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Designing for the best death possible: An interview with Matiu Bush

Gerry Gaffney Design thinking, Healthcare Leave a Comment

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Matiu Bush talks about designing for the end of life.

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Transcript

Gerry Gaffney

This is Gerry Gaffney with the User Experience podcast.

My guest today has an extremely varied past. He studied fashion design, he worked for four and a half years with Mother Theresa both in India and in Tijuana; he’s been an emergency oncology and intensive care nurse and a sexual health nurse practitioner. He’s currently Design Integration Lead at Bolton Clarke and a board member at Better Care Victoria in Australia. I came across him when he presented at the UX Design group meet-up in Melbourne recently and his topic had an intriguing title – “Designing the Best Death Possible.” Matiu Bush, welcome to the User Experience podcast.

Matiu Bush

It’s great to be here and great to talk all things design and healthcare.

Gerry

How did you get so interested in death?

Matiu

There was a real need for a new approach to death and dying in aged care, especially in the aged-care facilities of Bolton Clarke and the executive and the CEO and the board were very, very passionate about delivering the best death possible and how it could be designed as part of a system overhaul and so I took that and I knew that I had to use a different methodology; that I couldn’t just do the normal go and speak to nurses, go and speak to palliative care consultants, get their ideas. I knew we had to transform it. And the methodology that would work best in this type of transformational work was human centred design. When I’m designing for a good death, it’s a work of empathy and it is truly where empathy comes to its fullest expression when we’re talking to people about the death experience of their loved ones and gathering their insights and how to respect their insights that they’re giving because they’re incredibly valuable and following that through.

So I knew human centred design would be the type of methodology that would give the, that would really honour the history and lives of those that have, people have gone before us. So that’s how I got interested in putting design in the death space.

Gerry

And I think it’s true to say that you partnered with RMIT which is the Royal Melbourne Institute of Technology for some of your research at least, is that right?

Matiu

True. I knew that by getting diverse minds in the room that I would get a better overall system. So, for example, we have 26 aged care facilities at Bolton Clarke and during the year many, many people die in those facilities. It’s a fact of life in aged care that many people enter aged care facilities and will experience end of life within those facilities within 12 months, within 18 months. So when we look at the volume and we have over 2,000 residents in our aged-care facilities, we knew that we had to have a whole system approach, that actually we had to transform the entire organisation so that we were very, very focused on delivering over and over again a system that enables people to die the way that they want but also respects their family members et cetera.

So I knew that RMIT had a very, very strong design focus and that service design was beginning more prominent it was sort of born out of human centred design and started to look at systems and the way you could influence all the systems. So we took the aged care designing towards a good death to over 60 design students and ran workshops with them. And we have got incredible insights in how to deliver something that is reproducible so that time and time again all the elements of a good death are adhered to and are promoted and are respected.

So that was the importance of partnering with the university and with brand new thinking in this area.

Gerry

It’s also true to say of course that you know that lets people think that you just went out and you know sort of ran workshops with a bunch of students that you also did extensive research and interviewing with a whole range of people, including families of people in those aged-care centres and residents themselves.

Matiu

Absolutely. So as a phenomenologist we followed and I followed, my team did, we followed all of the phenomena we heard about. So, for example, when someone told us a story around the death an animal, so their dog died who was 16 years old and the vet had sent them a card and also some flowers. And their loved one, their mother had also died in an aged-care facility and they had received nothing from the aged care facility. So when I followed that phenomenon, I called up the vet in question and asked her about…

Gerry

We should just say here for our American listeners that we are talking about veterinarians rather than veterans.

Matiu

Right, different species. So when I followed that phenomenon through, I realised that this veterinarian had a really robust bereavement process and they had, the vet had never thought of themselves as having that but they had a very robust systematised way of managing bereavement. So that’s when our family interviews, our interviews with residents, our interviews with everybody, because no matter who touched this work, they had a story to tell about their loved one. And during the process of talking to many, many people – so we spoke to funeral directors, we spoke to, later on we spoke to nurses and doctors, we spoke to anyone that had had any older person die and sifted through their experience to find the insights that would lead us to designing a better system.

Gerry

You showed an amazing journey map. I’d have to say it’s the best journey map that I’ve seen and journey maps are very popular of course but this one was on a big long roll of brown paper and it was rather tatty and there were bits of it all falling off and it didn’t have any swim lanes and the like but it described the journey from when a person and their family engage with an assisted living or aged-care institution right through to that person’s demise and beyond.

I mean that in itself is fascinating but one thing that really interested me was that you used specifically and very deliberately avoided any sort of UX jargon; you did sort of use the word “persona” I think once but you had it in floating quotation marks.

Is this very deliberate on your part to avoid the jargon?

Matiu

Absolutely. I think I’m a clinician and a human centred designer so I’m a hybrid professional and the end game is not the artefact and for those of us that have been in the re-designing space and the design thinking space we often meet people whose end result is their finish line is the workshop, their finish line is producing a document or a deck or a process map.

For me that artefact purely is part of the process of delivering change at the frontline. Sorry…

Gerry

That’s okay.

Matiu

My alarm went off…so delivering change at the frontline, so the artefact is peripheral. But this artefact, which is a 5 metre long map, it’s messy, it’s falling apart, it’s travelled over 12,000 kilometres, we’ve taken it to four different states in Australia and I’ve rolled it out in funeral parlours, I’ve rolled it out in offices. I rolled it out in a car park where a whole lot of people who were in a retirement village just gathered around and we casually talked. So it’s a pretty robust tool. But it does, why I keep using it, even though it looks rather decrepit now, is that I want to honour the stories that have been told through it. And some of those stories are receiving your loved one’s possessions in black garbage bags, for example. And how we can design that out of our residential aged-care experience. There’s no need to use black garbage bags to put the belongings of your father, your mother. That just doesn’t need to happen.

Another important thing that artefact does is deliver the complexity. And this is important for human centred design as you enter into healthcare. Healthcare is a marketplace of complexity and I wanted to represent to the design community how complex this stuff is. It’s manageable when we break it down but it is truly complex and we should have reverence for the people who work there. Sometimes they don’t embrace a lot of our ideas but are defending their place of righteousness because they see how complex their world is and then often look at human centred designers and say ‘well what can you offer me?’

So I also wanted to represent the complexity of what it’s like just to pull off one good death. And another aspect of the map is after the person dies it continues and it continues right to the point where we don’t send letters to people who have died because we’ve cleaned up our data bases and that type of experience I wouldn’t have put that on an end of life improvement process unless I’d heard the story about disheartening it was to receive a letter from the institution where your loved one has just died, your mother has just died and they’ve sent a letter asking for money or asking for their annual meeting to see how your mother’s travelling. That really insults the family. It’s not an act of empathy. But purely it’s a system that doesn’t know how to clean out the data of those who have died to stop those sorts of letters going through.

So that’s sort of the complexity of that map and why that map is so important.

Gerry

And I guess that reflects back on your comment on engaging the entire organisation and not just those directly involved in the patient care. You said some very interesting comments about signalling that a person had died to staff members who weren’t just the primary carers but who might be gardeners and kitchen staff and finance staff and so on. Can you talk a little bit about that?

Matiu

Yeah that’s the beautiful act of collecting stories and Malcolm Gladwell often says that everyone has an interesting story and if they are boring trust that they will lead you to somewhere interesting. And often during this work of going into an aged-care facility and uncovering how people feel, we found that gardeners and maintenance people were often not told if someone had died and how that hurt them and how that made them sad because they may have been the person that walked into an aged-care person’s home, into their room and showed them the flowers. They were the ones that talked to them when they changed the light globes. They had a relationship that mattered. It meant something to them; it meant something for the older person. And when they weren’t told they had died, when they walk into the room and expect to see them and then see somebody else, they feel really undervalued, they feel that their relationship wasn’t valued. And so one of the design principles that came out of this or design recommendations was that we have a systemic way of alerting all staff that somebody has died; so that is cleaners, that is kitchen staff, that is maintenance, that is nursing. And that’s often one, nurses have that communication built in because they have handover, they exchange information between each shifts but the nurses never thought about the gardeners, the cleaners and the maintenance people and why it’s so important to expand the scope of what’s possible in producing a good death to everybody who works in that facility.

Gerry

What sort of signal did you experiment with to pass that information of the death on?

Matiu

So a range of things of really simple visual management. So creating a laser cut shape that goes on the door that symbolises that somebody has died or is dying or that the body is still in the room so that that alerted staff.

Other ways we found was that residential aged care facilities will put a photograph of the person and a candle at the front desk so that new staff coming in will be able to see that and that also is a way of letting other residents know because often a neglected facet of bereavement is staff, volunteers but also fellow residents so there’s a way to use visual management to alert people that something has happened.

Also there is a simple SMS and for those that are off duty, an email. But there are connection points where staff usually gather, in tearooms etc. and there’s ways to communicate. One of the simple ways is developing a storyboard of the person’s life and using that as a way of communicating when they’ve passed away.

Gerry

I was amused about a comment you made about beds in Catholic hospitals specifically designed to hide bodies.

Matiu

Yes that was amazing. The drive for hygiene and to make everything invisible is such a ridiculous charade in hospitals and in aged-care facilities. So I discovered a bed that an engineer had designed that it has a hydraulic lift inside it so you can place a body in there and it drops down and you can slide a fake mattress over it and it just looks like you’re changing the bed but you’re actually moving the body around the facility. So that is design intent, that is an engineer putting a lot of effort into creating something that is a ridiculous charade and it actually betrays the humanity of the entire situation. So allowing residents to grieve, allowing staff to grieve, allowing staff to go to funerals, writing that into policy, raising that at the corporate level so the head office has a memorial day or a remembrance day for all of those people that have passed, using photography to create portraits of those that have passed are all ways we can constantly honour and bring humanity back to a system that often is bereft of compassion, empathy and the lives and deaths we want to live. We don’t see that in the lived experience of older people in aged-care facilities at the moment.

So I think it’s a comfort level but it’s also being so brave to make that obvious. So if someone’s died letting everyone know and when we find residential aged-care facilities that do that well it’s a strength-based approach where we document how they do that and just purely as tribal designers they have designed a way of doing that through alerting residents, doing a guard of honour as the body leaves the aged-care facility through the front door. So there are example of aged-care facilities doing it really well. Our job is to package that up as service designers and say this is the standard for 26 nursing homes or aged-care facilities throughout our organisation so that no matter where you go there is no disadvantage because we deliver the best experience possible in all our facilities.

Gerry

What constitutes a good death and to what extent might that be at odds with the commercial realities of your employer?

Matiu

A good death means you’ve made some decisions that the organisation have what I call ‘up streamed’ things as much as possible. So, for example, if you were admitted to an aged care facility someone’s discussed how you would like to die, your preference of where you would like to die, whether that is at hospital, whether that is at home. And I met some nurses who were working with a Vietnamese family and the mother wanted to die at home so they were able to get a transport home, they put palliative care at home and the mother died peacefully at home.

So for yourself it would be around your choices, being heard and then creating a plan around those choices so it has a tangible reality. It also means without suffering and many people really don’t care where they die they just don’t want to be in pain. So if we can reassure people that they won’t be in pain, they’re happy to die in the aged-care facility.

I think giving people plenty of time and notice and really strong communication with families that this is potentially on the horizon in the next three months and we’re thinking about using machine learning and artificial intelligence to help pull a whole lot of data, to help predict those that may end up in end of life in the next three to twelve months just purely based on all of the health data we have about our clients and our residents.

So there’s ways to communicate to family. I think helping people get to a stage where they are accepting and also where they are able to give back in the last years or months of their life and create tremendous meaning around that. The execution of their cultural, spiritual, religious beliefs is incredibly important. So they are all the ingredients of a good death and if it’s documented in something called an Advance Care Plan or End of Life Directive that means there’s no ambiguity because the last thing anyone wants is a 93 year old, your 93 year old dad to end up in ICU ventilated because no-one knew about his wishes to die at the nursing home in peace without medical treatment. So that’s what a good death is. And we do that in healthcare. We just don’t do it every single time. So that’s sort of the gap of where we want to get to that we design a system that enables that every single time somebody dies we’ve delivered the best death possible.

Now the commercial realities are interesting. I know that the issue, there is bed pressure but it’s seen from, if I’d like to change a lens that in hospital there are older people waiting for an aged-care facility and in rehab units there are people waiting for aged-care facilities. So the pressure comes from externally to move people out of hospital into an aged care facility which is a better place for them. So that’s where that pressure comes from. When they interviewed staff, and we talked to staff around the issue around bed pressure and as soon as someone’s dying trying to fill the bed. The managers themselves weren’t that interested in turning over the bed within 24 hours; they wanted to respect the space. The care workers weren’t too concerned and they just never wanted to be in the situation where they walked into a room and there was a new person and they weren’t told that the other resident had died.

So really communication can solve that. I think people who work in aged care and healthcare realised the pressure of access to these facilities but it’s the communication that upsets them when they’re not told and I think there is a way to move the conversation around, how do you leave a room? As long as everyone’s informed and everyone’s comfortable we’re ready to receive the next person who deserves the care we’ve got to give.

Gerry

Interesting you talk about pressure coming from hospitals and the like. Atul Gawande in “Being Mortal” wrote, and I’m paraphrasing that the medical profession was exactly the wrong group of people to be caring for those approaching the end of life. Do you agree with his statement and why?

Matiu

I think there is tremendous capacity within families and there’s tremendous capacity within non-medical professionals and volunteers and in our care staff to work with death and dying and be comfortable with that. There’s a new workforce within death and dying called ‘death doula’ and like you have a birth doula who’s someone who’s a support person, an advocate who’s not medical helps you to give birth, the same thing for death. And I think they are a really interesting group of people. I think what happens is it’s very difficult for clinicians to change gears so that they’re on a particular mode and nurses fall into this category, I’m a nurse, I can say I fall into that category; so for example, a really tangible example that we heard time and time again was that when people were dying and only had three days to live, they were on a thickened fluid because of a choking issue, a swallowing issue. But all they wanted was either a whiskey, a sip of a whiskey or a sip of a cup of tea. But no-one would allow them because the medical treatment had decided or the medical opinion was that they had a swallowing issue therefore they needed thickened fluids. But no-one stepped back and said ‘hang on, they’ve only got three days to live; what does it matter?’ So it’s changing that lens, changing that gear which allows a lot more possibility in someone’s end of life which may not have anything to do with what would be considered normal medical practice.

So I’ve worked with some amazing palliative care physicians, they’re incredible. I’ve worked with other doctors in cancer care who struggled and weren’t so comfortable and were also all about saving lives so they struggled to transition into not doing any active treatment. So yes there’s a combination of evolving doctors to be better at it, evolving nurses and allied health to be far better at it as well as emerging groups like volunteers and death doulas and also supporting families to be better at managing death which absolutely helps with their bereavement and grief process

Gerry

Tell us about the guy on the motorbike.

Matiu

Sure so this was a patient I had who was dying and he weighed about 40 kilos and it was in an HIV ward and he was an engineer. He also was incredibly scary. So he had a, his face was tattooed, he was a Goth, so he dressed in an enormous trench coat and enormous Doc Marten boots with this Mohawk and this face full of tattoos.

So most nurses and care workers were frightened of him but he was only 40 kilos and I was about twice that so I was quite comfortable to work with him and also we had a really good rapport. He loved vespers and he was an engineer, a tinkerer and so I had a Vespa that was tragically breaking down on a regular basis. So I brought it into the palliative care unit for him to work on to tamper with to fill his days. So if you just put yourself in the patient perspective, often they’re just looking at that boring ceiling and TV and there’s such a poverty of activity, even during palliative care and palliative care doesn’t happen acutely. It can take months for people to pass away. So I brought in my Vespa and he fixed it and I brought in some tools and he was more active than he has ever been in his entire time in the palliative care unit. So much active that he ended up riding it through the streets of St Kilda in Melbourne without a helmet full of morphine and a whole range of medications to help him with his pain and other issues.

But he really enjoyed his last days and that really sparked in me how permissible palliative care should be. And that the rules around whether I as a nurse can bring in my bike and let this patient work on it, that there should be a relaxing of rules, that we should be giving people opportunities to thrive, to learn, to grow even in their very last days of life; that is absolutely our responsibility. And often when people ask me about healthcare and what’s wrong with healthcare and they look at the enormity of what’s wrong with healthcare for me, at its core it’s a lack of creativity. And if we are more creative in our solutions of how to respond to what we see, whether that’s palliative care or maternity or outpatient department or cancer or renal, if we look at it through a creative lens then there is tremendous opportunity to do a lot more with the minimal resources we have.

Gerry

Kind of the opposite of a phrase that really struck with me that you used during your presentation; you spoke about “sacrificing user experience at the altar of safety and convenience.”

Tell me Matiu, a lot of people who work with the dying will tell you how rewarding it is. Does that ring true for you?

Matiu

It is beautiful work. It is also hard work. It is mundane work. There is a routine around it and it is quite predictable at times as well. But there will be particular deaths that stay with you and there will be particular patients that stay with you and that’s why it’s such a privileged space to be in too. To be able to bear witness, to walk families through it and be a guide for them and also the wonderful colleagues that you work with.

So it’s incredibly rewarding. What for me is the most exciting thing is moving just from the individual but if we were able to design at Bolton Clarke a service offering that means that anyone who enters end of life care in our 26 aged care facilities gets every chance to die the best death possible and families are supported, staff are supported, fellow residents are supported and they never get a letter sent to them after they’ve died. That means we can create something amazing for over 1000 people a year and what that does is invest in the future of those families. When people die a good death and have a very good experience, the family experience less anxiety and depression six months afterwards. And so for me I’m really invested in creating memories for family members so when they look back upon their mother, their father, their grandmother, they have a very, very good experience. It brings back really strong memories. One of the interesting things the design students came up with was curating the personhood, the history, the stories, the photos, creating memory boards and biographies so that you could give a family a heirloom box filled with all of these products, these tangible products of the life story of their loved one. And if we, for example, if your mother died and then you come to one of your facilities and we give you a box that’s got the photos, it’s got a life story that’s been recorded, it’s got her favourite music because we’ve been developing a playlist for you; those sorts of things mean that you experience less anxiety, less depression, less bereavement than you would if it was a difficult situation.

Now death can be difficult but there’s so much that the system can do to make it bearable for you.

Gerry

You also spoke about, I know we’re running short on time at this point, but you also spoke about and you mentioned earlier on moving upstream, you spoke about the ability to avoid the family conflict that unfortunately so often happens when the people are dying and their next of kin disagree as to the arrangements.

Matiu

Yeah, interesting space. I rolled out that map, the process map of one good death in a funeral parlour and the general manager of that funeral parlour came out and we walked through it and he said Matiu I spend all my time in family conflict, helping families come together, managing families that are fractured and broken and he had an example of trying to get the son in the morning so the son wouldn’t see the other siblings and the mother in the afternoon and trying to schedule that. So he pleaded with me to work on family conflict right from the very beginning and so we honoured that insight, that phenomenon that he told us. And so in our design recommendation it is working on family conflict and family cohesion. Now there is an absolute role for technology but technology just fits in almost in the background. So we are talking about voice recording of end of life conversations, compressing them to mp3 files and pushing them out for a family portal so that the whole family can hear the end of life conversations so that everyone can start to align to the wishes of that person. So there is an absolute role for technology but technology just takes the background. We will use whatever possible, if we need to use an app, if we need to use virtual reality, if we need to use machine learning, artificial intelligence, we will use all of that but that’s all secondary to the humanity. And so in regards to family conflict, we will be using a lot of tech to resolve that, to help democratise tasks for example. So often what we’ve found is that one family member would be taking the majority of the load and not really know how to ask for help. But there’s a fantastic rostering and scheduling website called gather my crew that helps family members in crisis disperse the amount of tasks that have to be done equally amongst all of the family members and friends.

So we realise this role of technology to help family cohesion during this time. Often families just need extra help in managing the practicalities of dying and there are solutions to that which we will roll out when we’re ready to go live with our new model.

Gerry

Now for anyone listening or reading who thinks ‘wow, I’d really like to do something meaningful in my career instead of doing shallow, mercenary work with start-ups or banks’ do you have any advice?

Matiu

Absolutely. This is a question I’ve been asked quite a bit. So what I would advise and what I do first of all is any role that I see advertise that I think a service designer or a human centred designer or an industrial designer would be good at in healthcare I email it to all my networks and say ‘start to reply’. What I do on the other side is talk to the people who are writing job descriptions and say ‘hey you know what? You need a service designer, especially in the user experience, patient experience space’. So have a look at roles within healthcare and don’t be afraid to put in your resume, to walk in and pitch yourself that you’ve got something different to offer. You may know nothing about cancer, you may know nothing about aged care, we can teach you all of that. But we know nothing about the design process. We know nothing about rapid prototyping, of empathy mapping, of personas, we’re naive to that in health. So service designers have so much to offer health and I can’t wait for then there are more and more jobs for service designers. I’m lucky enough at Bolton Clarke. We have a design integration lead and one of our executives is responsible for the design integration in the organisation. So they’ve embraced human centred design and I’m not alone in that sense that more and more the health department and other hospitals are appointing chief experience officers. So it’s slowly happening within the healthcare system in Australia; the recognition that human centred design, that designers have something incredible to offer healthcare.

Gerry

And is that the same situation worldwide now? You mentioned it taking root in Australia.

Matiu

It’s certainly more established in the UK and US but slow to gather here although it is parallel with the amount of start-up and ux activity within the broader sector here in Australia. So we’re seeing sort of a synergy of development in commercial land around the importance of ux, the amount of tech that’s coming into health that is bringing ux to it and ux sensitivity to it and now that’s spilling over to the clinical world so that we’re starting to talk about journey mapping, empathy mapping, persona development within healthcare, within renal services, within heart failure services. So we’re seeing a lot of pollination and certainly it’s still in its infancy and has a long way to go in Australia. Definitely UK and US are leading in that regards.

Gerry

A transcript of this episode is available at uxpod.com. Matiu Bush thanks so much for joining me today on the User Experience podcast.

Matiu

Pleasure. Thank you.

Gerry GaffneyDesigning for the best death possible: An interview with Matiu Bush

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