On April 3, 2013, I gave my first TEDx: Integrity by Design at TEDxBarcelonaChange: Positive Disruption in Global Health
part of TEDxChange sponsored by the Gates Foundation

Join us as we build integrity by design to positively disrupt global health: http://www.integritybydesign.org

It was a humbling and brilliant experience. I am grateful to the #TEDxBarcelona team who hosted an outstanding, fun event and to my fellow TEDx speakers who inspired everyone! (Full speaker line up here: http://ow.ly/kAldv )

Thanks to our outstanding organizers Aurelie Salvaire Perrine Musset Johanna, rockstar coach Florian Mueck & the #TEDxBarcelonaChange team!  Very special thanks for ubuntu from my community whose contributions were invaluable. 

In early 2010, wondering whether there might be a way to bring together my work in health care ethics consultation-mediation with my prior love working in product/service design for e-health ventures (social enterprises before there was a social enterprise sector), I attended Unite for Sight's annual Global Health & Innovation Conference- a fantastic event overflowing with passionate social entrepreneurs doing great work around the world. 

Three questions emerged for deeper exploration:

1. Observation: Multi-stakeholder partnerships will be an increasing necessity to realize desired social impact.  In traditional corporate partnerships, there are lawyers advocating for their respective clients' interests when a partnership is established.  In non-profits, I surmised that failed partnerships meant an abrupt refocus and loss of the impact, since the use of donations for a lawsuit would not align with many non-profit's impact-focused missions.  

Idea: A partnership builder for multi-stakeholder partnerships for social impact would mediate the negotiation among the stakeholders to optimize the interest of the partnership.  The role of a partnership builder would be as advocate and nurturer of the partnership; the partnership builder would check in with the stakeholders to early troubleshoot any potential challenges and at the point of inevitable crisis, the partnership builder would mediate among the stakeholders to facilitate action and resolve disputes. With sufficient experience, a centralized resource, like creative commons for partnerships could be created, where DIY resources tools would exist for people to build their own multi-stakeholder partnerships.  This preventative conflict resolution approach benefits all stakeholders and enhances the likelihood of achieving the desired impact, and would most likely be deemed a worthwhile investment by a funder- whose interest is to see the partnership goals realized. 

Question(s): Would the stakeholders be interested in availing themselves of such a resource if it existed?  What sort of problems, if any, are any of these stakeholders already experiencing? Would it be possible to develop a niche practice for partnership builders?  What tools, skills, capacities would need to be developed to scale and democratize the practice?


2. Observations: In business every decision has implications.  Working at the intersection of meaning and money, the implications of business decisions often involve the targeted social impact.  

Question: Would there be an opportunity to laterally apply some of the relevant tools and learning of health care ethics (clinical and organizational) consultation-mediation in the context of the social enterprise sector? What are the relevant similarities and differences? Is the social enterprise market open and curious to receive this kind of resource or not?  


3. Observation: A large amount of impact investing money is being targeted at the "bottom of the pyramid."  Following the microfinance scandals, we know that sometimes these investor initiatives are not concerned about the interests of the poor.  New health care products and services are being deployed in areas where there are no existing regulatory frameworks to protect the human interests generally, and the vulnerable specifically.  

Question: Would there be an opportunity to work with social entrepreneurs who have health care products and services being deployed in developing markets where there are no regulatory frameworks?  How might we develop robust means to protect the human interests while not stifling innovation? How can people be empowered in the process of gaining access to health care products and services?


I spent 18 months on a learning journey to explore these questions.  The curriculum was emergent.  I determined the course as I went along, followed serendipity and learning opportunities.  I embarked on collaborations with people that persisted, some that failed.  I joined networks, worked on projects and hacked conditions to enable learning.  The learnings, ideas generated, connections made, unexpected discoveries and opportunities identified have iterated in conversations.  Now, I am making them concrete; I will synthesize my learnings from this deep dive inquiry into a series of posts with the aim that the report out encourages others to explore, stimulates discussion and inspires action.  

The topics explored cover multiple disciplines- some may be more or less relevant for the primary focus on this social enterprise focused blog. The timing coincides this month with an invitation and challenge from Steve Hopkins of the Squiggly Line- create a post for 30 days. Steve is one of the insightful, spunky people I met on the journey.  He is making the world epic! Follow him on Twitter (@stevehopkins) and to follow others writing for this challenge, check out  #b03 on Twitter. 


#b03 [Day 1]

In January 2011, after a journey that included an adventure into New York City after Newark had a power outage and closed all flights amidst a snowstorm, I arrived in Scotland for the first time. I spent two fascinating weeks learning about the various Scotland Projects of the International Futures Forum.  The full report is included here.  A series of posts featuring each individual project precedes this post.  Comments and feedback welcome! 

A series of recent articles and posts about prognosis brought this personal experience to mind. 

I found out that that my grandpa had late stage cancer two weeks before he died.  That was six weeks and a surgery after everyone else in my family found out that he had stomach cancer that had spread to 90% of his liver.  I was away at school and no one wanted to "burden" me with the news because my grandpa and I were very close.  They told me that the surgery was for an ulcer and that he would be recovered so that we could go for our much anticipated trip to Japan to participate in a YMCA Peace Conference that summer. After the surgery, the oncology surgeon reported to the family that he had "never seen someone alive with that much cancer." 

When I returned home at the end of term, my mother couldn't stop crying as she told me that grandpa had cancer.  I was in shock, "how serious?" 'Very.' "We should go then." 'We have flights to leave tomorrow.' When we arrived, he was in the hospital. His belly was distended and he was puffy like I had never seen him, or anyone really. He put on a good show for me, as he always did.  Just three months before, he had driven from Toronto to Connecticut for Easter to visit me at school; he brought me containers full of rice krispy treats and chocolate chip cookies and had come to see that I was "OK" at school. I was so happy to show him the school that I loved and to meet my friends.  Most of all, I was thrilled to see him, because I missed him most of all my family. Every spring and fall, he would come to stay with us for a couple of months; he was stricter than my parents but we also broke lots of rules and ate lots of good food.  Mostly, we would be together.  Me working on homework; he watching Japanese samurai soap operas on TV. Since I was away at school, I hadn't realized that he hadn't visited that spring or fall. 

One night in the hospital he awoke in a panic, confused about where he was. He tried to leave his bed in the middle of the night. When we arrived in the morning, we were debriefed about the episode and assured that he was being well managed. He was significantly more sedated. I noticed the chart at the foot of his bed said "full code."  I asked my Mom why he was full code, if he was dying of cancer, wouldn't we want him to die peacefully, not with his chest being compressed and heart being shocked.  It would be a violent way to die, which was inevitable at this stage. My Mom talked to my grandmother and they spoke with the doctor who added a "do not resuscitate" to his chart that day. From that night on, my Aunt stayed with him overnight. He died the next night.

The fortunate thing was that two days before he died when he was still lucid, I spent some time with him.  I read him the lyrics of a song "Turn, Turn, Turn," which it turned out is inspired by the passage of Ecclesiastes 3:10 "To everything there is a season and a time for every purpose under heaven."  That was as much as we spoke directly about death, and I told him that I loved him and thanked him for everything that he had given me.  He thanked me. I didn't know then why he thanked me, but he did. We said, goodbye to each other. No one else in my family said goodbye. I was 16. 

When he died, everyone in my family was surprised. They didn't realize that he was "that" sick. It turned out that my grandmother hid the severity of the diagnosis from the two younger daughters (mid 40s adults).  Even my mom, a retired nurse, had been on the phone the day before arranging to fly across the country for a week before coming back to spend more time. It always perplexed me that no one knew that he was going to die.

This video about the McGruck Effect struck me as potentially providing insight into what happens in the disconnect between patients/families and physicians at the end of life.

Physicians are trained to understand a patient's history, to make sense of shifting lab results and to assess the patient's physical condition.  Increasingly, the understanding of medicine lies in complex matrixes of testing, and the art of medicine remains in applying those normative figures to this individual patient.  Much to the physician's disbelief, my grandfather did not present for clinical testing until his cancer was more extensive than the surgeon had ever encountered.  He lived two months beyond that surgery, and in his whole life, he only spent two weeks in the hospital.  The two weeks at the end of his life.  What clinicians see in the hospital are clinical accounts, lab results and people at their most vulnerable and debilitated.  Clinicians are trained to value the medical facts over subjective perceptions of understandably distressed family member. It is no wonder that prognoses in clinical settings can be dire and inaccurate.

As physicians communicate their clinical observations to patients and their families, it is also not surprising that families may see something different.  While clinicians may explain the patient's status and family members may hear the information, family members will believe what they see.  Family members make sense of the complex and confusing information by privileging the information they gather from being with the patient.  Particularly in situations where a patient has lost capacity in some way, though debilitated, the family who frequently spend time with the person may see the person as more interactive and responsive than a clinician who visits only at brief intervals.  One of the reasons that nursing and junior medical staff are critical voices in morning rounds in the hospital setting is because they spend more time "hands on" time with patients; they often provide insight into these differing perceptions.  

This is one hypothesis of why things get chaotic when death approaches.  Everyone sees something different and the information that we know best is what we rely upon to create meaning.  Clinicians see a patient whose lab results are declining; families see their loved one still showing meaningful engagement.  Often both perspectives are accurate, relevant and important to a full understanding of how to make sense of the confusing information at the end of a person's life.

My professional aspiration to mediate conflicts at the end of life stemmed from this personal experience where I could see the different perspectives and that none were hearing each other.  I was fortunate to train with Nancy Dubler, who developed bioethics mediation as an approach to clinical ethics consultations from her experience that most of ethical dilemmas in clinical medicine were values conflicts that could be resolved by mediating in a conversation that leveled imbalances of information and power.  As we move care to the community setting and as the end of life is increasingly in care homes or community-based care settings, how can we bring this wisdom from the clinical setting to community delivered care?

How does it happen that no one knows?  Why do things end up so chaotic at the end?  

Excited to have lead article in Kaiser Permanente's Ethics Rounds, Winter 2010. 

This article presents a narrative about a painter visiting a museum to discuss the restoration of a painting as an analogy and provocative lens through which to explore the challenges of surrogate decision making.  The article offers a framework to support surrogates in the difficult role of serving as the voice of another.

Ettinger, KM. "The Art of Surrogate Decision Making." Ethics Rounds, Department of Medical Ethics, Kaiser Permanente Northern California, Winter 2010, Vol 20, Issue 2. Ethics Rounds

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I look forward to hearing comments and questions about the article, which you can download above.

Last week, I had the great fortune to participate in Health Camp as past of Health Innovation Week at Kaiser's Garfield Innovation Center.  An amazing day kicked off by Kaiser's visionary Jack Cochran, who heads the Permanente Federation and the dynamic Todd Park - CTO for HHS who invited hackers to envision new ways of seeing data using HHS data. 

In true innovation form, it was an unconference day. With everyone from entrepreneurial gamers to public health experts, clinicians to VCs, it was an AWESOME agenda created by the Health Campers. 

I invited people to join a conversation on Tech Tools for the Incapacitated Patient Alone- a person who lacks decision making capacity and who has no family or friends to assist them in daily living and/or in decision making in the clinical settings.  This is a front lines clinical reality and a highly vulnerable population.  Our unstructured conversation was dynamic and our group grew from 2 to 10 people curious and concerned about this unique group of patients.   

WHO?

We clarified whom we were talking about: People who have a disease condition that leaves them without decision making capacity (it may be Alzheimer's, aging, stroke, traumatic brain injury or developmental disability). With the increase in geo-mobility, increasingly people may become ill in an environment where they have no family, friends or adult children to provide care.  With advances in medicine, people are outliving their spouse and friends, and some may even survive their children, leaving them alone without anyone to represent their voice when they lose the capacity to make decisions.   

WHERE?

We explored the variety of settings where these people who rapidly become "patients" or "conservatees" of the system might reside and we considered how those environments might benefit from new technology.  People without capacity might be living at home or in a nursing home.  They might be acutely ill and in the hospital, and their circumstance becomes an issue upon discharge. 

WHAT? 

We  identified possibilities for technology to support this patient population from the clinical bedside to daily living in the community setting.  From household gadgets - is there a way to make a stove safe so that someone with fluctuating capacity can remain at home without being a risk to him/herself and neighbors? is there a way to use visual surveillance technology to allow people to safely remain at home while maintaining their privacy/dignity? are there better gadgets to detect & support decline that will make living at home longer possible for someone with fluctuating capacity? 


Thank you to all the people who participated!  This was an exciting & important initial conversation, and we look forward to it continuing! 

There is a "Post a Comment" link at the bottom of this entry for reflections, comments, and responses to the questions at the end.

Thoughts?  Reflections?  Reactions?  How can we best approach these situations?  What ideas do you have for technology tools that might help these vulnerable patients? When they are in the community? When they are in the hospital?

Originally published on www.elderethics.org on October 5, 2010

What is that? (Τι είναι αυτό;) 2007 from MovieTeller on Vimeo.



What is that? from Constantin Pilavios on Vimeo.

  Sometimes, pictures speak louder than words.  How often does this happen?

Transitions Case 4
Stepping Up Levels of Care: When is the right time and who decides?

After reading the case, visitors are invited to share how one might approach this situation. There is a "Post a Comment" link at the bottom of this entry and you may use the questions for reflection at the end as prompts.


Lois, a gregarious, charming 88 year old woman, lives with her cat "Pancake" in a multi-unit dwelling. Lois, a widow for 16 yrs, never had children and has survived all of her siblings. Her only family are great nieces and cousins (all of whom are in their 80s/90s) living in Australia. In her younger days, Lois was a patron saint of wayward animals (and a few stray people) and has a life tenancy with Pancake in her current home granted to her by a longtime friend and neighbor, Catherine, who had previously owned the building. A life tenancy means that she owns the right to live in her home, but she does not own an equity interest in the property.

Without any family, another longtime friend and neighbor, Jean, holds her power of attorney for finances and health care. Jean, her husband John, and other neighbors assist with "big" grocery purchases. With the assistance of her "cadillac," an electric wheelchair, she goes out to a nearby street to purchase day to day groceries and sundries. Other neighbors in the home drop in to visit every day or two, to make sure she eats. Her primary care physician, Dr. Anderson noted that if every elder had the "neighbors of the block" to support them as Lois had, we might do OK with our aging population.

Lois is severely limited in her mobility due to a combination of severe kyphosis (curvature of the spine), she is severely bent putting pressure on her stomach and lungs; as well, she has congestive heart failure, which leaves her breathless to walk across the room. Movement is quite difficult. She fell down the stairs 4 years ago trying to reach her "chariot," the cadillac, resulting in a broken collar bone and 6 week hospitalization and rehabilitation, but she recovered and now, manages at home independently with an aide, Lucia, who comes for 3 hours a day, 6 days a week.

Last week, Lois tripped over Pancake's water dish and fell in her bathroom. Her aide, Lucia, had arrived and was making breakfast. Upon hearing a "thud", she went to the bathroom where she found Lois crumpled on the floor, crying "ow". Lucia panicked and wanted to call the ambulance. Lois, not wanting to trouble anyone, insisted that she was fine, and with Lucia's help, Lois got herself up. Her face bruised around her glasses, and her right arm was swollen, she didn't appear to have any broken bones, just a very stiff neck and back. Lucia called Jean, the neighbor in charge of Lois's affairs. Jean stopped by on her way home from work, and surveyed Lois, Jean was quite distressed. Lois looked terribly battered and bruised from the fall and her movement, already challenged, now seemed riddled with pain and discomfort. Lois was adamant that she was fine, but by the next day as her back pain and stiffness increased, Lois was persuaded that a trip to be checked out at the hospital would be OK.

Admission through the ED and a full work up later, no broken bones were found but tests revealed a precarious spinal fracture that threatened instant paralysis if the bone moved the "wrong" way. Lois adapted to life in a neck collar, and by the time, it was ascertained that it was an older injury, Lois had been convinced that she needed to wear the neck collar and that only a slight movement was between her life as she new it and something quite dire. Nonetheless, dreadful bruising aside, she was recovering well and most anxious to return home to Pancake. It had been 7 days, and she was now at the SNF (skilled nursing facility), no longer actually requiring nursing level care, but not quite ready to get a "sign off" from the physical therapy part of the team, the team delayed her stay over a long weekend while addressing the question about where to discharge was addressed, the issue was whether to go to a facility where she would have more supervision and support, such as a nursing home or board and care, or whether it would be appropriate for her to return home to 24 hour care or the level of care she had previously.

Though in the hospital Lois was cared for by a team of hospitalists and specialists; her primary care physician, Dr. A, remained her primary doctor and strongly recommended that she be discharged to a nursing home facility. Concerned about her mobility, the potential danger of another likely fall, the amount of support she needed to attend to her daily activities, the physician did not think that returning home would be in her best interests. Based upon the observation in the hospital, this week's physical therapist did not believe she was capable of returning home.

Lois, on the other hand, was quite aware of her condition, and she believed that she was fine to return home. She was no less mobile than she had been in the past, other than the minor nuisance of a neck collar and the threat of certain death (or paralysis which for her would be like death) if she moved incorrectly, nothing had changed. Lois is determined to return to her comforts of home and Pancake, the cat, whose welfare she was charged with looking after by her dear departed friend, Catherine. Lois lacks the financial resources to afford a nursing home and feels confident that at home, where she has no expenses of rent, she can manage with her limited means until she will be 100. Lois, who is fiercely independent and prefers to care for others rather than being cared for, made her wishes clear, and was growing impatient to get out of the hospital.

Jean, her friend and surrogate concerned for her well being and safety, chose to support Lois's decision to return home. Jean had seen Lois home through much more dire situations, and while the diagnosis of the spine fracture had been scary, Jean is confident that Lois will be able to function at home. Jean favors more care, something that Lois disagrees with, and Jean intends to see if Lucia would increase her hours so that Lois would have more supervision at home. Though she has a roof over her head, Lois has limited means to support herself. Thus, suggestions to increase the hours of her helper are repeatedly rebuffed and she recently reduced a housekeeper from weekly to twice a month to manage her budget. Lois will not leave Pancake (the cat), and no care facility will take a cat. Further, Lois is extremely reluctant, even fearful, of leaving her apartment because it is the only "thing" that she has. With a life tenancy, she retains the right to live in the property until her death though she has no equity in the apartment. Given her limited resources, her housing presents an important asset and she intends to retain it as long as she possibly can and as along as she needs to care for Pancake, this is their home.

Dr. Anderson anticipates more trips to the ED, this is the 3rd this year, and thinks the care possible at home is insufficient. Dr. Anderson is frustrated by Lois & Jean's decision and feels uncertain about how Lois can be best cared for in this situation. Dr. Anderson questions Lois's decision making capacity and wonders what to do at this juncture. Dr. Anderson strongly disagrees with Lois returning home and wonders whether he would be liable for anything happening to Lois if she returns home under his care yet against his advice.

At what point, might it be appropriate for stepping up the level of care for Lois? What might that look like are they options - a staggered approach? Who makes this decision?

Questions for Reflection

How might one approach this situation?

What are the issues raised in this case?

Is this an ethical dilemma? If so, how would you articulate the ethical conflict?

Do you need any additional information? If so, what is it and why/how is that relevant?

What knowledge (ethical, legal, medical, philosophical) might be relevant for analyzing this case?

What framework might be appropriate to assist thinking through this case?

What might be a reasonable path forward? Are there multiple acceptable approaches?

How would each of the different perspectives justify their response?


Please leave comments, ideas, questions, and insights using the comments feature below. When you leave a comment, you may do so anonymously or with your name, but it would be very helpful if you indicated your role/discipline to assist clarifying your perspective. (RN, Geriatric care plan manager, family member, elder, caregiver, MD, MSW, Case manager, etc.)

Transitions Case 3
Stepping Up Levels of Care: When is the right time and who decides?
 
This case presentation experiments with narrative perspectives to set up the case.  After reading the case, visitors are invited to share how one might approach this situation. There is a "Post a Comment" link at the bottom of this entry and you may use the questions for reflection at the end as prompts.

Snapshots on a Day:  1

Elizabeth wakes up with a jump as the alarm blares.  Hmgh, she rolls over giving into sleep that beckons. Oh, it's Monday- a Center day, Elizabeth perks up.  She sits up in bed orienting herself in the room and enjoying the warmth under the blankets.  She pauses as she is about to get out of bed, suddenly recalling the events of last night.  No wonder she feels groggy this morning.  Oh well, it can't be helped it just seems to happen.

She struggles to recall what happened, ah, yes, she woke up needing to go to the bathroom in the middle of the night and her knee gave out as she was climbing out of bed leaving her stranded on the floor.  She used her lifeline call button - instructing the voice in the box NOT to call her children, rather the caretaker across the street.  Before too long, she heard sirens wailing and her little neighbor who has a spare set of keys to let the firemen in.  Never could understand why it has to be such a fuss, but they never seem to call the right people. She thought to herself.  The fireman insisted on checking her out and her little neighbor stayed until after the firemen had gone to help her finish on the toilet and get back to bed.  This responding fire unit recognized her and seemed to know her little neighbor.   Does this happen often, I seem to recall we've been here before. One of the firemen asked the neighbor. The 5th time in 2 months, her little neighbor responded in a matter of fact tone.  Oh well, at my age who is counting anyway, Elizabeth thought to herself.

Elizabeth pushes herself up to get out of bed, pauses to catch her breath and steady herself once upright, and shuffles to the bathroom.  As she brushes her teeth, the front door opens.  Lucy? Is that you? Goot Marning Meessus Elitabet.  Good morning Lucy.  Before long, the scent of brewing coffee seeps into the bathroom, farr you Meessus Elitabet. Lucy can you please help me with my hair, just look at this mess!  Lucy brushes the knots out of Elizabeth's brown hair and curles it to her shoulders.  I'm lucky I still have my own, Lucy.  Most of the women at the Center, well, my age period, they don't, you know, they have wigs.  Lucy continued to brush Elizabeth's course hair until it was 'just so' and then went into the bedroom to pick out an outfit.  Lucy, I'll wear my purple and green suit today.  Lucy reappeared with the purple and green suit almost before Elizabeth remembered finishing the sentence.  What a wonderful choice, Lucy, yes I think the purple and green suit will be perfect.  Lucy assists Elizabeth in getting dressed.  Then Elizabeth shuffles into the dining room where she sits down to breakfast at a table set with fresh flowers, the newspaper and a bowl of cereal and fresh berries.  Lovely, Elizabeth says breathlessly upon reaching the table. Where's my coffee?  Heer, Meessus Elitabet.  Lucy places the mug on the table.  I wonder what the program is at the Center today.  Oh, it's Monday.... Elizabeth hesitates, Oh, never mind, we'll see when I get there.

Meessus Elizabet time to go.  Oh!  Engrossed in the newspaper after finishing her breakfast, Elizabeth lost track of time and took a last swig of now cold coffee.  OK, let's go.  As she stands up, she puts her hand on the table to steady herself. Damn knee, she thought.  Then Elizabeth suddenly remembered last night.  That nice little neighbor had come, always hears the fire engines she says.  Maybe she'll come and visit me in the evening sometime, not just when the ambulance comes.  Stepping out the front door, she feels the ocean breeze temper the warm LA air.  I miss my friends back in Wisconsin, but Santa Monica sure beats the mid-west in winter!  She thought to herself, though she knew she complained endlessly about being here - the weather was something worth celebrating.  As she and Lucy stood waiting on the corner for the shuttle to pick her up, they saw the usual set of neighbors in and out on their various morning routines.  Up the street, John was washing his car.  Stan was walking his pug.  Sarah popped out from her garden gate.

Hi Elizabeth, Hi Lucy.  The little neighbor waved and approached them, and asked with a smile,How is everyone today? "Wonderful"

Goot marning Serrah, Lucy greets her with an ear to ear grin.


Great, I have to run to a meeting, so happy to see you looking well this morning. 

Sarah, do come by and visit me some evening.  


Of course, Elizabeth, I will soon.

As the car pulled away, Elizabeth suddenly remembered last night, Oh!  I didn't even say thank you, she thought to herself.

Lucy, did you know I fell again last night.  I tried to call you but your phone wasn't working.

Oh, deedant no you called.

Well, fortunately Sarah heard the sirens and let the firemen in, good thing she has a key or knows where the spare key is, does she have a key, well, then she helped me get back to bed.  Funny, she never says anything, as if it didn't happen. Nice young woman.

Lucy nodded. Thinking to herself that she listened to the sirens with trepidation, but stopped responding to middle of the night calls 2 months ago.  Lucy wasn't paid to come in the middle of the night and had grown impatient. Too many, too often, the girls needed to take responsibility for their mother and though Elizabeth said it was her knee, Lucy knew it was her drinking.

Snapshot 2

It happened again last night Jack.  Mom fell out of bed.  She is going to really hurt herself one of these days; this is getting ri-DICULOUS.  


You know there is nothing we can do, by the time we drive over there, it's what 40 minutes later and she's left lying on the floor wondering what is taking so long.  Remember last time, we just HAVE to let the fire department respond. 

If WE still lived down the street, WE could be THERE for her and respond, not like, RRRR. I thought the whole reason for Shyla taking over our house was to be CLOSER to Mom, then why the heck isn't she ever THERE?  And if she isn't going to ever be THERE, then why not get Mom into a nursing home? Why?  Why NOT?!  THIS is irresponsible, she's 88. This is CRAZY.  My d--- sister doesn't give a crap about Mom.

Look getting angry and into the bad blood between you isn't going to help you or your mother. 

Don't you start in on me now, aren't you on my side Jack?  


Of course I am but if you want to help your mother.

IF?  IF?  OF COURSE, I WANT to HELP her.  I CARE about her.  Why doesn't Shyla do something for ONCE!  I'm calling her.  


Don't do that. 

Don't tell ME what to DO, I hate you!  


OK, hate me, but call your mother and see how she is before you rail on your sister, ok?

Snapshot 3

Hello?

Shyla, it's Lydia.  


Hi Lydia, how are you? 

HOW am I?  How the hell do you think I am?!  I'm furious!  


What's wrong?

What's WRONG?  Don't you KNOW!

Know?

Mom fell again last night.

Is she OK?  Lydia interjected quickly with great concern.


Yes,

Lydia sighed with relief feeling her whole body relax not having realized it had tensed but acutely aware of the avalanche of pelting that was underway but not hearing what was being said.

She's OK, the question is WHERE are YOU?  And why don't YOU know about THIS? You are the first person on the Lifeline call list, you are the one who lives 2 doors away NOW, so where are you?  And WHY don't you know about this? 


Oh, I haven't check my voicemail yet tod-... 


Well, LIFELINE called you, then ME, and I'm wondering WHERE the hell YOU are because the whole point of having Mom here and you buying our house is that you can look after Mom, right? 


Well, yes, to be closer to Mom is part of it, Lydia.  I'm in the country right now, we're just about to harvest, so is Mom OK? 

Yes, she's OK.  


Good. Sorry you had to be woken up and to drive across town.

We didn't drive across TOWN, we let the Fire department go since the last time we went, Mom got hysterical waiting for us to get there, we NOW live 45 minutes away, REMEMBER.  And the last time, we went, Mom thought the lifeline had abandoned her - REMEMBER?


Oh, yes.  Well, Lydia, this is why we have Lifeline because we can't always be there. 

No but this is the 5th TIME in 2 months, don't YOU think we should see about MOM going into a nursing home or getting more extensive help?  This is dangerous!  


Lydia, Mom doesn't want to go into a nursing home; she's enrolled in a day health program and she's happy with that.  This is an imperfect situation, she's getting older, it isn't always graceful, but at least she's happy with this arrangement, and she definitely does not want to be in a nursing home - you know that.

Well, maybe it's our responsibility as her CARING children to make SURE that she is SAFE!  Oh, that's RIGHT, now you're the one who makes the decisions.

Lydia, Mom is doing very well at home, she has a thorough support system and she is happy to be at home.  You moved her out here to be closer against her wishes and she has been miserable - all of her friends are back in Wisconsin, well, those who are left of them.... to further confine her and restrict her for our convenience and peace of mind simply doesn't seem fair. 

SHYLA, this is NOT about MY convenience and comfort, nor is it about my peace of mind; you are going to see, mark my words... something tragic will happen to Mom.  God knows why she made you the one to make her decisions.  You DON'T CARE about her.

Lydia, of course, I CARE about Mom, I just have a different understanding of caring. 

Snapshot 4

Hello, Mrs. Lyon, how are you today?  Natalie, a case manager at the Adult Day program, observed Elizabeth's gate as wobbly, but unchanged as Elizabeth Lyon sat into the seat in front of her for their regular appointment.

Just fine dear.

How was the weekend?  


I had my granddaughter visit, she's home from college.  She's quite a charmer really.  We had a fun time and went out for dinner.

That sounds like fun.  And how are your girls? 


Oh, well, you know, it breaks my heart that they are still quibbling, you know, they won't speak to each other.  She sighed and looked despondent for a minute, then continued, But respectively they are fine.

I know that has been a source of distress for you.  Are you managing around the house OK?  Any changes?  


No, everything's just fine.  That dear Lucy comes to help me in the morning and afternoon, and everything else is OK.

Have you had any falls?

No ...   


OK, well, things seem pretty much the same.  I'll check in with Shyla as I do routinely, and oh, I see here that Lydia left a message.  


Did you have a fall over the weekend? There was a long pause.

Elizabeth searched her memory.  No, not that I can ... Oh, yes, just last night, I almost forgot.  Don't tell the girls, you know they'll just worry or fuss, you know, but I guess I did.  I got up to go to the bathroom and the knee gave out - it's the darndest thing...  Natalie listened as Elizabeth went through the story about the firemen and the neighbor... but don't tell the girls, I don't want them to know.

Natalie began gently, I know that you want to protect the girls and I want to make sure that you understand that the Lifeline Button calls both your girls homes before they call the fire department, only if neither child can assist you, then the fire department will come.

What?  The lifeline buttons tells the children, well, what a silly service.  I don't want that, the whole point is so that they won't be bothered.  I don't want the kids to know.  What am I paying for this for then?

Natalie continued, so the girls already know and from my records, it looks like this is the 3rd time this has happened in the last 2 months.  Elizabeth looked at Natalie blankly, and realizing that Elizabeth was overwhelmed, Natalie stopped, I guess you might be tired today?

A little bit, I don't know why, just a little fuzzy, maybe I didn't get enough rest last night. 

OK, well, I'll check in with the girls and I'll check in with you again later in the week.

Interested Parties presented here:

Elizabeth

Lucy, the part time caretaker

Sarah, neighbor

Lydia, daughter #1

Jack, Lydia's husband

Shyla, daughter #2

Natalie, Case Manager at the Adult Day Center

Questions for Reflection

How might one approach this situation? 

What are the issues raised in this case? 

Is this an ethical dilemma? If so, how would you articulate the ethical conflict?

Do you need any additional information?  If so, what is it and why/how is that relevant?

What knowledge (ethical, legal, medical, philosophical) might be relevant for analyzing this case?


What framework might be appropriate to assist thinking through this case?

What might be a reasonable path forward?  Are there multiple acceptable approaches? 

How would each of the different perspectives justify their response?

 
Please leave comments, ideas, questions, and insights using the comments feature below.  When you leave a comment, you may do so anonymously or with your name, but it would be very helpful if you indicated your role/discipline to assist clarifying your perspective.  (RN, Geriatric care plan manager, family member, elder, caregiver, MD, MSW, Case manager, etc.)

There are so many factors in this case-so many different people and perspectives involved.

One of the first things that I noticed about the case are the amount of assumptions (or ways that we think about a situation based on our perspective, often in a subconcious manner) made by each individual. These assumptions color the way in which they interact with one another and how they view the possibilities for responding to the situation. For instance, Elizabeth makes the assumption that because of her age, it is normal to fall a number of times. One of the assumptions of the first daughter is that caring for her mother involves making sure she is safe. As we attempt to come to an ethical plan of care we must remember that each individual will come to the conversation with assumptions. I feel like this point is a common starting point for ethical learning and yet the conversations I have encountered regarding care planning are often void of this realization.

Another element of the case is reflected by Elizabeth's inablity to remember. This information made me think about the process by which we decide when someone is incapable of making decisions for their own care. Often, memory loss occurs gradually-we have all experienced this in patient care. However, it seems that our decision to allow a patient to make the decisions about their care does not always reflect the same rate of loss of ability. In what ways can we improve the system to determine one's capability in relation to the gradual or quick change in mental capacity? Can we become more senstivie to the ways in which a participant/patient can still communicate about their care while still being responsible about keeping them safe?


October 8, 2008 at 01:37PM | Nicole Berry  |  edit  |  remove 
Nicole,

Thank you for your insightful comments.

Indeed, we often develop a perspective based upon partial information. When we don't realize our views are based upon assumptions, we may miss opportunities for seeing options and we may get 'stuck' in our limited view of the situation. A critical first step in developing a plan of care is to make sure that everyone has the same information and a shared understanding of the current situation and future trajectory.

Here, as you point out, there is a divergence in the understanding of what "caring about Mom" means. For Lydia, caring means to make sure that Mom is safe and protected, so that Mom will not experience a preventable injury. Lydia fears that if her Mom remains at home alone, her Mom will suffer a fall or incident that would leave her severely debilitated or even dead. Lydia recognizes that her Mom may not want a more restricted environment, but Lydia believes that it is in her Mom's best interests to have a more restricted environment in the short term in order to have the likelihood of living longer. Lydia seems concerned about being a responsible child and protecting her mother from physical harm.

One might say that she holds the view that her Mom's best interest is her safety and being protected from harm that could arise from being in an unmonitored environment. As you have noted, one might want to explore this understanding of "caring," whether she understands that even in a more restricted environment her Mom might experience a physical injury or death, whether her Mom's desire for independence has been a consistent theme expressed and to what extent honoring those wishes at this juncture may be important, whether there are other steps that Lydia might take to feel more comfortable with her Mom's safety that would not lead to moving her Mom to a more restrictive environment (having the house reviewed by an occupational therapy consultant, seeing about a home health aide in the evenings, etc).

For Shyla, caring appears to mean allowing her Mom the maximum amount of independence and keeping her Mom happy - letting her Mom make decisions and to live as she wants. Shyla recognizes that her Mom may have a fall or some other incident that might leave her debilitated; it appears that Shyla is willing to accept this short term risk because Shyla feels that a more restrictive environment at this time, when her Mom doesn't want it, would leave her Mom more depressed. Shyla wants her Mom to be as happy as possible at this juncture and feels regret about her Mom's sadness that resulted from leaving her friends in Wisconsin so the girls didn't have to worry about Mom so far away.

One might say that she believes that it is in her Mom's best interests to respect her Mom's decisions about her living environment and to honor her Mom's ability to accept the risks that the environment presents. One might want to explore with Shyla what in her mind might signal 'ready' for a more restricted environment and how she might approach a time when what her Mom wants is in conflict with what her Mom's actual needs are. Also, one might want to discuss with Shyla whether there might be a time when her Mom's decision making capacity might be impaired such that to honor her Mom's decisions would run the risk of 'abandoning' her Mom.

There remains an open question about whose responsibility it is to fill the "gaps" in care, such as the falls at night. Whether there is a self interest in not having to "worry" about Mom that justifies or prohibits placing Mom in a more restrictive environment. Also, who is the appropriate party to be responding to these falls - the daughters, the Fire Department (public resources), or someone else?

As you have recognized there is an indication of early memory loss that may, now or at some juncture, call into question whether Elizabeth has the capacity to make some decisions. At what point does a gradual loss of memory lead to a loss of decision making capacity is an issue frequently encountered in elder ethics and elder care. As you note, it is important to assess and reassess capacity as it may decline gradually, suddenly or fluctuate. An ethical priority is to honor a person with decision making capacity's right to make decisions about his/her well-being and care to the fullest extent possible. To honor the decision of a person who has decision making capacity is to respect a person's autonomy, but to honor the decision of a person who lacks decision making capacity is to abandon the person.

As a person's capacity begins to diminish, we approach decision making capacity with the question of whether a person has the capacity to make a specific decision. Decisions of greater consequence require greater decision making capacity. At home, in adult day health centers and in clinical environments, people recognize that elders are often more alert in the morning, and care givers often seek to address questions at these times when elders are most likely to have the highest capacity for decision making. Also, an additional approach to empower elders in determining their care is to assess whether there may be consistency over time even in the face of memory loss. As you have noted, improving systems to assess capacity in the changing state (gradual, in flux, sudden) and increasing sensitivity to maximize the opportunities to honor decisions when people begin to have diminishing capacity are important.

I look forward to hearing others' thoughts the issues you identified, these comments which reflect one of many approaches to considering these issues, as well as comments on other issues that remain in this case.

Mind the Gaps [whole document ]
Mind the Gaps Applied: Institutional/Systems [7 of 8]

Conclusion


In discussing this poster and working with people of diverse and vulnerable populations, I discovered that creating an inclusive space remains elusive, even for people who are committed to doing important work for social good. I offer a backbone for building capacity so that those who are committed to cultivating inclusive spaces might be able to realize their aspirations. 

Until we can fully embrace the truth of our wholeness, we may have difficulty gaining the trust of those who have been oppressed.  For if we hasten to challenge injustice, we bring our blindness, (we do not see ourselves in wholeness), deafness (we do not hear because we do not ask/listen) and arrogance (we ignore guidance from those we claim to help because we know better).  Masked by our good intentions, we may recommit the problems of the past as our actions contradict our stated intentions. Our actions, motivated by an unhealed state, are like shooting arrows at those we claims to defend.  

As a previously oppressed person, I may develop the capacity to deflect this arrow and realize that I am an unintended target. When no longer in fear and having healed any prior injury, I may ask the person who shot the arrow, “why have you shot this arrow?”  And the person, whose identity as ‘fighter against injustice’ is so strong that s/he cannot see that s/he could possibly shoot an arrow responds earnestly, “I did not shoot an arrow.”  The powerful force of cognitive dissonance blocks him/her from seeing an arrow, and s/he becomes indignant hearing the statement of an alternative perspective as an accusation, “I would never shoot an arrow.  I am not an archer, I am a pacifist.” … 

Mind the Gaps [whole document ]
Mind the Gaps Conclusion [8 of 8]
Mind the Gaps Applied: Individuals [6 of 8]

III. Mind the Gaps: Applied

The following two scenarios reflect the application of how one might apply Mind the Gaps to promote inclusive action.  The first scenario shows an administrator using the Mind the Gaps framework to consider how to address a conflict at the school.  The second scenario demonstrates how a proposed government action was evaluated under the Mind the Gaps framework and illustrates the responsive action that sought to promote conscious, inclusive action for social change.


B. Institutional:  Emergency Preparedness

In December 2005, the Center for Disease Control (CDC) hosted a teleconference proposing that local governments throughout the United States adopt “Community Legal Preparedness for Public Health Emergency” and expand the public health authority for an infectious disease outbreak, like avian flu.  During the Questions & Answers, I inquired how this proposed scheme to broaden authority would address the needs and protect the rights of people from diverse communities, such as those who didn’t speak English; there was a long pause, and someone attempted to respond but didn’t actually address the question. I wondered what an inclusive preparedness plan would look like?

Public Health Authority is the power that government has over the people to protect the public’s health.  The public entrusts discretionary power to the public health authority, and the proposal sought to broaden discretionary authority even further eliminating restrictions placed after historical episodes of misuse of authority over marginalized communities. I reflected on the response to my question about non-native English speakers and wondered who else might not be adequately included in a plan developed by people who aren’t thinking consciously about inclusion. Below are outlined some of the questions that I considered when thinking through how to make the CDC’s proposed course of action truly inclusive.

1. Gaps of Culture: Public Health

- What if the public health authority’s good intentions to protect the public good gets overrun by the politics of fear and discrimination in a time of panic and uncertainty?

- How does the public health authority intend to use their discretionary power?

- Is there concrete guidance on how to use discretionary power in difficult situations?

- What protections exist for the public, if we fail to meet our ethical aspiration to use our power well?

- What if the public does not trust the public health authority or it’s good intention? 

– what if the public health authority is not as good as it presumes to be and what has been done to ensure that the good intentions are realized?

Having done a critical legal history of public health’s treatment of vulnerable populations[1] during infectious disease outbreaks, I wondered whether the public health authority would be able to carry out its noble intention amidst the heavy political pressures that dominate, particularly in the initial stages of a public health disaster, when fear looms and science lags. I also wondered how those who do not trust the public health authority, or government in general, would be affected during a public health emergency and what the implications would be for the public’s overall health if some sub-groups did not follow the public health directives.  I also considered that getting funding and support for preventative efforts and for marginalized communities is nearly impossible, and I considered that if there were a collective interest, it might facilitate funding for inclusive policies.


2. Gaps of GPSE: Public Health

- How might people from different GPSE be affected during the critical stages? (awareness/prevention, screening, treatment, vaccination, quarantine)

- How will geography play a part in an epidemic? With regard to limiting access to treatment and spreading disease?

- How will political status influence the public health authority efforts?  What happens to non-English speakers, what happens to recent immigrants who are often scared to access public services in the US?  What happens to prisoners?  What happens to people who are not legal citizens?

- What social factors will influence the epidemic?  What happens to the elderly?  the elderly who are institutionalized in nursing homes?  What happens to a child whose only parent may become ill? 

- How might different economic status impact the public health authority plans?  How will the homeless be contacted?  How will the poor be impacted?  Will the need to eat and fear of job loss lead people who work rather than stay under quarantine?

Relying on my historical identification of marginalized communities and scenarios from the SARS outbreak in Toronto, I developed 5 scenarios and used them to identify who might be impacted but might not be considered in the planning events.

I identified the following groups seemed the most likely to be omitted from the traditional planning strategies: homeless, poor, persons with disabilities, persons who are institutionalized (prisons, nursing homes), children, elderly, illegal immigrants/immigrants (incl. language access).  These groups all have little political power and thus have minimal access to ensure that their interests are included in emergency preparedness endeavors and protected during times of crisis.[2]

In an infectious disease outbreak, the personnel of transportation become key players in a variety of circumstances so paying attention to the geography of a situation remains important. 
 

3. Gaps of Systems: Public Health

- Who is not adequately served by the current health care system?

- Will people who are illegal and fear deportation be afraid to come to the hospital during a pandemic?

- If the strategy is to use media to promote awareness and prevention, who will that miss?  How will people who don’t speak English learn of this?  people who cannot read?  people who cannot afford a tv/radio? people who are homeless?

- How do public systems, such as public transit, affect who may come into contact with an infectious disease and how does it inform the way that disease may spread?

I considered that the public health system relies on three critical systems – the public health authority/government, the health care system, and the media.  For people who have historically poor relationships with government, it is important to consider how they might respond/ignore the admonitions of government. 

The government and health care system systemically alienate certain members of our community, particularly illegal immigrants.  The fear that illegal immigrants have of government might prompt them to respond/ignore public health advisories in a way that would have significant implications to the overall health of the public.  Considering the manner and degree to which this community is alienated from the health care system, I wondered what would be necessary to promote compliance and trust in the public health directives. 

Most public health announcements are made through media channels, and I wondered what would happen to people who are not part of regular media.  Homeless people who don’t have a radio/TV, deaf people who don’t listen to the radio, illiterate people who can’t read a flyer, and announcements made in English would miss a number of community members who don’t speak English.


4. Gaps of Power Perspective: Public Health

- How does this proposed action reflect assumptions of my power and privilege?

- Where and how can I use my power most effectively?

I saw the greatest contribution I could make to support the “vulnerable populations” I identified was to speak to the group that I was a “part” of and to use the tool of my training, law and ethics, to suggest ways to guide this very broad discretionary power.  I developed an ethical argument to justify preventative policies that address the unique needs of vulnerable populations during a public health emergency.   To see what an effort for inclusion on this issue looks like, I made that paper into a poster, Vulnerable Populations During a Public Health Emergency[3], that was presented at the CDC’s Public Health Law Conference in June 2005.  When Hurricane Katrina hit three months later, the groups identified and the issues anticipated in the poster became a part of tragic history.  It is my hope that if we endeavor to use these steps rigorously and consistently, we can promote inclusion action for social change.

The opportunity here that I did not undertake due to my position (a student writing a paper rather than a policy maker) would be to invite the now identified constituents into the problem solving process to ensure that any subsequent actions, such as the proposed preventative policies, were not based upon the power perspective of the problem solver. 

In discussing this poster and working with people of diverse and vulnerable populations, I discovered that creating an inclusive space remains elusive, even for people who are committed to doing important work for social good. I offer a backbone for building capacity so that those who are committed to cultivating inclusive spaces might be able to realize their aspirations. 



[1] Ettinger,K. A Critical Legal History of Public Health’s Treatment of Vulnerable Populations during a Public Health Emergency.  (available from the author)
[2] This is not intended to indicate that this is the state of affairs at present.  Though reports indicate, overall emergency preparedness planning is not well developed.  As such, one wonders how much attention will be paid to the interests of marginalized communities in the time of a crisis and that was the purpose of this endeavor taking the focus that it did.
[3] Ettinger, KM. Vulnerable Populations During a Public Health Emergency, available at: www2a.cdc.gov/phlp/conferencecd2005/docs/kettinger.pdf

Mind the Gaps [whole document ]
Mind the Gaps Applied: Institution/Systems  [7 of 8]
Gaps of Power Perspective  [5 of 8]

III. Mind the Gaps: Applied

The following two scenarios reflect the application of how one might apply Mind the Gaps to promote inclusive action.  The first scenario shows an administrator using the Mind the Gaps framework to consider how to address a conflict at the school.  The second scenario demonstrates how a proposed government action was evaluated under the Mind the Gaps framework and illustrates the responsive action that sought to promote conscious, inclusive action for social change.


A.  Individual
As the principal of the private school where a bullying incident occurred, Mrs. M considers how a response to the situation might be most inclusive. 


1. Gaps of Culture


Mrs. M questions how the approach to handling the situation would appear to someone who felt uncertain about the school’s commitment to the girls’ education.  She wonders whether the private school status might make a student or parent uncertain about whether the discipline was based on wealth or on culpability.

She decides to call all the families into meet with each other and the administrators. She considers that this approach fosters the kind of open communication that the school advocates.  She wonders whether the parents may feel a perception of partiality since she has a conflict in complete neutrality for economic reasons, and she decides to hire a neutral mediator who can facilitate the conversation.  She considers that a mediator has the ability to foster dialogue and understanding and the practice of mediation/facilitation is generally accepted across communities.  To be certain, she asks all sets of parents whether they are comfortable with having a mediator present to facilitate the dialogue. 

She doesn’t consider that the remaining parents may have concerns about the situation, nor does she consider that the other students not directly affected may have residual concerns arising from this event. 


2. Gaps of GPSE

Mrs. M does not recognize any geographic considerations in this case, but there are political concerns.  Mrs. M recognizes that the two sets of parents involved between the instigator and the victim have vastly different political outlooks, social status, and wealth.  The instigator’s parents are wealthy, prominent business people with a lengthy lineage of family who have graduated from the school; the victim’s parents work in the public health and government, and both parents are second generation immigrants of comfortable means but limited wealth.  She wonders how to create a more level playing field for the conversation, and decides that it will be the work of the mediator to balance these disparities.

She does not consider that the two sets of parents come from vastly different backgrounds may have different experiences of justice in their personal history, nor that they might have different understandings of the cause of the situation and diverse needs to have a sense of justice achieved.  She does not consider that other students may identify with qualities of the victim and in turn from empathic identification they may experience a sense of ongoing fear from this event.


3. Gaps of Systems

Mrs. M was aware that her approach to this situation was dependent upon trust in the school’s handling of difficult situations as well as in trust in the mediation process.  She recognized the potential mistrust of the school’s commitment to discipline arising from the need for funding as well as the mission to educate its students.  To promote a sense of confidence in the school’s commitment to neutrality, Mrs. M chose to use a mediator. 

To inspire confidence for the handling of this situation, Mrs. M decided to work with a coalition of teachers, parents, and students to identify and develop a way to handle a future incident with consistency and transparent, while retaining flexibility. 

Mrs. M did not consider whether the victim’s parents who have a health background are familiar with mediation and whether they would be comfortable with mediation.  Mrs. M does not check to see whether the mediator has experience with multi-cultural conflicts and does not consider what qualifications the mediator might need to have to establish legitimacy with the parents.


4. Gaps of Power Perspective

Mrs. M reflects on her power in this situation and sees that while she has authority at school, she does not have authority over the parents and in many ways, she is accountable to the parents.  She considers that by inviting a mediator to facilitate the conversation she will enable the removal of any power conflicts that she might hold in this situation.

Mrs. M did not consider that her position could be perceived differently between the two parents.  While the instigator’s parents who are wealthy patrons of the school feel comfortable expressing their perspective and needs, the victim’s parents who do not have a strong economic relationship with the school do not feel equally entitled to ensure that their perspective is understood and their concerns are met.  She also does not consider that the victim’s parents are concerned about their relationship with the school and ensuring that their daughter will not have a difficult time, whereas the instigator’s parents do not even consider that stating their thoughts would have any implication on their daughter’s educational experience at the school.   These are difference arising out of the parents different power positions and the perspective of their privileges.  Mrs. M is not aware of her own privileged perspective and thus, is not able to be sensitive to the ways that privilege informs actions.

Mind the Gaps [whole document ]
Mind the Gaps Applied: Individual [6 of 8]
 Gaps of Systems  [4 of 8]

D. Gaps of Power Perspective

Assessing Gaps of Perspective, we consider how our power perspective informs the proposed action.  We often develop strategies for social change unconsciously informed by our power perspective, and we may not realize that others do not enjoy the same power, privilege, and position.  For example, if we choose to use a peaceful protest, we assume that others, whose rights may be the subject of the protest, will be comfortable demonstrating and exercising the right to peaceful protest in this manner.  But for some whose experience with the law reflects inconsistent or unequal justice, there may be less security in exercising one’s rights.   The exclusion of segments of interested parties reduces the inclusiveness of the action and may undermine the entire effort.  So, we must endeavor to consider how our experience of power, privilege, and position shape what we do, and we must reflect upon how we can use our power, privilege and position most effectively to share our power.

Mind the Gaps [whole document ]
Gaps of Power Perspective  [5 of 8]
     Gaps of GPSE  [3 of 8] 

C. Gaps of Systems

Assessing Gaps of Systems asks that we consider the inclusiveness of the systems upon which our proposed action depends and that we reflect critically upon the limitations of those systems.  For example, if we propose to communicate a message – upon what systems does our message depend?  We must consider how we will reach people who do not speak our language, who cannot hear/read, and to what extent there may be communities who lack access media.  Alternatively, if we locate a free mediation service at the court-house, we must consider whom our legal system serves and fails to serve and whether our efforts to provide alternative methods for conflict resolution might be limited due to the legal system’s limitations.  Ultimately, this aspect of Gap review asks whether we aware of the limitations of our existing systems and how we may create more inclusive systems.