A Brief History of Palliative Care David L. Sharp, M.D. Grand Rapids Medical Education Partners Hospice of Michigan – Grand Rapids.

A Brief History A Brief History ofofPalliative CarePalliative Care

David L. Sharp, M.D.David L. Sharp, M.D.Grand Rapids Medical Education Grand Rapids Medical Education PartnersPartnersHospice of Michigan – Grand RapidsHospice of Michigan – Grand Rapids

David L. Sharp, M.D. – brief David L. Sharp, M.D. – brief biobio

B.S./M.D. - University of PittsburghB.S./M.D. - University of Pittsburghpilot program - Family Medicine, Flemington, NJpilot program - Family Medicine, Flemington, NJmoved to Grand Rapids in 1986 when daughter moved to Grand Rapids in 1986 when daughter Martie matriculated at Hope CollegeMartie matriculated at Hope CollegeBoard Certified in Family Medicine and Hospice Board Certified in Family Medicine and Hospice and Palliative Careand Palliative Carespiritual gift: mercyspiritual gift: mercyInpatient Physician – Trillium Woods - 2007-2009Inpatient Physician – Trillium Woods - 2007-2009Medical Director – Hospice of Michigan – Grand Medical Director – Hospice of Michigan – Grand Rapids - 2010 to presentRapids - 2010 to present

our goals today…our goals today…

reach a better understanding of: reach a better understanding of: – how far back “palliative care” reacheshow far back “palliative care” reaches– some historical landmarks along the some historical landmarks along the

wayway– recent history: compassion pushes back recent history: compassion pushes back

against technologyagainst technology– palliative care today – Economics 301palliative care today – Economics 301 - -

the future of palliative carethe future of palliative care

meet the art of Deidre Scherermeet the art of Deidre Scherer

one of the ironies of one of the ironies of life:life:

By the time By the time you’re old you’re old enough to enough to know your know your way around, way around, you’re not you’re not going going anywhere.anywhere.

Palliative Care is not Palliative Care is not exactly a new concept…exactly a new concept…

““Cure sometimes, Cure sometimes, treat often, treat often, comfort always.”comfort always.”

Hippocrates Hippocrates 460-357 B.C.460-357 B.C.

Ancient ChinaAncient China

special houses – “death houses”special houses – “death houses” destitute people were allowed to destitute people were allowed to

go there to live and diego there to live and die

New ZealandNew Zealand

Maoris tribeMaoris tribe family of dead person is given family of dead person is given

support in all possible wayssupport in all possible ways entire tribe joins in mourningentire tribe joins in mourning

East AfricaEast Africa

Tribal elders offer spiritual and Tribal elders offer spiritual and practical support to the dying practical support to the dying person and their familyperson and their family

a rest along the way…a rest along the way…

During the Crusades in the Middle During the Crusades in the Middle Ages, monasteries provided care Ages, monasteries provided care forfor

the sick and dyingthe sick and dying the hungry wayfarerthe hungry wayfarer the woman in laborthe woman in labor the needy poorthe needy poor the orphanthe orphan the leperthe leper

Middle AgesMiddle Ages

Religious orders established Religious orders established “hospices” at key crossroads on the “hospices” at key crossroads on the way to religious shrinesway to religious shrines

Santiago de Compostela (Spain)Santiago de Compostela (Spain) Chartres (France)Chartres (France) Rome (Italy)Rome (Italy) ironically, people died in these ironically, people died in these

shelters while on pilgrimages seeking shelters while on pilgrimages seeking cures for their diseasescures for their diseases

1616thth – 18 – 18thth centuries centuries

religious orders offered care of religious orders offered care of the sick and dying in local or the sick and dying in local or regional institutionsregional institutions

but – most people died at home, but – most people died at home, care for by the women in their care for by the women in their familiesfamilies

1717thth Century Century

A young priest, St. Vincent de A young priest, St. Vincent de Paul, founded the holy order of Paul, founded the holy order of Sisters of Charity in Paris, 1633Sisters of Charity in Paris, 1633

They, in turn, opened more than They, in turn, opened more than 40 houses for the poor, the sick, 40 houses for the poor, the sick, the dyingthe dying

motto: “The charity of Christ motto: “The charity of Christ impels us”impels us”

1800’s1800’s

Madame Garnier of Lyon, France, Madame Garnier of Lyon, France, opened a “calvaire” to care for dyingopened a “calvaire” to care for dying

1879 – Our Lady’s Hospice – Dublin – 1879 – Our Lady’s Hospice – Dublin – cares only for the dyingcares only for the dying

By late 19By late 19thth century, increase in century, increase in municipal or charitably-financed municipal or charitably-financed infirmaries, almshouses and hospitals infirmaries, almshouses and hospitals begins the “medicalizing” of dyingbegins the “medicalizing” of dying

19001900

Five of the Irish Sisters of Charity Five of the Irish Sisters of Charity founded St. Joseph’s Convent, Londonfounded St. Joseph’s Convent, London

Began visiting the sick in their homesBegan visiting the sick in their homes

19351935

Interest grows in the psycho-Interest grows in the psycho-social aspects of dying and social aspects of dying and bereavement, sparked by the bereavement, sparked by the work of Worcester, Bowlby, work of Worcester, Bowlby, Lindemann, Hinton, Kubler-Ross, Lindemann, Hinton, Kubler-Ross, Raphael, Worden and othersRaphael, Worden and others

Europe and USAEurope and USA

Up until 19Up until 19thth century, belief was century, belief was that the family and church should that the family and church should be responsible for the dying be responsible for the dying person and also help loved ones person and also help loved ones cope with situationcope with situation

Mid-20Mid-20thth century century

The expansion of medical The expansion of medical knowledge, fueled by wartime knowledge, fueled by wartime experiences, results in almost experiences, results in almost 80% of people dying in hospitals 80% of people dying in hospitals or a nursing homeor a nursing home

1957 - 19671957 - 1967

Cicely Saunders – first a social Cicely Saunders – first a social worker, then a nurse and finally a worker, then a nurse and finally a physicianphysician

Works at St. Joseph’s Hospice Works at St. Joseph’s Hospice studying pain control in advanced studying pain control in advanced cancer patientscancer patients

Pioneered concept of opioids “given Pioneered concept of opioids “given by the clock” instead of as “prn” pain by the clock” instead of as “prn” pain controlcontrol

Dame Cicely SaundersDame Cicely Saunders 1918-2005 1918-2005

nurse, physician, nurse, physician, founder of St. founder of St. Christopher’s Hospice, Christopher’s Hospice, Sydenham, south Sydenham, south London, 1967London, 1967

““No human life, No human life, now matter how now matter how wretched, wretched, should be should be denied dignity denied dignity and love.”and love.”

Dr. Cicely SaundersDr. Cicely Saunders

““We need to help the dying We need to help the dying to live until they die and to live until they die and their families to live on…”their families to live on…”

Author of three books on hospice care:Author of three books on hospice care:– ““Care of the Dying,” 1960Care of the Dying,” 1960– ““The Management of Terminal Disease,” The Management of Terminal Disease,”

19781978– ““Living with Dying,” 1983Living with Dying,” 1983

19671967

Dr. Saunders opens St. Dr. Saunders opens St. Christopher’s Hospice in LondonChristopher’s Hospice in London

Emphasized multi-disciplinary Emphasized multi-disciplinary approach to caring for dyingapproach to caring for dying

Regular use of opioids Regular use of opioids Careful attention to social, spiritual Careful attention to social, spiritual

and psychological suffering of and psychological suffering of patients and their familiespatients and their families

1974 - New Haven, 1974 - New Haven, ConnecticutConnecticut

Nurses “carry the banner” from Nurses “carry the banner” from London to America and begin London to America and begin teaching Dr. Saunders’ principlesteaching Dr. Saunders’ principles

New Haven Hospice in Branford New Haven Hospice in Branford begins caring for patients with begins caring for patients with cancer, A.L.S. and other fatal cancer, A.L.S. and other fatal illnessesillnesses

Canada -1975Canada -1975

Dr. Balfour Mount – founds Dr. Balfour Mount – founds hospice and palliative care work hospice and palliative care work in two North American hospital in two North American hospital facilitiesfacilities

St. Boniface Hospital - WinnipegSt. Boniface Hospital - Winnipeg Royal Victoria Hospital - MontrealRoyal Victoria Hospital - Montreal

British Columbia - British Columbia - 19781978 Victoria Hospice founded as “The Victoria Hospice founded as “The

Victoria Association for Care of Victoria Association for Care of the Dying”the Dying”

pilot program successful – pilot program successful – became Hospice Victoria 1982became Hospice Victoria 1982

began with 7 acute-care beds in began with 7 acute-care beds in Royal Jubilee HospitalRoyal Jubilee Hospital

1975 - 19781975 - 1978

Hospices and palliative care units Hospices and palliative care units open across USAopen across USA

CaliforniaCalifornia Support team at St. Luke’s in NYCSupport team at St. Luke’s in NYC Church Hospice – BaltimoreChurch Hospice – Baltimore Cleveland ClinicCleveland Clinic Medical College of WisconsinMedical College of Wisconsin

19841984

Congress adds Hospice BenefitCongress adds Hospice Benefit

20092009

Most recent financial data shows:Most recent financial data shows: 11,633 home health agencies11,633 home health agencies 3,533 hospices3,533 hospices

Center for Medicare & Medicaid Services, Center for Medicare & Medicaid Services, OSCAR data, April, 2011OSCAR data, April, 2011

2009 – USA hospice 2009 – USA hospice carecare USA statsUSA stats 1,123,495 covered patients1,123,495 covered patients 77,822,892 covered days of care77,822,892 covered days of care $12 billion reimbursement$12 billion reimbursement

($12,085,785,062.15)($12,085,785,062.15)

Source: CMS OSCAR data, April, 2011Source: CMS OSCAR data, April, 2011

2009 – Michigan 2009 – Michigan

607 home health agencies607 home health agencies 104 hospices104 hospices 41,918 total hospice patients41,918 total hospice patients 2,477,382 covered hospice days2,477,382 covered hospice days $378,947,823.67 hospice $378,947,823.67 hospice

reimbursementreimbursement

CMS OCSAR data, April, 2011CMS OCSAR data, April, 2011

Philosophy before Philosophy before functionfunction Palliative care (symptomatic and Palliative care (symptomatic and

supportive care) is generally supportive care) is generally withheld until all attempts to treat withheld until all attempts to treat the underlying disease and other the underlying disease and other medical problems are exhausted; medical problems are exhausted; many times palliative care is many times palliative care is offered with little time left for offered with little time left for living.living.

Philosophy before Philosophy before function 2function 2 Palliative care should be Palliative care should be

considered in conjunction with considered in conjunction with active treatment, and, as death active treatment, and, as death nears, palliative care becomes nears, palliative care becomes more important as active more important as active treatment, while cure becomes treatment, while cure becomes less importantless important

Philosophy before Philosophy before function 2function 2 Palliative care should be Palliative care should be

considered in conjunction with considered in conjunction with active treatment, and, as death active treatment, and, as death nears, palliative care becomes nears, palliative care becomes more important more important as active as active treatmenttreatment, while cure becomes , while cure becomes less importantless important

Modern definitionModern definition

Advanced knowledge/skills to Advanced knowledge/skills to prevent and relieve suffering prevent and relieve suffering experienced by patients with life-experienced by patients with life-limiting, life-threatening and limiting, life-threatening and terminal illnesses.terminal illnesses.

Expertise in assessment of Expertise in assessment of patients with advanced disease patients with advanced disease and catastrophic injuryand catastrophic injury

Modern definition 2Modern definition 2

Coordination of interdisciplinary Coordination of interdisciplinary patient and family-centered care patient and family-centered care in diverse settingsin diverse settings

Use of specialized care systems Use of specialized care systems including hospice, management including hospice, management of the imminently dying patient of the imminently dying patient and legal and ethical decision and legal and ethical decision making in end-of-life caremaking in end-of-life care

Modern definition 3Modern definition 3

Work with an interdisciplinary Work with an interdisciplinary hospice or palliative care team to hospice or palliative care team to maximize quality of life while maximize quality of life while addressing physical, addressing physical, psychological, social and spiritual psychological, social and spiritual needs of both patients and family needs of both patients and family members thru illness, dying and members thru illness, dying and bereavementbereavement

Drivers of palliative Drivers of palliative carecare Sheer demographics – growth of Sheer demographics – growth of

elder population with diseases of elder population with diseases of senescencesenescence

Conventional medicine – enabling Conventional medicine – enabling younger patients with previously-younger patients with previously-fatal diseases to survive longerfatal diseases to survive longer

Emerging infectious diseases (HIV-Emerging infectious diseases (HIV-AIDS, hep C, resurgent tbc, etc.)AIDS, hep C, resurgent tbc, etc.)

U.S.A. Demographics IU.S.A. Demographics I

over-65 age group will double over-65 age group will double between 2000 and 2030between 2000 and 2030

over 70 million >age 65 by 2030over 70 million >age 65 by 2030 >age 85: 4.2 million in 2000 to 8.9 >age 85: 4.2 million in 2000 to 8.9

million in 2030million in 2030 by 2050 we will may well have by 2050 we will may well have

834,000 persons over 100 years 834,000 persons over 100 years oldold

U.S.A. Demographics IIU.S.A. Demographics II

we post-moderns tend to we post-moderns tend to think of “death” as an think of “death” as an optionoption rather than a rather than a realityreality; however…; however…

roughly 100% of Americans roughly 100% of Americans are expected to die at the are expected to die at the end of their lifetimes.end of their lifetimes.

What is “Futile care?”What is “Futile care?”

use of expensive technology use of expensive technology to to prolong the natural prolong the natural dying processdying process of terminally of terminally ill persons, with no realistic ill persons, with no realistic expectation of longer survival, expectation of longer survival, clinical improvement or better clinical improvement or better quality of lifequality of life

An artist’s rendering An artist’s rendering of “futility…”of “futility…”

Sisyphus, Sisyphus, by Tiziano Vecelli, by Tiziano Vecelli, 1490-15761490-1576

In Greek mythology, In Greek mythology, Sisyphus was Sisyphus was doomed by Zeus to doomed by Zeus to forever carry a huge forever carry a huge rock uphill, only to rock uphill, only to have it roll back have it roll back down again; this down again; this went on day after went on day after day for eternity….day for eternity….

So … “How will we So … “How will we know….?”know….?”

patients are often the first to know patients are often the first to know “when it’s bad news” “when it’s bad news”

a sensing of body language, non-a sensing of body language, non-verbal communication, insight into verbal communication, insight into one’s own body and destinyone’s own body and destiny

innate sense of the timing of lifeinnate sense of the timing of life importance of “the will to live”importance of “the will to live”

““But, how will we But, how will we knowknow….?”….?”

consensusconsensus on on futilityfutility is reached is reached between: between: – the patientthe patient– the family (or best friends as family the family (or best friends as family

surrogate)surrogate)– the spiritual advisor (pastor, priest, the spiritual advisor (pastor, priest,

rabbi, rabbi,

etc.)etc.)– the patient’s personal physicianthe patient’s personal physician

Politics of palliative Politics of palliative carecare Hospitals held accountable for 30-Hospitals held accountable for 30-

day re-admissionsday re-admissions DRG-type “comprehensive” DRG-type “comprehensive”

reimbursement schemesreimbursement schemes Need to reduce ER visits and “un-Need to reduce ER visits and “un-

necessary” hospitalizationsnecessary” hospitalizations Discussions of “futility” – Discussions of “futility” –

mandatory or simply essential?mandatory or simply essential?

Allen Stewart Allen Stewart KonigsbergKonigsberg

1935-????1935-????

Woody Allen:Woody Allen:

““I’m not afraid to I’m not afraid to die. I just don’t die. I just don’t want to be there want to be there when it happens.”when it happens.”

History of Palliative History of Palliative Care:Care:

Your Questions Your Questions Please…Please…

David L. Sharp, M.D.David L. Sharp, M.D.Grand Rapids Medical Education Grand Rapids Medical Education PartnersPartnersHospice of MichiganHospice of Michigan989 Spaulding SE989 Spaulding SEAda, Michigan 49301Ada, Michigan 49301