Ideas that Impact
  • Ideas that Impact
  • SE101: Socent

Love: Paying Attention to Our Neighbors and the Weakest Among Us

14/2/2014

0 Comments

 
This beautiful love story about a math teacher using social network analysis to detect disconnection in the classroom reminded me of my 5th/6th grade French teacher, Madame Maker, who had a fierce, urgent love for us- her students. 

On the first day of class, we learned that the person sitting next to us would be our vocabulary partner.  And to our surprise, our vocabulary grade would be the lower of the pair, because "we have a responsibility to look out for the weakest among us."  Her indignation at poor French grammar rivaled the heated jeers of sports enthusiasts in a tense game.  "Pas DE" echoes in my memory whenever I think of her.  Yet this fierceness was love-- you could see by the same decibel of JOY she shared with each of her students' successes.  When you received 5 As (or 5 consecutive improved grades for those of us who were not straight A students but tried hard), you would get a choice between a homemade strawberry pie or a special chocolate orange from France.  Both were highly coveted rewards, because she was TOUGH. Achievement in Mme Maker's class was REAL success. 

Though feared by many- for me, she was a beloved teacher who cared about us enough to build our character, not only our vocabulary.  Her urgency came from living through WWII as part of the French Resistance in Paris.  She risked her life as a teenager to save the lives of others. Her fierce love was often misunderstood. As privileged children removed from war, we could not imagine what it means to experience social fabric disintegrate.  She had lived through and seen unspeakable horrors yet she inspired us with tales of narrow escapes.  Her name was Peter. (Her parents had wanted a boy. When they discovered she was a girl, they decided to name her Peter anyway.) One day, the Gestapo banged on her door.  "Peter, we know you are in there."  She was terrified- caught finally.  She opened the door.  The Nazi officers pushed her aside, "Where is he? Where is PETER?"  They turned her apartment upside down looking for "him."  Then left admonishing that they knew HE was working with the Resistance and would get him.  So her parents saved her life.  Her stories always showed how "good" can triumph and how the bad included the indifferent.  For her, it was the aggregation of indifference that allowed the unthinkable things to happen in France.  That's why she felt such urgency for us to be better humans in the smallest of our actions.  Mme Maker taught with passion; she embodied the truth that "a heart once touched by love is incapable of cowardice." (Cesare)  Her heroic efforts during WWII modeled courage and continue to inspire me to be vigilant on behalf of the weakest among us.  

Her unorthodox methods and passion, ultimately, got her fired only a few years from retirement.  It was a battle between wealthy parents on the board protecting their sensitive children versus parents protecting rigorous academics and a dedicated teacher under threat of being fired just a few years before retirement.  My first encounter in the school of life that with wealth comes great power and that grown ups do things from self-interest rather than what may be better for the collective.  My parents along with a few others fought the school on her behalf.  They lost the battle. Fearing that I would suffer retaliation due to their antagonistic stance against faculty leaders, I transferred to a new school for 7th/8th grade leaving behind my friends of 6+ years.  The irony is not lost that the teacher who taught me to pay attention to the weakest among us is the person with whom I first learned there can be a human cost of standing with the weak.  Fortunately, my new school was outstanding. New friends came easily.  I discovered my resilience and adaptability.  Most of all, I learned how to use power and privilege to stand with people who are vulnerable.  I would do it again-- and continue to whenever I see an opportunity. 

What the world needs today is courage, may love flow from your every step.  A shout out for all the teachers whose love shapes us!  
0 Comments

5<5: Social Enterprise Ethics #socentethics

30/4/2013

0 Comments

 
Picture

This post is one in a series of 5<5 posts that document pilot/prototype projects with the format 5 things that I wish someone had told me before I started in <5% of the time spent on the project.   


Background

Mission-driven and double/triple bottom lines demands accountability to multiple stakeholders.  Even with the best intentions and planning, most situations that one encounters in business cannot be predicted.  Doing "business" at the intersection of money and meaning requires navigating uncertainty and making tough decisions in complex conditions. 

SocEntEthics provides a framework to navigate these kinds of decisions by adopting an analogous approach to clinical medicine.  In medicine, physicians and clinical teams often face difficult decisions that require balancing benefits and harms, reconciling patient preferences and clinical options, and determining how best to proceed amidst uncertain outcomes.  Bioethical frameworks guide clinicians in navigating these difficult situations.  SocEntEthics empowers social entrepreneurs to create values-based frameworks and strategies to navigate uncertainties, to take effective action in complex situations and to negotiate values conflicts. 

Key Learnings
  1. Finding leaders who have insight that good intentions may not be sufficient to navigate the uncertainty and value-laden decisions at the nexus of money and meaning is rare.  
  2. It is JUICY when you meet someone who has the courage to build a vision of robust principled decision making into the operations of the enterprise/product from the outset! 
  3. Selling "certifications" makes it easy for enterprises to justify budget allocation for this kind of capacity building and peer/social pressure may drive adoption that creates a viable market for the "certification" product.  Duly noted that the viable business here may not transform how decisions are made and/or cultivate the capacity to make deliberate decisions-- so buyers and sellers should be aware whether they are opting for an approach that satisfies "compliance" and "checklist" needs or whether they are baking change into the core of their operations.  
  4. Waiting until integration of an ethics-driven framework is recognized as "necessary" may be too late.  A social mission enterprise that adopts a principled approach after things go wrong and/or after well into operations will have to fully integrate this approach throughout its operations and will need both bottom up engagement and top down commitment.  The effort and investment to rebuild trust and reformulate culture may be challenging and significant at this stage.
  5. Open source methods and strategies provide a template and idea source, but every enterprise is unique with its own culture and benefits from building its own values-driven framework that suits its operations. 
  6. At some point, when working through the "values" that underpin a socially-driven enterprise, there is a murky phase in the process.  It feels uncomfortable and nebulous.  People who like to "execute" get antsy.  This is a good time to take a break.  Normalize the inclination for "action" and "outcomes" and underscore the importance for the group to sit in the messiness of this uncertainty.  Go out for dinner, have drinks, take a walk, go on an outing to a museum. Tell people that it's normal to feel unresolved. Actually, it's essential. 

SocEntEthics Applied:

  • Operations: Policy Advisory Board


A social enterprise recognized the importance of this issue for its pioneering venture from prior to launch.  A policy advisory board was formed to support the team navigate these "tough" decisions.  The policy advisory board included multi-disciplinary professionals who represented the diverse stakeholders and constituents of the enterprise.  All policy advisory board reports and methods will be shared with open source/cc license. (currently in publication)

  • Operations: Conflict Management for Coworking Space
A social enterprise encountered challenging at a growth stage.  The enterprise chose to build a principled approach to conflict management into its operations. The team developed a set of principles to govern community engagement and invested in capacity building for staff and interns.  The methods and training resources will be shared under creative commons license. (currently in publication)


Original posts from Posterous at www.socentethics.com when this idea was initially launched can be found consolidated here. 

0 Comments

Ubuntu meets Wabi-Sabi

30/4/2013

0 Comments

 

While I was traveling in Southern Africa in February,  I experienced ubuntu ... a beautiful ethic/humanist concept of people coming together to help each other out... Read more about ubuntu philosophy (Wikipedia). 

Picture
I learned about ubuntu when our van broke down in Botswana... we spent 4 1/2 hours by the side of the road waiting for help-- the help that came was abundant! From the South, the manager from Elephant Sands Lodge heard about our situation and built a tow then came with a truck to tow our broken van...  At the same time from the North, the lodge in Chobe, where we would spend the night, sent a van for the passengers to ride in.  Another lodge sent a van and guide to assist us in crossing the border, while our guide stayed behind to look after the vehicle.  A few days later when we had a long drive back to Johannesburg, a couple of guides delayed their return home for a week's vacation to take us, because they thought it would be nicer and safer for us to ride in their van.  They explained ubuntu as the reason that they helped out our guide who had encountered a "matata" (a problem).   Matata are fairly common, and mostly people approach them with a smile and say with determined ease, "we'll make a plan."  


Picture
Recently, I experienced ubuntu personally while preparing for my first TEDx talk for TEDxBarcelonaChange: Positive Disruption in Global Health, part of TEDxChange sponsored by the Gates Foundation.  

I received incredible insight, wisdom, and tips from from my community.  Under the attentive eye of the magnificent event organizer and social innovation catalyst Aurelie Salvarie among other dedicated readers, 20 drafts of the script and many practice sessions later, I had a masters-level crash course in storytelling and public speaking.  

People shared their talent and time to assist in crafting an effective message.   From TED worth presentation guru Brooke Estin on visuals to Florian Mueck of the 7 Minute Talk as speaker coach, I was immersed in awesomeness with one single aim: to make a message that would touch and inspire people.  Less than 36 hours before, I had a raging fever and no voice.  Ironically, it was April Fools Day (April 1) and I thought if I call Aurelie to tell her, she will think it is a mean joke. It  was the participation of so many people in getting to that moment that buoyed my recovery.  When it was game time, I gave it my all. 

Wabi-sabi is a Japanese concept about perfection in imperfection.  This TEDx is raw rather than polished. I barely had my voice back and was desperately trying not to cough.  Wabi-sabi also underpins the idea.  Sometimes we have to step out, before we are fully prepared with all of the rehearsals that we need.  We have to experiment and improvise.  We go forward before perhaps things are perfect. Perhaps we don't feel ''ready.'  Yet we step out into life anyway, imperfect, unpolished. We are open to learning.  We are vulnerable and honest. it's that authenticity that makes the beauty that is wabi-sabi.  

May we meet each other in the beauty of authentic vulnerability and generous ubuntu.  Thanks to all who contributed to the experience of ubuntu both in Botswana and in Barcelona - what a blessing!

0 Comments

AgilEthics {idea post}

12/3/2012

1 Comment

 
After an afternoon visit with the fabulous Game Designer Marigo Raftopoulos, we cross-pollinated ideas at the intersection of games, fun and ethics... and identified this challenge: 



Challenge:  Can we create a fun way for game designers to think about ethics?
 

AIM:

  • To engage game designers in "ethics" 
  • To make "ethics" accessible
  • To make "ethics" fun


METHOD:

  • To make ethics a game
  • To create "ethical equations" (inspired by Chip Conley's Emotional Equations
  • To provide possible "variables" for the equations but to allow users to generate their own variables
  • To design a game that runs like CodeYear of CodeAcademy (one challenge a week) to build your own equation 


FRAMEWORK:

Awareness
Genuine
Integrity
Leadership
Excellence
Trustworthiness
Humility
Interdependence
Collaboration
Service

.... have other ideas for what guiding "principles" might apply? 

MODELS:

  • Chip Conley's Emotional Equations.... what are simple ethical equations that anyone can apply when deciding what to do
  • Create a comic strip to demonstrate how the ETHICS equations apply to a game designer (create 3-4 models)
  • Make a do-it-yourself AgilEthics comic strip toolkit .... Maybe something like (www.drawastickman.com)
  • Agile design: quick testing of ideas and iterative development of one's own ethical equations
..... have other models for us to check out?

APPROACH:

Step 1: Proposed Model Equation + Optional Equation Elements
Step 2: Player Modifies the Equation 
Step 3: Modifications reveal scenarios
Step 4: Player sets Equation
Step 5: Results 
Step 6: Loop back/Follow up for feedback & evolving equations (leave room for second and third thoughts...)
1 Comment

Learning Journey Loopback [1 of #TBD] {wildflower seed}

1/3/2012

2 Comments

 

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]
2 Comments

#socentethics {originally on Posterous)

9/6/2010

0 Comments

 

SEE Change: SocEntEthics (splash-landing page)

After incubating this idea for awhile, I am jumping in feet first - splash!

For #socentethics, we are designing a method that allows flexible, precise action adaptable to the diverse core values of social enterprises. 

Our aim is to empower social entrepreneurs to act with integrity at every step from start up to scale.  We want your inspired action to calatyze your investors, funders, supporters, and customers so that you can grow your mission to change the world!

Join us in be the change, so that we can SEE the change:

 #Excellence

 #Trustworthiness

 #Humility

 #Integrity

 #Collaboration

#Socialchange

Next steps:

1) Funders/Collaborators: Who should we talk to:

  • Are there funders who want to support building the foundation of integrity in the new marketplace?  We have lots of great intention and a flow of passionate, patient capital- our aim is to maximize the benefit! 
  • Who else is in this space and how can we work together to leverage our expertise & passion?
  • Are there ventures already off the ground that whose market we complement? Please connect us!
2) Partners/Referrals: Please refer social entrepreneurs or social enterprises for crisis consultation and/or to work with us as a case study as we  proto-type the SocEntEthics method

3) Questions/Comments: More posts to follow on the opportunity, the method, and the plan forward... let us know what you want/need to know to get on board with SocEntEthics .... together, we will SEE the change.

About SocEntEthics

empowering social entrepreneurs to act from core values when faced with tough decisions

SocEntEthics, supports social entrepreneurs negotiate the tough decisions inevitable when doing work for the greater good with limited resources.

As a social entrepreneur and a health care ethicist, Kate Michi Ettinger values a concrete, pragmatic approach to ethics.  With SocEntEthics, Kate cross-pollinates her passions for innovation, social enterprise, systems-level analysis, and ethics into a synthesized approach for social enterprise ventures to express their values in their action.  SocEntEthics is developing as L3C (low-profit limited liability corporation), in order to demonstrate by example and learn with its users as a "greater good" venture with a sustainable revenue model.

Our aim is to build a platform that guides SEs through a systematic analysis of a dilemma, allows SEs to share frameworks and strategies for negotiating ethical dilemmas, enables SEs to collaborate on tackling challenging dilemmas of scale/setbacks/geo-political origin, and empowers SEs to identify ways to transcend dilemmas while remaining true to their SE's mission. Re-envisioning ethics in a proactive, integrated approach allows a SE to act with iterative process and moved beyond judgements of right-wrong/good-bad. The SocEntEthics Method asks tough questions and explores uncertain terrain while emphasizing ethical dilemas in their narrative, integrative, collaborative and empathic context.

A robust ethical underpinning is integral to the fabric of social enterprises. SocEntEthics aims to empower social enterprises with the tools, skills and resources to:

  • act in alignment with your core values & social change mission 
  • excel in social change impact without compromising your ideals
  • negotiate tough decisions inherent in social change with integrity and compassion
  • steward your social capital resources with trustworthiness 
See here for more information on: our services, in the news, support our venture.



SocEntEthics Team

Ethical dilemmas benefit from multiple perspectives.  As an ethics consulting service, SocEntEthics is building a global team that includes social entrepreneurs, social change agents, artists, integrated leadership experts and ethical expertise.  Together, our team, is designing a SocEntEthics model that can serve as an ethical foundation for any social enterprise venture although our initial focus will be on social enterprises for health.

Team includes: 

  • Kate Michi Ettinger, JD, managing ideator for SocEntEthics consulting team, brings expertise in bioethics, law and conflict resolution combined with product design experience as a social entrepreneur. These lenses shape her perspective in creating this ethical advisory resource for social entrepreneurs.
  • ADVISORY BOARD: Putting together an advisory board to be our external agitators & conscience.  If you are interested or would like to nominate someone, please drop us an email at: info @ [domain] .com
  • CONCEPT CREATORS: Building a network of passionate innovators, social entrepreneurs, social venture investors and multi-inter-cross-disciplinary change agents to help us build the platform & move this forward.   If you are interested or would like to nominate someone, please drop us an email at: info @ [domain] .com
  • TECH & DESIGN Team: Looking for developers, artists & designers to assist us getting this up and running!  If you are interested or would like to nominate someone, please drop us an email at: info @ [domain] .com
We are building our team.  To get involved please follow us on Twitter @socentethics  #socentethics. 



SocEntEthics Services


SocEntEthics is developing an innovative platform for navigating ethical dilemmas and implementing a sustainable approach to our ethics consultation services.  We partner with our clients to deliver an integrated ethics program tailored to your social enterprise venture.

We offer consulting through appointments and drop in office hours to discuss issues you have encountered and those you are facing.


Our consulting services are flexible and may combine any services:

1. SocEntEthics Core Integration
  • SEE Integrated Optimal Action Plan 
  • SEE Decision Impact Audit


2. SocEntEthics Issue Specific & Crisis Consultation
  • Issue Specific/Crisis Consultation


3. SocEntEthics Tools, Skills, Resources
  • Tools
    • SocEntEthics Method
    • SocEntEthics Platform
  • Skills Training
    • Navigating Uncertainty
    • Skillfully Applying the 3Ps (Power, Privilege, Position)
    • Negotiating Values Conflicts
  • Resources


The SocEntEthics Method/Platform  is in development.  At the outset, we will work with 10 social enterprise ventures as case studies.  If your social enterprise would like to partner with SocEntEthics as a case study, please DM us on Twitter with a link to your venture and/or email address. 


Sustainability

Our economic model aims to model the ethos of this endeavor with a fierce commitment to Excellence, radical Transparency, daring Humility, and to challenge the status quo of current assumptions about Integrity, Collaboration and Social Justice.

Our goal is to develop a sustainable revenue stream to support the technology platform and to drive innovative applications for #socentethics. We will measure success by accountability and activity. Our aim is to impact the greater good and redefine ethics --> #socentethics. Ou commitment is to model our message and demonstrate our products.

In order to promote integrity & accountability and to provide high quality services at a lower cost with broad impact, social enterprise ventures who partner with us for consulting services will be invited to release learning from our consulting services that can be provided in a redacted form as case studies.  The redacting process allow clients anonymity including sector and geographic changes while allowing SocEntEthics to leverage its talent for maximal benefit of social enterprises.  


Details

SocEntEthics Core Integration

  • SEE Integrated Optimal Action Plan 
    • Facilitate outcome-focused integrated ethics plan across all levels of SE
    • Provide skills & resources for optimal actions
    • Support SE through implementation
    • Issue-specific consultations
    • Ethics Quality Improvement
      • Deliverables:
        • Integrated Optimal Action Plan
        • Skills & resources to achieve OA
        • Implementation & Crisis Support
        • Outcome Evaluation & QI Planning
  • SEE Decision Impact Audit
    • Facilitate analysis of decision impact on relevant stakeholders
    • Identify strategies for action that align with integrated OA plan
    • Explore alternative options, reasoning, impact, opportunities
      • Deliverables: 
        • Facilitated Decision Impact Discussion
        • Decision Impact Report
2. SocEntEthics Issue Specific & Crisis Consultation

  • Issue Specific/Crisis Consultation
    • Facilitate identification of the issue
    • Identify strategies for action that align with SE values
    • Explore alternative options, reasoning, impact, opportunities
      • Deliverables: 
        • Facilitated Issue Discussion
        • Issue Consult Report
3. SocEntEthics Tools, Skills, Resources

  • Tools
    • SocEntEthics Method
    • SocEntEthics Platform
  • Skills Training
    • Navigating Uncertainty
    • Skillfully Applying the 3Ps (Power, Privilege, Position)
    • Negotiating Values Conflicts
  • Resources
0 Comments

Anatomy of Chaos at the End of Life  

18/7/2008

0 Comments

 
Originally published on www.elderethics.org on March 5, 2012

Anatomy of Chaos at the End of Life  

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?  

0 Comments

The Art of Surrogate Decision Making

16/7/2008

0 Comments

 
Originally published on www.elderethics.org on December 1, 2010

The Art of Surrogate Decision Making

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

------

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

Incapacitated and Alone: Tech Tools for the Most Vulnerable

14/7/2008

0 Comments

 
Originally published on www.elderethics.org on October 13, 2010

Incapacitated and Alone: Tech Tools for the Most Vulnerable

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?



0 Comments

What is that? 

13/7/2008

0 Comments

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

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

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?

0 Comments

Homebound in Pain: Pain Management in the Community Setting

10/7/2008

0 Comments

 
Originally published on www.elderethics.org on May 20, 2010


0 Comments

Transitions Case 4

9/7/2008

0 Comments

 
Originally published on www.elderethics.org on January 12, 2009

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.)

0 Comments

Transitions Case 3

8/7/2008

0 Comments

 
Originally posted on www.elderethics.org on October 6, 2008

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.)

COMMENTS

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.

0 Comments

MOXY 2 Be

5/7/2008

0 Comments

 
a community blog for sustainable leadership in engaging change by young adult changemakers 

In May of 2008, I joined the Venerable Thich Nhat Hanh and the Plum Village Sangha for a retreat on 21st Century Engaged Buddhism and a UNESCO summit on Buddhism's Contributions to Social Justice.  We were inspired to be in Vietnam, where engaged Buddhism was born in the midst of the American-Vietnam war.
Picture

At the time, a young monk, Thich Nhat Hanh began to work with a young lay university student who was passionate to tend to the social issues- poverty, health care, education- in the midst of war.  A group of 6 young adults also concerned by these social issues received lay ordination with 14 mindfulness trainings to guide themselves in this work- in order to engage in their social work from a place of peace within themselves and with the aspiration to stop cycles of violence.  Learn more from the riveting memoir of Sister Chan Khong, the young woman who later became a nun: Learning True Love.


In a retreat of 400, we were more than 40 young adults under 35.  We were deeply inspired and motivated to be the next generation, the digital, web 2.0 version of SYSS.  With a squarespace site and some basic resource sharing, we launched a digital refuge and resource for our global young adult community in June 2008, under the name: MOXY2BE (Mindfully Organizing gen X and Y to BE).  

Picture
Our aim was to create a globally accessible web 2.0 capacity building resource and school that embodied what Ven. Thich Nhat Hanh and Sister Chan Khong started with the School for Youth Social Services more than 40 years before in the midst of war.  We were passionate to support ourselves and each other to approach our work for social change, social justice, social transformation, social work with peace at the base. The capacity building and sustainable leadership resources that were identified at that time are included on this blog under capacity building 101. 


By late summer of 2008, Thay gave the group of young adults gathered a calligraphy and the "Wake Up" movement began as a magnet for young adult changemakers.  Within a short time, the monastics developed a more sustainable, internally hosted site for our young adult community to be connected.  With that, the Wake Up movement was born and now flourishes all around the world, learn more here. 

There is nothing as exciting as seeing an idea whose time has come- be fully embraced with a flourishing community! 

0 Comments

Minds the Gaps - Scribd

15/3/2008

0 Comments

 
This paper is shared under a creative commons license 3.0 Attribution Non-commercial Share Alike. 
Available for download via the link below.

Picture
Personal Reflection 

1. Engaging Change
2. Gaps of Culture
3. Gaps of Geo-Political-Socio-Economics (GPSE)     
4. Gaps of Systems
5. Gaps of Power Perspective
6. Mind the Gaps: Applied to Individual
7. Mind the Gaps: Applied to Institutional/Systems Issue
8. Mind the Gaps: Conclusion


mindthegaps.pdf
File Size: 167 kb
File Type: pdf
Download File

0 Comments
<<Previous

    part of Kate's Mural

    idea incubator & 
    prototype lab 
     . . . architecting hope . . .  


    Featured
    Guest Posts
    101
    21st Century Career
    Changemakers
    Creative
    Design
    Ethics
    Learning
    Leadership
    Life Lessons
    Social Impact

    Sectors
    Aging
    Education
    Health
    Macroscope
    Social Enterprise

    Themes
    Wildflower (thoughts)
    Idea (seeds)
    Prototype (experiments)

    Failures
    Fun
    Future/Innovation

    About this blog
    About Kate
    View my profile on LinkedIn
    Picture
    All writing licensed by
    Kate Michi Ettinger and guest contributors under a
    Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

    RSS Feed

    Archives

    April 2016
    March 2015
    January 2015
    March 2014
    February 2014
    January 2014
    October 2013
    May 2013
    April 2013
    February 2013
    November 2012
    August 2012
    April 2012
    March 2012
    February 2012
    January 2012
    December 2011
    March 2011
    September 2010
    August 2010
    June 2010
    November 2009
    October 2009
    July 2008
    May 2008
    April 2008
    March 2008
    February 2008
    October 2007
    July 2007
    June 2007