Stronger Voices, Better Care

Serving the People of Nunavut

The Ottawa Hospital’s

New Campus Series: Volume 2
21st-Century Engagement for a 21st-Century Health-Care Facility

Don Lenihan
Middle Ground Policy Research Inc.

January 2018
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About the Author

Dr. Don Lenihan
President and Chief Executive Officer
Middle Ground Policy Research Inc.

Dr. Don Lenihan is an internationally recognized expert on public engagement, Open Government, and
democracy. He has more than 25 years of experience developing policy through public engagement
processes, as a project leader, writer, speaker, senior government adviser, trainer, and facilitator.
In 2017, Don co-wrote Setting the Stage, Turning the Page,1 a report advising The Ottawa Hospital on
the engagement process to support development of its new campus. Over the years, Don has developed
and led many research and consultation projects involving senior public servants, academics, elected
officials, journalists, and members of the private and voluntary sectors from across the country.

His experience includes leading an expert group process for the United Nations (UN) and the
Organisation for Economic Co-operation and Development (OECD) on public engagement models to
support the post-2015 UN agenda on sustainable development. He also served as Chair of the Open
Government Engagement Team for the Government of Ontario.
Don is the author of numerous articles, studies, and books, and for four years wrote a weekly column for
National Newswatch, Canada’s preeminent political opinion website. His most recent book, Rescuing
Policy: The Case for Public Engagement, is an introduction to the field of public engagement as well as a
sustained argument for the need to rethink the public policy process. He earned his PhD in political
theory from the University of Ottawa.

1See http://www.ottawahospital.on.ca/en/documents/2017/09/setting-stage-turning-page-21st-century-engagement-21st-
century-health-care-facility.pdf
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Contents
Introduction .................................................................................................................................................. 2
Where to Start .............................................................................................................................................. 3
Recognizing the Past ..................................................................................................................................... 4
Building Cultural Competence ...................................................................................................................... 4
Identifying Differences .............................................................................................................................. 5
Family..................................................................................................................................................... 5
Decision-Making .................................................................................................................................... 5
Time ....................................................................................................................................................... 6
Storytelling and Narrative...................................................................................................................... 6
Hierarchy and Deference in Conversation............................................................................................. 6
Food ....................................................................................................................................................... 6
Generational Change ................................................................................................................................ 7
Training Youth as Cultural Navigators....................................................................................................... 8
Navigating the Ottawa Environment ............................................................................................................ 8
Four Principles to Guide Inuit Navigators ................................................................................................. 9
1. Acknowledge Cultural Differences .................................................................................................... 9
2. Help Inuit Find Their Way Around Ottawa ...................................................................................... 10
3. Make Inuit Feel at Home in Ottawa................................................................................................. 10
4. Explain Their Illnesses and Treatment ............................................................................................. 11
Working Together ....................................................................................................................................... 12
Engaging the Stakeholders...................................................................................................................... 12
Telehealth ............................................................................................................................................... 13
Palliative Care ......................................................................................................................................... 14
Enhancing Communications and Information Sharing ........................................................................... 14
Conclusion ................................................................................................................................................... 15

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Introduction

The Territory of Nunavut covers more than 2 million square kilometres. If it were a country, it would
rank 13th in size, after the Democratic Republic of Congo. The climate is harsh. In winter, much of the
land is dark, day and night, and the temperature can plummet to –40°C.

Nunavut is home to about 33,000 people, 84% of whom are Inuit. More than half reside in the eastern
Qikiqtaaluk or Baffin region, with some 10,000 of these in the capital city of Iqaluit. The population is
young – remarkably young: the median age is 21.4 years, and 31.7% are under 15 years of age, with only
3.3% over 65.2

This unlikely mix of a tiny population and huge geography creates major challenges for the health-care
system. For example, there are no oncologists in the territory, so cancer patients must travel thousands
of kilometres to The Ottawa Hospital (TOH) for treatment. The same goes for other key services, such as
complex obstetrical care and dialysis. There were 2,900 visits from Nunavut to TOH last year – about one
for every 10 people in the territory.

Eventually, these medical services will be available in Nunavut. The territory is developing quickly and
new infrastructure is emerging. Qikiqtani General Hospital (QGH), for example, is a state-of-the-art 35-
bed acute-care facility in Iqaluit. Still, full services are some way off.

Turnover of medical staff in Nunavut is very high, which makes it impossible to build permanent teams
of highly qualified specialists. Until the population is big enough to support such teams, travel will
remain the only viable option for patients to receive some services. This presents challenges of its own.

Life in Nunavut is very different from Ottawa. Many Inuit have never seen a high-rise building, ridden a
bus, or been to a shopping mall. Being dispatched to Ottawa for treatment, without family and friends,
can be very stressful. In addition to their illness, patients must deal with the anxiety and loneliness of
separation.

In these circumstances, even small things can make a big difference. Caregivers report that decorating
patients’ rooms with colourful artifacts, such as banners, pictures, and Inuit wall-hangings, can
significantly improve their mood and morale. Serving “country food,” such as raw seal meat or salmon,
can make Ottawa feel more like home.

TOH recognizes the vital role morale plays in healing and is committed to improving conditions through
new approaches to patient-centred care. The timing is no accident. Construction of TOH’s new campus
has recently been approved. It is one of the biggest infrastructure projects in Ottawa’s history and will
take 10 years to complete: five for planning and five for construction.

It also creates a unique opportunity for institutional learning and culture-change. Administrators plan to
use this to make the hospital a leader in a new generation of health-care institutions that are highly
engaged with their patients and fully integrated with the communities they serve.

2 See http://www.statcan.gc.ca/pub/91-215-x/2012000/part-partie2-eng.htm

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This not only means reaching out to the surrounding community in new ways, but also distinguishing
between the different kinds of communities the hospital serves, and recognizing and responding
appropriately to their special needs.

Stronger Voices, Better Care is part of this effort. Our task was to provide TOH with advice on the best
ways to strengthen its relationship with the Inuit communities it serves in Nunavut. Over several
months, we conducted meetings and interviews with members of the Inuit health-care community,
including community spokespersons, health-care stakeholders of all sorts, and TOH officials. This
included three days of interviews in Iqaluit.

Our participants had lots of views on how to improve patients’ experience with the medical system in
Ottawa, from raising cultural awareness among staff to training a new cohort of “system navigators.”
This report organizes their proposals under four main themes:

1. Recognizing the Past

2. Building Cultural Competence
3. Navigating the Ottawa Environment
4. Working Together

These themes are effectively strategic goals that support the vision of the new campus. Their pursuit
involves the creation of an informed, ongoing dialogue between TOH and the patients and
communities of Nunavut. Establishing such a dialogue is, we believe, a critical condition for
strengthening the overall relationship in ways that will significantly improve the care and services for
TOH’s Inuit patients.

Where to Start

If Nunavut were a country, its cancer death rates would be the highest in the world. At 403.4 deaths per
100,000, these rates are nearly twice the national average and by far the highest in Canada.3 Why?

Multiple factors are at work. Certainly, the smoking rate of 80% is one contributor. Poor and
overcrowded housing may be another. We also heard about the role of intergenerational trauma. But
one story stood out from the others.

Dr. Tim Asmis of The Ottawa Hospital Cancer Centre told us about a study he recently co-authored,
which found that only 70% of Nunavut patients with cancer made it to Ottawa for treatment; 30% did
not. The study was inconclusive about the reasons, but the fact that so many cancer patients didn’t get
treatment is striking – and a likely factor in the high mortality rates.4

During our interviews, we heard many stories about Inuit’s distrust of the medical system and their
reluctance to follow up on treatment. We also heard stories of early-stage cancer victims who arrive at
nursing centres with pains, but then describe them in ways that mislead nurses or understate the gravity
of the symptoms. The cancer goes undiagnosed until it is advanced.

3 See http://www.cancer.ca/en/cancer-information/cancer-101/canadian-cancer-statistics-publication/?region=on
3 See http://www.cbc.ca/news/canada/north/some-inuit-may-be-refusing-cancer-treatment-study-indicates-1.3206509

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Situations like these likely factor in to Dr. Asmis’ findings. If Inuit are often reluctant to describe their
condition accurately, or if they are unclear or confused about what a nurse or doctor needs to know,
diagnosis may be difficult. If they distrust the system, they may be less willing to travel to Ottawa for
treatment.

This left us wondering about the overall condition of the doctor-patient relationship. If there were more
open, informed and trusting relationships between patients and their doctors and nurses in Nunavut,
we wondered, would the cancer mortality rates be lower?

Dialogue is now widely recognized as a critical success factor in medical treatment of all kinds. According
to Ontario’s Ministry of Health and Long-Term Care, a so-called patient-centred or patients first
approach puts people and patients at the centre of the system by putting their needs ahead of
everything else.5

At the doctor-patient level, the approach is supported by an ongoing conversation in which the two
parties work together to develop and execute a plan for managing the patient’s health. Patients play a
critical role here. They help the doctor form the plan and provide reports and updates on whether they
are following it and how they are feeling. Establishing such a dialogue requires mutual trust and mutual
understanding on both sides.

When we asked our participants to comment on this, they replied that if trust is a critical condition of
patient-centred treatment, there is much work to be done in Nunavut. This, in turn, led us to ask some
very basic questions about the relationship between these two communities. There was little
disagreement on where to start.

Recognizing the Past

Most of our participants insisted on the need to educate health-care providers on the impact of
“colonial government” on the people of the North. As with other Indigenous Peoples, the experience
has been traumatic, including the sterilization of Inuit women, the forced relocation of whole
communities, the slaughter of thousands of sled dogs, and the experience of residential schools.

These events are seared into the consciousness of Inuit, young and old. They are a defining presence in
their relationship to government authority of all kinds, including the health system. Rebuilding trust and
establishing an open dialogue starts with a clear understanding of the origins of the distrust many Inuit
feel toward health institutions, professionals, and treatment.

Sensitivity training, we were told, is the first step. Our participants were especially clear that such
training must come from Inuit who are experts in the field, not from southerners who have read about
these events. To feel the emotional impact of the story, they said, it must be told by someone who has
lived it. Health professionals need to see the past through the eyes of the victims.

Building Cultural Competence

5 See http://www.health.gov.on.ca/en/ms/ecfa/healthy_change/

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Identifying Differences

At the start of each interview, we explained our goals of raising awareness and creating a conversation
with Inuit patients and community leaders that would help TOH staff accommodate cultural differences.
Ideally, we said, we’d like to create a kind of check-list that staff could use to anticipate where cultural
perspectives might affect the doctor-patient relationship. People nodded approvingly.

Yet, when we asked them to identify such differences, the main reaction was silence – which was as
likely with Inuit participants as others. Everyone, it seems, takes such differences for granted, but when
asked to provide examples, many are at a loss.

Nevertheless, we persisted until we had some examples that our participants agreed on. Along the way,
one person talked to us about similar research that is being done under the title of cultural competence.
This work, he said, goes beyond traditional “awareness-raising.” It starts by identifying cultural
differences, then uses them to build new “navigational skills” that help practitioners provide services in
ways that respect cultural differences.

This aligns well with our own approach. In conducting the interviews, we first tried to identify some of
these cultural differences; then we asked people how this knowledge could be put to work. The idea of
building new navigational skills of different sorts was a recurring theme in their responses. Before
turning to it, let’s consider the list of cultural differences that emerged from our interviews.

Family

Family, we were told, is the cornerstone of Inuit society. Families usually include lots of
extended relatives and even friends. These connections are nurtured and maintained through
frequent gatherings, from community events and feasts to hunting and fishing trips. Family
gatherings can occur in all kinds of places, public and private, and often spontaneously –
especially in times of stress or difficulty, such as illness. Thus, the hospital room of a sick child or
elder may attract a small crowd, which may even spill over into the hallways.

Traveling south for treatment cuts people off from these gatherings and can leave them feeling
like their social foundations have collapsed. The effects can be debilitating, and our participants
urged that more be done to help patients adjust to this loss when they come to Ottawa for
treatment.

Decision-Making

Inuit tend to make decisions in a more communal way than many other Canadians. Consultation
with family members is integral to the process. When there is an issue to be solved, they will
gather to share information and discuss. This kind of reliance on family and friends, we were
told, is basic to the culture. It can also make medical treatment confusing and stressful for
patients. Doctors may ask a litany of questions regarding medical tests, procedures, and
treatments. Where decisions are required, the patient may be at a loss to respond. He or she
may feel the need to connect with family members to seek their advice and support, yet the

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situation forces them to act alone. This not only conflicts with their lived experience, but it also
could compromise their capacity to provide informed consent.

Time

Traditional lifestyles take Inuit onto the land where daily rhythms are very different.
Unsurprisingly, their sense of time, we were told, is also different. This, in turn, can complicate
medical treatment. Telehealth Ontario was discussed often in this context. It requires tight
scheduling, but some service providers found this difficult in the North, especially with older
people. They view time differently, we were told, and are often unresponsive to schedules. Not
that anyone thought Inuit are indifferent to time or disrespectful of others’ time. Rather, their
experience of time has been shaped by natural events, from the migration of animal herds to
changes in the weather. Their temporal markers and/or priorities are therefore different, which
can be a challenge for a medical system that runs by the clock.

Storytelling and Narrative

Southerners often say they find it difficult to follow Inuit thinking. Inuit elders, they say, can take
a long time to make a point – or perhaps they give a response that doesn’t seem to answer the
question. Our participants treated this view as a failure to understand Inuit culture. Inuit are
part of an oral tradition where storytelling is used to convey information in ways that connect it
to their values, customs, and beliefs. The bullet-style list of facts, so typical of southern thinking,
is foreign to Inuit and they aren’t likely to answer questions this way. Indeed, stripping stories
down to facts, we were told, can make them uneasy. They are inclined to answer a question
with a story because it shows how the speaker feels about the information and why it may or
may not be important. If this seems beside the point to a southerner, said one, perhaps they
need to learn to listen differently.

Hierarchy and Deference in Conversation

Given what has been said so far, the issues with doctor-patient communications shouldn’t be
surprising. A range of factors can affect the exchange, from the storytelling style of Inuit
conversation to traumatic memories of residential schools. Cultural protocols around hierarchy
and deference, we were told, add yet another layer of complexity.

For example, the person who answers a question is not always the person to whom it was
asked. The responder may be an uncle, a mayor, an elder, or someone else. This deference to
such a person is usually a sign of respect – though not always.

The important lesson here is that hierarchy and deference play a significant, but subtle role in
Inuit conversation. While Inuit make decisions together, they don’t all have the same voice.
Hierarchies in families and communities are strong, but we must be careful when discerning
how they work.

Food

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There was scarcely an interview where food was not discussed. Traditional food is at the centre
of Inuit social life and culture. Sharing food is a seminal way of connecting with one another.
Being deprived of country food when in Ottawa is more than an inconvenience or an
interruption of their normal patterns. It is a constant reminder of the loss of their social
connectedness and their way of life. Many of our participants called on TOH to ensure a supply
of country food is available in an accessible location – ideally, a spot where members of the Inuit
community can gather to share a meal.

The Language

Finally, there is the language. Some 70% of Nunavummiut identify Inuktitut as their mother
tongue. The language is, we were told, the cultural soil in which these other practices are
rooted. While our participants recognized that many young people today grow up bilingual –
more on this in a moment – they agreed that speaking Inuktitut is a fundamental condition for
the experience of being Inuit and that the vibrancy and health of Inuit cultural practices, from
storytelling to decision-making, rests on the use and mastery of the language.

Generational Change

If participants agreed with our list of cultural differences, they also agreed that rapid cultural change is
underway among youth. Exposure to southern television, movies, music, social media, and so on means
most young people are as steeped in the values and trends of the South as the North. Nunavummiut
describe these young people as bicultural.

The speed and depth of this change varies between communities. Iqaluit, for example, seems to be
changing faster than Pond Inlet. Still, our participants felt the trend is advancing everywhere and that
the next generation of adults will be very different from their parents and grandparents.

For example, most felt that language would be less of a barrier, as many young people today speak
English fluently. In the short-term, people from smaller communities may continue to need translation,
but that will diminish.

There was less clarity on what this shift means for traditional Inuit values and culture. One view was that
belief systems are highly resilient and don’t change quickly, even though circumstances may. In this
case, the underlying values around families and shared decision-making are likely to persist.

Others felt the changes are profound enough that the next generation will be much less concerned with
culture and more focused on issues arising from their environment: the landscape, climate change, the
remoteness of their communities, the size of their population, the issues with a resource-based
economy, and so on.

Some participants reminded us of the distrust arising from intergenerational trauma and insisted that,
whatever changes may unfold, this will not disappear in a generation or two. The sense of trauma is very
real in youth – the rates of suicide, drug use, and unemployment, said one, are evidence.

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Others agreed that times are changing, but pointed to the efforts by youth to reinvigorate the language
and culture. If it is true that young people will be more influenced by trends from the South, they said,
youth also want to keep their language and cultural practices. This is likely to intensify.

If there was a considered view, it seemed to be that key cultural traits will remain intact into the future,
from deep values about family and shared decision-making to the sense of cultural membership that
comes from sharing traditional food or telling stories. The use of Inuktitut may or may not diminish, but
the use of English will grow. And the people of Nunavut will continue to rely on TOH for some of their
key medical services.

Training Youth as Cultural Navigators

While the future is hard to predict at the best of times, two things seem likely here. First, generational
change is real. Second, the fact that 31.7% of Nunavummiut are under 15 years of age and a mere 3.3%
are over 65 suggests that generational change is the most important cultural issue on the horizon – and
that TOH’s plan to establish a long-term conversation with the people of Nunavut should reflect this.

If so, a principal finding from this study is something we barely sensed at the outset: Young people have
a natural endowment – a skillset – that could play a key role in helping TOH lead the next generation
of health-care institutions. If the 21st century calls for hospitals that are highly engaged with their
patients and fully integrated with the communities they serve, these young people are a stepping stone.
They are extremely well-positioned to help TOH respond effectively to the cultural needs of the older
generation of Inuit.

Our participants shared this view. They told us that youth could and should serve as intermediaries or
“cultural navigators” for their elders and several called on TOH to work with the Government of
Nunavut to develop a plan or strategy to engage and train youth for this mission.

Such training, they said, could be achieved in a variety of ways, including courses at Arctic College or
new “apprenticeship” or “mentorship” programs in organizations like the Ottawa Health Services
Network Inc. (OHSNI) or Akausivik Inuit Family Health Team (AIFHT) (see below). One participant told us
of a plan to build a home for elders in Iqaluit. The facility, she said, will require 80 to 100 culturally
aware care workers. Why not hire and train young, bicultural Nunavummiut to fill these jobs, she asked?
They would bring their skills to the job in a way that would quickly institutionalize their cultural
competence. At the same time, they would be preparing the way for a much richer conversation
between themselves and TOH – they would be redefining the doctor-patient relationship for the future.

Navigating the Ottawa Environment

A patient’s stay in Ottawa may be as short as a few days or it may last months, depending on the
treatment. The Ottawa Health Services Network Inc. (OHSNI) is the main agent for planning patient visits
to Ottawa. It provides case management, medical interpretation, and coordination of specialty health-
care services to Inuit patients. It also makes their appointments and provides them with interpretation
services.

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The OHSNI is the principal contact for patients from Nunavut, but it is not the only one. In fact, Ottawa is
home to the largest Inuit population south of the Arctic. About 3,700 Inuit now live here – possibly many
more.6 They are part of an increasingly well-organized and vibrant community, which also serves as a
support system for patients from Nunavut and their families.

For example, the Akausivik Inuit Family Health Team (AIFHT) is the only existing Inuit family health
centre. Along with the special services it offers the Ottawa community, the clinic provides counseling to
patients from Nunavut. It provides a comfortable space where they can discuss their illnesses and
treatment in Inuktitut, at their own speed, and in their own way.

Larga House Baffin is a boarding facility that provides meals and accommodation for patients during
their stay in Ottawa, as well as transportation to and from appointments.

The Ottawa Inuit Children’s Centre runs Ontario’s only Inuit kindergarten, where children play games
with seal bones and caribou legs and are taught in Inuktitut.

Tungasuvvingat Inuit, Ottawa’s Inuit social and community organization, sponsors an array of programs,
including food banks, addictions treatment, church services in Inuktitut, regular community feasts, and
field trips to pick apples and berries.

TOH recognizes the huge value of this community for visitors from Nunavut. A staff member has
recently been designated to help Indigenous Peoples navigate the medical system. Part of her work is to
establish a trusting relationship with patients and their escort/family members from the North. This is
achieved by acknowledging the separation between the patient and their community/culture and
providing experiences that are unique to Ottawa that supports their connection with land and
community. Still, as she was quick to note, much more needs to be done.

Our participants agreed. They suggested various ways to expand and develop this navigational role to
help Inuit patients and their families while in Ottawa. We’ve consolidated their proposals under four
navigational principles that we think should guide service providers at all levels.

Four Principles to Guide Inuit Navigators

1. Acknowledge Cultural Differences

The new campus creates a unique opportunity to recognize and celebrate TOH’s relationship with
the Indigenous Peoples it serves:

 The new building will stand on unceded Algonquin lands. Several people thought the main
entrance should clearly recognize this.

 In addition, participants said the main foyer should somehow express TOH’s commitment to
respect Indigenous Peoples’ unique cultural and linguistic heritage – perhaps even the
cultural differences of peoples around the world.

6 See http://www.cbc.ca/news/canada/ottawa/woefully-inaccurate-inuit-population-ottawa-1.4391742

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 An Inuit carver or sculptor could be engaged to create a welcoming piece for the hospital
grounds, which might be placed near the main entrance, possibly with a seating area nearby
for patients.

 An outside park or healing space could be designed to symbolize the close relationship
between Nunavut and TOH and to show that TOH’s doors are always open to the Inuit
community.

 Nunavut dignitaries and traditional singers could be invited to participate in an inauguration

ceremony to dedicate the sculpture and space as symbols of the importance of the
relationship.

 Plans like these must be made in close consultation with the Inuit and other communities
they depict. If these gestures are to feel authentic, they must embody the spirit of
partnership and service that underwrites TOH’s vision of a 21st-century health facility.

2. Help Inuit Find Their Way Around Ottawa

Much in Ottawa and TOH will be unfamiliar and even intimidating to first-time visitors from
Nunavut, from the Light Rail Transit system to the network of passageways that will connect the
campus. Patients and their families need help finding their way around.

 Accessible brochures or information packages should be available to inform visitors about

the facility and the city around it. Ideally, the material would be highly visual and/or
available in Inuktitut.

 Signs in the hospital should be accessible to Inuit. If signs cannot be in Inuktitut, perhaps
universal symbols or appropriate pictographs could be used.

 An information centre at TOH might allow Inuit patients to post their names and some
contact information so they can connect with one another during their stay.

 More resources should be dedicated to training system navigators who can introduce
patients and their families to the special features of the hospital, and provide advice, help
and contacts in the Ottawa community to make their stay easier. This is a natural role for
bicultural youth from Ottawa and Nunavut.

3. Make Inuit Feel at Home in Ottawa

Larga Baffin has shown how a few simple adornments in a room can help normalize patients’ moods
and increase their comfort during their stay. TOH should develop a “home away from home”
program to help patients feel at home through initiatives like these:

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 Decorate patients’ rooms with Inuit art and other culturally familiar articles.

 Install a fridge for country food in the hospital, create a gathering space around it and
organize meals where patients from the North can gather and socialize.

 Qikiqtani General Hospital allows the use of Inuit knives for food preparation. Perhaps TOH
could provide disposable cutting boards and access to sharp knives for preparing country
food.

 TOH has very few Inuit working as cooks, cleaners, orderlies, and so on – especially given the
size of Ottawa’s Inuit community. Greater effort should be made to recruit Inuit staff –
especially bicultural youth – to help create a more welcoming environment.

 More spaces like the Windocage Community Room could be created and dedicated to
special purposes, such as carving and crafts or preparing country food.

 Child-friendly areas should be designed for different cultural communities and family sizes.

 Fresh air and good air quality are very important to Inuit, especially in the summer. Inuit
overheat easily and suffer from temperatures that are too warm.

 80% of Inuit smoke cigarettes and/or marijuana. A plan is needed for how these activities
will be approached in future in an appropriate and respectful way.

4. Explain Their Illnesses and Treatment

Too many Inuit patients don’t fully understand the nature of their illness and treatment or why they
have been transferred to Ottawa. Language and culture are huge barriers. Some patients barely
understand English; others can’t or won’t or ask the questions they need answered. Engaging
patients in an ongoing conversation about their health and care should be a top priority for service
providers at TOH.

 TOH staff should be trained to recognize and respond to the cultural needs of Inuit in their
care. They should be encouraged to participate in cultural events and programs as part of
this training.

 New methods of explaining illness, treatment, and travel should be explored. For example,
we heard about a project to develop a “What to Expect” video that will inform patients
about what to expect on the journey to Ottawa and how to prepare for it. Another project in
Winnipeg is producing a video on colonoscopies and how to prepare for them. Videos on
other aspects of patient care could be helpful, including some on non-medical topics, such
as activities in Ottawa’s Inuit community.

 Our participants agreed that translation is a vital part of patient care. Some 80% of Inuit
currently rely on it. While OHSNI was applauded for its translation services, most of our

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participants felt that overcoming the cultural barriers requires more of translators than
proficiency in English and Inuktitut.

o Technical skill: Technical language should be broken down, and diagnosis and treatment should
be explained to patients in ways they understand, which means the translators too must
understand the technical points, which likely requires training and, possibly, specialization. (The
Nunavut Tunngavik Inc. (NTI) Inuit employment plan considers keeping translators focused on
one specialization or field to increase their skills and expertise.)

o Cultural competence: Training for translators should include more than technical
competence; it should include cultural competence. For example, they should be trained
in how to deliver bad news in culturally sensitive ways. Currently, this is left to their
discretion. We’ve also seen, for example, that how a question is asked matters, as does
the way an answer is given – and that Inuit and medical professionals often see the
world very differently. Translators need to be skilled intermediaries who can ensure the
questions and the answers connect. This requires both a technical understanding of
medical practices and a high level of cultural competence. The use of bicultural young
people is a promising avenue here. They already have the cultural background and the
technical skills can be acquired through training.

Working Together

Cultural competence starts by acquiring knowledge of the cultural differences that distinguish one
community from another, then asking how to align medical practices and treatment with these
differences. So far in this report, we’ve identified some important aspects of Inuit culture, then
considered how different types of “navigators” can use this knowledge to improve patient care,
especially for Inuit traveling to Ottawa. We’ve also provided four principles to guide these navigators.

In short, our discussion has focused mainly on improving the patient’s experience as he or she moves
through the medical system. But we can also ask how cultural competence might change the design and
delivery of major programs in the system, such as Telehealth or palliative care. Our participants also had
views on this. This final section presents some of their thoughts on how cultural competence might be
applied at the program level.

Engaging the Stakeholders

While many of the proposals so far could be implemented by TOH administrators, say, through
sensitivity training, hiring navigators, or providing better information and translation services for
patients, others will require a more formal dialogue on patient care, involving the Champlain Local
Health Integration Network (LHIN), the Government of Canada, and the communities and Government
of Nunavut.

When we asked some of our participants for ideas on how to establish this kind of dialogue, perhaps
their most promising suggestion was to create a Nunavut patient engagement council to discuss some

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of the bigger challenges around better patient care, like making Telehealth work or designing a training
strategy for system navigators.

Although this council would hold quasi-formal discussions with health-care stakeholders, the
participants we talked to thought it shouldn’t be a decision-making body. It should be an advisory body
that exists to create a safe space where government officials, stakeholders, and community voices can
come together for an informed conversation about meeting such challenges.

Having the right representation would be very important, especially at the community level. Community
representatives would have to speak authoritatively for their communities, and get the support from
them to move ideas ahead. Finding such people, we heard, shouldn’t be too difficult. Every community
already has a health committee. Perhaps the council membership could be drawn from these.

It was also noted that, at present, Nunavut doesn’t have any health boards, which means there is no
formal mechanism for local engagement on these issues. Participants thought that the council would
help fill this gap by providing a forum for community leaders, TOH administrators, and officials from the
Government of Nunavut and the Champlain LHIN to explore some important issues together.

The idea of the council resonated with our participants. They saw it as a natural way to move the
dialogue on patient care to a new level. The remaining sections provide some examples of where they
thought such a discussion is needed and could be fruitful.

Telehealth

We had some lively discussions about Telehealth Ontario. Participants agreed that many consultations
that now involve a trip to Ottawa could be done this way, saving money and time, and making life easier
for patients. Last year alone, the Government of Nunavut spent almost $60 million on medical travel. So
why isn’t the tool used more?

Effective use of this technology, said one, simply hasn’t been a priority across much of the Champlain
LHIN. The community has been slow to adopt it, especially if people don’t see others using the tools or
have had a bad experience with them. According to this person, getting Telehealth to work will require
strong leadership.

A health-care professional from Nunavut told us that he has tried for years to raise interest in
Telehealth, but with little success. The system, he said, is badly designed and almost impossible to use.
Until it is fixed, there will be no real progress. In his view, a functional system requires new technology
and more bandwidth.

There is some encouraging news here. In September 2017, the federal government committed $50
million to increase bandwidth in Nunavut. Telesat, the company that provides the service, is launching a
new satellite that will increase internet speed by three to five times by 2019. However, it is unclear
whether this is enough to resolve the bandwidth issues facing Telehealth.7

7 http://www.cbc.ca/news/canada/north/connect-to-innovate-northwestel-internet-nunavut-1.4289747

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A second issue around Telehealth involves patient participation, especially around scheduling. We were
told that scheduling patient meetings has proven difficult. Patients are often unavailable when
practitioners are, especially during the summer months when many Inuit are on the land.

However, we also heard stories that show that Telehealth can work. At Akausivik in Ottawa, doctors
regularly consult by phone, thereby reducing in-person visits. Notably, these appointments are directly
with a doctor, not administrators, which, apparently, does happen elsewhere. Making patients more
receptive to Telehealth poses challenges, but there is no reason to think it can’t be done. One
suggestion was that patients should be introduced to Telehealth in follow-up appointments, rather than
initial consultations, where more hands-on interaction may be needed.

As for our participants, the general view was that Telehealth offers a huge opportunity to improve
services and save money. However, to succeed, two conditions must be met: (1) the technical challenges
must be overcome; and (2) TOH and the Nunavut government must join forces to provide strong and
committed leadership to change the culture around doctor-patient consultations. Such an effort must
be well-resourced and target both practitioners and patients.

Palliative Care

Our participants were strongly in favour of bringing patients back to Nunavut for palliative care. Not
because the services in the South are poor, but because Inuit feel very strongly about being with their
families when they die. Given the distance to Ottawa and the size of many Inuit families in Nunavut,
most relatives are unlikely to make the trip south to be with a loved one who is passing. If the patient
remains in Ottawa, he or she is therefore likely to die alone or have only a few family members around
them. For people with such deep ties to family, this is as much a tragedy for the families as for the
patient.

The lack of doctors in Nunavut did raise questions about providing palliative care in Nunavut, such as
who will be responsible for pain management. But participants felt issues like these could be managed
by qualified nurses. There was also a question of institutional capacity. With just 34 beds, QGH is not
equipped to handle many palliative care patients. In the end, however, most Inuit prefer to die in their
homes with their families around them. Our participants felt this was often the right option.

Enhancing Communications and Information Sharing

TOH is exploring ways to provide Indigenous communities of all sorts with health-related information, so
we asked participants how communities in Nunavut receive information on subjects of public concern
and how they use it within their communities. We were told that:

 Everyone has smartphones and most now use them for transactions as well as messaging,
including operations involving private or sensitive personal information.

 Inuit culture isn’t as verbal as some. It is more visual, which makes certain social media tools
attractive and user-friendly, especially Facebook.

 Community health researchers already use social media to schedule meetings, collect medical
information, and manage relationships with patients.

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 Although local radio remains very popular in Nunavut, social media are now at least as
promising a tool to reach people, including many in the 60+ age-range.

 Some of our participants thought TOH should hold monthly or quarterly education sessions,
such as webinars or other open forums, to engage the communities. TOH could work with local
health centres (and the nurses in them), who, in turn, could engage patients.

 Health centres could also help identify which groups of people in the community might be most
interested and what kinds of information they need.

 Health centres in Nunavut already have some chat groups set up. This kind of initiative would
build on existing programming.

 Despite its popularity – or perhaps because of it – social media can have very negative impacts
on communities. The small populations in Nunavut mean that all the details of an important
story will be quickly disseminated, such as who was in charge when something went wrong on a
medical file. This can lead to nasty social media “gang ups” on health professionals and/or
others when something goes wrong.

In summary, social media constitute a new and highly promising suite of engagement tools for Nunavut,
whose surface has barely been scratched. While the points raised by our participants merit closer
consideration, some of them were quick to add that more outreach is needed. They thought TOH should
join forces with other key stakeholders, such as the Nunavut and Canadian governments, to engage Inuit
organizations and communities in a deeper and more systematic way, and to canvass their views on how
to disseminate health information and/or engage them in a dialogue on health issues. They may have
some surprising answers.

Conclusion

Stronger Voices, Better Care was launched to gather informed views on how dialogue and engagement
can improve care for Inuit patients from Nunavut. The answers fall into two broad categories. Some
focus on how better communication at the doctor-patient level can enhance diagnosis and treatment,
which, in turn, will build knowledge and trust. We can call this the “bottom-up” approach to patient-
centred care because it engages patients directly in the work of diagnosis and treatment.

But patient-centred care can also be approached more from the top down by bringing key stakeholders
and community spokespersons together to discuss how well services are meeting patients’ needs and
what can be done to improve them.

This report looks at the opportunities and challenges on both sides. It is meant as a first step in what we
hope will be an ongoing dialogue between TOH and Inuit patients and communities during the coming
engagement process to support the vision of the new campus.

Finally, let us note that TOH also serves other Indigenous communities, including Mohawk and
Algonquin First Nations and Métis. The hospital plans to reach out to them in a similar way. Stronger

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Voices, Better Care is thus the first of three dialogues to be carried out with Indigenous Peoples in the
Champlain region.

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