Person-Centered Care: An International Dialogue

Abstract

Andrea Möhn, an architect from Rotterdam known for highly individualized behavioral health designs for the developmentally disabled, was chatting with me after her recent virtual lecture to my students about her unique design work. She had the idea to convene a few friends for discussions about our shared interests which seemed like a simple technological alternative to encountering others at a formal event, and I encouraged her to act on it. At the invitation of Möhn, six international colleagues and friends from five countries who are interested in design for health came together for conversations in a series of virtual Zoom calls. Many of us have been accustomed to interacting with professional colleagues at international conferences, learning from the perspectives of other cultures, but times have changed as we react to the coronavirus and shift to virtual meetings. The virtual technologies that have proliferated coincident with the pandemic now makes this sort of conversation easy to accomplish.

Person-Centered Care

On the first call, the discussion turned to the issue of design for person-centered care. Möhn asked Helle Wijk, a nurse and researcher at the Sahlgrenska University and University Hospital in Gothenburg, Sweden, for a definition of person-centered care based on her experience. She works with doctoral students researching environments for care. Wijk offered the following in an email to the group:

In person-centered care, patients are seen as persons who are more than their illness. Person-centeredness is an ethical standpoint that guides our practical actions as fellow human beings and professionals. Person-centered care entails a partnership between patient, their relatives, and professionals, in health and elderly care and rehabilitation. Based on carefully and perceptively listening to the narrative of the patient (often combined with the narratives of their relatives) and other examinations, a health plan is co-created, containing goals and strategies for implementation, along with short and long-term follow-up.

My memory says we were introduced to the idea of patient-centered care in the 1970s as a progressive label to contrast with the perception that the mainstream model at that time was physician-centered care. This gave way to the idea of patient and family-centered care as it became clear that caregivers serve a whole family and not just the illness in one individual. Finally, it was realized that the staff deserve attention as they deal with stress and their complex work assignments, so the term appropriately became person-centered. Interest in the concept is active in each of our countries and cultures.

Wijk indicated that her university in Sweden has a research center for person-centered care that has collected data on patient outcomes after implementing person-centered care in various health care contexts. Interestingly, but not surprisingly, although there is ample evidence of better results, for example, with improved pain reduction, quality of life and self-efficacy, the greatest management response occurred first in relation to reduced cost of care and shorter length of stay.

Person-Centered Environments

Wijk suggested that we needed to understand what sort of physical environment is needed to support the delivery of person-centered care. She feels that the possibility of choice, privacy, normality, and flexibility as seen from a patient’s perspective ought to be a design imperative. There is good information on the role of nature views and nature-related elements in health settings that may be relevant to person-centered environments.

In a serious research study of person-centered environments, one would wish to identify the relationship between design features or characteristics of the environment and measurable clinical outcomes. The characteristics of the patients, the caregivers, and the organizational culture would be moderators influencing the outcomes (Figure 1).

In a serious research study of person-centered environments, one would wish to identify the relationship between design features or characteristics of the environment and measurable clinical outcomes .

Figure 1.

Conceptual framework.

I regularly show my students how the designed environment influences human behavior, performance, and human interactions. This leads to the important implication that well-designed facilities can contribute to health and healing. At this point, I always add a caveat; although the environment contributes to health and healing I don’t believe it is more important than a surgical intervention, a pharmacological intervention, or even the caring touch of a nurse. But since design can contribute positively to health and healing, and can support the delivery of surgery, pharmacy, and nurse empathy, I feel we have an obligation to make every effort for the places we design to serve the needs of patients or clients and their families.

Proper protocols and extreme caution can produce good results, but what characteristics make the environment of care a better experience for patients and their families and more functional and effective for the caregivers? There is a saying: “You can practice good medicine in a tent,” as is often done by rescue or relief workers and in wartime. Florence Nightingale improved patient mortality during the Crimean War while working in tents and some COVID-19 surge facilities are located in tents. How shall we design better environments for caregiving?

Nirit Pilosof, a healthcare architect from Israel and currently a researcher at the University of Cambridge, observed that standardization of environmental features seems to guide design of the typical hospital room. Pilosof feels that clinicians, especially physicians, want consistency in room layout and equipment. There are many projects in the United States that have standardized by adopting the so-called same-handed room, which features identical orientation for every room and avoids the usual mirrored back-to-back designs that share plumbing walls along with electric service and medical gasses. The push for consistency and standardization in design for health has come from an awareness of standardization in high-reliability fields such as aviation or the nuclear industry.

Pilosof mentioned instances when the staff did not like that the patient changed the temperature, lighting, or bed position/height. She referred to current COVID-19 units, which have undergone transitions in character and an increased presence of technology, as being staff-centered rather than patient-centered, focusing on the safety and health of the staff. She believes there is constant tension between the desires of patients and staff.

Pilosof offered the observation that our discussion appeared to revolve around a range of scales that might be used to help describe the characteristics of each project. These and other scales can help observers arrive at agreement about qualitative features that are otherwise difficult to quantify (Figure 2).

Figure 2.

Continuums of design.

Person-Centered Caregiving

Johan van der Zwart, a Dutch architect and postdoctoral researcher at the NTNU Norwegian University of Science & Technology in Trondheim who was a guest editor for HERD 14.1, related “the act of caregiving” to the work of Florence Nightingale and her descriptions of the act of nursing. Nightingale wrote both about the act of nursing and the environment in which it best occurred. Van der Zwart wonders whether the divide between utilitarian (or institutional) caregiving and person-centered caregiving might be based on either or both the organization of care or the healthcare professional’s personal and professional beliefs that determine where it lands on this scale. His interdisciplinary students, when asked to consider the impact of architecture and health under the coronavirus noticed that society’s structure has been exposed, as when people now meet and interact while shopping instead of utilizing the full range of places where they previously met others.

Some in the group, including me, seemed to feel that the highest importance belonged to the caregiver role. A skilled, empathetic, compassionate caregiver, we felt, could often overcome any negative aspects of the physical environment. Without getting specific, this suggested a classic 2 × 2 grid with the room types on one axis and the staff types on the other.

I suppose there must be a range or continuum upon which the characteristics of traditional caregivers and person-centered caregivers might be observed. No one is likely to be fully and consistently one or the other, but individuals will have some mix of the relevant characteristics. Perhaps we need a definition or at least a commonly accepted sense of what it means. Would the definition be different in different countries or cultures? Figure 3 above offers some preliminary thinking on the concept.

Figure 3.

Analysis matrix.

Interaction of Caregivers and the Environment

It occurred to me that the characteristics of the environments, or rooms in which care is delivered (as in Figure 2), and the characteristics of the caregivers (as in Figure 4) could be arranged in a standard grid or simple matrix (as in Figure 3). During our first call, I had quickly jumped to the conclusion that such a grid could be used in many other situations scenario of the Swedish studies of patient-centered environments. We exchanged draft versions of the matrix by email. Many studies in many locations, using different patient or client populations could be performed to explore outcomes. Such a grid or matrix could be used to assess acute care or critical care, behavioral health or specialty services.

Figure 4.

Caregiving ranges.

The grid in Figure 3 illustrates my personal bias, with a plus (+) sign for the person-centered room or non-traditional caregiver, and a minus (−) sign for the traditional room or caregiver. As a result, the nontraditional room and caregiver receive a double plus (++) in the grid and the traditional room and caregiver receive a double minus (− −). I am of course a longtime advocate of a patient- or person-centered care model. To reduce my personal bias and prejudgement, each element in the grid needed to be defined.

Traditional Room Design

My admittedly biased assumption is that the traditional room is plain, utilitarian, and usually more institutional in character with a relatively limited number of choices for the patient or client. This means less control over temperature or lighting, fewer choices for distraction, and limited accommodation or amenities for family members.

Person-Centered Room Design

I am imagining a room that is less institutional in character and that offers the patient or client greater choices and more personal control. This can mean greater control over temperature and lighting, more choices for distraction such as information, communication and entertainment systems, artwork, and accommodation for family members. Views of nature are highly desired.

Möhn, whose work is largely in the area of behavioral health, added the need to accommodate physical activities as we know its positive effect on the healing process. Multifunctional furniture to serve clients or family members, such as benches or other aids to activity functions could be designed in a fresh style to stimulate activities and could also be used as sitting elements.

Traditional Caregiver

I am assuming the traditional caregiver in this grid is someone with long experience and an unintended tendency to resist change. This person prefers a course of care that proceeds without delays and is less likely to want to interact with family members. This person does not believe any extra attention paid to patient-centered activities, such as increasing individual choices, improves the clinical outcome.

Person-Centered Caregiver

I am imagining the caregiver who believes in a supportive person-centered care model is open to trying new things and is likely to form a good relationship to the patient or client and the family. This person is likely to believe that the patient or client who is comfortable and well-informed about their course of care while feeling in control of their personal situation has reduced stress and a better potential to meet their individual goals for health, healing, or recovery. Möhn declared that the key is to fully understand and know the needs of the client. Otherwise, description of the client or patient’s needs is just an interpretation provided by the caregiver and wouldn’t lead to the right results.

The importance of context for patient- or person-centered care was pointed out by van der Zwart. The situation in outpatient care, inpatient care, trauma care, behavioral health, and other specialties may be very different. The length of care ranging from outpatient and short-term to lengthy rehabilitation may also make a difference. Stefan Lundin, a Swedish architect from Gothenburg known for outstanding behavioral health design, remarked that the need for patient-centered care is more important as the length of stay increases. In particular for emergencies, van der Zwart said that when a life is at stake, “we will support any demand from the medical staff.” So, while a person-centered setting may offer amenities, it must always provide best practice infection prevention, life support technologies, support clinical observation, and be highly functional for the caregivers.

Between the 2 × 2 grid and Pilosof’s Scales of Design, van der Zwart started to think about the division between physical architectural design (the walls, floors, finishing, layout, position of doors and windows) that is more or less anchored by decisions in the design process, and social architectural design, the rooms and places whose character is determined by the way they are used by people, and which is much more related to/changed by/altered through how exactly in practice the “act of caregiving” is done. According to van der Zwart, two of the Pilosof Scales are more context and setting oriented (long term vs. acute care and regular vs. crisis times), while six are more oriented to social architecture and four are more oriented to physical architecture.

Lundin, who co-authored Architecture as Medicine with a psychiatrist, commented that the model combining a person-centered environment with caregivers open to providing relationship-based care was well suited to psychiatric facilities. He observed that while the caregiver attitude and philosophy play the major role, architects naturally gravitate to working with the physical setting and a desire to produce creative person-centered environments. Lundin asked the group who “owned the room,” the patient or the caregiver? For whom are we designing, and if for both, who has the last word? Lundin recalled that in my work with intensive care unit (ICU) nurses, they often began their shift by arranging the room to suit their preferences. In an e-mail reaction, he offered another question:

Could this reorganization and “staffilization,” be done in a way that does not interfere with what is supposed to be regarded as “the patient room standard design?” This standard design/appearance is often requested in order to increase patient safety, as equipment and other objects would always be found in the same physical position and “routines and protocols” could be met. But if the “staffilization” could be accomplished without negative interference on the standard-setting—if there are different and equally okay ways to do an activity—is there anything wrong in such an action? No, not really, as long as it does not interfere with the patients’ demands.

Möhn works with individual spaces that require lengthy interviews and observations to develop a highly personal and individual design suited precisely to the client. These projects are totally customized to the individual occupant. Pilosof asked whether a room could be personalized in addition to being standardized. The discussion explored how a room might be standardized as a flexible or adaptable container that allows personalization. We have examples of art carts that offer patients a choice of posters, photos, or paintings to alter a room’s décor. Entertainment systems can offer soothing music and images of nature that change the ambiance. Some designers are experimenting with theatrical LED lighting to allow patients to choose the color of the footwall.

Standardization of hotel rooms as a comparison to patient rooms, was mentioned by van der Zwart, suggesting that well-designed hotels give the customer a sense of comfort, and yet each hotel seems to have an individual décor. Perhaps this raises the question of what aspects of room design can safely be standardized and what aspects should be available for personalization. In my own doctoral work, I observed nurses in ICUs who dealt differently with the fixed objects in a room and the mobile objects or equipment within the room.

Virtual Caregiving

Pilosof offered an insight from the contemporary need to have more virtual care visits by telemedicine. The pandemic has caused this to be an issue for many cultures. It seems to Pilosof that clinicians in Israel were learning more about their patients because of seeing them in their home environments. Clinicians learned about the behavior of patients, along with a better understanding of their home and family situation. I remarked that being cared for at home might be the ultimate in “homelike” accommodations for the ill. Many designers in North America have expressed a desire to create non-institutional settings that might be homelike, and the counter position was always: Whose home? For some cultures, caring for patients in their own homes may be an excellent way to reduce stress and anxiety.

Pilosof raised another issue related to person-centered care in the time of COVID. No matter what the philosophy or intention of the organization and caregivers toward person-centered care, the requirements of providing intensive care for critically ill coronavirus patients interferes. Staff members are frequently completely contained inside protective suits and masks that alter their perceived humanity and limit normal interactions, and patients can be totally separated from family, communicating only by tablet or social media. The settings for care are often highly technical and lack any sort of environmental amenity. COVID requirements are seriously challenging any intention to deliver person-centered care.

No matter what the philosophy or intention of the organization and caregivers toward person-centered care, the requirements of providing intensive care for critically ill coronavirus patients interferes. Staff members are frequently completely contained inside protective suits and masks that alter their perceived humanity and limit normal interactions, and patients can be totally separated from family, communicating only by tablet or social media .

In Pilosof’s view, the crisis has disrupted some of the fundamental conceptions of healthcare services, including patient-centered care, direct physical observation, human connection, and family involvement. Keeping staff safe is an understandable and overriding requirement. The need to protect staff and treat patients remotely has led to new models of remote care that were not previously considered appropriate.

Research on Person-Centered Environments and Care

Möhn made an interesting suggestion about something which could come from these discussions:

As we are a group of multifunctional talents we could try to create a real situation where we could try out and implement all our ideas. We could try to get a research project: two bedrooms in a hospital (maybe in Göteborg) which we could design in exactly the way we have in mind for a future hospital room with a person centered Room Design and person centered Caregiver.

Multiple research studies on different patient or client populations in different cultural situations based on the conceptual framework in Figure 1 could produce valuable insights for the field. There are people in our group with good connections who might find a hospital that could be interested in working on this research project. Some hospitals may already have the makings of a natural experiment because they have two types of rooms which could be described as either more or less person-centered. We know people who might be good in fundraising and such a study might attract foundation grants. We have access to excellent researchers, writers and designers interested in the topic. Perhaps our readers will make suggestions for potential research studies and sites.

Our small group (Figure 5) has made no attempt to draw conclusions. The idea, rather, is to discuss and explore issues that may be common to our work in design for health and to raise questions that may become research topics. On the other hand, our small group is clearly predisposed to support the idea of person-centered care. This kind of cross-cultural dialogue seems to be much more possible as we have responded to the pandemic and learned to better communicate in the virtual domain. I am certainly eager for the next call and the next conversation.

Figure 5.

Zoom screenshot. Participants: Hamilton, Möhn, Lundin, Pilosof, Wijk, van der Zwart

Connect With Your Friends

Since we have so enjoyed communicating productively with each other, bringing together ideas that spring from Sweden, Norway, Israel, the United States, and the Netherlands, perhaps you can be inspired to contact your own friends and colleagues, wherever they are, to start a meaningful conversation. My colleagues and I encourage you to seek out others for initiating a dialogue about exploring topics important to you.

D. Kirk Hamilton, PhD, FAIA, FACHA, EDAC Co-Editor