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How word clouds offer solace to family members as a loved one dies

How word clouds offer solace to family members as a loved one dies

After Daryl Terry was admitted to hospital last October for a kidney infection, the 80-year-old’s condition deteriorated quickly. She was soon moved to the intensive care unit at St. Joseph’s Hospital in Hamilton, Ont.

With a poor prognosis, it seemed she would most likely die in the ICU.

It all came as a shock to family and friends, says her daughter, Barbara Terry, and became particularly difficult when the once-vivacious Daryl lost consciousness and was unable to respond.

But what came next was a surprise of a different kind for the family.

Medical staff gave the family the opportunity to participate in a project created by a McMaster University doctor that aims to humanize the grieving process for families and their health-care providers.

The Word Cloud Project helps families create collages of words and memories describing their dying family member.

“A few days before my mother passed away, a doctor came in to ask if we wanted to create a word cloud. The team showed us samples of previous word clouds, and I thought: ‘What a nice memento,’ ” Terry said.

The Word Cloud Project emphasizes storytelling and engagement between the health-care provider and the patient.

Connections with loved ones

The Word Cloud project was outlined in a recent paper in the British Medical Journal. In that paper, families who took part in the project describe how creating a word cloud improved connections with the loved one — even after death — by helping the family reflect on the unique characteristics of the dying relative.

The technique of eliciting words was also compared to a form of grief therapy.

Terry believes the word cloud helped members of her family better process her mother’s death.

“It was a sad time, as my mother had such an impact on those around her, but while we were discussing the word cloud, there were laughs as well as tears as we shared these memories and unique moments,” Terry said.

Daryl enjoyed Coca-Cola, was known for her vibrant red hair and was called “Mrs. T” by many who knew her. As such, “Coca-Cola,” “Red” and “Mrs. T” made it onto the word cloud, as did many other descriptions.

Terry soon realized that her word cloud would take on a much bigger role than just being a keepsake.

“What surprised me most was that we ended up making lots of copies of it and even placed it on the casket during my mother’s visitation, which really brought another unique element to the service,” Terry said.

The Three Wishes Project, the umbrella initiative that includes the Word Cloud Project, was created in January 2013 and is the brainchild of Dr. Deborah Cook.

Cook, a Hamilton-based ICU physician and professor of medicine at McMaster University, was inspired to create the project as a unique way to help families process the death of a loved one — something she has seen time and time again during her 25 years of practice.

“I’ve always had a passion in clinical practice for end-of-life care, and I really wanted to make a difference. I had done some research on end-of-life care in ICU and felt there was something missing today, which is the humanism in medicine,” Cook says.

Helping families

Through the project, a doctor or nurse elicits at least three wishes from patients, family members or other health providers caring for those patients.

The wishes are classified into five categories: humanizing the environment, tributes, family reconnections, observances and paying it forward. The word cloud falls under several of those categories.

More than 42 per cent of patients and families who took part in the broader Three Wishes Project from January 2013 to November 2014 chose the word cloud as one of their wishes.

Meredith Vanstone, co-author on the BMJ study of the project and an assistant professor in the department of health research methods, evidence and impact at McMaster, believes the Word Cloud Project can also help prevent burnout among health-care providers in the ICU.

“Witnessing a patient die in the ICU can be a difficult experience for health-care providers, too…. It’s a specialty known to have lots of burnout, which is why finding a way to look at the impact of this project on clinicians, which we did in this project, can be important,” Vanstone says.

Julie DeVries, one of the registered nurses who took care of Daryl during her last days of life, had recently moved from working on a general ward to the ICU.

“The word cloud is my favourite part of [the Three Wishes Project], and to see the impact on the Terry family was remarkable,” she said.

“It really changes the atmosphere of the room, and as someone who was used to working on a ward where I knew my patients, it’s made a difference,” she says. “The ICU can feel more mechanical as many of our patients are unconscious. The word cloud added that human element so I could feel like I knew them as a person.”

Effective communication

Cook believes that initiatives like the word cloud can help a new generation of physicians communicate effectively with dying patients and their families.

Her research has shown that trainees value approaches that humanize the process of dying. In a study about the broader Three Wishes Project, she found that the project reframes death and provides a unique experience with end-of-life care.

A lot of people have said it reminds them of why they went into health care and that it re-engages the human aspect of medicine, which is often forgotten in the data-driven, fast-paced, technology-focused hospital setting,” Cook says.

Research indicates that most medical residents have lacked adequate training in end-of-life care.

Dr. Paul Kalanithi, a Stanford University neurosurgeon who died of lung cancer at age 37, wrote a book, When Breath Becomes Air, that was published posthumously and explored how a physician understands death through his own reflective experience.

Dr. Lucy Kalanithi, an internal medicine doctor at Stanford, says the way medical trainees are taught about end-of-life care is changing from purely classroom learning to humanistic learning at the bedside. (Stanford Med X 2016)

His wife, Dr. Lucy Kalanithi, an internal medicine doctor at Stanford, says the way medical trainees are taught about end-of-life care is undergoing a shift from purely classroom learning to humanistic learning at the bedside, and that approaches like the word cloud play a key role for patients, their families and providers — including medical trainees.

“There is so much about how medical students and trainees learn about death that can be revisited,” she says.

“For Paul, writing was a big part of how he came to terms with his own death. It also played a huge role in how I processed the end of his life, and because of [his reflections], his health providers came to know him in a different way — even after his death.”

Growing interest

The Three Wishes Project in general, and the Word Cloud Project specifically, have since expanded to include Vancouver General Hospital and St. Michael’s Hospital in Toronto.

Cook has received other expressions of interest and inquiries from hospitals across North America, and hopes to expand the initiative throughout Canada.

Barbara Terry is pleased to hear of that potential growth.

Six months after her mother’s death, Daryl’s word cloud hangs prominently in Terry’s dining room in downtown Hamilton. She hopes other families can benefit in the same way the project has helped her family process the end of Daryl’s life.

“Though I initially thought it was meant to be a nice keepsake, I now see how it was more than that,” she says.

“It was a comfortable and naturally non-intrusive way to share memories and … strengthen those memories even as she was no longer with us.”

**Originally published on CBC.ca**

Interview Series: Terri Peters

Interview Series: Terri Peters

Terri Peters is an architect and researcher whose interdisciplinary work maps new trajectories of ecological design through contemporary practice, academic research and pop culture. She is an expert in sustainable housing and her research focuses on the architectural and social implications of the built environment, with a focus on more holistic qualitative parameters and wellbeing. She has published more than 20 peer reviewed journal and conference papers on sustainable housing and the impact and evaluation of daylight in homes. She is the editor of “Design for Health: Sustainable Approaches to Therapeutic Architecture” Architectural Design, 2017 and author of “Computing the Environment: Digital Design Tools for the Simulation and Visualisation of Sustainable Architecture” John Wiley and Sons 2018 which looks at how environmental data can be feedback into design process. She has a global perspective, having lived and worked in Vancouver, Tokyo, Paris, and London, and Copenhagen which was her adopted home for seven years. After 12 years abroad she is currently back in her native Canada, as an Assistant Professor at Ryerson University investigating the intersections of building science, environmental design, and wellbeing.

1.What prompted you to focus on healthcare architecture/design?

During my PhD work, which was focused on social housing I realized that the aspect of ‘people’ in that housing was missing, specifically the social impact of buildings. We know the buildings we spend time in, and our surroundings, greatly impact our wellbeing, but how does this become part of how we work? We need to be able to back up our observations and claims as designers and I think the new-ish movement towards evidence-based design, where design decisions are based on more than a designer’s intuition and experience, but also on results and interpretations of scientific evidence, can help improve design.

On a personal note, growing up in Canada and then living in bigger cities like London, where I did my professional degrees, and then in Copenhagen where I did my PhD, these places can be seen as quite dark, dreary places but I loved them. I always say maybe this is why I study daylight, because I appreciate every drop of it! In Copenhagen our apartments had lots of natural light and natural ventilation, it really shaped my thinking of how positive and life affirming a home can be. There’s this concept in Danish of hygge, or contentment, a cosy feeling. Another concept in Swedish is lagom which means something like “just enough is enough.” these are important concept in life to me and I lived and experienced them in my time in Denmark and they continue with me now.

So with all of that together, I realized that if we designed spaces in hospitals and other settings to be intentionally mood enhancing, that could make us all feel better.

2.Why is design important to our well-being?

When we design a building, we know that the decisions we make, however small, impact the moods, ideas and wellbeing of people using the spaces. Prioritizing daylight, fresh air, variety of spaces and environments with views to nature are some of the ways we address this depending on numerous other variables like site and program. We know that these decisions about building form, materials, adjacencies and sequence of spaces, and other variables change our perceptions of spaces and places and help shape our interactions with others.

Design, simply put, impacts how we feel, and not just in health care environments, but in our day to day experience in our homes and where we work. According to the World Health Organization, depression is the greatest cause of disability worldwide, and architects have a role to play in making spaces that do more than satisfy program, budget and site, but that make us feel better. In architecture schools, students learn about building performance and aspects of sustainable design, but rarely are methods, metrics or examples of health promotion or spaces that encourage positive social interactions explored in any depth. There is a wealth of knowledge in allied fields such as environmental psychology, and published studies in areas such as public health and sociology that can be tapped into to enrich the architecture curriculum. The increased focus in schools on environmental performance of buildings must be paired with understanding trade-offs and co-benefits for human performance and wellbeing – after all, buildings are for people.

3.You had an interesting personal brush with the healthcare system in two different countries. What was that like?

I had my two children in Copenhagen at Rigshospitalet, the Royal Hospital. It was built in the 1970s, but had windows that open, large rooms, and lots of daylight that enters into the lobby and patient rooms. I am really sensitive to my environment and I found that the quality of that room impacted my mood and experience.

And it was a major contrast with being in a Canadian hospital which wasn’t designed with these well-being components in mind. I broke my elbow last winter and was forced to wait in a place that had a low ceiling, was crowded, no fresh air. I actually felt sicker! And to top it off it was hard to find where I needed to go – I spent a lot of unnecessary time just navigating: it wasn’t designed with ease. In Denmark, the culture is built around design. The way people speak about it and appreciate it is really unique.

4.How did this experience impact your work as an architect and architecture professor now?

I have the challenge of teaching 1st year students what sustainability is, when often the work-life balance of many architecture students is poor. We hear that many of them are very stressed and finding it hard to thrive. We often discuss the power of building design as health promotion tools.

Architecture is unique in that you experience it whether you want to or not: the impact the buildings have on us is so extreme. When it comes to environmental psychology, which links to designing for health, we know that people have a natural inclination towards nature, whether it’s the savannah or long views. The

biophilia hypothesis (biophilic design) specifically describes this affinity to nature, daylight, natural materials.

Salutogenic design is another school of thought, which keeps stress reduction at the core. Earlier this year I became “WELL® Certified,” which is a new modality that evaluates qualitative and quantitative biophilia as it relates to health promotion. They measure things that are really exciting, because it’s centered around how people respond to being in a building. There’s a huge emphasis on daylight and nutrition, fitness, and well-being. For instance, they measure daylight differently. Traditionally in architecture we usually measure how much of the building’s floorplate is well lit without needing to turn on the light, its called spatial daylight autonomy and it means that area doesn’t need artificial light 50% of the time. The idea is related to productivity. The Well® Standard measures “equivalent melanopic lux,” which is a fancy way of describing the impact of light on the physiology of body, so for instance the impact on alertness, and sleep.

In my courses I describe a concept I coined called “superarchitecture,” which means buildings that do more than minimize the impact on the environment but that exploit and maximize the synergies and benefits to people: everything from building strategies like green roofs, daylight, fresh air and natural ventilation, shading where appropriate, outdoor spaces all these strategies that we know improve the environmental performance but that really also benefit our quality of life in tangible ways.

5.What does thriving mean to you?

Thriving is having time and energy to purposefully devote yourself to what you want to do. Technology can play a role in that, not only in making us feel more connected to each other, but by helping us make better decisions about what we want to do. It also involves how our environments help bolster our ‘emergency reserves’ to handle the unexpected, a protective buffer in other words. Last, when I think of thriving I think of resilience. There’s an emerging interest in architectural research and practice around building resilience and passive survivability. Much of how we think of the resilience of buildings may be applied to people as well. Daylight and views to the outside are big ones – we need these to feel at ease and to have the capacity to deal with disturbance and change. The current thinking around building resilience in building science and architecture is too focused on how buildings would survive in extreme weather or in an earthquake – what about us? How can our buildings help us survive and bounce back?

6.What are you most looking forward to with health design in general?

Looking forward to more interdisciplinary studies – for instance working with more healthcare professionals and building partnerships. I’ve been collaborating with psychologists regarding concepts of resilience in architecture and environmental psychology, which is undergoing a resurgence right now. I’m also excited about how we apply data, specifically how we can visualize the results of simulations, and how people can interact with visualizations and change our behavior to do more of what we want to.

I go to lots of industry meetings and workshops to understand what the potentials are with data and how they can benefit people.

Climate Change is Making Us Sick

Climate Change is Making Us Sick

NO MATTER WHAT you think about the causes of climate change, we know the planet is getting warmer. What most of us don’t realize is the impact climate change has on our health, which is why it’s concerning that last week’s UN Climate Change Summit did not identify health as one of the key action areas.

While about 70 percent of Americans believe that climate change is real (and in Canada, where I live, it’s a key issue ahead of the upcoming election), the majority of Americans surveyed do not believe it will harm them personally, according to a recent Yale Climate Opinion Map of public opinion data. In an earlier survey, less than one-third could name an example of climate endangering health. It’s time for a reality-check.

A 2016 Global Change Research Program Report listed seven broad areas in which climate change can affect health: through temperature-related death and illness, air quality, extreme events (such as disasters), vector borne diseases, water-related illness, food safety and nutrition, and mental health. Particular populations – such as low-income Americans, people with chronic medical conditions, Indigenous peoples, and persons with disabilities — may be disproportionately affected, as climate change has a direct impact on worsening every social determinant of health. Hurricane Dorian, which devastated the Bahamas, is yet another reminder that often the poorest communities are hardest hit.

A warmer planet means more potential for death and illnesses related to higher temperatures. It means lower air quality, especially in densely populated areas. Mosquitoes, ticks, and other carriers of infectious diseases can cover a wider geographic range and for a longer span of the year.

Let’s take Lyme disease: due to global warming, the ticks that carry Lyme are appearing in many more states, notably in the Midwest and in much of Canada. Other vector borne diseases are also likely to increase, though, as one researcher pointed out, the exact impact is unclear without further research.

Global warming also raises the chances of suffering heat stroke and heat stress, both risk multipliers for heart attacks. Asthma sufferers experience worse symptoms from the additional carbon dioxide in the atmosphere as well as dust and other particulate matter.

Air pollution currently causes up to 7 million premature deaths, according to the World Health Organization, and millions more visits to hospitals: One study points to the increase in amounts of near surface ozone as our planet warms as the cause. This issue was highlighted by the WHO at the UN Youth Climate Summit through immersive experiences in “air pollution pods.

And those of us who enjoy seafood are at risk of neurotoxin exposure, due to increases in ocean algae blooms caused by warming temperatures. One study found that the toxic “domoic acid” increased as sea conditions became warmer.

Pregnant women are also at risk. In 2017, an extensive review of previous research on maternal health and climate change found that there are significant connections between extremes in temperatures and premature birth, low birthweight, and stillbirth.

We know that the US is one of the most sleep-deprived nations in the world, and a landmark paper has even linked warm temperatures related to climate change to insufficient sleep among those surveyed.

Lastly, we can’t forget the toll that climate change takes on mental health. The American Psychological Association summarized the effects in an extensive report, linking climate change disasters such as droughts and flooding to increased incidence of posttraumatic stress disorder and depression. And they found that worry about global warming can increase anxiety and depression, as well as substance abuse. This can be especially the case in places that have faced an environmental disaster.

Globally, no one is untouched. The WHO compiled a comprehensive set of resources that detail country-specific ways in which climate change affects human health. It estimates that between the years 2030 and 2050, 250,0000 additional deaths globally could be related to climate change, costing billions. The WHO hosted the first humanitarian conference on health and climate change in April.

In a 2017 article for the New England Journal of Medicine, the authors suggest a few ways in which doctors and patients can combat the effect of climate change on human health. For one, there is a unique opportunity to advocate for ‘green’ hospital design and eating less meat (which may also have health benefits, and have an impact on greenhouse gas emissions).

Earlier this summer, over 70 prominent medical organizations, including the American Academy of Pediatrics and the American Medical Association, called climate change the “greatest public health challenge of the 21st century,” and published a series of recommendations which include reducing greenhouse gases and improving access to clean water. In late August, the Doctors of British Columbia identified climate change as a major health care issue, which was followed by a similar alarm sounded by the Australian Medical Association.

Yet these calls to action can only go so far. Globally, all of us share the aspiration to obtain the highest level of health and well-being possible, however climate change has made this goal unreachable for many, and poses new challenges that even the best medicine won’t be able to fix. And as with most public health challenges, the most disadvantaged in society face the highest burden of risk. A public health approach values “upstream,” or preventative approaches to health disasters, which is why the WHO’s emphasis on the health impact of climate change matters.

While it’s unclear why it was not a core area identified in this year’s UN Climate Change Summit, weaving the health impact into the discussion will be crucial to setting much needed priorities for change before it’s too late.

**Originally published in the Boston Globe**

Take a Walk in the Woods. Doctor’s Orders.

Take a Walk in the Woods. Doctor’s Orders.

“Forest bathing,” or immersing yourself in nature, is being embraced by doctors and others as a way to combat stress and improve health.

On a damp Saturday morning last August, I joined 10 others in the woods outside Ottawa, Canada, as part of a “forest bathing” session offered by a local wilderness resort.

First we sat in a circle on the leafy ground, each sharing a moment in nature from our childhood that filled us with joy. Next our guide, Kiki, a newly trained forest therapist who insisted we call her by her first name, led us on a mindful — and very slow — walk through the forest.

“What do you hear, smell, see?” Kiki asked, encouraging us to use all five senses to become deeply “immersed” in the experience.

An older woman in the group told us that she was undergoing a difficult and stressful period in her life, and that being among the trees felt “healing.” Others mentioned that the activity reminded them of walks they took as part of Boy Scouts or commented on the sounds: insects, birds, the rustling of leaves. I noticed the bright green acorns that dotted the forest floor, which reminded me of my childhood collection of acorns and chestnuts. Admittedly, I was also worried that the early morning rain was fertile ground for vicious mosquitoes (West Nile!) and ticks (Lyme!).

We ended the two-hour forest walk with a tea ceremony, sipping a concoction of white pine needles steeped in hot water.I left feeling relaxed and more at peace, though with at least two dozen bites from mosquitoes that seemed immune to DEET.

Kiki had been trained according to standards set by the Association of Nature and Forest Therapy, a professional group that has certified more than 300 people across North America to be forest therapy guides, among them psychotherapists, nurses and six M.D.s. The sessions are modeled after the Japanese tradition of shinrin-yoku,or forest bathing.

Over the years, I’ve had physician mentors recommend Richard Louv’s books, “The Nature Principle” and “Last Child in the Woods,” which describe the benefits of time spent in the wilderness, from stimulating creativity to reducing stress. Florence Williams’s best-selling book, “The Nature Fix,” has a chapter dedicated to the benefits of forest therapy. And now, it appears that more North American doctors are starting to incorporate spending time in forests into their practice.

Some small studies, many conducted in Japan and Korea, suggest that spending time in nature, specifically in lush forests, might decrease stress and blood pressure (especially in middle-aged men), improve heart-rate variability and lower cortisol levels while boosting one’s mood. An analysis of studies from 2010 that focused on exercising in nature found improvements in self-esteem, particularly among younger participants. Overall effects on mood were heightened when there was a stream or other body of water nearby.

But other studies have shown mixed results. A cross-sectional study from Korea found no change in blood pressure with forest bathing, and a systematic review from 2010 found that while time in the forest may boost mood and energy, any effects on attention, blood pressure and cortisol may not be statistically significant. Another recent review from Australia underscored the challenges of drawing causal links to disease prevention, with the authors calling for robust randomized controlled trials.

Several theories have been proposed as to why spending time in forests might provide health benefits. Some have suggested that chemicals emitted from trees, so-called phytoncides, have a physiological effect on our stress levels. Others suggest that forest sounds — birds chirping, rustling leaves — have a physiologically calming effect. Yet evidence to support these theories is limited.

On a recent visit to Japan, I met with Dr. Hiroko Ochiai, a surgeon based at Tokyo Medical Center, and her husband, Toshiya Ochiai, who is currently the chief executive of the International Society of Nature and Forest Medicine. Dr. Ochiai is trained in forest therapy and currently conducts most of her sessions with volunteers within a forest in Nagano, about three hours from Tokyo, with the help of a local guide, and plans to offer forest therapy soon at one of Tokyo’s largest hospitals.

“I usually encourage participants to sit or lie down on the forest ground and listen to the sounds,” she says. “The hypersonic natural world can be soothing, and things are always moving even while we are still. It can be very calming.”

Last June the Northside Hospital Cancer Institute in Atlanta began to formally offer forest therapy as part of a pilot project in collaboration with the Chattahoochee Nature Center. Twelve patients with newly diagnosed cancers recently signed up for a session, according to Christy Andrews, the executive director of Cancer Support Community Atlanta.

“It was a four-hour session that seemed to have an impact on the patients,” she said. “I remember one participant telling me afterward that it was a way to ‘steer away from cancer,’ and the group became very cohesive. I think it helped reduce the isolation in a way that’s different from a regular support group.”

Dr. Suzanne Bartlett Hackenmiller, an obstetrician-gynecologist based in Cedar Falls, Iowa, began guiding patients in her practice through the Prairie Woods in Hiawatha Iowa, though she has also led groups in forests around Des Moines. She became a certified guide through the Association of Nature and Forest Therapy three years ago and tries to tailor her offerings based on the group she is leading.

“I generally get a sense of where people are at. For some, it’s best for me to stick to the science, but others may literally want to hug a tree. The traditional tea ceremony at the end might turn some people off, so I’m conscious of that and adjust accordingly,” she says.

In one exercise, she has participants close their eyes as she guides them through experiencing the different senses, imagining feeling their feet growing into the ground like roots of a tree, for instance, listening to nearby sounds and observing how far they may extend, or smelling the air. It’s similar in many ways to a guided meditation.

“I recently held a session where four out of the 20 participants were in wheelchairs, so I found a local park that had plenty of trees and a paved sidewalk so everyone could enjoy it,” she says.

At the University of California, San Francisco, Benioff Children’s Hospital in Oakland, Dr. Nooshin Razani, a pediatric infectious disease doctor and director of the Center for Nature and Health, has offered a similar program for the past four years. The “Shine” program, linked to the East Bay Regional Parks District, offers “park prescriptions,” a movement that is growing in popularity, and aims to improve accessibility to nature for low income children.

One Saturday a month, Dr. Razani leads a group of up to 50 people through a lush forest of redwood trees and lakes on the outskirts of Oakland. The groups consist of patients ranging in age from a few months to 18 years, accompanied by at least one adult family member. A few of her medical colleagues — an orthopedic surgeon and primary care doctor — have also attended, and the Oakland-based pediatrics residency program at the medical centers invites doctors in training to join the group. Shine recently celebrated its 60th park outing.

“The accessibility part is huge for me. Many children don’t have access to green spaces in their community,” Dr. Razani says. “We also have evidence that supports the mental health aspects of spending time in forests, and for the resident doctors who participate, it’s a way to show them how children interact with nature based on the developmental stage. Sometimes the doctors’ need is just as much as the patients’.” In February, Dr. Razani published findings of a randomized trial that found that park visits — regardless of whether they were led by a guide or not — were associated with a decrease in stress three months after the visits.

A few hours after my own forest walk, the woman in our group who had mentioned her stress emailed me to say that she had checked her blood pressure afterward and noticed it was lower than usual. “It would be nice to see if there was a meaningful change from before, if they collected that information,” she wrote.

She had hit on one of the biggest issues around guided forest walks and forest therapy. Is it an evidence-based activity with proven clinical benefits?

The science is still lacking to prove it. But there is some evidence — as well as good old common sense — to suggest that spending time in nature is good for both the mind and body, whether done as a group or alone. It may be something we all need more of.

**Originally published in the New York Times**

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