A difficult decision for a conflicted family

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This is the podcast. Takes unfortunate scenarios. and explores the essentials of clinical governance to find solutions. I'm Dr. David Rankin, a very experienced medical administrator and lead fellow with the Royal Australasian College of Medical Administrators. And this is Safeguarding. The essentials of Today, a difficult decision and a conflicted family. This is a a scenario that is about navigation and trying to make sure that doing the right thing is accepted by everyone.

That's Professor George Braitberg, A.M., the head of emergency medicine research at the Austin Hospital, and a board director at the Peter McCullum Cancer Centre in Melbourne.

And I'm presenting him with a difficult scenario. In my experience, most advanced care directives are values-based and it is important to have a very robust, transparent conversation with the medical treatment decision maker. In today's scenario, as director of emergency department at a large public hospital, you are asked to provide advice on the care of an elderly patient who presents with COVID.

They have a long history of atrial fibrillation and appear to be suffering from an evolving heart attack. You determine that they are deteriorating, and placing them on a ventilator will not improve their outcome and may increase their distress. The family is conflicted and distraught. The wife says that the patient has signed an advanced care directive that indicates that they do not want to go to ICU. However, the children are adamant that everything should be done to care for their father.

I start by asking Professor George Braitberg what issues this scenario raises. Well, as the clinician, there's Uh quite a lot of complexity to this scenario. On the one hand, there's been a medical determination that to Intubate this patient. And to continue advanced care would be futile and certainly against the patient's wishes as per the advanced care directive that has been cited by the wife. The other complexity, of course, is that there's family disharmony.

And that above all, we should do no harm. So this is a scenario that is about navigation and trying to make sure that doing the right thing is accepted by everyone. But acknowledging that If an act is still not going to be accepted by the whole family. There is an advanced care directive, so we know what the patient's wishes are. The wife is probably, although hasn't been established in the scenario of the medical treatment decision maker.

and would naturally be the spokesperson for the husband in any case and our duty of care is to the patient. and where the patient has not got the capacity to speak, then it would be to the medical treatment decision maker. And the children will have to understand that and it'll be our role

to explain that hierarchy to the children so that if they're uncomfortable with the decision, they still understand how the decision is being made. Trevor Burrus Let's start then by looking at advanced care directives.

I noticed on my Gov account I can put in a little advanced care directive and get my wife to a counter sign it. How do you go about making an advanced care directive? Advanced care directives in Victoria are fairly straightforward. You can do it online. You can do it through a general practitioner. There are two sorts of advanced care directives. There's the value based advanced care directive where you provide what you believe are

the values by which your end of life should follow. And that might be about not wanting to have pain, not wanting to wake up with a disability that prevents you from walking, talking, whatever it is and then you would rely if you have no capacity on your medical treatment decision maker to be able to interpret the situation and say, no, this doesn't comply with the values of the person or yes, this complies and we can do this treatment.

And then there are the instructional advanced care directives, which are much more proscriptive. So you can say In the event of a cardiac arrest I do not want to be intubated or ventilated. Or someone who has advanced heart failure, who's had a number of electro DCRs, for example, can say, I don't want a further one. So they're very specific and they're instructive to the clinicians because it means that We are very clear about what that patient wants in this particular context as opposed to

having to have a discussion with the medical treatment decision maker about the value statement. But in my experience, most advanced care directives are values based.

And it is important to have a very robust, transparent conversation with the medical treatment decision maker. Thanks, George. Uh you published a paper earlier in the year indicating that only about one percent of Australians have an advanced care directive. We're human. We're all going to die at some stage. We would like to die the way we want to die. Why is it that so few people organise advanced care directives?

I think it was Mark Twain that said there's death and taxes are inevitable. But that doesn't mean that inevitability means that we are prepared to do it. I think if we went out and asked people and said we will help you do your advanced care directive. People would comply, a lot of people would comply, but it's the initiative of going to your GP or having that conversation with your family that is really, I think, the sticking point.

Um and people may well have had a conversation with the family but not formalized an advanced care directive and thinking that that's the same from my perspective and I think for all the medical workforce. Advanced care directives, as they are written and as they are made available, are just so good because it gives us a view of what the patient wants. Why don't we have them? As I said, I think people just don't like to face

inevitability and their own end of life decisions. We looked at that in terms of across Victoria through the V E M D, the Victorian Emergency Mineral Database, and were quite surprised that there was such a little documentation and there's been respecting choices, there's been all sorts of programmes that have been put into place to try and elevate the conversations.

In a hospital environment it's probably less applicable than in in the primary care environment. I think this is something that general practitioners should proactively do with their particularly their elderly patients or patients with chronic disease problems. And personally, I think it should be part of an aged care accreditation. So if you go into a residential aged care facility, you must have an advanced care directive. It surprises me that that's not part of legislation.

They're difficult conversations and easy to put off. My father died at the age of eighty seven or so, and all of us kids had talked about it and said, Oh, we better talk to Dad about it. Is it we never did it? Until he started developing dementia and then it was too late.

It would probably be much easier if everybody had to have one filled out when they were eighty, or as you say, when they were admitted to an aged care facility. Aaron Ross Powell I think that people don't realize that in that very acute situation. For example, presenting to an emergency department in extremis. That's not the time that the patient, if they're able, or the family

should be facing this issue of what to do next. And we see that because we're working in the pointy end in an emergency department. But the context of having to make these decisions in a rushed way or where they've not been discussed before When the emotion is is so high powered and charged. You know, w I would love people to sort of do it in that sort of dispassionate time where they do gather the family around. Where there is, you know, a conversation about what ifs.

'Cause they are what ifs. My friend who's my age, who just had uh lung cancer removed, actually described to me that it was liberating to have that conversation with his family because they'd never had it before and Whilst it was confronting as you say, there's also that other side that we've had it, we understand what everyone in the room wants to do, and particularly what the patient wants those people to do on their behalf, and now we can move forward.

One of the terms that's often bandied around is this futility, futility of care. How do you determine whether or not care is futile? It's a great question. It's very complex. Futility derives from the Latin word futilis, which I looked up, and I was quite shocked to find out that it means worthless. So I think that term in itself creates its own problems.

And similarly when we talk about palliative care I think that creates problems using the word palliate because people in the community who think about palliation. think about dying, not about relieving suffering. So I think we're behind the eight ball already just because of the word futility. But medical futility, if you like, is that complex situation which is very patient specific.

can be quite ambiguous. There is no validated objective criteria. From the physician's perspective, it's where the intervention may be physiologically effective, but in a given case it won't benefit the patient. And in fact it may extend pain and suffering. And from the person who's affected the patient and their family, I think they need to understand that this definition encompasses the fact that

to continue treatment will have an undesirable impact on the quality of their life. However so they define it. And again if we've got Advanced Care Directive, we know how they would define it. In the absence of that, it is a physician decision. We hold I guess the knowledge and the experience and knowing that we would be causing pain and suffering, which again is against our Hippocratic oath of first do no harm.

We have to convey that as honestly and transparently to the family of the patient if the patient's not got capacity so that they too understand that there is no point we have a lot of tools, we have a lot of machines that go ping, but just because we have the tools and the machines doesn't mean that providing that care is actually in the patient's best interests. And it's complex because

We need to make sure that we don't come to that discussion with our own biases, whether they're ageist, gender, ethnic, whatever it is. We need to do this through the clinical lens. That this is the right path. for the patient's care and the treatment is targeted towards making sure that the patient doesn't suffer, doesn't have an intervention with very low risk of return or rate of return. And we're at the end of the day we're treating the patient as a person.

Predicting outcomes, though, is fraught. Every patient I think's got a story where the doctor said it was going to be this long and it was a lot longer or a lot shorter. How can we work out what the likely future is going to be for a patient?

Well in this scenario we've got a ninety three year year old patient who's got covert, who's got an evolving infarct, who's already got previous history of congestive heart failure. who's got an elevated lactate, who's got a decreased pH. We know that they're not perfusing their organs. We can look at their vital signs and know that their blood pressure is sagging. That's probably not as hard to predict in terms of the outcome.

So it's about your best estimate, particularly if in a large hospital it's the you know. collegiate discussions that we have with our other specialists, whether they be intensive care physicians, whether it be infectious diseases or respiratory in the case of pneumonia. And we work through this collaborative process to have a consensus. And I think That strengthens the discussion always when you have that discussion with families.

That you know, we have collectively looked at this from our various disciplines and our various experiences and knowledge and we believe that the best outcome for your loved one is to do this. Where you don't work in a large hospital, there's still opportunities to phone a friend. I think it is isolating to make these decisions, particularly where there's family disharmony on your own.

But again, as we should be in all of these discussions, we should be very transparent and say this is our best guess. This is what we think is going to happen. Because in a sense you don't want to say Anything too definitive because that will then cause disharmony if it doesn't come out the way you would predict. Aaron Powell What about if the situation's reversed? In this case, the wife?

is following the advanced care directive and has decided the patient doesn't want to go to ICU. What happens in the other situation, however, where the relative, carer, doesn't want an intervention, but the medical staff believe that intervention will likely lead to a good outcome for the patient. If the patient has an advanced care directive that they've made when they've had full capacity

And in a as I said, that dispassionate environment of discussion. And the treatment that is being proposed by the clinical staff is clearly against that patient's directions.

Then we shouldn't proceed. Okay. Now if it's a value based statement or if it's unclear and the medical treatment decision maker is making a decision that may not be in line with the patient in this particular context, in this particular condition, where there is experience of the clinicians looking after the patient, then I think it's it's a discussion.

But certainly if someone has clearly identified what they want to have happened, then we have to respect those wishes. Aaron Ross Powell So when do the courts get involved? So legally It's lawful for a healthcare professional to withhold or withdraw treatment that is futile or non beneficial. So going through the first example. And in fact the health professional doesn't have to obtain consent to make that decision.

Although it's, you know, highly desirable that it comes to a consensus agreement with the family or the medical treatment decision maker. Health professionals have no legal obligation to provide treatment that's not in the person's best interests and would be inconsistent with good practice. To my knowledge, no doctor has ever been taken to court over this issue. As long as the process follows the principles that we laid out earlier.

that there's good documentation of those discussions, who you had the discussion with. What that person said, how you sort of responded. if you get the collegiate endorsement by your other clinical colleagues. The courts will accept this as being within the remit of the medical profession. Aaron Ross Powell We've got outstanding cases where the family wanted to continue ventilation for young adults.

and the medical staff determined that it was futile at times years later. And the courts have got involved to try and resolve what's best for the patient. How does that process work? It still in my mind reverts back to the fact that the definition of medical futility if we have to use that word futility. is within the medical profession. There are ways in which we and we have an obligation to try and mitigate or ameliorate the disparity. So there are ways to do this. You can put someone

on non invasive ventilation as opposed to intubate them. You can do other things. But again if In principle, your curve is starting to move from benefit into suffering and pain that you're incurring on the that you're causing the patient then. then you don't have an obligation to proceed and The courts when they do discuss these things really very much rely on how it's presented and documented and what's been told to the family in these situations.

These are very emotionally traumatic situations for All the staff looking after the patient. How do you as a medical administrator before? support staff during the decision and particularly after the decision's been made. While the term second victim usually applies to someone who has been involved in a medical error. I still think that it also applies equally sometimes to the traumatic effect of these conversations on medical staff.

Particularly in the scenarios where there is family disharmony or the patient themselves is disputing the care. And I think that we have an obligation to our staff to ensure that They feel that the we have their backs that we are aware of their welfare needs. And obviously there are things like employer assistance programs and other things. But I think that the fundamental way is to ensure that the staff who are in the position to have these conversations

are trained that we don't expect our interns to be put in this situation. And unfortunately I know of a couple of situations where that's been the case. So it should be the senior staff member in the room. A because they have the knowledge and B because that's their role to be able to manage these more complex situations. So putting the most junior person in the firing line is certainly not one way in which you can handle this.

And I think as with all traumatic events, debriefing is really important. And debriefing needs to be performed by someone who Is used to it? is away from the situation itself. So, you know, you take someone into an office or whatever And you can do it in similar to any sort of disaster scenario where you'll do that hot debrief just to make sure almost that

We've got a welfare check at the time and the we're clear on what has happened. And then if you like a cold debrief a couple of days later on where we catch up and we say, Okay, let's go through this now that our emotions have settled down that

There's a bit of heat out of the situation. What is it that we did well? What is it that we could have done better? Are we going to change our approach? It may be that there's nothing that's going to change, but going through that process I think just takes a lot of baggage off your shoulders. I found on a number of occasions, particularly senior clinicians who say, No, no, I'm fine, I'm fine. It's all good.

And then you stop and say, No, come on, let's have a talk about it. Yeah, I think coffee is a great equalizer, taking someone down for a coffee. We're a little bit better since COVID on recognising well being as an issue in our healthcare professionals. The armour suited doctor

I think is being a little bit challenged and we are showing ourselves to be human. And I think it's important to persist. The other thing of course is if the person has a mentor, and I think mentoring in hospitals is something that needs to be improved or within professions, but It might well be that another conversation happens with the person in their mentor, which is someone who they have that trusted relationship with already.

And so I I think another way to mitigate this is really to ensure that there is a good mentoring system. Absolutely. Yeah. Unfortunately these cases often get into the media. How do you as a medical administrator manage Aaron Powell First I think it's important to protect

the individual clinician that's been involved. Try and ensure that their name, their details are withheld while there's any sort of ongoing investigation and certainly ensure that the rest of your organization similarly respects their privacy.

I think, you know, you've also got to be cognizant of the reputational risk to your organization. So If this does get into the media after you have discussions with your, you know, CEO and potentially your board chair and if there is a public affairs person, someone who can give you some trusted words as well. I think it's important to say that there has been a case, if that's got to the media.

that there is a process that's being looked at now whether this is going through an instant management process, whether it's a a HR process, whatever the process is that's applicable to the situation, it's about saying that we're going through this process, this process is going to be managed according to our guidelines and protocols so that there is, you know it is transparent, it is comprehensive and we'll be working with the relevant authorities to be able to provide the information

And as that information becomes more available then we'll have a you know, another series of of meetings. But I think at the first instance it's really about Trying to give the media enough that they feel that they've had something provided.

But also being a little bit protective of the persons involved, the privacy of the patient as well, and obviously the reputational risk to your organization. I've always found that really important. The media needs to be assured that there is a robust process. It's not arbitrary decisions, it's not an individual clinician making a hard choice. There's a robust process.

And the hospital's committed to following that through. Yeah, I think if you don't offer that, then immediately they will think that there is some cover up. Yeah. And that opaqueness is really your worst enemy. Thanks, George. Any final thoughts about this difficult and traumatic scenario? I think we need to look at the language. I try and avoid using the word futile. It may mean something to us, but as I said, it's might mean worthless to the family.

The most important thing is having conversations. I must say that I do usually end up bringing my personal experience into the conversation. So my mother's ninety three. She lives in a residential aged care facility. She has an advanced care directive. I'm her medical treatment decision maker. I will often talk about her, particularly when I'm talking to another family about Potentially putting a ceiling of care onto their elderly relative.

The feedback I've got when I've done that is that they have appreciated that I've actually put myself into the discussion as well and given them that perspective of what it's like to be a son concerned for their parents. And I think that from everything else that we do as medical administrators, from whether it's managing an incident or a complaint or feedback. We learn that if we're honest and transparent and we listen, and I think listening skills are probably really important here.

that we start to bring the family or the patient along in that discussion. And just as we talked about with reputational risk for media leakage, if the family we're talking to feels that we're holding something back or we're opaque, we lose that trust. And what we're trying to do is build trust with the family. I think the other thing is that The importance of finding a friend or getting support.

You know, medical administrators who may be chief medical officers, you know, can still seek the support of the senior clinicians involved with the specialties involved in the case or they can reach out to other medical administrators. having a chat with your uh CEO about how things are going is important. I don't think anyone in these situations should feel isolated. That was Professor George Braitberg, A.M., the head of emergency medicine research at Austin Hospital.

Peter McCullum, Kansas City. And that brings us to the end of this episode of Safeguarding Health. I'm Dr. David Rankin. Follow safeguarding healthcare free on Apple Podcasts, Google Podcasts, Spotify, or wherever you listen to podcasts. This podcast is produced by Sound Cartel for the Royal Australasian College. medical administrators.