• (introducing the topic) of advance care planning.
  • (explore concepts) relating to medical intervention and choices surrounding these.
  • (introduce solutions) for these so patients through completing the documents and recording their wishes. And finally to
  • (summarise) these discussions, ensuring patients have full comprehension, clarity and consent over the information recorded.
  • Commentary (Bill): and seeing that summary, it you know it looks like it takes a long time to go through those four different points but these different videos we’ve just seen help to illustrate and this can be done really quickly. So, you know, this is a good message for the doctors who are going to be watching this that they don’t need to think this is going to take ages and add a lot of time to their day. These are things that can be sorted out within a few minutes and, if they need to explore something in a little more detail that’s all the more reason why they should be doing it because if they don’t do that at all, they’re going to leave unclear ideas and won’t be sure about what someone wants.

    Commentary (Karen): I, that’s right and I think also in the long run it actually makes their job easier because they know if something does go wrong, they know who to call, they know what to do, and perhaps save a lot of time in you know difficult family meetings and difficult phone calls and all sorts of other things that sometimes arise because we don’t know what people want and we don’t bother to ask them when we could.

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    Commentaries from the experts:

    Scenario 1: 52 y.o. patient with history of COPD and muscular dystrophy, admitted for nocturnal BiPAP implementation.

    Scenario 2: 56 y.o. male patient with chronic renal failure, undergoing dialysis treatment.

    Scenario 3: 35 y.o. patient transferred to the ward following presentation at ED due to acute respiratory failure.

    Scenario 4: 67 y.o. woman admitted to hospital following sepsis on the background of GuillainBarr syndrome.

    Initiating conversations: Patient 1 – Ron, 52 year old man

    Narrative: When a patient’s condition changes, this can be a good opportunity to bring up a discussion about future treatments and to clarify previously recorded documentation relating to their decisions.

    Doctor: It’s unfortunate that you had to come back to the ward again. I think it’s probably about time that we had a bit of a discussion about how you are going with your breathing problems and what we do with your treatment from now on. It says here that your son is listed as your next of kin. Is he the person you would like us to be speaking to?

    Patient: I would like you to speak to my brother.

    Doctor: Oh yeah. What’s his name?

    Patient: Ah..Les.

    Doctor: Les. It might be good if we could get him in so we could have a bit of a chat. Would it be alright with you if I gave him a call so that we could all get together and have that talk? Would that be alright with you?

    Patient: Yeah. Yeah.

    Doctor: Do you have a bit of an idea yourself about what you’d like?

    Patient: Yes I do.

    Doctor: alright.

    Commentary (Bill): that’s a good example of how important it is for us to make sure that we know exactly who’s the most appropriate person and to nominate as their official next of kin because he had the son down, and in fact he was indicating his brother that he wanted to choose.

    Commentary (Karen): yeah. I agree. That was really good, and I also though it was really good the way he then went on to ask Ron about whether he actually knew what he wanted and could obviously then lead into having a more detailed conversation about that and offer to actually complete the advance care planning process with him.

    Commentary (Bill): yeah. It is important to not just stop at ‘do you know what you want’ and in fact to explore that and draw them out because maybe there are some things that he may want that can’t be achieved and it may also be that he is saying there are some things that he doesn’t want which on exploration may be based on misunderstanding about his condition.

    Commentary (Karen): yep. And I thought it was really good the way that he suggested that we actually invite Ron in to be part of the conversation so that Ron can hear it all first hand as well.

    Commentary (Bill): yeah. It makes a huge difference doesn’t it because even if they end up writing a whole lot of things down, it’s the family members that get called and spoken to by the doctors who are often really the conduit to their wishes being respected rather than just what’s been written down.

    Commentary (Karen): yep, and it also helps if he needs to make decisions that haven’t been specifically been discussed. It will help his brother potentially know how to make the decisions on behalf of Ron if Ron can’t be involved.

    Commentary (Bill): yeah.

    Commentary (Karen): I thought that was really good.

    Commentary (Bill): yep.

     

    Patient 2 – Andrew, 56 year old man

    Narrative: Discussions should be brought up when having consultations with patients’ about their current treatments, and should be done when patients are clearly well enough to make decisions.

    (no voice only machine sound in background for short period of time) 

    Doctor: Alright. That’s great Andrew. Thank you for all that information. There’s just one last thing I would like to check and that is, if something happened while you are in here having dialysis, is there someone that you would like us to call that would be able to make your medical decisions for you if you were unable to at the moment?

    Patient: Yeah.

    Commentator (Bill): That was interesting in the way the doctor asked if something was to happen and that’s one way and when you’re asking the question, you can get a sense whether the patient understands what you are talking about. But another way to put it I suppose would be to say more directly “if something suddenly happened and you deteriorated and couldn’t communicate with us for example if you had a stroke or sudden shortness of breath or something, and then you couldn’t speak what you would want then” rather than just saying that if something was to happen because that could mean what if the lights went out or the machines stopped or. I just think we need to make sure there is no ambiguity in what we’re saying to the patients in case they happen to misinterpret it.

    Commentator (Karen): yeah. I agree. And I also think that patients I’m sure can relate to things going wrong medically. So if we talk to them in a bit more detail and specifically I think it’s helpful

    Commentator (Bill): yep. In fact, even when you are being directly honest with patients it’s very rare for them to get upset about that, as long as you are putting it in a nice way. If you say they had a stroke or something they (pause) relate to what you are talking about so, things like things not going to plan is really a euphuism for things not going well.

    Commentator (Karen): yeah. It’s also good because this guy also has a chronic disease. He is living with illness and expecting that things might go wrong at some point and it has probably been talked about before.

    Patient: Yeah. I’ve got my wife and I’ve also got my, my oldest child. Although all my children are, are aware of this situation, but my wife and my oldest child are the contact points.

    Commentator (Bill): That’s a great illustration of the fact that we encourage people to appoint one person or maybe two people but we say to them how important it is that they have the rest of the family informed, both because it may be the other family members happen to be called at the time a decision needs to be made but also helps to avoid, disagreement between family members by sorting all that out in the cool light of day rather than when difficult decisions need to be made in the heat of the moment when something has gone wrong.

    Commentator (Karen): yeah I agree again. It’s good to have everybody on the same page (commentator (Bill): yeah) and the best person to help coordinate that is that patient themselves.

    Commentator (Bill): yeah.

    Commentator (Karen): the other good thing here is that the doctor put it in the situation of here while he is on dialysis but obviously things could go wrong, you know…..

    Commentator (Bill): anywhere.

    Commentator (Karen): …tomorrow or next week. It can extend out to that so it’s a good opportunity for the doctor to actually extend beyond the current situation as well.

    Commentator (Bill): so Karen do you think that the doctor should have said that explicitly like what if something happened even when you are not on the dialysis machine just to make sure that he understood that point?

    Commentator (Karen): I think, yeah, and particular because it is something that needs to be discussed and extended further and the doctor could do that reasonably easily.

    Doctor: Have we got her details in our system?

    Patient: You have, yes.

    Doctor: Oh great.

    Patient: and mobiles.

    Doctor: Excellent.

    Commentator (Bill): It is really important that the doctors having the discussion to make sure we actually have correct contact details because we can never make that assumption can we? I’ve certainly seen times where we’ve got the wrong name or we’ve got the correct name but the mobile phone number is old or they’ve moved house or we’ve got the wrong address. So really it is good to get that correct.

    Commentator (Karen): It is and it obviously needs to be updated regularly and we need to as health professionals take that responsibility.

    Commentator (Bill): I suppose there are times also that in thinking that we’re checking we’ve got the right number, when we say the name of the contact person they say, it has changed now, or that person has gone overseas or we are not together anymore or I’ve had a falling out with that child or whatever so, you can never check it too often I suppose.

    Commentator (Karen): I agree and, and again I think patients expect us to be checking this sort of detail regularly when we are admit them to hospital or when we deal with them so I don’t think they have a problem.

    Patient: and mobiles.

    Doctor: Excellent. And have you had discussions with them about what medical treatments you would or wouldn’t want under certain situations?

    Patient: Yes I have.

    Doctor: Ahh great. I will add them to our contact…

    Commentator (Karen): and again at this point the doctor needs to go and potentially continue and complete the conversation because the patient has had some thoughts about it and some discussions and we need to get some more detail at that point.

    Commentator (Bill): yeah. It’s not a good idea to make assumptions about what they’ve decided because again it may be based on misunderstandings about their condition. Uh, they may be asking more than is appropriate or less than is appropriate and by saying that I’m not saying we, the whole point is we don’t want to deliberately go against their wishes and the best way to ensure that is to hear what their wishes are and make sure it’s aligned with their disease and their treatment options, and to reassure them that even if they’re asking for less than we would think appropriate, as long as we have clarified we would clarify what their views are then we would indicate to them on their wishes, even if it is not what we want. Cause it’s not about us, it’s about them.

    Commentator (Karen): It’s all about them. Yeah.

    Doctor:…..contact details and I will have a discussion about that with the rest of the team so that we know in future we’ve got their numbers here and ready to go at the front of your history.

    Patient: Good.

    Doctor: Great.

    Commentator (Bill): He seemed to be quite relaxed about that didn’t he while sitting there having his dialysis. He seemed to be quite comfortable about having that discussion which is reassuring particularly knowing that these are real patients being filmed, without any acting you know being involved. So, often patients really welcome these discussions rather than being confronted or upset by them.

    Commentator (Karen): I think it’s good that we see a lot of patients with chronic illness and I think this just shows that patients are able to talk about these things even when they are feeling completely well and he’s clearly at this point he is happy having his treatment but there may be a point in the future where he may feel otherwise.

    Commentator (Bill): In fact it’s good to grab the opportunity while a patient’s reasonably well rather than waiting until they come into the hospital acutely unwell.

    Patient 3 – Wayne, 35 year old man

    Narrator: The information stored in patients’ records should be checked, clarified and possibly altered depending on the patient’s wishes. This ensures that patients’ decisions are understood and accurately reflected.

    Doctor: So, I have just about come the conclusion of my admission. There’s only one more thing I want to clarify. On your contact details it says it has your mother as your next point of contact and that would be the person that we would contact should you become more unwell. Is, is that correct?

    Patient: No it isn’t.

    Doctor: No, and who would be the best person that we contact?

    Patient: That would be my partner.

    Doctor: Your partner. Okay. The reason why I ask is that you…

    Commentary (Karen): this is another example where the details that we had to contact were incorrect and clearly goes to show that it’s important to clarify each time that somebody comes into hospital.

    Commentary (Bill): yes.

    Commentary (Karen): cause clearly he didn’t wish it to be his mother as his contact person.

    Commentary (Bill): in fact, it’s, it’s a perfect example because this video hasn’t actually hasn’t been scripted. This, this is a real error in the system and he’s just hearing it for the first time that we’ve got the wrong contact person and he’s, and you can see from his face that he’s concerned about the fact that it’s incorrect, and he immediately tells us that it is his partner.

    Doctor: you’ve obviously come into the hospital unwell, and we are doing the admission as we speak but, with most hospital admissions there, we do expect you to get better but in the unforeseen event that you do get worse, and you are unable to make any medical decisions by yourself, this person would be the best person that we contact that has your best interests at hand. So is your partner, would your partner be an appropriate person to list as your next of kin to be able to make those decisions on your behalf?

    Patient: She would be the most appropriate.

    Doctor: Okay.

    Commentary (Karen): and at this point, what the doctor could of done is actually found out from, from Wayne whether he actually wanted to take the situation further and whether he wanted to appoint her as his substitute decision maker and could have given him that opportunity.

    Commentary (Bill): I really like the way the doctor (pause) explained the roll of the substitute decision maker before he then checked that his partner was the right person, so talking about the fact they need to know what his wishes would be because they might need to make a decision in the future.

    Commentary (Karen): yeah, yeah.

    Doctor: No worries. I’ll put, I will change the number. Okay. I think we’re done.

    Patient: Thank you.

    Patient 4 – Maureen, 67 year old woman

    Narrator: in the instance that a patient is unable to communicate verbally, but is still cognitively capable, appropriate steps must be taken to ensure their wishes are known and recorded.

    (no voice, doctor walking to bedside)

    Doctor: Hi Maureen. I’ve just come to have a chat to you about your consent for your PEG insertion, so, that’s the feeding tube which is going to be put into your stomach. But, before we talk about that I thought it a good opportunity to discuss if in the event that something were to not to go as planned if you’ve thought about what things, that what your decisions would be about certain interventions, and you know if you have thought about it..

    Commentary (Bill): I suppose the first comment I would make Karen is that the fact that the doctor just used the term interventions, and it reminds me how we need to make sure we don’t use medical terminology or, or, jargon and that we’re quite clear with patients because interventions might mean anything. She might think it means that a drip might be put in, but I’m sure he means resuscitation and intubation and ending up in intensive care.

    Commentary (Karen): yeah. So he needs to be a lot more specific about what he actually means.

    Commentary (Bill): yeah.

    Doctor:…and whether you’ve discussed it with anyone.

    Patient: (nods, I have)

    Doctor: You have. Okay…….so I’m sorry, and you are?

    Jenny: I’m Jenny, Maureen’s friend. We’ve talked about this before.

    Doctor: Okay. Terrific.

    Jenny: We’re very close.

    Doctor: and she’s elected you if I understand to be her spokesperson and this is in the event that you (Maureen) are unable to. So you know whilst we can communicate that’s fine. But just if you weren’t able to, I understand Jenny will be your representative?

    Patient: (nods, yes)

    Doctor: okay. Good.

    Commentary (Karen): it’s really good there because the doctor again just reinforced that what you know, the representative and the role Jenny, Maureen’s friend would actually have.

    Commentary (Bill): Yeah.

    Commentary (Karen): So he’s just reinforced to make sure it is all just really clear. So that’s quite good

    Commentary (Bill): And he’s, he’s checked both with the patient and with the substitute decision maker. In, in this particular case it’s interesting that the patient’s friend may not only be a substitute decision maker when she becomes incompetent, but right now if she has difficultly expressing what she wants her friend is really acting as sort of a spokesperson to make sure the message gets across clearly.

    Commentary (Karen): Yes.

    Doctor: Terrific. Thank you for that. That helps us.

    Final slide (Note: blank screen with voice)

    Once these discussions have been initiated doctors can comfortably formalise patients’ wishes by

    • (introducing the topic) of advance care planning.
    • (explore concepts) relating to medical intervention and choices surrounding these.
    • (introduce solutions) for these so patients through completing the documents and recording their wishes. And finally to
    • (summarise) these discussions, ensuring patients have full comprehension, clarity and consent over the information recorded.

    Commentary (Bill): and seeing that summary, it you know it looks like it takes a long time to go through those four different points but these different videos we’ve just seen help to illustrate and this can be done really quickly. So, you know, this is a good message for the doctors who are going to be watching this that they don’t need to think this is going to take ages and add a lot of time to their day. These are things that can be sorted out within a few minutes and, if they need to explore something in a little more detail that’s all the more reason why they should be doing it because if they don’t do that at all, they’re going to leave unclear ideas and won’t be sure about what someone wants.

    Commentary (Karen): I, that’s right and I think also in the long run it actually makes their job easier because they know if something does go wrong, they know who to call, they know what to do, and perhaps save a lot of time in you know difficult family meetings and difficult phone calls and all sorts of other things that sometimes arise because we don’t know what people want and we don’t bother to ask them when we could.