Transforming health care globally… through palliative care

www.PalliativeMed.org www.IPCRC.net

Public Health Perspective on Palliative Care: Transforming Healthcare in Sweden

Frank D. Ferris, MD, FAAHPM, FAACEInstitute for Palliative Medicine

at San Diego HospiceUniversity of California San Diego

University of Toronto

Imagine . . .

What do YouWant Your Illness

Experience to be ?

1 2

3 4

Where would you like to receive your care?

1. Acute care2. Long-term care3. Home

Swedish Life Expectancy Age 0

World Bank Data

2009 = 81.4

How many are 50 - 60 ?

Likely to die 2030s – 2040s…

How will you achieve your

goals ?Who will provide

your care ?

Transforming health care…

through palliative care

www.PalliativeMed.org www.IPCRC.net

Objective…A Road Map

to Build Palliative Care ( PC )

Capacity in Sweden…

Success & Challenges…

Mortality as an Indicator of Need( 2008 est., x 1,000 )

All Causes Cancer AIDS• World 55.678 7.56 2.845

Late Presentation

Low Resources

Limited or No Treatment

Palliative Care Service Development Globally(from the International Observatory on End-of-Life Care of Lancaster, UK)

No activity yet identified

Capacity building activity

Localized provision

Approaching integration

Source of Map: Wright et al., J. Pain Sym. Manag. 35:469 (2008)Bar graph created from data in this publication.

1

2

3

4

# C

ount

ries

99 / 144 LMICs have no services

Mortality as an Indicator of Need( 2008 est., x 1,000 )

All Causes Cancer AIDS

• Sweden 91,5 22,1 -- 8 % of all dying, 30% dying of cancer receive

PC

• USA 2.540 586 1442 % receive hospice care ( 2010 )

Many more receive non-hospice palliative

care

Sweden Vital Statistics…20122040Population 9,3 M 10,6 M% 65+ 18,3 % 25,8 %% 80+ 5,5 % 9,4 %Dependency ratio 28,1 44,6Crude death rate 10 12per 100 KDeaths 93 K 127 KDue to cancer 25 K > 32 K

Sweden Vital Statistics

Palliative Care in Sweden 2012

In 2012 • 93 K deaths all causes

> 60 % benefit from PC ≈ 55.800

• > 22.000 K deaths from cancer> 80 % benefit from PC > 18.000

Causes of Death

1. Cardiovascular 39,4 %2. Cancer 26,5 %3. Neurological 3,4 %4. Injuries 3,7 %5. Respiratory 5,8 %

90 % of patients receiving PC have cancer !

Setting of DeathNorth America• 23 % own home• 77 % die in

institutions( Teno et al, 1997 )

2 / 3 in hospitals1 / 3 in nursing

homes

Sweden• 5 – 10 % own home• 40 – 50 % nursing homes

1993 2002 ‘ One Voice ’

2002 National ModelCanadian Hospice

Palliative CareAssociation

• ConsensusCommon languageNorms of practice

• English et Français

Palliative Care…• Prevents & relieves suffering

• Improves quality of living and dying• Any diagnosis

From: Ferris FD, Balfour HM, Bowen K, Farley J, Hardwick M, Lamontagne C, Lundy M, Syme A, West P. A Model to Guide Hospice Palliative Care.

Ottawa, ON: Canadian Hospice Palliative Care Association, 2002.

…Palliative Care…

Presentation Death

Therapies tomodify disease

BereavementCare

6m

End-of-life /Hospice Care

Therapies to relieve suffering and / or

improve quality of life

Palliative Care

...Palliative CareHelp to• Eat well• Sleep well• Maintain function• Minimize stress

Live better Live longer

Needsof Patients / Families

Processof ProvidingCare

“ The Model… …is the most importantdocument in the history

of hospice palliative care in Canada ”

“ The Model is implicit in all hospice palliative care in Canada –

it’s like the hard drive in every computer, invisible but supporting everything. ”

CHPCA Model Impact• Patient / family care

National Health Accord Access to medications for home PC

• EducationPalliumEFPPEC

• Research Canadian Institutes for Health Research

2012‘ One Voice ’

2012 National Guidelines

The Challenge… 2012 - 2040,

how will Sweden applythe Guidelines

to PC funding, skills & services…

Human Rights Watch“ Pain & PC are Human Rights ”

India Kenya Ukraine

Unrelieved Pain is Medical Torture

Call to Action…

How will Sweden• Ensure PC human right

• Include in health policy with funding

- cancer, elders, all diagnoses

WHO proposed:Opioid use

is an indicator of PC capacity…

Global Morphine-Equivalent Opioid Consumption,

Pain Policy Studies Group, Madison, WI

Swedenhas many

medications & opioids for palliative care…

and all medical uses…

> 80 % of global morphine consumed by 7 countries with < 10 % of world’s population. Developing countries

( > 80% of world’s population ), consume < 10 % of global morphine

2. Canada 76.7

1. Austria 177Substitution Therapy

23 Countries > Global Mean

131 Countries < Global Mean

3. USA 74.4

14. Sweden 20

10. Sweden 20

2. Canada 142

1. USA 198

8. Sweden 31.5

5. Sweden 31.5

Call to Action…

How will Sweden increase

per capita opioid use ?

Call to Action…

How will Sweden avoid

medication stock-outs ?

Call to Action…

Train ALL healthcare professionals

to provide palliative care…

For Palliative Medicine ( PM ),Sweden Needs…

Assumption• Each Palliative Medicine specialist

60 % clinical & 40 % teaching300 new patients / year30 year career cycle

Palliative Care

Presentation Death

Therapies tomodify disease

BereavementCare

6m

End-of-life /Hospice Care

Therapies to relieve suffering and / or

improve quality of life

Palliative Care

…For only End of Life Care, Sweden Needs

2012• 93 K deaths60 % benefit from PC• 55.800PM Specialists• Have 68• Need 186

2040• 127 K deaths

• 76.000

• Need 254 new !

PC Skills...

1° Basic Skills

All HealthcareProfessionals

1°Advanced Skills

Cariology,Geriatrics,Oncology,

Etc.

2°Expert skills

Palliative CareConsultants /

Teams

3°Academic

Palliative Care

Educational Interventions…

A stepwise process…

as a Model…

Time ( yr ) 3 5 7 9 11

Sensitization

Courses ( Basic & Advanced )

Visiting Scholars ( Expert Identification )

Fellowships ( Experts )

Leadership ( Leaders )

Scholars in Residence ( Education & Research )

IPM Education

More tomorrow…

Research

Call to Action… Develop new

palliative care knowledge & translate it into practice…

Swedish Registry• Online access• All deaths in Sweden• Quality improvement

Methylnaltrexone Time to Laxation

p < 0.0001

J.Thomas et al. J Clin Oncol 2005; 23: 16S ( Abstract )

New Engl J Med 358 ( 22 ); 2332 May 29, 2008

Innovative Research• Rapid management of depression

MethylphenidateKetamine

• New class of antinausea medication• Effectiveness of educational strategies

In-countryFellowshipLeadership

IPM Research

0

5

10

15

20

25

30

35

# of

Stu

dies

1990

1991

1992

1993

1994

1995

1996

1997

1998

1999

2000

2001

2002

2003

2004

2005

2006

2007

2008

IPM - Open Research Studies by Year1990 - 2008

Complementary

Staff Development

Medical Records

Psychosocial

Medical Intervention

Bereavement

Education

Palliative Care Service Development Globally(from the International Observatory on End-of-Life Care of Lancaster, UK)

No activity yet identified

Capacity building activity

Localized provision

Approaching integration

Source of Map: Wright et al., J. Pain Sym. Manag. 35:469 (2008)Bar graph created from data in this publication.

1

2

3

4

# C

ount

ries

99 / 144 LMICs have no services

Call to Action… Expand PC

services to all patients / families

in Sweden in need…and demonstrate effectiveness…

PC Specialty Services…

San Diego Hospice…• Founded 1977 - Dr. Doris Howell

Community-ownedNot-for-profitAcademic

EducationResearchAdvocacy

• Campus 1991Gift of Joan Kroc

• SDHIPM 2009

Palliative Care in the US

Presentation Death

Therapies tomodify disease

BereavementCare

6m

End-of-lifeCare

Therapies to relieve suffering and / or

improve quality of life

Non-HospicePalliative Care

HospiceCare

…San Diego Hospice…≈ 850 staff ≈ 750 volunteers

Budget ≈ $89 million

< 40 % cancer, > 60 % non-cancer

Hospice CarePrognosis < 6 months

Non-Hospice CareAny time

≈ 4,500 new patients per year

≈ 1,500 new consults per year

Acute Care Home

ER

DAYCARE

Elder Care,Nursing Homes

SpecializedFree-standing PC

UnitsInpatient Unit

Inpatient Unit

ICUs Outpatient Clinic / Office

Other eg, Jails

… San Diego Hospice…• Avg. Census > 1,000 patients / day

Home care 11 branches 500 – 550 / dLong-term care 4 branches 300 – 350 / d3 Acute inpatient units 36 bedsPediatric team 25 – 30 / dAmbulatory outpatient clinicTeam 7 – Px < 7 daysTriage NursesExtended care – nights, weekends

Outcomes… San Diego vs. Los Angeles

San Diego County

Los Angeles County

Use of Hospice Care

70 %( US ≈ 39 % ) 25 %

Cost of Hospice Care

50 % higher than San Diego County

Last 2 yrs of life < $29,000 > $43,000

San Diego County

Use of Hospice Care

70 %( US ≈ 42 % )

Cost of Hospice Care

Last 2 yrs of life < $29,000

PC ‘ Inside ’…Oncology…

Cardiology…Elder care…

Etc….

Building relationships

with hospitals…

San Diego Hospice• 4 hospital-based consult services

each seeing 10 – 20 / day UCSD Cancer Center La JollaUCSD HillcrestScripps Mercy HospitalScripps Chula Vista Hospital

• Ambulatory outpatient clinics• AIDS case management ≈ 120 / d

Building relationships with specialty

associations…

ASCO

ASCO

ASTRO

Public / MediaAwareness

Call to Action…

Increase public & media

awareness & access…

What % ofSwedish

population knows about PC…

PC = Best kept secret…

Are youprepared totalk about the death

of your loved one ?

PC Adds ‘ Days to Life& Life to Days ’

Let’s Campaign PC

Pain = entry point Increase public awareness Create demand for PC Change political will

Opportunitiesfor Sweden ?

What Experience . . .

your patients & families,

your loved ones, and ultimately yourselves

?

“ The standards of practice we createand the people we train

will look after uswhen it’s our turn to receive care… ”

Will Sweden be ready ?

Call to Action in Sweden Policy

Human rightNational policies &

funding Education

1°, 2°, 3° Services

All diagnosesWhenever, wherever

patient / family need care

Palliative care knowledgeTranslate into practice

Public / political awareness & accessLiving, not dyingCampaign to

Create demandPolitical will

Pain = entry point

www.PalliativeMed.org www.IPCRC.net

You must be the change you want to see in the worldGandhi