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					     Transforming End-of-Life Care
            CARE Recommendations
       in Skilled Nursing Facilities of Life
         Compassion & Respect toward the End

                 Steps and Tools
         to Redefine Healing and Hope
CARE Recommendations:
Steps and Tools in Nursing Homes
to Redefine Healing and Hope
in Nursing Homes
                               Aging Services May 2010   1
Michael GuntherMaher, MD, FACP
 Medical Director, Hospice
 Kaiser-Permanente Sacramento / Roseville

Bonnie Darwin
  Executive Director
  California Culture Change Coalition

                                        Aging Services May 2010   2
       Bucket List Exchange
Find 1-2 persons you don’t already know
Exchange names, facilities, time in this

Share 1 thing you hope to do before you
  die, and why you want to do it

                              Aging Services May 2010   3
When it’s my turn….

           Aging Services May 2010   4
Sudden death, unexpected cause

< 10%, MI, accident, etc
      Health Status

                             Aging Services May 2010   5
Steady decline, short terminal phase

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Slow decline, periodic crises,
       sudden death

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               Dementia/Frailty Trajectory


     Low                                                    Death
      Onset could be deficits in    Time   Quite variable -
      ADL, speech, ambulation              up to 6-8 years

                          Source: Joanne Lynne

                                            Aging Services May 2010   8
Aging Services May 2010   9
                Dying in America
10% will die suddenly from accidents, cardiac arrest and
  other abrupt life-ending events
70% will die of protracted chronic illness
   • Cancer
   • Heart disease, lung disease
   • Organ system failure: kidneys, liver, etc.
20% will die of progressive neurologic failure
   • Alzheimer’s and other dementias
   • Stroke

                                           Aging Services May 2010   10
                    Where do we die?
                          1989                     2001

  Home                    13%                      27%

  Hospital                58%                      47%

  SNF                     21%                      21%

Source: Center for Gerontology and Health Care Research at Brown Medical
School, Brown University. Atlas of Dying. Joan Teno, MD

                                                  Aging Services May 2010   11
    EoL in Nursing Homes
61% of those >85 yo who are severely impaired live in
22% of all deaths in 2003 occurred in nursing homes
42% of NH patients were hospitalized during last month
of life
67% of patients with dementia die in NH
272 days: national average LOS in NH

       Source: J Pall Med. 2010: Vol 13, No 2; 111-115

                                        Aging Services May 2010   12
   ECHO (Extreme Care, Humane Options)
   Nursing Facility Recommendations 2000

ECHO LTC Task Force: health care professionals,
LTC associations, state agencies and consumers
“…to facilitate institutional processes, enhance
provider competence and strengthen
organizational relationships to improve…advance
care planning…(and) palliative care services”

                                Aging Services May 2010   13
         ECHO Nursing Facility
         Recommendations 2000

Palliative Care shares priority with restorative and
supportive care

Discussions about EoL care are routine
Residents participate in care planning

                                Aging Services May 2010   14
           ECHO Nursing Facility
        Recommendations 2000: How?
Strategies to accomplish each outcome were

   Tools offered in appendix

   Statewide dissemination process

                                      Aging Services May 2010   15
How has NH quality of care
   evolved in 10 years?
Increasing focus on the post-acute role
  • Greater presence of medical staff
  • Regular focus on care processes
  • NCQI credentialing
Relationships with Health Systems
  • Prevalence of contracts for post-acute
  • Presence of medical and care-coordination
                                 Aging Services May 2010   16
      How has NH EoL care
       evolved in 10 years?
Preferred Intensity of Treatment (PIT) forms have
become standard
EoL training of many NH staff
  • Respecting Choices curriculum
  • Informal dissemination
Increased focus on pain management

                                Aging Services May 2010   17
 Some things have not changed in 10
Ever more patients will die in SNFs
  • Fresh from acute care, complex & dazed
  • Long term residents
  • Some admitted expressly to die there
Most have complex needs for comfort
  • Pain and other symptoms are common
  • Unrecognized spiritual needs
  • Complex social dynamics

                                 Aging Services May 2010   18
                       Not Pain…

45-83% of NH residents have under-treated pain
26% of residents in daily pain from cancer receive no
Despite increased focus, there is little evidence that
  this is improving

    Source: The Gerontologist. 2006: Vol 46, No 3; 325-333

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Not Concerns about NH Care . . .

CMS OSCAR Survey data 2005
38%: quality of care
30%: dignity not respected

                             Aging Services May 2010   20
         A real human being…
Mrs. C is 83, caucasian
Long history of heart failure, diabetes, glaucoma
Widowed 4 years ago, depressed off/on since then;
  lives alone; a son nearby checks on her, dtr lives
  in Oregon
Hospitalized with UTI, delirium, exacerbated heart

                                Aging Services May 2010   21
         A real human being…
Admitted to SNF for PT, IV abx
Full code, no POLST done in hospital
On admission son indicates “do everything”, PIT
  completed accordingly

                               Aging Services May 2010   22
          A real human being…
During first 5 days at your SNF:
  • Poor appetite
  • Refuses PT & OT twice
  • Complains of pain “all over”

On day 6 she becomes confused, is coughing and

                                   Aging Services May 2010   23
         A real human being…
She is sent 911 to the hospital
Admitted for 5 days with probable aspiration
Returns to SNF with NG tube
Orders include IV abx, PT

                               Aging Services May 2010   24
          A real human being…

Physician’s assessment
  • Probable underlying dementia
  • High risk for future infection
  • Poor motivation to participate in care

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  A real human being…in your SNF
What strengths does your SNF bring to these
Where is your SNF deficient or ineffective?
How hopeful are you that things could improve?
How committed are you that things will improve

                                Aging Services May 2010   26
SUPPORT: Study to Understand Prognoses and
 Preferences for Outcomes and Risks of Treatments

“…Changes in care at the end of life are not going to
happen with marginal adjustments in the way we
organize services. It takes a much more sustained effort
on many fronts to refocus priorities for the care of the
critically ill. Changes in social norms, professional
values, and social priorities all need to be part of the

          Joanne Lynne, PI for SUPPORT

                                   Aging Services May 2010   27
          Barriers to Quality EoL Care:
            Conflicted Care Plans
“Don’t ask, don’t tell” re dx & prognosis
“There’s always hope” despite likely outcomes
Many find it difficult to forego remedial care even in the
  face of misery and futility
Hospital personnel often don’t understand what works in
  the NH environment

Result: care plans fail to address the likelihood of decline
  and the priority of comfort

                                      Aging Services May 2010   28
        Barriers to Quality EoL Care:
        Unsteady Medical Presence
Patients and families still rely on doctors to give
  prognosis and advice
Most NH staff are reluctant to give guidance unless
  supported by the physician
NH MDs/NPs/PAs are typically over-worked and over-

Result: they may not be available to guide sick and
  frightened patients/families at EoL

                                    Aging Services May 2010   29
     Barriers to Quality EoL Care:
 Uncommitted Symptom Management
“This is what the doctor ordered”
“It’s not time for your next dose”
Concerns about drug dependency
Poorly-evolved metrics

Result: poor symptom management, lack of trust by
  patients and families

                                     Aging Services May 2010   30
             Barriers to Quality EoL Care:
              Cultural Forces in NH
Universal cultural forces
   •   Pervasive expectation to provide remedial care
   •   Limited expertise in EoL care
   •   Regulatory and licensing issues
   •   Financial issues
Peculiar / local cultural forces
   •   Ethnic biases / preferences of staff
   •   Patient characteristics
   •   Partnering health plans and providers
   •   Work environment psychology
                                               Aging Services May 2010   31
Creating the New Paradigm for EoL
      Care in Nursing Homes

       The current health
care system is perfectly
poised to maintain the
status quo of EoL care in
nursing homes.

                            Aging Services May 2010   32
          Creating the New Paradigm:
    Health Systems & HC Providers
Move resources together with patients
EoL care is the dominant need in NH
   • Give equal priority to palliative care as well as
     remedial care
Innovate the clinician’s role
   • Teach, family meetings, group visits, POLST

                                        Aging Services May 2010   33
        Creating the New Paradigm:
           NH Nursing staff
Own responsibility for pain and symptom management
Initiate conversations
  • “How is it going”
  • Benefits of palliative care plans (even though they
    should have happened earlier)
Re-create the NH as a place where a “good death” can
  be realized

                                      Aging Services May 2010   34
       Creating the New Paradigm:
      Regulatory and Legal Milieu
Some regulations work against quality EoL care
   • weight loss, failure to thrive
   • “highest practical level of function” may also be a
     spiritual or psycho-social domain, not just physical
Trends in “elder abuse” lawsuits promote
  defensiveness and a “life at all costs” approach to all
  NH care

                                       Aging Services May 2010   35
We did the best we could with
what we knew, and when we
knew better, we did better.
            Maya Angelou

                    Aging Services May 2010   36
 CARE (Compassion and Respect Towards
 the EoL) Recommendations: 2010

ECHO LTC Task Force reconvened 12/2008 to ask:
  • Is the state of EoL care in NH where it needs to be?
  • What have the ECHO LTC recommendations
  • Is there merit is creating updated or new
    recommendations, and what would be goal of doing

                                    Aging Services May 2010   37
 CARE (Compassion and Respect Towards
 the EoL) Recommendations: 2010
Task Force convened in 2009
  • CHCF provided sponsorship
  • CCCC directed process
Similar composition as ECHO LTC Task Force, some
  returning members
Recommendations assembled during 2009 and finalized
  early 2010

                                Aging Services May 2010   38
             CARE Recommendations:
    Vetting Process: CCCC Partners
American Association of Retired Persons (AARP)
Alzheimer’s Association
California Advocates for Nursing Home Reform (CANHR)
Laguna Honda Hospital
San Diego Hospice
California Department of Veterans Affairs
Woodland Healthcare
Santa Clara Valley Medical Center
Sutter Auburn Faith Hospital
On Lok Lifeways
Motion Picture & TV Fund
Archstone Foundation
American Medical Directors Association

                                            Aging Services May 2010   39
 CARE (Compassion and Respect Towards
 the EoL) Recommendations: 2010
Science of EoL care is advanced
Effective communication tools exist
Legal, regulatory and financial barriers to good EoL
   care are largely (if incompletely) resolved

                                    Aging Services May 2010   40
 CARE (Compassion and Respect Towards
 the EoL) Recommendations: 2010
Build upon existing foundations
  • Original ECHO recommendations
  • Current NH policies & best practices
Emphasize empowerment of NH-based personnel
State of the Art tools, eg POLST
Multi-pronged vetting and dissemination processes

                                   Aging Services May 2010   41
CARE (Compassion and Respect Towards the
 EoL) Recommendations: 2010
Designed to be used by NH Staff
Tips for caring for the physical, emotional, psych-
  social and spiritual needs
Establishes processes and rituals that acknowledge
  the sacredness of the human spirit
Creates a culture of identifying and honoring the
  individuals needs and preferences

                                  Aging Services May 2010   42
 CARE (Compassion and Respect Towards the
   EoL) Recommendations: 2010
Step 1: Advance Care Planning
  •   Emphasizes role of NH in owning ACP
  •   POLST
  •   Grounded in “Person Centered”
  •   Establishing a sense of trust through
          Giving realistic information
          Encouraging expression of wishes
          Policies to solicit, document, and honor expressed wishes

                                             Aging Services May 2010   43
CARE (Compassion and Respect Towards
the EoL) Recommendations: 2010

Step 2: Common EoL Care Issues
  • When to perform EoL care planning
  • Pain and symptom management
  • Reducing unwanted hospitalization through
        Consistent assignment of personnel
        Helping families to understand and cope
        Effective communication through out

                                        Aging Services May 2010   44
     Trust: the Magic ingredient
Trust =
      Goodwill x Time*
Goodwill =
      Other-centeredness x Competence
Competence =
      Expectations x Results

*the only thing you don’t have control over
                                        Aging Services May 2010   45
Trust: Demonstrate Competence
Exceed expectations by initiating conversations
  about Goals
  • Who will be accountable for this?
  • What skills do these people need for talking with
    patients, families, docs?
Get results
  • Document completion: POLST, DPA
  • Assure that patients / families get informed about
    prognosis, alternatives
  • Aggressive pain & symptom relief

                                  Aging Services May 2010   46
Trust: Demonstrate Other-Centeredness
Be curious
  • What’s their story?
  • What do they know?
  • What do they hope for?
Be their partners when it comes to achieving the
  patient’s goals
  • It’s your job to provide good care
  • It’s your privilege to share life together with other
    human beings

                                    Aging Services May 2010   47
Trust: Minimize Disappointments
Take responsibility for addressing mistakes and poor
  results, even if it isn’t your fault
Be honest about the challenges you all face in
  addressing complex needs
Invite collaboration and accountability
  • Physicians, NPs, pharmacists, MSWs, chaplains,
    ombudsman, etc.
  • Families

                                  Aging Services May 2010   48
     Competent Conversations:
            Make them normative
Assign and empower a clinical expert
Expect them to happen
  • By when?
  • By whom?
  • How?
Expect appropriate documentation
  • Narrative in clinician notes
Expect collaboration
                                   Aging Services May 2010   49
     Competent Conversations:
             Care Plans vs. Goals
Goals belong to human beings, and describe what
 they hope for
   • This is always contextual
Care plans are created by professionals to address
  and respect the patient’s goals
The prevalent mistake is to think that, if we have a
  care plan, we have enough.

                                 Aging Services May 2010   50
  Competent Conversations:
            Leverage the moment

Patient / family express dismay, confusion or despair in an
    end-stage scenario
Expressions of loss, suffering, confusion, wish to die
Severe symptoms: pain, SOB, N/V
Repeated hospitalizations
Prolonged hospitalization

                                      Aging Services May 2010   51
     Competent Conversations:
         Find out where they’re at
“What do you know?”
  • You’d be surprised!
  • Extremely useful for your opportunities
“What has this experience been like?”
  • Disease and illness are more than mere
    biochemical or physiologic aberrations
  • Communicates that you care about them
“What are you expecting? Hoping for?”
  • Critical for identifying goals.

                                      Aging Services May 2010   52
     Competent Conversations:
            Clarify what they need
“What would you like to know?”
 “What could we do that would help?”

Offer suggestions and see if they resonate
  • Make sure you deliver!

                                 Aging Services May 2010   53
  Competent Conversations:
               Language to avoid
“There’s nothing more we can do”

“Let’s just make your dad comfortable”

“You’re dying”

                              Aging Services May 2010   54
             POLST (Physician Orders
      for Life-Sustaining Treatment): What?
Long used in Oregon
Became law January 1, 2009
Physician orders
  • Not valid unless signed by MD and patient
Designed to be honored across venues (SNF, home,
Replaces PIT, Pre-hospital DNR
A tool for Competent Conversations

                                   Aging Services May 2010   55
                  POLST: Why?
Clearly articulate a care plan concerning EoL issues
   • CPR
   • Intensity of Medical Care
   • Tube feedings
Establishes the standard that these issues will be
  clarified for patients
   • May be news to health care professionals
   • May be news to patients and families

                                  Aging Services May 2010   56
                 POLST: Who?

Anyone on the healthcare team
Meant to reflect the physician’s recommendations
 based on the patient’s condition, prognosis and
Only as useful as the conversations it is based upon

                                 Aging Services May 2010   57
               POLST: When?

When entering an SNF
When going home, especially for Hospice
When a patient’s condition is expected to remain
 poor, deteriorate, or end in death

                                Aging Services May 2010   58
                  POLST: How?
Make it your normal procedure to complete
Listen first
Suggest that the patient / family is telling you that
   they prefer _______.
Confirm or discuss.
Say “you can change your mind later if you wish.”
Ask if they have questions.

                                   Aging Services May 2010   59
              POLST: Problems
No physician involvement in the conversations
A signed, blank form

                                Aging Services May 2010   60
 The most important issue NOT
       addressed in the
    CARE recommendations
What are the pivotal (fulcrum) issues in your SNF,
 where leverage could be applied to effect a

Is there anyone in your SNF willing to wield the

                                Aging Services May 2010   61
             Leverage Points:
      a very short list of possibilities
Assign an RN / MSW to learn, teach and oversee
  EoL conversations
Develop a protocol for having urgent EoL
  conversations in high risk patients
Invite a physician to do an in-service on pain
Find a chaplain who’ll come often
Hold staff debriefings following difficult deaths

                                 Aging Services May 2010   62
               A Good Death
Consistent with resident and family wishes, beliefs
  and values
Free from Suffering
Provides an opportunity for meaning and
Acknowledges the emotional connection between
  staff and residents

                                 Aging Services May 2010   63
CARE (Compassion and Respect Towards the
  EoL) Recommendations: 2010

Step 3: Dying Well in the
   • Practical considerations
   • Rituals for residents
     and staff


                                Aging Services May 2010        64
        Step 3 – Dying Well
The sacred happens
 everyday in nursing homes

                       Aging Services May 2010   65
   Human Development at the
         End of Life
Did I make a difference?
Closure to relationships
How will I be remembered?

                 Aging Services May 2010   66
           As death nears . . .
Put a door hanging such as a rose or butterfly to
  alert staff and visitors that the resident is at the
  end of life.

Rid the space of clutter, especially unnecessary
  medical equipment.

Diffuse outside noise and distractions.

                                     Aging Services May 2010   67
          As death nears . . .
Soften lighting.

Provide the presence of something beautiful or
  meaningful to the resident.

Comfortable seating for family or friends.

Provide privacy.

                                Aging Services May 2010   68
Does not have to be associated with a particular
 religious or cultural custom.

Can be anything that serves the residents and the
 people who live, work, and visit the home.

As long as the practice is what the resident wants
  or would have wanted.

                                  Aging Services May 2010   69
Consider washing the body and covering it with a
 beautiful shroud or a special quilt or the
 American flag.

Use a chime to notify that a death has occurred.

Allow time to pay final respects.

                                    Aging Services May 2010   70
Simple prayers and religious or secular

Put the resident’s belongings in an attractive
 box to return to family members.

Staff could serve as pallbearers with family
  members as they escort the body to the

                                Aging Services May 2010   71
                      The last word?
“…Old habits turned out to be not really that uncomfortable, and new
  patterns were not really that much desired. Most people in such
  hospital settings, involved with critically ill patients, are not convinced
  that they are doing anything wrong. They are coping with bad
  situations in time-honored ways. They are comfortable with the
  inadequacies of present practices, even when those inadequacies are
  acknowledged, and they are unsettled at the prospects of new and
  untested patterns.”

                          Joanne Lynne, PI for SUPPORT

                                                   Aging Services May 2010      72
For more information on the CARE Recommendations,
                    contact the
   Coalition for Compassionate Care of California
             1215 K Street, Suite 1917
              Sacramento, CA 95814
                  (916) 489-2222

                                   Aging Services May 2010   73

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