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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

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
outline
  • intersection of palliative care, the palliative approach and non-malignant illnesses;
  • palliative care policy direction around the world;
  • implications for services.
transitions
transitions
  • 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
healthcare changes
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
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).
palliative care a palliative approach
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
benefits of a palliative approach
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.
a palliative approach to non malignant illness
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).

general comments
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.
difficulties with policy
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?
uk policies
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.
european association for palliative care
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)
us policies
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;
us policies cont d
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)

australia
Australia
  • 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” (www.agedcare.pallcare.org.au)
  • “Program of Experience in the Palliative Approach” (www.pepaeducation.com)
beginning a palliative approach
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.
slide19

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)

health professional barriers to using a palliative approach
health professional barriers to using a palliative approach
  • 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.
family concerns to using a palliative approach
family concerns to using a palliative approach
  • 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.
conclusion
conclusion
  • 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...