Advance Care Planning

1. Advance Care Planning

2. 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.

3. 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.

4. 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

5. 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

6. 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.

7. 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)

8. 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.

9. 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.

10. 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 patient’s 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)

11. 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 body’s 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)

12. 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 Alzheimer’s 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)

13. 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)

14. 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.

15. 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 person’s 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.

16. 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.

17. 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.