Transcript Social Justice at the End of Life

Empowering Patients with
Information & Choices
APHA
November, 2010
Patient Concerns
 61% - Prolongation of dying
 40% - Strengthening relationships
 38% - Achieving sense of control
 38% - Relieving burdens on loved ones
 28% - Pain and symptom management
Singer, et al JAMA, Jan. 13, 1999
What Patients, Family, Physicians &
Other Providers Consider Important
 Be kept clean
 Have nurse with whom patient is comfortable
 Know what to expect
 Have someone who will listen
Karen Steinhauser, Nicholas Christakis, et al. JAMA, Nov. 2000
What Patients, Family, Physicians &
Other Providers Consider Important
 Maintain one’s dignity
 Trust one’s physician
 Have financial affairs in order
 Be free of pain
Karen Steinhauser, Nicholas Christakis, et al. JAMA, Nov. 2000
Wide Disagreement within Groups
 Use of all available treatments
 Not be connected to machines
 Know the timing of one’s death
 Die at home
 Be with pets
 Meet with clergy
Karen Steinhauser, Nicholas Christakis, et al. JAMA, Nov. 2000
What Patients, But Not Physicians,
Consider Important
 Be mentally aware
 Be at peace with God
 Not be a burden to family
 Be able to help others (88%)
Karen Steinhauser, Nicholas Christakis, et al. JAMA, Nov. 2000
What Patients, But Not Physicians,
Consider Important
 Pray
 Have funeral arrangements
 Not be a burden to society (81%)
 Feel one’s life is complete
Karen Steinhauser, Nicholas Christakis, et al. JAMA, Nov. 2000
Deplorable End-of-Life Care
 50% die with sustained, severe pain
 75% have severe breathlessness
 73% have intolerable symptoms, according to family
 Nation suffers from “opiophobia”
Lynn et al Annals of Internal Med. Jan. 15, 1997
Support Investigators JAMA< Nov. 22/29, 1995
Wishes Not Honored
 No correlation between expressed wishes about life-
sustaining therapy and their use
 Disregard to Advance Directives
 Poor communications between doctors/patients and
doctors/families
 Intense intervention had no effect
Support Investigations 274 JAMA (1995)
DISCLOSURE OF PROGNOSIS TO
CANCER PATIENTS
100%
300 Patients in Hospice
90%
80%
121 Cases - Doctors would
communicate an inaccurate prognosis
40.30%
70%
60%
111 Cases - Doctors would disclose
frank prognosis
50%
40%
68 Cases - Doctors would not disclose
prognosis
31%
30%
20%
10%
22.70%
0%
1
Lamant & Christakis, Annals of Internal Medicine, 6/2001
Disclosure to Advanced Cancer Patients
2008
 98% - Inform this is life-ending disease
 43% - Always or usually give time frame
 57% - “sometimes, rarely, never” give time frame
96% - Prognosis communication training absent or
inadequate
Daugherty & Hlubocky “What are Terminally Ill Cancer Patients Told…”J Clin. Onc. Dec. 20, 2008
Lamant & Christakis, Annals of Internal Medicine, 6/2001
Why is Talking So Important?
I.
Opens dialogue on benefits and burdens of diseasespecific treatment
• Chemotherapy caused or hastened death in 27% of 600
CA deaths within 30 days of treatment
“For Better or Worse?” – Report by National Confidential Inquiry into Patient Outcome and Death” – 2008
• Tarceva in Advanced non-small-cell lung cancer, 8.9%
responded to drug. 6.7 mo survival vs. 4.7 month
placebo.
Shephard et al “Erlotinib in previously treated…” NEJM July 14, 2005
II. Enables Planning Place of Death
•
Most cancer patients want to die at home
36% die in acute care hospital

8% die in ICU
≈ 25% Medicare costs are ICU in last 30 days of life.

Deaths in hospital or ICU, compared to home
hospice




Lower quality of life score
Higher level of physical and emotional distress
Higher risk for prolonged grief disorder in survivors.
Wright et al “Place of Death: Correlations with QOL… J Cln. Onc Sept. 13, 2010
III. Can Initiate Early Palliative Care
Conclusions:
Among patients with metastatic non-small-cell lung
cancer, early palliative care led to significant
improvements in both quality of life and mood. As
compared with patients receiving standard care, patients
receiving early palliative care had less aggressive care at
the end of life but longer survival. (3 months)
Temel et al: Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer NESM August 19, 2010
Our Vision
A society where people receive
state-of-the-art care and a
full range of choices for dying in
comfort, dignity and control.
Social Change to Empower Patients and
Incent Doctors
 Public Education
 Professional Education
 Legislation
 Litigation
Professional Education
 $350 million over 10 years
A Constitutional Right to Palliative Care
 “The parties and amici agree that in these states
(New York & Washington) a patient who is
suffering from a terminal illness and who is
experiencing great pain has no legal barriers to
obtaining medication, from qualified physicians,
to alleviate that suffering, even to the point of
causing unconsciousness and hastening death…”
Justice O’Connor
Vacco v Quill 117 S. Ct @ 2303
Legal Aid in Dying
 Oregon
1997
DWD Act
 Washington
2008
DWD Act
 Montana
2010
Court Ruling
What do we call this?
The choice of a mentally competent, terminally ill
person, who finds dying process intolerable, to selfadminister medications to control time and manner of
death
Aid in Dying
The following organizations all reject use of term
“assisted suicide,” recognizing this choice is no kind of
‘suicide’:
 American Public Health Association
 American Medical Women’s Association
 American Academy of Hospice and Palliative Medicine
 Oregon Department of Human Services
22
Secondary Effects of Death with Dignity
Laws
 Increased interest and expertise in pain and symptom
management
 High Rate of Home Deaths
 High POLST Adherence
Doctors’ Responses to Legal Aid-InDying Since 1994
A Great Deal
Somewhat
Only a Little
Not at All
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Confidence in
Using Pain
Medication has
Improved
Improved
Knowledge in
Recognizing
Depression in
Dying Patients
Improved
Knowledge Using
Pain Medication in
Dying Patients
Ganzini, et al. JAMA, 5/9/2001
END-OF-LIFE CARE IN OREGON
% Deaths in Hospital
57%
31%
% Deaths at Home
20%
32%
% Hospice Penetration
22%
37%
0
U.S. Average
Oregon
20
40
 Lowest Rate of Deaths in Hospital in U.S.
 Highest Rate of Deaths at Home.
 High Hospice Penetration.
60
CA AB 487
2001
 Mandates CME in pain and palliative care in order to
retain CA medical license.
Life Sustaining Treatment Preferences
Act of 2009 (HR 1898)
 HR 1898, the Life Sustaining Treatment Preferences
Act of 2009 would provide coverage under the
Medicare Program for consultations regarding POLST.
 Congressman Blumenauer has introduced the
“Personalize Your Care Act.”
Non-Reimbursement
 Should Medicare reimburse hospitals for care that is in
direct conflict with the expressed wishes of a patient?
Conscience and Informed Consent
 Study of Controversial Clinical Practices
 16% of physicians object to terminal sedation
> 100 million Americans have physicians who object to referrals
> 40 million Americans have physicians who don’t feel obligated
to disclose legal alternatives
Curlin et al “Religion, Conscience and Controversial Practices” NEJM 2/8/07
2008 California Right to Know Act
 Requires physicians, upon the patient’s request, to
provide comprehensive information about the
patient’s health care options. This may include (but is
not limited to) hospice care, curative treatment,
withdrawal or refusal of life-prolonging treatments,
symptom management to help control pain, nausea,
breathlessness and fatigue and other clinical
treatments used for a patient who is actively dying.
2010 - New York Palliative Care
Information Act
 Duty to start conversation rests on physician
 If patients desires, doctor must disclose prognosis and
all appropriate end-of-life options
 $10,000 fine for noncompliance
Opposition and Resistance from
Medical Society of New York
 “Mandating physicians to offer terminally ill patients
information about end-of-life care options may
undermine patients’ beliefs and convictions that they
can prevail against the disease and could undercut
their confidence in the course of treatment and in
their physician.” – Dr. Leah McCormack, letter to MSNY members
One in six of America’s doctors
receives training in New York