|
1
|
- 4th Renal Replacement Therapies Conference, April 2008
- Dr Christine Sanderson
- Staff Specialist, Palliative Medicine,RNSH
|
|
2
|
- This is not not about being a renal patient, its about being a human
being
|
|
3
|
|
|
4
|
- Renal patients are different from other people!
|
|
5
|
- Not many people have had to deal with
- A life threatening illness / chronic condition
- The threat of dying without ongoing treatment
- Hard choices about treatment options, and how they affect your life
|
|
6
|
You have had to confront things that many other people can avoid
thinking about.
- You may have already thought a lot about what’s important to you.
|
|
7
|
- Advance care planning is an opportunity to reflect on:
- What’s important to you?
- What’s your philosophy of life?
- How do you want people to remember you?
- If you weren’t able to make your own decisions, who is the best person
to do it for you?
- Do you have specific wishes or worries about the end of life that the
people caring for you should know about?
|
|
8
|
|
|
9
|
- The importance or relationships
- “Special patients” – “special health care teams” = special relationships
|
|
10
|
- Advance care planning is talking about
- “the elephant in the room”
|
|
11
|
- A chance to have some control
|
|
12
|
- Put your wishes on record so they can be respected
- Talk with your family about “what if” scenarios
- Identify your health care advocate / proxy
- Give that advocate some guidance about what you do and don’t want done
for you
|
|
13
|
- Cultural issues in advance care planning – the importance of having
control?
- versus
- The difficulties with having control!
|
|
14
|
- What else may be important at the end of life?
- Cultural / religious / spiritual matters
- Unfinished things – the legacy
- Friends and family time
- Finances
- Tidying up!
|
|
15
|
- What is it?
- Not necessarily a legal document but it can be
- Medical power of attorney versus next of kin
- Ongoing documentation in the medical record of the goals and priorities
of care
|
|
16
|
- Specific things that could be documented:
- “Not for resuscitation”
- “I do not want to be kept alive on a ventilator”
- “I do not want to be fed via a tube”
- Problems with very specific directives!
|
|
17
|
- Or broader guiding statements, eg…
- “Please ensure that if it is clear that my condition is in the terminal
phase, and cannot be reversed,
that my comfort and good pain management are the main priority, and that
my death is not prolonged by active treatments like antibiotics or
artificial feeding.”
|
|
18
|
- When to start thinking about advance care plans?
- Ideally: early in treatment
- Realistically: if things are changing
|
|
19
|
- What things may change?
- A new diagnosis of a bad disease (like cancer or MND)
- Other health aspects deteriorate (stroke, heart disease, dementia)
|
|
20
|
- Some people want to leave open the option of stopping dialysis “at some
point”
- There may be treatments or amounts of handicap that you may feel you
would never want to live with eg
- Being permanently bedbound
- Being unable to communicate
- Being unable to care for yourself
- Being unable to live in the place or manner which you would consider
to be quality of life
|
|
21
|
- **VERY IMPORTANT**
- These can change
- Thinking can shift and evolve
- You can change your mind
- If you have a written advance care plan, you should also think about
regularly reviewing it – eg annually
|
|
22
|
- How might you go about advance care planning?
- Write it down yourself, in your own words – or get your doctor or social
worker to help you
- Talk with family and loved ones about your wishes – let them know this
is how they can care for you if necessary
- Talk to your doctors – let them know what’s important to you
- If you write it down – make copies, and let people know
|
|
23
|
- You can:
- Carry a card to say you have an advance care plan
- Register an advance care plan with Medicalert
|
|
24
|
- Prompts (again) for what to think about
- What’s important to you?
- What’s your philosophy of life?
- How do you want people to remember you?
- If you weren’t able to make your own decisions, who is the best person
to do it for you?
- Do you have specific wishes or worries about the end of life that the
people caring for you should know about?
|
|
25
|
- If you are thinking about this because things are changing right now –
or if you have concerns about how those around you will cope when you
are dying – you can ask to be referred to your local palliative care
service.
|
|
26
|
- Help with decision-making
- Symptom management
- Support to be cared for at home
- Support for family members
|
|
27
|
- The reason for advance care planning is:
- So that things are not done to you that you would not wish to be done
- So that your wishes and individuality can be respected
|
|
28
|
- The most important things in advance care planning are:
- Knowing where you stand (conversations with your doctors)
- Knowing what is important to you
- Knowing who will speak for you if you can’t do it yourself (and making
sure they know too!)
- Anything which is important to you that needs to be written down into
your medical records
|
|
29
|
- Check out
- www.CareSearch.com.au
- Information for patients, carers, families and friends of those with a
life-limiting illness
|
|
30
|
- … should incorporate your own individual philosophy, and inspire others
– for example …
|
|
31
|
|
Notes