Palliative care barriers and understanding baby cues
Think:Health cultivates and articulates the best in health research and news.
The following episode, which aired on Sunday 28 February 2016, features:
- a new study in heart care which reveals that proper diagnosis and treatment of heart failure is falling short (01:10); and
- an exploration of palliative care for people with intellectual disabilities (09:05); and
- how understanding the cues of your baby is crucial for developing a relationship (19:55).
Academic guests:
- Professor Cathrine Fowler - Professor for the Tresillian Chair in Child and Family Health Nursing at the UTS Faculty of Health.
- Dr Tim Luckett - Senior Lecturer at the UTS Faculty of Health, Senior Research Fellow in the Centre for Cardiovascular and Chronic Care.
- Dr Phillip Newton - Associate Dean (Research) and Director of Research at the UTS Faculty of Health, Senior Research Fellow in the Centre for Cardiovascualar and Chronic Care.
- Professor Jane Phillips - Professor of Palliative Nursing at the UTS Faculty of Health, Director of the Centre for Cardiovascualar and Chronic Care.
- Michelle Weise - Research Associate and Lecturer at the University of Sydney.
Host/s:
- Ellen Leabeater, 2ser
- Jake Morcom, 2ser
START OF TRANSCRIPT
[Introduction]
Ellen Leabeater: Think - Think Health on 2ser 107.3. Hi and welcome to the show I'm Ellen Leabeater. Today on the program an exploration of palliative care for people with intellectual disabilities and how understanding the cues of your baby is crucial for developing a relationship.
Cathrine Fowler: For me it's about looking at developing a good relationship between you and your baby, because it's the baby's first love affair.
Ellen Leabeater: As one of the most common costly and potentially fatal conditions, heart failure is a massive health concern. More than 350,000 Australians suffer from heart failure with 30,000 new cases diagnosed each year. A new study called the New South Wales Heart Failure Snapshot assessed 24 hospitals across the state and although huge advances have been made in the world of heart care, the study found proper diagnosis and treatment is falling short.
Phillip Newton is the Associate Dean of Research in the Faculty of Health at UTS. Phillip was part of the study and said heart failure is hard to diagnose because it's a syndrome, to a single disease. He spoke with Jake Morcom.
Phillip Newton: So heart failure is primarily considered a condition of the elderly. The majority of people with heart failure will be 65 plus. You will get people who have had congenital heart disease since birth. So have had problems with the heart since they were born and then you'll get people in their 30s and 40s who have had some sort of injury to their heart, after a massive infarct, so heart attack. But primarily it's people who are much older than that.
Jake Morcom: So in this study you looked at this across a New South Wales an ACT landscape?
Phillip Newton: So we had 24 hospitals across New South Wales and the ACT. These were a combination of the big hospitals in Sydney, so the big tertiary referral hospitals, but we also had a number of smaller, rural hospitals as well. So it was trying to get a picture of heart failure across the state.
Jake Morcom: Something that I found interesting is that I would have thought heart failure as a health issue would be quite high up on the agenda there, but in fact, this is the first snapshot ever of heart failure patients in New South Wales and the ACT and there isn't currently a national snapshot study into this. So why has it taken so long for something like this to happen?
Phillip Newton: So one of the problems with heart failure is it's not a single disease. It's actually considered to be a syndrome, because it's a number of different processes within the body that all get made up to get a diagnosis of heart failure. One of the problems is people cannot agree on actually what heart failure is. So when you're looking at trying to get national statistics, if you can't even tell people with a clear definition of what it is, it makes it really tricky. So while lots of people over the last 20 or 30 years have been wanting to do a study like this, it's been really challenging because they can't agree on what heart failure actually is. So when we were designing the snapshot study we decided to take a more pragmatic approach.
We really wanted to do - have a real world picture. Rather than a text book definition of heart failure or a guideline based definition, we decided really to go for a broader definition, a real world picture as we called it. So essentially, if it looked like heart failure, it was being called heart failure and got treated as heart failure, they got included in the snapshot. Now to try and then determine if it was actually heart failure, each of the hospitals we had, had an onsite cardiologist and then they would go back and review the cases afterwards and determine if it was actually heart failure or not.
Jake Morcom: Is it hard to determine if it was heart failure or something else, because a lot of these patients had multiple disorders at the same time?
Phillip Newton: Yep.
Jake Morcom: So differentiating what it is that they have and what they need treatment for?
Phillip Newton: Yep. So that's one of the problems that I talked about earlier in terms of the definition of heart failure and what exactly it is. Because these patients don't just have heart failure, they have lots of what we would call comorbidities, so other conditions that can have very similar signs and symptoms to heart failure. So you're right it can be really challenging to say whether it was just heart failure that was the cause, or whether there was something else. But that's why we had the cardiologist make the determination afterwards as to whether it was heart failure or not.
Jake Morcom: Is this the big reason also in the study as to why there was underuse of a lot of the prescription medications that the heart failure patients, they wouldn't be taking them. So was this because they were trying to determine what it was, or was it because the patients weren't taking the medications when they needed them?
Phillip Newton: So there's a couple of questions in there. In terms of the patients taking the medications, it was about 20 per cent of the patients cause for their admission, so the reason why they came into hospital was because of something to do with their medications. Either they weren't - they hadn't been taking them and then their condition got worse, or they had perhaps been taking too much of the wrong medication. So some sort of medication error, from the patients' perspective. In terms of underuse of evidence based therapy in heart failure, there's really only good evidence that these drugs in about half of the population.
So there's two broad types of heart failure. One where the problem is its pumping issue, so the heart's not pumping properly, the other one is where it's a filling issue. So for people with heart failure where it's an issue with the pumping, there's good evidence around what drugs they should be using and should be on. For the ones where it's a filling issue, there's actually no good evidence that anything works particularly well in these particular patients. So when we're talking about underutilisation of evidence based therapies, we're talking about in the group where there was an issue with the pumping of their heart.
There are a number of different drug classes these patients should be on according to the guidelines and it was really - it was about 60 per cent of the patients, 50 to 60 per cent across those different classes were actually on those drugs. Now the problem with the study is we can't necessarily know the reason why, because we didn't ask perhaps the right questions in for that specific bit of information. But looking at the data and comparing our data to other studies across Europe and the US, in particular, it would certainly seem that they've been underutilised.
Jake Morcom: So another issue or something that I feel is across hospitals in general is inter-hospital variation length of stay and so that meaning how long the patient should be staying in hospitalised care, or when they're able to leave. So was this something that you came across in this study as an issue?
Phillip Newton: Yeah. So across the 24 sites, the length of stay varied on average for each of the patients at the particular hospital, between three days and 12 days. So quite a big difference across the different hospitals. Now the hospitals that were in the study as I said, some of them were small rural hospitals and then you had the large hospitals in Sydney. So it's a little bit hard - you've got to be a little bit careful in terms of looking at variation in stay because there can be differences in how sick the patients are and resources available as well. From the data it doesn't look like it's just related to the size of the hospital, so it doesn't look like that's the major contributor.
So obviously the bigger hospitals are more likely to get the sicker patients or a higher proportion of really sick patients who may be more complicated and therefore need to be in hospital longer, but that doesn't look like by itself is a major contributing reason.
Jake Morcom: You've aggregated this information now and sitting as the first snapshot study that's taken place in New South Wales and the ACT, also nationally. Does that give momentum for more studies to take place to look into this, into heart failure in particular?
Phillip Newton: Yeah. So we're really wanting to replicate this study across Australian and New Zealand, to do a bi-national snapshot. There's a by-national working party that's really trying to design that study and we're hoping to run that in the next couple of years, but it's going to be dependent on us being able to fund the study.
Ellen Leabeater: Phillip Newton, Associate Dean of Research in the Faculty of Health, speaking to Jake Morcom.
[Voice over and music]
Ellen Leabeater: For people with an intellectual disability, death can be a daunting prospect. How do you explain what death is? That's it an inevitability that can happen to anyone, including you. It's also difficult for clinicians working in palliative care to understand the needs of people with intellectual disabilities at the end of life as there are many communication barriers.
[Music]
Ellen Leabeater: Do you remember the first funeral you went too? Do you remember when you understood what death was? Do you remember when you worked out that you to would one day die? Now imagine if you knew none of this until it was your time to go.
[Music]
Ellen Leabeater: Historically we as a society have sheltered people with an intellectual disability from knowing about death. Thinking that it may cause distress when they find out. It creates a problem when suddenly you are dealing with someone who has a terminal condition and no concept of death.
Michelle Weise: I think that's where historical avoidance of this topic has met with the pointy end of exactly that difficulty because it is the case that it's a little bit of too little too late. If a person has been diagnosed with a palliative condition, that is the absolute worst time that you want to be starting teaching these concepts of (a) what death is (b) the expectations around your palliative care and that you are going to die. All of those sorts of things need to be learnt well prior to that terrible time where a palliative diagnosis is given.
Ellen Leabeater: For people without an intellectual disability, we probably remember our first funeral, but maybe don't remember when we understood death and our own mortality. It's just something that we pick up. Michelle Weise likes to call it the tapestry of understanding about death.
Michelle Weise: Well I guess it's just about comparing to how perhaps you and I have learnt about dying - death. So I was as a, for example, I learnt about it when pets on the farm died. When extended family died, grandparents and so on. I mean as we get older we might be involved in the care of people who die and then as we, of course get older too, we see it on television programs on movies and you might understand it from biology classes at university, a whole of places. The general community gradually builds a tapestry of understanding about dying and death.
Ellen Leabeater: Michelle is a Research Associate and lecturer at the University of Sydney. She's been researching how much people with an intellectual disability understand about death.
Michelle Weise: There are parts of death that people with intellectual disability understand less than the rest of the community, and that's largely associated with the learning difficulties that are associated with the disability itself.
Ellen Leabeater: The hardest thing for people with an intellectual disability is to grasp that they will die.
Michelle Weise: So sometimes if you ask the question of, do you understand that all people die? Then that might be understood. But when you ask the question of, do you understand that one day you too will die, there are many people who don't understand it, that it actually happens to themselves. That when we say that the rule applies to everybody, we actually do mean absolutely everyone.
Ellen Leabeater: But the best way to overcome this is exposure to death over an extended period of time.
Michelle Weise: Our best recommendation is that you start early. All the rest of us learn about dying and death when we're very young and all the way through life. The rules are no different. People with intellectual disability learn best if they're taught in the natural conditions in which an event occurs, and that applies to dying and death. So it means attending grandma's funeral when you're five years old. Driving through a cemetery and someone explaining to you the difference between cremation and burial. It also means that you might need - because you have a disability - repeated opportunities to learn.
So we know best that people with disability learn better in natural conditions if they have repeated opportunities we use concrete language. So when we talk about dying and death, we use those words, we don't use metaphors that are associated with it like kicking the bucket and six feet under and all of those things.
Ellen Leabeater: So it's great if a person with a disability has an understanding of death once there is a need to access palliative care, because here is where another challenge begins, understanding the needs of the patient.
Tim Luckett: The needs of people with intellectual disability are really no different form anybody else with regard to palliative care by and large, there are just a few issues that set them apart.
Ellen Leabeater: Doctor Tim Luckett is a Senior Research Fellow in the Faculty of Health at UTS. Before we go any further, what exactly are we talking about when we say intellectual disabilities?
Tim Luckett: So a good example would be people downs syndrome, people on the autistic spectrum would be perhaps two of the more frequently encountered intellectual disabilities. But there are a range of others making up between one and three per cent of the general population.
Ellen Leabeater: One to three per cent of the population is quite small. So it's no surprise that clinicians are often unsure of how to treat people with an intellectual disability.
Tim Luckett: Because people with intellectual disability are in a fairly small minority, many health professionals involved in providing palliative care don't have much exposure and certainly very often don't have much training in how to communicate with people with intellectual disability in general, never mind with specific intellectual disabilities such as people on the autistic spectrum. So there's definitely a need there for more training in how to communicate around death and dying in ways that people will understand.
Ellen Leabeater: Relationships between palliative care staff are especially important because you are dealing with people who are in a lot of pain, yet can't communicate that to staff.
Tim Luckett: People with intellectual disability may have a reduced ability to communicate how they're feeling and their needs, which includes symptom management, not just pain but a range of symptoms. Fortunately there are some tools to help health professionals that are purpose built disability distress assessment tools, which work based on facial expression, behaviours and so forth, where the person is not able to verbally communicate.
Ellen Leabeater: It goes both ways. Palliative care staff may not know about disability in the same way disability workers don't understand palliative care. Michelle Weise again.
Michelle Weise: We've got a little bit of I guess early evidence, and this is not definitive as yet of the possibility that we've got disability care workers who know a lot about caring for people with intellectual disability, but not very much about palliative care. Then we've got the palliative care health professionals sector who know a lot about palliative care, but might not know a lot about intellectual disability.
Ellen Leabeater: But on the whole both services work well together. Jane Phillips is the Director of the Centre for Cardiovascular and Chronic Care and a Professor of Palliative Nursing at UTS.
Jane Phillips: You're not going to meet a lot of palliative care clinicians who've got intellectual disability experience. But I think what you need to appreciate is that palliative care is actually about partnering with the patient or the person's usual health care [system] and people with intellectual disabilities have had these disabilities for, often for life and have had a range of support people around them, including their own family members, care workers, disability support workers, their general practitioner, a whole range of other specialists and it's not palliative care's role to come in and take over. But rather to partner with these - a person with intellectual disability's usual care team, to optimise their symptom management.
Ellen Leabeater: Jane says that it's not just about helping the individual with a terminal illness, but also helping someone with an intellectual disability cope if they're carer is going to die.
Jane Phillips: When I was a clinical nurse consultant working, one of patients that I was looking for had cared for her son, he had a profound intellectual disability and she had cared for him her entire life and she was now a woman in her late 70s who was dying. So her son had actually lived with her for his entire life. Now my role as a palliative care nurse was really to support her as she worked with his care team to ensure that he was appropriately placed and his housing needs were attended too, well before she actually died.
Ellen Leabeater: Jane says it's important that anyone who works in this area should be well informed about the possible palliative care services available and often it's the GP who is well placed to do this.
Jane Phillips: Sometimes those workers may not be really cognisant of the full gamut of services that would be available more from the health perspective and particularly palliative care. But that's obviously where having the person, having access to a well-informed GP who's got a good understanding of the local networks and the local palliative care team is actually really able to link that person up to ensure that they get the support they need.
[Music]
Ellen Leabeater: Death doesn't discriminate and talking about it helps everyone.
Michelle Weise: It doesn't matter who the person is and whether they have an intellectual disability or they don't, I guess I'd just like to encourage people to talk about it. To start to break down the barriers of this taboo topic, so that would be my encouragement to everyone.
[Music and voice over]
Ellen Leabeater: From the moment your baby is born they're ready to communicate with you. Their movements, their cries, their smiles, every action your baby makes has meaning. They're also very good at telling you what they like and what they don't like. Understanding your baby's cues may be overwhelming at first, but it is crucial to developing a strong and healthy relationship. Cathrine Fowler is the Professor for the Tresillian Chair in Child and Family Health at UTS. She spoke with Jake Morcom about...
[Over speaking]
Ellen Leabeater: ...identifying the needs of your baby and how exactly the parent/infant attachment begins.
Cathrine Fowler: I mean I think the term attachment is really overused and infant attachment it's about developing a secure relationship with the person that is going to be provide you with the most care and that endures through your lifetime. It's the infant attaching to the parent.
Jake Morcom: So what practices or communications are we talking about in this instance, where this attachment is initially developed?
Cathrine Fowler: Yeah. A lot of parents just do it naturally. It's about being present and it's about being responsive and sensitive to the infant's needs, and being able to keep the infant in the parent's mind. To think about what it might feel like for the infant. If the infant is distressed, what does that feel like for the infant, rather than, just thinking it's difficult and I don't like hearing the crying and the infant is trying to get at me.
Jake Morcom: How does this attachment change over that period of infancy? Because like you were saying there, it's a number of different things which take place over that time, you know it's responding to whether the baby is crying, even whether they're smiling and developing that attachment. In those formative years, how does that attachment evolve?
Cathrine Fowler: Well it just evolves naturally and whether it's strong or a bit more disconnected or insecure, but I - my preference is not to talk about attachment with parents. I don't think that it achieves very much, because it's just really theoretical words and language and for me, it's about looking at developing a good relationship between you and your baby and if you focus on the relationship - because it's the baby's first love affair with their parent and if you focus on that, rather than thinking, is this a secure attachment or an insecure attachment, which is really complicated work.
I certainly would never label someone -a parent that's having a secure attachment, their infant having a secure attachment or an insecure attachment - you really have to be very skilled at judging those attachments and you can't do that until - in the first year of the child's life anyway. For parents it's about thinking about the relationship and what a good relationship is. There are things that parents can do, like looking at the infant in their eyes, being present. If a baby cries, really responding fairly quickly to the baby. Taking the time to talk to the baby.
We know that talking to a baby really is very powerful and really helps them develop their language skills, which then helps them transition to school. So those things for me are much more important than worrying about attachment.
Jake Morcom: So it's about ensuring or creating that emotional and physical connection between the parent and the child?
Cathrine Fowler: Absolutely and it's often really hard for parents, because parents they're doing something that's very new. They're often quite anxious about the baby because it's a huge responsibility having a baby and often babies don't respond the way that parents think they're going to respond, or the way they've been told that babies respond from the media. So their expectations are a bit skewed compared to what's going to happen with a baby.
Jake Morcom: One of those situations might be where the parent would see the child being overly reliant on the parent or overly attached. What are those situations like and how does the parent normally try to deal with those situations?
Cathrine Fowler: In the first year of life particularly, I worry when people are concerned about the baby being overly attached. I mean that's what parents are there for. In the first year of life, the parents act as the baby's regulation system. So the baby looks to the parent, to their face, to see that they're safe. So if they're in a grounded shopping centre, it's really important if possible that the baby can see the parent's face. So for instance you would turn the baby around in a pouch, rather than having it out - facing outwards.
So the baby can see, the parent can reassure the baby. Having it on their back is fine as well, because the baby has a sense of being able to connect with the parent. Whereas when they're facing outwards, they can't do that. Babies are very sophisticated by learners, but also communicators. Babies have lots of cues that they give parents and we know that parents that are - seem to be natural parents and manage parenting fairly easily, often are tuning in to the subtle engagement and disengagement cues of a baby.
So they get in early before a baby has to accelerate to a potent disengagement cue like crying. Babies come with these cues and they're - as I said they're subtle - and there's potent ones and there's engagement cues which says I want to play, come and be with me and so that's very obvious things like smiling and reaching out for the parent. They're really potent engagement cues. There are a whole lot less engagement cues than disengagement cues. As parents we're much smarter at picking up the engagement cues, the smiles, than we are at the disengagement cues. So there's subtle and there's potent disengagement cues. So a cry is a really potent disengagement cue.
Jake Morcom: Talking about feeding and sleeping in particular, I guess when it comes to the parent trying to help the child and then also have them perhaps sleep in another room is when it might become an issue. So there's a number of different things that can happen or that the parent can do different methods or such and there's one, where there's a lot of talk about called parental presence.
Cathrine Fowler: Yes.
Jake Morcom: So can you just explain a little more about what that is and how it's used in practice?
Cathrine Fowler: In the early months of having a baby and even up to 12 months and often in toddler [unclear] it's absolutely fine for the baby to sleep in the parents' room. Lots of parents find that that's - and culturally that's absolutely fine. But if the parents decide it's time to get the child into their own room and even in - when they're sharing the room, often children don't want to go down to sleep because the parents are not there. So it's about being there. It's about having a physical contact with the baby, your hand on the baby. A vocal contact with the baby, so that you're making soothing sounds to the baby. You can do that and then gradually withdraw.
At Tresillian, sleeping and feeding issues are the main reasons why parents come in. I have concerns about lots of prescriptive ways of doing things. I think we have to read the baby and certainly Tresillian that's a shift that we're trying to - we're getting the nurses and the nurses are doing that, is about educating the parents about the cues of the baby and what's the baby saying to you. It's also about, thinking about the child's state of consciousness and there are six states that we all have. So they're - the baby is really deeply asleep, which is a non-rem state. There's no movement of their eyes. Then there's the rem state, which is rapid eye movement and then there's drowsiness and then there's quite alert, and then there's active alert.
A baby when they're in the really deep, deep sleep of non-rem, eye movement sleep, a good way to think about that is if you've ever taken a toddler in a car and they've fallen asleep and you've picked them out of the car and they're often really deeply asleep and you can move them into their cot without anything - you could turn them upside down and they wouldn't wake up. They're just so deeply asleep, they're like a rag doll. That's a non-rem sleep. Rapid eye movement sleep is when they are very lightly asleep and it's just a part of the cycle of it and we go through this as well.
We as adults often put quite a few sleep cycles together and we actually wake up in the middle of the night and we don't even know we've done that and we fall back to sleep. So we have a whole lot of sleep cycles and our sleep cycles are about 90 minutes. Babies might do one or two cycles or only one cycle during the day when they're put down for their sleep periods and then they wake up. As they get older, there's more consolidation so they learn to put more sleep cycles together.
Ellen Leabeater: That's Cathrine Fowler from UTS speaking there with Jake Morcom.
[Music]
Ellen Leabeater: Don't forget if you'd like to find out about anything you heard today, you can visit us at 2ser.com/thinkhealth. You can also tweet us @2ser. Please remember that journalists are not doctors. If this show has made you ask questions, which is great, go and see your GP. Think Health is produced with the support of the University of Technology Sydney, Faculty of Health. If you've liked what you've heard today, we'd love to hear from you. Rate and review us on iTunes.
END OF TRANSCRIPT
