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Learning about elder care in Finland

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When I first got here I envisioned frequent posts about my experiences here. And then suddenly it is June!

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This week Masters of Social Work students from Michigan State University were in Tampere with my colleague Karen Newman as part of our MSU – Tampere of University of Applied Sciences exchange. They visited a variety of agencies, had class with Finnish MSW students, and had fun learning about social services here, the Finnish culture, and the ways we are the same and different.

I’ve learned a lot in my time here as well. Thanks to my collaborator Ulla-Maija Koivula for putting together a great program for the students and making my time here so pleasant and productive.  (Here are are some blog posts by Ulla-Maija and her students who visited the United States in Fall 2013. Sorry – it’s in Finnish, but there are some pictures and headlines that will give you a sense of where they went).

Here are a few tidbits from what I’ve learned so far related to elder care:

  • As in the United States and elsewhere, elder care is in flux. Finland is struggling with a lagging economy and a growing population of older adults. They are making changes to the structure of all health and social services and anticipate more changes on the horizon
  • The focus for elder care and the issues Finland is facing are also similar to those in the United States. In particular, there are more resources being put into caring for older adults at home for as long as possible so that residential care is a final resort. Consequently, older adults are in need of more care by the time they enter residential care, although staffing has not always changed to accommodate this greater need.
  • The City of Tampere has been quite thoughtful about how to manage this shift. For example, they closed geriatric residential units in a local hospital and used that money to fund a start up project for an in-home rehabilitation program. After a year of getting the program off the ground, it has become integrated into overall home health services as a means of improving customers’ quality of life and helping them stay at home longer.  This service isn’t free, but older adults pay on a sliding scale based on their income.  The balance is covered by the municipality and for those who can’t pay anything the full cost is covered.
  • As in the United States, the people who do this work do it because they love it and they love the people. It’s hard work that can be both physically and emotionally draining, but the people I have spoken to have a passion for it.
  • Unlike the United States, there is very little turnover in residential care staff in Finland. I need to delve into the details and reasons behind this a bit more. Two initial thoughts that come to mind include better financial supports (including salaries as well as the overall health and social services available to workers and customers) and the country’s investment in education (which is free at all levels) which means that workers in all roles tend to be better educated.
  • The decision to enter residential care is not entirely up to the older adult and his/her family. More on this later, but in a nutshell, an interdisciplinary municipal board made up of health care professionals evaluate the situation of the older adult and if he/she meets the criteria they will be placed on the waiting list. When they reach the top of the list, the next available place will be offered to them which may or may not be in the facility of their choice.

More thoughts about differences and similarities in future posts. And if anyone has suggestions for slowing down time, please let me know.

Will we ever reach racial equity?

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There is no doubt that we’ve made great changes in health and health care. Life expectancy has increased dramatically over the last century and many diseases have been eradicated or at least are better treated than ever before. There is also no doubt, however, that these advances are not equally distributed across the U.S. population. Black Americans, for example, have a life expectancy 3.8 years lower than whites, many minority groups have poorer health outcomes and higher incidence of a variety of diseases compared to whites, and despite equal levels of need are less frequently provided with procedures like hip replacements that can greatly improve quality of life.

Dr. Daryll C. Dykes gives a good overview of the history of legal efforts that have contributed to current health disparities. He also notes several provisions in the Affordable Care Act that address disparities in health and health care. These include increased access to quality health insurance and health care; expansion of Medicaid and the Children’s Health Insurance Program; health benefit exchanges (including outreach and marketing of those exchanges to meet the “needs of underserved and vulnerable populations”); tax credits for eligible households to provide assistance with premiums for health insurance purchased through the exchanges; and additional money for the operation, expansion, and construction of community health centers. These are general programs that benefit all of us, but theoretically will have a greater impact for groups, such as Hispanics and African Americans, who tend to have lower rates of employer-sponsored health insurance coverage.

There are also other measures targeted specifically at health disparities. These include efforts to diversify the workforce and the creation of the Patient-Centered Outcomes Research Initiative which has as one of its five priorities to identify “potential differences in prevention, diagnosis, or treatment effectiveness, or preferred clinical outcomes across patient populations and the healthcare required to achieve best outcomes in each population.” There are also expanded enforcement mechanisms that apply not only to intentional discrimination practices and policies, but also to those policies and practices that disproportionately impact minorities.

Why is this important? One example is illustrated in some of the work of Dr. Louanne Bakk who writes about, among other things, racial and gender inequities that have been unintentionally perpetuated through the structure and administration of Medicare Part D.   (Full disclosure, she was one of my doctoral students and I’m very proud of her). Her research on Medicare Part D suggests complex relationships between the way a policy is structured and racial disparities, for example, racial differences in not adhering to prescribed medication use that are perpetuated or increased because of cost sharing measures embedded in the policy.

Also important is training current workers about structural racism and cultural competence. No matter our best intentions as individuals, unintentional bias can influence our interactions with clients and can shape organizational level policies and actions too. (Not to mention, of course, purposeful bias and discrimination!)

The Undoing Racism Workshops (URW) are one effort to address institutional racism. These workshops use “dialogue, reflection, role-playing, strategic planning and presentations” to challenge participants “to analyze the structures of power and privilege that hinder social equity and prepares them to be effective organizers for justice.” In a recent article published in Race and Social Problems, Mimi Abramovitz and Lisa V. Blitz surveyed URW alumni to examine the extent to which they have used what they learned to advance racial equity in their organizations.  Respondents reported an increased knowledge and understanding of structural racism and most of them left the workshop motivated and more aware of how organizations can address racial equity. Not surprisingly, those who returned to a supportive organizational culture were more likely to engage in this work, with or without the active involvement of organizational leadership. More white respondents, however, reported having access to organizational decision makers while more people of color worried about getting into trouble at work and tried to keep a low profile when working for racial equity.  A perfect example of how institutional structures and culture can thwart individual efforts.

Overall, while there was some progress toward racial equity in their organizations, it was limited. Interestingly, more progress was reported in organizations where the staff and the people served were more diverse, perhaps because the diversity in their organizations provided more pressure and motivation to engage in this work. (This also further supports the importance of working towards a diverse health and social welfare workforce).

Of course, this study only gives us a small snapshot of a tiny piece of a large and complex issue. But, hey, whole and beautiful pictures have been made from lots and lots of little dots.

We have met the old people and they are us (with apologies to Pogo the Possum)

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Ageism is alive and well and so are discussions and debates about what it means and how worried we should be. One small example, the varied opinions expressed in response to a letter to the editor published in the New York Times.

When you’re immersed in gerontology research or practice it can be easy to forget that not everyone views aging and older adults the way you do (which I would say for aging professionals is overwhelmingly positively).  I think this tension between the professional and non-professional views of aging intriguing and so was interested in a recent report by the Frameworks Institute. The report shares results from a study, developed and funded by an impressive collaboration of organizations dedicated to older adults and issues of aging. The study compared experts and members of the public in their beliefs about aging.  The results are not based (and do not pretend to be) on a representative sample, but the authors raise interesting issues that have implications for aging-related policy.

Here are a few of the findings that I found most interesting:

 

  • To experts aging is a normal process that starts from the day we are born. The effects of experiences through our lives are cumulative and are carried forward into old age. Aging is not, however, synonymous with disease or disability. In fact, aging provides opportunities and strengths as well as challenges. In contrast, the members of the public interviewed overwhelming saw aging as inevitable decline and deterioration. It is something to be fought against, not embraced.
  • The experts tended to see increased longevity and the accompanying demographic shift to an older population as a collective issue that requires a collective response. It influences not only our approaches to health care, work, and retirement, but transportation, urban planning and so on. Social factors (e.g., education and work opportunities, race, gender) shape individual experiences of aging. Developing and improving the needed infrastructure and addressing these factors are policy issues. The public talked about aging in terms of the individual life course without any reference to larger demographic shifts or social determinants. They believe that the needed systems are already there, older adults just need to be educated about them and then take the initiative to access them.
  • In fact, this issue of collective vs. individual responses came up quite a bit. One of the striking things was the “us vs. them” way in which the members of the public tended to talk about older adults. But, hello, you are aging too and will be an “older adult” yourself someday! Sorry. There is no us and them, there’s only us (hence my theft from Pogo). This separation of us from them clearly paralleled other beliefs. While experts, for example, note the economic, social, and political power of this growing sector of the population as well as their diversity, members of the public talked about older adults as a homogeneous group that is being left behind by rapid social changes that they just aren’t able to cope with. Life, they say, is harder now for older adults with families spread out and a struggling economy that makes the lives of older adults less financially stable and requires that they work longer. (I’m always a bit skeptical of these kinds of claims.  Was aging really easier in, say, the Depression?)

 

Of course, aging is both a social and an individual experience.  But overall, the experts tended to have a more balanced view of these two dynamics than the members of the public who were interviewed.  There’s more in the report and I encourage anyone who is interested to take a read. Given the small, purposive samples, we can’t generalize the findings too far, but they raise good points for discussion.

 

So . . . discuss.

Hei Suomesta! (Hello from Finland!): Crowd sourcing my interview questions

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Okay, I’m not physically in Finland yet, but mentally . . . ? tampere

I’m looking forward to my time in Tampere. In particular, I’m excited to:

  • Participate in the Tampere University of Applied Sciences Social Science International Week;
  • Practice my Finnish (friend, colleagues, family – please speak to me in Finnish as much as you can stand it);
  • Learn about elder care in Finland.

As a reminder, I am comparing elder care in Finland, Estonia, Romania (a new addition!), and the United States.  My questions and focus have evolved over the semester. (Reading and thinking and talking to people does that). I’m still interested in workforce issues and how each country is preparing for the impending shortage in health care and social service professionals prepared to work with older adults. But, much of that information I can gather from existing sources.

The added value of talking to actual people is that I can learn about their experiences on the ground. So in each country I want to talk to service providers, older adults, and informal caregivers about their experiences with elder care. Why? There is evidence that different health care and social service systems lead to different population-level results.  But what about the lived experience of those receiving those services? Do older adults, caregivers, and service providers have a different experience in Finland than they do in the United States? And, if yes, what are those differences and where do they come from?

I don’t expect to answer these questions over the next seven weeks, but I hope to talk to as many people as possible to get the ball rolling.

Here’s where the crowd sourcing part comes in.

First, if you know someone in Finland I should talk to – who works in elder care, an older adult receiving care, a family member or friend helping an older adult – let me know (in other countries too, but I may not get to them this time around). I will ask an hour of their time tops, with the actual interview lasting 30-40 minutes.

Second, if you could ask them anything you wanted, what would you ask about their experience? Here are my initial questions. All you thoughtful, curious readers, feel free to edit, delete, add, or otherwise share your thoughts.

For Service Providers:

  1. Please describe the structure and services of this office.
  2. Please describe your role as a [position title] within this office.
  3. What is your background? [education, pathway to this position]
  4. Please describe a typical day (or yesterday or one day last week). Who did you see? How many did you see? What did you do with them?
  5. Please describe the structure of elder care in Finland/Tampere, particularly as it relates to what you do. (How are clients referred? How are services paid for? What happens when someone can’t pay?)
  6. What is the hardest thing about your job?
  7. What is the best thing about your job?
  8. Anything else you would like to share?

For clients/caregivers:

  1. What types of services are you receiving currently?
  2. What led you to seek help?
  3. When was the last time you received services?
  4. Please describe the experience for me? (Interaction with service providers. Ease of making appointments, wait times, paying for services, getting there.)
  5. What do you like about the services you receive?
  6. What has been most challenging?
  7. Anything else you would like to share?

Post your suggestions below.

Thank you to the American Scandinavian Foundation for supporting this research.

 

 

What do we want? Better support for informal caregivers!

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In one of my very first blog posts, I wrote about the 2015 White House Conference on Aging (WHCoA) and shared my post to the WHCoA website about geriatric workforce development. One comment I received from that post was about the importance of support for informal caregivers. The importance of informal caregivers to long-term care should not be overlooked. In fact, in response to this comment, I’ve incorporated more about informal care into the current cross-country comparative work I’m doing.

Since I wrote that post, The Gerontologist has published a special issue dedicated to the WHCoA. Three of the articles in this issue talk about informal caregivers and their importance to long-term care.  Here  is some of what I took from these articles.the gerontologist WHCoA special issue cover

Long-term care combines room and board, personal care, and medical care. That leaves a lot of room for interpretation and innovation in terms of how those pieces are put together. The current long-term care system has been cobbled together over time.  Changes have often been made in response to scandals, resulting in a lot of focus on safety rules and regulations and less on the things that people say they actually want in long-term care – as much autonomy as possible and a good quality of life. In the interest of safety, we have taken away the ability of frail older adults to take informed risks about how much and what kind of care they want. We have focused on more training for professional service providers rather than considering how the current workforce could be used more effectively. The system needs to be redesigned, but to do that we need to give up some of the focus on regulation and move toward an outcome-based approach that rewards more than it punishes.

Informal caregivers are key to this system. Without them long-term care would cost a lot more, but their contributions, and the significant financial burden informal caregivers bear, is not fully appreciated. Caregivers spend on average around $5,500 annually out-of-pocket providing care and lose some or all of their income from paid employment and future Social Security benefits because they work fewer hours.

With an aging population and fewer family caregivers available because of smaller families and more two-income households the need to support the informal caregivers who are available is that much more urgent.

The current move in health care toward more “patient-centered care” is important. But patients aren’t receiving care in a vacuum. Sometimes the focus on the patient does not “properly engage, educate, or support family caregivers or other informal care providers”.   Furthermore, the prevailing view is that being an informal caregiver is chronically stressful, bad for your health, and generally a negative experience. In this climate, how do we best support caregivers to do this important work?

Roth et al suggest that a more balanced view of the caregiving role may encourage more people to become caregivers and can help us better target services and supports to those caregivers who are most in need. To do this, they review a number of existing, population-based studies focusing on increased risk for mortality among family caregivers. The bottom line is that not all caregivers report significant strain from providing care and those caregivers are at no greater risk of mortality four years later than those who are not caregivers. Furthermore, five population-based studies found that, in general, caregivers had significantly reduced mortality rates compared to non-caregivers.

Although, I think this study suffers from some of the same problems they cite in previous studies, the authors’ point is well-taken. Taking a one-sided negative view of the effects of caregiving does not show the whole picture and existing research does not consistently or sufficiently control for confounding factors (such as evidence that older adults who become caregivers are healthier than same-aged non-caregivers). Viewing caregivers as resilient and capable as opposed to at-risk resonates well with the strengths-based approach of social work. Furthermore they can be seen as a resource. So, if the notion of patient-centered care is expanded to include whoever the patient identifies as informal caregivers (moving away from our narrow definitions of what constitutes family and who can be designated as a caregiver) and (this is key) there is reimbursement for caregiver interactions, then health care professionals might communicate with them more effectively, incorporate them more effectively into health care decisions, and make resources available to support them, including initial and follow-up assessment of caregiver needs along with patient assessments.

In terms of support, respite care is one of the most commonly requested types of caregiver assistance. It is important for reducing or delaying burnout and institutionalization. However, it is not always available and, when it is, eligibility is often tied to the health of the care recipient, not the caregiver. Often by the time caregivers receive respite services it is late in the process and they are in crisis. This defeats the prevention goals of respite.

The U.S. is behind other OECD countries in making respite care services available nationwide, although there are efforts in a variety of states. Oklahoma has taken a lead in respite care programs. In addition, in May 2014 they passed the CARE ACT that requires hospitals and care facilities to formally acknowledge and directly involve family caregivers in developing care plans. Other legislation around the country is trying to establish paid family leave, tax credits for caregiving, and other initiatives to support informal caregivers all of which are in line with national models in other countries.

Caregivers need both financial and supportive help. They need better tools and training. They should be paid for the care they provide and the wages they lose either directly or through cash benefits that go to the care recipient who then chooses who they pay for care. Family care should count as part of the initial care expended to establish eligibility for coverage of long-term care services.

The White House 2016 budget includes proposals specifically targeted to help family caregivers. These include:

  • $15 million dollars for a Family Support Initiative to ensure “the optimal deployment of public and private resources at the State and community level to assist family members supporting older adults and/or people with disabilities across the lifespan.” I confess, I don’t exactly know what that means.
  • $50 million in new resources for existing aging programs that provide support such as respite and transportation.
  • The Paid Leave Partnership that would pay up to half of the benefits and all startup costs associated with creating a paid leave program in up to five states. The grants can be used to cover family, parental and/or medical leave programs that provide up to 12 weeks of benefits.
  • The State Paid Leave Fund that will provide technical assistance and support to States that are building the infrastructure to launch paid leave programs in the future. Currently only three states offer paid leave programs.

This is a start.

How expensive is the welfare state anyway? And does it really matter?

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The expense of the welfare state comes up in all sorts of political and public conversations even if it’s not worded quite that way.  What to do about Social Security, Medicare, health care?  Make welfare recipients take drug tests?  Dock welfare payments from families who kids miss school?  They all have to do with money in some way, but are also code for ideologies and beliefs about who deserves help and how much the government should provide.  In the United States, the argument against a more universal approach to social welfare often comes down to money (at least on the surface).  Big welfare states are too expensive, we’re told.  I suggest that the money argument is a distraction from ideological differences that really underlie this ongoing debate.

Social spending includes things like old-age, survivor, and disability pensions; health care; family support; active labor market policies; unemployment; and housing. A number of studies that compare the cost of social expenditures across Organization for Economic Co-operation and Development (OECD) countries find that the expenditures in some countries (like Finland) are overestimated and in others (such as the U.S.) are underestimated because they don’t take into account taxation on benefits and private spending.

For example, one 2009 OECD report found that while gross public social expenditures for the U.S. (17.1% of GDP) were less than Finland’s (29.8% of GDP), the net total social expenditures were much closer (27.2% of GDP for the U.S. and 24.4% for Finland).  They account for this difference in three main ways:

  1. Finland directly taxes public social benefits at a higher rate – about 18% for public and 22% for private transfers compared to 6% and 12% in the U.S.  They also tax different types of benefits differently.  In Finland, pension transfers and unemployment benefits are taxed and social security is deducted, but at a reduced rate.  In the U.S., pensions are taxed at a reduced rate and unemployment benefits are taxed as earning, but social security isn’t deducted from either.
  2. Indirect taxes – the taxes we all pay on groceries, clothes, and other things – are different.  In Finland, the average indirect tax rate in 2009 was 20.8% compared to 4.3% in the U.S.  That means that the same amount of benefit doesn’t go as far in Finland as it does in the U.S.  OECD countries, like the U.S., that have low indirect tax rates also tend to have lower social expenditures.
  3. The U.S. has more tax breaks designated as being for “social purposes” than any other OECD country (at about 1.5% of GDP in 2009).  These include lower taxes on some sources of income or for some types of households.  They also include things like tax credits for dependent children that reduce taxes or exempt some from paying a tax and are intended to do the same thing as a cash transfer.  And they include tax breaks that are intended to stimulate some sort of non-governmental provision of benefits like tax exempt non-profits or better tax deals for private pension and health care contributions.  These last two play a much bigger role in the U.S. than in Finland where they are virtually nonexistent.

So, monetarily there are fewer differences in the amount of social spending across OECD countries than we tend to think. The differences are in the ways in which that spending is funded (indirect and direct taxes versus tax breaks).

But are these two means to an end equivalent? And are they really intended to reach the same end anyway?

It turns out that the mix of public vs. private spending can end up with very different results, especially when it comes to income inequality.  Countries like Finland, where the amount of public social spending is above average and where public spending is a greater proportion of the total, also have below-average income inequality. Countries like the U.S., with low levels of public social spending and where private spending is a greater proportion of the total, have higher levels of income inequality.  This makes sense.  Private spending like tax advantages toward pensions and health care are more likely to benefit those who start out with more money.  Private employment-related benefits (like tax exclusions for employer contributions to health care) only shift income among those who are or have been employed.  When social expenditures rely more on private pending than public, the benefits are stacked in favor of those who have more from the start and there are bigger holes in the safety net for the most vulnerable to go tumbling through.

The U.S. stands out as having the least efficient net after-tax social spending with both spending and inequality higher than all other advanced economies except for France which has higher spending and Israel, Turkey, and Mexico which have higher inequality.

Of course, there is all sorts of political freight attached to notions of income inequality and public vs. private social spending.  But there is also growing evidence that inequality has real consequences.  This is true internationally as well.  The U.S. has greater private spending on health care and education, but notably poorer outcomes in mortality and graduation rates.  For those who don’t see inequality as an ethical issue, maybe money will talk since these consequences come with costs.

 

Four Little Questions

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  1. What is your understanding of the situation and its potential outcomes?
  2. What are your fears and what are your hopes?
  3. What are the trade-offs you are willing to make and not willing to make?
  4. What is the course of action that best serves this understanding?

Could these four little questions – that appear and reappear throughout Atul Gawande’s book Being Mortal: Medicine and What Matters in the End – reshape end-of-life care as we know it? Surely not on their own, but the stories woven throughout Gawande’s discussion of the current state of medical care make a compelling case. These four little questions, after all, are not really so little.

We as a society are uncomfortable with death. That may seems like a silly statement to make. After all, do we want to really be comfy with the end of life? Well, perhaps not. But, the fact is it will happen to us all and our discomfort has made death a taboo topic of conversation. We don’t even like to say that someone died and instead say things like “he passed on” or “she is no longer with us”. Consequently, we shy away from talking about death even at those moments when it is most crucial. The amazing advances in medicine that can extend life, even beyond the point of truly living, allow us to avoid facing the reality of death and to become obsessed with longevity over quality.

Hence the four not-so-little questions.

I appreciated Gawande’s honest depiction of his own struggle as a surgeon confronting death with his patients (as well as friends and family) and his efforts to look for a better way. His concerns lead him to experts in geriatric medicine and palliative care, medical specialties that don’t just focus on treating medical conditions, but on improving quality of life. Ironically, their approaches often improve underlying medical conditions as well, at least for a time.

It was a palliative care specialist that told Gawande the four questions. Using the answers to these questions to guide treatment – even when the patient is not able to speak for themselves – gives them a measure of autonomy and control in the midst of limited choices. Asking these questions slows the process down and helps the doctor see the human being, not just the illness. It shapes the discussion in a way that is more meaningful to the patient and their family than a bewildering recitation of medical facts and treatment options. It puts these options in a patient-centered, person-centered context.

The results can be surprising. One story that stood out for me was the man who said, on the eve of a risky surgery, that he would be okay with being paralyzed if he could eat ice cream and watch sports on television – much to the surprise of his daughter. When the surgery didn’t go as expected and she had to make a decision on her father’s behalf, she knew what he would decide because she had the conversation with him. And, most importantly, it was different than the decision she might have made otherwise. It wasn’t an easy conversation, and she is a palliative care doctor who does this for a living. Imagine how difficult for the rest of us (doctors and family alike) who don’t even know what questions to ask.

I suspect that most of us give our doctors the benefit of the doubt. Even when I’m unhappy with the care I or someone I care about receives, I assume that they want what’s best for their patients. But their training is to fix problems, their orientation is to extend life, and the systems they work within are generally not set up to facilitate anything else.  These things need to change.  Sometimes (as with the very old), there is not a clear problem to fix.  Sometimes (as with the terminally ill) it is not fixable.  Being Mortal highlights for me once again the importance of interdisciplinary teams. (Cue plug for social workers here).

Social work training is rooted in person-centered, holistic care. While doctors should not be left completely off the hook and allowed to push these hard discussions off on social workers or others, having a social worker as part of the conversation with patients would help doctors manage the emotional and relational parts of these important conversations and decision making.

 

Article update: Implementing evidence-based practice in underrepresented communities

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I am a believer in the importance of social workers (and other health and social service professionals) using research evidence to inform their practice. That’s why I spend hours teaching reluctant social work students statistics and research methods and how to evaluate the quality of a research study. I am also straightforward about the challenges they will face in actually doing this. New research is published at a fast and furious pace and even a practitioner with the best of intentions can’t keep track of it all and keep up with already unwieldy caseloads and other demands of the job. Faced with the choice between helping a client in crisis and digesting the latest research on [insert your favorite problem here], of course we’ll pick the client.

Increasingly states mandate the use of particular evidence-based practices (EBPs), enacting laws that restrict state funding to programs shown to achieve particular outcomes. On the face of it this seems reasonable. After all, we want our tax dollars paying for services and programs that will work, right? (Do you see the ubiquitous but coming?)

But, mandating EBPs is fraught with a host of issues, particularly when providing services for people from underrepresented communities. An article just published in the journal Administration and Policy in Mental Health and Mental Health Services Research by Sarah Walker and colleagues from the University of Washington School of Medicine and School of Law highlights some of these issues in the context of behavioral interventions for American Indian and Alaskan Native youth.  The article presents results from a gathering of tribal leaders and representatives from various state departments involved with the Washington State juvenile justice system. The focus of the gathering was to inform participants about evidence-based practices related to juvenile justice and behavioral health and get their feedback about the practices and their implementation methods. The evidence-based practices presented were those eligible for state funding.

The issues that emerged are applicable for work with other groups as well. At the most fundamental level, research supporting many mandated EBPs does not include people from underrepresented groups. How then can we say that these practices are truly evidence-based for them? In addition, the outcomes measured, and therefore validated as the “appropriate” outcomes are determined by the researchers, sometimes with input from community members, but often not.  One of the themes that emerged in the study by Walker et al was respect for tradition including making sure that project outcomes align with those of the client or the community.

Many EBP outcomes may already be aligned with group values and needs. Other can be made to work with minimum adaptation. In reality, evidence-based practices are almost always adapted whether it is ad hoc or formal. From a researcher’s standpoint this is a headache, particularly in the initial stages of implementation. If practitioners adapt an program as they see fit, it compromises the research design and inhibits are ability to say that it was actually this intervention that caused (or failed to cause) change. But once some solid evidence supports a program and it begins to be used more widely, expecting no adaptation to occur is simply unrealistic and ignores the complexity of the various contexts in which EBPs are used. So why not encourage adaptation and provide tools for it to be done in a thoughtful way?

Walker et al note that when done thoughtfully, adaptation should not be a onetime adjustment, but a process that happens from the initial planning to implementation to efforts to sustain the project. Changes may need to be made in when, where, and how information is shared – for example, integrating information sharing into already existing community gatherings. It may take longer to engage some communities and explore the options. It may be important to integrate existing traditional programs into the EBP rather than replacing them. Methods of implementing the program may need to be adapted as well. For example, Walker et al found that a common theme discussed was the importance of providing services at home for logistical reasons, but also because of tribal values around family. They also discussed the pros and cons of non-native therapists and the need for them to have credibility within the community. It may also be necessary to broaden enrollment criteria to ensure sufficient numbers. Results from the gathering suggest that developing tribal consortiums and learning communities is one way to address these adaptations and provide a mechanism to help sustain programs. Such consortiums are already part of collaboration among tribes in this context. Other methods may be more appropriate in other contexts.

Really, this is all just good social work practice and is in line with how I and others teach evidence-based practice – integrating the best available research evidence with the needs and wishes of the client, community, or organization and with our clinical judgement as a professional; working with the client or community to decide how best to move forward; and checking in regularly to see how its working and what adjustments need to be made. Of course, that’s all easy for me to say sitting here snug behind my desk with a snoring cat on my lap. Putting it into action on the ground with funders, agencies, clients and other stakeholders having a say is a different matter altogether.

Rethinking medical care for older adults

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Louse Aronson, associate professor of medicine at the University of California San Francisco, says it better than I can in her just published article in Health Affairs. The case she eloquently describes is a perfect example of what can happen when the complex issues faced by an older adult meet our fragmented health care system. Two key points that resonate with me:

Providers (whether it’s physicians, nurses, social workers, or others) are not universally required to have geriatrics training. The assumption is that “adult” medicine applies to older adults, too. Older adults, however, have different needs that require an individualized approach that coordinates care across different systems and focuses on health, not medicine.

The current reimbursement system doesn’t pay (or doesn’t pay adequately) for many of the interventions for older adults that we know work – for example, working to reduce falls, follow-up phone calls to address issues that may not require a visit to an office, or phone calls and meetings to coordinate with caregivers, social workers, and others. Without this level of coordination, the older patient spends unnecessary time and money shuttling between specialists and taking multiple medications that, at best, are unnecessary and can often do more harm than good.

Rather than focusing on diseases, the health care system (including training, reimbursement, infrastructure, etc.) should focus on a holistic, person-centered approach to care.

 

Article update: A look at the Affordable Care Act

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The Affordable Care Act is the most comprehensive reform of the United States health system since Medicare was established in 1965 under President Lyndon Johnson. The US is way behind other developed nations in providing universal health care coverage and our health care system is  notable for its inequities and inefficiencies.  The ACA is only a small step toward improving this and changes and challenges in its implementation have weakened this effort. At the same time, there are innovations in the law to increase quality and cost control that, if successful, can perhaps inform the efforts of other countries struggling to maintain coverage in the midst of economic downturns. A just published article by John McDonough (Harvard School of Public Health)  in a new journal called Health Systems & Reform does a nice job of laying out the basics of the ACA to date.

The ACA includes 10 Titles covering access, quality, and cost control.  (You can read the full law here if you are so inclined.)  Efforts to improve access through health insurance exchanges and other provisions have been most publicized. But provisions aimed at improving quality and cost control are less talked about. They are, however, extremely important because health care spending in the US has increased way beyond that of other developed nations over the last thirty years, but our outcomes are not comparably very good. In short, other countries are doing better in providing quality health care to a larger proportion of their citizens with less money.

To address this, the ACA moves health care financing away from fee-for-service to a system that rewards providers for improvements in quality, efficiency, and outcomes. This includes incentives for improving care collaboration across providers and penalties for hospitals with high rates of 30-day readmission and hospital-acquired infections. Other cost control efforts reform or create structures to prevent fraud and abuse, emphasize health promotion and disease prevention, and reform practices in the development and testing of drugs and medical supplies.

It will, of course, take time to fully understand the impact of the law, but McDonough cites preliminary data from a variety of sources. For example:

  • According to the Commonwealth Fund an estimated 20 million Americans obtained coverage under the ACA as of May 1, 2014.
  • Gallup surveys indicate that the rates of adults 18 and older who are uninsured dropped from 17.1% in the fall of 2013 to 13.4% in April of 2014. The drop in uninsured was higher for African Americans, Latinos, and people who are lower-income.
  • Excluding older adults, the rates of uninsured dropped from 21% in Sept 2013 to 16.3% by April 2014 (a decline of 10.3 million people) (from Harvard School of Public Health and the U.S. Dept. of Health & Human Services).
  • On the not so positive side, the Urban Institute has noted a growing disparity between states that are expanding Medicaid vs. those that are not. In Sept 2013, 49.7% of uninsured adults lived in states not expanding Medicaid. This increased to 60.6% by June 2014.
  • Hospital induced conditions such as adverse drug events, infections, or falls decreased nationally by 9% and Medicare 30-day readmission rates decreased by 8% (from 2011-2012 data from the US Dept. of Health & Human Services).
  • Prices of health care goods and services and per enrollee spending on both private and public health coverage have been rising at historically low rates (from Bureau of Economic Analysis). At this point, it’s difficult to tell to what extent this is a direct or indirect effect of the ACA, but the law has not drastically increased health spending as some predicted.

And, the debate, rages on in Congress, the Supreme Court, in the presidential elections to come, and over family dinner tables.  As McDonough notes, health reform in the U.S. has always been politically divisive, but the level of politicization around the ACA has been particularly intense. The Kaiser Family Foundation has extensive resources on all things health reform including this interactive tracking poll looking at public opinions of the ACA from the summer of 2011 to January 2015. With some blips along the way, respondents have been roughly evenly split in terms of reporting whether they are favorable or unfavorable to the law. But not surprising, the picture changes dramatically when you look at Democrats vs. Republicans with the majority of Democrats favorable and the majority of Republicans unfavorable. Interestingly, the results are not so clear cut when respondents are asked about specific portions of the ACA.

The other important point McDonough raises is about how complex the U.S. health care system is and the influence of past policy decisions on creating that complexity and constraining decisions moving forward. He gives the example of Medicare which began with Part A (for hospital services), then added Part B (for physician services), Part C (which allowed private insurers to participate) and Part D (for prescription drug coverage). Each adds a layer of complexity that, I would argue, a truly comprehensive health care reform should be able to address. But, alas, that’s not the way our political system works.

It will be interesting to see how implementation of the ACA continues to unfold moving forward.