The role of transitions to palliative care in chronic illness management
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Margaret O’Connor AM Vivian Bullwinkel Chair in Palliative Care Nursing Palliative Care Research Team, School of Nursing & Midwifery Monash University . The role of transitions to palliative care in chronic illness management. outline.

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The role of transitions to palliative care in chronic illness management l.jpg

Margaret O’Connor AMVivian Bullwinkel Chair in Palliative Care Nursing Palliative Care Research Team, School of Nursing & Midwifery Monash University

The role of transitions to palliative care in chronic illness management

Outline l.jpg

  • intersection of palliative care, the palliative approach and non-malignant illnesses;

  • palliative care policy direction around the world;

  • implications for services.

Transitions l.jpg

  • many transitions in

    • care,

    • treatment,

    • carers

    • settings of care

  • decisions about what is important and how people wish to be treated

  • not necessarily a transition “phase”, but gradual decline

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healthcare changes

  • ageing populations;

  • chronic illness increasing;

  • advances in medical science and technology;

  • advocacy for equitable access to palliative care expertise – non-cancer, older people, children, disability.

Palliative end of life care l.jpg
palliative & end of life care

  • palliative care beginnings based in cancer;

  • BUT

  • WHO definition – “…an approach that improves the quality of life of patients and their families… facing the problems associated with life threatening illness…” (2003);

  • emergent shifts occurring to broaden the care profile/reach of palliative care;

  • palliative care model has much to offer people with non-malignant illnesses from diagnosis(Connolly 2000).

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palliative care & a palliative “approach”

  • palliative care –

    • refers to specialist services;

    • required by few people;

    • offers the expert skills of a range of multi-disciplinary health providers to manage complex symptoms.

  • a palliative approach –

    • appropriate for most people at

      the end of life.

    • principles of holistic care ,

    • open communication,

    • focuses on the individual’s quality of life;

    • provided by all health professionals

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benefits of a palliative approach

  • focus on optimising function & comfort for the person and their family;

  • focus on providing support & managing symptoms;

  • emphasis on individual choice & control over management including environment of care;

  • holistic care;

  • support for family & the person, including bereavement support.

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a palliative approach to non-malignant illness.

  • should be considered on diagnosis to integrate symptom management, psychosocial & spiritual support & family care (Oliver 2002);

  • excellent symptom management throughout the whole illness journey not just at the end of life, enhances quality of life;

  • “no surprises…”

  • specialist care as required

    (Kristjanson, Toye & Dawson 2003).

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general comments

  • changes in palliative

    and end of life care;

  • developing countries –

    • advocacy a key task;

    • emphasis on cancer, HIV/AIDS, access to morphine;

  • in many countries, little attention to non-malignant illness.

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difficulties with policy

  • policy may be initiated “top down” or

    “bottom up”;

  • policy shifts not consistent inter/intra countries;;

  • policy does not always translate into practice;

  • “inclusive” or “exclusive” models of palliative care?

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UK policies

  • NICE Guidance (2004);

  • National End of Life Care Programme;

  • NHS End of Life Care Strategy (2008);

  • Gold Standards;

  • all strategies - stress needs of all patients who are dying, regardless of diagnosis.

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European Association for Palliative Care

  • EAPC taskforce - guidelines on neurological palliative care & a core curriculum on palliative care / neurology;

  • no clear statements yet, overall emphasis on all diseases regardless of diagnosis;

  • triggers to palliative care and end of life care / palliative care / neurology.

  • (Personal correspondence, Dr David Oliver Chairperson EAPC Taskforce)

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US policies

  • hospices began with care of

  • people with cancer diagnoses;

  • NHPCO policy challenged US hospices to expand services to all people with a life-threatening illness (Connor,2009);

  • 2007 – 59% patients with a non-malignant diagnosis;

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US policies (cont’d)

  • Medicare Hospice Benefit 1982 – for terminally ill with a prognosis or 6 months or less;

  • 4 levels of care – routine home care, continuous homecare, inpatient respite (up to 5 days care) and inpatient care;

  • exponential growth in services in last 25 years.

    (Connor, 2009)

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  • Recent focus on primary health approaches – “dying is everyone’s business”;

  • “quality palliative care at the end of life for all” (Palliative Care Australia,1999);

  • “Guidelines for a Palliative Approach in Residential Aged Care” (

  • “Program of Experience in the Palliative Approach” (

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beginning a palliative approach

  • discussion can commence anytime , but earlier is recommended , part of care from diagnosis (Oliver, 2002);

  • explanation-main aim to promote quality of life and manage symptoms;

  • existing supports – physio, rehabilitation – continue;

  • can be gradually adopted and integrated into existing care supports.

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diagnosis- breaking bad news ; proposal of a palliative approach to treatment

psychosocial and spiritual support

physical management of symptoms inc specialist care as required

end of life decisions

end of life care

bereavement support for family

A palliative approach in non-malignant illness

(adapted from Mitchell & Borasio 2007)

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health professional barriers to using a palliative approach approach to treatment

  • palliative care is only applicable at end stages of life;

  • how and when to refer;

  • lack of acknowledgement that the illness is not curable;

  • lack of knowledge /interest/comfort(fear)(Connelly 00)

  • lack of familiarity with illnesses;

  • discomfort discussing the need for palliative care;

  • resource/funding issues.

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family concerns to using a palliative approach approach to treatment

  • communication with health professionals;

  • lack of understanding that the illness is not curable;

  • discomfort discussing end of life issues as a family;

  • unwilling to use external/palliative care resources.

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conclusion approach to treatment

  • palliative care service models accommodate all in need of care;

  • eligibility based on need not diagnosis or prognosis

  • recommendation to undertake research to explores strategies for the role of palliative care, in assisting the person with chronic illness

  • palliative care for all, not a luxury service for few...