1. EMGO Instituut - Care and Prevention

2. Advance Care Planning with older patients and their carers
Annicka van der Plas
Co-authors: M. Eliel, W. Schuijlenburg, D. Willems, B.D. Onwuteaka-Philipsen
My name is Annicka van der Plas.
I will be the presenting author today, but I would like to acknowledge the work of my co-authors, Miriam Eliel, Wim Schuijlenburg, Dick Willems and Bregje Onwuteaka Philipsen.
EMGO Instituut - Care and Prevention

3. Disclosure belangen NHG spreker
(Potentiële) belangenverstrengeling
None
Voor bijeenkomst mogelijk relevante relaties met bedrijven
Sponsoring of onderzoeksgeld
Honorarium of andere (financiële) vergoeding
Aandeelhouder
Andere relatie, namelijk …
Financial support: ZonMw (project ).
There is no conflict of interest, and I would like to thank ZonMw for their financial support.
**The funders had no role in data collection and analysis, selection of respondents, decision to publish, or preparation of the manuscript.
EMGO Instituut - Care and Prevention

4. Today Introduction: Methods Results Discussion Introduction Methods
Contact
Today
Introduction:
What is ACP*?
Research question
Methods
Results
which options for future treatment do older people think about,
which treatment options are discussed with the GP,
what are reasons not to engage in ACP.
Discussion
My topic of today is Advance Care Planning in primary care. Do older persons think and talk about preferences for future treatment?
Er zal een beamer, laptop en projectiescherm aanwezig zijn. Wij verzoeken u uw presentatie (zie bijlage voor format) uiterlijk maandag 28 mei a.s. aan te leveren per
* ACP = Advance Care Planning = vroegtijdige zorgplanning
EMGO Instituut - Care and Prevention

5. What is Advance Care Planning?
Introduction
What is Advance Care Planning?
a continuous process
Preferences and care needs
before that care is needed
Personal values, care plan, record
I’ll start with a definition of Advance Care Planning. Advance care Planning is a continuous process in which discussions on care preferences and needs are held between care professionals and the patient and informal carers.
Discussions start before care is actually needed. I’ve highlighted this in red, because it really is the key word in Advance Care Planning.
It includes exploration of personal values and wishes, which are translated into a care plan, and preferences are recorded in the patient file.
It is already known from review studies that with Advance Care Planning, more advance directives are drawn up and care is provided according to preferences more often.
* ACP = Advance Care Planning = vroegtijdige zorgplanning
EMGO Instituut - Care and Prevention

6. AD or ACP? Advance Directive: Advance Care Planning: Document
Introduction
AD or ACP?
Advance Directive:
Document
living will; e.g. ‘DNR’
health care proxy
Advance Care Planning:
Conversation(s)
Personal values
It’s important to stress the difference between Advance Care Planning and filling in an Advance Directive. An Advance Directive is a document in which patient preferences are registered in case he or she becomes unable to make decisions on his or her own. An Advance Directive can be the result of Advance Care Planning or it can be filled in by the patient without the process of Advance Care Planning.
Advance Care Planning is a process of communication. Central is the exploration of personal values and wishes.
For patients, this conversation on personal values is the most important thing of Advance Care Planning. They want to discuss the social, psychological, and emotional issues that arise with the choices they have to make.
EMGO Instituut - Care and Prevention

7. Conversation starters
Introduction
Conversation starters
What is important to you as you think about the future?
What, to you, is a good day?
Tell me about your illness and how things have been going for you in the past few months?
So, with that in mind, these are possible conversation starters. Which one is best, depends on the patient and phycisians personal styles. I’ll give you a moment to read them and make up your mind on which question would work for you, if you were the patient.
KLIK:
References: Decision Assist; The Conversation Project; Just Ask
EMGO Instituut - Care and Prevention

8. Quality of life, not about death
Introduction
Quality of life, not about death
What is important to you as you think about the future?
What, to you, is a good day?
Tell me about your illness and how things have been going for you in the past few months?
As you can see from these examples, they all start with asking about wishes and values. None of these conversation starters is ‘would you like to receive cardiac recuscitation’?
Advance Care Planning is about quality of life and what patients are prepared to give up for a longer life.
References: Decision Assist; The Conversation Project; Just Ask
EMGO Instituut - Care and Prevention

9. ACP in ‘my’ project Experiences in West Friesland1 75 years or older
Introduction
ACP in ‘my’ project
Experiences in West Friesland1
75 years or older
Home and Care home (where the GP is still the main physician 2)
First conversation: Nurses, certified nursing assistants or practice nurses 3
Subsequent conversations: GP
1 no nursing homes (in which elderly care physicians are the main physician)
2 In Dutch: verpleegkundige / EVV’er / POH
In our project, we draw on experiences with ACP in West Friesland. Our target group exists of all patients within the GP practice who are aged 75 years or older. These are homedwelling patients or they live in a care home. But they still receive care from a GP.
Patients have a first conversation with a home care nurse, or certified nursing assistant or with the practice nurse. This can either be pretty basic, just to introduce ACP and ask the patient to make an appointment with their GP, or more elaborate.
Subsequent conversations are with the GP. 1
2 no nursing homes (in which elderly care physicians are the main physician)
3 In Dutch: verpleegkundige / EVV’er / POH
EMGO Instituut - Care and Prevention

10. Introduction
Research questions
Which options for future treatment do older people think about:
Hospitalisation, admission to a nursing home and Intensive Care unit,
Which treatments they want or not,
Preferred place of death?
Do they talk about preferences, and if so, with whom?
What are reasons not to engage in ACP?
Our aim is to describe which options for future treatment older people think about, which treatment options are discussed, and what are reasons not to engage in ACP.
EMGO Instituut - Care and Prevention

11. Questionnaires 2 care homes and 10 GP practices aged 75 or >
Methods
Questionnaires
2 care homes and 10 GP practices
aged 75 or >
before implementation
Care homes: n=125 patients, range 50 – 75
GP practices: n=2182 patients, range 75 – 330
We sent questionnaires to all patients aged 75 or older residing in two care homes or enlisted with 10 GP practices. We sent the questionnaires before implementation of Advance Care Planning.
In the care homes 125 patients received the questionnaire, one care home had 50 residents and the other 75.
In the GP practices 2182 patients received the questionnaire, ranging from 75 to 330 patients per GP practice.
******.
De voormeting vond plaats voor de implementatie en training, in januari en februari van Vragenlijst zijn verstuurd naar alle patiënten van 75 jaar of ouder die op 1 januari 2017 ingeschreven stonden bij de tien deelnemende huisartspraktijken en twee woonzorgcentra. Op dit moment vindt de nameting plaats.
EMGO Instituut - Care and Prevention

12. Response Respons2 n = 1214 (52%) Female 57% Mean age 81 (SD 5)
Results
Response
Respons2 n = 1214 (52%)
Care home: n = 49 (39%)
GP practices: n = 1165 (54%)
Female 57%
Mean age 81 (SD 5)
Married 49%
The response rate was 52%.
We received more questionnaries from patients in the GP practices than from residents of the care homes.
Most respondents were female, and the mean age was 81 years.
****
35% weduwe of weduwnaar.
EMGO Instituut - Care and Prevention

13. Nagedacht over… Older persons have thought about preferences on:
Results
Older persons have thought about preferences on:
More than half of the respondents have thought about whether they wanted to be admitted to hospital, in a nursing home or on an intensive care unit, and which treatments they would want or not. And 44% have thought about the preferred place of death.
N = 1214; no answer is coded as ‘no’
EMGO Instituut - Care and Prevention

14. Older persons have spoken with…
Results
Older persons have spoken with…
When people speak about preferences, than people mostly talk to family. People do not talk to their GP that much about preferences.
As a reference I repeated the percentages for ‘thought about’, and you can see there is a gap between thinking about preferences and talking about them.
N = 1214; no answer is coded as ‘no’
EMGO Instituut - Care and Prevention

15. Reasons not to engage in ACP (1)
Results
Reasons not to engage in ACP (1)
Respondents could indicate why they did not want to talk about future preferences. It was a multiple choice question, but they could give more than one answer, and the last option was ‘other’, and there they could fill in yet another answer there. People gave multiple reasons, so the percentages won’t add up to 100%.
This is the top 3 of answers most given. As you can see, only one of the answers is an indication that people could have a problem with ACP in itself. Only the last answer goes against the principles of ACP.
The first answer, my next of kin know what I want, this can be an assumption by the respondent, or an actual discussion has taken place.
The second answer, I see no reasons not to talk about it, can be an indication that the conversation simply hasn’t come about yet. Or a conversation has taken place.
***Vraagstelling: wat zijn voor u redenen om niet over uw wensen voor toekomstige zorg te spreken? Meerdere antwoorden mogelijk.
EMGO Instituut - Care and Prevention

16. Reasons not to engage in ACP (2)
Results
Reasons not to engage in ACP (2)
The top 3 were the answers most mentioned, and you can see here that other answers are mentioned a lot less by patients.
Just like on the previous slide, there are reasons that are directly related to principles of ACP, and there are reasons that indicate no problem with ACP in itself. Those are reasons why a discussion hasn’t taken place yet, but a discussion could take place later.
EMGO Instituut - Care and Prevention

17. Discussion Few conversations with GP
Do others really know what the patient wants?
Advice: GP should start conversation*
It’s always too soon, until it’s too late!
Although a majority of persons aged 75 years or older think about future care, few conversations on preferred future care take place in primary care.
A substantial 37% of respondents say that their next of kin know what the patient wants. When you look at research in which both the patient and their family read scenario’s and indicate which care the patient would like to receive, it becomes clear that mostly, the assumption is correct. However, in scenario’s describing dementia or stroke, there was a lot less agreement on care preferences.
And especially in stroke and dementia, at one point or another it will be likely that the family has to decide on care for the patient. So, it is important to involve family in discussions.
Like I said, it is already known from previous studies that with Advance Care Planning, more advance directives are drawn up and care is provided according to preferences more often. We see in this presentation that most patients have no objectives against ACP. So, I would say that it is good to start with Advance Care Planning conversations. It is also known from previous research that the patients prefer the GP to take the initiative. It is a difficult conversation to start, but for a patient this will be more difficult than for a professional healthcare provider. As a GP you can work together with the community nurse or with your practice assistant.
In one article on ACP I read a sentence, that for me is the key to ACP; It is always too soon, until it is to late. Don’t rely on prognostication, don’t wait until the patient is really sick. By timely discussion of what is important to the patient and carer, the patient can make up his or her own mind without time pressure. They have time to ask questions, gather information, think about what they have heard.
At this moment we are implementing ACP. After evaluation, in the second part of 2018 the ACP implementation materials (e.g. registration forms, manual) will be available for further implementation.
**Maybe, when you suggest to have a conversation, the patient will not be ready for this. But even only the offer to have this conversation, may create awareness with the patient. Also, patients sometimes think that care providers do not have time for ACP. By starting the conversation, you show that you are open to it.
* Samen met POH ouderen of wijkverpleegkundige
EMGO Instituut - Care and Prevention

18. http://www.verensotijdschrift.nl/om2017/septemb er-2017/
Contact
er-2017/
twitter.com/ConsortiumPz
Annicka van der Plas vumc.nl
EMGO Instituut - Care and Prevention

19. Over hoeveel onderwerpen?
Extra slides
Over hoeveel onderwerpen?
We hebben dus met betrekking tot 5 onderwerpen gevraagd of ouderen hebben nagedacht over gewenste zorg. Ik was wel nieuwsgierig of er een groep is die over alles nadenkt en een groep die nergens over heeft gedacht. Dit is de optelsom van het aantal onderwerpen waarover iemand heeft nagedacht. De uitersten van nul, dus over geen van de onderwerpen nagedacht, en 5, over alle onderwerpen nagedacht, komen inderdaad het meeste voor.
N = 1214; geen antwoord is geïnterpreteerd als ‘nee’
EMGO Instituut - Care and Prevention

20. Ingredients of ACP conversation
Extra slides
Ingredients of ACP conversation
Introduction
Conversation starter
Listen, ask, give information
Resume
From ACP to AD (if necessary)
Instructions
Close
(Repeat)
Each Advance Care Planning conversation roughly follows the same path. A first conversation will take up more time than later conversations.
EMGO Instituut - Care and Prevention

21. Instructions DNR -> Do NOT call 112 Futile -> medical decision
Extra slides
Instructions
DNR -> Do NOT call 112
Futile -> medical decision
No guarantees
Change -> discuss
Were to keep the AD
Who needs to know?
The last part of the conversation is for providing instructions.
If there is a ‘do not resuscitate’ order, then it is important that informal carers do not call for an ambulance. Instead they should call the GP or locum.
Also, it’s important to explain that if a physician thinks a treatment is futile, he or she will not provide it. That is a medical decision which may clash with the preferences of the patient.
There are also other reasons why there are no guarantees, for instance if the patient gets unwell while there is nobody there to help or when bystanders are not aware of the preferences.
But also, there is always a risk, certainly when you draw up an Advance Directive, that care is provided according to these preferences, and if the patient changes his or her mind without discussing it, they must acknowledge that risk. If the patient changes his or her mind about preferences, it’s important to discuss this with the GP.
If there is an Advance Directive, it should be kept in a visible place and it must be easy to find for next of kin, home care nurses and others. Patients should take the Advance Directive with them when they are admitted to hospital.
Furthermore, other people – next of kin, home care nurses, neighbours – should be aware of the patients preferences and of an Advance Directive.
***************************.
Do you have the information you need to make decisions about the kinds of procedures you do or do not want if you become very sick with a life-threatening illness?
EMGO Instituut - Care and Prevention

22. Atul Gawande: 5 questions
Extra slides
Atul Gawande: 5 questions
What do you know about your illness?
What are your fears and uncertainties, when you think about the future?
What, to you, is a good day?
What are your life goals and priorities?
What are you prepared to give up or not, what are prepared to endure?
EMGO Instituut - Care and Prevention