Advance Care Planning Ian d’Young Performance Improvement Team Auckland District Health Board

$20.5 million!

Chance of winning 38 million to 1 Chance of dying guaranteed Who has plans on what they would do with a big win? Who shared/talked about it with your family, mates? Whose doctor/healthcare team knows what is important to them? Do they know what care and treatment you might want as you approach the end of your life? Who knows what their partner’s care preferences are? Who has PoA of personal care & welfare for someone else. Do you know what that person wants, what their values and beliefs are? Would you be able to make a decision for them that they would have wanted for themselves? Everyone has a story – 10 to 1 are bad stories….

What is the problem? Clinicians don’t know what is important to the patient Ratio of positive experience: negative is 1:10 Most of us don’t talk about it until it’s too late Huge stress for patients, families and clinicians Talking to this slide - It has been shown that we tend to over treat and provide care that patients with terminal illness don’t want and often don’t need.

A question to clinicians… How many times have you thought “…if only”? Talking to this slide - It has been shown that we tend to over treat and provide care that patients with terminal illness don’t want and often don’t need.

What is Advance Care Planning ACP is a process of discussion and shared planning for future health care. It involves the patient, whanau and health care professionals. ACP gives patients the opportunity to develop and express their preferences for future care based on: their personal views, culture and values a better understanding of their current and likely future health the treatment and care options available. Talking to this slide : Discuss the evolution of ACP – from DNR orders made by clinicians to DNR - decisions made in consultation with the patient – drive to have patients make decisions in advance (advance directives) still with the focus of transfer of treatment decision-making to the patient – advance care planning where the value is in shared decision-making and conversations, where a plan or advance directive is not the only outcome of the process. It is now focused on bring people together to talk about end of life and future care possibilities. DNR – evolution process

Talking with family, loved ones and the care team or GP is important It’s a process ACP needs to be introduced early enough for people to have lots of time to think about, talk about and document their wishes Talking with family, loved ones and the care team or GP is important If a person changes their mind or their circumstances change, simply update the ACP…it’s not set in stone DNR – evolution process

Urgent need to break through the barriers to improving care: Why is ACP important? Urgent need to break through the barriers to improving care: Talking to this slide - CONSUMERS – we have an aging population dying from chronic illness complications or frailty. Couple of decades ago death was clearly part of living, we died in the community - this has also changed – death and dying are largely taboo. The deep and powerful fact of death is that we naturally go to lengths to avoid until we have to, and sometime not even then – death denying instincts of us all are intrinsic in our make up, part of our survival DNA and we are right to tread carefully in this area and not demean its significance. The flip side of this is that people are dying unprepared. Survival DNA

Urgent need to break through the barriers to improving care: Why is ACP important? Urgent need to break through the barriers to improving care: Talking to this slide With the advent of modern medicine and medical advancement, we can keep some people alive indefinitely, stay off death. In the not too distant past, people generally died more suddenly from infection or accident. Dying has not become an issue that requires a diagnosis. We are not effectively communicating diagnosis and prognosis, we often avoid it because we believe that it will adversely affect chronic disease self management and/or strip the patient of hope. Studies have shown that this is in fact not the case for most people. Diagnosis, etc

Better communication across the sector Why is ACP important? Better communication across the sector Talking to this slide With the advent of modern medicine and medical advancement, we can keep some people alive indefinitely, stay off death. In the not too distant past, people generally died more suddenly from infection or accident. Dying has not become an issue that requires a diagnosis. We are not effectively communicating diagnosis and prognosis, we often avoid it because we believe that it will adversely affect chronic disease self management and/or strip the patient of hope. Studies have shown that this is in fact not the case for most people. Diagnosis, etc

An Advance Care Plan is a record of a person’s wishes, preferences, values and goals relevant to future care and could include an advance directive What else could it include? An advance care plan is an articulation of wishes, preferences, values and goals relevant to all current and future care.

Changing outcomes

Consumer barriers People are thinking about and touching on it in casual conversation Most don’t know they can influence the outcome They want healthcare workers to bring it up

…and they want to talk about it early

DIAGNOSIS and DISEASE MANAGEMENT If something unexpected occurred, are there circumstances where you would prefer treatment to shift to comfort and natural death? Does person have an EPoA Diagnosis, acute episodes, decline in function Painting a picture of what the future might hold with regard to disease progression. Traditional ACP Person at risk of dying in the next 12 months Detailed Planning and documentation of treatment & care preferences Before a person is “diagnosed”, understanding what is important to the person and encouraging thinking about planning generally DIAGNOSIS and DISEASE MANAGEMENT EARLY AT RISK

Information and resources Community Media coverage Messaging Info resources Website Conversations that Count project

Information and resources Community Media coverage Messaging Info resources Website Conversations that Count project

Workforce barriers SKILLS and CONFIDENCE Not sure how to raise it Not sure whether to talk to the patient or their family Might get out of my depth – skill or knowledge Uncomfortable talking about it myself I don’t know how to raise it with someone who might have different cultural beliefs and values to me Not sure what to do with the information they will give me _________________________

Workforce barriers www.advancecareplanning.org.nz To find out more about our online training, courses and access our films and other resources, visit: www.advancecareplanning.org.nz SKILLS and CONFIDENCE Not sure how to raise it Not sure whether to talk to the patient or their family Might get out of my depth – skill or knowledge Uncomfortable talking about it myself I don’t know how to raise it with someone who might have different cultural beliefs and values to me Not sure what to do with the information they will give me _________________________

It’s good to share If clinicians can’t see it, it’s of no value Advise sharing of ACP with: EPA Family, spouse or trusted person GP/ Primary Care Secondary care (hospital record) Lawyer

It’s good to share People can send their ACP to be scanned to their hospital record at ADHB where an alert will be created

An alert on the hospital record

So how do I get started?

What do I need to do as a leader? Empower the team Mandate team to do online training Add it to your MOS board

What do I need to do as a clinician? Assess the right patient Choose the right time Get help when you need it

What do I need to do as a clinician? Document it to enable the next clinician

Documenting an ACP Conversation The CR8989 are ordered in pads of 50 through the normal Oracle stock orders Can be brief documentation Added to other ACP documentation in 3M

What do I need to do as a clinician? Include reference to it in discharge letter to enable primary care/ ARCs to follow up

Getting started: Top tips Watch the film online Complete the 4 level 1 Moodle Modules Place an ACP form in the front of each set of notes with the care plans Add it to the ward MOS board

And finally…

Conversation Starters

Conversations that Count Training

To find out more about our online training, courses and access our films and other resources, visit: www.advancecareplanning.org.nz SKILLS and CONFIDENCE Not sure how to raise it Not sure whether to talk to the patient or their family Might get out of my depth – skill or knowledge Uncomfortable talking about it myself I don’t know how to raise it with someone who might have different cultural beliefs and values to me Not sure what to do with the information they will give me _________________________