Class is in session…

wheelchairThe first thing a good architect has to have is the ability to put themselves in other people’s shoes, to value both the physical and emotional needs of the people who’ll experience a building or space. That’s me, I thought. With a primary career specialty in healthcare design, I saw myself as an incredibly sensitive and empathetic individual and architect. Before engaging on a unique clinical assignment, I often spent nights in facilities, sometimes pretending to be a patient, badly in need of rest, other times shadowing staff to see what challenges they faced and what obstacles were in their way. When it came to folks with disabilities, I figured the ADA and the various accessibility codes told me what they needed, so that part was covered.

Beyond this overinflated self image as an uber-sensitive architect, I also saw myself someone who could defy the clock. I went about meticulously tallying my weekly running logs and planning epic mountainous hikes, oblivious to the fact that I was already half a century into my life. If aging happened to me, it would be graceful. Then eight years ago, during a long solo hike in the mountains, something didn’t feel quite right. Out of the blue, I was diagnosed with a rare degenerative neuromuscular disease. I found myself in a specialty waiting room at Mass General surrounded by people who struggled to walk and talk. I was about to learn real lessons in accommodating human needs that I couldn’t have begun to comprehend before. I felt like I was in a classroom on day one of a course that I was completely unequipped for, and it scared the hell out of me. 

Occasionally we do experience sudden epiphanies. That miraculous moment when something clicks in our brain and a previously blurry understanding suddenly comes into focus. Well, I can’t say that happened for me when it came to accessibility. There was no epiphany, no eureka moment where things became clear. It wouldn’t be a crash course in Disability 101. I’d learn these lessons little by little, kind of like learning a foreign language late in life. Simple things came much harder than I could have expected. Over a few years I went from athletic, to clumsy, then to swallowing my pride and getting a walker and finally to needing a wheelchair. Each phase brought new lessons along with the physical and emotional bruises. Early on I subtly looked for street signs or parking meters to hold before I stepped off a curb. When searching for handholds wasn’t enough, I reluctantly bought a rolling walker. I discovered things I never imaged, such as bracing yourself when reaching for a door, knowing that someone bursting through from the other side could be catastrophic. I fought doors like Don Quixote battled windmills. What appeared inconsequential to others became an epic struggle for me.

Wheelchair lessons

Next came my wheelchair lessons. The first thing I noticed from a wheelchair is that there are two basic types of people: the ones that give you a wide berth, avoiding the slightest eye contact, and the ones that go out of their way to help. Initially I welcomed the first type but once I got my self-consciousness in check, I greatly appreciated the later type. For example, it turns out that most of the things on my grocery list are located on the top shelf. I have a choice, wait for a Good Samaritan or revert to liking Fruit Loops. As much as we all crave total independence, I’ve come to accept that in some circumstances a helping hand is needed and that the interaction can be gratifying to both parties.

Navigating the world from a sitting position is still something I’m learning. It’s not as easy as I had imagined. Obstacles pop up everywhere and I have to admit the old me was blind to 90% of them. As an architect who relied on the ADA and the other accessibility guides, it’s been eye opening to learn what it means to actually use these features, assuming they weren’t overlooked. I stopped being surprised by the omissions, even at large chain hotels and restaurants. Compliant doesn’t mean easy to use. The tension on a door closer rarely is adjusted properly; chest high bathroom counters make it hard to wash hands but easy to soak shirt sleeves; out-swinging toilet doors without closers are almost impossible to close behind you. That 18” “clear space” requirement on the pull side of the bathroom usually seems like a fine place for someone to place a heavy waste paper receptacle. I’ve learned how a mouse feels in a have-a-heart trap.

Sadly most view accessibility as simply a legal minefield, so fearful a misstep could mean a lawsuit that it creates an “us versus them” mindset. That mindset is reinforced when people perceive the demands waste space, cost more, and are aesthetically compromised, that is to say, ugly. I’m guilty of feeling that way both before and after my disability, but I know we can do better with care, creativity and reasoning.

Learning is a lifelong experience and we don’t always get to choose what class we’ll have to take. But we can choose whether we’re going to embrace what we’ve learned and use it. Unlike college calculus, I can see a purpose in what I’m learning, especially as an architect. I’m catching on to what accessibility and inclusive environments are all about. The biggest lesson I’ve learned so far is that we can all do better.

Todd Hanson, AIA leads JSA's Healthcare Studio. He has been integral in establishing JSA's reputation for innovative programming, design sensitivity and client service.

My family discovers an alternative senior living option

Chuck with baby pamMany baby-boomers help long-distance parents navigate health issues, housing changes and daily care. In my case, my father’s rapid health decline served as a fast-track introduction into the world of skilled nursing and hospice care, Oregon-style. A week in the hospital, a week in a (dad-detested) skilled nursing facility, five additional days in the hospital — suddenly it was time for hospice care and a suggestion to explore residential adult foster care. Adult foster care? Our family was hesitant — it seemed unlikely that adult foster care could compare favorably to the high-level care facilities that are available in medically sophisticated Portland, Oregon. My father required Level 3 care, difficult to locate in recommended facilities.

Working with placement team professionals, my family toured skilled nursing facilities with hospice care. We considered full-time home care to keep dad at home with our mother. These two options were not a good fit for our family.

Next we visited adult foster care homes. I had never heard of adult foster care until my father was in need, but hospital nurses strongly suggested we explore this unique west coast option. Adult foster homes are classified according to approved care levels and by how many Activities of Daily Living (ADL, basic self-care skills) the resident can independently perform. Several home visits later we found an adult foster home that seemed to fit the bill. My mother was comfortable with the home and care givers, and a room was available. Only one Level 3 patient per household is allowed in adult foster care, homes are allowed to care for a maximum of five people. Additional care required by patients (hospice, physical therapy or other special care) is provided by outside nurses with regular visits to these homes, and are contracted separately (usually covered by Medicaid or private health insurance) along with frequent spot checks by the Oregon DHS — Department of Human Services.

The foster care home we chose was newly licensed, with four resident rooms. It is managed by three sisters who have been in the senior care business their entire careers. A close family, their mother was their silent business partner and ran her own adult foster home close by. My father’s room was small with a set of French doors leading to a deck, while another door to the corridor allowed my father to hear household activity. The care-giving sisters were proactive in their approach to care — they offered my father anything they could dream up from the kitchen: lamb stew, cookies and special shakes they concocted. He was no longer eating, but he surprised us by taking bites of things, from popcorn to clementines. I kept a careful watch for his reactions but he never indicated that he wanted to go home, remaining sharp as a tack during our conversations. An outpatient hospice care company provided much of his daily medical care, counseled staff on the administration of pain medications, provided baths, and offered family support.

A shift from traditional institutional care

The passage of the HR3590 Health Care Reform Act will trigger a shift from traditional institutional care to a person-centered model of care. Many nationally respected models, such the Eden Alternative and Wellspring Innovative Solutions, already support person-centered care. This culture change extends to nursing home environments, encouraging individualized care delivery systems for better clinical success.

The Centers for Medicare & Medicaid Services (CMS) has proposed revisions updating the federal requirements that nursing homes must meet in order to participate in Medicare and Medicaid programs. These revised requirements directly affect the design of facilities with Medicare and Medicaid patients, prompting the reform of individualized care requirements. Practical implementation of the 483.75 Quality assurance and performance improvement regulations into a person-focused environment within a skilled nursing or standard nursing facility will require some innovative design solutions. The CMS recently partnered with the Pioneer Network to present a national symposium on culture change, "Creating the home in the nursing home," beginning to bridge the gap between design changes and code issues.

It would be interesting if more states adopted this residential care option. While some families prefer more traditional care facilities, the personal relationship that develops between the caregiver, the patient and the family during this stressful time is very comforting. Although my mother feels lucky to have found this perfect fit for my father, she prefers a more private environment and has begun visiting assisted living communities for herself.

As an architect, my adult foster care experience was a fascinating eye opener in the quest to develop and provide attractive alternatives to traditional care facilities. For my family, adult foster care provided a warm and personal alternative to traditional end-of-life care. For my father, it meant a quiet and peaceful transition for his last few weeks, allowing him the dignity he deserved.

Pictured above with her father, Pamela Breyer, AIA is an architect with JSA Inc in Portsmouth, NH. She specializes in environments for senior living.

Read more about adult foster care and long-term care options:
Adult Foster Care Homes
A Guide to Oregon Adult Foster Homes
Culture Change and Resident Centered Care in Nursing Homes
Medicare and Medicaid Programs; Reform of Requirements for Long-Term Care Facilities
Ten Senior Living Design Innovations

Designer as patient: My lessons from the chair

feetWhen I first began working on healthcare projects, I knew that I wanted to create environments that would benefit all users: staff, patients, and families. I didn't realize that even the smallest design decision had a direct impact on patient’s state of mind and well being. I gained a firsthand perspective on how critical good design can be for the patient in 2012 when I was diagnosed with Stage Four Hodgkin's Lymphoma. At the same time that I was designing an imaging suite for a client, I was suddenly playing the role of the patient, being poked, prodded, imaged and injected. From that moment on, the term "patient centered care" was real and I knew it would always be with me and my work.

I used my treatment time as an opportunity to learn and observe. I questioned the doctors and nurses about the spaces they worked in. I began to pay attention to how the environment made me feel as I was working to heal. While waiting in holding rooms prior to procedures, I noticed how disconcerting it could be to hear other procedures nearby: the sound of a cross-corridor door opening and closing in a busy hallway and the clicking of heels on a VCT floor. Could the holding room be on a quieter corridor? Could the flooring be a different material? Could the STC rating of the walls be improved upon? The answers to these questions was, ‘yes.’

I'm sharing my stories from the patient’s chair in hopes of opening the eyes of those who have not had the opportunity to see this perspective. As designers we need to consider the patient's priorities as well as those of staff and administrators. After all, it is the patients who often choose where they will go for care. Do we really want to be responsible for their bad experience? How can we approach our work and make a positive impact on the patient? Put yourself in the patient’s shoes as you work through the design of healthcare environments.

Lesson #1: Determine the duration of a patient stay and consider what they might like that environment to be

Infusion is a very long process - my four to six hour infusion was short compared to some of my fellow patients. It can take most of a day. Flexibility of seating and privacy can make this experience more bearable. Movable chairs, tables and work surfaces, and room dividers with translucent panels that can be opened and closed can make this flexibility possible. Some patients like to be near others so they can talk, others like quiet, private spaces so they can rest. Think about the family and friends that might be there. Some patients have one companion; others have many. Make room for choice. When you are a cancer patient you have few choices; there are procedures and treatments that simply must be done. It is an incredible gift for a patient to be given the opportunity to make a decision about their treatment environment for the day.

Lesson #2: Consider the location of program. Make it easy to navigate and understand

Accessibility and location of program elements was important to me when I was in treatment. On my infusion days I would be tethered to an IV pole, receiving fluids and chemo throughout my stay. As a result, I would be up hourly, walking alone to the restroom. Chemotherapy can make a patient tired, weak and nauseous. To get up from a recliner keeping IV lines intact and walk is quite a feat. Location of the restroom, and the presence or absence of barriers along the way, is an essential part of making this trip. When available, I asked for an infusion bay near the restroom so I could see when it was free and not have to stand and wait in the hall if it was occupied. Another consideration is the door itself. It can be difficult for a weakened patient to open a heavy door. Closers can be adjusted to make this easier. Think about thresholds. Can patients get their wheeled IV pole over the threshold transition between flooring materials? How far down the hall is the restroom and is the pathway a pleasant experience with artwork, or does it pass by back-of-house areas? Is there an alcove with a bench for resting along the way? This should be a quick, precise path that is barrier free and visible in case the patient needs assistance. Clear sight lines from patient infusion bays and areas like the restroom, nurses, and nourishment areas allow a patient to easily spot what they might need and as an effect, feel better about their experience.

Lesson #3: Let there be light and let it be controlled by the patient

I learned that natural light had a calming effect on me, affirming the need for access to windows, light, and the outside world. I watched the street activity or embraced views of the sky. Treatment spaces should have the ability to allow or block daylight, allowing the patient to control that light, making the space work for their needs at the moment. When I was in center-core spaces without daylight, it was harder to not feel anxious and time passed more slowly. There were occasions when it felt like they stuck me in a former broom closet. “Who designed these spaces,” I wondered? Were they just after-thoughts? Seating choices, dimmable lighting, accessibility to family and friends, and art work on the walls or ceiling can help keep patients calm and more comfortable in daylight-less spaces.

These are a few of many lessons I learned. I'd encourage others to take a less hands-on approach than I did: shadow within the facility you are going to renovate, or for new construction, spend time in the existing facility. If the client has a patient and family advisory committee, incorporate it into the design process. Advisory groups offer a unique perspective as you work with your client and their staff to create an environment that takes all views into account.

Now that I am three years in remission, all this knowledge I have gained, positive and negative, has inspired and educated me on how the built environment can affect the healing process. I experienced both therapeutic and dismal spaces throughout my journey and it has changed my outlook and design process for the better.

Christine Rancourt, EDAC, LEED AP is an experienced architectural designer with a focus on Healthcare and Senior Living environments. She joined JSA in 2007.

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