This week is Palliative Care Week – we look at why end of life discussions are important for people with dementia. And, how does high internet use affect the mental health of teens? Finally, we look at whether stricter regulations are needed to discourage the promotion of breast milk substitutes.

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Presenter/Producer: Ellen Leabeater
Producer: Ninah Kopel

Speakers:
Jane Phillips- Director, Centre for Cardiovascular & Chronic Care, Faculty of Health UTS
Meera Agar- Professor, Faculty of Health UTS
Wavne Rikkers- Senior Research Analyst, Telethon Kids Institute
Lawrence Lam- Professor of Public Health, UTS
Dr Larry Grummer-Strawn- Technical Officer, World Health Organisation Department of Nutrition for Health and Development
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Ellen Leabeater: Hi, welcome to the show. I’m Ellen Leabeater. Today, how excessive internet use is harming the mental health of adolescents.

Lawrence Lam: For those young people that actually exhibited a high degree of signs and symptoms of internet addiction, nine months later when we reassessed them, they actually have some depressive symptoms showing.

Ellen Leabeater: And whether we should have a law against the inappropriate marketing of breastmilk substitutes.

This week is Palliative Care Week and it’s an important reminder about the need to plan for end of life care. This is especially relevant for people with dementia whose wishes might not be known by family. The Centre for Cardiovascular and Chronic Care at UTS is holding a forum on Monday about what is needed to improve care planning for people with dementia.

To discuss some of the issues, Ninah Kopel was joined by Jane Phillips and Meera Agar from UTS.

Jane Phillips: Hi, I’m Jane Phillips, I’m the professor of palliative nursing at UTS.

Meera Agar: Hi, I’m Meera Agar, I’m the professor of palliative medicine at UTS.

Ninah Kopel: Professors, you’re both experts when it comes to the realm of palliative care. Why is it that we need a whole week to dedicate to this issue?

Jane Phillips: A week will never be long enough. It’s really about good quality at the end of life and living well, and all of us will die at some point in time. I guess what’s happened over the years is that we’ve become a death-defying society and people feel quite uncomfortable about it. So this is an opportunity for the community, for health professionals, for families to really think about the implications, about the things that you want to do in your life, to enjoy, but also how we can actually make it better for people as they’re deteriorating and dying.

Ninah Kopel: Let’s talk about care planning and what that means. Professor Agar, what does that mean and how should we be approaching this in a way that’s more supportive for families?

Meera Agar: Care planning covers a range of issues. It’s about planning for your health, but also planning for the way you want to live your life. So that might be around financial issues where you want to live. I think really the thing we’re trying to highlight is that this is a conversation, it happens over a period of time and includes people’s loved ones. Sometimes it’s a difficult conversation and so we’re trying to bring this to the forefront and help people feel supported in having these conversations.

Ninah Kopel: That discussion about how they are going to approach the end of their lives obviously is something that does have an impact on the family. What kind of planning needs to happen even before dementia is really something that’s an everyday issue in the lives of the family?

Meera Agar: I think really the critical thing is that the person with dementia needs to be involved in those discussions when they’re able. Care planning is over the course of the whole illness. Yes, the end of life care period is important, but it shouldn’t be separated or not integrated with the care planning across the whole illness. It’s about revisiting plans as things change and being comfortable to have those conversations.

Ninah Kopel: Yeah, Professor Phillips, is that something that comes into your research, to do with what type of medication is involved?

Jane Phillips: As a nurse, nurses are much more involved in the administration of medications, whereas doctors are the prescribers of medications. But we may have, as nurses, definitely have conversations with families and patients about their medications. But that’s really a medical decision.

I just really wanted to get back to the point Meera made in terms of planning. I really can’t stress enough that it is actually really about starting to understand what your family’s wishes are, even while you’re actually well. Because it does make it so much easier if it is a series of conversations.

Ninah Kopel: What are the questions that people come to health professionals, to nurses with when they are confronted with the situation that their loved ones do have dementia?

Meera Agar: I think they want to know what the future will bring, the changes that they might see. But I think really critically, they want to support that person in the best way that they can and feel empowered to be able to do that and be able to navigate the healthcare options that they have. But not only the healthcare options.

They want to know how to navigate financial institutions, how to seek legal advice, how to support someone doing their own shopping in a supported way, be able to travel on a plane. These are all things that we take for granted and do on a day to day basis without any difficulty, but to allow the person with dementia to still enjoy all of those things in a smooth and non-distressed fashion takes a lot of information and support and empowerment.

Ninah Kopel: What types of medication actually exist in this realm, how can we ease people’s suffering?

Meera Agar: It will be very individual, the symptoms that are experienced in advanced dementia are very varied and very individual. I think the real critical thing is that dementia is a unique illness and we need health professionals, nurses, doctors, allied health staff who actually understand dementia, its trajectory and the biological basis for what the person is experiencing and use medications wisely. But also a whole range of non-medication measures are actually very critical and probably actually have better evidence in supporting people to experience the least amount of distress and symptoms.

Ninah Kopel: So what are those processes, Professor Phillips?

Jane Phillips: Sometimes it’s actually really the way teaching not only doctors and nurses, but also families, how to interact with a person with dementia, and how to respond and change their approaches as the person is actually deteriorating and their condition is changing. So as Meera said, a lot of it is around non-pharmacological approaches. It’s the way in which you speak to them, touch them. But it’s actually also about playing to people’s strengths. Because there will be parts of their brain that will be functioning reasonably well, and we actually need to enable people to be able to optimise those activities.

Ninah Kopel: One of the things I think you’re hoping to address next week in the panel is the idea of involving that patient in their own decision making process. So what are the things we need to think about in ensuring that the patient isn’t being left out of their own life decisions?

Meera Agar: One of the areas we’re going to raise – and it’s a very rapidly evolving area – is the idea of supported decision making. That this is not a black and white area, that you have decision making capacity on one day and then suddenly the next day you don’t. People’s ability to be involved in decisions often is more related to the way the people involved in those decisions approach that person, present the information in a way that they can understand and value their contribution. So there’s a lot of research looking at understanding how to do that better and training clinicians, legal professionals and the broader community in a broader engagement.

Ninah Kopel: Professor Phillips, anything to add?

Jane Phillips: No. I’d probably just go back to the other point; if you’ve had these conversations over a longer period of time, I guess if you’re the family member having to make some hard decisions as the person has deteriorated, you’re often much more – you feel more comfortable because you’re actually able to base your decisions on the wishes of the person.

Ninah Kopel: Are you both optimistic about the direction that this type of conversation is having, are we making progress?

Jane Phillips: Well, by virtue of being here and speaking about it, I think that’s a great thing. I think for too long, many people who have probably been living with dementia or caring for someone with dementia have probably felt quite isolated. But it affects so many people in our community and we’re still trying to understand this very complex condition. That the more we can talk about it, the more we can support people, and the more we can engage them – and as I said earlier, playing to their strengths – then the better it will be for the person with dementia and their family.

Meera Agar: The forum is really aimed at bringing all of those people, and people with dementia and their families, to the same table with equal voice to actually say, we’re making great progress but let’s challenge everyone to really exponentially increase that progress so that it can impact on everyone who is living with dementia as quickly as possible.

Jane Phillips: It has implications for the way we train our health professionals, because for many of us, dementia wasn’t such a huge issue. So we need to be preparing our undergraduate nurses and doctors and allied health professionals to really have a sound understanding of dementia and the needs of this community. So many people don’t realise dementia is a terminal disease. If you say cancer, most people – even though cancer has got better outcomes, so many of the cancers are now about living with a chronic disease – most people, when you hear cancer, think that it’s associated with death. But when we say dementia, people don’t actually make the link that it’s actually a terminal illness.

Ninah Kopel: That’s also why I suppose it’s tied to palliative care, right, end of life care, because it is something that will affect people towards the end of their life.

Jane Phillips: Yeah, and it’s not really – yeah, well, we need to think about a palliative approach for all of these people, because ultimately they’re going to die with dementia, if not of dementia.

Ellen Leabeater: Ninah Kopel speaking there to Jane Phillips and Meera Agar.

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Ellen Leabeater: How much time have you spent on the internet today? Did you use it at work and have the luxury of switching off at home? Or did you use it at work and then well into the night when you got home? For many school-aged children, the internet is both an educative tool as well as entertainment, so it can be hard to switch off, and it could be causing problems with young people’s mental health.

Ellen Leabeater: Ah, the internet, useful for researching a topic of interest, mindlessly watching YouTube videos and playing online games. But what happens when the internet takes over your life and you spend more time online than off? A recent report by the Telethon Kids Institute in Perth has found over 78,000 Aussie kids use the internet or game at problematic levels and it has a negative impact on their psychological wellbeing.

Wavne Rikkers: Well, the good news is that we found only about 4 per cent of kids exhibited online problematic behaviour. But that actually equates to around 78,000 kids across Australia which is actually quite a large number of kids, even though it’s only a small proportion.

Ellen Leabeater: Wavne Rikkers is a senior research analyst with the Telethon Kids Institute. She says that they have surveyed children aged 11 to 17 and asked them questions about their online behaviour to determine if it was problematic.

Wavne Rikkers: We asked kids aged 11 to 17 five questions about their behaviours of when they went online or if they were playing electronic games. Then we asked some questions like, how often did they go without eating or sleeping? Did they feel bothered when they weren’t online? Did they use internet when they weren’t really interested? Did they feel that they spent less time with family and friends or doing schoolwork than they should? Have they unsuccessfully tried to give up spending so much time online? So if they exhibited four out of those five behaviours, we define that as problematic online behaviour.

Ellen Leabeater: You would be forgiven for thinking that problematic is an understatement for some of those behaviours, like going without food and sleep to continue gaming, for example. But internet addiction is not clinically recognised as a disease because there is not enough evidence to support it yet.

Lawrence Lam: At this moment, internet addiction hasn’t been accepted officially as a clinical diagnosis. But a lot of clinicians as well as researchers in the field really consider internet addiction as a term to describe people who have been using the internet or getting onto the internet for too long and using it too extensively, to the extent of causing problems to their own self as well as to all the people around them, then affecting – and it’s also affecting their daily life and daily functioning.

Ellen Leabeater: So what influences an adolescent to develop an internet or gaming addiction? Lawrence Lam says the signs are not dissimilar to other risk-taking behaviours, like alcohol and drugs. Lawrence Lam is a Professor of public health at University of Technology, Sydney.

Lawrence Lam: Having communication problems with parents and also having issues with peers, not happy with the school, their school performance normally will be lower for those who are highly addicted to the internet, and they have less friends.

Ellen Leabeater: The Telethon study found that 10,000 adolescents had attempted to take their life and that there was a link with their internet use. However, the limitation of the research is that they weren’t able to look at what adolescents were doing online.

Wavne Rikkers: What we found was that really strong links between high levels of psychological distress and attempting suicide, so we found as many as 10,000 kids had attempted suicide in the previous year and were suffering from online problematic behaviour.

Ellen Leabeater: The big question now is the role the internet plays. Are adolescents already suffering from a mental illness turning to the internet as a copying mechanism, or is internet over-use contributing to adolescents’ poor mental health?

Wavne Rikkers: Well, one thing I need to make pretty clear is that because the survey was a snapshot in time, we don’t actually know whether going online causes the psychological distress or vice-versa. It’s quite possible the kids were feeling distressed first, but we don’t actually know that. Like I said, it’s chicken and egg, which one came first? But that’s a worrying link.

Ellen Leabeater: Lawrence says he has done longer research looking at this very question. He has found that it is the internet that causes the harm, rather than the teenagers having a pre-existing mental health problem.

Lawrence Lam: The study and I, we actually conducted an amount – a cohort of depression-free young people, we actually screened them with a very good and sensitive sort of instrument. Then we followed them up for a long period of time, around about a year, and then we re-monitored their internet use.

For those young people that actually exhibited high degrees of signs and symptoms of internet addiction, nine months later, when we reassessed them, they actually have some depressive symptoms showing. For those who – the risks for those who were actually getting onto the internet too long, too much, is about two-and-a-half times more likely they will depression symptoms, nine months later.

Ellen Leabeater: It’s certainly worrying that internet use potentially increases your risk of depression, especially because we rely so heavily on it in our daily lives.

Wavne Rikkers: Yeah, it’s very interesting. Because what we’ve discovered is that if mental health problems start in childhood, they quite likely extend into adulthood, it’s quite a common occurrence. So because we’re finding these links between mental health issues and problematic online behaviour – and by that I mean behaviour that has a negative impact on their day to day lives – I think it’s really important to get to the bottom of how the two things relate to each other.

On the plus side, we also found that about a third of kids go online to look up information about how to help with mental health problems, so maybe we can turn it on its head. If the internet is here to stay, maybe we can find ways to make it a more positive part of life.

Ellen Leabeater: Parents also play a role in all of this, as role models for their kids. But Lawrence’s research has found parents are often just as bad as the kids.

Lawrence Lam: What we have been observing, particularly in the Asian area, a lot of those parents are not communicating directly with the children but actually communicate through technology with the children. In fact, in some cases I actually observed that some of my friends, when you have parents and child even sitting in the sitting room, they don’t talk to each other but they actually WhatsApp each other, and they’re using technologies to communicate. But you know, the quality of communication is very poor in that sense.

Ellen Leabeater: WhatsApp being a popular messaging app. Lawrence says that if your parents have problematic internet use, your chance of also developing the habit is higher.

Lawrence Lam: My latest sort of study in fact indicates that while we’re looking at parents and children as a unit, very often those problems actually are really embedded in the family. For those young children or young teenagers who actually have an internet problem, it’s very likely some of the parents are also having the problem.

Ellen Leabeater: Lawrence’s advice to parents is very simple; take the time to hang out with your kids without the screens.

Lawrence Lam: First of all, we don’t want parents to be panicking, so there’s no need to panic. If you really identify that your young children are really getting onto the internet too much, I will say probably it would be good to try and develop some sort of communal time, coming together time. Try to organise something, okay, so we just put down our mobile phone, I’m not going to touch my mobile phone today or for half a day, let’s do something else.

Ellen Leabeater: And hey, it’s the internet, so of course there is a song about that.

Ellen Leabeater: If this story has raised any issues with you, please call Lifeline on 13 11 14 or the Kids Helpline on 1800 55 1800.

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Ellen Leabeater: We all know advertisers and marketers will try every trick in the book to get you to spend, spend, spend. But has the buck run out when it comes to marketing breastmilk substitutes? A new report has found the relaxed regulation in many parts of the world is leaving women vulnerable to unfair and biased information about breastfeeding.

The report by the World Health Organisation, UNICEF and the International Baby Food Action Network revealed that Australia is among one of the countries that has no legal measures in place to counter inappropriate advertisements. The World Health Organisation does have an International Code of Marketing of Breastmilk Substitutes, so why aren’t countries adopting it as law?

Ninah Kopel spoke to Dr Larry Grummer-Strawn, Technical Officer with the World Health Organisation’s Department of Nutrition for Health and Development.

Larry Grummer-Strawn: This is a very critical issue for the health of mothers and babies and we need to have an environment that is supportive of that. These laws in terms of protecting women and families from inappropriate information coming just for the purposes of marketing a product really need to stop and we need to have stronger legislation in order to protect that.

Ninah Kopel: The report that’s just come out has basically looked at all the laws and regulations that are in place in relation to alternatives to breastmilk around the world. So what regulations are in place?

Larry Grummer-Strawn: There’s quite a variety across countries. There are some countries that have fully implemented WHO’s recommendations on how to regulate the marketing of these products. A wide variety issues that are covered by those, including how labels for breastmilk substitutes should be, the kind of information that would be on those labels and the kind of information that ought to be available to mothers in the information and educational materials that physicians would put out.

It also deals with the relationships between companies and healthcare providers to make sure that they’re not biased in the kind of information that they give mothers. It talks about the advertising that they would do in the general public, the relationships they would have with mothers.

Ninah Kopel: Why is so much work being done by the World Health Organisation and other organisations to ensure that people are relying on breastmilk?

Larry Grummer-Strawn: We have ample evidence, thousands of research studies that have documented the importance of breastfeeding for a baby’s health, for the mother’s health, for the economics of the family, for society as a whole. We know that breastfeeding is just so incredibly important for both health and economics. So we want to make sure that we have an environment that is conducive to letting mothers make the best decisions for their own health and for their baby’s health. We know that the marketing of breastmilk substitutes often gets in the way of being able to make good healthy decisions, because people are bombarded with contrary information that is often non science-based.

Ninah Kopel: How has this managed to take place, how have companies effectively sold something that so many professionals are saying is completely unnecessary?

Larry Grummer-Strawn: Well, marketing is quite effective. So if you, over a number of many years, put out a message that your product is better. You work with healthcare providers and kind of – bribe might be a strong word, although there certainly are examples of bribery – but creating close relationships with healthcare providers so that they start to feel that, well, maybe it’s not so important, maybe breastmilk substitutes do almost as good or as good. So whenever there are any kind of difficulties with breastfeeding, rather than providing the help that a mother needs to get through those difficulties, it’s just much easier to say, why don’t you just buy this can of formula? It’s kind of an easy solution to fall back to.

As a result, what we’ve done is we’ve actually shaped our society to make it difficult to breastfeed. We certainly don’t want to put women in a position where they feel like they have to do something that is so hard for them. But we’ve created it where our jobs make it impossible to breastfeed, women are expected to go back to work much too earlier, there are not accommodations for them to breastfeed when they do back to work. We have this problem with the marketing, we find that healthcare providers themselves don’t even have the education on how to help women with problems that they have with breastfeeding.

Ninah Kopel: In terms of the economics, is that just that families will save money by not buying formula off the shelf?

Larry Grummer-Strawn: No, that’s only one aspect of it. Obviously there are also savings in terms of the healthcare costs, of taking care of sick children, of sick mothers. But also we see economic impacts because of the intellectual property – property is a bad word – but we know that babies who are breastfed do have higher IQs and have higher earning potential later in life. There are studies that have followed children over a number of years and show that those that were breastfed actually get better paying jobs later in life and are more productive.

So those can be turned into economic value through economic modelling of what that would actually be worth to the globe. There was a study published in The Lancet at the beginning of this year that actually documented the world economy could save $300 billion per year if we were to get breastfeeding rates up to recommended levels.

Ninah Kopel: So on the other hand, how much money is in the breastfeeding alternative industry?

Larry Grummer-Strawn: It’s a huge industry. The last estimate in 2014 was that the industry itself was worth $44 billion and that’s projected to grow to $70 billion by 2019. So it’s not only a huge industry, it’s also a very rapidly growing industry, particularly in the lower income parts of the world. Breastfeeding rates have been quite high throughout much of the low income countries but are starting to fall because of this marketing of breastmilk substitutes.

Ninah Kopel: Let’s talk about some of those laws. Are there any countries that have gotten it right in terms of protecting women from particularly unhealthy or overwhelming advertisements from breastmilk substitute companies?

Larry Grummer-Strawn: There are. In this report, we actually kind of categorise each country as to how strong their legislation is. We have a category of essentially comprehensive legislation that covers all of the areas that are recommended by WHO. There are 39 countries out of the 194 member states of the World Health Assembly of essentially all countries around the world, 39 of those countries have what we consider to be comprehensive legislation. Those are countries in south-east Africa, southern Asia and some countries of Latin America. High income countries really have not done nearly as well in putting in place that strong legislation.

Ninah Kopel: That surprises me. You’d think that the countries with more resources available would be doing more to counteract the advertisements that are coming through.

Larry Grummer-Strawn: One would certainly have hoped, but that is not the reality. I think that in those higher income countries, they tend to have much closer relationships with industry and so they are more susceptible to the influence of industry convincing them that, well, we don’t need to have such strong protections here. We also know that the rates of breastfeeding are much lower in those high income countries, so there’s not as strong a societal push for strong legislation. There’s more of an acceptance of, well, we’ll just let women do what they want to do and not try to get in their way, when they actually don’t realise that the advertising itself is getting in the way.

Ninah Kopel: What kind of impact could an effective international – or at least a more global approach to this, what impact could that have?

Larry Grummer-Strawn: I think it would really have a huge cultural shift. It wouldn’t be instantaneous, right now people already have a desire for capturing these products, so they – we probably wouldn’t see a change instantaneously. But over time, as the messages about the importance of breastfeeding continue to get out there and they’re not combatted with a message that counters that, we’d see the culture shifting in terms of more and more acceptance of breastfeeding and the importance of breastfeeding.

I think we’d see a lot of the support mechanisms, both in healthcare, employment, the accommodations in the general public would shift over time and be much more supportive of breastfeeding. So it’s not that there would be a direct impact on breastfeeding immediately going up, but it would create kind of an enabling environment, that the supports that are needed for breastfeeding could come into place.

Ellen Leabeater: Ninah Kopel speaking to Dr Larry Grummer-Strawn from the World Health Organisation.