Dr J Chesterman
We move now to our next presenter, who is Dr Barbara Hayes, who would be well-known to most people in the room. Barbara is Palliative Care Physician and Clinical Lead at Northern Health in Advanced Care Planning. Please make Barbara welcome.
Dr Barbara Hayes
Thank you very much. This is going to be a fairly sort of quick look at both these aspects of my topic but hopefully it will stimulate some thinking for you to go away and reflect on. There are clinical implications of this legislation, both for clinicians and health services and, ultimately, for patients and their medical treatment decision-makers and families. I very much agree with John Chesterman. I think this legislation is very much about consent. The focus being on the person who lacks capacity to consent to their own treatment or who may lose capacity in the future. So, I think that’s the way to think about it and, can I also say that I actually think that the law can be a good friend to us clinicians. We often worry about being sued. We often think that the law is something to stay away from but I think the more we understand it, the better we are able to understand how helpful it can be and I actually think that a lot of this legislation is co-defying what we probably should be doing anyway with the focus on the patient, their experience of the illness and what the person would want.
So, looking at clinician implications, I think the legislation provides clearer obligations for health practitioners when a person lacks medical decision-making capacity. Firstly, we have to provide treatment with the person’s preferences and values and not best interests. We also have an obligation under this legislation to make reasonable efforts to discover an advanced care directive or the appointment of a medical treatment decision-maker. So, we actually need to ask … we need to ask so we can use the advanced care directives. If we don’t know about them, we can’t use them. Many people won’t choose to complete a written advanced care directive, but that doesn’t mean that they don’t have identifiable preferences and values that we can actually use when it comes to making decisions and that the medical treatment decision-maker is able to use when they have to make decisions for a person. We know from the literature that it actually can be quite difficult sometimes to complete advanced care directives because it’s difficult to anticipate everything that might lie ahead for us. How severe the medical illness is, the chance of our recovery. I would recommend this article. It’s probably my favourite article in the advanced care planning world and these authors suggest that advanced care planning should be about preparing the patient and their medical treatment decision-maker for the decisions that might need to be made in the future – real time decisions, rather than trying to make every decision now for future deterioration because that can be quite difficult.
So, I think, you know, this sort of conceptualises advanced care planning much more as a process. Some people will want to identify specific treatment preferences and values. Sometimes, actually, they do this for the benefit of the family. Even though we talk about autonomy being the driver, a lot of people do complete advanced care planning documents to actually make it easier for their family in the future.
So, our instructional directive provides legally binding consent and or refusal for current and hypothetical future conditions. So, that is a big change from what we have now with our refusal of treatment certificate. They do need to be completed with caution because you don’t want to rule out treatments that the person might actually want but just hadn’t thought about occurring and I think, we would hope and expect to see a lot more values directives and perhaps a smaller number of instructional directives. Instructional directives contain implicit consent or refusal but, even though it’s not the role of the medical treatment decision-maker to provide consent or refusal, good ethical and clinical practice would still require us to talk to the medical treatment decision-maker and the broader family about what’s happening. Also, it’s very likely that there will be a lot of decision-making that isn’t covered by an instructional directive. So, there may be lots of other decisions that need to be made that aren’t covered by the directive.
I think there’s quite a few system implications. First of all, as we’ve already identified, the forms and the guidelines, both for advanced care directives and the medical treatment decision-maker, these will become available through the Office of the Public Advocate and the Department of Health and Human Services websites. We need systems for actually capturing prior appointments of medical treatment decision-makers and advanced care directives and then activating them when the person loses capacity. We also need processes for adapting our current policies and forms. A lot of our policies and forms have language that will not reflect the new legislation and, so, putting the new terminology in would be one aspect of it. Policies around consent, including consent for medical, is one we’re grappling with at Northern Health at the moment. I think one aspect that needs consideration is policies around non-medical staff and instructional directives. It’s very usual for non-medical staff to wait for medical treatment orders to act upon those but this legislation requires that all registered health practitioners act on instructional directives. So, if there’s clear instructional directive refusing treatment, nurses at the bedside are going to have to act on that if they know about it, even if there hasn’t been an opportunity for that to be put into a medical treatment order. So, I think that’s something that we need to think about. There’s also going to need to be policies written around children and capacity and advanced care directives.
Of course, this is going to require a lot of education and so that’s going to be relevant for all the clinical staff and, of course, we’re going to need to be able to provide information for our patients and families and it will need to be in an accessible – it needs to be accessible both in, you know, using simple language and also in people’s preferred language.
I think we’re having a whole forum today, trying to get our heads around this legislation. So, you know, there’s a challenge in that and if it’s challenging for us, it will be challenging for lay people to understand it and it’s important that we’re all consistent and using the same language and not giving confusing information.
There is a checklist available on the table that the Department has developed for health services to actually think about some of the issues that they might need to think about in terms of preparing for this legislation and that’s what it looks like on the table there.
Now, this legislation very specifically allows a person with capacity to complete an advanced care directive. Now, a values directive can certainly be completed by people with cognitive impairment even if that requires some support in converting preferences of values into a written statement but there will be people who don’t have that capacity to complete advanced care directives and the Department is taking the approach that in Victoria, we are going to not use the advanced care planning concept for people who lack capacity. We’re going to keep that as a separate concept for people with capacity and, so, that’s a bit of a change in thinking about how we’ve been managing this in the past and … whoops, wrong way … so, what about all those people who lack capacity? Do we do nothing for those people? Well, in fact, the legislation helps us there too. So, we have this hierarchy of decision-making. If there’s an instructional directive, it goes straight to that for consent or refusal. Can I just say I actually think it’s really helpful to not talk about binding documents? Binding… but think about … or legally binding documents. You know, people often say, ‘are these legally binding’? Instructional directives convey legally binding consent or refusal. Other documents all have – the values directive is a legislative document and it needs to be given effect to and there’s lots of other information that comes about the person’s preferences and values. That also has to be given effect to under this legislation. So, there’s legislative support for other information about the person. So, I think we need to be a bit cautious in our language.
So, after looking at instructional directive, we look at the values directive to see if there’s a valid and relevant values directive, we look at other preferences expressed by the person. Values expressed, values inferred. So, we can learn a lot about people by watching how they make other decisions. How they live their lives, even if they don’t actually articulate that. A good example, I was talking to a neighbour whose mother was in a life-threatening situation and they had to make a decision about whether to try and persist with further life-prolonging treatment or whether to in fact say no, it’s time to stop and focus on comfort and they made that decision for their mother because they had watched their mother make that same decision for their father and they had heard her reasoning and thinking. So, it was a really straight-forward decision because they knew how their mother felt from watching that decision and if there is nothing to guide us, in terms of preferences and values, then it’s really about what promotes the personal and social wellbeing of the person.
So … I keep going backwards, sorry …
So, if we could capture these particular expressions or understandings and capture them in some sort of written document that could be useful as a way to communicate what we know, what others know about a person and this is what we’re going to do. We’re in the process of developing a form to capture what is already understood about the person’s preferences and values. It may actually be capturing previously stated oral advanced care planning. It may be based on what they’ve said, how they’ve lived their lives and made decisions, observations about how they cope with their health, health issues and medical interventions. It can be completed by a medical treatment decision-maker. It can be completed by other family, carers, close friends or maybe a professional care worker. There’s some people in our community who have no medical treatment decision-maker. Nobody to make decisions for them. The people who know them best are the people who care for them professionally. They know what they like and don’t like and what frightens them. Those sorts of things. So, more than one person can write in this document. It’s a living document that can be updated as new information becomes available and, as the person’s condition changes, so that perhaps something that they were not distressed by in the past like having blood tests or going to hospital. Maybe now, that becomes highly traumatic and we need to rethink about what is actually going to be best for this person. It’s also an opportunity – having a document like this, is really an opportunity also for the medical treatment decision-maker to sort of reflect upon what the person said and the things that would be important to bring to any medical treatment at a future time before a crisis. So, actually putting that information in a document that can be communicated and transferred etc.
So, how do we put all this together into, you know, activating all this, in terms of medical treatment decisions? I think the important thing to consider too is the patients’ preferences and values are one part of the decision. They are not the total decision. There’s also another element to any decision-making and it’s about what is wrong with this person? Why have they become unwell? What is reversible? What’s not reversible? What’s treatable? What’s not treatable? and, really, so any decision-making has to start with some sort of medical assessment. Medical in the generic sense but some sort of assessment about what’s wrong and what we might be able to do. Certainly, often, that is a doctor decision but, in the community, it might be the nurse who’s visiting at home – a nurse practitioner, for example. So, that’s the first step and I would just remind everyone that the medical treatment decision-maker is the substitute decision-maker for the patient, not for the doctor or not for the health worker. So, it’s not for the medical treatment decision-maker to do the medical assessment and to determine what the options might be. That’s our duty and our responsibility and we’re obliged to do this. So, that’s the first step. Once we’ve got that sorted, we’ve worked out what the boundaries are within which we can have a conversation about the treatment options and that’s a shared decision-making discussion. It’s a two-way conversation where either clinician explains things to the patient in a way they can understand and I learn about the patient so that I can explain things in a way that’s meaningful to them and help them sort out what might actually be most suited to them and hopefully come up with an agreed medical treatment plan.
So, that first step, as I said, is the bit we need to do as clinicians and that is the everything. So, when patients and families say we want everything done, that’s the everything. It’s not everything known to medical science and, previously, this was an understanding in common law, but this legislation actually articulates that, in that there’s no obligation to provide futile or non-beneficial treatment. So, when the patient can’t communicate with us in the medical decision-making, we need to speak with the medical treatment decision-maker. We still will, of course, involve the patient as much as they are able in that decision. This is where we apply any instructional directives, including the current refusal of treatment certificate would also fit up there as well. So, once we know what’s wrong or have some sense of what the situation is, then we can work out whether any instructional directives apply. This is where values directives and other advanced planning care documents apply. These inform the medical treatment decision-maker, as well as the clinician, about the preferences and values that the person wants to really be brought to that decision. So, that could include oral, written, it could be values directives or just some other written form of document and, certainly, in the hospital setting, that concept of an agreed medical treatment plan, including overall medical treatment goals and specific emergency medical treatments and limitations to that is a common thing that we do and, at Northern and a number of other health services, we would call this a goals of care and decisions about CPR fit right at the very end of this decision-making. It’s not the starting point.
So, the other piece of work that we’re doing is to look at developing something similar to the hospital goals of care for a residential aged care setting. At Northern Health, we’ve been trialling a residential aged care goals of care form. Monash Health, the residential in-reach, have also been trialling one. We’ve been learning from each other and tweaking and adapting our forms and we’ve also had input from a working group and the Office of Public Advocate and clinicians. We’ve come up with a template for a residential aged care goals of care form so that it’s a way of documenting or translating advanced care directives or other advanced care planning documents or just known preferences and values into medical treatment orders are unequivocal and can be acted upon by health care workers. So, we’ll also make a template available for people to look at a to use if they see value in that. At the moment, we see it as particularly useful for residential in-reach because, often, residential in-reach goes into aged care facilities and do a lot of treatment planning, working out what the limits are and working out what the person would want within those limits and, certainly, I see interested GPs being able to use that as well. So, the people living at home, people have asked questions in the past about what do they do and, certainly, where people have … certainly, if they have an instructional directive, then the ambulance paramedics must act on that. If they have other preferences or the person themselves is not able to complete an instructional directive, but their medical treatment decision-maker knows a lot about this person and knows that there are preferences for treatment limitations or there are medical reasons why there should be treatment limitations, then medical treatment orders can be created either by the GP or a specialist so that those orders are in the house as well. So, that’s basically our goals of care form which you can’t see but we will make available.
I’ll stop there and just another reminder. 102 days to go, so there’s quite a bit to do in that time. I know people have been doing … there’s lots of work been happening but there’s still, I’m sure, we’ve all got lots more to do, as the 12th March approaches. So, thank you.