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“Are the Goal Posts Moving?”. From Cure to Palliative Care: Patient Perspectives -Karen Levy, RN, BSN . Goal : An end toward which effort is directed. :achievable, reasonable :can be time limited :mutually agreed upon. Objectives. At the end of this session you will:

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are the goal posts moving

“Are the Goal Posts Moving?”

From Cure to Palliative Care:

Patient Perspectives

-Karen Levy, RN, BSN

slide3
Goal: An end toward which effort is directed

:achievable, reasonable

:can be time limited

:mutually agreed upon

objectives
Objectives

At the end of this session you will:

  • Describe the transition process.
  • Know research findings about patients perspectives of their transition to palliative care.
  • Describe how these findings can be applied in the nursing practice setting.
the question
The question

Is there research evidence to support best nursing practices for the care of patients making the transition from cure to palliative care?

slide6
The transition process requires not only that we
  • bring a chapter of our lives to conclusion, but
  • that we discover what ever we need to learn for
  • the next step we are going to take. We need to
  • stay in transition long enough to complete this
  • important process, not to abort it through
  • premature action.
          • Bridges, 1980
transition
Transition

Types

Conditions

Responses

Patterns

Properties

Nursing therapeutics

Meleis et al. 2000

slide8
Type
  • Health/illness
  • Developmental
slide9
Properties
  • Awareness
    • Of diagnosis/prognosis
  • Engagement
    • Information needs
    • Exploring treatment options
  • Time Span
    • Variable
  • Critical Points and Events
    • Advancing symptoms/increased debility
slide10
Conditions: Facilitator & Inhibitor
  • Personal
    • Meanings
    • Cultural beliefs & attitudes
    • Socioeconomic status
    • Preparation & knowledge
  • Community
  • Society
slide11
Patterns of Response
  • Process
    • Feeling connected
    • Interacting
    • Developing confidence & coping
  • Outcomes
    • Mastery
    • Integration
slide13
Active Disease Treatment

Palliative Care

Relationship between active disease treatment

and palliative care

slide14
Transition

Treatment

Palliative Care

the process
The Process

Systematic literature review

inclusion criteria
Inclusion criteria
  • Cancer patients’ perspective
  • Palliative patients’ perspective
  • Needs of patients with advanced cancer
  • Cancer patients and end of life issues
the findings
The findings
  • 11 primary research articles
  • 3 categories
    • Experience of receiving the news
    • Needs assessment: information needs and expectations of care
    • Experience of coming to terms with the news
experience of receiving the news
Experience of Receiving the News
  • Symptoms ‘took over’
  • Pace and timing could be rapid
  • Little involvement in decision making

Ronaldson & Devery, 2001

experience of receiving the news1
Experience of Receiving the News
  • Sense of well being, security and individual strength
  • Previous knowledge, ability to participate

Friedrichsen et al. 2000(a)

  • View of the doctor
  • Words used to convey news
          • Friedrichsen et al. 2000(b), 2002
experience of receiving the news2
Experience of Receiving the News
  • Pt. knew it was bad news based on non-verbal
  • Believed remission was unlikely
  • Appreciated life more
  • Range in emotion from hopeful – hopeless
          • Mahon & Casperson, 1997
needs assessment
Needs Assessment
  • Patients with progressive disease (treatment changes) experienced
    • Pain , weakness
    • “No one to talk to”
    • “No one who understands”
    • “Being treated differently”
    • Spiritual /marital concerns
        • Dudgeon et al. 1995
needs assessment info needs
Needs Assessment: Info Needs
  • Receiving palliative RT wanted info:
    • Pain control (75%)
    • Management of weakness & fatigue (58%)
    • Management of shortness of breath (52%)
    • What causes cancer (48%)
    • How to access home care resources (46%)
          • Wong et al. (2002)
slide23
Patients understanding

Physicians understanding

Prognosis and treatment plans

needs assessment info needs1
Needs Assessment: Info Needs
  • 118 patients with incurable cancer
    • 57% knew life expectancy
    • 44% knew alternatives to ca tx
    • 36% knew benefit of tx for qol
    • 30% were offered choice in tx
    • Less than 10% were validated
          • Tattersall et al 2002
needs assessment expectations
Needs assessment:expectations
  • All eligible for hospice but expected info:

89 % - new treatments

72% - likelihood of cure

69% - options if tx not successful

Kutner et al. 1999

expectations
Expectations
  • Cancer patients w progressive disease (n=47)
    • 44% thought they were stable or in remission
    • 26% did not know disease status
    • 14 % were correct

Sapir et al 2000

expectations1
Expectations
  • In palliative patients whose treatment had failed and care goals were comfort
    • 32% considered goal to be cure or life prolongation
          • Kutner et al 1999
expectations2
Expectations
  • Study of cancer patients understanding of treatment (n=100)
    • 33% with mets localized
    • 34% treated as palliative cure
    • 10% treated for cure palliative
          • McKillop et al. 1988
expectations3
Expectations
  • Of oncologist and oncology nurses
    • Patience, tact, understanding of psychosocial concerns
    • Trustworthiness & reliability
    • Knowledge re: pain management, chemo,
    • Diagnostic skills
    • Treatment focus = supportive focus

Sapir et al, 2000

coming to terms with the news
Coming to Terms With the News

6 themes:

  • Pain & symptom management
  • Clear decision making
  • Preparation for death
  • Completion
  • Contributing to others
  • Affirmation of the whole person
    • Steinhauser et al. 2001
coming to terms with the news1
Coming to Terms With the News
  • Naming someone to make decisions
  • Knowing what to expect
  • Financial affairs in order
  • Treatment preferences in writing
  • Physician comfort in talking about death
implications for best practice
Implications for Best Practice

Early assessment and intervention

  • Symptom management
  • Communication
  • Patients’ understanding of disease status/ treatment alternatives/goals
  • End of life preparation
  • Cultural norms/socioeconomic status
implications for best practice1
Implications for Best Practice
  • Decision making

Depends on information/communication/physical state

    • May be deferred to others
slide34
Gaps
  • Geriatric population
  • Cultural factors
  • Societal factors
  • Patient readiness
summary
Summary
  • Transition is a complex process.
  • Reviewed cancer patients perspectives.
  • Implications for nursing practice.
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