Advance Care Planning

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Advance Care Planning
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Palliative Care

• Palliative care is an approach that improves the
  quality of life of patients and their families
  facing the problems associated with a
  life-threatening illness, through the prevention
  and relief of suffering by means of early
  identification and impeccable assessment and
  treatment of pain and other problems, physical,
  psychological and spiritual.
• 
  WHO, 2002.

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Life Limiting/ Life Threatening

• In the context of the elderly person
• Life limiting/life threatening terms used
  interchangeably - an illness or a disease process
  that ultimately shortens the life expectancy of a
  person.

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The Palliative Approach

• Is a philosophy of care that recognises that
  quality of life, comfort and wellbeing are the
  right of every elderly person facing the last
  years of life.
• It is an approach to care, that accepts that a
  life limiting disease can cause discomfort and
  pain and that these things can be untenable to a
  person who has lived a full and long life.
• Most importantly it provides choice, the right of
  every individual to determine their care and
  treatment

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History

• 2004 - Guidelines for a Palliative Approach in
  Residential Aged Care were sent to every aged
  care facility in Australia.
• 2005 Workshops were delivered around Australia,
  educating on the palliative approach
• 2005 - 2 new national competencies in a
  palliative approach were developed.
• 2006 Regional Network Forums conducted around
  Australia

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Challenges in Aged Care

• Low care facilities community services may not
  have an RN available outside working hours
  ageing in place is best practice .
• Staffing, even in high care facilities is often
  at a minimum, skill mix is low and clinical care
  is much more complex with the increase in life
  expectancy and subsequent chronic disease.
• Aged people do not have clear trajectories to
  death and therefore the journey at the end of
  life is sometimes difficult to predict.

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Common Scenarios

• Death often expected so not really planned for
• Pain suffering can be accepted as norm
• Code of silence around the death word
• Low skill mix and sparse medical support
• Illness trajectories uncertain/ unpredictable
• Responsibility for end of life decisions unclear
• Pathogenic / medical model of care
• The Challenges Opportunities in Providing
  End-of-Life Care in Nursing Homes Mary Ersek
  (2003)

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Resulting in

• Multiple hospital admissions followed by sudden
  death often in hospital.
• Steady decline in health status not recognised as
  potentially terminal and long sometimes quite
  uncomfortable terminal phase.
• Invasive interventions that can often cause more
  discomfort and pain than disease being treated.
• Last minute urgency in end of life decisions.
• Unresolved issues guilt within grieving family.

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So what causes death?

• Cancer Remain fairly well for a period then a
  sharp decline over few weeks/months.
• Heart / Respiratory / Renal Failure Slow
  progressive illness with steep dips of acute
  illness followed by periods of wellness death
  possible in any dip. Co-morbidity common.
• Dementia Slow, steady decline and often a
  prolonged terminal phase.
• Living Well at the End of Life Adapting Health
  Care to Serious Chronic Illness in Old Age
  Joanne Lynn David Adamson (2003) RAND Health
  White Paper.

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First Trajectory - Cancer

• Short period of evident decline - typical of
  cancer. Most patients with malignancies
  maintain comfort and functioning for a
  substantial period. However, once the illness
  becomes overwhelming, the patients status
  usually declines quite rapidly in the final weeks
  and days preceding death. Hospice is an important
  part of the care for this trajectory .
• Lynn Adamson (2003)

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Second Trajectory - Organ Failure

• Long-term limitations with intermittent
  exacerbations and sudden dying - typical of organ
  system failure.
• Patients in this category often live for a
  relatively long time and may have only minor
  limitations in everyday life. From time to time,
  some physiological stress overwhelms the bodys
  reserves and leads to a worsening of serious
  symptoms. Patients survive a few such episodes
  but then die from a complication or exacerbation,
  often rather suddenly. Ongoing disease
  management, advance-care planning, and mobilizing
  services to the home are key to optimal care.
• 
  
• Lynn Adamson (2003)

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Third Trajectory - Dementia

• Prolonged dwindling - typical of dementia,
  disabling stroke, and frailty.
• Those who escape cancer and organ system
  failure are likely to die at older ages of either
  neurological failure (such as Alzheimers or
  other dementia) or generalized frailty of
  multiple body systems. Supportive services at
  home, like Meals on Wheels and home health aides,
  then institutional long-term care facilities are
  central to good care for this trajectory.
• Lynn Adamson (2003)

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Just for the record.

• Analyses of Medicare claims show that about
  one-fifth of those who die have a course
  consistent with the first group (mostly cancer
  patients) another fifth share the course of the
  second group (mostly organ system failure
  patients) and two fifths follow the third course
  (frailty/dementia). The last one-fifth of
  decedents are split between those who die
  suddenly and others we have not yet learned to
• Lynn Adamson (2003)

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Our Challenge

• To learn about and adopt a palliative approach
  when caring for our elderly people, that
  maximises wellbeing, quality of life, choice
  decision making
• To recognise when quality of life is impaired by
  curative treatment and discuss it with the
  person, their family, their carers and their GP.
• To advocate for the care recipient who may not
  want to go to hospital again and/or are
  experiencing distressing symptoms, that may not
  be being treated for comfort.
• To discuss and promote advance care planning as a
  positive step towards determining current and
  future preferences for care.

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Advance Care Planning

• Advance care planning that is systematically
  implemented in an RACF and involves communication
  between the care recipient, carers, family, and
  doctor increases the satisfaction of the resident
  and their family with end-of-life care.
• Advance care planning helps define a person's
  wishes, which can then be clearly documented and
  called upon at times when decisions can be hard
  to make by loved ones.
• Ongoing assessment is required to develop a
  comprehensive advance care plan that addresses
  all relevant issues as a persons state of health
  changes over time, it should always be flexible
  and contextual.
• Advance care planning is about comfort, choice,
  dignity, empowerment and peace of mind. It is
  about the highest quality of care for our care
  recipients.

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Principles of Advanced Care Planning within a
Palliative Approach

• The focus is always be on improving quality of
  life, comfort and wellbeing. (Guidelines for a
  Palliative Approach in Aged Care, Chapter 3)
• A curative decision may be considered even if not
  in the advanced care plan, sometimes a curative
  decision is made for comfort, this is still
  within the overall palliative approach.
• Relief of symptoms is paramount even if the
  treatment for relief has the potential to hasten
  death by a few hours/days this is not
  euthanasia. (NSW Guidelines for End of Life care
  Decision Making. P.13)
• The choice to accept or defer treatment must
  always be re-visited at the time that treatment
  is required and must always be what the person
  wants or would have wanted if able to make that
  decision.

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Our responsibility

• Talk about and educate others about the
  palliative approach and the choices that can be
  considered when faced with a life limiting
  illness.
• Recognise when the people we love and /or care
  for are approaching the end of life and discuss
  what would be important to them at this time and
  how we can make living more pleasurable and
  comfortable
• Support empower staff and families to refer
  symptoms that are causing distress to the elderly
  person,
• Support empower staff and families to question
  treatment that is invasive and to encourage our
  care recipients to make quality of life choices
  about the care and treatment they receive.