Transcript No Slide Title

Improving Quality of Life for
Persons with Alzheimers
Disease
R. Sean Morrison, MD
Hermann Merkin Professor of Palliative Care
Professor of Geriatrics and Medicine
Vice-Chair for Research
Brookdale Department of Geriatrics
Mount Sinai School of Medicine
New York, NY, USA
The Needs of an Aging Population
Palliative Care: A New Model of
Healthcare
Improving Care for Older Adults with
Dementia
Median Life Expectancy in Years
Modern
Sanitation
Modern
Medicine
Antibiotics
20
00
19
70
19
50
19
00
18
00
BC
10
00
30
,0
0
0
BC
90
80
70
60
50
40
30
20
10
0
Longevity in 2006
• Median age of death is 78 years.
• Among survivors to age 65, median age at
death is 82 years.
• Among survivors to age 80, median age at
death is 88 years
Canada Population Projections
<6565-80
65-80
years>80 >80
years
years
years
30
7
Millions of
of Canadians
Canadians
Millions
6
25
5
20
4
15
3
10
2
5
1
00
2006
2006
2011
2011
2016
2016
2021
2021
2026
2026
2031
2031
Number of Canadian Age 65 and Over with
Disabilities
Low Growth
High Growth
3.5
Millions of
Persons
3
2.5
2
1.5
1
0.5
0
2001
2006
2011
2016
2021
2026
Human Resources and Social Development Canada, 2005, www.hrsdc.gc.ca
Prevalence of Alzheimer’s Disease in
Canadians Over Age 65
Persons with AD
Thousands
800
700
600
500
400
300
200
100
0
2007
2031
Canadian Study on Health & Aging
Leading Causes of Death in the U.S.:
2004
•
•
•
•
•
•
•
Heart disease:
Malignant neoplasm:
Cerebrovascular disease:
Chronic lung disease:
Accidents:
Diabetes:
Alzheimer’s Disease
27%
23%
6%
5%
5%
3%
3%
Account for 77% of all deaths
Natl. Ctr. Health Statistics, CDC, 2007
Alzheimers & Related Dementias
• Affects 30-40% of patients over 85 (50% in
advanced stages)
• Two thirds of newly admitted personal care
residents have a diagnoses dementia
• Currently costs 37,000 per year in caregiver,
nursing home, and medication costs (5.5 billion
dollars per year)
• Projected 750,000 Canadians will suffer from
advanced dementia by 2030
• There is no cure and disease modifying
therapies are only marginally effective
The Burden of Dementia...
• Financial and emotional costs to families and
family caregivers
– >90% have a family caregiver (>70% are women)
– 20-40% of caregivers report depression
– Caregivers reporting strain have a 1.5 fold
increased risk of death
• Decades of progressive dependency
• Loss of work, family network, social supports,
health, and savings.
• Untreated physical symptoms
Undertreatment of Pain in Patients With Advanced
Dementia
• Prospective cohort study of 59 cognitively
intact elderly patients with hip fracture and
38 patients with hip fracture and advanced
dementia
• Daily rating of pain by cognitively intact
patients
• Comparison of analgesic prescribing
practices
Morrison & Siu, JPSM, 2000
Analgesic Prescribing in Hip Fracture
Patients with Advanced Dementia
Pre-op
Post-op
5
Mg MSO4/Day
• 76% of cog. intact
patients rated their
average preoperative pain as
moderate-severe
• 68% of cog. intact
patients rated their
average postoperative pain as
moderate to severe
4
3
2
1
0
Cog Intact
Dementia
Morrison & Siu, JPSM, 2000
Analgesic Dosing Schedules For Cognitively Intact
and Dementia Patients
100
90
80
70
% Of
60
Analgesics
50
Ordered as
40
"As Needed"
30
20
10
0
Dementia
Cognitively Intact
Morrison & Siu, JPSM, 2000
Cognitive Impairment & Pain
Management: Nursing Homes
• Pain is documented less frequently for CI
residents, even with similar numbers of painful
diagnoses as less impaired residents (Sengstaken &
King, 1993)
• Less analgesic is prescribed/administered for CI
residents, despite similar numbers of painful
diagnoses (Horgas & Tsai, 1998)
• Approximately ¼ of demented residents who
were identified as having pain were receiving
any analgesic therapy (Scherder et al, 1999; Bernabei et
al, 1998; Won et al, 1999)
Sources of Suffering in Dementia Pneumonia
• 39 cognitively intact subjects asked to rate symptoms
associated with pneumonia
–
–
–
–
Over 50% experienced at least one episode of severe dyspnea
50% experienced moderate to severe anxiety
40% experienced moderate to severe pain from coughing
20% experienced severe nausea
• Of 80 dementia patients hospitalized with pneumonia, 0
received treatment directed at any of the symptoms
listed above
Morrison & Siu, 2000
Sources of Suffering in Dementia –
Iatrogenic Interventions
• 165 cognitively intact adults hospitalized with
acute medical illness
• Subjects asked to rate pain and discomfort
associated with common hospital procedures
received by end-stage dementia patients
• Ratings on a 0-10 cm visual analog scale
Morrison et al, JPSM 1998
Pain Ratings For 16 Common Hospital
Procedures For 165 Subjects
• Severe (8-10)
• Mild (1-3)
• Arterial blood gas
• IM/SC injection Urethral
catheter
• Mechanical restraints
• Movement from bed to chair
• Moderate (4-7)
•
•
•
•
Central line placement
Nasogastric tube
Peripheral IV insertion
Phlebotomy
• None (0)
• IV catheter
• Chest x-ray
• Vitals signs
• Transfer to a procedure
• Waiting for a test or procedure
• PO medications
Morrison et al, JPSM 1998
Discomfort Ratings For 16 Common Hospital
Procedures For 165 Subjects
• Severe (8-10)
• Mild (1-3)
•
•
•
•
•
•
•
•
•
•
•
Nasogastric tube
Mechanical ventilation
Mechanical restraints
Central line placement
• Moderate (4-7)
• Arterial blood gas
• Urethral catheter
IV insertion
Phlebotomy
IV catheter
IM/SC injection
Waiting for procedures
Movement from bed to chair
Chest X-ray
• None (0)
• Transfer to a procedure
• Vitals signs
• PO medications
Morrison et al, JPSM 1998
Prevalence of Painful and Uncomfortable
Procedures
Hip Fracture
Pneumonia
Cog
Intact
(N=59)
No (%)
Dementia
(N=38)
No (%)
Cog
Intact
(N=39)
No (%)
Dementia
(N=80)
No (%)
15 (30)
12 (37)
6 (15)
9 (11)
2 (3)
1 (3)
2 (5)
4 (5)
Indwelling Bladder Catheter*
33 (57)
23 (61)
4 (10)
46 (58)
IV Catheter Insertion After Admission
44 (76)
31 (82)
32 (80)
65 (81)
Mechanical Restraints
1 (2.0)
12 (32)
1 (3)
12 (15)
1 (2)
1 (3)
0
4 (5)
Daily Phlebotomy For Over 50% of
Admission
33 (57)
27 (71)
19 (48)
36 (45)
IV Catheter Present for Entire Admission
25 (66)
24 (41)
44 (55)
25 (63)
Arterial Blood Gas
Central Line Placement
Nasogastric Tube
Morrison & Siu, JAMA, 2000
Other Sources of Suffering in Dementia
•
•
•
•
Loss of identity and personhood
Loss of control
Loss of meaning and purpose
Burden on loved ones (physical,
financial, emotional, spiritual)
Care For for the Seriously Ill at the
Turn of the Century (2000)
• Unprecedented gains in life expectancy:
exponential rise in number and needs of frail
elderly
• Cause of death shifted from acute sudden
illness to chronic episodic disease
• Untreated physical symptoms
• Unmet patient/family needs
• Disparities in access to care
• An strained health care system facing enormous
and increasing expenditures
Reducing Suffering…
• 94 y/o with severe congestive
heart failure, a systolic blood
pressure of 100, and shortness
of breath at rest or with mild
exertion. She is treated with an
ACE inhibitor, a beta blocker,
and judicious use of diuretics.
She is disoriented to time and
place but recognizes her family
although frequently cannot
remember or confuses their
names
• Is this resident terminally ill?
Traditional Medicine
D
Life
Prolonging/Curative
Care
End of E
Life Care
(Hospice) A
T
Disease Progression
H
A New Vision of Health Care for Persons with
Serious Illness
Disease Modifying Therapy
Curative, or restorative intent
Life
Closure
Death &
Bereavement
Diagnosis
Palliative Care
Hospice
NHWG; Adapted from work of the Canadian Palliative Care Association &
Frank Ferris, MD
Palliative Care Programs:
• Interdisciplinary care teams that aim to
relieve suffering, improve quality of life,
optimize function, and assist with
decision making for patients with
advanced illness and their families.
• Provided simultaneously with all other
appropriate medical treatment.
NCP for Quality Palliative Care, 2004
What Do Palliative Care Programs Do?
(“What’s in the Syringe?”)
N=325 patients
Manfredi et al, JPSM, 2000
The Beneficial Effects of Hospice for
Patients/Families
• National Mortality Follow-Back Survey*
– Overall quality of care reported higher in hospice compared to
hospitals, NH, home health services
– Improved emotional support for decedents and their families*
• Medicare claims data†
– Wives of husbands receiving hospice services prior to death had
lower 18 month mortality rates than bereaved wives of men not
receiving hospice (4.9% vs 5.4)
• Retrospective medical record review‡
– Nursing home residents receiving hospice services significantly
more likely to receive pain assessment and opioid therapy in the
last 48 hours of life
*Teno et al, JAMA, 2004; †Christakis & Iwashyna, Soc
Sci Med, 2003; ‡Miller et al, JPSM, 2003
The Beneficial Effects of Hospice for
Patients/Families
• Study of 54 relatives of patients who died in
hospital while receiving palliative care
consultation matched to 95 relatives of patients
who died while receiving usual care
– 65% of family members of patients receiving hospital
reported that their emotional or spiritual needs were
met as compared to 35% of UC patients’ family
members (P=0.004)
– 67% of PC patients’ family members reported
confidence in one or more self-efficacy domains as
compared to 44% of UC patients’ family members
(P=0.03)
Gelfman LP, Meier DE, Morrison RS, Presented at AAHPM Annual
Meeting, 2007
Palliative Care Programs are Fiscally
Responsible
Live Discharges
Usual
Care
Palliative
Care
Hospital Deaths
P
Usual
Care
Palliative
Care
P
Admission
$12,089
$10,608
<.001
$23,682
$16,543
<.001
Laboratory
$1,413
$999
<.001
$3,026
$1,835
<.001
ICU
$6,974
$1,726
<.001
$15,531
$7,755
.045
Pharmacy
$2,651
$2,534
.27
$6,148
$3,684
<.001
Imaging
$901
$907
<.001
$1,789
$1,346
.75
Died in ICU
X
X
X
18%
4%
<.001
Special Challenges of Providing
Palliative Care for Persons with AD
• Difficulty in finding meaning and value in caring
for non-communicative patients
• Loss of primary care providers that treated
patients prior to the onset of their dementia
• Lack of advocates/surrogates for dementia
patients to help with decision making
– 50% of dementia subjects admitted to hospital lacked
a functioning surrogate who could consent for
medical treatment (Baskin et al, JAGS, 1998)
What Can We Do?
• Integrate life prolonging care with care focused on
comfort with a continual re-evaluation as to how to
optimize quality of life and meet changing goals of care
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
Preserving dignity
Support for families
and loved ones
Where do we go from here?
• Integration of life prolonging care with care
focused on comfort with a continual reevaluation as to how to optimize quality of life
• Promotion of advance care planning in early
stages of cognitive impairment with focus on
goals of care and acceptable quality of life
– Not medical interventions
• Focused efforts on identifying and treating
distressing symptoms
• Efforts focused on developing palliative care
within long-term care settings
National Consensus Project on
Quality Palliative Care
• Mission: To create a set of voluntary clinical
practice guidelines to guide the growth and
expansion of palliative care in the United States
• Clinical Practice Guidelines: In the absence of
organized programs or specialists, guide
clinicians to incorporate vital aspects of palliative
care into their practice to improve care for their
sickest patients, over the course of their
illnesses
NCP Clinical Practice Guidelines
Domains
1.
2.
3.
4.
5.
6.
7.
8.
Structure and Process of Care
Physical
Psychological and Psychiatric
Social
Spiritual, Religious and Existential
Cultural
The Imminently Dying Patient
Ethics and Law
What Can You Do?
• Health care organizations: Use the
guidelines to start a palliative care
program for efficient, effective
management of your sickest patients
• Clinicians: Ask for a palliative care
program applying these guidelines in
support of your care; or, in the absence of
a program, use standards to provide core
elements to care of sickest patients
What Can You Do?
• Palliative care advocates: Champion adoption
and use of guidelines in your organization &
field and share with colleagues
• Patients and families: Choose health care
organizations and providers who have adopted
clinical practice guidelines, and ask for a
palliative care consult when you are facing
advanced chronic or life-threatening illness
National Consensus Project Voluntary
Clinical Practice Guidelines for Quality
Palliative Care
For more information:
www.nationalconsensusproject.org
Although the world is full of
suffering, it is also full of the
overcoming of it.
Helen Keller, Optimism 1903