Jeffrey Alderman, MD, MS Clinical Associate Professor OU School of Community Medicine Connie...

Jeffrey Alderman, MD, MS

Clinical Associate Professor

OU School of Community MedicineConnie McFarland, FAIA, FACHA

President

McFarland Architects

Making Difficult Conversations EasierPalliative Care & Shared Decision Making

Clarehouse End of Life Facility in Tulsa, OK McFarland Architects, P.C.

Learning Objectives• Define how Shared Decision Making (SDM) fits into the U.S. Health

Delivery System

• Understand the benefits and limitations of Shared Decision

Making

• Apply SDM techniques while conducting difficult conversations

with patients and their stakeholders

Health is a state of complete physical, mental, and social well-being

It is not the mere absence of disease or infirmity

World Health Organization

Defining Health

Access

Affordable

Cost

Quality

The U.S. Health Care Delivery System

POORACCESS

EXPENSIVE

LOW QUALITY

SUBOPTIMAL PERFORMANCE


“The problems of health care throughout the world are not primarily ones of medical knowledge or even political will—they are problems of effective management and execution.”

-Jim Yong Kim, MD, PhDPresident, The World Bank

Building a Better Delivery System

TRIPLE AIM

Higher QualityHealthcare

Better Experience

of Care

DecreasedCosts of

Care

Building a Better Delivery SystemCreating Value Requires a Three Prong Approach

Institute for Healthcare Improvement

Access

Affordable

Cost

Quality

Health Insurance Exchanges

Patient Centered Medical Home

Global Risk Contracting

Population Health

Care Management

Chronic Disease Management Programs

Accountable Care

Alternative Payment Model Shared Decision Making

Health Information Technology

Care Coordination Palliative Care

Shared SavingsPatient Activation


• Many Health Reform efforts are designed to advance the triple aim

• Overwhelming, Conflicting, Confusing

• Evidence beginning to emerge about promising initiatives and early successes

The Upshot

Defining U.S. Care Patterns•Essential Care

•Supply Sensitive Care

•Preference Sensitive Care

10%

60%

30%

•Incentivizes doctors and hospitals to do as much as possible

•Doctor centered, not patient centered

•Financially Unsustainable

Supply Sensitive Care: Fee for Service

Overdiagnosis and Unwarranted care•New technology has allowed early diagnosis of conditions and abnormalities that may or may not cause harm.

•New dilemma: should we treat each new abnormality separately as it arises, or should we negotiate with patients about the best course of action?Source: Overdiagnosed – Making People Sick in the Pursuit of Health, Dr. Gil Welch (Beacon Press, 2010)

John E. Wennberg, 1973

Supply Sensitive Care: Practice Variation

• 17-fold variation in tonsillectomy

• 6-fold variation in hysterectomy

• 4-fold variation in prostatectomy

•Underscores the concept: “If we build it, they’ll come.”

• The need for assessing outcomes of common medical practices

Foundation for Informed Medical Decision Making and the Dartmouth Center for Health Care Delivery Science

Preference Sensitive Care

•Uncertain or no clear evidence supporting one testing or treatment option over another

•Options have differing inherent benefits and risks

•Patient values are important in optimizing decisions

The Dartmouth Center for Health Care Delivery Science

Changes in the Doctor-Patient Relationship

•Paternalism → Partnership

•Patient Activation

•Broader Access to Information

•Ascendancy of Chronic Illness

•Expanding Clinical Options

•Greater accommodation of Personal Values

Woolf, AIM, 2005

Shifting Priorities

The care, treatment or support people need and no less.

The care, support or treatment people want and no more.

Strategies to deliver care that people want,rather than care that clinicians feel they should have

Foundation for Informed Medical Decision Making and the Dartmouth Center for Health Care Delivery Science

Providers and Patients share equal decision making roles – it’s not just up to one party or the other

Shared Decision Making

What is Shared Decision Making?

Shared Decision Making (SDM) defined:

•Decisions that are shared by doctors and patients

•Informed by the best evidence available

•Weighted according to the specific characteristics and values of the patient The Dartmouth Center for Health Care Delivery Science

Collaboration among providers, patients and caregivers, where all come to an agreement about health care decisions• Understand the likely outcomes of various options

• Think about what is personally important regarding the risks and benefits of each option

• Make decisions about medical care together


When is SDM Relevant?•SDM is appropriate in any situation

when there is more than one reasonable course of action

•SDM is especially relevant in ‘preference sensitive’ care

•Most (nearly all) health and healthcare decisions are ‘preference sensitive’

Elements of Shared Decision Making

Decision

support

Decision aid

Shared decisio

n making

Coulter, Collins. Making shared decision making a reality in the NHS. Kings Fund July 2011


•Reduces unwarranted variation due to practitioner preferences

•Improves patient satisfaction

•Reduces wish to proceed to invasive treatments

•Empowers the patient when making preference sensitive care choices


Why should we add SDM to practice?•Ethical imperative

• Patients want more involvement

•Legal imperative• Medical-legal requirement to discuss options, risks,

consequences prior to any intervention

•Cost Imperative• Normalizes allocation of resources

• Patients get ‘the care they need and no less, the care they want and no more’

•Education Imperative• Gives patient more information about their health

Challenging the gap…………… from healthcare professionals

We do it already!

Will it work?

My patients don’t want it

What if they don’t do what I think they should do?

I don’t have the time!

Significant Challenges to SDM•Traditional role of provider as decision maker is challenged

•EBM guidelines don’t necessarily take patient preferences into account

•Lengthy SDM Training and Time to Implement

•Measurement still under development (activation, decision quality)

The Case for Recommending Shared Decision Making•Each person is the primary decision-

maker in terms of how they manage their illness(es.)

•Each person and their health care provider hold equally expert roles on deciding ‘what’s best’ for the patient

•Each person is more likely to act upon decisions made by themselves rather than those made for them by a someone else

Decision Aids

•Expands counseling beyond the time constraints of busy office visits

•Improve Informed Consent

•Multiple Media•Print/Video/Decision boards/Audio/Web Formats The Dartmouth Center for Health Care Delivery Science

About lifestyle

About medication adherence

About accessing services

About possible planned

interventions

Decision Tools

Low Back Surgery:

1/3 reported significant decrease in pain

Shared Decision Making Tool


Low Back Surgery:

60% reported no difference in pain



Low Back Surgery:

10% reported worsening pain or neurologic compromise after surgery



Coulter, Collins. Making shared decision making a reality in the NHS. Kings Fund July 2011

Starting an SSRI Antidepressant

Antidepressa

nt Effect

Serious Side Effects

Days

Perc

en

tage

Do Decision Aids Work?Cochrane Review of 51 RCT’s

•Improve Patient Involvement

•Improve Patient Knowledge•Balance, accuracy, consistency of information

•Clarify Patient Values

•Reduce Decisional Conflict, Regret• Improve Realistic Expectations

•Lower Decisional Conflict

•Decrease Number who are undecidedO’Connor, Cochrane Collection, 2006

Additional Findings from Cochrane•Impact on Decisions

•Dampens enthusiasm for invasive interventions

•Variable impact on preventative options

•Minimal/No Impact•Satisfaction

•Anxiety

•Health Outcomes

O’Connor, Cochrane Collection, 2006

PSA Screening Choice

Dartmouth Center for Health Care Delivery Science

Choice(n=801)

Before vs. After Video

UnsureNo PSA ScreeningPSA Screening

27% → 16%25% → 41%49% → 43%

Changed their Minds

29%

p

<0.1

Decision Aids reduce rates of discretionary surgery

RR=0.76 (0.6, 0.9)

O’Connor et al., Cochrane Library, 2009

SDM creates ‘Patient Activation’

Shared Decision Making&Palliative Care

Relief from Suffering

Focuses on Patients with Serious & Complex IllnessShare Honest Information with Patients and Families

What is Palliative Care?

Physical

Emotional

Social

Spiritual

Relief from Suffering

Defining Palliative Care

•Cancer•Cardiomyopathies•Cerebrovascular Accident•Chronic Obstructive Pulmonary Disease•Chronic Kidney Disease•Congestive Heart Failure•Coronary Artery Disease•Cirrhosis and Hepatic Failure•Alzheimer’s Disease and other Dementias

Serious & Complex Illnesses usually begin with ‘C’

•Can be offered to any person with Serious or Complex Illness

•Not reserved for Seniors or the Dying

•Non-Hospice Palliative Care

•Home and Community Based Palliative Care

Palliative Care

•Pain and symptom management•The safe and effective use of opioids•Skilled communication with patients and their families

•Determining goals of care•Leveraging the health delivery system to help patients and families meet goals of care

•Ensuring care is seamless, well-coordinated and well-communicated across multiple settings over time

Core Practices of Palliative Care:

Center to Advance Palliative Care (CAPC)

L. Hospitium,

hospitality, literally “house and guest“

Home based palliative care

Targets those with

<6 months life expectancy

Hospice

Palliative Care Teams

Sometimes Palliative Care is provided by specialized interdisciplinary teams

But not always…

•Many decisions to consider

•Pathway forward can seem ambiguous

•Lack of medical evidence

•Personal values and goals sometimes outweigh medical evidence and scientific findings

When facing Serious/Complex Illness:

Hospitalized patients often want three things from their health care team:

• Technical competence

• Presence and bearing witness to illness (listening)

• A sense that ‘someone cared’

Local Data

QA Survey, Hillcrest Medical Center

SDM complements Palliative Care • Family

Meeting

• Explore Goals and Values

• Help make difficult decisions

• Documentation

Challenges of SDM in Palliative Care• Poor availability of Decision Tools

• Stakes are high

• Lack of Provider Training

• Potential for provider-patient Conflict

• Non-conducive Physical Environment

Atul Gawande, MD

Peg’s StoryPeg is a woman in her early 60’s who’d been treated in 2010 for a rare cancer requiring chemotherapy, radiation and radical surgery. After time, Peg was told the treatment wasn’t working. It had impaired her immune system, making her sick with fevers and an infection.

Imaging showed that her original cancer had come back in her hip and liver. The disease caused immobilizing hip pain and made her incontinent. That was when she checked into the hospital. She didn’t know what to do.

From: Gawande, A. Being Mortal: Medicine and What Matters in the End. New York: Metropolitan Books, 2014

Peg’s Story“What had the doctors said they could do?” I asked.

“Not much,” she said. She sounded utterly hopeless. They were giving her blood transfusions, pain medications and steroids for the fevers caused by her tumor. They’d stopped giving her chemotherapy.

She asked “What do we think should happen now?”

Her condition was incurable by established means. She could press her doctors for other treatments, experimental therapies, anything with even a remote chance of keeping her going, no matter what? Or Peg thought: “should I give up”?


Peg’s StoryNeither choice seemed right.

In medical practice, we’ve failed to recognize that people have priorities; just living longer isn’t enough. And, the best way to learn about peoples’ priorities is to ask about them. Hence the wide agreement that payment systems should enable health professionals to take sufficient time to have such discussions and tune care accordingly.

I also discovered that the discussions most successful clinicians had with patients involved just a few important questions that often unlocked transformative possibilities:


Peg’s Story(1)What is their understanding of

their health or condition?

(2)What are their goals if their health worsens

(3)What are their fears?

(4)What are the trade-offs they are willing to make and not willing to make?


Question 1What is the person’s understanding of their health or condition?

•What have they been told about their condition?

•What is the assessment of their understanding?

•What role do caregivers play?

•What options exist going forward?

•Does the person understand the benefits and burdens of each option?

Question 2•What are the person’s goals if their health worsens?

•What would be most important if their health were to deteriorate?

•What significant accomplishments/tasks remain unfinished?

•How would the person want their health care team to respond to their needs?

•Who would the patient want to be with them on their ‘care journey?’

Question 3•What are the person’s fears?

•Can the person list their fears?

•Is talking about fears overwhelming?

•Are they afraid of receiving bad news?

•Do they fear suffering?

•Do they fear being dead?

•Do they fear being a burden on others?

•Do they fear being alone?

•What are the caregiver’s fears?

Question 4•What are the trade-offs people are willing to make and not willing to make?

•Under what conditions would hospitalization, be acceptable? Unacceptable?

•Under what conditions would invasive procedures, be acceptable? Unacceptable?

•What would make longevity more important than comfort?

•What would be worse than dying?

•What priorities must be upheld – no matter what?

New Recommendation:• Use SDM techniques to address five

fundamental questions:

• What is the person’s understanding about their condition?

• What are their goals?

• What are their fears?

• What are the identified trade-offs?

• How are the answers to these questions documented?

An example of interpretive shared decision making. The Clarehouse design team described their vision and we as architects designed their vision.


Clarehouse Social Hospice is an alternative collaborative partner to traditional medical hospices. The Social Hospice provides a loving home to dying individuals in caregiver crisis as a charity based services. This is one of four in the United States and it is located in Tulsa, Oklahoma.


Clarehouse has measured positive outcomes according to recent research at the University of Tulsa in Tulsa, Oklahoma


Summary:The ultimate goal is to create a space for Palliative Care where the patients and their

families are in a homelike environment, have freedom to move about and have adequate open space to be together or alone. The ultimate vision is a space that becomes a place

where patients and their families will WANT TO STAY until it is time for them to leave.

Summary•Our health delivery system is providing suboptimal care

•SDM is a patient-centered approach that helps patients receive all they care they need and no less, and all the care they want and no more

•Palliative Care is the art and science of relieving suffering and sharing honest information

•Providers can apply SDM techniques when approaching patients with complex and serious illness

Jeffrey Alderman, MD, MS Clinical Associate Professor OU School of Community Medicine Connie...

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