HOSPICE AND PALLIATIVE CARE

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HOSPICE AND

PALLIATIVE CARE

What, Why, When, and How

Debra Luczkiewicz MD

Attending Physician Hospice Inpatient Unit

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OBJECTIVES

• Define hospice and palliative care.

• Look at hospice and palliative care services provided by Hospice Buffalo.

 Consider Hospice eligibility criteria for different diagnoses.

 Understand goals of care and how they interrelate and change.

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OBJECTIVES

 Look at the 7-step protocol to negotiate goals of care.

 Be able to communicate prognosis and its uncertainty.

 Learn how to make referrals to Hospice and Palliative Care.

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GUIDING PRINCIPLES

Death is an inevitable consequence of having life. No amount of medical progress can change this fact.

A person’s dying days are of just as much value as their non-dying ones.

Care is always focused on the needs and wishes of individual patients.

Royal Hobart Hospital Goals of Care, Limitation of Treatment, and Resuscitation Policy

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TRADITIONALLY

 Physicians focused on curing illness.

 Little attention paid to relief of suffering, care of dying.

 Hospice and palliative care arose in response to a need for specialized care of seriously ill and dying patients.

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PALLIATIVE CARE

Care for patients of any age, at any

stage of advanced and life-threatening

illness, throughout illness, and

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PALLIATIVE CARE

• Comprehensive, coordinated pain and symptom control.

• Care of psychological and spiritual needs.

• Family support.

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DOMAINS OF PALLIATIVE CARE

• Pain management. • Symptom management. • Communication skills • Goals of care. • Advance directives/DNR. • Bad news.

• Ethics & conflict resolution. • Self awareness.

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HOSPICE PROGRAMS

A Hospice program provides palliative care and

supportive services to

terminally ill

patients, their

families and significant others throughout the

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PALLIATIVE CARE: ORIGINAL MODEL

CURATIVE / LIFE PROLONGING CARE

PALLIATIVE CARE

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PALLIATIVE CARE: IMPROVED MODEL

RISK

REDUCING CARE

SYMPTOM TREATMENT AND SUPPORTIVE CARE CURATIVE/LIFE PROLONGING CARE

PALLIATIVE CARE

LIFE CLOSURE CARE IN LAST DAYS BEREAVEMENT ILLNESS ONSET DEATH

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SUPPORTIVE MEDICAL PARTNERS

• Palliative care services throughout Western New York. • Serves patients of all ages with serious illness as well as

frail elderly with advanced progressive illness. • Consultations and coordination of care.

• Patient’s homes, hospitals, long-term care settings or SMP office in Cheektowaga.

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SUPPORTIVE MEDICAL PARTNERS, cont

• Patient-centric model of care with comprehensive collaboration.

• Pain and symptom management.

• Communication to help understand prognosis and care options, define goals of care, and facilitate acceptance of disease progression.

• Practical and emotional support for patients and families. • Assistance with advanced directives.

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HOME CONNECTIONS

• Interdisciplinary palliative case management model. • Works in partnership with patient’s medical team. • For eligible patients with serious progressive illness:

advanced heart or lung disease, cancer, progressive neurological disease, dementia, frequent hospital/ER visits.

• Provides case management, 24 hour phone support, social work services, trained volunteers, with palliative physician oversight.

• Medicare patients enrolled in Blue Cross and Blue Shield or Independent Health eligible.

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REFERRALS TO PALLIATIVE CARE

Home Connections Program

(716) - 989-2475

Supportive Medical Partners

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HOSPICE

Hospice is a concept of care, not a place.

Emphasis on symptom management & quality of

life, not cure.

Focus is on the physical, emotional and spiritual

needs of the patient and family.

Care provided by an interdisciplinary team.

Patients choose palliative approach over curative

or aggressive treatment.

For patients with prognosis of six months or less, if

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LOCATIONS OF CARE

• About 85% of patients are cared for in home settings:

• Patient or family member’s home. • Nursing Home/Assisted Living.

• Group Homes.

• Hospice Inpatient Units.

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HOME HOSPICE SERVICES

Nurse case manager: visits at least once a week, more if needed.

Home health aide: 1-4 hrs/day for personal care.

Chaplain, Social worker: about every other week and as needed.

Physician: Patient’s own primary or Hospice physician

oversees medical care.

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HOME HOSPICE SERVICES, cont

Extended services: PT, OT, speech, massage music therapy, nutrition counseling, etc.

Medical equipment: oxygen, wheelchairs, hospital beds, etc.

Medical supplies: bandages, ostomy or incontinence supplies, etc.

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HOME HOSPICE SERVICES, cont

Acute symptom management: in Hospice Inpatient Units and hospital swing beds.

Respite care: periodically for up to 5 days at a time to provide caregiver break.

Volunteer support: for patients and caregivers. • Bereavement/grief counseling: 13 months for

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ELIGIBILITY FOR HOSPICE

• MD certified prognosis < 6 months if disease pursues its usual course.

• Any terminal diagnosis is appropriate, as is a combination of conditions in the face of ongoing functional and

physical decline.

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THE SURPRISE QUESTION

Would I be surprised if this patient died in

the next six months?

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THE SURPRISE QUESTION

Would I be surprised if this patient died in

the next six months?

If your answer is “no”, a Hospice referral

may be appropriate.

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HOSPICE DIAGNOSES, 2005

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HOSPICE ELIGIBILITY CRITERIA

• Cancer

• Cardiac Disease • Pulmonary Disease • Dementia

• Adult Failure To Thrive • Stroke or Coma

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CANCER

Tissue diagnosis or diagnostic work-up

revealing a mass or multiple lesions consistent

with metastatic disease, or

Progression from earlier stage to metastatic

disease with decline in spite of therapy or

desire for no further treatment of cancer, or

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CARDIAC DISEASE

• Optimally treated with diuretics & vasodilators. • NYHA Class IV, or Class III with comorbidities.

• Class III: Marked limitations of physical activity. Comfortable at rest. Less than ordinary activity causes symptoms.

• Class IV: Inability to carry out any physical activity without discomfort; symptoms present at rest.

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CARDIAC DISEASE, cont

• Other helpful documentation:

• Symptoms of heart failure at rest.

• H/O supraventricular or ventricular arrhythmias resistant to therapy.

• H/O cardiac arrest and resuscitation.

• Persistent elevation BNP.

• Multiple hospitalizations.

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PULMONARY DISEASE

Disabling dyspnea at rest, poorly or unresponsive

to bronchodilators

• FEV1 <30% predicted helpful.

and documented disease progression

• Increasing ER visits or hospitalizations. • Recurrent pulmonary infections.

and hypoxemia at rest on supplemental O2, or

hypercapnia

• pO2 < 55 mmHg or SaO2 <= 88% or pCo2 >= 50 mmHg.

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PULMONARY DISEASE, cont

• Other helpful indicators:

• Right heart failure/Cor pulmonale.

• Unintentional weight loss.

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DEMENTIA

• Beyond stage 7 FAST score.

Presence of medical complications within past

year:

• Aspiration pneumonia.

• Upper urinary tract infection. • Decubitus ulcers.

• Sepsis.

• Fevers recurrent after antibiotics.

Inability to maintain sufficient PO intake with 10%

weight loss past 6 months or albumin < 2.5.

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FUNCTIONAL ASSESSMENT STAGING (FAST)

6a Unable to dress without assistance. 6b Unable to bathe properly.

6c Unable to manage mechanics of toileting. 6d/6e Urinary/fecal incontinence.

7a Fewer than 6 intelligible words in a day. 7b Single intelligible word in a day.

7c Unable to ambulate without assistance. 7d Cannot sit up without assistance.

7e Loss of ability to smile.

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ADULT FAILURE TO THRIVE

Decline in functional status

• Assistance with at least 2 ADLs.

• Decline in PPS score <70 (decreased ambulation, unable to do work, significant disease).

Decline in nutritional status

• Weight loss >= 10% over 6 months or albumin < 2.5. • Dysphagia causing aspiration or decreased PO intake.

Increasing ER visits, hospitalizations.

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STROKE OR COMA

PPS < 40% (mainly in bed, extensive disease,

inability to work, needing assistance with

self-care).

Inability to maintain hydration and caloric intake

with one or more of:

• Weight loss >10% past 6 months or >7.5% past 3 months.

• Albumin < 2.5.

• H/O aspiration not responsive to speech therapy.

• Sequential calorie counts showing inadequate intake. • Dysphagia preventing intake sufficient to sustain life.

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REFERRALS TO HOSPICE

• Chart order in any hospital.

• Call to main number:

686-8000.

• Anyone can make a referral:

• Physician

• Other medical staff

• Patient

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TALKING TO PATIENTS

As a close friend of mine once said, One of the

scariest things in the world is to look someone in the eye and tell them they are dying.

But in my practice I do try to tell patients they are dying because I believe in my heart that it is worse when clinicians don’t.

Pauline Chen MD, Talking Frankly at the End of Life. NY Times, May 28, 2009.

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END-OF-LIFE WISHES

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WHAT PATIENTS WANT

Control of pain and symptoms.

To avoid inappropriate prolongation of the dying

process.

A sense of control.

To relieve burdens on family.

Strengthened relationships with loved ones.

Accurate and sensitive prognostication.

Non-abandonment.

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WHAT CAREGIVERS WANT

 Loved one’s wishes honored.  Inclusion in decision processes.

 Support/assistance at home.

 Practical help (transportation, meds, equipment).

 Help with personal care needs (bathing, feeding, toileting).

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WHAT CAREGIVERS WANT

Honest information.

24/7 access.

To be listened to.

To be remembered and contacted after

the death.

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FAMILY (DIS)SATISFACTION WITH HOSPITALS

82% Uncertain which MD is in charge.

72% Not enough contact with MD.

51% Not enough emotional support for the

patient.

50% Not enough information about what to

expect with the dying process.

38% Not enough emotional support for the family.

19% Not enough help with pain/SOB.

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QUESTIONS TO HELP DEFINE GOALS OF CARE

• What are you expecting?

• What do you most want to accomplish? • What are you hoping for?

• What do you think will happen? • What are you afraid will happen?

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POTENTIAL GOALS OF CARE

 Cure of disease.

 Avoidance of premature death.

 Maintenance or improvement in function.

 Prolongation of life.

 Relief of suffering.

 Quality of life.

 Staying in control.

 A good death.

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MULTIPLE GOALS OF CARE

 Multiple goals often apply simultaneously.

 Goals are often contradictory.

 Certain goals may take priority over others.

 Goals may change over course of illness

– Change is gradual.

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SEVEN STEP PROTOCOL FOR GOAL SETTING

1. Create the right setting.

2. Determine what the patient and family know. 3. Explore expectations and hopes.

4. Suggest realistic goals. 5. Respond empathically.

6. Make a plan and follow through.

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STEVE JOBS

Almost everything--all external

expectations, all pride, all fear of

embarrassment or failure--these things

just fall away in the face of death,

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COMMUNICATING PROGNOSIS

 Helps patient / family cope, plan.

– Increases access to Hospice, other services.

– Helps patients achieve closure, accomplish goals.

 Many physicians are uncomfortable discussing prognosis and assume someone else has done so.

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THE DIFFICULTY WITH PROGNOSIS

• Doctors are lousy prognosticators.

Physicians overestimate survival in

malignant disease by a factor of 5

Christakis, 2003

The standard deviation for estimating

survival in chronic non-malignant disease

exceeds 2 months

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PROGNOSIS

• Talk in terms of averages

"People with your illness can live for a long or a short time. About

half live for about 3 months. There is a lot variation for the other half.”

“Some find it is best to plan for little time, and hope for more time.”

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PROGNOSIS

• Consider offering a range that encompasses average life expectancy

hours to days

days to weeks

weeks to months

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NEW YORK PALLIATIVE CARE INFORMATION

ACT 2/2011

• Requires attending health care practitioner to offer to provide patients with a terminal illness with information and counseling regarding palliative care and end-of-life options.

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NEW YORK PALLIATIVE CARE INFORMATION

ACT 2/2011, cont

• Information includes:

– Prognosis.

– Range of options appropriate to the patient. – Risks and benefits of various options.

– Patient's "legal rights to comprehensive pain and symptom

management at the end of life”.

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HOPE

 Definition: the feeling that what is wanted will happen.

 False sense of hope may deflect the patient and family from finding final meaning and value, and closing their lives together.

 The true skill is to help patients and families find hope for realistic goals, which may change with time.

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HOPE, cont

• Some physicians find it useful to frame discussions using words like:

– “Everyone hopes to win the lottery, but you shouldn’t plan your life

assuming you are going to win. We need a backup plan.

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OUR ROLES AS PHYSICIANS

• Initiate discussions about prognosis, goals, end-of life-care.

• Encourage patients to complete advanced directives.

• Consider palliative care consults for patients with serious illness.

• Refer to Hospice when appropriate.

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RANDY PAUSCH

To be cliché, death is a part of life and it’s going

to happen to all of us. I have the blessing of

getting a little bit of advance notice and I am

able to optimize my use of time down the home

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References

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