TWG

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TWG6End-of-Life Subgroup

• Heather Arthur, Martin Fortin, George Heckman,
  Jonathan Howlett, Louise Morrin, Judith Shamian

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Process

• TWG6 Meeting Apr 30- May 1
• Identified issues
• Developed recommendations
• Teleconference EoL subgroup 16 Jul
• Process
• Division of labour
• Resources posted on website
• Draft prepared August 07
• Circulated to EoL subgroup- Sept 07
• Feedback incorporated in current draft

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Outline

• Chronic Care Model EoL care
• Issues in EoL care in CVD
• Review of Strategies
• Recommendations

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Chronic Care Model
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Issues

• Terminology
• HF in elderly
• Prognostic uncertainty
• Care context
• Communication
• Inter-disciplinary approaches
• Knowledge gaps
• Professional education
• Ethical considerations
• Resources

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Terminology

• Perception EoL care synonymous with palliative
  care
• Palliative care alleviate physical, emotional,
  psychosocial, and spiritual symptoms
• Usually applied to cancer, increasingly seen
  appropriate for end-stage HF
• Specific challenges in HF
• Prognostic uncertainty, erratic trajectory,
  elderly with multiple comorbidities

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Proposed Terminology

• Care of Advanced HF
• Advanced care planning
• Palliative care
• Hospice care
• Advanced directives
• Focus on decision-making planning

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HF in Elderly

• Majority of HF pts are elderly
• Many suffer multiple co-morbidities
• Anemia, CRF, diabetes, cognitive impairment
• Inc. hospitalization mortality, progressive
  disability
• Effective programs
• Self-management of co-morbidities
• Care-giver self-management skills
• Transitional care interventions

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Prognostic Uncertainty

• Makes discussion of patient preferences complex
• Predicting mortality difficult
• High incidence of sudden death
• Use of implantable devices

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Theoretical EoL Trajectories
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Care Context

• Focus in cardiac care on preservation of life
• Environment where goal is cure
• Barrier to conversations on care of advanced HF
• Lack of emphasis on EoL issues

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Communication

• Studies show
• Patients do not recall receiving info about their
  condition
• Dont feel involved in decision making about
  their illness
• Poor patient-physician congruity re care
  preferences
• Impede access to advance HF care planning

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Communication Required

• Sensitive provision of information
• Culturally appropriate discussions
• Communicate preferences across health care team
• Preferences clearly documented (EHR)
• Education of health care providers on how to talk
  about the end of life

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Interdisciplinary Approaches

• Discipline-specific interests emerging
• Geriatric medicine, palliative care, cardiology
• Need linkages to improve continuity of care
• Enhance role of generalists and APN, supported by
  specialists
• Inter-disciplinary research innovative
  solutions (e.g. CARENET)

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Knowledge Gaps

• Effectiveness of symptom identification
  management
• Effective content and process of discussions
  about disease progression and advanced care
• When, how and where patients should plan and
  receive advanced HF care
• Analysis of demographic, geographic, cultural
  variables

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Professional Education

• Few post-secondary institutions offer EoL care
  training programs
• Need for mandatory curriculum on advanced HF care
• Emphasis on
• Sensitive effective communications
• Management of complex co-morbidities

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Ethical Considerations

• Educate on ethical decision making models
• Integrate ethical decision making framework in
  advanced HF care planning
• Consult ethicist or ethics committee

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Resources

• Disparity in allocation of EoL resources
• Palliative care funding ? demand
• Cost of hospice care, drugs, equipment and
  caregiver opportunity costs force some into
  hospital
• Need investment in community-based care and home
  care
• Caregiver supports

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Review of Strategies

• Canadian Cardiovascular Society
• 2006 HF Guidelines
• 2002 Consensus Conference CVD in Elderly
• Pallium Project
• CIHR-sponsored research interest group
• Senate sub-committee

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Guidelines

• Include EoL care-specific guidelines
• CCS 2006 HF Update
• CCS 2002 HF in Elderly

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CCS 2006 Ethical and EoL issues

• Recommendations
• Patients with heart failure should be approached
  early in the heart failure disease process
  regarding their prognosis, advanced medical
  directives and wishes for resuscitative care.
  These decisions should be reviewed regularly and
  specifically after any change in the patients
  condition (level I, grade C).
• A substitute decision-maker (proxy) should be
  identified. (level I, grade C).

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CCS 2006 Ethical and EoL issues

• Where possible, a living will should be discussed
  with patients to clarify wishes for end-of-life
  care (level I, grade C).
• As patients near the end of life, physicians
  should readdress goals of therapy balancing
  quantity and quality of life, with a shift of
  focus to quality of life. Palliative care
  consultation should be considered (level I, grade
  C).
• Psychosocial issues (eg, depression, fear,
  isolation, home supports and need for respite
  care) should be re-evaluated routinely (level I,
  grade C).

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CCS 2006 Ethical and EoL issues

• Caregivers of patients with advanced heart
  failure should be evaluated for coping and degree
  of caregiver burden (level I, grade C).

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CCS 2006 Practical Tips

• Engage patients and families in open and honest
  discussion about the prognosis of heart failure,
  including possible modes of death.
• Sample living wills are available
• Provincial variations exist regarding the
  legality of the various components of advanced
  care directives
• Effective communication and documentation is
  essential to ensure continuity of care between
  inpatient and outpatient settings.

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CCS 2002 CVD Elderly

• Initiate discussions about end of life early in
  the illness trajectory of elderly patients with
  cardiac disease. (Class IIa, Level of Evidence B)
• Provide patients and their families with
  information about cardiac disease and its
  progression (appropriate to their language and
  reading ability). (Class IIa, Level of Evidence
  B)
• Lobby for access to palliative and hospice
  services for elderly patients with cardiac
  diseases in the final stages of their illness
  trajectory. (Class IIb, Level of Evidence C)

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CCS 2002 CVD Elderly

• Promote research on the issues elderly patients
  with cardiac diseases and their families face at
  the end of life. (Class IIb, Level of Evidence C)
• Promote research on interventions that can
  improve the quality of life for elderly patients
  with cardiac diseases (and their families) in the
  final stages of their illness trajectory. (Class
  IIb, Level of Evidence C)

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Recommendations (1)

• Supportive care planning should be incorporated
  into all phases of a cardiovascular management
  program and delivered in a patient-centric and
  socially and culturally sensitive manner. This
  should encompass symptom and pain management
  advanced care planning palliative care when
  indicated advance directives caregiver concerns
  and burden consideration of co-morbidities, as
  well as geriatric issues of frailty, functional
  impairment, and cognitive impairment and
  achievement of optimal functional status.

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Recommendations (2)

• Curriculum in advanced HF care and sensitive
  patient and family communication for all health
  care disciplines should be assessed across
  clinical health science education institutions in
  Canada. Where gaps exist, curriculum development
  should be recommended.

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Recommendations (3)

• The patient health record, including the
  electronic health record, should contain
  information on patient wishes regarding level of
  care and supportive care preferences and the
  health care teams decision-making around care,
  in order to facilitate communication and seamless
  care provision.

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Recommendations (4)

• Resources should be allocated to increase
  provision of adequate and comprehensive advanced
  HF care in the community.

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Recommendations (5)

• The Heart Health Strategy should fund research
  relating to issues around advanced HF care.

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Recommendations (6)

• Current cardiovascular management guidelines
  should be assessed, and, if necessary, modified
  to clearly explicate comprehensive supportive and
  advanced HF care practices.

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• DISCUSSION