Re-Imagining Care at Home

Last night, Jim went over to Nick's to watch the hockey game, leaving me free to watch my choice of television shows with dinner on my lap.  I went straight to PBS and found 'Rx: The Quiet Revolution', a documentary film on healthcare transformation in America.  I was particularly interested because recently, I worked on a committee looking at home and community care in Ontario.  Our report was titled 'Bringing Care Home' and many of the challenges we discussed were similar to those examined in the film.  Here's a description of the documentary from the PBS website: 

A staggering 50 percent of American adults suffer from a chronic disease such as diabetes, heart disease, obesity and arthritis — and one in four has two or more chronic health conditions. In Rx: The Quiet Revolution, you’ll travel across America to discover a quiet revolution happening in medicine. From Maine to Mississippi, Alaska to California, see physicians, nurses and other healthcare professionals placing the patient at the center of their practice — transforming the way medical care is delivered while lowering costs and improving outcomes.

Rx: The Quiet Revolution peels away the clinical barriers to 'knowing' patients and instead proposes a relationship-based model involving house calls, real conversations and even hand-holding.  The NUKA model of care from Anchorage, Alaska, is profiled in the film as an innovative example of improved patient outcomes together with health economic benefits.  Dr. Douglas Eby, the pioneer of NUKA says positive change resulted from clinicians developing and deepening 'friendly, professional' relationships with patients or 'customer-owners of care', as they are called in Anchorage.  I've been a fan of NUKA for years and have written about it in my book and here, in my blog.  

Although there are many, many good and hopeful messages in this film, there is one aspect that is glaringly absent - the role of family in community care.  We all need the changes depicted in Rx: The Quiet Revolution.  We need compassionate doctors who take time to talk because we need them to understand what our illness means to us.   We need doctors to make house calls when can cannot get to their offices.  And we need medical professionals to work in inter-disciplinary teams so that chronic illness can be treated in the community.   But there is a vital message missing in this film - patients (even when they are called 'customer-owners') do not live in a vacuum.  They survive at home with the help and support of friends and family who are integral in the circle of care and key to enabling the wellbeing of their loved one.  

From 'Bringing Care Home': 

When services are provided in an individual’s home, other family members, including the extended family, friends and neighbours, are often involved in providing care. The residents of Ontario told us that they want the family to be the ‘client’ and the planning and delivery of care to be truly client and family-centered. Although policy makers and providers have long supported the principle of family-centered care, home and community care continues to look more like it is focused on what the providers want, rather than on the needs and preferences of clients and families. 

Too bad that the creators of Rx: The Quiet Revolution did not include the family in their vision of community health care transformation.

The Wisdom of Caregivers: Part II - Our Power and Love

Recently, I wrote about the wisdom and knowledge of caregivers.  Families giving care sometimes feel that they are operating in a vacuum - that the only compassionate place is the home because societies in which we live are driven by an ethic of individualism, consumerism and the perpetual growth of a paycheck.  So, how can we nudge our neighbours, institutions and governments to value and support our caregiving life? How can we create communities that will 'future-proof' our vulnerable loved ones and ourselves?  How can we teach our fellow citizens to behave with compassion and be allies in 'judging and acting fairly'?

AdamKahane, in his book “Power and Love” wrangles with society’s toughest challenges.  He writes about joining hands across divides to co-create solutions to difficult social problems.  He writes “In order to do that, we have to work with two distinct fundamental forces that are in tension: power and love.  Kahane defines power as “The drive of everything living to realize itself, with increasing intensity and extensity.”  So power in this sense is the drive to achieve one’s purpose, to get one’s job done, to grow.  Much of our consumer driven society functions on that operating system.  He defines LOVE as “the drive towards the unity of the separated.  So love in this sense is the drive to reconnect and make whole that which has become or appears fragmented.  

Kahane says we need a little love AND a little power if we want social change.  I believe that our caregiver advocacy movement is dominated by love and that we could all use a dose of power.  If we are dominated by love, governments are dominated by power.  They are so fragmented that for many, applying for assistance is more bother than it's worth.  My years of applying for respite and homecare funding have led me to believe that the starting question for bureaucrats who design these social programmes must be, “How can we make this programme accountable?” rather than,  “How can we make this programme helpful?”

Listen to what Kahane says about balancing love and power to achieve social change:

People who can understand the concerns of others and mix those concerns with their own agenda have access to a power source denied to those who can push only their own interests.  In this fuller understanding, power is a verb meaning to give and take, to be reciprocal, to be influenced as well as to influence.  To be affected by another in relationship is as true a sign of power as the capacity to affect others. .... As you become more powerful, so do those in relationship with you.  As they become more powerful, so do you.  This is power understood as relational, as power ‘with’, not power ‘over’.  Deep change, Kahane maintains, calls for a balance of these two forces because systems based on just one of those forces alone will result in stagnation.  And this carries the risk of the overall failure to respond to the chaotic changes that are the natural fallout of human relationships. 

The impetus required to reinvent the most deeply embedded habits is called for when the results of ineffective systems are a great enough irritant to the majority, that a general consensus to throw in the towel ensues. 

This happened in Anchorage Alaska when Dr. Doug Eby and his colleagues became so frustrated with the poor outcomes of traditional western medicine that they invented an entirely new blueprint for delivering healthcare. 

The NUKA Model of Care was born out of the realization that the “owner/users”, as their patients are called, held a good deal of the power for achieving decent health outcomes.   Particularly in the case of chronic care,  it is often patients who decide whether or not to fill a prescription or to take a full course of medical treatment.  The NUKA model of care retained a traditional model of ICU care, because in that setting, patients need systems to take over.  But Dr. Eby describes the design of traditional health care delivery for chronic conditions as akin to throwing a stone at a target on the wall.  In the messy business of dealing with people, he says, it is not a stone you are throwing at the target, but a bird.  No matter how hard you throw that bird at the target, it still may veer off in another direction before it hits the wall.  Systems that are rooted in the respect for freedom, yet offer support for our failings or changed trajectories, will result in better outcomes.  Dr. Eby worked with aboriginal elders in Alaska to reinvent a healthcare system that balanced love with power.  NUKA's operating system is designed to work within the messy realities of real life and real caregiving. 

Kahane’s ideas and the NUKA model of care combined with our knowledge and experience give us an inkling of how to begin thinking differently about crafting a future for ourselves and most importantly, our vulnerable loved ones.  What are the forces that have power over us and prevent us from reaching our goals?  One force is our own inclination to diminish the value of our needs.  Instead, we look at programme requirements and funding eligibility and stay awake nights trying to squeeze our family circumstances into those narrow parameters.  I remember years ago, filling out a form for home help.  An older, more experienced Mum was sitting beside me at the kitchen table and she asked, “how much are you asking for?”.  I replied, “Ten hours a week, that’s the maximum.”  “But that’s ridiculous,” said my friend.  “You need at least thirty hours a week. Write 30 hours.”  I began to realize that day that Nick’s needs were not something imaginary.  Certainly, I did not need to apologize for the manpower it required to keep him alive, well and happy.  And if government did not provide me with the help we really needed, well, I would look elsewhere.   I would begin to imagine what network centred care might look like for my family and how, together, we could invent solutions for future proofing Nicholas.

Here's something new: our family (like many others) is using technology to share the care, wisdom and knowledge.  We use an online social network called Tyze, a kind of highly specialized version of Facebook.  Regular readers of my blog will know that I am a huge fan of Tyze - I have written often of the benefits of online care coordination and the capacity of technology to help families share the burden of care.   Let me tell you a bit about how we use Tyze in our family.  We began by inviting members of our family to the site, simply to keep them up to date on the health and daily life activities of Nick.  At that time, Nicholas’ nursing needs were very high.  We were running a home hospital and trying to ensure important messages got through to all his care staff was increasingly difficult and frustrating.  I would leave notes about medication changes or other critical directives in a bedside chart, on a white board above Nick’s bed and still they would be missed.  I began to think that perhaps I could use Tyze for caregivers, our doctor, social worker and any other professionals on an as-needed basis.  Now, we keep the family in touch with Nick’s news via emails and Facebook.  Tyze became, for us, a secure way to let everyone know about medical or rehab issues, to alert the team to things like skin breakdown and bowel protocol, and to keep a daily seizure record.  We are very fortunate that Nick’s GP agreed to participate in our Tyze site - he can check in anytime to see how Nick is doing, especially if there are fluctuating symptoms, which there often are.  We a Tyze site for my Mom's care too.  In her case, we use it to coordinate the support she needs between members of our extended family.  If and when her needs increase, we'll invite paid caregivers to her network. 

Technology is a gift that connects us to our past, our friends and our neighbourhoods.  I use a blog and a facebook page to advocate for families who give care to someone who is vulnerable. Our story-telling online is vital because it will, over time, shift opinions in the wider society about the value of giving and receiving care. The caregiving narrative in all its forms is the most fundamental tool in shifting attitudes about our knowledge and wisdom in wider society. 

I have never met another caregiver who did not know what they needed to thrive as a family.  We know that paid care together with the love and support of friends, family and neighbours is for us, the key to a good life.  This is a future we must build for everyone, including those with differing abilities.  We must balance our love with power.  We must ally with anyone who shares our vision for an inclusive society and must build a future where care is valued and shared.  Our future depends on it. 
My book, "The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving" (House of Anansi Press, 2014) is available now everywhere in Canada and for pre-order online in the US.  

Innovation and Ethics - Across Sectors

On the morning of June 6, 2011, I gave the festival keynote address at the FICCDAT conference in Toronto (the Festival of Conferences on Caregiving, Disability, Ageing and Technology). Here is my speech on INNOVATION AND ETHICS.

Recently, I heard the British social innovator Charles Leadbeater say “Your vantage point determines everything you see”. Let me begin by telling you about my vantage point.
My name is Donna Thomson and I am a mother and an author. This is my family – my daughter Natalie is 19 and a student at the University of Toronto. My husband, Jim Wright, is the High Commissioner for Canada in the United Kingdom. My son Nicholas is 22 and is disabled with cerebral palsy. Until Nicholas was 18, I provided him with almost all of his nursing care. Thanks to innovations such as a computerised spinal cord pain pump, gastrostomy feeding tube, oxygen saturation monitors together with the loving care of our family, Nicholas has survived. But the social innovation required to sustain Nick in the community has not kept pace with the medical breakthroughs that keep him alive. Nicholas is so high-tech and high maintenance now, that no existing policy, programme or service can easily meet his needs. My vantage point has led me to reflect on how we might nurture innovation across the sectors of science, community and family.
Nicholas is representative of the first generation of people with disabilities who will outlive their predicted lifespan. Many members of this cohort will even outlive their parents.
But it’s not only people with disabilities who are surviving – the average life expectancy in Canada is climbing. Babies born today can expect to live nearly 81 years. My mother who lives in Montreal is 89. Of course at that age, she has health problems – in fact she was in the hospital last week, but thankfully, she is better now and home again in her apartment.
The theme of this conference is "Living Longer and Living Better". I believe that we can do that if we change our collective vantage point.
Of course experiences can rearrange our vantage points, but so can ideas. The idea that changed my vantage point was something called “The Capability Approach”. Amartya Sen won the Nobel Prize for Economics in 1998 and the Capability Approach is his great idea for rearranging the economist’s vantage point when looking at extreme poverty. He decided that household income and GDP were poor indicators of human and even economic wellbeing. Rather, he proposes that we need to examine whether people have a life that they value and have reason to value. Money is just one factor in a good life. But there are others equally valuable – such as loving relationships and whether or not someone has the resources to convert money into good living, as in the case of disability or old age.
Looking at the entire range of possibilities for flourishing within circumstances of adversity was what won Sen the Nobel prize. He positions the idea of freedom to imagine, to choose and to act at the heart of his definition of a decent human life.
Through the generosity of the Printing House Charitable Office and McArthur and Company Publishing, you will find a copy of my book “The Four Walls of My Freedom” in your FICCDAT conference pack. When Nicholas was growing up and battling the effects of severe cerebral palsy, I believed that our struggles with Nick’s disability were private and of no concern or interest to anyone outside our family and friends. But Amartya Sen’s Capability Approach offered me a lens to evaluate my family experience with adversity so that it had relevance to anyone concerned with freedom, active citizenship and caring societies. The research and reflections for my book led me to the conclusion that innovations, policies, programmes and services for those with care needs should be designed according to the principles of “least restrictive and most supportive”.
So, in the context of my family experience, what does an innovation for our community designed on the principle of “least restrictive, most supportive”, look like? Well, I think it looks like an Ipad application. Nicholas uses a communication app called Proloquo2Go.
This is an app that was designed by someone with expertise in both computer programming and speech language pathology. But apps are designed to be whatever the user wants them to be.
The programme is totally customisable, which is least restrictive. But it has open source information sharing about its infinite number of uses and malleability which is most supportive. Inventors of Ipad applications often have no clear idea how their programmes will be used. The developer devolves creative ownership to the user so that ongoing problem solving can occur in a way that is highly responsive and personalised. In social care terms, I do not want a day programme for my son that runs only on Wednesday mornings, for example. Nicholas is bedridden, so couldn't access the programme anyway. For us, personal budgets or care vouchers would offer the flexible benefits of an "app".
Fundamental change, or radical innovation, nearly always necessitates the turning upside-down of power relationships. The idea of the consumer as co-collaborator is radical in itself. The former Shell scenario planner, now turned social innovator, Adam Kahane, wrote a book called “Love and Power”. Kahane defines power as the drive toward self-realization. And he defines love as the drive toward unity. Deep change, he maintains, calls for a balance of these two forces because systems based on just one of those forces alone will result in stagnation. And this carries the risk of the overall failure to respond to the chaotic changes that are the natural fallout of human relationships.
The impetus required to reinvent the most deeply embedded habits is called for when the results of ineffective systems are a great enough irritant to the majority, that a general consensus to throw in the towel ensues.
This happened in Anchorage Alaska when Dr. Doug Eby and his colleagues became so frustrated with the poor outcomes of traditional western medicine that they invented an entirely new blueprint for delivering healthcare.
The NUKA Model of Care was born out of the realization that the “owner/users”, as their patients are called, held a good deal of the power for achieving decent health outcomes. Particularly in the case of chronic care, it is often patients who decide whether or not to fill a prescription or to take a full course of medical treatment. The NUKA model of care retained a traditional model of ICU care, because in that setting, patients need systems to take over. But Dr. Eby describes the design of traditional health care delivery for chronic conditions as akin to throwing a stone at a target on the wall. In the messy business of dealing with people, he says, it is not a stone you are throwing at the target, but a bird. No matter how hard you throw that bird at the target, it still may veer off in another direction before it hits the wall. Systems that are rooted in the respect for freedom, yet offer support for our failings or changed trajectories, will result in better outcomes.
So says Dr. Eby and he has the empirical data to prove it.
Thirty years ago, a group of aging parents from Vancouver began to worry about who would love and care for their adult children with disabilities after the parents died. These mothers and fathers felt desperate at first. Knowing that their offspring were part of the first generation of children with disabilities who would likely outlive their parents, this group decided to do something very radical. They gave up on the idea that government ALONE could be relied upon to love and care for their children. This realisation proved to be a watershed. Now, they had a blank slate with no rigid assumptions in their future planning. They changed their vantage point. They asked “What IS a good life?” This group decided that the key to a good life was loving relationships.
The next task was to build an organization that could broker, sustain and coordinate loving relationships that would endure for their children’s lifetime. Everyone in the group agreed that their children would be safe with a circle of friends and family who truly loved and cared for them. Planned Lifetime Advocacy Networks, or PLAN, was born. Personal support networks consisting of family, friends, neighbours and community members were organized to offer a natural kind of love, friendship and constancy to vulnerable adults.
The network would also assume the advocacy and monitoring role that normally falls to parents.
Groups representing the interests of those with issues related to aging, homelessness, addictions, teen pregnancy, and mental illness began to take notice. They replicated the model of personal support networks for their vulnerable populations. And the unanticipated positive outcomes didn’t stop there.
Social scientists and contemporary anthropologists were noticing a disturbing trend of isolation and loneliness in healthy populations. Isolation is a well documented negative health determinant. Current demographic trends mean that most people today live far away from their extended families. Many people are not acquainted with their neighbours. But those who participate in supporting a vulnerable individual as part of a small group reported feeling happier themselves. They were less isolated and enjoyed a greater sense of meaning in their lives.
Canada is experiencing a climate of reduced budgets and increasing costs in health and social care. At the same time, public servants face a daily imperative for accountability, transparency and results-based management.
I am married to a public servant, so I can attest to that. But fiscal pressure can sometimes provide the impetus for change.
PLAN is a model that provides an opportunity to shift from patient centred care to network centred care - a shift that front line professionals are beginning to realise holds potential to ease pressure on their budgets, by coordinating support for a vulnerable individual in the community. Accountability and transparency are natural outcomes of support networks which consist of people who share objectives that affect someone they love.
In these examples of transformational change, the protagonists followed similar steps. They set aside their assumptions about the status quo and prepared themselves to imagine something different - something better. They rearranged their vantage point in order to generate a new set of fundamental objectives. They aligned with others who shared a vested interest in working to a common purpose. And every participant was considered an equal co-creator, regardless of professional qualification. The umbrella organisation had ultimate responsibility for outcomes, but collaborated with users right up to the management level.
In business terms, all these approaches including the Capability Approach apply the principles of cultural decision-making rather than administrative decision-making.
These models build in the capacity to bend rules in a way that is responsive to the messy and fluid requirements of those living with challenging circumstances. These models build in authentic collaborative relationships across the spectrum of provider and end user because the authors understand the concept of interdependency.
My family uses a wide range of services and innovations. I passionately WANT to collaborate with professionals involved in both my son's and my mother's care. And I am not unique in this regard.
Family members who provide complex care to a loved one develop a myriad of skills and a wealth of knowledge. We want the freedom to use our knowledge and skills LIKE an app - in ways that will give us a life that we value and have reason to value. We want access to innovators so that we can customize our care and support on a continual basis. If we are the bird and we collaborate closely with the person tossing us toward an agreed target on the wall, believe me, we will fly toward that target and we will land there every time if we possibly can.
Most of us here at the FICCDAT Conference represent cultures and societies that do not suffer from widespread extreme poverty.
But that doesn’t mean we don’t have important lessons to learn from the slums of India, the favelas of Brazil or the economists who seek to create better lives for those who are very poor. Necessity is the mother of invention. And the worldwide recession, combined with the demographics of aging and an explosion of technological innovation, provide us the seeds of real, positive change if choose to sow them. And that vantage point is full of hope and possibility.
It is my vantage point. I wish you all a wonderful FICCDAT conference.