Sunday, May 30, 2010

What is Wrong with this Picture?

I was excited to sit in on my first real healthcare reform committee meeting. North Carolina Senators were discussing some State initiatives for the healthcare budget, project funding, and policy issues around mental health and other health issues. I was interested to see the process, hear the discussions and be a part of the "audience."

My lobbyist tour guide, Jack, and I arrived early and took some of the first seats, ideal for a great view of the whole room. We watched people filter in and most had several people to greet. Serious conversations about bills that needed attention mingled with light-hearted conversations about children, vacation, and "finding a new career." Few people in the room were average citizens, like me. Primarily the room filled with professional lobbyists, the representatives, and their sponsored pages.

With no mental effort, Jack pointed out to me the major players in the room. He provided the organization(s) they lobbied for, their common position on their particular healthcare issue, and several key personality traits. It was fascinating but something in the back of my brain was itching. I continued to scan the room for a familiar face. After all, this was a discussion on healthcare and I had been around the block long enough to know a good amount of the "big wigs" in local healthcare.

None of the big wigs I knew were there. How could we be discussing these things without those in the field, those living these issues, weighing in? Where were the practicing professionals? Where were the head of the coalitions? Where were the advocates who watch over the benefit of their clients? They were not there, they were working.

It struck me in that moment what an insulated world this place of government truly is. The professionals pushing the agendas are not the same professionals living the experience of healthcare; from a professional or patient point of view. These conversations were lacking. They needed the input of these leaders. Something was wrong with this picture. There is a big, important disconnect between those making the policies and those living within them.

Political Advocacy for Beginners: Helpful Definitions

Coalition: Alliance of groups united for a cause. Some coalitions are independent; others who lobby Congress are affiliated with lobbying firms. (Examples: Coalition for Affordable and Reliable Health Care, End of Life Coalition, Pediatric Healthcare Coalition). Coalitions are required to disclose their members in their Lobbying Disclosure Act filings, per provisions in the Honest Leadership and Open Government Act.

Constituent: A resident of a district or member of a group represented by an elected official, One that authorizes another to act as a representative; a client.

Grassroots: Term used to describe action with a wide level of citizen engagement. Examples of grassroots advocacy include a union or association encouraging its members to contact a Member of Congress on a particular issue, typically with a particular policy objective in mind. Examples of other popular grassroots actions include letters to the editor, attendance at rallies, or signing petitions.

“Grassroots lobbyist”: This person is a “citizen lobbyist.” (See definition for “Grassroots,” above). Organizations such as the Sierra Club or the Heritage Foundation encourage their members to contact their Congressman on an issue, write letters to the editor, sign petitions, or attend rallies. These citizen lobbyists do not need to register under the federal Lobbying Disclosure Act if they only engage in grassroots activities. However, some states do require the disclosure of grassroots lobbying.

Lobbyist: Person who advocates on behalf of himself or a client to pass a law or to make changes to a bill being considered in a federal or state legislative body, or to help shape policy in the executive branch and its regulatory departments. Lobbyists can come from either the private sector or from a legislative affairs department in a federal agency. There are two types of lobbyists: grassroots and professional. The House and Senate includes in its "Guide to the Lobbying Disclosure Act" a definition of a lobbyist as: “any individual (1) who is either employed or retained by a client for financial or other compensation; (2) whose services include more than one lobbying contact; and (3) whose 'lobbying activities' constitute 20 percent or more of his or her services during a three-month period.” If this is the case, then this person must register as a lobbyist under the Lobbying Disclosure Act.

“Professional lobbyist”: According to the Lobbying Disclosure Act (LDA), this refers to a person who is compensated by an outside client or by his employer to lobby the government. This person typically engages in direct contact with elected officials.

Within this category there are two different types of lobbyists:
In-House lobbyist: This person is employed by an organization to lobby on behalf of its own interests. Examples of organizations that would employ in-house lobbyists: AARP, National Rifle Association, U.S. Telecom Association.
Outside (or contract) lobbyist: This person is employed by a lobbying or consulting firm and is retained by an outside organization to lobby on its behalf.

Branches of Government:

The Legislative Branch makes laws for State Government. It is made up of the Senate and the House of Representatives, which together are known as the General Assembly. The Legislature meets biennially and all members are elected for two-year terms.

The
Executive Branch of government enforces laws made by the legislature. The head of this branch is the Governor, who is elected every four years. Along with the Governor, the Executive Branch also includes the Lieutenant Governor, the Council of State, and many State agencies.

The
Judicial Branch interprets what our laws mean and makes decisions about the laws and those who break them. The Courts of the Judicial Branch are split into three divisions, the Appellate Division, the Superior Court Division, and the District Court Division

The role of the United States Congress is explicitly defined and limited in the United States Constitution. The 10th ammendment states, "The powers not delegated to the United States by the Constitution, nor prohibited by it to the States, are reserved for the States respectively, or to the people." The Congress is comprised of two chambers:

Political Advocacy for Beginners: Lumping

In order to represent we the people, the people have to be put into boxes. As lobbyists and politicians hammer out issues and how to turn them into policies, generalities must be made. People are put in to categories and decisions are made based on what seems best for that particular "demographic." This poses many challenges for those making the laws, not least of which is how to break down the demographics into a manageable number of boxes. With such a large number of people being represented, there are many,many boxes. This, however, does not change the fact that these boxes may be too large.

In the time I was observing the senate, I witnessed several glaring cases of what I have labeled as "lumping." One discussion involved the rights of pharmacists to dispense, or not dispense, needles. The argument was being debated about "needle users," referring to both illegal drug users and diabetics. We had been lumped by our need and our activity with no consideration as to the purpose of the needle use.

It is important for healthcare advocates to understand lumping. While it is understandable that there can not be boxes for every person and every circumstance, this method should be monitored and noted. While some of the issues facing those with mental illness and drug addition may have some overlap, do they have enough overlap to lump them together? From an experiential perspective, the answer is "no" but they are often seen as the same for the purpose of policy-making. Similarly, those with chronic illness are lumped together with geriatric individuals and those who are blind and deaf are lumped in with the chronically ill.

Looking at these demographics from a purely procedural perspective, these lumpings might make sense. Looking at the actual experience, however, there are some significant differences. These differences make this demographic lumping cause for concern. While, as a chronically ill person, I may have some of the same long-term needs as someone with advanced age, I also have a higher investment in recovery and being active. If policies are developed with geriatric people in mind, how much focus is going to be put into integrating into the work force and other avenues for productivity? We face different issues, have different goals, and need different kinds of care. Lumping can be dangerous for those with chronic illness living by the rules set for those with advanced age.

Lumping is an inevitable part of the political process. Lines have to be drawn somewhere to represent large groups of people. If those groups are not paying attention, this inevitability can negatively impact lives. It is essential that political activists keep an eye out for how the boxes are being organized. If you are about to be negatively impacted by lumping, that is the time to use your voice and help the policy-makers see why the categorization is inaccurate and detrimental to a whole group of individuals. While it may seem obvious to you, this distinction may not be obvious to them. Remember, they are seeing this from a policy perspective. It is your job to help them see it from the real-life perspective.

Tuesday, May 25, 2010

Time Out for Cuteness

The canine love of my life, Jenny, enjoys a day at Doggie Day Care. All together now: "Awwwww!"


"Battle Metaphor" repost with new ending

After the unexpected death of a friend of mine, my sister made the comment that I have known more people who have died than anyone, especially young people. That's an unfortunate side-effect of becoming a part of "the community." When you have the privilege of meeting so many amazing people living with chronic and serious illness, either online or in real life, you may have to find ways to say goodbye to them. Or, one day, they will say goodbye to you. It hurts and sometimes it feels like there is too much loss to bear. Even so, I wouldn't consider taking a step back from "my people" because these friendships are valuable, not to be outshone by the difficulty of death.

This morning I was reflecting on the language we use when talking to someone with illness or talking about them after they have died. One primary metaphor permeates: The Battle Metaphor. We provide encouragement to those we love with phrases like "You're strong, I know you can beat this" and "Keep on fighting, you have come too far to let (insert medical complication here) take you." Likewise, we use similar terminology after death by saying things like, "She lost her battle with..." or "she fought a good fight."

When I think back on my days on the ventilator or my days living with end stage chronic rejection, I try to imagine how I might "fight" in those circumstances. Nothing comes to mind. It is a one foot in front of the other place to be. The "fight" is literally in "being." There is no effort beyond that. I don't know how I could have changed what I was doing to honor a wish to fight. Nor do I think, had I found myself in a place where I was too tired/sick to continue, there would be anything wrong in "surrender," yet another battle metaphor and one that implies defeat.


A few days ago, I was talking to my chiropractor who I have known since before my first transplant (10 years ago). He was marveling at how long it had been since my second (6 years) and asking me if I attributed the better outcome of the second set to anything in particular. My answer was medical in nature: "I don't know but I would guess it has something to do with a better chromosomal match and perhaps the fact that I had a Nissen to prevent reflux. They have linked reflux and chronic rejection now." He looked a little disappointed. "But do you think it has anything to do with your attitude?" he said, "It could be your positive attitude."

I struggled to not sound upset. "I have known too many people who had better attitudes than me, worked harder than me, and wanted to live as much as me, and they are gone. I can't take any of the credit." He was quiet and my mind kept turning. "But," I realized, "While I don't think a positive attitude can reverse an inevitable, physical decline, I do think a negative attitude can accelerate, possibly even begin, a physical decline." Is that possible? Can the results of a person's attitude go one way and not the other?

The battle metaphor bothers me. It always has. It suggests a level of control over my physical body that I simply don't have. It suggests a failure on my part when I am not able to "fight hard enough" to reverse a disease, a complication, my own death. It suggests triumph for "survivors," people who have won the battle. I don't want to be called a survivor because that, in context, makes my some of my friends losers. When I imagine someone telling my mother I lost my battle with (insert my cause of death here) I shudder. Does that not suggest I could have done something more to win? Perhaps she could have done something more to inspire me? Perhaps my doctors could have worked harder to find ways to keep fighting? Unintentionally, the metaphor places blame on those who do not recover the way loved ones would hope and gives too much credit to those who are able to recover.

So what language could we use to replace this metaphor? First, we must begin by exploring the intention behind these words. When someone says to a patient "Don't give up!" what are they saying? Are they intending to say that if this person dies they will forever consider them a quitter? No, of course not. So what does someone mean when they say "Don't give up!"

I believe the deeper translation to this phrase is something along the lines of "please don't go!" or "I don't know what I would do without you!" They are imploring the patient to "fight" so that they do not have to suffer the loss. Other possible translations to similar battle metaphors might be:

"I'm scared!"
"I don't know how to handle this!"
"I don't know what to say!"
"I can't believe that you are so sick! I can't even believe this is happening!"
"I want you with me as long as possible!"

In addition, our culture caries many unspoken myths about the power of "letting go." If someone were to drop the battle metaphor and say something more authentic like "I want you here with me desperately because I love you so much but I know that may not be under your control. I will understand if the time comes for you to let go," our culture would likely judge and reject this sentiment. (That is, unless it is in the case of a person in hospice care and is surely days or hours from death. It is only at this time that we feel comfortable telling those we love that "it's ok to let go.") Just as we believe the power of positive thinking can alter a physical state, we fear that offering surrender will encourage and speed up a person's death. For this reason, we are trained to keep such "negative" thoughts to ourselves.

Crazy things do happen. People recover from things, sometimes to the great astonishment of their healthcare professionals and loved ones. At the same time, this can not be, and is not, the case for everyone. Can we find language that does not carry with it so much unintentional blame/praise? Is it realistic to think people might be interested in learning more helpful ways to offer support? Is it justified that patients may wish for a different kind of encouragement or should we just be happy someone showed up at all?

Let me be clear: I am not trying to be critical of people who use The Battle Metaphor. In this culture, to have someone willing to offer support in any way, shape, or form is a huge gift. I have not written this to accuse anyone of doing something "wrong." I have written this in an effort to look at our common language under a microscope and ask if we have a better alternative. I would rather you use The Battle Metaphor than say nothing at all.

That said, it is my opinion that a more effective alternative to The Battle Metaphor is to use "I" statements instead of "You" statements. So, as an example, instead of saying "You can't let this illness beat you" you could say "I want you to recover from this illness so badly!" This is likely a more authentic approach and does not "ask" the patient to "do" anything. Some other examples of replacement I statements might be:

"I am here for you."
"I am thinking of you constantly."
"I miss you."
"I am so sad that you are sick. I wish I could fix it."
"I want the best for you."

This is a touchy subject. Some people don't want to be "censored" or made to feel like they can say something wrong. I don't blame them and this is not my intent. During times of illness, people can feel lost and confused about how to react, what to say, and how to offer support. It's my belief that this does not have to be a mystery. There are generalities that can be made when communicating about illness and grief. Just as those in the grief world advise people to avoid phrases like "He's in a better place now" or "It's for the best," patients can offer their perspective on the most helpful ways to be supportive in times of sickness and end of life.

Let's not question the intentions. Let's assume love is the motivation behind any of these interactions, Battle Metaphor or otherwise. We need not question the heart of the person speaking but we can seek to understand each other more. As we pull back the curtain, we can learn from each other and make our communications even more meaningful.

Monday, May 24, 2010

Yes, Your Voice Matters

Getting Going:

The first challenge to "getting going" as a political advocate is simple to identify. Even in thinking about political advocacy, the question "Where do I start?" can be enough to discourage a person from going any further. The good news is there is an easy answer to that big question.

Start anywhere.

First, get clear about what general or specific areas you are most interested in. For the purposes of this blog, we will assume health advocacy is at the top of the list. From there, your interests may become more specific and include topics like Medicare reform, Organ Donation policy, or research dollars for a specific illness. Whatever your area of concern, don't worry if you have no idea who to talk to about it. Just start anywhere.

1. If you don't already know, learn who represents you. Each state has their own website listing members of the general assembly and what areas of the state they represent. In the internet age, we have a great advantage to "starting anywhere." To find your state's website you can google "(Your) State Legislative Website Directory" or "(Your) State General Assembly)."

You can also start by visiting www.ncsl.org (National Conference of State Legislatures). There you will follow the "Resources and Directories" menu, follow the link to "State Legislative Websites" and click the page's link to this directory.

Once you find your way to your state's general assembly website, the formats may vary slightly state to state. Look for menus related to "Representation" and follow them to specific fields asking for your district, zip code or county. The websites will provide you with the names and contact information for House and Senate members meeting your criteria.

2. Contact your representative by dropping by, making an appointment for a face-to-face, calling or emailing. Speak to them or to their assistant. *Rest assured, Legislative Assistants are the gatekeepers to people and information. They can help you!*

3. Don't worry if the first person you contact is not interested in or involved in your particular area of concern. Remember the rule is Start Anywhere. When you reach the representative or, more likely, their assistant, tell them briefly about what areas of politics you hope/plan to become involved in or learn more about. Follow this short introduction with the question "Can you direct me to someone who is currently working on the issues I care about?" If they don't know, they will likely know someone who knows. It may be a phone tree, but you will get to the right person eventually.

Does My Visit/Call/Email Really Matter?

The short answer is : Yes! by law all visits, calls, and emails must be logged. Your input is counted.

The longer answer is : It Depends!

There are ways to more or less effective when reaching out to representatives. It is said:

1 face-to-face is worth 10 phone calls
1 phone call is worth 100 emails
It takes 7 contacts by a constituent before they become recognizable

The more personal you can make it, the more effective your advocacy will be. Get to know your representatives and let them get to know you. For maximum effectiveness, they need to know you by name.

The average state representative is considered to be part-time and makes very little income. At fist glance this may seem noble but, in practice, it dramatically narrows the demographic of individuals capable of taking on such a position. For most people working for under $15,000 a year (the salary quoted in May of 2010) with a wildly unpredictable schedule is simply not an option. This unusual circumstance primarily leaves room for individuals who are retired or independently wealthy to take on the role of house or senate representative.

These individuals often come from a background of privilege and many have lived within the world of politics since birth. While this demographic certainly warrants respect, it also warrants caution. For a person of color or a person living with chronic illness, it is fair to wonder if this demographic is equipped to speak on behalf of a world they likely do not know intimately. When you ask "Who represents me?" the answer is: You and people who have walked a similar road. We can not depend on those in office to comprehend the nuances of our experience. Our stories must be told. Our stories can influence political views. Our stories matter.

The bottom line, my friends, is we have a voice in the political arena. Once we are armed with all of the information we need and prepare ourselves to be effective in the political arenas, there is no reason why we can't be a part of the change! Political advocacy is waiting for you, if you so choose. We need your voice.

Saturday, May 22, 2010

Calling All Healthcare Professional Bloggers!

I am writing a new book and am looking for stories told from all perspectives of the healthcare system.

I am looking for stories from healthcare professionals about a time when the healthcare system protocols provided a barrier for you to perform the best patient care. I want to know how it made you feel as a professional.

More generally, I am looking for any professional's account of the emotional experience of caring for sick and dying. As examples, I want to learn more about how you cope, what ticks you off and how you grieve.

I'm not looking for new pieces necessarily, I am hoping you will let me publish something from your blog alongside your blog address.

Please spread the word to the healthcare professional bloggers you know. Thanks!!

Pulling Back the Ropes: Humanizing Government

The first day I shadowed Jack, a North Carolina lobbyist, the itemized budget for the next year had just been released that very morning. This would inform the rest of our day.

Jack handed a copy to myself and my sidekick, an intern in his association. It was long, heavy, and looked like Greek to me. This wasn't surprising, however. I knew nothing about this governmental system of ours. I never paid attention in elementary school when we learned about "how a bill becomes a law" and, as an adult, it appeared far too complicated and corrupt for me to care. It seemed to me that my voice could never be heard over the loud chaos of our governmental machine.

This day, with Jack and his intern, I was in the belly of the beast. It was a crash course in how similar politics are to high school and how effective one citizen could actually be. As we crossed the grounds of the State Legislative Building and the nearby legislative office building for the first time that day, my eyes were confused.

There was what I expected; many older, Caucasian men in suits who looked important or, at least, like they had important places to go. I recognized one president of a major hospital and was told he was being accompanied by "his lobbyist." While there were many of the characters I expected to find, there were also large groups that stood out. The three most distinctive were the large clusters of Harley guys decked out in full motorcycle gear, the Arts Council group respectfully linked by a large yellow button stuck to their shirts, and the women in Dr. Seuss clothes beside those with children's books taped to their heads.

At first, these sights were disorienting enough that I assumed these people were part of a play downtown, got lost and ended up in the wrong place. Of course, this was not true. It was my first taste of what Jack called "the theater" of government.

For the rest of the day, I would have the pleasure of meeting and talking to some of these characters. All of them were there to address a particular line item or two in the newly released budget. These were community lobbyists who had a mission and sought out the appropriate representatives to plead their case. Some groups were highly organized, with full color flyers, statistics, and appointments with many representatives throughout the day. Others relied on existing relationships with certain politicians and were happy to wait around all day to get a few minutes of face time. Some relied mostly on the costume to get them in the door.

Two things became clear to me on this day:

1. We, the people, do have a voice. We just have to learn how, where, and when to use it. (That's what I hope my book will help you do!)
2. For every line item on the budget, there will be individuals, groups and lobbyists with a convincing argument for why that money should be appropriated differently, not cut, or increased.

The state budget I saw had numbers so long I got dizzy. With nearly twenty billion dollars on the table, it would seem like there should be plenty to go around. Hardly. For every program that is trimmed, there are real people effected and fighting to maintain their jobs and the stability of their lives. For every argument for or against a budget line item, there are compelling personal stories, ethical considerations, and financial implications. The bottom line is, there is no easy answer. Ever.

The theme of many of my talks and approaches to healthcare revolves around this concept of "pulling back the curtain." This calls for humanizing the experience in order to understand the true complexities of human emotion and systematic limitations involved. If we want to move forward, we can not remain still, standing in one spot waiting for others to fix the problems to meet our particular satisfaction. We must be willing to levitate and look down at the entire picture from all angles. The purpose of this, of course, is to find ways to identify the flaws and capitalize on the opportunities while working together, as human beings who happen to be patients/family members/professionals, for the best experience possible.

What I was shocked to discover on the grounds of the legislative building is that this goal of "pulling back the curtain" is not at all different for politics. The flaws in our governmental systems are not hard to see. Corruption, self-interest, and the business of political "scratch my back now and I'll scratch yours later," is as obvious as the nose on your face. What also becomes obvious, however, is the genuine grey area of so many of the issues at hand.

One small example of a grey issue I saw that day was a bill trying to be passed that said a person had the right to use deadly force if a threatening stranger was on their property. This seems logical, we all should have the right to feel safe in our home. What this bill did not include or foresee was the risk it posed to some "strangers" who also have the right to be safe. Social workers and child psychologists, for example, are sometimes mandated to visit a home unannounced as a part of child abuse investigations. If a home owner perceives this professional may take their child from the home, they then pose a "threat." Does this give them the right to use deadly force on this professional? One would hope the state would say "no" but at the time of my visit, they had not recognized this as a problem with the bill.

For those who choose to become politically involved, frustration awaits. It is a messy process. However, a part of that mess is the need for, and lack of, first person accounts. The patient voice is needed. No, it is required. First, we have to understand the system and where our voices can be heard. Once we have done that, nothing should hold us back from telling our story. Our stories MUST be told. Let's pull back the big red ropes and walk into our own government buildings ready to be an essential part of the process. Let's make a difference when and where we can. Let's humanize government, shall we?

Wednesday, May 19, 2010

Time Out for a Longer Look at the "Battle" Metaphor

After the unexpected death of a friend of mine, my sister made the comment that I have known more people who have died than anyone, especially young people. That's an unfortunate side-effect of becoming a part of "the community." When you have the privilege of meeting so many amazing people living with chronic and serious illness, either online or in real life, you may have to find ways to say goodbye to them. Or, one day, they will say goodbye to you. It hurts and sometimes it feels like there is too much loss to bear. Even so, I wouldn't consider taking a step back from "my people" because these friendships are valuable, not to be outshone by the difficulty of death.

This morning I was reflecting on the language we use when talking to someone with illness or talking about them after they have died. One primary metaphor permeates: The Battle Metaphor. We provide encouragement to those we love with phrases like "You're strong, I know you can beat this" and "Keep on fighting, you have come too far to let (insert medical complication here) take you." Likewise, we use similar terminology after death by saying things like, "She lost her battle with..." or "she fought a good fight."

When I think back on my days on the ventilator or my days living with end stage chronic rejection, I try to imagine how I might "fight" in those circumstances. Nothing comes to mind. It is a one foot in front of the other place to be. The "fight" is literally in "being." There is no effort beyond that. I don't know how I could have changed what I was doing to honor a wish to fight. Nor do I think, had I found myself in a place where I was too tired/sick to continue, there would be anything wrong in "surrender," yet another battle metaphor and one that implies defeat.

A few days ago, I was talking to my chiropractor who I have known since before my first transplant (10 years ago). He was marveling at how long it had been since my second (6 years) and asking me if I attributed the better outcome of the second set to anything in particular. My answer was medical in nature: "I don't know but I would guess it has something to do with a better chromosomal match and perhaps the fact that I had a Nissen to prevent reflux. They have linked reflux and chronic rejection now." He looked a little disappointed. "But do you think it has anything to do with your attitude?" he said, "It could be your positive attitude."

I struggled to not sound upset. "I have known too many people who had better attitudes than me, worked harder than me, and wanted to live as much as me, and they are gone. I can't take any of the credit." He was quiet and my mind kept turning. "But," I realized, "While I don't think a positive attitude can reverse an inevitable, physical decline, I do think a negative attitude can accelerate, possibly even begin, a physical decline." Is that possible? Can the results of a person's attitude go one way and not the other?

The battle metaphor bothers me. It always has. It suggests a level of control over my physical body that I simply don't have. It suggests a failure on my part when I am not able to "fight hard enough" to reverse a disease, a complication, my own death. It suggests triumph for "survivors," people who have won the battle. I am not a survivor because that, in context, makes my some of my friends losers. When I imagine someone telling my mother I lost my battle with (insert my cause of death here) I shudder. Does that not suggest I could have done something more to win? Perhaps she could have done something more to inspire me? Perhaps my doctors could have worked harder to find ways to keep fighting? Unintentionally, the metaphor places blame on those who do not recover the way loved ones would hope and gives too much credit to those who are able to recover.

So what language could we use to replace this metaphor? First, we must begin by exploring the intention behind these words. When someone says to a patient "Don't give up!" what are they saying? Are they intending to say that if this person dies they will forever consider them a quitter? No, of course not. So what does someone mean when they say "Don't give up!"

I believe the deeper translation to this phrase is something along the lines of "please don't go!" or "I don't know what I would do without you!" They are imploring the patient to "fight" so that they do not have to suffer the loss. Other possible translations to similar battle metaphors might be:

"I'm scared!"
"I don't know how to handle this!"
"I don't know what to say!"
"I can't believe that you are so sick! I can't even believe this is happening!"
"I want you with me as long as possible!"

In addition, our culture caries many unspoken myths about the power of "letting go." If someone were to drop the battle metaphor and say something more authentic like "I want you here with me desperately because I love you so much but I know that may not be under your control. I will understand if the time comes for you to let go," our culture would likely judge and reject this sentiment. (That is, unless it is in the case of a person in hospice care and is surely days or hours from death. It is only at this time that we feel comfortable telling those we love that "it's ok to let go.") Just as we believe the power of positive thinking can alter a physical state, we fear that offering surrender will encourage and speed up a person's death. For this reason, we are trained to keep such "negative" thoughts to ourselves.

Crazy things do happen. People recover from things to the great astonishment of their healthcare professionals and loved ones. At the same time, this can not be, and is not, the case for everyone. Can we find language that does not carry with it so much unintentional blame/praise? Can we find a new metaphor?

I have some thoughts but none worthy of proposing publicly yet. I will keep thinking but in the meantime, would love to hear your thoughts!