Recognizing Culture

Hi Friends,

Ironic that my last post was about writer's block! I have been working through some of that with a new book I am co-writing. It's called "Getting Your House in Order" and it addresses some specific needs of African Americans facing end of life and healthcare decisions. Below is my opening thoughts about culture and how it informs us in ways we may not even recognize.

I hope you are all having a healthy and happy holiday season! Much love to you and yours!

Tiff

Culture. I have heard this word so often but I never took the time to stop and really think about what it means. When we use this word we might be referring to cultures of countries or certain large groups living within those countries. In the US, we often refer to "African American" or "Latin American" culture when we are trying to describe a certain section of the US American population. In some contexts, this may seem to be synonymous with stereotyping and add to the feeling of disconnect between a sub-culture and main stream "America."

In the proper context, however, framing things in the light of culture is a sign of respect and understanding. To acknowledge that not all communities of people think, act and view the world in the same way is the first step in giving and receiving the respect we all desire and deserve. Before we can move past barriers, we must understand each other in an effort to become closer.

The interesting thing about culture is how deep the layers go in our every day lives and how few of us are even aware when we are behaving out of our culture. We look around, assume we are the "norm," and puzzle over others and their silly ways. Or worse, judge others for their ignorant/stupid/strange (insert other adjectives here) ways. It is the judging that pulls us a part and keeps us from learning from each other's strengths. It is the judging that keeps us in a place of "us" and "them."

When Did You First Realize...?

Do you remember the first time you realized that your thoughts were not the same as everyone around you? Do you remember that first argument about something that seemed so obvious and true to you but someone else saw things completely differently? Where you frustrated? Amazed? Confused? Angry? Maybe, on some level, a little scared and taken aback?

Do you remember the first time you realized that other families didn't have the same religious beliefs or rituals as your family? Do you remember what it felt like to try and wrap your brain around the fact that your parents' beliefs were not "the gospel"? (Please excuse the pun.) What did it feel like to know that the world was filled with beliefs about God and the afterlife that were different than yours? How did you react?

Do you remember the first time you went to a friend's house or out in public and your table manners did match up with the people surrounding you? Did they look at you funny? Did they say something? Did you correct yourself automatically, because of your observations perhaps, or did you continue to do things "your way"? Were you embarrassed? Did you think you were "right" and they were "wrong"?

Almost everything we do and think in life has some footing in our culture. As children, we begin to learn that people do things differently. As adults we have the choice to honor these differences, try to change other people, or judge and shun those who think/act in a way that doesn't fit within our culture.

From the way we eat to the way we prepare food, from the way we work to the way we vacation, to the way we grieve to the way we rejoice, our culture has given us guidelines on how to engage the world. Your guidelines are not my guidelines. Before I can begin to understand your guidelines, I have to become aware of my own.

Where Did this Come From?

For the next few weeks, try this exercise on culture. Pay attention to the following "categories of life" and make notes about how you do things and when/where you remember learning this (if you can remember it at all.)

When possible, observe others who do things differently. If you can, ask them about when/where they learned to behave that way. Explore with them where they may have picked up the behaviors/attitudes/beliefs and their awareness of the cultural background. If possible, ask them the questions below and discuss your commonalities and differences.

Food:

What is your relationship with food? What does food mean to you? What kinds of food to you like? What kinds of food do you prepare? When you sit down to eat, who is with you (if anyone)? What do you like most about food? What do you like least?

Emotion:

How often do you show your true feelings? How often do you hide them? When you feel very happy, what is an appropriate way to express it? When you feel very sad or angry, what is an appropriate way to express it? Do you show your emotions differently depending on if you are in public or in a private setting? When you express your emotions, do you think about how it will impact those close to you?

Holiday Traditions:

What holiday is most meaningful to you? Why? What do you (and your family/friends) do to celebrate this holiday? In general, do you like holidays? Why or why not?

What other facets of life can you think of that are influenced by culture? Write your list and take notes!

Culture and Illness

When my grandmother was not told I had CF, I felt like my family culture was telling me that this disease was a burden too big for some to carry. When I didn't graduate from college because my genetic illness had become end-stage, it was my middle-class culture that told me I was a failure and not as worthy to speak up in certain conversations with "educated people." When I sat in the holding area before my lung transplant and felt the need to stay sunny and talk about everything other than my true fears, that was my Anglo-Saxon culture telling me to "keep my chin up." When I saw my Irish aunt screaming at the wake of her husband it was all of the cultures I had grown up in that made me so intensely uncomfortable with her way of grieving.

Illness and loss, perhaps more than any other life experience, brings out the bright lights and quiet shadows of our cultures and attitudes. Without being aware of it, we might be rubbing elbows with other cultures and people who are moving through this journey differently. At a time when our emotional skin is so sensitive, when are psyches are so vulnerable, this can cause for tension and misunderstandings.

Add to that, that we must also be functioning within a healthcare system that has its own culture and imposes a set of behavioral expectations on patients and families. Families grieving too loudly may be moved to another area. Families showing up in large groups might be asked to leave. Patients crying might be sedated. The culture of healthcare is often one that demands little outward emotionality and a submissiveness to the healthcare authorities.

As patient/family centered care begins to become a more popular ideal, this culture is truly shifting. However, it has not yet found solid footing when it comes to honoring the process and culture of a variety of individuals, families and ethnic groups. The past has caused hurt and distrust. The now is in a place of unfolding. It is a time of re-shaping our healthcare culture for a more inclusive and compassionate environment. This requires personal awareness, education and a commitment to compassion (on both sides of the healthcare curtain).

Are we ready for this? We have to be. There is no other time than today to begin working for the best healthcare experience possible.

About Writer's Block

I have been getting some emails asking me about various aspects of writing and publishing. I am not always good at answering back because i tend to have long winded answers. For example, I have had a few people ask about self-publishing vs. traditional. I have a lot to say about that. If you want to talk about it, I would request you set up a time to talk to me on the phone. Email me and we can set up a time.

Recently, someone asked what I do if I feel writers block. I have answered that one so, just in case you are interested, this was my reply:

1. pause and step back from your push to produce. find a book, a podcast or a TV show that has similar themes and allow that to feed your soul and mind. sometimes taking in other's work will inspire and stir up what will become your work.

2. pick something that is fun or interesting for you to write about. even if this doesn't mean writing "the assignment," the most important thing is to feel that flow of creativity. that flow can only begin when you feel inspired. once the creativity floods open, then you will be more likely to write on the "assigned" topic.

3. write to someone. it is easier to write to a person or group of people you know than to write in general. pick a very specific audience and tell them what you want them to know. this makes the writing about them, not you, and the words may flow easier. this may mean tweaks will be necessary later in order to fit the format, but you will be surprised at how much will be used and well written when you take the mind's focus off of yourself.

As for myself, I am excited about 2 new books I am writing. I am currently co-writing a book with Stacie Peacock about African Americans and advance care planning through Project Compassion. Second, I am taking my work to a more spiritual realm and writing a book I am currently calling "Lessons from the Edge: What Almost Dying Taught Me about Really Living."

I am excited about both! Thank you for your continued support. I wish you all inspiration and free-flowing creativity!

weep for us

In reading this article and watching the CNN footage today, I cried. What has happened to us and where are we going? What is this world we live in and when does this kind of insanity end? Where is all of this pain, rage, madness and victim-hood coming from? Is there any return or is is only to get worse from here? I am sad for the doctor. I am sad for the patient. I am sad for the man who thought this was an answer. I weep for us and wearily look to our future.

The "You Should Virus"

I have been doing some serious thinking lately! My mind is a whir with lots of things I look forward to sharing with you, my blogging buds. Two primary topics have been gallivanting through my little head these days: compassion and judgement. Two great tastes that go great together! Ok, not so much. But these are two fascinating studies in human nature, are they not?

In thinking about judgement, I will begin by confessing that I can be judgmental. I have knee-jerk reactions to things and people that I allow to go unjustified. Conversely, I can be compassionate too. Sometimes in a good way and other times to a fault. Giving all of your compassion away and leaving none for the self is a form of self neglect and (possibly) abuse. Would you agree? I am going to continue exploring this in later blogs but for now, I want to ask if anyone else out there remembers catching the "you should virus"?

I was 22 and facing end-stage lung disease. I was living in California while awaiting a double lung transplant. While I was rich in some life experiences, I was quite naive and innocent in many others. At that time in my life, I was not very judgmental of other people. This was not because I was saintly, it was because I had never really thought to be. I was too consumed with my own inadequacies to take time out of myself and judge other's life performance skills.

At this time, I began dating a man who was a little older than me (about 4 years) and had been on his own since his teen years. He owned a business and was certainly more are a part of the grown up set than I was. For this and other reasons, I idolized him and emulated him. I began dressing like him, talking like him and even thinking like him. (Sad, I know, but haven't many of us done this before we knew who we were?)

It was here I caught the "you should virus." He had frustrations at work and general frustrations with family and friends, as most of us do. His response to these frustrations often manifested as small or big rants to me. There was a formula to his rants, though. The sentences almost always started with "Well, I do this (implication here is "this" is being done well, with integrity or with great effort), and since I can do it she/he should too."

I began to learn this pattern and applied it. It felt good to say that because I was doing something well/right/difficult that this meant no one had an excuse not to live up to my standards. It achieved a nice effect of patting myself on the back and justifying my frustrations with other people. I had been infected by the You Should Virus and, little did I know, I would suffer the symptoms for the rest of my life.

As an older, more well-rounded adult, I could see the error of my ways. Intellectually it became obvious to me that people are different, with different talents and challenges, and comparing them to myself in this "If I can, then they should..." way was both pointless and silly (not to mention not-very-nice). At various times in my life I have made great effort to find medicine for the You Should Virus. Sadly, I find myself slipping back into it eventually. It seems to be in my blood.

Perhaps my approach has been wrong. Perhaps, once a person is infected with the You Should Virus, there is no cure. Perhaps this is a chronic illness that needs maintenance therapy. Currently, I am in the process of developing a therapy to help me keep this virus in check. I am excited to share this new therapy with you once I have done more research and self-experimentation.

Meanwhile, as I continue to think on these things, I wonder if I am looking for treatments to only medicate myself or if there are others infected. I would sincerely appreciate any comments on this. Am I the only one who has been infected by the You Should Virus?

Keepin' it real

Last night I had a...what was it? A hissy fit? Pity party? Break down?

The physical symptoms were not far outside normal. A bit more stomach discomfort than usual with some added shoulder pain. No biggee. No biggee surely with someone with my history. But I lost it. I gave into it. Partly because I thought the tears might provide some relief from the pain in my shoulders and the tightness in my stomach but, more so, because I was just "over it." Some of it was that tiny fear that, no matter how long I've been post transplant, still lingers and whispers "maybe this is something serious marking the beginning of the end."

My quality of life is so much better with these beautiful lungs and yet, there are other nags. Not as dramatic or easy to see as being short of breath but they are, in some ways, nearly as constant. Most of the time I eat, I feel sick. I work against fatigue all day long, like trudging through a swamp. As I get older the body creaks and whines more after what was once meaningless tasks, like carting baggage through the airport.

Most days I do what all chronically ill people can do, put on my horse blinders, ignore the pains and nagging nausea and go about business. There is the internal sensor that watches for signals that could be potentially dangerous while filtering out the usual noise of my body's normal level of discomfort.

Usually the horse blinders are so firmly fixed, I forget there are they. My struggle for energy, or even post-meal nausea, doesn't register on any important conscious level. Even if I have to lie down until the nausea passes, I certainly don't CRY about it or feel particularly sorry for myself. Usually. So what happened last night? Why the sudden dam break?

I guess sometimes the noise needs to be heard. All of that noise registers somewhere it can only be ignored for so long. Sometimes, I think I have to give myself that moment of what? Self pity? Self compassion, perhaps. Because as lucky as I am, as healthy as I appear, there is still a struggle there. As much as I breeze past this noise, my ears still hear the whining and the whirling. As much as I wish it did not exist, it does. And so, there is a real need to give in once and awhile and hold myself close, as if rocking a baby while repeating "you're ok, you're ok, let it out now."

Last night, the dam broke. Tears come to my eyes as I write this, even the next day. Holes in the structure still remain, it appears. Sometimes, it gets old and we feel tired. Some days the noise is louder than our fingers-in-the-ear trick can protect us from and our feet can not outrun it. As lucky as I am, I am keepin' it real and letting you know, sometimes it can be hard too.

Today, the dam is in repair and my soul feels refreshed for the momentary breakdown. Self-compassion. I needed that. Thank you noise, I appreciate your persistence. Thank you horse blinders, I need you too. It's all a beautiful dance. Just have to keep it real.

"Loving Daddy"

If this video doesn't work for you, try clicking inside the black box or follow this link:
"Loving Daddy" on YouTube

"Finding Your Voice" is a workshop I developed with Project Compassion. In 2010, the Train the Trainer version of this workshop was launched and 6 videos were developed to accompany new trainers in teaching their friends, neighbors and community members about patient advocacy, advance care planning and organ/eye/tissue donation. This is the one of three videos made for the donation education module. For more information, see project-compassion.org and sickgirlspeaks.com

Joy: Salt in the Wound or Hope for Tomorrow?

Before writing this, I wanted to look up the definition for the term "mindfulness." It is language I am using more often and the basis for this blog entry. However, it took me seconds (via google and wikipedia) to learn the term has many meanings and I could not find a definition for how I use it personally. Hmmm. Did I make it up and all this time I have been misusing this term?

Either way, mindfulness as I defined it somewhere, somehow, along the way is being aware of oneself (internal and external awareness) while also being aware of how one's actions, speech and thoughts might effect others. For me, this primarily means the people I care about because I feel far to overwhelmed when I consider being mindful of everyone on planet earth!

So, with this approach in mind, I find myself with a question for my blogging friends.

There are so many people in my life who are suffering. Many of them are friends I don't know IRL (in real life) but their struggles permeate my thoughts often despite the lack of physical presence. In addition, people in my RL are struggling in a variety of ways. Primarily I am referring to physical struggle, serious illness etc, but at times this can mean emotional struggling also.

More and more, I find myself feeling a compulsion to hide or downplay the sweet parts of my life. It is not that I don't have struggles, I do, but they pale in comparison to the people I know living day to day for another breath.

This compulsion comes from a place of "mindfulness" as I define it. It seems hurtful to me to sing the praises of my life when I know others are suffering so. I feel as though I should keep any of my good fortune to myself out of respect to those who are sad, scared and hurting.

I suppose I have some silly notion that when everyone is "all better" and the suffering is gone, I will again shout from the rooftops my love of this life. But, of course, the suffering will never end. One person will recover and another will suffer. This is life. One day the suffering will be mine again.

So, am I ridiculous? Can you relate? Am I on to something or out of my mind?

When you are suffering, do you like to hear of the joy in other's lives or is it like adding insult to injury?

Should I follow this instinct I have and practice my made up version of mindfulness or should I share my happiness even with those who currently suffer?

Thoughts?

we are the change presentation tutorial

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As always, thanks for all of your support!! :)

Very Superficial

The pendulum has swung and my brain has gone from "deep thoughts" that wake me up at night to pure superficial silliness. The deepest thought I have had since the book was completed is "maybe I should be a brunette." So, I think I will be a brunette and will also enjoy this break from thinking. Sometimes, it is a relief to have nothing to say.

Would you agree?

crash

I have pushed myself very hard over the past few months. I have traveled all over the place while maintaining my local speaking engagements, moving to a neighboring town, and....what was that other thing? Oh yes. I wrote a book.

It's been really stressful, in a good, carpe diem way, but stressful still. I salute this body of mine. When I push it, it goes. But it has limits and now that the book is done and my schedule feels "normal busy" again, I have crashed. I can't seem to get enough sleep and simple things make me tired. This is exactly what I would expect. Looking forward to getting some strength back, though.

I am lucky to have these legs, lungs and abilities. I am grateful.

I will be sure to let you know when the book is available. "We are the Change." Boy, I sure hope someone reads it after the effort I put into it! :)

Much love and Happy 4th! Nap time....

To the Caregivers

This morning I woke up to read about a 7 year old boy who died from CF. His mother's writings about the excruciating journey grabbed me in a place so deep within, there are no words to respond. Her rawness, her honesty, her love and her sorrow were both devastating and beautiful because it all comes from a place of pure love.

Later the same morning, I was lucky enough to be one of the speakers at a caregiving conference. I entered the room with the grieving mother on my heart but not really expecting it to connect with my day. As I listened to the first speaker talk about the role of caregivers, the level of stress they live under and the struggles they experience but rarely acknowledge, my thoughts turned inward.

My mind scanned the years past. All 36 of them (that I could remember) played themselves like a song in my head and the melody was the same in every refrain: my mother, my father, my siblings and my friends. What they have gone through. The nights of worry while wiping my brow or watching me wretch. The financial burdens, the emotional burdens, the psychological burdens and the spiritual burdens are all too heavy to be weighed.

And yet they did not stop. They did not let go. They tolerated my moods, my good and bad treatment choices, my extreme physical needs and my emotional demands. They held me even when I had lost sight that they needed holding too. They loved me even when my mind and heart were too wrapped up in my own chaos to see it and properly return their love. They gave and they gave and they gave.

And how often did I say thank you? Not, "thank you for bringing me water," but a real thank you. For all of it. For their suffering as a result of my suffering.

Rarely, if ever.

How often did I hold their hand and ask what they needed, how they could be supported?

Rarely, if ever.

How often did I reveal to them the worry I felt in my gut when I allowed myself to wonder how they would make it through these stressful, sad times?

Rarely, if ever.

How could I let them give so much and give so little in return?

Today my eyes welled with tears as I tried to think of a way to express how much the caregivers in my life mean to me. How deeply I appreciate their selflessness and compassion. How vulnerable I feel to know I was at their mercy and how humbled I am to see how well they held me together.

Mom, Dad, Lori, Jill, Jay, Steve, Paul, Liz, Watts and all of those who held my broken pieces, I did not tell you because I don't know how. I did not tell you because sometimes I was so involved in my own crisis I was unable to see beyond it. I did not tell you because what you have done for me is beyond what I can really understand. I did not tell you because what you have done for me is beyond my capacity of expression.

I have been selfish. I have been clueless. I have been lost in my own survival. But, most of all, I have been silently grateful, silently overwhelmed, and silently embarrassed. When there is so much giving that it begins to feel absurd, it feels like there is no way to match it with poetic words or meaningful actions. So, stupidly, I just didn't try.

I am sorry I have not said it enough. With all my heart, I thank you. For the care I know about and the care I didn't even see. For each individual way you have cared for me while trying to keep a balance. For the times the balance was lost and you kept caring anyway but on a tilt. You are why I am here. You are what matters. You are the people I am honored to call family. I am so lucky.

I love you. I thank you.

Support through Technology

Does it have to be IRL to be meaningful?

For some people facing illness, one of the hardest things to deal with is the sense of isolation. Even in the most loving group of family and friends, if you have never lived with illness, it may be impossible to truly relate to the experience. One powerful remedy to this sense of being alone or not feeling truly understood is connecting to others living with the same or a similar illness.

Finding direct peer support and interaction can be a challenge. Here are just a few examples of why "in-person" support may not be a reasonable option:

• Patients may be simply too sick to attend meetings or actively pursue friendships with those walking a similar path
• Some diseases are so rare there are few patients to connect with and even fewer in a specific location
• If an illness can be contagious, a peer to peer meeting is potentially dangerous
• Family members may so overwhelmed with caregiving, they do not feel comfortable leaving the home for a support group or other peer support opportunities

For these reasons and others, online healthcare communities have become the cornerstone of support for some patient and families.

For some, the level of connection and caring that can happen in the online communities is difficult to understand. Patients or family members may be misunderstood or teased for the deep bonds they can develop with people "they have never met." While this is an understandable perspective, for those facing illness and in need of peer support, these relationships become just as important as the relationships they have IRL (In Real Life).

There are certainly dangers that accompany these online friendships. Sadly, there are people on the internet who pose as patients or caregivers for a variety of reasons. These people may just be desiring attention and caring. More sinister, some may be trying to scam innocent and compassionate people out of money. While these "patients" and "caregivers" are rare, it is important to be aware of this possibility. The lengths some people will go can be quite extraordinary--computer programs to mimic hospital sounds in the background for example--so be mindful of your heart and wallet.

That said, online chat rooms, listserves and other blogging/networking sites like Caring Bridge (caringbridge.org), can be a lifeline to those living in the illness maze. In addition to emotional support and understanding, the forums can be great resources for first person accounts of certain procedures, medications and treatment options. Patient and families will undoubtedly provide a different perspective regarding a healthcare option than a healthcare professional. A peer community may also be able to provide examples of treatments being done in other centers throughout the country or the world, therefore increasing your capacity to research your options outside those presented by your local care team.

Between the emotional support and the practical information, online communities can be an invaluable resource to those navigating the illness maze.

Googling Grief

A few months ago was the one year anniversary for the death of a beloved friend. Today I was thinking of her and missing her presence. On a whim, I decided to google her name. Being that she was a smart and active woman, there were lists of articles written about her and by her. Some had pictures and some had only her words. Through the tears in my eyes I felt the closeness I had been longing only a moment before. Here she was, in front of me, speaking through words of days past. It was as though we had been able to share a cup of coffee for just a little while. Somehow, with her image and language only a key stroke away, my grief was soothed.

I have been noticing other ways in which the power of the internet is gently influencing the grieving process. I am one of the millions of facebook addicts in this country and rely on it for way too much of my own socialization. For those who don't know, Facebook is an online networking site that makes it easy to keep in touch with hundreds of people at once, and yet somehow manage to create the feeling of closeness.

In the past year, I have had several facebook friends die. Because of the rules of facebook, the only person that can close down a facebook profile is the person themselves. This means when a person dies, the facebook page will remain. What I didn't expect was how people would continue to use that facebook page.

In all of the instances I have witnessed, people continue to write on the "wall" of the deceased person's profile. Sometimes they are sharing a funny memory the two had shared that made them smile that day. Some days they will express their deepest sadness and difficulties with getting through that day without the one they love. Other times, they will simply stop by and say "hi." In all of these postings, the grieving are speaking directly to the dead, without any sense of embarrassment or awkwardness. They are not talking about their loved one, they are talking to their loved one.

It is, in a way, the cyber version of a grave stone. A central place to go where a person's energy is stored and all who knew them are welcome to visit. It is a place to cry and share. It is a place to tell the ones we love we still care and they are not forgotten. It is, in my opnion, beautiful and unique. In a culture where we have so few ways to openly process our grief, there on facebook, we are loving those who left us behind.

I don't have profound words about the social implications of this new trend. I don't know really how it fits into our cultural grieving paradigm. All I know is that today I visited my friend on the Internet and it helped me feel close to her. When I go to the facebook profiles of those I love, I somehow feel like I am walking in the footprints they left behind. This, I think, is healing.

Creating Community: The Challenge

What is a Community?

In the context of healthcare and illness, community can mean different things to different people. For the purposes of this discussion, we will describe community as one of the following:

1. A disease-specific or healthcare specialty group: Examples of these might be "the cancer community" or the "hospice community"

2. Location: This could mean a neighborhood or retirement facility, "The Shady Grove Community," or a particular health system such as "The John's Hopkins Community"

3. Organizations: This includes organizations dedicated to creating "intentional communities"for the purpose of supporting caregivers and patients who may not have a naturally occurring support network

In some cases, a community comes together to help one individual. Sometimes, one individual will blaze a trail for the benefit of an entire community. In both cases, there is often a strong personal motivation to advocate and motivate on the community level.

Before we explore the possible ways to be a community advocate, it is important to first understand the challenges that present themselves to both individuals and the community and a whole. It is by understanding these challenges that we can begin to move past them.

The Challenge for the Community:

When a family is dealing with serious illness or loss, the community feels for them. The community wants to help. Unfortunately, they don't always know how. Often people outside of the immediate situation don't feel comfortable in knowing what to say and do. They are fearful of saying something wrong and don't know what the family might need/want. It is out of this concern for putting foot in mouth or overstepping boundaries that sometimes the community takes a step back and does very little.

When communities do get involved, it is often in very traditional ways. Things like sending notes and bringing by food are extremely helpful. At the the same time, there may be more the community can do to offer support. This means getting closer to the situation and discovering the particular needs of the personalities involved.

To be as supportive to individual families, communities may need to think outside the box. First we must begin to understand each other and them we can partner with each other for the greatest level of community engagement possible.

We Are the Change

We are scared and tired

But we are not alone

We are lost and confused

But there is a map

We feel weak and sick

But there is still strength

Within each of us the power to forgive

Within each of us is the power to lead

It is time to stop expecting perfection

And embrace the humanity

It is time to take our place at the top of the hierarchy

And ask for the hands of our leaders

Look to the hearts and minds of our professionals

Invite them walk with us as we find our way through the maze

It is time for us to be strategic in our chaos

Embrace our role as teacher

It is time for us to be a partner

It is time for us to be a part of a team

Patients, families and loved ones

The time has come

Let's find our voice

And take our place

We are the change

Professional Lobbyists and Lobbying

Before I began my journey of political education, I had an image of what a professional lobbyist must look. This image likely came from various sources including media stories, Hollywood, legend and random stories I have heard in passing along the way. The characterization was not flattering and primarily consisted of men in suits with red faces doing dirty deals for questionable causes.

I have not spent much time in the political world but even a small amount of time is enough to see the corruption and disturbing practices of some individuals within the system. I am not naïve and neither is the American people; we know things in our government are not always just or pretty.

That said, I found my time with the professional lobbyists who were kind enough to let me shadow them to be both enlightening and inspiring. Dare I say I may not have had the whole picture when I had those ideas in my head? Dare I say the role lobbyists play in the ideals or the downfalls of our governmental processes are similar to the roles professionals play in medicine: there are some bad eggs but one bad apple should not spoil the bunch. Lobbyists with vision and integrity can be a vital and helpful part of the governmental machine. Likewise, lobbyists who use their talents and connections on behalf of less desirable issues, clients or agendas can be dangerous.

The role of the professional lobbyist is to be a paid intermediary. They arrange meetings on behalf of clients and speak with those in public office in an effort to move forward their client’s goals. What I did not understand before observing this world first hand was the wide variation in the type of lobbyists and how they work.

Industry Lobbyists:

Industry lobbyists are professionals who only lobby for one group and organization. These lobbyists have one perspective, one point of view, on any given issue. An example of this is Jack, the lobbyist I shadowed who worked for the National Association of Social Workers. Jack himself is a social worker and therefore, as a lobbyist, was representing his own profession. This enabled Jack to bring a level of sincerity and integrity to his work because he understood the issues facing social workers first hand. In addition, the NASW has a clear message: to support bills that enable individuals to decide what is best for themselves. This clear message enabled Jack to lobby consistently for the same rights, policies and budget decisions without ever having to have a conflicting stance.

When I observed Jack, it was clear to me why he was a successful and effective advocate for both social workers and the people they serve. Jack is large in stature and larger in personality. He is both knowledgeable and quick minded. Partly because of his training and partly because of who he is, he has a natural and sincere interest in others and this reads clearly. Jack’s work has a firm foundation in the relationships he has formed. Representatives can trust him to be honest and consistent in his concerns and arguments. His combination of being no-nonsense, humorous and consistent makes him ideal for his role as industry lobbyist.

As Jack and I walked around the grounds of the various Legislature Buildings, he explained to me that the work he does happens in more places than the various meeting rooms. In fact, more often than not, by the time a bill gets to Committee, he knows what the vote will be because all of the real work takes place before the actual meeting. If Jack knows that his bill is going to be voted in the favor of his organization, he may not attend that committee meeting and, instead, track down more pressing business. It should also be noted that Jack had an unusual level of energy, as do many people in this line of work. At any given time, Jack might be watching and weighing in on as many as 30 bills.

Jack’s lobbying efforts happen whenever the opportunity presents itself. This means elevators, hallways, stairwells, and yes, even bathrooms. Whenever Jack can get a moment to talk to a resistant representative or a senate ally that needs to be informed of some problems on the horizon, he will take it. Life is that hectic in the political worlds, people are that busy, and the issues are that important.

So what kinds of things might you hear Jack saying in an elevator? He says one of his favorite opening lines is “OK, Representative, it’s time for you to get mad about this.”

Bottom line: It’s all about the relationships and seizing the opportunity

How do we build those relationships, you ask?

Legislative Liaisons: state employees who track bills similar to lobbyists but don’t have as much power as professional lobbyists

Contract Lobbyists:

When people think of lobbyists, they are often envisioning contract lobbyists. These are the people and the firms that carry a load of clients with varying issues and perspectives. Often contract lobbyists are lawyers, but this is not always the case. I had the opportunity to sit down with the vice president of one of the biggest and most successful lobbying firms in Washington DC.

Side note: How did I get this chance, you ask? I’m glad you asked. This is an example of the power of “what’s the worst that can happen, they say no?” In my research, I found and joined a website called lobbyist.info. I took a stab in the dark and wrote to this faceless website, told them my project, and asked if they had any suggestions for a lobbyist I could shadow during an upcoming trip to DC. Would you believe they wrote back in less than 24 hours to say one of their board members had volunteered to meet with me, his name was Mike, and he would be contacting me. Who knew? Just goes to show, they can say no but they may say yes. Might as well ask, right?

Before I took my trip to DC, Mike and I had exchanged several emails and he seemed very casual and down-to-earth. Imagine my surprise when I arrived at his office and realized I had just walked into a real-life Hollywood set. The sleek office took up half of the eleventh floor with views overlooking Capitol Hill and the National Monument. When I told the receptionist who I was there to see she kindly motioned behind me and said “Are you Tiffany Christensen?” On a flat screen television behind me read “We welcome Tiffany Christensen.” This was the big leagues and I was wearing flip flops. Miscalculation of wardrobe, for sure!

When Mike came to greet me he was kind and, even in a full suit and tie, approachable. He began to show me around his office that had few corners and mostly curved walls leading us to various destinations. It would have taken me all day to find my way back to the receptionist. Immediately, Mike began to point to impressive and recognizable campaign displays hanging up. I don’t mean campaigns for candidates; I mean the campaigns you see in magazines and television advocating certain causes like preventing teens from becoming smokers and raising awareness about hepatitis C. These were not obscure. I recognized almost all of the campaigns.

I was confused. I thought I was visiting a lobbying firm but this sure looked like a marketing firm. Had I contacted the wrong people? Mike continued to explain the campaigns on the wall and the clients they designed them for. The Post Office, The Ronald McDonald House, and the YMCA were just a few. These were big clients with big agendas. This was a big firm with big ideas. I was looking at lobbying on a whole other level.

After a tour of the office, Mike and I sat down to look at a pile of client studies he had pulled for me. He went through each example and explained the client, the intention and the resulting action. The kind of representation his company provided varied.

Fill in examples here

There were consistencies between the techniques of Jack and Mike. They shared some of the same frustrations and some of the same love for the role they got to play within our political system. They both said the same thing to me several times:

“You, the constituent, have more power than I do.”

Whether you are working in a smaller setting, a large corporate setting, or somewhere in between, first person narrative still trumps all. Mike sites the main barrier to having that narrative heard is the fact that there are so many voices, it can be hard to break through the masses. This is part of what Mike’s firm specializes in. To remedy this, they have created a training center for people to come and learn how to present themselves at press conferences, on CNN, and any other large scale forum. They train everyone from CEO’s of major corporations to patients like me.

At some point during my talk with Mike, I began to feel both excitement for the impressive work that I was seeing in front of me and discouraged that this kind of lobbying skill was reserved for larger fish. Mike addressed this by encouraging me to approach firms like his. He repeatedly asked me to “not write it off” but instead ask for help. If there was a compelling story, a policy that needed addressed, or some other valuable message from a small organization or individual, Mike believes firms like his might be able to help. One way they could do this is by doing the work pro-bono and another way is to scale back the effort where it may not be a full out marketing campaign but the connections could be used to distribute important information, press releases etc.

I like Mike’s suggestion and I have another of my own. If I were to take away the glossiness of the campaigns I saw at Mike’s office, there would still be an essential, effective core. These campaigns were not just veneer, they were smart, concise, and clear. They took time and preparation. Whether they were letters, press releases, or large television campaigns, they were not off the cuff. They took in to consideration their audience, the political climate of that moment, and the emotional hook. When I walked away from the campaigns, there was never any question about what “the ask” was, either to the general population or to a particular political figure.

Bottom Line: We may not all be able to hire big firms like Mike’s. That doesn’t mean we can’t think like them. Make relationships the foundation of your advocacy efforts and then design a clear, memorable, and well-thought out campaign. We may not have access to industrial printers but we can all be prepared and clever in our presentation.

The Dark Side of Professional Lobbying:

If you ask a lobbyist why the profession has such a bad reputation, they will likely tell you that they are misunderstood. For those that have integrity and a true respect for the process, this is true. However, lobbyists did not get a bad reputation for no reason. There are some questionable lobbying practices and some that are simply corrupt.

Perhaps one of the more commonly known, and widely disapproved of, lobbying practices is called “the junket” which is an excursion for the purpose of pleasure at public expense. Junkets might include all-expenses-paid conferences in luxurious locations, or expensive meals and wine. An example of this kind of extravagance is Mr. Tom Delay’s many trips paid for by various organizations. These include: 10 days in Kona, Hawaii in 2002, in which the American Association of Airport Executives reimbursed him for $5,967.28, a trip to Singapore in 2001 in which The Heritage Foundation reimbursed Mr. and Mrs. Delay’s for $8,428, and the same year the National Center for Public Policy Research paid for his and his wife’s visit to Scotland that same year with a reimbursement of $28,106.

Large organizations set aside great sums of money to fund lobbying efforts. As an example, The Pharmaceutical Research and Manufacturers of America had $150 million budgeted for 2004. It is easy to see with these examples why the public looks down on the lobbying profession. While the practices may be tolerated, they clearly carry with them an air of bribery. With such lavish gifts, it is only logical to conclude that government officials would be unable to make objective decisions in the face of such gifts.

In 2007, the Honest Leadership and Open Government Act was passed to try an address some of the corruption, like the examples above. Here are a few key points of the law as found on commoncause.org:

Prohibiting Gifts by Lobbyists

• Prohibits lobbyists from providing gifts or travel to Members of Congress with knowledge that the gift or travel is in violation of House or Senate Rules.

Full Public Disclosure of Lobbying Activity

• Requires lobbyist disclosure filings to be filed twice as often, by decreasing the time between filing from semi-annual to quarterly.
• Requires lobbyist disclosures in both the Senate and House to be filed electronically and requires creation of a public searchable Internet database of such information.
• Increases civil penalty for knowing and willful violations of the Lobby Disclosure Act from $50,000 to $200,000 and imposes a criminal penalty of up to five years for knowing and corrupt failure to comply with the Act.
• Requires the Government Accountability Office to audit annually lobbyist compliance with disclosure rules.
• Requires lobbyists to certify they have not given gifts or travel that would violate Senate or House rules.
• Requires the disclosure of businesses or organizations that contribute more than $5,000 and actively participate in lobbying activities by certain coalitions and associations.

New Transparency for Lobbyist Political Donations, Bundling and other Financial Contributions

• Requires disclosure to the Federal Election Commission when lobbyists bundle over $15,000 semiannually in campaign contributions for any federal elected official, candidate (including Senate, House and Presidential), or leadership PAC.
• Requires lobbyists to disclose to the Secretary of the Senate and the House Clerk their campaign contributions and payments to Presidential libraries, Inaugural Committees or entities controlled by, named for or honoring Members of Congress.

Prohibited Use of Private Aircraft

• Requires that candidates, other than those running for a seat in the House, pay the fair market value of airfare (charter rates) when using non-commercial jets to travel. (This affects senate, presidential and vice-presidential candidates)
• Requires candidates for the House to comply with rule XXIII (15), which prohibits use of non-commercial aircraft.

Toughening Penalties for Falsifying Financial Disclosure Forms

• Increases the penalty for Members of Congress, Senior Staff and Senior Executive officials for falsifying or failing to report financial disclosure forms from $10,000 to $50,000 and establishes criminal penalties of up to one year of imprisonment.

For those of us who do not seek a profession in politics, it is likely that these types of activities will remain obstructed from our view. However, it is important to be aware such practices exist and to understand the power of big companies and lobbyists with questionable practices.

As my lobbyist guide, Jack, told me “You win some and you lose a lot.” This is not a perfect system, far from it, but that does not mean it is not worth your time and effort. Even against big companies or fancy corporate lobbyists, the patient voice can still prevail.

The Patient Experience, Front and Center, Inspires Change

In the 1960’s and early 1970’s patients with kidney disease requiring dialysis were struggling. This expensive treatment was not covered by Medicare and had to be paid for by private insurance or out of pocket. In 1971, serious policy debates focusing on national health insurance were underway in both Congress and the

White House. During a Congressional Committee Meeting, The National Association of Patients on Hemodialysis (NAPH) was allowed to speak about the importance of insuring people receiving dialysis.

Despite urges not to by several kidney organizations, the vice-president of NAPH chose to take his dialysis treatment in full view of the committee before the meeting officially began. He was accompanied by a reluctant physician there to safe-guard the treatment and the patient. The press discovered this story and made the dramatic event known to the general public.

Some believe this brave display influenced the decision to create the Medicare ESRD (End Stage Renal Disease) Program; giving dialysis patients meeting Medicare criteria the coverage they need for treatment. Others believe the testimony of a parent of a hemophiliac child made a greater impression on congress. Either way, the fact remains: the patient and family voice was a catalyst for change on the national level

Everyone Matters in Healthcare

Not "Just" a Receptionist

A friend of mine with lung disease had gotten sick enough to be evaluated for a lung transplant. When she called one of the best centers in the country, the receptionist was horribly rude to her. She was given "the run around" and became very discouraged without ever getting an appointment to see the transplant team. Over the next few days, after several unsuccessful and impolite phone calls with various receptionists, my friend was never able to get the appointment she needed or the respect she deserved. It had been such a bad experience she gave up and went to another transplant center in a neighboring town.

The center in the neighboring town did not have the same level of expertise but the receptionists were very nice. My friend was willing to work with a less skilled team in exchange for not having to deal with disrespectful receptionists.

Logical or not, this proves a major point: everyone matters in healthcare. As a receptionist, it may not feel like you have the same power as the transplant surgeon but, in some ways, you do. As the front line, the face of the institution, you have the power to make or break the initial patient experience. You are very important. You can make a patient feel safe and cared for. You can make a patient feel alienated and like a burden. You can influence our decisions just by the tone in your voice. Never underestimate the power of a kind word.

House Keeping!

Every morning in the hospital I awoke to those words: "House Keeping!" In would come a member of the hospital's house cleaning staff and make lots of noises emptying trash cans and mopping the floors. As a sick person who craved peace and quiet, it drove me nuts. I needed that to be re-framed for me.

Recently, I heard Dr. Victor Dzau of Duke Hospital tell a story about the importance of the house keeping staff. He said when he asks his hospital cleaning staff "What are you doing?" the answer he hopes for is not "Cleaning this room" but instead "Saving lives." In an environment with so many infection risks including MRSA and Staph, just to name a few, the role of the house keeper becomes crucial. They stand between the patient and a potentially deadly infection.

We all need to be recognized for our value and this includes the house cleaning staff. What do you think they level of difference might be in a person's dedication and performance if they are, A. cleaning a room or B. saving lives. I know which job description would make me feel like an important part of the care team and motivate me to work harder!

It is important to find ways to honor everyone in the system because, in unique ways, everyone really does matter. The next time you hear the words "House Keeping!" try to thank them for the important role they play in patient safety.

As Kevin Sowers, President of Duke Hospital states, "Having patients and families tell the staff what we mean to them changes the culture of healthcare."

Being an advocate doesn't only mean speaking up about what has gone wrong, it also means enforcing good practice by speaking up and telling those caring for you that they have made your life better. Everyone matter, don't forget to tell them that!

The Difference Language Can Make

DNR vs. AND

A DNR (Do Not Resuscitate) form is a common component of the advanced care planning documentation. This legal, binding document states that a person does not wish to be resuscitated in the case of cardiac or respiratory arrest.

There is a movement in the hospice world to change the DNR document to an AND form. AND stands for Allow Natural Death.

The AND form serves the exact same purpose as the DNR form, so why bother with this name change?

Think about the difference in the language here.

Do Not Resuscitate. Does that leave you with a feeling that there is something that you could do, you have just chosen not to? Does it feel like you could have done more but, instead, you gave up? This language gives patients and families a mixed message.

Allow Natural Death. This reminds us that death is natural; something that is easy to forget in the emotional frenzy of modern medicine. This language gives us permission to not pursue resuscitation, a medical intervention that can sometimes lead to more complications and pain.

It is not surprising that this motivation to change the DNR terminology came from pediatric hospice professionals. It is difficult for a parent to "not do everything" and the DNR language comes with that implication. The hope is that the AND language will feel less like a judgement and give families more room to contemplate the best course of action for the one they love.

Different but Synonymous:

A similar example of how language may frame a situation can be found in actual professional titles. In recent years, hospice organizations began to distinguish comfort care from end of life care by creating a separate team of professionals called palliative care. This new language was developed as a way to comfort those who were not ready for the end of life journey--and therefore not ready/eligible for hospice--but were very ill and would benefit from a team specializing in pain management and other serious complications.

Unfortunately, over time the terms hospice and palliative care have become synonymous. When lay people are told they are being referred for a palliative care consult they usually associate that with end of life. The idea to change the language so as to create a distinction between comfort and end of life care has been unsuccessful. Patients and families tend to respond the same way to both.

So what is the solution? Some might suggest a continued effort to educate the public on the difference between palliative care and hospice. Others are advocating for a new name altogether. One possible name I have heard, "The Family Care Team," is far less technical and may be more appealing to patients and families not yet ready for hospice. No matter what, it is easy to see from these two examples that language can sometimes have a major influence on how patients and families feel about a particular option. It can even determine the success or failure of a service.

How Do You Ask Me How I'm Doing?

The way we use language can change the patient experience. In one institution, professionals have been trained to no longer initiate communication with patients in the traditional way of saying "How are you today?" In our culture, that is a rhetorical question and is usually met with the knee jerk response "I'm fine. How are you?"

In a healthcare setting, this opening interaction between patient and professional has the potential to be an important interaction for gathering data. If the primary question remains "how are you?" the patient will likely not respond with useful information. Just by training professionals to ask "How has your experience been so far?" to those patients in the hospital, the language has already greatly reshaped the value of the conversation. This is a very different question, is not rhetorical, and holds the space open for honest and important communication.

It's so simple, right? But it's so complicated. Healthcare leaders, professionals, patients, and families have to look at what has become routine language and ask themselves how a slight change in vocabulary might create a higher level of communication and sharing of pertinent information. Language impacts the way we frame things in our mind, even when we are not aware of it.

Take some time and think about other examples you have of medical terminology that hold the potential to box you in to an impression, a belief, or an expected course of action? What other language can you use to open the lines of communication and have a shred mental model with those around you?

The Professional Chain of Command: An Unofficial Chart

The Chain of Command in hospital and clinical settings can be very confusing. Traditionally, the official descriptions of healthcare hierarchy is separate for nurses, physicians and other professionals. However, it benefits the patients to understand where these professions might fall together. This graphic is not based on scientific data but rather observations and opinions of professionals working in healthcare and from those receiving care. This chart is primarily modeled for teaching institutions.

Do you know the roles of all of the people (and others) included in this chart? If not, here are some definitions that may be some help.

Healthcare Administration: leaders who oversee the administration of hospitals, hospital networks, and health care systems.

Some of the titles you may recognize for the administration include: Chancellor, Vice Chancellor, President, Senior Vice President, Chief Executive Officer, Dean, Executive Director, Chair

Attending: an authorized practitioner of medicine, as one graduated from a college of medicine or osteopathy and licensed by the appropriate board. This includes:

Surgeons: a physician who specializes in surgery

Hospitalists: A physician, usually an internist, who specializes in the care of hospitalized patients.

Sub-Specialists: a physician whose practice is limited to a particular branch of medicine or surgery, especially one who, by virtue of advanced training, is certified by a specialty board as being qualified to so limit it

General Practitioner: a physician whose practice consists of providing ongoing care covering a variety of medical problems in patients of all ages, often including referral to appropriate specialists

Fellow: General Surgeons & Internal Medicine physicians training for subspecialties

Chief Resident for Surgery or Medicine: a senior resident physician who acts temporarily as the clinical and administrative director of the house staff in a department of the hospital.

Resident: a graduate and licensed physician receiving training in a specialty with 3-4 years experience, depending on area of study

Physician Assistant: certified by an appropriate board to perform certain of a physician's duties, including history taking, physical examination, diagnostic tests, treatment, and certain minor surgical procedures, all under the responsible supervision of a licensed physician

Nurse Practioner: authorized to practice across the US and have prescriptive privileges in 49 states. NPs also take health histories and provide complete physical examinations; diagnose and treat many common acute and chronic problems; interpret laboratory results and X-rays; and provide health teaching

Intern: An advanced student or recent graduate who assists in the medical or surgical care of hospital patients and who resides within that institution in the first year of residency

Charge Nurse: the nurse assigned to manage the operations of the patient care area for the shift. Responsibilities may include staffing, admissions and discharge, and coordination of patient care.

Nurses (RN): a graduate nurse who has been legally authorized (registered) to practice after examination by a state board of nurse examiners and who is legally entitled to use the designation RN.

Nurses (LPN): graduate of a school of practical nursing who has been legally authorized to practice as a licensed practical or vocational nurse (L.P.N. or L.V.N.), under supervision of a physician or registered nurse

Most of the above definitions were provided by:

medical-dictionary.thefreedictionary.com

For these and more clarification about professional titles visit this website