National Palliative Care Week Palliative Care: Everyone’s Business

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Advance Care Planning – how prepared are you?

Why is palliative care everyone’s business?

• • • • • As a community we need to consider: How we want to care for dying people? What are the priorities for resource allocation?

What does quality of life mean?

How do we support family carers?

What do each of us want for our own end of life care?

Modern trends

• Demographic: people living longer • Technical: medicine can do so much more.

• Professionalism: specialists needed for ‘care’ • Religious/spiritual: less connection to traditional church-based supports • Social: individualism, social mobility, changing nature of community, multiculturalism.

End of life in modern Australia

• Living longer, but taking longer to die • Up to two years at the end of life with:  Physical deterioration and disability  Increasing symptom burden  Dependence • More with dementia • More decision points for care

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Why don’t we die well?

People’s preferences are often unknown Only around one third of the general public had discussed death and dying with anyone (UK) • Many patients don’t receive excellent care. 54% of complaints in acute hospitals relate to care of the dying/bereavement (UK data)

End of life realities

• Patients who lack capacity often get more ‘aggressive’ care than those who can speak for themselves • Relatives and doctors tend to choose more aggressive treatment for patients than they would for themselves

Mythologies of care

• • • You cannot initiate talk of death as patients & families do not want this & you run the risk of precipitating it if you do (“don’t talk about death, it will kill him”) You have to do everything to maintain & prolong life otherwise you are causing death (“you can never give up on a patient”) Use of opioids & sedatives can contribute to the cause of death

Barriers to good end of life care

• • • • • Discussion of treatment limitation decisions difficult Health Professionals are uncomfortable with withdrawal of treatment ‘Persons Responsible’ also struggle with end of life decisions It is often hard to find out what people want What people want may also be problematical (medical futility)

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Health promoting palliative care

Education & information for health, death & dying Encourage interpersonal reorientation towards a ‘natural’ death Encourage reorientation of palliative care services towards public health ideas of prevention, harm reduction & community participation Combat death-denying health policies & attitudes

Principles of good end of life care

• • • • • Acceptance that death is an inevitable consequence of having life That dying days are as valuable as non-dying If cure, remission or restoration not possible, responsibility to provide palliative care Care is focussed on needs & wishes of patient Acknowledge relationships – impact on others

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Dying in Tasmania

Tasmania has well established palliative care services in each of its three area health services Approximately 4,000 people die each year in the state, and about 40% of these are referred to the palliative care services These patients have a better chance of dying at home and are less likely to die to die in a hospital

Terminology

• Advance Care Planning - process • Advance Care Directive – document • Person Concerned • Substitute Decision Maker • Person Responsible • Enduring Guardian

Legal principles

• • • Every competent adult has right to make decisions for themselves (‘respect for autonomy’) Every competent adult can refuse medical treatment ****************** (No obligation for doctors to provide treatment considered futile)

Capacity

• • • To have capacity patients must be able to: understand the treatment options presented, make an informed decision and understand the consequences of that decision

Capacity explained

• Fluctuating condition • People should always be consulted so far as they are able to understand • May be a temporary state (eg following stroke or head injury, or psychosis) • Is not an ‘all or nothing’ – may have capacity to make some decisions, but not others

Tasmanian Law

• Statutory law under Guardianship & Administration Act for people with capacity to appoint an Enduring Guardian to speak on their behalf re medical decisions • No requirement to provide Enduring Guardian with directions regarding preferences for care • ACD has common law status throughout Australia, and has been tested in court

Enduring Guardian

• Legally appointed using GAB form • Lodged with GAB • Only used if/when Person Concerned lacks capacity • ONLY for health and life-style decisions • Has NO role in financial management of person’s affairs • Fee payable

Why write an ACD?

• More likely to receive care in place of choice • Greater sense of control over treatment • Less stress for families making decisions • Better bereavement outcomes for families when they act in support of person’s wishes

When will an ACD be used?

• Will only be used if you CAN’T understand or communicate for yourself • • • • As long as you can: understand what you are told, make an informed choice understand the consequences, communicate with others, then you are said to have ‘capacity’ and you will be asked to decide for yourself

What to write in an ACD

Focus on: • Values, wishes & beliefs • Acceptable outcomes rather than specific medical treatments • End of life decisions - Can include broader care issues - May name a substitute decision maker

Who should have an ACD?

All of us, but especially: • People who have conflicted or estranged family, or very different values • People at risk of loss of capacity (eg early stage dementia) • People entering Residential Aged Care • People with chronic health problems • People with no family

Person Responsible

Substitute Decision Maker nominated by the Person Concerned OR May be an “approved” person under GA Act – either: • an Enduring Guardian, • Spouse, • Unpaid carer, • Other person with best interests at heart

Choosing your Person Responsible

• Doesn’t have to be family – sometimes better not • Someone who knows and understands your wishes • Would act in accord with YOUR wishes, not their own • Can be calm and assertive in difficult situation • Will be available if needed

Witnessing

An ACD should be witnessed by an independent adult who: • has no relationship to Person Concerned or Person Responsible • has nothing to gain from process • believes person writing ACD knows what it is, what it means, and that person is not under duress to write ACD

What an ACD is NOT

• Is NOT concerned with financial matters • Will not necessarily prevent emergency treatment by ambulance crews • Doesn’t mean that the expert opinion of doctors is irrelevant

Ethics and ACDs

• Doctors should respect their contents • It can be argued that there is an ethical obligation to do so, regardless of the statutory legal status in a given state or territory jurisdiction

Role of health professional

• Can help explain what possible events might happen • Can listen and advise on decisions • Can provide reassurance regarding fears • Can witness your ACD • Can support families and others in understanding ACD process and outcome

ACDs and Aged Care

• All residents should have detailed ACD and a Substitute Decision Maker • Clear wishes may prevent unnecessary transfers to hospital for dying residents • Importance of having SDM nominated and AVAILABLE

Emergencies & ACD

• Ambulance officers have duty to respond by CPR etc in emergency situations • Hospital staff response to ACD – withdraw or withhold treatment as indicated in ACD and by EG/PR • Keep ACD up to date • Keep somewhere easy to remember/find

Changing your ACD

• Can be changed at any time.

• Each version should be clearly dated, and preferably, the old one crossed out, or thrown away • If Substitute Decision Maker is changed, be sure to tell both old and new appointee • Make sure copies go to same people who had old version

Questions to ask

• What is most important to me?

• What do I think about death and dying?

• What do I fear about death and dying?

• What wouldn’t I want to happen to me?

• What does quality of life mean to me?

• Do I have any particular fears about medical treatments?

For those who lack capacity

• Can be completed by an appropriate ‘person responsible’ on behalf of person who already lacks capacity as a guide to others providing care • Need to state: - who the ACD is for, and - who is filling it in - address - signature - relationship

Questions to ask for another person

• What makes them feel happy and secure?

• What makes them frightened or upset?

• What were their beliefs and values earlier in life?

• Did they ever talk about what they wouldn’t want?

• What does quality of life mean for them?

• How do they respond to sickness or medical procedures?

www.tas.palliativecare.org.au

• • • bereavement support information Advance Care Planning information Upcoming activities and events – local and national