You can listen to Episode S4E5 right here!
Lori Pinkerton-Rolet
Hello, and welcome to the Third Age Design podcast sharing essential information on senior environments. I’m Lori Pinkerton-Rolet, and this month we’re discussing a very sensitive subject, end-of-life design. Our guest is Professor Emeritus Paul Eshelman from Cornell University in the United States, and I hope you’ll find our conversation meaningful and insightful. And our innovation spotlight shines on some elegant, respectful and darn right attractive alternatives to tabards, or adult bibs for older residents who require clothing protectors–and we’re gonna get to that a little bit later in the podcast. Now, I’m going to ask you to indulge me for just a moment. Usually we share a sentence or two of a quote from a well known person at this point. And today I’m going to share perhaps the loveliest thing that I’ve ever read. And it’s just something I came across on Facebook. Actually, it was posted by Laron G. Smith, a regression hypnotherapist. It’s very long, so I suggest you look for it online. But I’m gonna give you a snapshot. It refers to a Native American legend. When faced with a forest fire, a little hummingbird flies back and forth to help put the fire out with the water that it can carry in its tiny beak. Now Smith says that Native American grandmothers would tell the story to their grandchildren and say, Do you want to attract miracles into your life? If so, do your part and ends with you have no responsibility to save the world, or to find the solutions to all the problems, but to attend to your particular personal corner of the universe. As each person does that the world saves itself. Isn’t that beautiful? My own corner is this podcast. And if you’re listening the importance of creating supportive fulfilling later life environments likely has resonance for you also, join our listeners from 63 countries by going to our website at Third Age Dot Design and hit the ‘Join Us’ button and you’ll automatically receive this quarter’s ‘A TAD Extra’ exclusive information for our community members, you would be most welcome. The Third Age Design podcast is supported by Wissner-Bosserhoff. Elevate nursing care with intelligent beds from Wissner-Bosserhoff, blending modern day smart care technology with comfort, empowering caregivers worldwide. Discover more at www.wi-bo.com. That’s www. wi-bo.com. Okay, let’s get started. You know, there can be no greater honour than designing the space in which someone will inhabit in their final days or hours, environments in which their families are also going to remember this time with their loved one. And as you’ll see, the question arises how much should be up to us as designers? My guest today is Professor Paul Eshelman. After working professionally as Senior Designer for Amtrak in the US and Research Associate for Herman Miller Research Corporation, he joined the Department of Design and Environmental Analysis at Cornell University in Ithaca, New York, USA in 1978, where he taught interior and furniture design, and where his research focused on among other areas, people with Alzheimer’s disease. He was named a fellow of the international organisation, The Interior Design Educators Council, and from 1990 to 1994 he served as editor of the only peer review journal in the interiors field, and he continues to serve as a reviewer. It’s an honour to have him as our guest on today’s Third Age Design podcast. Welcome Professor Eshelman.
Prof. Paul Eshelman
Thank you.
Lori Pinkerton-Rolet
You were engaged in a Cornell University report titled ‘Designing End-of-Life Care Settings to Enhance Quality of L’ife, which was, as I understand it, specifically designed for sharing with designers but also other stakeholders in this area. It’s obviously a very, very niche topic. Um, so can you explain how this particular report came about?
Prof. Paul Eshelman
I was thinking about this question and there’s a convergence in my mind of probably four factors one had to do with my approach to teaching another has to do with the grant a request for proposals. The third has to do with personal motivation, and fourth has to do with interaction with a new colleague in my department. The first, involving my approach to teaching, I’ve have a long standing approach of having students in design studios that I work with having students focus on design for special populations. And what I like about this approach, or ask of students is it challenges them to temporarily suspend their intuition until they’ve appropriately informed it. And I think that’s good for them for learning about creativity and what informs creativity and what makes creativity as socially relevant. Now that the second Well, I guess that to finish that thought, over a period of years, I’ve had students working on a fairly broad range of working with a fairly broad range of special populations, from preschool children to college students with mobility impairment, physical disabilities, to elderly with Alzheimer’s. And now to the second point of grant call for proposals. A colleague at Cornell, received the National Institute of Health grant, the colleagues name is Carl, Dr. Carl Tolimer. And as part of the grant that he received, he was reaching out to other colleagues to participate in work, addressing the issue of pain at end-of-life, how to mitigate pain. On a personal level, my daughter in 2007, was diagnosed with brain cancer, and astrocytoma, which were we felt blessed at the time that she was able to access incredible treatment, that the inevitable was that she would progress to that the cancer we would progress and we eventually would be dealing with an end-of-life situation. And that is, in fact, what happened. (I’m so sorry) Well, thank you. Yeah, it was painful to say the least. And humbling to me, you want to do anything you can. And the the only thing I could offer was just to ask questions and try to offer some comfort in relation to the role the physical environment can play. The fourth factor was speaking with a new colleague in my department, Dr. Ron Azadi. And then we can talking about this grant request for proposals and came together on a collaboration. We submitted a proposal the received funding and that set us on a path to do extensive literature review and interviews related to the role environment can play in in end of life care. So all those factors brought me to to this new special population and to work with it and see what we could learn about trying to make the environment more supportive of people at that stage.
Lori Pinkerton-Rolet
And so you have quite a unique perspective for for all of those, all of those reasons. Unfortunately, the report itself breaks down 14 different areas of consideration and we will put a link to it on the podcast page for this episode. So people can go into greater detail themselves into those areas, but it includes furniture, airflow, lighting, housekeeping, but I’d like to go into a little bit further depth today on just a few areas of privacy as we say in the States or privacy as they say here in the UK. I’m unwanted stimulation, which ties into that, in some ways, design positive restoration and what you mean by that connection to the outdoors. So let’s start with the latter, if we may biophilic design is a big buzzword, and has been for for several years now. Why in end-of-life care is the connection to the outdoors so very, very important in your opinion? And, based on the research, of course that you’ve done. I
Prof. Paul Eshelman
hope I don’t come across as shortchanging you with an answer here. I just, I would say there is an extensive body of literature on the restorative potential of nature relative to physical health and emotional well being. And I think that is quite compelling and convincing that that body of literature, all I can say is it is well established. I’m not an expert in that area. I have a colleague who’s done extensive work in relation to the the role access to nature plays in development of children and youth and her work is very convincing and compelling as well. I just I would add that this is a bit of a sidetrack but named Cicely Saunders is a renowned British physician started out as a nurse and became a physician. And she devoted her career and life to the issue of end-of-life care. And she’s credited with coining the word hospice, she created the first residential hospice facility St. Christopher’s hospice in 1967. Sidenham, London, I guess that’s a suburb of London. Her focus was on providing care that addresses physical, social, psychological and spiritual suffering at end-of-life. And I don’t I think it’s within the realm of logic to assert that access to nature, can play an enabling role or a helpful role relative to all four of those dimensions (Yes), end-of-life suffering. So a remarkable woman who played a very influential role in what is now an established offering.
Lori Pinkerton-Rolet
And a lot of a lot of this has to do with sort of window size. And occasionally, you can find beds directly facing a window. And generally that isn’t the setup of a room, usually, because of the necessary equipment electrics, everything the bed is on one wall, and the window wall is adjacent to it. And at any age, it can be difficult to be looking, you know, directly 90 degrees over one shoulder, presumably the size of the window becomes even more important if you’re looking at an overall facility and saying, where should I be placing my end of life care within this facility, if it’s not a hospice, if it’s a care setting that might just have an end-of-life suite, for example, choosing that window, the size of it, the angle from the bed, to the exterior must be of great importance.
Prof. Paul Eshelman
I have a roundabout response to what you’re asking Lori. When my daughter was receiving amazing medical treatment. She went to Cancer Centre in the US at MD Anderson, which is in Houston, Texas. And I was there with her undergoing treatment. I took the occasion at one point to go and talk with the director of the hospice unit within MD Anderson. And I’m sorry, I don’t it’s been so long ago. I don’t remember his name, but he was very helpful individual. One comment that he made that continues to stand out in my mind was he said that, on average, physicians know 200 days out when a person is approaching end of life and would benefit from hospice or palliative care. And yet, the reality is, most people don’t utilise hospice services often less than 20 days. And so that the implication there for the question that you’re asking is that 200 days out, most people would still be ambulatory, they would be able to move around the space and their experience of that space would be quite different than if they’re confined to bed. And whereas people in the last 20 days confined to a bed is a more likely reality. And so it’s that fact alone changes the way you think about some of the elements within us piece that would house a person with, with dementia, or I’m sorry with dealing with end-of-life care. Another kind of confounding factor is that avoiding bed sores and decumanus ulcers requires that the person be shifted on a regular, every couple of our bases and that shifting changes their point of view from if they are bed confined, it changes their point of view. So they the opportunity is to think not just in terms of one element of stimulation, but a multiple elements of of stimulation, and how they work together as options. And I think a my daughter in her end-up-life experience was in, in a bedroom she was, fortunately it’s able to remain at home. Or, to our left in bed was a large window. Straight ahead of her at the foot of bed was a table with large, well lighted photos of family to her right was a quilt hanging on the wall. The quilt and sunflowers and the seeds in the sunflowers were buttons. And granted, she was had different conditions and earn unique conditions because of brain cancer, she was experiencing a decline in cognitive ability. But I could observe her being quite at peace, laying staring at the quilt and staring at the buttons. And so those options, I think, presented her with a good variety that I felt good about.
Lori Pinkerton-Rolet
Let’s let’s let’s jump ahead to one of the other points then that you’re bringing up, which is the personalization of spaces and the importance of that within end of life settings. Did you when you were bringing in this quilt, in your your personal example? Did anybody have to to go through infection control issues or anything? Or is Is it because this is the personal space of a person who is who is going through treatment at the end of the life? Is that not something that you you have to get everything authorised that you’re bringing in? You’re just allowed? And should one be allowed to just bring personal items into that space?
Prof. Paul Eshelman
Well, this is a good question or yes, certainly a question that came to light during the COVID pandemic. What are the legal liabilities? What are the safety concerns? And I don’t have a coherent or concise answer to what you’re asking just a few thoughts in the states in the US hospice is a legally defined and legally regulated term. Hospice is a regulated service. And being regulated, it would be subject I can’t speak specifically to our the regulation played out during the pandemic in terms of isolation. But I think there were media stories that led led me to believe that there was a lot of isolation going on in healthcare contexts. How it’s interesting that one of the terms it’s often used with hospice care is palliative care. And palliative care, at least in the US is neither legally defined nor legally regulated. So palliative care opens up a broader spectrum of care options. It opens up a lot of windows of creativity in the provision of care for people have at end of life, and I think palliative care would put even though it’s not defined, I think implicitly it suggests that comfort care, and not anything curative or preventative would be what it should be taken into account
Lori Pinkerton-Rolet
Pre-eminent in the, in the treatment of the people is that…?
Prof. Paul Eshelman
I think and then going to the example you, you mentioned my my example that certainly was not in our mind to be concerned about infection or things that could be caused by family being around in fact, I feel very good and fortunate about the situation that she experienced that context for her end of life experience, it was in a in her home was a home, where she was on in a, in a bedroom on a main floor, near the living room, near a kitchen. There is extended family around food was constantly flowing into the the house, there was the conversation in the kitchen of reminiscing of joy of laughter that carried over into her room. It was a family that did a lot of singing. And so family would gather and sing and in the living room, and even on several occasions came into her bedroom and stood around and sang to her and, and her cats came in and lay the cats laid on her laid in bed with her her husband was an just an amazing individual, very caring, and he literally laid with her because she was in a double bed as opposed to a hospital bed. Or the last week of her life and comforted her at any moment that she became agitated and and it just it was such a beautiful…we called it Emicamp, or Emily was my daughter’s name and, and family was around or her son was playing sometimes he’d bring toys in and lay on her bed next to her. And so it was if I could hold that as a model for care for anyone, I’d say this is this would be the ideal, but it it’s so variable she was in physically, physically good condition and cognitively declining. Every situation every end of life situation is is unique and defined by the conditions of the person their their, this, their ability to receive stimuli is totally dependent on their, their physical, cognitive, state and the level of pain, the level of being able to control their lives. And so it’s I just I come around to I’m jumping ahead probably on you but it just the the metaphor that rattles in my mind is a stage setting. If and I know there are limits to the idea, because people’s ability to control a stage you have to have stage managers who would Yes, of course, bring things in move things away, but it’s like the end of life situation. My understanding is that it’s not a fixed date condition. It’s a continually evolving changing state. And as abilities decline as ability to control declines, his ability to send stimuli changes, being able to bring appropriate stimuli closer and make it so that it can be seen and make it so that it can be touched. And it’s if I think that would be a wonderful challenge for creative minds to think about what it is to support that kind of a process where positive stimulation is available and can be tapped into the, to the extent possible, in order to distract from the pain of the process.
Lori Pinkerton-Rolet
But the person involved and their family, if I’m hearing you correctly, it would be useful to allow them to have some control over that. So you were mentioning that there was there was a bedroom and it had it had the double bed that your son in law, you know, was able to to join your daughter in. However, there was also a a separate kitchen, there was also an a separate family rooms. So the ability to make noise to sing in a room or not sing in a room or for the family members to have discussions with the person not necessarily being present. Not Not that you’re going aside to talk about them, but you’re obviously going aside to talk about them in a way of what can we do to be more supportive. In other words, it’s useful to have spaces for the family outside of the patient bedroom, in order for some of those discussions and interactions to take place, including possibly children’s play toys, and a toy box or, you know, other types of stimulation also for the family members, because they may be there for quite an extended amount of time.
Prof. Paul Eshelman
Yes, and they’re processing as well, they’re going through their own processing of loss, and coming to grips with that. One thought is that the there is an apparent struggle with the the loss loss, loss of control, a loss of loss of ability to make choices. And, and that’s, I think that is certainly experienced by the person who is going through the end of life experience, but it’s also the context or frame. It defines that loss defines the experience for all the loved ones involved. And and it’s, again, pointing to opportunities for for rich, creative thinking, in this case, on the part of those designing environments for end of life care, just thinking in terms of well, how can you steal? And if you can’t literally enable control, how can you at least give the sense of being in control? How can the environment help give a sense of being in control? And you mentioned a Norwegian hospice facility where there were little control walls that could
Lori Pinkerton-Rolet
in Trondheim, yes, I sent that ahead.
Prof. Paul Eshelman
And it’s such a fascinating idea because it I’m not I didn’t I don’t know the specifics of that installation, but remote control i i suppose there’s even some level at which the person at end of life has that control in hand. But it’s it’s an example of this. How can you creatively give control to that individual so that they even though they’re losing ability to control everything about their life, even breathing? Can you give some sense that yes, they still can control their lives, they still can make choices.
Lori Pinkerton-Rolet
The example from Trondheim was there. This particular facility was set up just to explain to listeners and we will put a link to this on this podcast as well. But it’s a circular environment. And the rooms are coming off of the central sort of family open plan area. And then the the residents or patients have a remote control option to slide the walls back to their room there for giving more stimulation and opening up the room to the the larger group or pushing a button and sliding that that wall back. So that is that is what we’re talking about. And that that goes back to actually something as simple, Paul, as the window. Yeah, the window needs to open. You need to have a choice as to whether you want fresh air as to whether you want to smell the you know the the the rain as to whether or not you… I mean odours can be good or bad whether or not you want to smell farmyard scents that still is an option that a human being should be allowed to have.
Prof. Paul Eshelman
Yeah, I still can feel snow. I feel cold.
Lori Pinkerton-Rolet
So yes, it’s part of it’s part of life, however long that that life is when it comes to noise because you’re mentioning about singing, can the a lot of people feel end of life? Generally, we must make this a very, very quiet space. And I’m just wondering if quiet spaces can cause unintended consequences. And if they’re for things like finishes having a carpet on the floor, rather than vinyl to deaden sound is a good idea or whether that’s not that’s not really part of the picture that we should be focused on.
Prof. Paul Eshelman
Yeah. Another very good question, Lori. And there are obviously trade-offs for every one of these decisions, carpeting certainly would reduce sound, but it would create problems if incontinence, if, you know, the mass that surrounds end-of-life cares, can make him drive choices that really are unfamiliar choices, I guess I to pose challenges to creative minds. There, the opportunity in relation to what you’re asking now might be to think rather than thinking in terms of quiet, it’s in it could be in terms of how you will frame stimuli, so that you don’t have competing stimuli. So that if if there is, if if it’s sound that the person wants to attend to, there isn’t there aren’t competing sounds, if it’s smell, if they want to attend to if they want to make the choice of attending to this, the smell, or the odour, of aroma of good food, that there are other kinds of disturbing smells in the room, if there’s something you want to attend to visually, that the that that experience is framed in a way that they can attend to it and not having not have competing visual distractions, that television playing in the background or whatever. So that that idea of looking deliberately at sources of stimulation and hopeful and positive stimulation, and then thinking in terms of well, how could I frame this experience so that at, you know, even if it’s a short period of attention span, that that stimuli is really an enabled by the design of the environment in that moment.
Lori Pinkerton-Rolet
You’ve, you’ve given me a lot to think about and the listeners just on that one point. So if we were to say odours and somebody wants to smell fresh food, and there’s a time where fresh food is coming in, the other smells that might be in the room, because you were talking about end of life care from a practical standpoint, can at times be messy. So you might have something like a vinyl floor, that means you also might have the odours of cleaning products that might want to be that might interfere with your smell of the food, you might also have aromatherapy options within that suite. So if I to boil this down the the challenge that you’re you’re setting in essence is for designers, architects, operators, etc. To look at these elements and say,wow can we separate these out, and again, it goes back to choice…choice in whether the windows open or not choice in what I’m able to smell. So is there a scent diffuser that might override for example, I’m just talking off the top of my head, the scent of the cleaning products that perhaps people are asked to choose? You know, you could have the centre, the centre, this centre in the room do any of these appeal or do you want none of them? There would be an opportunity for more interaction without overwhelming somebody on some very simple questions of using our senses. Whether it’s sound, whether it’s odours, whether it’s, you know, taste, you automatically get some choice in taste, generally speaking, but is that is that the crux of what you’re saying.
Prof. Paul Eshelman
Yeah, I mean, I, what came to mind as you were speaking, Lori was the idea of wine tasting and taking a sip of water to cleanse the palate between different wines that are being tasted. And that’s yeah, a palate cleansing opportunity, what what could a creative mind make of that in terms of interpreting that concept or the metaphor into the design of space for end-of-life care, it’s just there’s so many wonderful opportunities here for, for creative thinking.
Lori Pinkerton-Rolet
And I think this, you’ve used the the term richness in the experience richness in that experience throughout our discussion. And that really does appear to be the the opportunity for people to to look at what what those elements might be, and what can be offered to both families and patients in that situation. I just we’ve touched on the other elements that I mentioned that the focus on at the beginning of our discussion, I just would like to get from you the meaning of the the term ‘design positive restoration,’ because the report makes a point about ‘design positive restoration’, could you for people that will be looking up the report separately, can you just give us a little bit more of an insight right now as to what that phrase means and why it is important as just a kind of summary of the discussion we’ve had today?
Prof. Paul Eshelman
Well, it’s a restoration, using the word restoration with end-of-life care is a misnomer in the literal sense, but it’s if you look at it, as you are alive until you aren’t alive, then there is the past the potential for positive stimulation for enrichment of that life that remains. And that is such an opportunity. Looked at that way. So thinking in those terms of how can you provide positive stimulation that that even momentarily distracts from the reality of what the person is going through that reality of a progressive loss?
Lori Pinkerton-Rolet
And personalization, so the quilt that you mentioned earlier, you know, do do designers or providers, you know, have a pillow menu that people can try when they first get there is this, you know, is this the bed you’re being given in the end the pillow you’re giving and that’s what you get, does not seem as personalised as are you more comfortable on this or this?
Prof. Paul Eshelman
Oh, in hospice facilities in many people pass in nursing homes, certainly in hospitals and that that expression of person is and is important in to some extent, it’s important if it’s visually accessible or tactile, he accessible to the person who is experienced the end of life. But it also is a manifestation of that individual’s life that anyone coming into the room, the the care staff, the friends, any anyone happening to pass the door, if they can look in and see these markers of the richness of that person’s life. It immediately gives more meaning to that person. They’re no longer just a being who’s struggling in the last moments. But they’re they’re human being who had a rich life who was meaningful in that life. And so that…from my mother in law just passed away and it was another moment. Gee, what can I do to that comfort and I an idle moments, I went into the garage and pick some wood that was around and put together a corner shelf that we in her. She was in a retirement community. I put it in the corner when you enter her room. And we put on that several items that were she was a wife of a farmer farmer’s daughter so we put these He’s markers of the meaning of farming. And it’s several people who pass by comment that about, oh, I didn’t, I didn’t realise all that about her life.
Lori Pinkerton-Rolet
‘Cause it’s a celebration of the person’s life, while they are still there to celebrate with us,
Prof. Paul Eshelman
using using the environment using is behind the help.
Lori Pinkerton-Rolet
And there can be no greater honour for a designer than to engage in the atmosphere in which someone will spend the end of their life. But what I’m hearing very strongly is, it’s the personalization of that the opportunities for personalization that can be drawn in through family, if there’s not family, through staff, through digging deeper, and allowing these choices and interventions and options to be there to celebrate that person’s life, whether it’s the cats on the bed, or the or the quilt hanging on the wall, or the shelf with the memories of things that have to do with farming, because that was part of that person’s life. Um, Paul, this has been absolutely fascinating. I’m, I’m so very grateful to you for sharing your personal and professional relationship with this incredibly important topic. And I think you’ve laid it, you’ve laid a bit of a challenge down to all of us that are working in this space to really consider the specific points in in our work going forward, and to explore them further, to see what we can do to offer those those options.
Prof. Paul Eshelman
Oh, thank you so much for the opportunity. And thank you for what you do, you are giving voice to a lot of important ideas and information.
Lori Pinkerton-Rolet
And you’ll find links to the Cornell University report and other research related to this extremely important topic on the podcast page for this episode at www Third Age Dot Design. And having given this interview some additional consideration on my part, it occurs to me that I was present for my father in law’s end of life. And as family members, you feel kind of helpless, you wish you could do something in any way. And by designing these spaces to allow families to personalise them, provides them with perhaps some agency in that process. Thank you again to Professor Eshelman. Go into any care facility almost anywhere in the world. And you’re going to likely see some people in the dining room wearing an adult bib, which is sometimes also called a tablet. And in fact, I’ve designed special storage units for these over the years. But somehow, I’m not sure as a sector we’ve got this quite right. While people will still happily put on a plastic bid with a picture of a lobster on it to crack claws at the local lobster shack. Most of us do not want to dine wearing a bib in day to day life. And it’s not really dignified. Is it? Some clever product designers have been looking at this in several countries. But certainly one of the best we’ve seen is an offering from the United Kingdom from a company called Bibetta. They’ve taken a waterproof lightweight backing, put two absorbent layers over the top and created a pashmina scarf style clothing protector. If you’re going to wear this with a cardigan or a blazer, you wouldn’t even know that it wasn’t a beautiful silk blouse. And for the gentleman…they have a crossed scarf-style design. It’s really very, very smart looking and dignified. We’re going to put a link to Bibetta on the podcast page for this episode at www.ThirdAge.Design. But if you’re an operator, you may want to look into some alternatives in your own country. If you’re a designer, you may well want to just make your storage areas a little bit smaller. Our monthly check now of the TAD International Events Calendar. The Alzheimer’s Association International Conference runs from Sunday the 28th of July to Thursday, the first of August, in Philadelphia, Pennsylvania, USA and coming up in October in Geneva Switzerland…it’s the place to be from the eighth to the 10th for New Horizons: Innovating for Dementia. I think I better go ahead and book that one for myself. It sounds very, very interesting. You’re gonna find more information and additional events on the International Events page on our website. Thank you to today’s special guest Professor Emeritus Paul Eshelman, to our sponsors Wissner-Bosserfhoff-elevating nursing care with intelligent beds from Wissner-Bosserhoff blending modern day smart care technology with comfort and empowering caregivers worldwide. To our editor and producer Mike Scales to Valerie Adler of The Right Website, to Peter Thorne, who composed our theme music and is playing the piano with Mary Blanchard on flute and of course, to you for listening. I’m Lori Pinkerton-Rolet and I do hope you’ll join me for the next one!