“New Directions: A Roundable at The Duke Institute for Care at the End of Life”
Thank you for the opportunity to join Dr. Payne in launching this important initiative. When asked for a title for this evenings remarks – I suggested we include the words complexity, connectivity and consumerism – forces which I believe must be managed and leveraged toward success; and forces which I believe you and your organizations are well positioned to advantage.
Where to begin? In an address at the Institute of Medicine last year, chaired by Duke’s own Ralph Snyderman, I began with these words, “I maintain a strong bias in favor of relationship based health care. In this regard I am in agreement with the values embedded in the current Medical Home concept as laid out in the recent joint statement by the AAFP, the ASIM and the AAP.
3. Mutual Decision Making
5. Holistic Coordination
6. Facilitated technology
7. Quality, Safety, Evidence
9. Personal Relationships
While I embrace the values of ‘Medical Home’, it must be said that it is significantly underpowered to manage the future health needs of this nation. My concerns in 6 words: ‘Too Much Medical, Not Enough Home’.”
That was my bias then, and remains my bias now. Much of the difficulty can be traced from the starting point. Here is where I begin in a model called Home-Centered Health Care. Her name is Anabella. She is 8 years old, the eldest of of our 6 grandchildren. Is she healthy, and what do we mean by that question? For me it means, “Will Anabella reach her full human potential?”
We must look out over a 120 year horizon at the many forces and individuals who will influence her decisions day by day, and year after year. We must plan ahead, consider her uniqueness socially, culturally, spiritually and scientifically. We must be where she lives.
Here is where Anabella lives. This is her home. And her home may be where the heart is – as it is for so many Americans, whether in a single wide drafty trailer or a McMansion . But it is not currently where the health is.
Let me stop for a moment here, and clarify what I mean by home. For me home is both a geographic and virtual term which defines a place where one feels safe and secure, supported and loved, washed, if you will in social capital. And while one’s geographic home may change more than once by necessity, choice, or need; the state of feeling “at home” should ideally follow you.
So much has changed all around us that perhaps we could be excused for having overlooked the home as a logical destination and cornerstone for a health system. Misreading the significance of trends has compounded the problem.
Three quick examples. First, for most, Aging equals numbers (how many over 65, how many over 85). But Aging is not about numbers. It’s about complexity. Before our eyes, the American family is moving from three to four and five generation complexity. 50% of 60 year old’s currently have a parent alive, and by 2050, more than a million of us will be over 100 years old. Health solutions must address the resultant family complexity efficiently and effectively.
Second, the Internet. A remarkable tool, when combined with broadband and wireless, pushing massive information at lighting speed. But it’s true significance?
The Internet ignores geography, and in doing so breaks all the rules – licensure, credentialing, trade, pricing, continuity. Who do you wish to strategically connect to whom, and who and what will be the center of your future health universe?
Third, health consumerism. Three decades of health information empowerment. Doctors, nurses, hospitals agree “The best patient is an educated patient.” Paternalism must give way to partnership. Teams over individuals. Mutual decision making. All good. But health information is giving way to health activism, led mostly by informal family caregivers – family members, almost all 3rd generation women age 40 to 70 – managing frailty above and immaturity below –now laboring as both providers and consumers of care in nearly 25 % of all American homes, without formal support or even acknowledgment. For them, it’s not lack of information that’s literally killing them, it’s the lack of a system.
A sufficiently powered vision then must advantage complexity, connectivity and consumerism. Let’s look at what we have in the simplest terms. Here’s the center loop of today’s health system, little changed in the past 100 years – a loop from office to hospital and back to office. The home is a marginalized after-thought. If you have a health concern, you must generally find your way into the loop.
Now, let’s dream for a moment, and dream big. What if we were to decide that the center of our new health care system would be a loop that went from home to care team and back to home – a rich array of information – personalized, customized, with vital signs, diagnostics, motion data, planning milestones –transmitted automatically and wirelessly in one direction to the Care Team, and data analysis, advice, support and coaching 24/7 coming the other way. Other valued and needed services revolve around it rather then compete with it, all part of a virtual system committed to efficiency, connectivity, and mobility rather then bricks and mortar. Not to understate the challenges associated with such a vision, which are real but manageable.
GE envisioned an engineer-able home when they launched there remarkable “Carousel of Progress” exhibit at the 1964 World’s Fair. I was there, as a 16 year old. And it was, after all, a celebration of toasters and ovens and refrigerator’s (with a prediction of a new gadget called a computer in it’s final carousel turn. But even, as a young person, as I exited that day, I said to myself, “Damn if GE hasn’t “changed our lives” and for the better. The important take-away, if the home is engineer-able, it is engineer-able for health.
Such a vision builds on our strengths. Let’s consider a few. Americans highly value the concept of home –a space where you are loved and sheltered, where people believe in you and root for your success. Americans abhor homelessness, yet have learned to accept healthlessness. Could you ride the home to health, and health to home, improving both in the process?
Second, our Society is signaling support for Universal Health Care. Yet with this right, must come responsibility. Readiness to define roles and responsibilities of individual, family and community in return for Universal Care could provide multiple societal benefits.
Third, the people caring for the people have moved from resisting technology to at least grudgingly accepting it. They must now take the next step toward fully advantaging it’s capacity to humanize, plan, connect and bring order and sense to a segmented and broken enterprise. I call this movement Techmanity.
As for resources, they might consider partnering with sectors – currently locked out of health care – that have significant financial resources, tremendous IT expertise and existing positions in the home including those in the Financial, Home Technology and Entertainment sectors.
Fourth, many are beginning to appreciate that – rather than technology creating a socio-economic digital divide, it may do just the opposite. Connectivity can be targeted at those who need it the most first – whether that be an 18 year old pregnant single mother of 2 in West Philly, or a Montana farm family 200 miles from the nearest hospital, or the only daughter of a widowed mother living alone three states away.
Finally, embracing the trends may allow us to efficiently and effectively manage existing chronic disease burden on the one hand, while simultaneously building a truly preventive system that will serve Anabella, her children and her grandchildren on the other.
But to do so, we must deliberately and strategically reconnect the multi-generational American family, whose health segmentation and segregation has occurred under our watch. This means that your long term care organizations and your mobile care teams, as they enter the home to deliver today’s 4th and 5th generation services should have their eyes wide open to tomorrow’s needs among 1st, 2nd and 3rd generation family members – especially in the areas of personalized health planning and strategic health coaching.
It also means that we will no longer sell the American family short. If we are to provide universal care in this country, we must insist that this right is accompanied by responsibility. We must therefor, deliberately and with absolute clarity and aligned incentives, define what are the health responsibilities of individuals, families and communities in a modern society.
Two measures of the successful reunion of the American family are: First, that caring and measured reliable support flows freely up the generational divide with good grace and as an expression of human goodness. For this to be feasible we must first identify all informal family caregivers and then integrate them into our care teams and support them with meaningful system support and resources. In a modern preventive health care system. we are all providers, we are all consumers.
Before I turn to the second measure of success in family reintegration, a personal note on caregivers – they labor in silence and without support or recognition. If my mother were here today, IF she were here today, she could speak far more eloquently than me about the plight of informal caregivers. She was one of them. For over 5 years, she hid my father’s Alzheimer’s from her 12 children, an expression of her loyalty to him. When it could be hidden no longer, she brought him up to me at Pennsylvania Hospital and we had him evaluated and diagnosed. Little changed in the beginning. She was insistent on caring for him herself. A proud woman like this believes she can manage without interference. 24 months later I received a second call. “Michael, I’m coming up to be checked.” “For what, Mom?” ” Well I have some abdominal pain that’s bothering me. I’ll be there tomorrow.” “How long has that be going on Mom?” “I don’t know, 6 months, maybe 12. I’ve been busy you know.” The next day she flies in with my father in tow. CAT Scan, surgery, diagnosis. Ovarian cancer. Chemotherapy. Two and a half years later, she packs my father off in the Alzheimer’s day care bus, lays down on a couch and dies, a full three years before he passed away.
Her story, I know you know, is not unique. Caregivers struggling on their own – giving care, not part of the care team – providing 24 hour coverage segregated from support, disconnected from others like themselves with whom they might share strategies and support. And as a result, these caregivers often become ill themselves, and not infrequently die before those for whom they are caring.
Now on to the second measure of success in reuniting the American family. The second measure is that – as caring flows up the generational divide – learning’s, wisdom, and strategies to accomplish health and full human potential flow naturally down the generational divide.
Let me elaborate on this imperative. If I am a female 55 year old, 3rd generation informal caregiver today, caring for my 77 year old mother with a fragile fracture from osteoporosis, I should be asking two questions. First, how can I best support her independence and dignity, managing her pain and holistic needs as she recovers? And second, since 52% of women my age with mothers like mine have silent osteoporosis, how can I avoid becoming like her 20 years from now. But is that enough? The simple answer is no. I need also to consider the fate of my 27 year old daughter, since 98% of her skeletal framework (strong or weak) was set in stone by age 20. Furthermore, what of my 5 year old granddaughter? Her diet, weight, level of activity, and behaviors toward cigarettes and other substances as a teen shall soon define her future potential for osteoporosis.
So as you can see, for each of the chronic diseases which you and your organizations so diligently and gracefully manage, there is a multi-generational progression beginning in very early life. And unless we are able to leverage and advantage multi-generational learning, to move knowledge, services, and coaching if you will downhill, we can not hope to realize a truly preventive health care system.
What’s missing and where do we begin? I will leave the second question open for discussion, but will end my remarks by describing one missing “killer application” under development by everyone from Google to Microsoft to Intel, and 100’s of entrepreneurs in between. I predict this killer application will be ubiquitous on all new computers within 5 years. It will supplant Electronic Medical Records (EMR’s) and Personal Health Records (PHR’s), and it will come from the Consumer side, with or without support from clinicians. This single killer application will be the “tipping point” for a truly Preventive Health Care System.
I call this application an LPR, for Lifespan Planning Record. It is a graphically pleasing, highly powered, software application, capable of “sucking-up” automatically a wide range of individual, family, community and environmental and scientific data; converting that data into a personalized, predictive, preventive and participatory strategic health plan as described by Ralph Snyderman here at Duke; and will dynamically adjust that plan in real time to promote desirable outcomes, modifying the plan as needed and inputting targeted information in support of adherence. With what we know today, Anabella’s 120 year plan would already be embedded with thousands of targeted inputs, 10 years from now, hundreds of thousands.
Finally, since I believe that your organizations, with your missions and mobility, your holistic values and focus on continuity, and your home based positioning will serve as the leading edge of home-centered health transformation, let me highlight the human resource implications. I believe the time has come to actively redefine all job descriptions, including that of the physician. I believe as well that team composition needs a critical overhaul since your team was likely formulated and defined to support a backward facing, segmented short term, reactive system rather than a forward facing, integrated, long term, proactive planning system. An effective human resource plan for a modern system must succeed in double connecting the people to the people caring for the people, rather then relying on fail-safe pure consumerism to act as a double check on our historic weaknesses in care design and delivery.
In short, we need to be reminded, refreshed and renewed. New teams, inclusion of family caregivers, and techmanity – in the home, not the operating dome. And, as if this is not enough, let me share with you one last challenge I placed in the laps of the Grantmakers in Aging in Princeton last year. I asked them, in addition to funding aging, to commit to simultaneous funding early childhood intervention programs. Why? Because in my view, if we continue to fail from zero to three, we will ensure a future chronic disease burden that is unmanagable in size, scope and complexity.
So in summary, Medical Home’s values are not wrong, but it’s destination currently is. But that could, and I believe must change. If we are to preserve relationship based health care, we must embrace the trends and lead with a vision sufficient powered to excite the imagination. That vision must embrace complexity, connectivity and consumerism – while reinforcing the social capital embedded in the relationships between the people and the people caring for the people.
This will not be easy. The great Cardinal Bernardin of Chicago summarized the challenge a decade ago, some weeks before he died of cancer. Standing before 2000 doctors at an AMA Annual Meeting, he said, “There are four words in the English language that have common English roots. They are Heal, Health, Whole and Holy. I tell you this today because to heal, you must provide health. And to provide health, you must keep the individual, the family, the community and society whole. And if you can do all that, why that is a holy thing.”Thank you for including me in these proceedings. I look forward to the next two days.