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Relative change in transplant data. Wait List. 101,043. 9,048. Deaths and Wait List Removals. Change relative to 1995 baseline. 7,984. Deceased Donors. What To Do?. All efforts so far: nibbling at the edges Dramatic, effective change is needed - PowerPoint PPT Presentation
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Relative change in transplant data
1
1.5
2
2.5
1995
1997
1999
2001
2003
2005
2007
Chan
ge re
lativ
e to
199
5 ba
selin
e
Deaths and Wait List Removals
Deceased Donors
Wait List
7,984
101,043
9,048
What To Do?What To Do?
All efforts so far: nibbling at the edges Dramatic, effective change is needed If there are insufficient volunteers to work
construction atop skyscraper as diplomat in dangerous 3rd world country other undesirable jobs
How do we volunteers? We pay them more
All efforts so far: nibbling at the edges Dramatic, effective change is needed If there are insufficient volunteers to work
construction atop skyscraper as diplomat in dangerous 3rd world country other undesirable jobs
How do we volunteers? We pay them more
Financial Incentives (FI)Financial Incentives (FI)
We should make all reasonable efforts to organ donation
“reasonable” defined by evidence, not by emotions
study FI for deceased donations w pilot studies FI not intrinsically unethical (benefits:harms) pilot studies can measure benefits:harms pilot studies in limited area (1 state or small group)
Change NOTA, based on high benefits/harms
FI highly effective in every sector of economy b/c they expand options in personal lives
We should make all reasonable efforts to organ donation
“reasonable” defined by evidence, not by emotions
study FI for deceased donations w pilot studies FI not intrinsically unethical (benefits:harms) pilot studies can measure benefits:harms pilot studies in limited area (1 state or small group)
Change NOTA, based on high benefits/harms
FI highly effective in every sector of economy b/c they expand options in personal lives
Reasons Not to DonateReasons Not to Donate
Desire to bury body intact (religion, own belief) Avoidance of confronting loss, own mortality Distrust of medical community Belief that allocation is not equitable Misunderstanding of tx effectiveness Lack of understanding of brain death Stresses at time of sudden unexpected death
Desire to bury body intact (religion, own belief) Avoidance of confronting loss, own mortality Distrust of medical community Belief that allocation is not equitable Misunderstanding of tx effectiveness Lack of understanding of brain death Stresses at time of sudden unexpected death
NOTA Allows 1 Reason to DonateNOTA Allows 1 Reason to Donate
The sole permissible incentive: Service to others (altruism)
The sole permissible incentive: Service to others (altruism)
Objections to FI for Deceased DonorsObjections to FI for Deceased Donors
Main objections: FI Will Harm/Benefit, Organ Donation FI will undermine social fabric
dilute desirable spirit of altruism commodify human body parts introduce coercion, voluntariness
Main objections: FI Will Harm/Benefit, Organ Donation FI will undermine social fabric
dilute desirable spirit of altruism commodify human body parts introduce coercion, voluntariness
FI
Will
Harm/Benefit:
Organ
Donation
FI
Will
Harm/Benefit:
Organ
Donation
Donation b/c $$$ anger/insult BUT, ppl familiar w payment for valuable goods We can measure this in pilot study
Donation b/c $$$ anger/insult BUT, ppl familiar w payment for valuable goods We can measure this in pilot study
Impulse to do good not binary (all-or-none) most ppl part altruist, part self-interested FI might add enough motivation to persuade
Motivation variable, law blunt instrument FI: token of societal gratitude (=tax incentives) Level of social cohesion measurable!
Impulse to do good not binary (all-or-none) most ppl part altruist, part self-interested FI might add enough motivation to persuade
Motivation variable, law blunt instrument FI: token of societal gratitude (=tax incentives) Level of social cohesion measurable!
FI
Will
Undermine
Social
Fabric:
Dilute
Desirable
Spirit
of
Altruism
FI
Will
Undermine
Social
Fabric:
Dilute
Desirable
Spirit
of
Altruism
Donors of blood and other tissues paid no compelling ethical distinction from organs
Donation implies property rights in organs “One cannot give away what one does not own any more
than one can sell it” (AMA 1995) Recipients pay for organs—only the donor does not
benefit financially! Type of FI & $ amt regulated, no organ bazaar
Donors of blood and other tissues paid no compelling ethical distinction from organs
Donation implies property rights in organs “One cannot give away what one does not own any more
than one can sell it” (AMA 1995) Recipients pay for organs—only the donor does not
benefit financially! Type of FI & $ amt regulated, no organ bazaar
FI
Will
Undermine
Social
Fabric:
Commodify
Human
Body
Parts
FI
Will
Undermine
Social
Fabric:
Commodify
Human
Body
Parts
Informed consent must be voluntary FI more likely poor to donate, so
burden of donation on poor un =, unfair Circumstances of poor make FI coercive BUT, well-off don’t clean toilets, pick berries
we don’t ban toilets and berries we allow free choice, make conditions safe
What is coercion? In context of free society: Forcing others to do what they would not otherwise
do. So FI not coercive.
Informed consent must be voluntary FI more likely poor to donate, so
burden of donation on poor un =, unfair Circumstances of poor make FI coercive BUT, well-off don’t clean toilets, pick berries
we don’t ban toilets and berries we allow free choice, make conditions safe
What is coercion? In context of free society: Forcing others to do what they would not otherwise
do. So FI not coercive.
FI
Will
Undermine
Social
Fabric:
Coercion
Voluntariness
FI
Will
Undermine
Social
Fabric:
Coercion
Voluntariness
FI not intrinsically unethical FI acceptable when benefits/harms positive
every fear about FI based on assumptions yet, effects of fears about FI measurable no good reason to prohibit pilot study of FI policy/law then based on evidence, not emotion
Pilot studies must be ethically designed sound science, measurable outcomes, set time FI moderate value, lowest level to donation FI only for deceased donors, not living no buying organs: allocation by UNOS algorithms
FI not intrinsically unethical FI acceptable when benefits/harms positive
every fear about FI based on assumptions yet, effects of fears about FI measurable no good reason to prohibit pilot study of FI policy/law then based on evidence, not emotion
Pilot studies must be ethically designed sound science, measurable outcomes, set time FI moderate value, lowest level to donation FI only for deceased donors, not living no buying organs: allocation by UNOS algorithms
InferencesInferences
FI for Pilot Studyfor SC or Region 11
FI for Pilot Studyfor SC or Region 11
Examples, (likely) most to least effective: Deposit of $1,000-5,000 into donor’s estate Estate tax credit $10,000 Funeral expenses up to $5,000
Examples, (likely) most to least effective: Deposit of $1,000-5,000 into donor’s estate Estate tax credit $10,000 Funeral expenses up to $5,000
The case for FI fundamentally a moral one: Which is morally preferable:
prohibit FI because society might degenerate or more poor might choose to donate
offer $1,000-5,000 and save up to 8 lives for every new donor
The case for FI fundamentally a moral one: Which is morally preferable:
prohibit FI because society might degenerate or more poor might choose to donate
offer $1,000-5,000 and save up to 8 lives for every new donor
Relative change in transplant data
1
1.5
2
2.5
1995
1997
1999
2001
2003
2005
2007
Chan
ge re
lativ
e to
199
5 ba
selin
e
Deaths and Wait List Removals
Deceased Donors
Wait List
7,984
101,043
9,048
A Final WordA Final Word
“We have never encountered a single policy more at odds with public welfare than the current [altruism-only] organ procurement policy in the United States . . . If the current policy is maintained, the shortage will continue to grow worse, as will the needless suffering.
“We have never encountered a single policy more at odds with public welfare than the current [altruism-only] organ procurement policy in the United States . . . If the current policy is maintained, the shortage will continue to grow worse, as will the needless suffering.
--Blair and Kaserman, Yale Journal of Regulation, 1991--Blair and Kaserman, Yale Journal of Regulation, 1991
Rapid Organ Recovery Ambulances Update
Last Updated: Thu, 11/19/2009 - 1:57pm
Early in 2008, Judicial Watch initiated an investigation of a government sponsored organ procurement program. The program, known as Rapid Organ Recovery Ambulances (RORA), was administered in New York City and received funding from the Health Resources and Services Administration of the Department of Health and Human Services. As highlighted in a June blog series, the program breached ethical and medical standards, discriminately targeted minorities, and raised institutional credibility questions.
As part of its investigation, Judicial Watch sued the Fire Department of New York (FDNY) and reached a favorable settlement after FDNY obfuscated transparency by not disclosing related records. Following its publications on this dubious program, Judicial Watch continued to follow-up to receive the actual program data. Judicial Watch recently received some additional documents that further shed light on the program and demonstrate the power of public exposure.
Many of the program goals for which RORA was funded have yet to be met. As noted in a previous blog entry, the ethical White Paper that was slated to be written by February 2008 has yet to be written as of October 2009. According to HRSA's letter, data from the ambulance and procurement activities have yet to be gathered as “there have been no ambulance or EMS dispatches for rapid organ recovery.” On one hand, readers should be relieved that the program has yet to actually be put into action. On the other hand, however, the US government provided millions of dollars based on a proposal that was not fully carried out. The documents provided do not demonstrate that HRSA stopped funding RORA even after the White Paper was not provided. The documents further do not demonstrate where the money actually went
…
http://www.judicialwatch.org/foiablog/2009/nov/rapid-organ-recovery-ambulances-update.
Rapid Organ Recovery Ambulances Update
Last Updated: Thu, 11/19/2009 - 1:57pm
Early in 2008, Judicial Watch initiated an investigation of a government sponsored organ procurement program. The program, known as Rapid Organ Recovery Ambulances (RORA), was administered in New York City and received funding from the Health Resources and Services Administration of the Department of Health and Human Services. As highlighted in a June blog series, the program breached ethical and medical standards, discriminately targeted minorities, and raised institutional credibility questions.
As part of its investigation, Judicial Watch sued the Fire Department of New York (FDNY) and reached a favorable settlement after FDNY obfuscated transparency by not disclosing related records. Following its publications on this dubious program, Judicial Watch continued to follow-up to receive the actual program data. Judicial Watch recently received some additional documents that further shed light on the program and demonstrate the power of public exposure.
Many of the program goals for which RORA was funded have yet to be met. As noted in a previous blog entry, the ethical White Paper that was slated to be written by February 2008 has yet to be written as of October 2009. According to HRSA's letter, data from the ambulance and procurement activities have yet to be gathered as “there have been no ambulance or EMS dispatches for rapid organ recovery.” On one hand, readers should be relieved that the program has yet to actually be put into action. On the other hand, however, the US government provided millions of dollars based on a proposal that was not fully carried out. The documents provided do not demonstrate that HRSA stopped funding RORA even after the White Paper was not provided. The documents further do not demonstrate where the money actually went
…
http://www.judicialwatch.org/foiablog/2009/nov/rapid-organ-recovery-ambulances-update.
Donation-procurement stepsDonation-procurement stepsTake referral callAssess potential donorTalk with family, request donationManage donor in ICU Place organs (UNOS algorithm)Move donor to OR, manage surg teamsPackage, ship organsComplete all paperwork
Take referral callAssess potential donorTalk with family, request donationManage donor in ICU Place organs (UNOS algorithm)Move donor to OR, manage surg teamsPackage, ship organsComplete all paperwork
Basic strategy: division of labor, specialized personnel
Basic strategy: division of labor, specialized personnel
Family Support Counselor (counseling, nursing) emotional support education (brain death, value of tx)
Nurse Clinician (ICU nurse) manage donor in ICU
Organ Recovery Coordinator (OR nurse/tech) manage donor in OR, distribute organs
Clinical Services Liaison (business PR/sales) staff education record review
Aftercare Counselor (counseling) follow-up counseling, support groups, satisfaction surveys
Family Support Counselor (counseling, nursing) emotional support education (brain death, value of tx)
Nurse Clinician (ICU nurse) manage donor in ICU
Organ Recovery Coordinator (OR nurse/tech) manage donor in OR, distribute organs
Clinical Services Liaison (business PR/sales) staff education record review
Aftercare Counselor (counseling) follow-up counseling, support groups, satisfaction surveys
HRSA Transplant Center Growthand Management Collaborative
HRSA Transplant Center Growthand Management Collaborative
Best Practices Evaluation (2003-2007) Institutional Vision And Commitment Dedicated Team Aggressive Clinical Style Patient And Family Centered Care Aggressive Management of Performance
Outcomes
Best Practices Evaluation (2003-2007) Institutional Vision And Commitment Dedicated Team Aggressive Clinical Style Patient And Family Centered Care Aggressive Management of Performance
Outcomes
Donation Rate by Year
Year
1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007
Don
ors
per
mill
ion
of p
opul
atio
n
0
10
20
30
40
50
60
All OPO's
Lifepoint 2 S.D.
Origin of Prohibition of FIOrigin of Prohibition of FI
UAGA 1968: no ban on selling/buying Cyclosporine tested 1979, clin use 1982 Tx rapidly → growth industry Organ entrepreneurs NOTA 1984: no “valuable consideration”
harms of pmnt substantially outweigh benefits Benefits:harms has changed in last 20 yrs
UAGA 1968: no ban on selling/buying Cyclosporine tested 1979, clin use 1982 Tx rapidly → growth industry Organ entrepreneurs NOTA 1984: no “valuable consideration”
harms of pmnt substantially outweigh benefits Benefits:harms has changed in last 20 yrs
Sources of Organs for TxSources of Organs for Tx
Deceased donors (brain death) Living donors Donors after cardiac death Xenografts De novo organs (regenerative technologies)
Deceased donors (brain death) Living donors Donors after cardiac death Xenografts De novo organs (regenerative technologies)
Greatest potential gain with least ethical controversy