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Life is pleasant. Death is peaceful. It’s the transition
that’s troublesome.
The Case forPalliative Care
The Eperc Project
How Americans died in the pastEarly 1900s
average life expectancy 50 yearschildhood mortality highadults lived into their 60s
Prior to antibiotics, people died quicklyinfectious diseaseaccidents
Medicine focused on caring, comfortSick cared for at home
with cultural variations
Medicine’s Shift in FocusMarked shift in values, focus of North American society
“death denying”value productivity, youth, independencedevalue age, family, interdependent caring
Death “the enemy”organizational promisessense of failure if patient not saved
Medicine’s Shift in FocusScience, technology, communicationPotential of medical therapies
fight aggressively against illness, deathprolong life at all cost
Improved sanitation, public health, antibiotics, other new therapiesincreasing life expectancy
2010 avg 78.7 years
We Hope toDie in my sleepDie suddenly
The Reality90% of us will die after a progressive decline from chronic
illness.
Results
More than 70% of Americans say they would prefer to die at home
25% of deaths occur at home
(Robert Wood Johnson Foundation)
From This
To This
The number of people over age 85 will double to 10 million by the year 2030
People living longer with chronic disease.
The 23% of Medicare patients with > 4 chronic conditions account for 68% of all Medicare spending
Aggressive treatment at end of life often leads to a decrease in quality of life for patients and their families
Significant association between increased cost and lower quality of death in the final week of life
The Demographic ImperativeChronically Ill, Aging Population is growing
9000 Patients with life-threatening illness, 50% died within 6 months
Half of patients had moderate-severe pain, >50% in the last 3 days of life.
38% of those who died spent >10 days in ICU, in a coma or on a ventilator
Suffering in U.S. Hospitals- National Data on the Experience of Advanced Illness in 5 Tertiary Care Teaching HospitalsJAMA 1995,274;1591-98
WhyDifficult to discuss“I’ll die in my sleep”Magical thinking “If I talk negatively, it will happen”Seen as “giving up”Family doesn’t want to discussSome would argue that in general we have lost faith in
transcendent lifeAdvance care planning consists mostly of funeral
arrangement
Most people say they want to discuss their values and wishes about end of life care with their physician—and they expect the physician to bring up the topic
Physicians feel patients will have difficulty discussing these sensitive issues
Most people are never asked about their wishes
Only 10-15% of Americans have Advance Directives
Barriers: What Research Says
Intro to Palliative Care"The relief of suffering and the cure of disease must
be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick. Physicians’ failure to understand the nature of suffering can result in medical intervention that (though technically adequate) not only fails to relieve suffering but becomes a source of suffering itself."
The Nature of Suffering and the Goals of Medicine- Eric Cassell
Intro to Palliative CareMedical code of ethics and clinical guidelines explicitly indicate the importance of respecting patients’ rights, goals and values, as well as good communication, advance care planning, and recognizing when continuing treatment is more harmful than beneficial.
Patient and family centered careOptimizes quality of life by anticipating, preventing and
treating sufferingThroughout the course of illnessA holistic approach that includes physical, intellectual,
emotional, social and spiritual needs Facilitates patient autonomy, provides information and
choice
What is Palliative Care
Traditional Care Model
Curative CareHospic
eCare
<------------------Disease Process –-------------
Conceptual shift for Palliative Care – ever increasing presence
of Palliative Care throughout the disease process.
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
Closure – I love you and goodbye
What Do Patients with Serious Illness Want?Singer et al., JAMA 1999,281(2);163-68
Loved one’s wishes honored
Inclusion in decision process
Support/assistance at home
Honest information
Personal care needs met (bathing, etc.)
To be listened to
Privacy
To be remembered after the death
What do Patients and Families Want
Palliative Care Services Provides:Compassionate careManagement of distressing symptomsClarification of treatment optionsImproves communication between patients and
caregiversAssists with establishing advance directivesHelp patients to develop their goals of careTime to listen
Goals of CareFamily discussions to determine patient’s wishes – What is
important to the patient and their familyDetermine setting for careProvide information re: Hospice as appropriateEvaluate support systemsEvaluate spiritual needsProvide information regarding treatment optionsTalk about what happens at the end of lifeAssist patients and families with Advance Directives
Palliative Care Assists With
Symptom Management
PainNauseaConstipationAnxietyShortness of BreathAgitationDepression
Palliative Care Assists With
Palliative Care Assists With
I hope treatments will be explained and I will be included in treatment decisions
I hope my life has meaning
I hope I can still meet some of the goals that are important to me
I hope I can get help with the practical things I need to do before I die
Redefining Hope
Palliative Care Assists With
Healing fractured relationshipsCompleting unfinished businessTaking a tripThe Bucket ListMaintain Dignity
Redefining Healing
Relief of distressing symptomsHelp navigating a complex medical systemUnderstanding the plan of careCoordination and control of care optionsAllowing simultaneous palliation of suffering along with
continued treatmentPractical and emotional support for patients and
exhausted family caregivers
What does all this mean from the patient perspective?
Hope for the best,But make arrangements just in case.
A Jewish Proverb
Hippocratic EthosTo cure occasionally
To relieve oftenTo comfort always
Please join us:http://vote.livestrong.org/vote2012/regions/1/3-harrison-medical-center/
&
Quality of Life ForumHarrison Silverdale
May 21st at 5:30 [email protected] or 744-5618