I met this research project walking down a corridor

Two days into my mother’s last hospital admission, I was walking down the corridor when I discovered a seating alcove. It was located between the entrance to the visitor’s bathroom and the lift lobby, just out of sight of the lift doors but less than three steps around the corner. As an architect, I’ve long been a fan of intimately scaled seating alcoves, and while this one was not particularly intimate, in its scale or location, or even the materials with which it was furnished (and granted, furnished may seem too extravagant a word for bright orange vinyl), I nonetheless found this gesture unusually generous. At least to begin with. An empty alcove in which to take some time out, a rare snippet of space not dedicated to the functional goings on of the hospital. This opinion changed the day I encountered a woman sitting in that alcove. Although, she wasn’t sitting so much as falling apart. Some of the details are hazy, she may or may not have been holding a phone to her ear, but the noises she made were more animal than human. I’ve never seen another human so distraught and in what struck me anew as an unbearably inhumane space. Artificially lit, with pale yellowy-cream walls, and barely comfortable built-in seating in that ghastly bright orange; the only outlook, a view of two toilet doors. That was the first time it occurred to me that the built environment needs to do more. That this is unacceptable.

Accommodated within a single occupancy room, across the hall from my own mother’s six-bed ward, there was a much younger mother. At least, I assume she was much younger based on the age of her husband and the two very small people frequently seen hanging from his limbs. Single rooms, of which there were only a handful, were reserved for patients who were nearing the end, a fact we only came to learn after my own mother was ‘upgraded’ to one of them. Walking down the corridor that afternoon, I watched this father follow a doctor out into the hallway. I paused, about 8 m distant, while others continued to bustle past, attending to other patients, other duties. I didn’t need to hear the words spoken between the doctor and this man to plainly comprehend the meaning of that conversation. It took mere moments for him to slump backward into the wall behind him, no longer possessing the strength to hold himself upright against the weight of the words he was hearing. Like the woman in the alcove, here was another person whose world was collapsing in around him. In the middle of a corridor. In full view of strangers. All politely trying to look away.

My own corridor experience was hardly unique. My mother’s decline, when it eventually took place, unfolded fast. One day we were eating brunch in a seaside town, planning an upcoming trip to Europe, and barely a month later I was standing in a hospital corridor making phone calls. Deep down we had all known it was coming; Mum had been diagnosed with an incurable form of breast cancer more than a decade earlier. So, even then, I could recognise that my experience likely paled in comparison to the woman I’d seen in the alcove. If you’d observed me on the phone that day, you would have thought ‘there’s a lady who is holding it together, she does not look like her world is collapsing in around her’. At the time that, at least, felt like something. Although I am an architect, I couldn’t tell you about the state of the vinyl flooring, nor the hue of the lighting overhead. But what I do recall, with the sharpest clarity, is the utilitarian spaces that flanked me, and my acute awareness of the incongruity of their quotidian banality in relation to the phone calls I found myself making. I stood wedged within the H-shaped intersection of two busy thoroughfares—on one side of me an open door into a small but shiny stainless steel kitchenette, on the other a darkened linen store. Ahead, the door to a six-bed ward, and behind me a row of closed doors concealing those who were most unwell. From that position I made one phone call after another, as strangers continued to circulate around me. I spoke with one uncle. Then the other. An aunty. Some close friends. I informed each that there would be no more chemotherapy, that they probably shouldn’t wait too long to visit. Standing in that corridor, I remember thinking that this was the moment where the future we’d all assumed we’d get to have, the one where Mum would retire early to dote on the grandchildren my sister and I had not yet got around to having, had been cruelly wrested from us. It is only knowing what I do now, that I understand that future had foreclosed 10 years prior, on the day of that very first diagnosis. Yet standing in that corridor was the moment that it all became suddenly real. Stuck with the weight and melancholy of so much irretrievable hope, I was leaning against a wall, staring at a pile of hospital laundry. For the third time that week, I doubted this was really the best that architecture could offer.

Writing these experiences, more than a decade afterwards, and 4 years on from the outbreak of the COVID-19 pandemic where we were exposed to so many stories of patients dying in isolation—of grief-stricken loved ones unable to enter the hospital (or sometimes even the same country) to be at their side—these anecdotes may seem pedestrian. Yet the loss of a loved one, pandemic or not, is one of the most devastating experiences many of us will face. Granted, positive changes in hospital design were already afoot when I was having these experiences in 2013. Here I refer to developments such as the Maggie’s Centres in the UK, the Planetree Movement within the USA, and the Cedars Cancer Centre (see Pang, Adams, and Lee 2018). But even now, a decade on, for every beautiful, thoughtfully designed palliative care unit, there will be half a dozen others (or more) that are built to look like any other hospital ward. This will be justified with sentences like, we didn’t have the budget to do anything better. The ambition of this article, however, is not to argue for high-end architectural solutions within a healthcare system that, as one of this article’s reviewers rightly pointed out, is already plagued by budget cuts and ageing buildings; and where the very act of replacing a hospital interior can inflict environmental damage through the mere process of adding waste to an already overburdened planet. Instead, this article advocates for more thoughtful solutions that need not necessarily cost more. It will make this argument by drawing attention to the way that aesthetics are felt during times of vulnerability; and the ways that the built environment can exert subtle influences on our behaviour, sometimes with lasting consequences. Blaming design compromises on budget, as my broader research suggests, is often the most convenient excuse for decisions that are more to do with procurement processes; preferred supplier agreements; or general hospital design guidelines whose relevance to palliative care no one has thought to question (McLaughlan and Kirby 2021; McLaughlan and Richards 2022; Mclaughlan and George 2021). These compromises are thus often less about budget, and more about a lack of understanding regarding what people experience in those moments and why we have a responsibility to design better for them.

Collecting stories, otherwise known as semistructured interviews

In the 13 months spanning April 2021 to May 2022, I conducted interviews with patients and the family members of patients to understand whether people felt that the inpatient unit they were occupying supported their experience of palliative care or didn’t; and what elements or characteristics of the built environment contributed to a feeling of being supported or not. The four facilities where the interviews took place are representative of typical Australian inpatient facilities for palliative care; all provided reasonable levels of privacy, achieved largely through the provision of predominantly single rooms (with a small percentage of double rooms), alongside a family room and outdoor garden spaces. For two of the four facilities, the outdoors could be accessed directly from patient rooms located on the ground floor, while two were multistorey buildings where adjacent, ground floor garden spaces could be accessed via a lift. All four facilities had undergone recent cosmetic refurbishment (between 2016 and 2019), predominantly to update tired-looking facilities (three of the four were constructed between 1988 and 1991, while the fourth was an amalgamation of a 1964 hospital building with a more contemporary addition), but also often with a view to creating a homelier environment. As such, all four facilities were fairly consistent with contemporary recommendations relative to designing for palliative care (McLaughlan and Richards 2023).

Interviews followed a two-part format that included an initial discussion regarding the patient’s length of stay and any previous experiences of hospitalisation, both at the interview site and other hospitals they’d experienced. In the first part, participants were asked what they felt the most salient features of the room were; how they felt about the hospital environment generally; and how they used various hospital spaces across the course of the day (including when visitors came). Worth noting is that pandemic-related visitor restrictions varied across the data collection timeframe, however, all facilities tried to accommodate small groups of immediate family and close friends wherever it was safe to do so, meaning most participants could speak to visitation experiences. Nonetheless, this did have an impact on the study in terms of not being able to capture the experiences of large (or extended) family groups, while dedicated family rooms, where provided on inpatient wards, were not accessible over the duration of our study. For the second part of the interview, participants were shown 12 images that depicted different design approaches to palliative care spaces and asked what they thought of each image; and whether there was anything they liked or didn’t like about it (figure 1). The 12 images were selected to include circulation spaces, patient rooms and communal family (or lounge) room spaces. Seven of the images depicted standard or typical Australian palliative care wards (six of those from the recruitment sites themselves) while the remaining five images depicted recently constructed hospice projects within Australia and internationally (for further details on image selection refer McLaughlan and Richards 2023).

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Figure 1

Eight of the 12 photographs used in the photo-response interviews. Photographer credits for each image are as follows: images 1, 4, 5 and 8 by author; images 3, 6 and 12 by Keith Hunter; image 11 by Alicia Taylor.

While various definitions are offered relative to the end of life, the Australian Institute of Welfare observes that ‘the terms ‘end-of-life care’ and ‘palliative care’ tend to be used interchangeably’ despite being different concepts. They suggest that ‘end-of-life care typically refers to the twelve months prior to death’ while a patient may be engaged with a palliative care team many years in advance (Australian Institute of Health and Welfare 2016). Perhaps as a result of this confusion, the term ‘actively dying’ is often used to refer to the ‘hours or days preceding imminent death’ (Hui et al 2014). Palliative Care Australia, by contrast, suggest that end-of-life care is ‘a specific phase of the palliative care journey. Generally … the last few weeks of life’. Their definition goes onto recognise that ‘the needs of the patient and their carers are higher’ during these final few weeks (Palliative Care Australia 2024). In this article, I will take a middle ground. Although I interviewed six family members who, according to those who assisted with recruitment, would likely be approaching end of life within the few months following our conversation, I will discuss only those interviews where family members themselves acknowledged that the loss of their loved one was imminent.

The first story is of a man in his mid-70s whose wife, on admission to hospital for dementia treatment 9 weeks prior, had been diagnosed with advanced cancer and admitted straight to palliative care. I will call him George. Two were women whose mothers had been ill for some time, one was in her mid-30s and the other in her mid-50s. I’ll call them Alice and Denise. The fourth, I spoke with 12 days before Christmas; she was a woman in her mid-60s whose husband had been admitted for respite care 4 weeks earlier but had begun to decline rapidly. She had been told that they likely only had a fortnight left. I will call her Anna. While these pseudonyms are imperfect, the choice to attach them to these stories is a deliberate effort to reassert that they should be seen not as research ‘participants’ but, instead, as people trying to negotiate lives and responsibilities that reached well beyond the experience of sitting all day on a hospital ward. The decision to honour these four stories in this way, and to tell them in relation to my own experience is, to borrow the words of Tumarkin (2019, 5), a scholar whose work is closely tied to the trauma of others, ‘a way of not replicating the damaging dichotomy between the researcher’s work and their being in the world’. Advocates of the use of autoethnography suggest that bringing personal experiences to the fore can enable a critique of existing cultural practice by unlocking conversations that might not otherwise occur within academic literature (Adams, Jones, and Ellis 2015). Autoethnography can be useful, as another (previous) reviewer observed, ‘when other avenues of scholarly investigation seem exhausted, or unsuited to the subject matter’ (McLaughlan and Freeman 2019, 259). In the context of palliative care, interviews are conversations, made up of stories, experiences, perceptions, feelings. While typical research standards may assert that such a small sample size is insufficient to justify an entire article, I argue otherwise. These stories provide a richness of insight that is seldom present in the literature on designing for palliative care, and in that richness these stories are both moving and powerful. The decision to focus on these four stories here in no way discounts the accounts of the remaining 20 patients and 12 family members I spoke with, whose invaluable insights have been carefully analysed and reported previously (McLaughlan and Richards 2023).

Designed for function, experienced with emotion

It has long been acknowledged that hospital environments generally and, by extension, those created for palliative care should feel more homely than institutional. Bates (2018, 5) has written about the various ways that homeliness, as a concept, has surfaced through the history of hospital architecture as a desire to ‘humanize’ healthcare environments and make them less ‘inhospitable’. Adopting a domestic aesthetic to offset an institutional appearance is almost as old as the invention of the asylum typology (Taylor 1991). Yet, Bates (2018, 6) observes that despite this being an old idea, following World War II we saw a renewed focus on humanising healthcare environments owing to ‘fears about the loss of the ‘human’ aspects of medicine with the rise of technologies’. In more contemporary literature related specifically to palliative care, this desire has been restated but with varying degrees of tangibility in relation to the built environment. For example, the use of ‘joyful colours’, the inclusion of artworks, windows enabling views to nature, natural light and (where possible) accessible gardens have long been suggested (Fleming, Kelly, and Stillfried 2015; Hajradinovic et al 2018; Rowlands and Noble 2008; Timmermann et al 2015). Our own recent work, however, argued for a redefinition of homeliness within the distinct context of palliative care; one that goes beyond simply looking comfortable to support patients and family members to feel comfortable enough to re-enact meaningful rituals of home (McLaughlan and Richards 2023). This includes things like having a private conversation with a partner, sharing a cup of tea with a friend, watching a child play on the bedroom floor, or spending time outdoors. Multiple aspects of the environment contribute to whether or not a person feels comfortable to re-enact these rituals within the hospital, such as the proximity of different spaces, the size of the inpatient room, how far away the garden is—and how easy it is to traverse—whether a chair looks inviting to sit in, whether the medical equipment is too visible, whether you can open a window to obtain fresh air, what the quality of the light is like (McLaughlan and Richards 2023). This work was a response to the conceptual ambiguity of homeliness that acts as a barrier to its successful implementation and is made more difficult by the fact that understandings of what constitutes homely are articulated differently across disciplines as diverse as anthropology, psychology, philosophy and planning (Richards and McLaughlan 2023). We spoke not just to patients about their needs, but also to architects about what they perceive to be a homely environment and how they design in response to this perception (Mclaughlan and George 2021). Below, we extend these understandings further by addressing the specific needs of family members whose loved ones are nearing the end of life, recognising that this experience is very different to that of respite care or temporary hospitalisation for symptom management. While the four stories discussed here remain in keeping with the broader project findings, they also make clear that, when a loved one is nearing the end of life, aesthetics are felt; they are experienced emotionally. In this context, the desire for homeliness is not reflective of a simple preference but a desire that things should ‘feel different’, that the surroundings themselves should somehow respect the gravity of one’s impending loss. This section will discuss both functional impediments to spending time with loved ones nearing the end of life and what I refer to as a kind of weightiness that the built environment takes on in these circumstances, that is, a sense that the environment weights heavier than it would ordinarily.

At the article’s outset, I introduced the idea of the ‘worst-case scenario’, where the function of the hospital and the home become inverted, not just for patients, but for their families as well. Scarcely acknowledged is the extent to which people put their own lives on hold as a loved one nears the end of life. Alice, whose mum had been in hospital for 14 days, was spending 5 hours a day there before heading into the office to do a few hours work in the afternoon. Anna, whose husband had been in hospital for 4 weeks, and who had a 2-year-old grandson, had a ‘tag team’ routine with her adult daughter that meant someone was always at the hospital with her husband while the other was at home minding her grandchild. George whose wife had been in hospital for around 9 weeks, said “I’ve been here every day, seven days a week”. When asked about this, George explained that he’d simply put his work on hold; he told me ‘I was working as an architect, but I love my wife so [shrugs] I’ve got a problem’. The problem to which he referred was, simply, what else can one do when they know the days they have left with their life partner are fast diminishing? Denise, whose mother had been in hospital for almost 5 months, remarked simply ‘I’ve been living in hospitals for so long’. The quality of palliative care spaces directly impacts the quantity and quality of time people can spend with loved ones at the end of life. Echoing the broader project findings, Alice said that she could only stay with her mum for “a maximum of five hours before I need to just leave and have some fresh air”. When I observed that 5 hours is quite a while she said “I know, but my mum’s dying so I can’t leave her. I have to maximise the time I have”.

While fresh air, and the ability to access it, may be considered a functional design element, another functional aspect that had a direct impact on the ability of family members to stay close to their loved ones was opportunities to stay overnight. The design guidelines for palliative care in Australia recommend providing chairs that fold into beds to enable family members to sleep overnight in the hospital. In more contemporary facilities, custom-built day beds or ‘murphy beds’ (those that fold down from a wall pocket) may be provided. While the attention accorded to many of these sleeping provisions suggests an assumption that they will only be used at the very end, perhaps for a night or two, conversations with loved ones confirmed this is not the case. Denise had only recently stopped sleeping overnight with her mother because the chair she was provided caused her back and neck pain to the point where she could no longer stay overnight. She said, “there’s a policy that states ‘We welcome overnight visitors’ but [the chair is] so uncomfortable that … it has kind of forced me to go back and sleep at home … although this was initially distressing for Mum”. Particularly in our post-COVID context, such provisions may seem controversial. Healthcare professionals may argue that it is healthier for families to take a break from the hospital and obtain a better night’s sleep in their own bed. Yet the very ethos of palliative care is to provide choices that can honour the individual needs and preferences of each patient and their loved ones, and to not make more difficult those experiences. As Denise put it, ‘if I were told mum had days left, if I did want to stay with her overnight it would be really uncomfortable; I’d still do it, but I’d suffer’. George also spoke of the experience of staying overnight and lamented the fact that, where a foldaway bed was provided, the height of his mattress was so far below the height of a hospital bed that he could not reach out and hold his wife’s hand, or look at her while they feel asleep: ‘you don’t have eye contact, you know? [instead], you look at the clinical elements of the bed, not the face of the relative you want to look at’.

Moving beyond the functional, the following words were used to describe palliative care environments by these four family members, referring either to environments that had been experienced directly or those depicted within the photographic prompts: ‘cold’, ‘unwelcoming’, ‘distressing’, ‘sterile’, ‘bare’, ‘basic’, ‘clinical’, ‘claustrophobic’, ‘stuffy’, ‘frightening’, ‘draining’, ‘depressing’. What was most interesting about this is that the facilities in which the interviews took place were, as earlier noted, all of a reasonably high standard. Did they look like hospitals? Yes. But were these environments particularly clinical or sterile relative to other hospitals I’ve seen? Most certainly not. Image 5, for example, shows few clinical indicators other than the hospital bed, and yet it was image 4, with multiple gases, switches and call buttons in plain sight, that was often perceived to be the ‘warmer’ of the two images. This intimates that something deeper is going on here, these environments are somehow emotionally triggering in subtle and nuanced ways that need closer attention. My first indication of this occurring was in my conversation with Anna. She began talking about the hospital foyer which, in lieu of a photograph, I will describe for you. The building was entered on the ground floor, through glazed sliding doors. The entrance foyer was oblong shaped, approximately 5 m in width, by perhaps 15 m in length. As one entered through the doors, there was a glazed wall immediately to the left that overlooked the hospital’s ring road, and gazing directly ahead. An image was suspended ahead of the glazed wall; from vague recollection, this was an old aerial photograph of the hospital grounds. Nonetheless, this space was flooded with natural light. As you turned to the right, away from the glazing, there was an entrance counter, constructed of a contemporary light-coloured timber, modern-looking with a subtle grain, and a white stone top. It was a little boxy and sparse, but it did not seem offensive. Behind it hung a white board beside a wall of white storage cupboards. The ceiling was a regular height (around 2.4 m), constructed of hospital-standard ceiling tiles on a metal grid, with integrated fluorescent lighting panels. The floors were a dark grey vinyl. This entrance space had been recently renovated and there appeared nothing untoward about it. Somewhat characterless perhaps but not unpleasant, and certainly not one of the worst I’d seen. As such, Anna’s reaction to this space came as a surprise. She said:

We dread walking in … When we walk in, that presentation frightens me … it’s the colour thing. It’s the lack of, just that feeling, it’s not personable… the desk needs to be a little bit friendlier for people to come in and speak… it’s about, thinking about, what would you want if you ended up in that position? Would you want to come in and see this? No, I don’t think so.

Anna went onto explain that you need to have all of your energy to give it to your loved one and, at a time when you are already exhausted, you can’t afford for the built environment to feel like it’s draining your energy further.

This desire for the built environment to respond to the gravity of the situation, to acknowledge that this experience, for the individuals involved, was anything but quotidian echoed through all four accounts. But this was often couched in terms of thinking about ‘other’ people, just as Anna chose the words ‘that position’ instead of ‘my position’, it was common for these concerns to be raised relative to what patients, or other family members might be experiencing. While this may be seen as a desire not to complain in the face of so much gratitude for the quality of care being received, it may also indicate a heightened awareness that others are suffering similarly; and nonetheless provides insight to the frustrations and shortcomings of these environments, and the ways that they may make these experiences more difficult. George, speaking about the environment he was in said:

The nursing staff are fantastic. The medical staff are fantastic. The location is fantastic… But the design is very clinical … very basic. The design is not catering for palliative care, for someone that is about to die… The furniture is very clinical… and hasn’t got a sense of homeliness in it. But I’m not complaining, I’m very grateful to have a room here … But the fact of the matter is, it is like a normal standard hospital room … there’s no distinction between palliative care and normal patient care.

For both Denise and Alice, the first of the photographic prompts acted as an invitation to express this desire for difference. Alice remarked, ‘it’s very clinical and white… it’s just the bareness of it. I just think, in a palliative care setting, that’s the last thing you want them to feel’. Denise said, “it looks a bit cold … it still feels like a hospital… the thought of palliative care is more of a family-like environment for end of life”. When pressed further about why she felt this image communicated these things to her, she explained:

the images that come off as hospital-like—the restrictions, the visiting hours, you know, the rules—it’s almost a bit of a stressful environment vs a more relaxed thing that’s focused more on family, where you feel that you’re wanted and welcome. … I feel that in some environments I’ve been more of an inconvenience… it’s almost like the environment’s set up so that you don’t want to stay too long… I associate palliative care more with being comfortable at the end of life as opposed to [pause] not feeling like you’re in a hospital.

This desire for a perceptible difference in appearance was often articulated as a sense of homeliness. As we’ve written previously, homeliness is often seen as the opposing aesthetic response to an environment that feels overly clinical (Richards and McLaughlan 2023). Yet, for these four family members, homeliness seemed to encompass more; a sense of welcome, a very real need for comfort, and what might be termed ‘imaginative respite’—that somehow the built environment might alleviate the focus on an unbearable reality.

Denise and Alice, both daughters of patients, were highly attuned to cues within the photographic prompts that extended a sense of welcome to family members. This highlighted the subtle ways that built environment communicates, particularly at times of vulnerability. In relation to image 8, for example, Alice said “there’s nothing there from a family or patient’s perspective that’s welcoming or warm. There’s just nowhere to sit down if you want, even the picture frame is really depressing”. Curiously, image 8 depicts a couch and two chairs yet these did not communicate to Alice that she was welcome to sit there. Of the same image, Denise remarked:

You can’t work out what the function of the room is, whether you’re supposed to relax there or what. It looks to me like more of a waiting room for five or ten minutes, as opposed to somewhere for relaxing. I wouldn’t feel like I could relax.

Conversely, in relation to image 3, Denise responded:

I think that the wood creates a really warm atmosphere and also the fabric as well. If you can see a sitting area that’s a warm, inviting sitting area… that’s really nice, that there’s somewhere for families to come and unwind.

Similarly, in relation to image 6, Denise remarked that it was ‘set up for visitors as well’. Reflecting on the various hospital environments she’d experienced with her mother, she recounted that:

Some places don’t even have an extra chair … some places don’t really make you feel welcome, like, it’s just for the patient. The fact that you’ve got two of certain things [the chairs] makes you feel that you’re welcome there.

Alice had a similar reaction to image 4, observing ‘there’s an extra chair there, for my father, or a visitor’.

Chairs engendered so much discussion that my research fellow half-joked we could write an entire paper on them. Within the context of palliative care, chairs were a signifier, not just of welcome, but also of comfort and reassurance. Anna discussed chairs repeatedly. Viewing image 11, she remarked ‘that’s nice and modern… without those hospital-type chairs that we seem to find everywhere that squeak on the floor and are a nuisance’. In relation to the environment she was in, she suggested ‘renewing the furniture so you don’t feel like there have been 2000 people sitting on this one chair and it’s not been looked after’. She also relayed an aversion to ‘the feeling of hard chairs that are covered in vinyl that they have just because they are easy to clean’, and explained that ‘we had to bring rugs in to cover the chairs because we thought they were just too, depressing’. George, as well as being in hospital with his wife, had recently spoken with a friend whose wife had also just died. These friends were on his mind when he remarked, of two chairs in the room in which we were sitting, that had steel tubular frames and lightly upholstered seats and back rests:

It’s important, you should add different chairs… [these two] are in fact visitors chairs, they are for relatives. And they may spend a long time. Some of them may stay for days because, if their dear ones are dying, those chairs will be their chair for maybe two to three weeks… and they look like conference chairs. If you have comfortable chairs and you’re missing your wife, your husband, your mother or father, you feel more comfortable.

George also acknowledged that, given his wife had advanced dementia, ‘she cannot tell the difference between furniture’ but that if he were here for end-of-life care, and did not have dementia, then ‘I’d love to stay here but I’d hate the furniture’. Many family members, when asked if the environment could be improved, seldom complained or spoke about their own needs, but these concerns, often expressed as concern for ‘others’—be that other patients, or other families—encapsulate the frustrations that family members felt towards the built environment, and the ways that it was letting them down.

The idea of the built environment offering a kind of respite, or escape, from the reality of the situation arose in many of these conversations. Homeliness was often proffered as a way of achieving this, but other ideas also emerged, such as that of a resort-style aesthetic, offered by George. What these comments speak to are ways of navigating grief, and an expectation that the built environment may be able to somehow soften the edges of this experience. Anna, for example, made several changes to her husband’s hospital room. She told me:

you need to feel like it’s your own home… The doctor said to us, make this your room, his home, whatever you want in it. So, we marched in with two great big plants …beautiful big plants … some fairy lights … and some pictures and things to make it look a little bit warmer.

I was taken to see Anna’s husband’s room. She had also added a side table, cushions, and throw rugs on all the furniture so that, aside from the walls and floor, there was barely a hospital surface left to see. She told me that:

I think those things help the patient feel more comfortable… and I’ve seen that with all the things we bring in … his beautiful eyes opened up … and he started to get, you know, like “Hey, I feel okay.”

This seemed to be as much about the needs of Anna and her daughter as those of her husband, reflecting both a desire to feel like they had done everything they could for him for the time he had left, but also to soften this stark reality for themselves. She said to me, “we don’t want these mechanical looking things all over the place because it makes people realise where they’re at and I don’t think that helps”. The sense of being stuck in the hospital also arose in Denise’s comments about the value of having a garden space directly off the patient room; she said “you’ve almost got two living spaces, which creates the illusion of being not just enclosed in a hospital room”. George went a step further, suggesting that what was needed was ‘relaxing, holiday resort [-style] tables and chairs… and some cushions or stools for patients to hang up their feet, you know, to make it look like a holiday. Yeah, to pretend. It’s okay to pretend’. Alice, reflecting on images 4–6, remarked that ‘white walls are just basic… depressing to look at’. While on image 4, she remarked:

still feels like a hospital but with more warmth … I like the fact that there’s a picture frame, there’s a lamp… the colour palette, it doesn’t reflect all-white hospital linen… They’re really small touches but they make it feel like it’s a home away from home … little touches that make it feel less like a hospital.

Worthy of note regarding image 4 is that there is nothing here that suggests a high-end (or expensive) architectural solution is required for making a difference to the experiences of family members as their loved ones near the end of life. This image, in fact, depicts a hospital constructed in the 1940s, but where minor additions to this room have softened an otherwise institutional atmosphere. Speaking more broadly about the way that family members responded to the image set, one got a sense that people were scanning the environment for things that communicated homeliness and familiarity, to offset the sense of being in an unfamiliar environment where they did not want to be.

Making sense of what cannot be measured

While architects are attuned to notice the built environment and the way it affects us, non-architects are not. But simply because this impact is difficult to quantify, or because a person many not fully recognise this impact, does not correlate with that impact being negligible. For years following the experience of my mother’s hospitalisation, I obsessively gathered written accounts of experiences at the end of life. Those available were predominantly by writers themselves, discussing their own experiences as patients, or of losing loved ones: Sontag (1978), Didion (2005), Blain (2017), Rophie (2016), Codey (2011), Kalanithi (2017), Taylor (2016). I did this in the hopes of obtaining a single passage that captured the emotional baggage that I instinctively felt adhered to that ubiquitous combination of white walls, grey vinyl flooring, fluorescent lighting and stainless steel grab rails. Surprisingly little of the physical environment is observed within these texts, suggesting that perhaps patients do not feel the weight of the built environment in the same ways that family members do.

I was more than 2 years into this project, and nearing the end of my conversations with patient and family members, when I stumbled on a piece of writing by Bermann (2001), an American architect and educator who wrote an account of sitting with her mother as she died. In it she described a hospital environment that was unyielding in the face of her distress:

First I sat on the windowsill and laid my forehead against the cold glass… Then I sat on the floor. Then I lay down on the floor… I sat crunched up on the little metal ledge under the phone. There was no place to rest…

when we were waiting… when we weren’t talking, when we weren’t pacing the hall alone … when we weren’t crying together, or crying alone … [when] we weren’t lying curled up on the too-short uncomfortable bench-like couches with our jackets over our heads to keep out the fluorescent lights … my sister and I watched the clock.

Significantly, in her reflection of that time, Bermann distinguished between a hospital room that has a box of tissues, a window and a couch, and room that holds a box of tissues, a window and a couch. In her use of bold italics to emphasise the word hold, she made the point that architecture should not simply accommodate our needs but express compassion for that neediness. She suggested that it’s through these ‘acts of accommodation’ that architecture ‘let[s] us know that it has heard’ (2001, 52). When we speak of hearing, of listening, of extending care, the idea of ‘holding space’ is often discussed. In a way, Bermann’s work is suggestive of an architecture that might literally and figuratively hold space for the gravity of the experiences that occur within it. Her account appealed to me because it spoke to my interest in architecture that goes beyond efficient spatial layouts or safe bathroom configurations, and lays bare the reality; that palliative care facilities, quite literally, hold heartbreak within their walls. In the four stories that comprised this article, alongside my own, do I think that a better quality of architecture could have eased the pain of losing a loved one? Of course not. But I am struck by those environments I have encountered that could hardly have been less helpful. Surely, the least that architecture should offer within those moments is not to compound distress. Not to communicate that families are ‘unwelcome’, not to elicit emotional responses like ‘cold’, ‘distressing’, ‘sterile’, ‘bare’, ‘basic’, ‘clinical’, ‘claustrophobic’, ‘stuffy’, ‘frightening’, ‘draining’, ‘depressing’.

The articles we’ve published previously from this study speak to the value of nature; of fresh air and sunshine; the need for spaces that can provide respite from the intensity of this experience; or to spend time with, and as, a family; and—perhaps most importantly—environments where people feel comfortable to enact the rituals of home (McLaughlan and Richards 2023). I have spent 3 years arguing that designing for palliative care is about far more than simple aesthetics and yet, it is via aesthetics that we make judgements about what is or is not allowed in a certain place; of how we may occupy that space; and of how we might feel within in (Martin, Nettleton, and Buse 2019). During those 3 weeks my mother spent in hospital, my father, my sister and I often sat there for 8–10 hours. It was only my younger brother, 21 at the time, who we encouraged to keep going to work. Why did we do this? In retrospect, I believe it was because seeing him sitting in that hospital ward beside my mother’s bed, surrounded by five other beds where people of various ages laid in various states of decline, seemed somehow more wrong, more unfair, more tragic. To watch my brother—young, tanned, athletic and full of life—sitting in that ward somehow made it seem darker, more dismal. He seemed so very out of place there and it was too difficult to bear. In retrospect, I understand that this was a mistake. We were not doing my brother the favour we imagined. Yet this is just another example of how the built environment can subtly alter perceptions and behaviours in ways that we may not be aware of in the moment.

In 2018 I visited the Maggie’s Centre, designed by Richard Rogers, in Hammersmith, where a lovely woman accepted my visit without prior appointment. I introduced myself as an academic studying healthcare architecture, not as someone who had lost her mum to cancer just 5 years prior. These centres were the response of Keswick Jencks (1995), an oncology patient and landscape designer, who also felt that something needed to be done to combat what she identified as a kind of hopelessness of hospital spaces. I did not expect the experience of visiting this building to affect me in any significant way, yet no sooner had I walked out the front door and rounded the corner into a busy London street, then I promptly burst into tears. The irony of this experience did not escape me, that allowing people to quietly fall apart is exactly what the Maggie’s centres were designed for and yet here I was, 5 years later, sobbing on a London sidewalk long after the worst had happened. I felt overwhelmed. Devastated by the fact that there were these beautiful spaces, of calm tranquillity, filled with warm materials, views to nature, and natural light, and that we’d had nothing like it. But it was not that we needed award-winning architecture during those final days and weeks, we simply needed a space in which we could have felt comfortable. In fairness, I didn’t fully appreciate just how little time my mum had left but for all the days I travelled to the hospital, I also jumped at every opportunity to run errands, to accompany my dad to pick up the office mail, to fetch coffee for those who came to visit, anything just to get out of that six-bed room which felt like an unceasing assault to the senses. Of course, every time I stepped foot outside the ward, I felt compelled to hurry back and minimise the time I was away. Yet still, the pattern repeated. In thinking back on this time, I can see how it was made more difficult by the fact that every time my mother was sent off the ward herself for a scan, or some minor procedure, she would be placed in a different bed when she returned. So that, although she spent several days in a single room, she also managed to occupy four of the six bed positions on that ward. A total of five different beds over three short weeks. When I think back on this, the image that comes to mind is one of floating around a buoy in the ocean. My mother’s bed position was always fixed in place, although temporarily, but we were forever flailing around it, waiting for the storm that was buffeting us to ease, trying to find a place to anchor ourselves when all we had were lightweight chairs that we had to constantly jostle to keep clear of the various medical staff trying to circulate between family members to carry out their work. Reflecting on the conversations I had with George, with Anna, with Alice and Denise, small things can make a big difference. A chair that you can curl up on, drag your knees up to your chin and sink back into, can provide both psychological and physical reprieve. After all, it’s easy to forget the sheer energy that it takes just to hold oneself upright in a chair when, through grief and exhaustion, you’re simply trying to hold it all together.