Healthcare That Fits

As part of my research focus, I spend a lot of time thinking about healthcare and what its purpose is.  It seems to me that healthcare (and therefore health itself) is only useful insofar as it generates happiness.  If being healthy (or making someone else "healthy") doesn't translate into any measurable form of improvement in the experience of life, then it doesn't really accomplish anything meaningful.  Now, there are certainly situations where "enduring" good health or its necessary treatments or lifestyle changes may not bring immediate enjoyment...but, often these sorts of interventions permit the sorts of results patients want in the future--the ability to play with your grandkids, the opportunity to walk your daughter down the aisle, etc.  Distinguishing these cases and indications is essential, and carefully weighing the evidence of what is and is not likely to have desired effects is central to the practice of high-quality care.  Determining what fits who is one of the biggest challenges in healthcare, and it requires intimate understanding of what it is that makes our patients tick.

Americans spend more money on healthcare than anyone else in the world, but we aren't the happiest people in the world (not even by a long shot).  Then again, we aren't the healthiest either.  Somewhere something is getting lost in translation.  Medicine doesn't fit people like it's supposed to.  I think part of this stems from the fact that healthcare is slowly losing sight of its purpose.

According to the Bureau of Labor and Statistics, healthcare is a "service-providing" industry.  Sometimes it seems more "goods-producing."  We do not often think about health services as a resource designed to meet our needs and life desires.  Who thinks of their physician in the same way they think about their auto mechanic or their hair stylist?  And yet, healthcare, like these other service industries, exists to meet the needs of its consumers (i.e. the patients).  But I think anyone would balk at the suggestion that their mechanic could impose whatever repairs he sees fit or that their hair stylist could simply choose a haircut that matches his or her taste without even considering the preferences of the one forced to wear it!

Minimally disruptive medicine (minimallydisruptivemedicine.org) is one part of the solution to this problem, as it strives to remove unnecessary and useless care that only adds to patient burden.  It also seeks to maximize patient capacity to be well, such that simply being a patient is not the end in itself, but is a means to an end that brings value to a patient's life.

I have become increasingly familiar with the role of health or wellness coaches (and, more broadly, life coaches) can play in helping to achieve these goals.  In many cases, the sort of holistic evaluation and approach to well-being that coaching can provide is of far more value than any diagnostic test or intervention traditional medicine can offer.

Case in point.  My grandpa has had a number of health issues develop over the last decade or so.  His prescriptions and various medical appointments and evaluations help to bring some degree of health benefit, but they do not bring happiness or any value in regards to his quality of life.  Thanks to the accurate perception of concerned family members, however, he was given a couple dogs that have absolutely changed his outlook on life.  They've brought meaning, joy, and purpose to his life in a way that traditional medicine never could.  Identifying the things that bring meaning to patients' lives is essential to achieving the outcomes we desire.  I am excited to think about this more seriously and generate more formal approaches to this type of patient assessment.  I am interested in people's thoughts.

Hospital-I.T.Y. (Synopsis)

Here's the rationale for Beth and I's new hospital ministry: (copied and pasted from our ministry proposal)

The inspiration for this ministry comes from our understanding of God’s special love for the sick and the hurting.  From Isaiah 61, we know that one of the evidences of God’s Kingdom on earth is the binding up of the broken-hearted.  This fallen world is full of hurting people, and just as Jesus sought them out and restored them in His ministry, we are called to do our part to “restore our broken world” and show God’s love to those that need it most.

This ministry has two general purposes.  The first purpose is to show God’s love through Christian hospitality, especially to patients and families that are visiting Rochester from afar and are separated from their normal support system.  This may include anything from a friendly chat to a home-cooked meal to a parking spot to a spare room, depending on the situation.  The second purpose is to provide spiritual support and understanding to those that desire it.  This will depend on the situation and on interest but can include everything from a short prayer, to a listening ear, to a formal family support group and weekly devotional.

We believe this ministry fits with the CCC DNA and the church mission in obvious and important ways.  We believe all Christians are called to reach out beyond the walls of the church building, to love in radical ways, and to make the gospel of Jesus Christ attractive to our broken world.  We believe this ministry can restore people while bringing glory to God and declaring the presence of His kingdom.

1.              Who is the intended audience for this project?

We believe that the patient’s primary source of comfort and support often comes from his or her family and medical providers, assuming these people are present and that the dynamics are functional (as is the case in most Christian families).  In these cases, our primary focus will often be on the families, who are frequently hurting as much or more than the patient but (especially when coming from afar) lack necessary support, feel lonely, and struggle with issues of understanding.

2.              Will you be recruiting a team of people and how will they be selected?

We would be thrilled to welcome anyone with a heart for the hurting into this ministry.  Anyone could potentially play a role, depending on his or her comfort levels and spiritual gifting.  The size and scope of this ministry will be directly proportional to the number of people who are interested in serving in it.  It would be nice to have a registry of people willing to be contacted for hospitality reasons (making a meal, offering a spare room, etc).  People with clinical backgrounds are particularly well-suited to make hospital visits without violating any rules or norms, whereas people with the gift of teaching could take turns leading support groups at each hospital, etc.  Basically, the bigger the team, the more people we can open our services up to and, hopefully, the bigger the impact.  There are numerous resources on hospital ministry that can be made available to anyone interested.  A training workshop would likely be in order for those particularly interested in bedside hospital ministry.

3.              What is the process for ministry engagement?  Timeline?

This ministry can begin effective immediately.  At this stage, it is only the two of us, so we simply can’t open up our services to every patient and family in Rochester, as much as we’d like to.  It makes the most sense, currently, for CCC to refer patients and families that they are aware of to our ministry.  Depending on the level of ministry involvement and the closeness of the patient relationship, it is reasonable for each ministry team member (couples counting as 1) to carry a “case load” of 1 to 3 patients.  If the ministry really takes off, we would like to make the Mayo chaplains aware of us so that they can refer appropriate patients and families as well.   Perhaps by summer 2013, it would be nice to start up a family support group that meets within the hospital.  This can be advertised within hospital chapels.  Because the hospital population is constantly overturning, these meetings can be a recurring devotional and discussion of 3-4 topics (worry/uncertainty, suffering, comfort, etc).

4.              How will success be measured upon ministry completion?

We will always have the sick, so it’s hard to imagine this ministry reaching a state of completion.  If this ministry is truly led by the Spirit and is consistent with God’s heart for our community, then we should expect spiritual results.  I would hope, as it has been our experience, that the ministering will gain as much comfort and insight from this ministry as those being ministered to.

Update: July 1, 2013

Let's try to get everyone up to speed with what's been going on with me over the last few months:

Work/Research:  A lot to report here.  I'm starting to find my groove in health services research.  I mostly focus on figuring out ways to make healthcare make more sense.  My unit works on erasing the disconnect between patients and their clinicians.  I try to make health fit the goals of the patient and empower patients to accept nothing less.  This means I study a lot of things, but especially the way patients and clinicians communicate.  I'm looking at this critically right now in the context of communication with cancer physicians and studying the concept of "shared decision making."  Beth and I just returned from a conference in Peru where I was able to sharpen my understanding of this better.  You can watch some great keynotes about this here: http://isdm2013.org/video-archive/
My mentor, @vmontori, is promoting a concept called "minimally disruptive medicine."  I will be blogging about that some here...and some here:  http://minimallydisruptivemedicine.org/  You can also follow my musings on this and other things on twitter @aaronleppinmd  I start my Master's classes officially next week.

Life/Health:  Things are about as good as can be expected.  The GVH left my gut and moved to my lungs.  It got pretty bad there for a bit and I spent a few days in the hospital.  My lungs took a bit of a permanent hit and I probably won't ever run a marathon, but with the help of some high dose steroids I'm breathing pretty comfortably now.  I'm well enough to work at least and well enough to enjoy a trip to Peru.  Beth and I were able to go paragliding, take in some Peruvian cuisine, and have a wonderful time on the beautiful Pacific coast.  My lung capacity precluded a trip to Machu Pichu but it was a blast regardless.  We also celebrated a year of marriage about a month and a half ago.  Beth also completed her first year of teaching and is enjoying her first summer vacation!

Purpose/Ministry:  A fair amount on this front as well.  Beth and I completed a course at our church to identify our spiritual gifts, talents, and heart tendencies.  Ultimately, we felt God's leading to start a hospital ministry directed toward helping patients and their families deal with the adjustment of serious illness.  On the most basic level, we want to provide Christian hospitality and support, especially to folks traveling to Rochester from afar for care.  We also want to provide spiritual direction and understanding as much as one might desire this.  We are approaching it humbly and with willing hearts; we feel God has given us a lot to draw on here.  I will try to post updates related to this ministry that will be encouraging.  We're calling it "Hospital-I.T.Y."  (Intent on Trusting You).

Okay, that's the skinny.  Keep posted, friends.