and palliative care philosophy

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What is Palliative Care?

• Treatment that enhances comfort and improves the quality of an individual’s life during the last phase of life

• The expected outcome is relief from distressing symptoms, the easing of pain, and/or enhancing the quality of life

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Curative vs. Palliative Care?

• Treatment that enhances comfort and improves the quality of an individual’s life during the last phase of life

• The expected outcome is relief from distressing symptoms, the easing of pain, and/or enhancing the quality of life

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Palliative Care & Hospice Care

What is the difference?

• By definition, Palliative Care focuses on relieving symptoms that are related to serious, chronic illnesses. It can be used at any stage of illness – not just advanced stages.

• Hospice Care is Palliative care but with the focus on serving and comforting patients and families at the end of their lives or as the illness becomes terminal.

• Both Palliative care and Hospice care use a team approach to focus on quality of life or “comfort care,” including the active management of paint and other symptoms, as well as psychological, social and spiritual issues often experienced with serious illness and at the end of life.

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Palliative Care & Hospice Care

A Comparison

For people at any age and at any stage of illness,

whether that illness is curable, chronic or life-threatening.

If you have a loved one suffering from symptoms of a

disease or disorder, ask your current physician for a

referral for a palliative care consult.

Specific to the Medicare Hospice Benefit to be eligible

for hospice care: patient is eligible for hospice care if: 2

physicians determine patient has 6 months or less to live

if terminal illness runs its normal course. Must be

reassessed for eligibility at regular intervals in order to

meet ongoing coverage criteria; no limit for amount of

time a patience can be on the hospice benefit.

No Time restrictions; Palliative care can be received by

patients at any time, any stage of illness, whether

terminal or not. Should the patient’s serious illness

become terminal with a prognosis of 6 months of less, it

may be appropriate to consider referral to hospice care.

Ask questions to learn more about hospice and what to

expect from hospice services. Although end-of-life care

may be difficult to discuss, it is best for family members

to share their wishes long before it becomes a concern.

Eligibility

Timing

Palliative Hospice

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Palliative Care & Hospice Care

A Comparison

Most insurance companies cover both hospice and

palliative care. Medicare coverage for Palliative home

care can be a challenge; must meet Medicare eligibility

which includes; homebound or confinement to the home.

People with a serious illness may not be homebound as

they try to maintain a quality of life including socialization

outside the home.

For those on Medicare, there is a Medicare Hospice

benefit available for patients whose life expectancy is 6

months or less as determined by their physician.

Medicaid hospice coverage is the same as the Medicare

benefit. Some commercial insurance companies also

offer hospice coverage. If you are unsure of coverage,

contact your insurance company.

It is most common to receive Palliative Care through

your physician’s office, home care services, hospitals or

nursing homes.

In most cases, hospice is provided in the patient’s home.

Hospice care is also provided in freestanding hospice

facilities, hospitals, or nursing homes. The hospice team

provides services whether the patient resides – such as

in an assisted living, group home or nursing home.

Payment

Location

Palliative Hospice

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Palliative Care & Hospice Care

A Comparison

For people at any age and at any stage of illness,

whether that illness is curable, chronic or life-threatening.

If you have a loved one suffering from symptoms of a

disease or disorder, ask your current physician for a

referral for a palliative care consult.

Specific to the Medicare Hospice Benefit to be eligible

for hospice care: patient is eligible for hospice care if: 2

physicians determine patient has 6 months or less to live

if terminal illness runs its normal course. Must be

reassessed for eligibility at regular intervals in order to

meet ongoing coverage criteria; no limit for amount of

time a patience can be on the hospice benefit.

Treatment

Palliative Hospice

Since there are no time limits on when you can receive

palliative care, it acts to fill the gap for patients who want

and need comfort at any stage of any disease, whether

terminal or chronic. In a palliative care program, there is

no expectation that life-prolonging therapies will be

awarded.

It’s important, however, that there may be exceptions.

Some hospice programs provide life-prolonging

treatments, and some palliative care programs

concentrate mostly on end-of-life care. Consult your

physician or care-administrator to determine the best

service for you.

Most hospice programs concentrate on comfort rather

than cure. By electing not to receive extensive life-

prolonging treatment, hospice patients and their families

can concentrate on getting the most out of the time they

have left, without some of the negative side-effects that

life prolonging treatments can have.

Most hospice patients can achieve a level of comfort that

allows them and their families to concentrate on the

emotional and practical issues of dying. The focus of

hospice care is more on the quality not the quantity of

the life remaining.

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It does matter how we face loss as

we grow into maturity and wisdom.

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Communication “What should we talk about?”

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80% of people died

at home

80% of people die

in institutions

Most people were cared for by family Most people are cared for by paid help

Dying lasted for days or weeks Dying lasts for months or years

Leading cause of death was injury and

accident

Leading cause of death is heart

disease.

Then Now

100 Years of Change

Statistics from Stamford University

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Death and the Culture of Medicine

• Until the 1960s, the needs of the dying were ignored in medical institutions

• When Swiss psychiatrist Elizabeth Kubler-Ross started working in a New York City hospital, she asked to see the dying patients and was told there were none.

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• Americans believe that death is optional - British Medical Journal

• Youth Culture

• Importance of appearances

• Devaluation of the elderly

• Denial of Death - belief that it can be postponed almost indefinitely through medical intervention

Mainstream American Culture

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Death Attitudes

• Death Denying

• Death Defying

• Death Accepting

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What we all know about death…

•UNIVERSAL - all living things die

•IRREVERSIBLE - the dead don’t come back to life

•CAUSALITY - something causes death

•NONFUNCTIONALITY - the dead can’t do anything

•PERSONAL - it will happen to me/ is happening to me

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Learning About Death

• Greatest impact is from family of origin

- First experience with death

- Open or hidden

- Children included or excluded

- Rituals encouraged or ignored

- Expressions of grief allowed or denied

• Social Norms

- What our society tells us through institutions, media & art

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“Dying Well”

• Dying Well is different for everyone

• We die “the way we live”.

• Accepting and forgiving ourselves.

• Expressions of love and gratitude to family and friends

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Why is TALKING so Important?

• Conversations before the ‘crisis’ allow time for honest discussion, reflections and planning

• Opportunity to discover important information about yourself and your loved ones

• Most important gift you can give to prepare for end of life.

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IT DOES MATTER THAT WE

RECOGNIZE LOSS AS A NORMAL

AND NATURAL FACT OF LIFE.

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Things That Matter Most

Dr. Ira Byock, a leading authority on end of life care, has identified things that matter most to people at the end of life

• Forgiveness: both the opportunity to forgive and to be forgiven

• Gratitude

• Love

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Why is talking so hard?

• How do you feel about choices and care around the end of life?

• What do you want?

• What are you worried about?

• Who will make your decisions for you if you are unable?

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Interesting to note…

• Many Americans say that they feel comfortable discussing issues relating to death and dying

• Yet…how many of you have had a discussion with your family, a friend your doctor, or a clergy about YOUR end-of-life wishes?

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Conversation Triggers

• Family gatherings

• Death of friend or colleague

• Newspaper & magazine articles

• Movies & books

• Sermons

• TV Talk Shows

• Financial planning

• Medical checkups

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How to Communicate

STEP 1: Introduce the conversation

STEP 2: Explore personal beliefs and values

STEP 3: Define end-of-life wishes

STEP 4: Document wishes/Advance Directives

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STEP 1: Introduce the Conversation

• Timing is everything!

• Private, comfortable place

• Begin with a conversation trigger

• Importance of expressing end-of-life wishes

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STEP 2: Explore Personal Beliefs & Values

• Engage in a conversation about beliefs and

values

Happiness

Challenging Times

Spirituality

Family/Growing Up

Personal Values

Lifetime Legacies

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STEP 3: Explore End-of-Life Wishes

• Beliefs

• How do you want to prepare for death/

• What would help you cope?

• Choices

• Where do you want to spend your last days?

• Who do you want near you?

• What kind of medical care do you want?

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STEP 4: Document Wishes

• Complete your Advance Directives

• Living Will

• Health Care Power of Attorney

• Inform others

• Health care professionals, physician

• Family members, friends, self

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Another Option…

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FIVE WISHES addresses:

1. Which person you want to make health care

decisions for you when you can’t make them

yourself

2. The kind of medical treatment you want or don’t

want

3. How comfortable you want to be

4. How you want people to treat you

5. What you want your loved ones to know

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Being There

Things we can do for the dying person when there is “nothing left

to do”:

• Witness and honor the experience

• When you are with the person, acknowledge to the

significance of what is happening to them. This is the end of

a process that began with birth. Both processes are often

difficult and messy.

• Presence

• Spend one minute with the patient doing nothing but

breathing (about 10 deep breaths)

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Bibliography: Oxford Textbook of Palliative Social Work Edited by Terry Altilio and Shirley Otis-Green Oxford University Press; 2011 Aging and Social Work: The Changing Landscapes Edited by Sharon M. Keigher, Anne Fortune, Stanley L. Witkin NASW Press, Washington, DC; 2000 NHPCO---Caring Connections

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Questions & Comments