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Archives for March 2015

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.