Implementing Recovery in Practice: EvidenceBased Medicine and Patient Choice

1
Implementing Recovery in Practice
Evidence-Based Medicine and Patient Choice
yale program for recovery and community health

• Larry Davidson, Ph.D.
• Director, Program for Recovery and Community
  Health
• Professor of Psychiatry
• Yale University School of Medicine

2
What I Hope to Cover
yale program for recovery and community health

• The Timeliness of this Question
• Evidence-Based Medicine versus Evidence-Based
  Practices
• The Nature of Recovery from and in Serious Mental
  Illnesses
• The Makings of A Few Tasty Vinaigrettes
• (questions and comments welcome throughout)

3

• The Timeliness of this Question

4
Evidence-based practices from the perspective of
recovery?
Now just sit down and tell me what seems to be
the trouble.
5
Recovery from the perspective of evidence-based
practice?
6
The Need for Translation

• Coming Attractions
• There is nothing about evidence-based medicine
  that contradicts recovery values
• There is nothing about the recovery movement that
  is antithetical to the use of evidence to improve
  the quality of care
• Evidence-based medicine and the recovery movement
  can complement each other
• Spelled out in detail in Davidson L, Drake RE,
  Schmutte T, Dinzeo T, Andres-Hyman R Oil and
  water or oil and vinegar? Evidence-based medicine
  meets recovery. Community Mental Health Journal,
  in press.

7

• 2. Evidence-Based
• Medicine versus
• Evidence-Based
• Practices

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Evidence-Based Medicine

• Evidence-based medicine is not the same as
  evidence-based practices.
• Evidence-based medicine is a broader concept that
  refers to how medical staff (should) practice
  medicine, including but not limited to
  incorporating different forms of evidence.
• Evidence-based practices may (or may not) be used
  within the context of evidence-based medicine.

9
The When of Evidence-Based Medicine
The Islamic philosopher, scientist, and physician
Avicenna offers the first written suggestion that
physicians test medical interventions for their
effectiveness in his 11th Century work the Cannon
of Medicine.

• The contemporary interest in evidence- based
  practice can be traced to Archie Cochrane, a
  Scottish epidemiologist, who published
  Effectiveness and Efficiency Random Reflections
  on Health Services in 1972.

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The What of Evidence-Based Medicine

• The term "evidence-based medicine" appeared first
  in the medical literature in 1992 in Guyatt G,
  Cairns J, Churchill D, et al. Evidence-Based
  Medicine Working Group "Evidence-based
  medicine. A new approach to teaching the practice
  of medicine." JAMA 19922682420-5.
• The term has been defined as the integration of
  at least three main elements best research
  evidence with clinical expertise and patient
  values" (Sackett, 2000).

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An Important Confusion

• Somewhere along the way, evidence-based
  practice (i.e., what doctors do) became confused
  with evidence-based practices (those
  interventions which have been shown to be
  effective).
• This had led some to suggest broad-scale and
  indiscriminate adoption of evidence-based
  practices for everyone with a select condition
  (regardless of the other evidence and other
  relevant factors).

12
Response to Criticism

• According to Sackett, BMJ 199631271-72
  Evidence based medicine is not cookbook
  medicine. Because it requires a bottom up
  approach that integrates the best external
  evidence with individual clinical expertise and
  patients' choice, it cannot result in slavish,
  cookbook approaches to individual patient care.

13
How does this relate to the recovery movement?

• At its most basic level, the recovery movement
  argues that people with serious mental illnesses
  be offered evidence-based medicine just like
  everyone else. That, in most instances, they be
  treated in the same way that all other
  individuals are treated. In this case, that they
  have the same freedom to choose, and right to
  consent to or decline any given intervention that
  we might suggest.
• This is because the recovery movement argues
  that people with serious mental illnesses have
  been, are, and remain people just like everyone
  else, with the same rights and responsibilities
  as everyone elseeven that their crises should be
  managed like everyone elses.

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• 3. The Nature of Recovery from and in Serious
  Mental Illnesses

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Different forms of Recovery

• The recovery movement has introduced different
  senses or forms of the concept of recovery in
  relation to serious mental illnesses
• This, too, has created confusions, which I will
  try to clarify
• One form of recovery refers to people with
  serious mental illnesses remaining people

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Stepping back The Recovery Movement
Im The Evidence!

• Three primary sources
• Consumer/Survivor Movement
• Addiction Self-Help/12 Step Community
• Longitudinal Clinical Research published by
  Strauss, Harding, and others beginning in 1972
  and consistently since (over 30 studies in over
  30 countries for over 30 years cf. Davidson L,
  Harding C, Spaniol L, Recovery from severe
  mental illnesses Research Evidence and
  Implications for Practice, 2005)

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What has it accomplished?

• Since the 1999 U.S. Surgeon Generals Report on
  Mental Health, recovery has been identified by
  the U.S. Government (and an increasing number of
  other governments besides) to be the primary,
  overarching goal of mental health care.
• According to the Surgeon General, mental health
  care needs to become consumer oriented and
  focused on promoting recovery. That is, the goal
  of services must not be limited to symptom
  reduction but should strive for restoration of a
  meaningful and productive life. (p. 455)

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How to Promote Recovery?

• Decrease stigma, discrimination, and other
  barriers to access to care
• Facilitate early identification and ensure timely
  access to early intervention
• Utilize practices that are effective (i.e., that
  are evidence-based)
• Eliminate health care disparities based on race,
  culture, and ethnicity (2001 report)

19
But is this enough to ensure recovery?

• We know currently that few people receive
  effective care in a timely fashion (17)
• We know that current interventions are limited in
  their efficacy (e.g., to 70 of population, to
  positive symptoms, etc.)
• We know that people offered such interventions
  dont always derive full benefits from them
• There thus is ample skepticism regarding recovery
  from severe mental illnesses

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Longitudinal Clinical Research shows Broad
Heterogeneity in Outcome

• Approximately 33 of individuals diagnosed with a
  serious mental illness will recover from the
  disorder fully over time
• Approximately another 33 will experience
  significant improvements in their condition over
  time, with domains of functioning only loosely
  linked (Strauss Carpenter, 1977)
• 10 will suicide and approximately 25 will
  continue to have a chronic illness

21
This is really not new
One cannot ignore a striking analogy in natures
ways when one compares the attacks of
intermittent insanity with the violent symptoms
of an acute illness. It would in either case be a
mistake to measure the gravity of the danger by
the extent of trouble and derangement of the
vital functions. In both cases a serious
condition may forecast recovery, provided one
practices prudent management Philippe Pinel in
Memoir on Madness A contribution to the natural
history of man presented to the Society for
Natural History, Paris, France, 1794
22
Even in Chronic Illness

• The idea of madness should by no means imply a
  total abolition of the mental faculties. On the
  contrary, the disorder usually attacks only one
  partial faculty A total upheaval of the
  rational faculty is quite rare
  Pinel, 1794
• Loosely linked domains
  of functioning and co-
  existing competence
• Strauss, 1977, 1995

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Lingering Question

• How will we achieve this vision of the recovery
  movement, that recovery be accessible to and
  possible for everyone?

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Are Serious Mental Illnesses the New Polio,
Smallpox, or HIV?

• Does the government investment in recovery
  translate into investments in research into the
  causes and cures of psychosis?
• A little, but primarily the position is We
  already know how to enable people with mental
  illnesses to live, work, learn, and participate
  fully in the community (DHHS, 2005, p. 1).

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What it Will Take

• Rather than scientific breakthroughs, a keystone
  of the transformation process will be the
  protection and respect of the rights of adults
  with serious mental illnesses (p. 3).
• According to the Action Agenda, this will require
  nothing short of a revolution (p. 18).
• And this is how recovery can be legislated.

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What Kind of Revolution?
The Beggars by Pieter BRUEGEL, the Elder
(1568)
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Disability Laws and Policies

• 1973 Rehabilitation Act
• 1990 Americans with Disabilities Act
• 1999 Olmstead Decision
• 2008 Parity Legislation
• All view serious mental illnesses on a par with
  physical disabilities. People with serious mental
  illnesses retain their rights to
  self-determination, community inclusion, etc.,
  except for certain, limited circumstances,
  specified by law.

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Two Different Forms of Recoveryin relation to
Serious Mental Illnesses

• Recovery from refers to eradicating the symptoms
  and ameliorating the deficits caused by serious
  mental illnesses.
• Being in recovery refers to learning how to live
  a self-determined life in the face of the
  enduring disability which may, at times, be
  associated with serious mental illnesses.

Clinical, Symptomatic, or Functional Recovery (or
remission)
Civil and Disability Rights, Independent Living
Movement (self-determination)
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This is how Recovery becomes possible for
everyone

• A person can be in recovery regardless of the
  duration and severity of the disability.
• Being in recovery only makes sense for people
  who have not yet recovered because it involves a
  process of restoring or developing a meaningful
  sense of belonging and positive sense of identity
  apart from ones disability while rebuilding a
  life in the broader community despite or within
  the limitations imposed by that disability. --
  Connecticut Department of Mental Health and
  Addiction Services, 2002
• This is the right of every citizen.

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Key Issue

• People do not have to wait to recover in order
  to reclaim their citizenship
• Rather, reclaiming citizenship promotes recovery

31
One Example
The right of Social Inclusion People with
mental illness are entitled to a life in the
community first, as the foundation for
recoverynot as its reward. For example,
It is very hard to recover if you dont have a
place to live (a home). Housing cannot be
contingent on compliance or improvement in ones
condition (Housing First). e.g., last weeks
grand rounds.
32
Another Example

• While work may, in fact, be stressful for some
  people with some mental illnesses some of the
  time

Being out of work and poor is sure to be
stressful for most people with most mental
illnesses most of the time And working decreases
symptoms
33
A Final Example

• While some people with some serious mental
  illnesses pose some risks some of the time . . .

most people with most mental illnesses like most
people in generalpose no risks most of the time
(and also make no worse decisions than anyone
else)
34
Implications for Practice

• Recovery is the responsibility of the
  individual with the mental illness, it is not
  something we can do to or for him or her.
• We can offer recovery-oriented care, which
  assists the person to live the best and fullest
  life he or she can given his or her illness and
  life circumstances.

35
Recovery-Oriented Practice

• is person-centered, strength-based, culturally
  responsive, and hope-instilling
• focuses on supporting the persons own efforts
  to manage his or her condition
• while enhancing access to naturally occurring
  opportunities and activities and
• promoting mastery, success, and pleasure as much
  as minimizing disorder and dysfunction (e.g.,
  supported employment).

36
How does this relate to evidence-based practices?

• Supported employment is one. So is supported
  housing.
• But these examples do not address the key issue
  of choice. This, along with health disparities,
  is where the debate lies.

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• 4. The Makings of A Few Tasty Vinaigrettes

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The Crux of the Problem
Well, this is a very impressive resume, young
man. I think youre going to make a fine
patient.
39
The Story of Steve

• In his frequent efforts to promote the
  transformation agenda in Connecticut,
  Commissioner of Mental Health and Addiction
  Services, Tom Kirk, Ph.D., tells the story of a
  27 year-old man named Steve who he met during a
  visit to a supported housing program. When he
  asked the staff how Steve was doing in his
  recovery, Commissioner Kirk reports that they
  responded favorably about how well Steve was
  doing in the program, following the rules, taking
  his medication as prescribed, and having his
  symptoms relatively under control.
• When asked if this was the kind of life they
  hoped for this young man for the foreseeable
  future, the staff seemed puzzled, confident that
  they were doing their best. His condition, after
  all, was stable and he had not been admitted to
  the hospital for several years. Commissioner
  Kirk, however, was not satisfied. He asked the
  staff to go one step further and consider whether
  or not this would be the kind of life that would
  make them content were they in Steves place.
• Once it was phrased this way, the staff began to
  think that more could be done for, and more could
  be expected from, this clever college graduate
  who was engaging, loved cars and racing, and had
  aspirations of becoming a mechanic. But how could
  they help him with that? They had little idea as
  to what they could do beyond treating his
  schizophrenia and encouraging him to participate
  in program activities as a way of luring him away
  from his television set. Becoming a mechanic
  seemed a long way off, if it was to be possible
  at all.

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Evidence-Based Medicine Meets Recovery

• Evidence-based medicine applies to
  recovery-oriented practice (not to recovery per
  se)both emphasize the central role of patient
  choice
• There is ample evidence of recovery from severe
  mental illnessesbetween 33-66 will see
  improvements over time
• Being in recovery is not a matter of evidence,
  but rather a matter of rights (recall the
  wheelchair and Braille examples)it is the right
  to pursue the kind of life one wants to have
  despite a disability

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Is Recovery-Oriented Practice Evidence-Based?

• Three possible relationships
• recovery-oriented practice is consistent with
  evidence-based medicine
• recovery-oriented practice raises questions about
  the nature of what is considered evidence in
  psychiatry
• some recovery-oriented practices are just now
  beginning to be studied

42
Recovery-Oriented Care benefits from
Evidence-Based Medicine

• To the degree that evidence-based refers to a
  collaborative approach involving shared
  decision-making incorporating available data, the
  answer is Yes. Recovery-oriented practice is
  consistent with, and benefits from, the values
  and principles of evidence-based medicine.
• Note that the practice of people actively being
  involved in shared decision-making does not
  itself require evidence. People have the right to
  make decisions about their own care and are to be
  presumed to be competent unless there is a legal
  decision made to the contrary.

43
What passes for evidence in psychiatry?

• To the degree that evidence-based raises the
  question of what constitutes evidence, it brings
  us back to square one and asks us to redefine
  outcome in terms of a meaningful life in the
  community (as opposed, e.g., to reduction in
  symptoms or rates of rehospitalizationwhich is
  not the same as a life in the community).
• We are just beginning to generate evidence
  related to these recovery-oriented outcomes.

44
What practices are effective in promoting
recovery?

• To the degree that evidence-based refers to the
  availability of data to evaluate specific
  interventions (e.g., peer support), the data is
  just now being collected and so far suggests that
  these interventions are at least as effective as
  usual care, and in many cases better.
• It appears easier to help people learn to live
  with the illness than to try to get rid of it.

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Im the evidence!
I.T.E.

• What there is ample evidence for is that people
  can learn (or figure out) how to manage a serious
  mental illness and lead meaningful and
  self-determined lives.

• In this regard, effective practices
• offer information and education and hope
• enhance access to opportunities and activities
• provide in vivo supports (as in
  supported housing, employment, etc.)

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Tasty Vinaigrettes

• Existing interventions include supported housing
  and supported employment
• Promising and emerging practices include
• Supported socialization
• Self-help approaches such as WRAP and Pathways to
  Recovery
• Supported education, spirituality, parenting,
  etc.
• Peer support

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Peer Support
Table 1. Randomized Trials of Peer-Delivered
Conventional Services and Supports
48
ENGAGE STUDY(NIDA R01 DA13856)

• Demographics
• 134 Participants
• Standard Care n 44
• Skills Training n 47
• Engage n 43
• 83 not employed at baseline (n 113)
• 56 African American
• 32 Caucasian
• 14 Hispanic (n 19)

66 never married 6 married 11 participants
lived with someone else 65 male (n 88) 34
female (n 46) ALL had co-occurring psychosis
substance use disorder
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CCCS (Collaborative and Culturally Competent
Services)

• Engage participants demonstrated significantly
  greater improvement in CCCS scores from baseline
  to 9-months than Standard Care (est. -16.36,
  p.04) and Skills Training (est. -19.04, p.01)

50
Social Functioning Scale

• Engage participants have a significantly greater
  increase in social functioning from baseline to
  9-months than Standard Care (est. -.43, p .01)
  and Skills Training (est. -.31, p.05)

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Alcohol Severity IndexImportance of Additional
Treatment for Alcohol Use

• Engage participants had a significantly greater
  increase in ratings of the importance of
  additional alcohol use treatment from baseline to
  3-months than Skills Training (est.-3.05,
  plt.001) and Standard Care (est. -2.89, plt.001)

52
Problems with alcoholin last 30 days

• Engage participants demonstrated a significantly
  greater reduction in problems with alcohol use in
  the past 30 days from baseline to 3 months than
  Standard Care (est. 8.84, plt.001) and Skills
  Training (est. 7.89, plt.001)

53
spent on Alcoholin last 30 days

• Engage participants had a significantly greater
  reduction in spending on alcohol than Standard
  Care (est. 101.49, p .04)

54
Total Duration of Services during 1st and 2nd
year post-baseline

• Engage have a significantly greater increase in
  time spent in services from before baseline to
  the first year after baseline than Standard Care
  (est.-765.26, p .04) and Skills Training
  (est. -1183.19, plt.001)

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Peer Engagement Study
Randomized, controlled trial of assertive
outreach with and without peer specialist staff
for people who would be considered eligible for
outpatient commitment in other states.
People not receiving People
receiving peer specialists
peer specialists
Not engaged - Control Group
Not engaged - Intervention Group
Linear (Not engaged - Control Group)
Linear (Not engaged - Intervention Group)
10
Level of engagement
9
8
7
6
5
Average Contacts Per Month
4
3
2
1
0
0
1
2
3
4
5
6
Month from the Baseline Interview
56
Culturally-Responsive Person-Centered Care for
Psychosis (NIMH R01-MH067687)

• Demographics
• 278 participants
• 143 Hispanic origin 135 African origin
• Conditions
• IMR 84
• IMR Peer Advocate 94
• IMR Peer Advocate 100 and Connector

Mean age 44 Average education level 11
years 15 employed 57 male (n 88) 43 female
(n 46)
57
6-Month Process and Outcome Data
Peer-Run Community Integration Program Peer-Faci
litated Person-Centered Care Planning Illness
Management Recovery Medicatio
n, Monitoring Case Management

• ? Psychotic Symptoms but ? Distress from Symptoms
• ? Satisfaction with Family Life, Positive
  Feelings about Self Life, Sense of Belonging,
  Social Support
• ? Engagement in Managing Illness Use of Humor
  as Coping Strategy
• ? Sense of Responsiveness Inclusion of
  Non-Treatment Issues in Care Planning
• ? in Spiritual Coping
• ? Sense of Control in Life Power of Anger to
  Impact Change
• ? Satisfaction with Work Status
• ? Paranoid Ideation Medical Problems
• ? Social Affiliation Satisfaction with Finances
• ? Coping Sense of Participation
• ? Sense of Activism
• Psychosis
• African and/or Hispanic
• Origin

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This is really not new, either
From Pinels 1801 Treatise on Insanity

In lunatic hospitals, as in despotic
governments, it is no doubt possible to maintain,
by unlimited confinement and barbarous treatment,
the appearance of order and loyalty. The
stillness of the grave, and the silence of death,
however, are not to be expected in a residence
consecrated for the reception of madmen. A degree
of liberty, sufficient to maintain order,
dictated not by weak but enlightened humanity,
and calculated to spread a few charms ever the
unhappy existence of maniacs, contributes, in
most instances, to diminish the violence of the
symptoms, and in some, to remove the complaint
altogether.
59
Jean Baptiste Pussin

Such was the system which the governor of Bicetre
endeavoured to establish on his entrance upon the
duties of his present office. Cruel treatment of
every description, and in all departments of the
institution, was unequivocally proscribed. No man
was allowed to strike a maniac even in his own
defence. No concessions however humble, nor
complaints nor threats were allowed to interfere
with the observance of this law. The guilty was
instantly dismissed from the service. In might
be supposed, that to support a system of
management so exceedingly rigorous, required no
little sagacity and firmness.
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Peer Support in the 19th Century

• The method which he adopted for this purpose was
  simple, and I can vouch my own experience for its
  success.
• His servants were generally chosen from among
  the convalescents, who were allured to this kind
  of employment by the prospect of a little gain.
  Averse from active cruelty from the recollection
  of what they had themselves experienceddisposed
  to those of humanity and kindness from the value,
  which for the same reason, they could not fail to
  attach to them habituated to obedience, and easy
  to be drilled into any tactics which the nature
  of the service might require, such men were
  peculiarly qualified for the situation. As that
  kind of life contributed to rescue them from the
  influence of sedentary habits, to dispel the
  gloom of solitary sadness, and to exercise their
  own faculties, its advantages to themselves are
  equally transparent and important. -- Pinel, 1801

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Jean Baptise Pussin
1st Peer Supporter
62
Earlier in the 20th Century

• Harry Stack Sullivan
• People with psychosis are much more
  fundamentally human than otherwise
• Suffered from psychosis himself, and hired
  recovered and recovering patients to be staff

63
So now what do we do?

• Offer evidence-based practices to those people
  who will be likely to benefit from them and
  assess their responsiveness.
• Offer them in a person-centered fashion in
  combination with clinical skill and within the
  context of a collaborative relationship.
• Appreciate the distinction between minimizing
  illness and maximizing health and the need to
  attend to both.

64
Will it matter?

• Mental illnesses are highly disabling, and, as
  recent reviews have emphasized, our science has
  not come even close to being able to cure or
  prevent them. Learning to live better in the face
  of mental illness doesnt alter that reality.
• -- Dickerson (2006)

65
Many People with Serious Mental Illnesses appear
to Think so

• From the perspective of the person with the
  disorder, Dickerson has it backward. It is
  especially when the illness is most severe, and
  because we do not yet have a cure, that people
  who have these disabling disorders have no choice
  but to live in the face of them. This is the
  reality that takes priority in recovery-oriented
  care.
• -- Davidson, OConnell Tondora (2006)

66
What is new

• When I am on the job, I do my job. I think
  everybody is capable of doing something. For many
  years, I did nothing. I was overmedicated and lay
  on the couch. That is the way I thought my life
  would always be. Now, the whole thing of mental
  health is changing. Its really wonderful to see
  all these changes. Years ago, you didnt have
  much to look forward to. I thought I would spend
  the rest of my life in an institution. Now look
  at what has happened. I had a lot of people who
  pushed me along the way. I still have issues with
  self-esteem but if you have people saying that
  you can, you can try little things at a time.

67

• There has been a lot of progress in the mental
  health field. I think that the mental health
  field has changed. I think it is very pro-client,
  pro-patient. When I deal with people, I find that
  they are very concerned. They really want to help
  you... Staff doesnt push you to do things that
  you arent able to do. They help you do things
  that you can do. They help you find goals. I
  think that the profession has improved a million
  times.

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Questions or Comments