Only Anecdotal

No numbers, just stories

Archive for the ‘consumers’ Category

What We Really Need

leave a comment »

The last week was a sea of phone calls, visits, and trying to stay organized and focused. I was also trying to finish long-overdue reports. It is an arduous process, namely because the data we collect does not match up with the data that is requested for one particular program’s report. Therefore, instead of hitting a few buttons and spitting out data, I need to go back and do it by reading notes and making tally marks–remembering in the process the details of daily life of every person I saw during the quarter. Sometimes it kind of gets to me.

It is the nature of the job that everyone I see in my work is in some sort of crisis situation. From the hospital (where I often meet people for the first time), they may often go to short-term rehabilitation hospitals (or to nursing homes that fill that function), and then home by the end of my time with them. The best-case scenario, I have to admit, is when a person never wants to talk to me again.

It happens fairly often. An individual is in the midst of catastrophe at one moment, but it is over after a time. Life goes on, and rarely does anyone want to remember any details from the lowest point of a tough spell. When someone says, “No, we are all set,” I am happy about it.

But this is not always the case. Many people simply die.  Or sometimes I am unable to reach people for months, but they turn up years later, with more problems, greater financial burdens, and perhaps loss of hope. Other times, they hang on, calling often for some sort of help, hoping that among my “options” is one that will actually remove the barriers that keep them so far from being the people they are, or were. Sometimes there is something that does help. Sometimes I see people I met previously, sitting in a restaurant, laughing with friends–when months earlier they were, say, in a nursing home. This is a good day. Most of the time, the best I can do is listen, and not lie when I say that itwilltaketime or youdonotqualifyforthat or youaredoingallyoucan. My role is limited–I cannot be a companion, or even a friend–as so often becomes quite obvious.

I have been thinking of this quite a lot lately, that going into people’s homes, entering into moments of great change with them… it is so difficult to remain neutral and unattached, but it is all in the name of survival with so many people to see. It is also what we are trained to do, in the name of professionalism. I don’t mean that we are expected not to care. We are just expected to remain objective and fair. It is a tough balance to do that, and then also to remain healthy ourselves.

I have been on the other end of all this support, especially when my boys had in-home services. At times, my family life revolved around whichever therapist was due to show up that day, sometimes (when we were lucky) joining another support person who came everyday. From the receiving end of these sorts of in-home supports, I have signed agreements of understanding that the relationship is limited, and not permanent. People who came to help my kid could not accept an invitation to bring their own families over for a friendly dinner with us later on, no matter how close we felt to them, no matter how well they fit into the fold of our family. It is dramatically difficult to be in this situation, to need someone hands-on for such enormous quantities of time (time that then cannot go toward reaching out to make a new friend, who can actually be a real friend–and isn’t it ironic that everyone keeps telling you to do this!), and then to say goodbye.

It is difficult, as a professional, to sense the intense isolation, the inadequacy of things like transportation, to see the gaps in much-needed assistance, the fear in people’s faces as you close the door behind at the end of the day–and then to walk away, to have to refuse to give that ride, to stop off and run that errand, to spend a little extra time when others–many others!–are waiting for not-en0ugh-help. It is sometimes a guilty feeling, too, to be relieved to get away from the people who try our patience and drain us… They are nearly always lonely, too. The health risks of loneliness have been documented (http://www.ncbi.nlm.nih.gov/pubmed/20652462), but we have yet to figure out a solution to the isolation, other than institutional care. There must be a better way to preserve individual choice, and yet at least support the means for people to sustain friendships and not just caretaking relationships.

So we leave our home visits, and we see the pain in the lack of connections for so many of the individuals we see. Sometimes we feel it ourselves, in our own desire for meaning, but ultimately in our utter inability to supply the one thing that people need the most–which is one another.

Written by Only Anecdotal

10 Feb 2014 at 8:08am

Imagine

leave a comment »

In the time since I last wrote here, the world has changed.

We have embarked on so many new adventures in the agency where I work, in the state, in the country… It is all a bit baffling to see the ideas so long expressed coming to fruition now. I find myself once in awhile holding onto my cynicism like an ugly old jacket that served its purpose well enough to protect me back in the day, even if it never quite fit. Same with our healthcare. Hard to believe we might be able to order something tailor-made, but right now I am in the ordering business!

Last week I went out to do my first long-term services and supports (LTSS) assessment for the One Care program–Massachusetts’ demonstration healthcare program for people ages 21 to 64 who are dually eligible for Medicare and MassHealth (Massachusetts’ Medicaid program). Since people in this age group only receive Medicare after they have been on SSDI (Social Security Disability Insurance) for two years*, we know that their disabilities are significant and long-term. MassHealth is triggered also by low income and/or disability. Some may buy into the MassHealth system, but most would only do so to maintain some sort of long-term benefit, such as personal care attendants. Either way, we know that dual-eligible individuals often struggle with day-to-day life. While it may be an illness or disability that has made daily activities difficult, it is also true that for many people, this lack of support in the day-to-day needs becomes a downward spiral into isolation and worse health.

The unmet need for long-term services is hellishly familiar to those of us who have worked or lived with disability for any length of time. I personally have clamored for years about what a great world it would be if we could embrace care coordination, medical home, consumer control, participatory healthcare, collaborative decision-making… I have had my mantras, my rants, my moments of frustration.

And now.. I have had the experience of sitting in a consumer’s living room, asking the individual what he needed in his daily life. He told me, told me what he does, what is hard, and I came up with a few creative suggestions for things that may make these things possible.. or easier. I have absolutely no idea whether a healthcare plan is going to recognize the tremendous benefit of, say, a gym membership and transportation to get there. Or support for companion pets. Or even homecare–not so easy to get that sort of help before a certain age. But I am writing it down, recommending it strongly, and ready to explain why.

This first assessment was difficult for me, mainly because I am so much in the habit of thinking two steps ahead, to what is available instead of to what is really needed. I find myself frustrated at my own realization of how much I had adapted to this system of thinking–a system that I have complained about for so long. I have spent so many years hitting my head on the wall trying everything I can possibly think of to get someone desperately needed help (and much of this help being for my own children) that I find it incredibly hard to believe that there is a program where I can write down, “Julie X. needs Y, because it will help her health in ABC way…”, and Y will be granted (I believe the preferred term is authorized). I have joked for a long time that my requisition for a magic wand is on hold, but by golly, I am beginning to wonder if that purchase order did not just go through.

So, when I send in my most recent assessment, with a few very reasonable recommendations that may be completely life-altering for that individual, I am going to hold my breath, cross my fingers, and try very hard to believe that this is really true.

I once saw a woman who was facing enormous challenges in getting any sort of support approved. It was very difficult for her, she said, not to compare notes with her friend from home. Her friend had been misdiagnosed with cancer, she told me, and the healthcare system of her native country had sent her friend for a week to a spa for emotional recovery. When her friend arrived on the train, an attendant was waiting to help with her wheelchair and luggage, and a ride to the spa.

The woman I was visiting looked around her now-cluttered dining room at her own unassembled monitors, and her calendar, and her list of appointments and medications she could barely remember, much less afford.

“This is barbaric,” she told me. It was hard to argue with her. She was sick, and tired, and had trusted enough to go through with preventive surgery that made her feel much worse than she had felt before–and this was months after she was told she should have recovered. She was at a loss to figure out how she could care for herself and her home now. Before her surgery, she had still been mowing her own lawn.

Imagine that this were different. Imagine that she had understood the affect that the surgery might have had on her life afterward. Imagine that she had still had the surgery, and that her doctors had planned for the hands-on support at home that she really needed to make a good recovery. Imagine that our biggest challenge in meeting need were simply a matter of figuring out how to schedule it all appropriately, and not whether it is even possible.

Imagine this demonstration works, and spreads to all of us in our new healthcare system.

I am ready to start imagining. Are you?

Written by Only Anecdotal

28 Jan 2014 at 1:39pm

Process

leave a comment »

This week I have been thinking a great deal about the process of many things in life, things that are in theory quite simple, but are forever made difficult by what we have to do to follow through. I wonder how much time goes into this, how the process ends up being what it is.

Let’s start with Target.

More specifically, I point to the Target dressing room–at least the one in Framingham. My daughters were trying on shorts, and though we have tried on clothing there before, the girls forgot and headed back to a room without stopping.

“Wait!” called the attendant, who was rummaging through heaps of clothing near the entrance to the fitting rooms. “You need to take a number!”

The girls went back, and the attendant counted through the pairs they had chosen, handed them a number.. just like at Marshall’s, only not obvious at all.

I waited while the girls were in the fitting rooms, and watched as countless other people pushed carts through the narrow space that linked two departments to the dressing rooms. Every single person who went in was confused. For some, it was the most obvious place to go from one part of the store to the next. Others wanted to try something on. But what is the process? As the rooms became crowded, the attendant became more and more agitated, shouting, chasing down customers to make them get a number.

I felt sorry for the attendant. It seemed so obvious that the process was making her life miserable, making things hard for customers, and so easy to solve. All that the store needed to do was to put up a sign, indicating that customers should check in first. In other stores, the dressing rooms are set up so that it is impossible to go to the changing area without being stopped first. In some places, no one stops customers from trying on clothing in a private stall. In some places, an attendant has to unlock the doors. But when no one knows what to do, tempers can flare.

So, this is Target’s clothing department, which–we hope–is a relatively non-urgent area. But consider the medical world, where no matter the level of urgency, the level of stress is significantly higher than any retail experience.  Or my service-oriented world, where people look to us to help them figure out how to find long-term supports. These are significantly more life-altering experiences than any clothing purchase. But the process to getting help is even more confusing. If it weren’t, quite honestly, I would not have a job (or at least, not this job).

The thing we have to remember in our own individual worlds is that we are here everyday, and have come to a certain comfort level with the way things are.

So, we forget to step back and remember how bewildering it has been to us to enter a new and strange place, like an emergency room–in an emergency. Or even how it feels to go apply for food stamps, when we need them badly but feel ashamed to ask.

I have a son with autism, and was always intrigued by the oft-used strategy of “social stories”–scenarios that explain step-by-step what to expect in certain situations. I have thought of this often, not only for people with autism, but for all of us. How much clearer life is when we can step back and focus not on whether we are adapting properly to the culture of a situation, as much as successfully accomplishing what we set out to do. At times this is critical, life-saving.

But more than expecting people to adapt to us, I am thinking lately more about what we can do as service providers to simplify what we do, to make our work more transparent–and in fact, more simple for ourselves, as well.

Not rigid–not incapable of tweeking or allowing for the unexpected. In fact, easier to tweek, more resilient.

It starts the moment we walk in a door, or place a phone call, look at a website… How does it look? How does it feel? How does that feeling affect our interactions with the individual? Are we attracting only certain types of people because of the environment we create? Do our unseen barriers shut out others?

Change both in healthcare and in services is on the way, whether we like it or not. Might as well embrace it, I say.. And I mean this. This is the opportunity we have to let consumers guide our thinking on what we as professionals do. Are we doing all we can to begin from a place of excellence? As I see it, the work we do can only improve, the trust we inspire can only be stronger, if we make our process clear from the start.

So.. I have arrived at the emergency room. How am I triaged? Who has priority? What can I expect?

A navigator stationed in the waiting room could make an enormous difference. Snacks for tired children. Free coffee. Obvious signs for the bathroom. Estimated wait times. But above the fluff, and most important: tell me what to do, and whom to tell, if my situation changes while I am here. Is there a sign explaining this? Can I understand it?

And when you move me back to a room, do not just leave me there to guess, and worry. The process of the emergency room is sometimes as bad–maybe worse–than the injury that prompted the visit.

A service agency can clearly display its signs from the street. A waiting area can be friendly, welcoming, non-threatening, but professional and serious. Does your name tell me who you are? Give me informative literature. What is the mission? How does a person get help? Is it okay that I just walked in? Explain the process. Is it still confusing? Can someone talk to me now? Maybe the process needs a change.

Just as great design can improve our experience of a beautiful home, design of our process can improve the good work we do. Let’s step back from our busy day-to-day, and just consider this, walk in our doors and think of how it all feels to the people who seek our services. It matters.

Written by Only Anecdotal

12 Aug 2013 at 10:52pm

Marathon

leave a comment »

As the helicopters and police cheers roads  gathered here In Framinghaam, it was thrilling, as it always is, to watch the  racers speed past.

This year, of course, is different. It will never be the same. .

A life can be so radically altered in a heartbeat. We all know it, and yet we do not. We do not want to believe that evil is behind it, certainly. And yet, sometimes it is.

I think now about the families, the wounded, those who saw too much, those who lost so much. Strength, and love… We need this, need it so much in this world.

Written by Only Anecdotal

15 Apr 2013 at 11:47pm

Why Am I Waiting Here?

leave a comment »

Back last fall, when my mom had experienced another frustrating exchange with her primary care physician, she announced her plan of action.

“He never listens. I am going to bring this up at the next appointment.”

At that appointment, my mom swiftly asked her doctor, “Do you like me?”

I was taken aback by the question, and I believe the doctor was, as well. In talking to someone else about her concerns, my mom had learned of personal tragedies in her doctor’s life. Perhaps that explained his inattention, she thought. Or maybe it was true that he just didn’t like her much.

My mom was a difficult case, in many ways. An order to cut back on salt that she received in the hospital seemed so overdue that we wondered if it really was the first time she had heard it. She had given up smoking, albeit pretty late in the game. Her lifestyle was not an active one, comforted as she was by being home, immersed in a book,  or Downton Abbey… damned be exercise. Noncompliant, I am sure.

But aren’t we all? I mean, really. There is such a big relief in getting past that encounter with any authority… you know? those days, or weeks, behaving as we are supposed to… not necessarily to be healthier, or better in some other way, but to avoid the scolding (or worse). And then, we walk out, free at last… this is the problem with the relationship that even entertains the notion of  “compliance”.

And as I have said so many times before, compliance may be more a question of feasibility. If an individual cannot afford the prescribed medication, how will he be able to follow the doctor’s orders? If she cannot get to the doctor’s office because a ride never shows up, how can she avoid being a “no-show”? If I do not understand why you want me to change a habit, if the reasons you give me seem so intangible, why would I give up something I love, or start something I dislike? And speaking of this, why should I trust you at all?

I am very sure–have felt it myself at times–that what doctors perceive as noncompliance may indeed be just that: stubborn refusal to follow orders. In my mom’s case, I know that it was hard for her (though she did it anyway) to make the trips to the lab for endless blood tests for a doctor who seemed to dislike her, and who also seemed to have no notion of why these trips into the lab were so taxing on her. It is hard, after a bad–or even traumatically pointless–experience, to return to the doctor who started it, and have faith in the advice (or orders) that this doctor, or any doctor sometimes, hands out.

It is clear in this year that the climate is changing enormously. There is a much more noise now about the need to take the consumer’s point of view seriously. Is it real? Slowly getting to real, yes, I think it is. How can we make healthcare easier? How can we deliver care more conveniently, and effectively, not just for the professionals, but for the people who seek the care? I see people from the home care world now popping up at technology-related events where I never saw them a year ago. Social workers will cover the hospital not just during weekdays, but at night, on weekends, so that people who end up there will always have the opportunity to talk to someone about the realities of life, no matter when they are in the hospital. Can we afford continuity of care? I hope that we see the error of years of neglect, at the real costs of constantly cutting out the human contact in favor of the urgent, impersonal procedures. It is time that we need more–time for listening, and for actual, physical help–and smarter ways to figure out how to create more connections, not fewer.

Written by Only Anecdotal

11 Mar 2013 at 10:21pm

Sticks and Stones

leave a comment »

The man was nearly sixty years old, a generous guy with a productive life. He loved his family, and enjoyed his work at the local supermarket. But there was one thing that brought him to tears the day I met him: the R-word.

I do not need to repeat the word. He told me he was “in the slow classes at school”, and recalled the habit he developed so long ago of hiding in the bushes after he got off his bus. It was only a short walk home from the bus stop, but best, he said, not to have to walk in front of the bullies who taunted him with that word. He had heard it again recently, from someone who had hurt him in other ways. He said that hearing that word again brought back a lifetime of pain, pain that he had escaped largely in the adult world, but not without some journeys into worlds with alcohol and other distractions.

The word was more than a word, of course: it was a way of limiting him to a certain place in this world. The fights he is fighting right now are all around that. He wanted to make decisions about where he lives, whether he walks or goes by bus somewhere, who his friends are. And everyone “worries.” A diagnosis of mental retardation implies a certain need for safeguarding. And this man did not want to be “kept safe”. He wanted to go on living the life he had lived before.

Words can hurt, just as badly as sticks and stones. Worse.

But it is not only the obvious slurs, the outmoded names that differentiate people who have faced discrimination. Any diagnosis can limit, in its narrow description that reduces the person to the medical condition. We seek some way to order the chaos that being human presents to us, and in some ways it is helpful, helps us chart a way through unclear paths.

But a diagnosis is only as good as a vague road map; it does not show us who a person is, or how the medical conditions may affect the life.. or what the life is really like at all. Without consideration of the whole person, that clear path on paper may turn out to be much bumpier and less predictable than we want it to be. It may also exclude joy, and hope.

I hope that as we shift focus from a system of medical management to an actual health system, we fight the urge to categorize people as we categorize disease. I hope that we can remember the power of words, and the danger of reductionism, the pain and indignity of dehumanization.

Written by Only Anecdotal

4 Mar 2013 at 8:11pm

Experts

leave a comment »

As I was driving to a meeting last week for the Dual-Eligible Demonstration Project, a man stood out near the stoplight. He was holding a sign, “I do not drink. I had a stroke and am homeless.” I nearly picked him up and took him to the meeting.

His story–the story reported on his sign–is far from unusual in my world. But it is unusual enough that the experts who treat strokes as an acute medical event still fail to understand the repercussions of health conditions on everything else in life–and likewise fail to understand the effects of everything else in life upon health conditions.

I am not talking about behaviors that are within an individual’s control; I am referring more to the chronic situations that come about first because of that acute medical event, and the difficulty not so much with the illness or accident itself as with the struggles in day-to-day life afterward.

The vision of projects that attempt to coordinate care for dual-eligible Medicare and Medicaid recipients makes a lot of sense, and could allow for the flexibility that can make an enormous in the quality of life of those individuals, and hence, in health outcomes.

But flexibility comes only when there is an understanding of the full picture of a person within the context of life, rather than within the context of a healthcare setting. This is where expertise of assessment comes into play, and where I fear that we are in real danger of getting tripped up by that very definition of expertise.

What is an expert? I see the established healthcare’s system respect for degrees and licenses, and see a structure that is resistant to accepting the expertise of the individual receiving treatment–except, sometimes, within the context of that treatment and the immediate needs around it.

It is not enough to share decision making, or to create a participatory system. More than that, the entire system needs to be flipped where the expertise of lived experience is valued as much as the expertise in the medical field. That clinical expertise is essential, of course. But it does not outweigh the practical aspects of life and the necessity of understanding how life changes all around when an individual’s health changes–and what can be done in all respects to improve the situation. We joke about a school of hard knocks, but the degrees we receive from life are just as valuable as those that we receive from studies within a well-established hierarchical system.

Part of the difficulty comes, too, from the harm that has come from years of medical arrogance. There have always been caring, wonderful medical professionals, and there always will be. In spite of any individuals, though, the power dynamic has allowed an enormous abuse, particular of people with disabilities, whose medical status amounts on a systemic basis to a problem either to cure or to ignore. The harm of this attitude is that mistrust of that system leads to mistrust of individuals–particularly in times of change where the powerful name the game–and where that power base remains so heavily weighted within the existing paradigm. More mistrust leads to defensive tactics, and to cynicism instead of listening, understanding, and working together.

Can the paradigm really shift in favor of the consumer in this new age of healthcare? I don’t know. I see vastly different attitudes about health and medicine in general in many other countries, where a broader range of health seems to be covered. But culturally those attitudes are so enormously different from the way we approach life here in the United States.. and we may not want to pay the taxes necessary to support such systems, even if we could accept that level of overt governmental control over our healthcare. But more flexibility? is it possible? Can we shift our system of medical care to one of health care, of care for people, that works, that truly supports the value of life, as is lived, itself? Time will tell.

Written by Only Anecdotal

25 Feb 2013 at 10:12pm