The house at the end of life
Hospices will never cater to the vast majority of people, most of whom will die at home, in residential care, or on the ward of a mainstream hospital. Nevertheless, the modern hospice movement—which many date from the establishment of St. Christopher's Hospice in London by (Dame) Cicely Saunders in 1967—has proved to have been sufficiently innovative in palliative care that many other healthcare and pastoral institutions have found lessons there for their own work and treatment.
This was the thinking that prompted the Hospice Friendly Hospitals program at the Irish Hospice Foundation to commission a research study in 2005 into what Irish hospitals could learn from the wider hospice movement. This report, Honoured Guests, Honoured Places, was published in 2006. As the author of that report, I have since been working with a number of U.K. think tanks and advocacy organizations, such as Help the Hospices, on developing the relationship between the hospice movement and those caring for the elderly in general. A book based on this research, The Modern Hospice Movement: A Care Model for the Global Health Community, will be published by Routledge in 2009.
The original starting point for the Irish study was etymological. There are clearly linguistic connections between hospice, hospital, hotel, and hostel, which historically suggests a long-standing affiliation. Many other shared characteristics in the architectural family of those building types were also evident: in general, places which over time, and in many different countries and cultures, have cared for the sick, the poor, the elderly and, of course, the dying. Many of these were established and operated by religious institutions, and it is not surprising that they regarded the spiritual dimension of the care they offered to be as important as the medical aspect. It is finding the right balance between attending to the emotional and spiritual needs of the patient (along with a pastoral concern for their loved ones) and responding to the afflictions of the body that seems to be the principal lesson which hospitals are now learning from the hospice movement.
Even so, there will always be major differences between the two. Hospices enable people to die with minimal pain and maximum emotional support. On the other hand, hospitals are predicated on the need to preserve life, often at whatever cost financially or psychologically. As a lay visitor to a hospice, I was initially shocked to discover how minimal is medical intervention in this setting, other than providing pain control—though it made sense when one realised that, in the hospice environment, everybody shares the same explicit understanding of the imminent death of the patient. Intrusive procedures such as taking temperatures, testing blood pressure, or wiring people up to monitors are therefore usually deemed disrespectful and unwarranted.
However, the principal interest in what hospitals might learn from hospices was initially in terms of architecture, design, and environmental quality. What lessons were to be had by those planning or administering palliative care in general hospitals about the siting of buildings, their internal layout and patterns of circulation, the repertoire of spaces and facilities offered to patients, staff, and family, along with the ability to provide a quiet, restful ambience on an enduring basis?
Stephen Verderber and Ben J. Refuerzo, in their pioneering book Innovations in Hospice Architecture (2006), call this “palliative architecture,” and this useful phrase embodies everything ranging from the design of individual rooms, to accommodation for visitors, to retreat spaces or places of sanctuary, interior design, clear routes and processionals through the building, along with providing support and guidance; creating places for staff to be alone or together quietly in times of stress; establishing clear relationships between indoors and outdoors; designing out obtrusive and inappropriate activities in or near the places of care, and so on. There is, in short, a world of difference between a calm, well-ordered hospice suite and a noisy public ward in a general hospital, where the dead are trundled along corridors to the mortuary, along with the garbage bins and yesterday's laundry.
Some resist the idea that the hospice is essentially a building type, insisting that it is a concept of care that could be applied almost anywhere. While sympathetic to this idea, the fact is that most of the public regard hospices as special kinds of buildings—there are now 220 in the United Kingdom—and it is the quality of these buildings, their landscapes, and interiors that for most people provide their defining ethos. While there are many characteristics that define the best of the hospices and palliative care wards visited to date in the United Kingdom, Ireland, Norway, and Sweden, here I want to highlight four: domestic design; waiting and enduring; personal control of circumstances; and learning from hotels.
This is the most obvious difference between the initial impression of the hospice and that of a general hospital, though this principally derives from size and scale. Hospices generally offer far fewer beds, and can therefore afford to look more like domestic settings; indeed, many choose to site themselves in suburban streets, often in existing residential buildings. There are few long corridors, windows are to scale, lighting is personalised rather than institutional, color schemes and furnishings display a warmer, richer texture, and there is a deliberate attempt to hide any medical technology from public view. This effect can be created in an existing general hospital, as I saw in Stockholm at the Ersta Sjukhus, where a conventional Nightingale Ward on an upper floor had been cleverly redesigned entirely to look and feel like a Swedish country house hotel.
Waiting and enduring
Most time spent by patients and visitors in both hospitals and hospices is waiting time. Philosophers from Henri Bergson onwards have distinguished clock time from psychological time, waiting from enduring. Some forms of waiting are like a season in hell, and what hospices have managed to do is to provide settings and interiors that alleviate the worst of intolerable waiting by creating calm rooms for patients, retreat rooms for families to congregate and, when necessary, views to nature and the weather (which changes all the time), and access to gardens for those able to use them.
Personal control of circumstances
What patients and caregivers like least about hospitals is the total lack of control over immediate circumstances: privacy, lighting, noise, smells, warmth, or coldness. These are usually controlled centrally. The single occupancy room in a hospice, not surprisingly, offers much more personal control over most of these factors: windows can be manually opened or closed, thermostats can control the ambient temperature, bedside lights can be switched on or off, and doors can be closed. These are the small things of life, but to the sick person they often make the difference between comfort and anxiety, inner peace and distress.
Learning from hotels
Not only have hospices learned much from domestic design, they have learned a lot from modern hotels in the way they handle matters of access, circulation, and discreet control. Reception desks are immediately visible and welcoming, good signage and clear layout lessens the anxiety of getting lost in a maze of anonymous corridors, armchairs and discreet groupings of chairs in corridors allow a variety of informal gathering places, and common areas such as lounges are supplied with facilities for making tea and coffee. The needs and routines of patients and their families are put first.
Over the next year I shall be interviewing hospital planners and administrators, as well as architects and designers, all of whom are currently engaged in developing new palliative care buildings and projects. I shall be starting at St. Patrick's Hospital in Cork, where a new hospice is currently being designed with Jane Darbyshire and David Kendall Architects. Together we shall be seeking to understand the best procedures and processes by which the needs of patients, their families, caregivers, and other medical staff can be enhanced and made more meaningful through good design, innovative architecture, and more appropriate forms of management and organization. In Ireland today more than half of those who die each year die in hospitals. There is much to be learned from the hospice movement as to how their deaths can be achieved with greater dignity, calmness, and grace. HD