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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


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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?


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  • 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


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  • Type

  • Health/illness

  • Developmental


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  • Properties

  • Awareness

    • Of diagnosis/prognosis

  • Engagement

    • Information needs

    • Exploring treatment options

  • Time Span

    • Variable

  • Critical Points and Events

    • Advancing symptoms/increased debility


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  • Conditions: Facilitator & Inhibitor

  • Personal

    • Meanings

    • Cultural beliefs & attitudes

    • Socioeconomic status

    • Preparation & knowledge

  • Community

  • Society


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  • Patterns of Response

  • Process

    • Feeling connected

    • Interacting

    • Developing confidence & coping

  • Outcomes

    • Mastery

    • Integration


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Nursing Therapeutics

?


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Active Disease Treatment

Palliative Care

Relationship between active disease treatment

and palliative care


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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)


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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


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Gaps

  • Geriatric population

  • Cultural factors

  • Societal factors

  • Patient readiness


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Are the goal posts moving?


Summary

Summary

  • Transition is a complex process.

  • Reviewed cancer patients perspectives.

  • Implications for nursing practice.


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Thankyou for being here!


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