Conceptual Framework for Patients and Families in the Transition from Acute Critical Facilities to Care at Home

Extended Abstract

The Atkinson Protocol: a Conceptual Framework for Patients and Families in the Transition from Acute Critical Facilities to Care at Home: a Startup Proof of Concept Project

Abstract

Background: In chronic and acute critical care for injury and illness, patients and families play a key yet underutilized role in the success of clinical outcomes. Often without warning, they must assume the roles of planner, advocate, coach, educator, researcher (PACERcare Person) in guiding their recovery, rehabilitation and return home.

Healthcare systems currently lack an accepted methodology for patients and families to formulate personal plans for managing a patient’s complex injuries or illnesses with many varied treatments and locations and over extended time periods.

 Objective: The Atkinson Protocol, a conceptual framework to guide patients and families, was developed to answer the following question:

“How were you, Charles Atkinson and your family, able to beat the odds and complete a roundtrip healthcare journey from the ICU to a life worth living at home, when 90% of patients with similar acute illnesses never exit the healthcare system?”

 Methods: The Atkinson Protocol was conceptualized by the patient, who is also the author and subject of this study. Charles Atkinson was a 76-year old healthy male when he suffered (fractured ribs, enlarged prostate, neuroinvasive WNV illness) with multiple hospital trips from December 2011 to December 2014.

 

The Protocol draws on Atkinson’s lifetime work as a psychologist, educator, technologist, entrepreneur, and healthcare businessperson in brain, mind and behavior. The Protocol was conceived, developed, tested and revised to document the process that guided his healthcare journey. It was imagined and conducted as a Startup Proof of Concept project study with Charles Atkinson as the Alpha test subject and the PACERcare Person.

 

A Beta test to replicate and test the Protocol was continued with the author’s daughter-in-law, an obese healthy 48-year old patient (ACL injury, brain aneurysm and hemorrhagic stroke illness) who, like the Alpha test patient, progressed from the MGH ICU to Spaulding Hospital Cambridge LTAC beginning December 2014, continuing to the present.

 

Results: The developmental testing application of the Atkinson Protocol for the patient and family leadership role in personal planning, family meeting agendas and creative problem solving in both the Alpha and Beta tests, assuming the role of PACERcare Person for each, resulted in a stable, feasible and successful conceptual framework to navigate the healthcare journeys, incorporating a sequence of nine key topic areas within a general program of Goals, Strategy and Structure.

 

The Atkinson Protocol provides a missing tool for patients and families to assume responsibility for framing interactions and sharing in decision making and solutions. The Protocol provided a common denominator roadmap for key topics and questions that guided utilization of personal clinical stories in plans.

 

 

Conclusions:

  • The Atkinson Protocol provides a roadmap for mobilizing patients and families to formulate personal plans, use connected technology, build a team, and tackle lifestyle priorities as they move through recovery, rehabilitation, and return home.
  • There is an opportunity to use the Atkinson Protocol and Internet technology to connect former patients with current patients and families to navigate the healthcare journey — one patient and family at a time.

 

 

Keywords: Alpha-test; atHome; Atkinson Protocol; Beta-test; healthy lifestyles; patient centered outcomes; startup proof of concept; self-agency; PACERcare Person

 

 

 

 

 

Introduction

In chronic and acute critical care for injury and illness, patients and families play a key yet underutilized role in the success of clinical outcomes. Often without warning, they must assume the roles of planner, advocate, coach, educator, researcher (PACERcare Person), in guiding their recovery, rehabilitation and return home.

 

There is growing emphasis on patient- and family-centered responsibility in the healthcare continuum — not only because patients increasingly want partnership roles in decision making, but because positive clinical outcomes depend on personal patient lifestyle choices almost as much as on clinical expertise and methodologies of providers.

 

In the face of this paradigm shift toward increased self agency, healthcare systems currently lack an accepted methodology to help patients and families make personal plans and manage a patient’s complex injury or illness with its many varied treatment modalities and treatment locations over extended periods of time. Patients and families lack the medical knowledge they need to conduct research, make decisions, and take responsibility for their own care. This imbalance in the capabilities, expertise, and experience of patients and families undermines their ability to assure their own health.

 

The subject of this study is the Atkinson Protocol, a conceptual framework for guiding patients and families in achieving critical self agency behaviors. It was developed to answer the following question:

 

“How were you, Charles Atkinson and your family, able to beat the odds and complete a roundtrip healthcare journey from the ICU to a life worth living at home, when 90% of patients with similar acute illnesses never make it home?”

 

Methods

The Atkinson Protocol was conceptualized by the patient, author and subject, a previously healthy and robust 76-year old male, to apply to his acute illness of WNV neuroinvasive illness with coma, encephalitis, flaccid paralysis, respiratory failure, neuropathy and nosocomial conditions from December 2011 to December 2014.

 

Study Setting

Our goal is to use the single healthcare journey of the patient and family to look deliberately at the complexity, uncertainty, volatility, and ambiguity of forward-looking planning to address specific problems as they inevitability occur during injury or illness and recovery. This approach reflects the reality and singularity of the difficulties, many unexpected, that arise in accomplishing positive patient centered outcomes.

 

The primary methodology of the Atkinson Protocol is to shape patient and family conversations among themselves and with their caregivers around questions which ask them to develop goals, identify strategies, and organize the structures they need to guide their healthcare journeys.

 

Study Development

The Atkinson Protocol was developed using an interactive process — first building a preliminary version, then testing it in a variety of applications, and finally revising and expanding it based on the results of the interactions.

 

It was conceived, applied, tested and revised to document the process that guided Atkinson’s healthcare journey. It was imagined and conducted as a Startup Proof of Concept project with Charles Atkinson as the Alpha test subject and PACERcare Person.

A Beta test to reproduce and test the Protocol was continued with the author’s daughter-in-law, an obese healthy 48-year old patient (ACL injury, brain aneurysm and hemorrhagic stroke illness) who, like the Alpha test patient, progressed after injury from the MGH ICU to Spaulding Hospital Cambridge LTAC beginning December 2014, continuing to the present.

 

Subject Background

The Protocol draws on Atkinson’s lifetime work as a psychologist, educator, technologist, entrepreneur, and healthcare businessperson in brain, mind and behavior applied throughout his life.

 

As a psychologist, Atkinson conducted reseach with B.F. Skinner at Harvard on the application operant conditioning to teach creativity. As an educator, his doctoral dissertation explored “Student Question-Asking In a Natural Classroom Setting.” As a technologist, he developed a conceptual framework for a database learning system. As an entrepreneur, he was the founder and CEO of seven companies. As a healthcare business person, he delivered large scale instructional systems globally for pharmaceutical sales training products in all major disease categories. The central theoretical source of models for the Atkinson Protocol came from the founding, thirty-five years ago, of the Whole Brain Corporation with Ned Herrman, and delivering workshops for major interventions at the Harvard Business School, the Singapore Institute of Management, IBM, and the Center for Creative Leadership.  These courses on “Understanding Self and Others,” “Team Building,” “Creative Problem Solving,” “Leadership and Management” and “Applying the Whole Brain Model” were the proving ground for the Atkinson Protocol.

 

 

Intervention

The Atkinson Protocol

The developmental testing of the Atkinson Protocol for taking a leadership role in personal planning, family meeting agendas, and creative problem solving in both the Alpha and Beta tests, resulted in a stable, feasible and successful conceptual framework for navigating healthcare journeys, incorporating nine sequential topic areas within a general program of Goals, Strategy and Structure (Table 1).

 

Table 1. The Atkinson Protocol.

Steps  Topics
Goals
1 Interest, Preferences and Passions
2 Roles, Responsibilities and Relationships
3 Philosophy, Values and Culture
4 Purpose and Mission
Strategy
5 Problems, Challenges and Opportunities
6 Hopes and Dreams
7 Ideas, Visions and Solutions
8 Evaluation Criteria
Structure
9 Implementation

 

 

The Atkinson Protocol Patient and Family Dimensions in Table 2 reflects the developmental testing and revision to incorporate specific values for each of the nine-steps. This summary version represents the common consistency that evolved from this iterative process.

 

Table 2. The Atkinson Protocol Patient and Family Conceptual Framework

Steps Topics
Goals
1 Interest, Preferences and Passions
2 Roles, Responsibilities and Relationships
a. PACERperson
b. Guardian
c. Family
d. Patient
3 Philosophy, Values and Culture
a. Patient Centered
b. Customer Driven
c. Technology and Innovation Enabled
d. User Friendly
e. Affordable, Available, and Accessible for all
4 Purpose and Mission
a. To take control and manage the healthcare journey from the ICU to home and lead a life worth living.
Strategy
5 Problems, Challenges and Opportunities
6 Hopes and Dreams
7 Ideas, Visions and Solutions
8 Evaluation Criteria
Life Competencies

(Apply to Steps 5–8)

a. Breathing and Beating (B+B)
b. Thinking and Speaking (T+S)
c. Eating and Drinking (E+D)
d. Sleeping and Resting (S+R)
e. Stretching and Strengthening, Moving (S+SM)
f. Learning, Communicating, Walking and Playing (LCWP)
g. Spending Time and Money (ST+M)
Structure
Implementation of Personal Transformation Plan
.
9 a. Infrastructure Foundation
10 b. Team for Patient Care
11 c. Proposal for Project
12 d. Project Management Targets and Milestones:
daily, weekly, monthly

 

Results

Charles Atkinson Alpha Test

Developmental testing and revision of the Atkinson Protocol based on the Alpha test with Charles Atkinson is shown in Table 3.

 

Table 3. Charles Atkinson Alpha test examples of patient and family initiated interventions using the Atkinson Protocol.

Life Competencies Month

Year

Location

Stage

Patient and Family Initiated Intervention
Breathing and Beating AUG 2012 ICU RACU 1. Family hope while comatose—Internet research found caringbridge.com for patient and family to share support during crisis. Otherwise the patient was toast and the family alone.
Breathing and Beating OCT – DEC
2012
LTAC SHC 2. Weaning or not weaning from the vent—Internet research with iPad finds WNV flaccid paralysis diaphragm. Patient and family persuade pulmonologist to restore the ventilator and many successes follow: got stronger, stayed in hospital with appropriate medical care longer, and qualified for PT, which enabled patient to start walking.
Stretching and Strengthening, Moving JAN – MAR 2013 LTAC SHC 3. PT strengthening and patient support—Patient and family resist physiatry forecast impossible recover and rehabilitation and progress and determination legs him get adopted by PT guru and progress never stops
Breathing and Beating;
Thinking and Speaking;Eating and Drinking; Sleeping and Resting; Stretching and Strengthening, Moving; Learning, Communicating, Walking and Playing; Spending Time and Money
OCT 2013 – DEC 2014 AtHome 4. Family decision to use care.com—Family used care.com and the internet in general to find caregivers at home who, together with the family provided 40 hours a week and 24/7 care for 14 months. Since not paid for by insurance it would have otherwise been unmanageable.
Stretching and Strengthening, Moving JUL 2013 LTAC SHC 5. Electrical muscular stimulation—College classmate who recovered from a stroke recommended electrical muscular stimulation and PT, and it jumpstarts patient’s right leg, beginning the first of 10 treatments.
Beating and Breathing SEP 2012 LTAC 6. Rejection of suggested ventilator for at home use—After two months of training and two weeks before planned departure, patient and family made a judgment that portable going to later company was not competent and had a crucial conversation to replace with the proven then later company otherwise patient and family were convinced that there be a catastrophe once home.
Sleeping and Resting SEP 2013 LTAC SHC 7. Hospital bed bought on eBay—Patient found Medicare hospital semi-automatic bed unsatisfactory and located a $17,000 hospital bed on eBay which he bought and had delivered using his iPhone for logistics and payment; otherwise the hospital bed would have been unworkable from the patient and family point of view.
Breathing and Beating NOV 2012 AtHome 8. breathing cessation solution — On the ventilator at night and not speaking, mucus clog stopped breathing. Used iPad to call French-speaking caretaker from third-floor to deflate the cuff (contrary to instructions) and unclog trachea within two minutes or patient would have suffocated.
Spending Time and Money OCT 2013 – Present AtHome 9. iPhone 6 Plus and Siri and connected Health technology — Able to function and live

To: learn, communicate, work and play with the configuration of technology that makes it possible for a “disabled guy like me” to function independently and be happily left alone for 72 hours at a time.

Learning, Communicating, Walking and Playing; Stretching and Strengthening, Moving OCT 2012 – Present LTAC and AtHome 10. Community health care givers — Arrange for caregivers in the community in the hospital to visit and during off-duty hours to come to the home to provide absolutely essential care, none of which was funded by the healthcare system.
Sleeping and Resting SEP 2014 AtHome 11. craigslist recycle of hospital bed — Arrange to recycle hospital bed as a gift via craigslist to 96-year-old in Marlboro, MA who was in pain from using a Medicare approved bed.
Atkinson Protocol Steps 1-7 DEC 2014 – Present AtHome 12. Facebook WNV Survivors support group —Using his smartphone and iPad technology patient has been connected to 900 fellow WNV survivors and is helping new patients with connections and recommendations that are the crowdsource summation.

 

Stretching and Strengthening, Moving MAY 2013 – SEP 2013 AtHome and Community 13. AlterG antigravity treadmill

— A friend visiting from Houston recommended the alterG that he had heard about on NPR. Patient tries it within a week and finds the increased physical therapy and capability was so incredible that, after sleeping soundly totally exhausted, he walked all around the outside of the house the next day. Continued use of the AlterG antigravity treadmill got patient walking and climbing stairs and was absolutely essential to improving strength and flexibility. New physical ability allowed patient to go back to Dublin, New Hampshire 10 times in the summer of 2014.

Learning, Communicating, Walking and Playing; Stretching and Strengthening, Moving DEC 2013 – Present AtHome and Community 14. Spaulding Hospital Patient and Family Advisory Council — Patient is now able to give back fully participating in the Spaulding Hospital Patient and Family Advisory Council, the arena in which he has developed the Atkinson Protocol and conducted the Startup proof of concept project.
Eating and Drinking MAR 2015 – MAY 2015 AtHome 15. Nutrition for his lifestyle — Using connected health technology, patient is now in touch with nutritional leaders such as David Perlmutter MD and Joseph Mercola MD. He has used the conceptual framework to understand the issues personally and solve them — in the last eight weeks since April 1, 2015 patient has lost 12 pounds and still losing.

 

 

 

 

Banu Bozkurt Atkinson Beta Test

 

Developmental testing and revision of the Atkinson Protocol based on the Beta test with Banu Bozkurt Atkinson is show in Table 4.

 

Table 4. Banu Bozkurt Atkinson Beta test examples of patient and family initiated interventions using the Atkinson Protocol.

 

Life Competencies Month

Year

Location

Stage

Patient and Family Initiated Intervention
Eating and Drinking Prior 10 years to DEC 2015 AtHome and Community 1. The status of being severely obese: 5’5″ and 250 pounds—The patient attempted unsuccessfully to use diet and exercise were unsuccessful. Patient suffers ACL injury from a fall on the terrace in December 2014.
Thinking and Speaking  FEB 2015 AtHome to ER to ICU 2. Brain aneurysm and hemorrhagic stroke—Patient and family in total shock and denial. Organize governing family Banu health team goals and establish a ‘family constitution.’ Agree on a mission of ‘to keep going until her heart stopped beating.’
Breathing and Beating; Thinking and Speaking;

Eating and Drinking

 

 FEB 2015 ICU 3. Family council establishes the patient’s father as guardian, husband as spokesperson, and father-in-law Charles Atkinson as PACERperson—The Atkinson protocol is adopted by the Banu healthcare team.

 

 

Breathing and Beating; Eating and Drinking  FEB 2015 ICU 4. Dire Predictions but Don’t Pull the Plug; Pull Out All the Stops – Family request all actions to be taken in spite of 5% prediction chance of ever becoming more than minimally conscious.

 

Breathing and Beating; Thinking and Speaking;

Eating and Drinking

 MAR 2015  LTAC SHC 5. Patient gradually awakens—Transfers to Spaulding Hospital Cambridge.
Learning, Communicating, Walking and Playing; FEB 2015 – Present LTAC SHC 6. WhatsApp for Communicating Among Banu healthcare team—Use of this technology provides 24/7 communication for family members and friends in Turkey, China, New York City, New Hampshire, and Boston. This technology is essential in allowing the team to plan, suggest technologies, and be together without boundaries (Patients and families without Borders), to propose solutions in meetings and implement them.
Breathing and Beating;
Thinking and Speaking;Eating and Drinking; Sleeping and Resting; Stretching and Strengthening, Moving; Learning, Communicating, Walking and Playing; Spending Time and Money
MAR 2015 – Present LTAC SHC 7. Patient and family working with doctors, nurses and staff to achieve impossible outcomes—A vigorous and robust interactivity between the patient, families and friends and their designated people created a collaborative effort that helped the patient achieve remarkable, unexpected progress.
Breathing and Beating;
Thinking and Speaking;Eating and Drinking; Sleeping and Resting; Stretching and Strengthening, Moving; Learning, Communicating, Walking and Playing; Spending Time and Money
MAY 2015 LTAC SHC HC with trips to MGH and BWH 8. Comprehensive plan with the goal of being ready to walk by August 6, 2015—Strategy to take maximum advantage of SHC long-term acute care and all of the interventions. Patient and family are full participants; cheering and excited family team members.
Eating and Drinking APR-MAY 2015 LTAC SHC 9. Bring weight down to acceptable range—Patient’s weight drops from 250 to 232 by April 16, but goes no lower even after meetings with registered dietitian. To reach goal of walking by August 6, 2015, patient must lose significantly more of the 115 pounds overweight. Family begins internet search and discovers ‘Liquid Hope’ whole foods for both enteral feeding and oral feeding. Weight loss to be continued.

 

 

 

Discussion

 

The Atkinson Protocol assumes that there will be a designated PACERcare Person to represent the patient and family to guide the healthcare journey.  Each PACERperson would serve in roles as Planner, Advocate, Coach, Educator, and Researcher and be selected as the best available person who has successfully survived a serious healthcare journey.

 

A paradigm shift toward patient centered, customer driven, technology enabled, user friendly, affordable, available, and accessible for all is in full swing.  In the context of this INTERNET of EVERYTHING there is great potential to make extraordinary and positive change to the whole healthcare system by mobilizing patients to take responsibility for their own healthcare journeys.

Principal Results

In all topic areas, results from the Protocol revealed clear differences between the Goals, Strategy and Structure of patients and families and the Goals, Strategy and Structure of clinicians. The results of this study are expected to have application for developing mutually supportive and shared Plan, Goals, Strategies,  Structures and Implementation for both clinicians and their patients and families.

 

  • Since 2011 and continuing until the present, the Protocol has been successfully implemented in both the Alpha and Beta tests to mobilize the patient and family in the areas they can control.
  • The Atkinson Protocol is a useful methodology for enabling patients and families to formulate a personal plan, use connected technology, mobilize their team, and tackle their lifestyle choices as the move through recovery, rehabilitation, and return home.
  • Results justify additional research and development testing on individual patients and their families and documenting the outcomes.
  • The Protocol proved to be a flexible and useful starting point for guiding personal patient and hospital medical interactions
  • There is an opportunity to create tools, formats, and job aids to simplify the use of the Atkinson Protocol and provide a standardized common-denominator format to compare outcomes

Limitations

The Atkinson model is based on methodologies and principles from multiple disciplines, including leadership development, psychology, and education. To test the validity of the Protocol, a consistent data input system must be developed so that multiple patient/family/hospital case studies can be accurately studied and compared.

 

Future Work

Health care systems are driven to achieve positive clinical outcomes — outcomes which are impacted by some factors they cannot control, including patient behavior and lifestyle.

The conceptual framework of the Atkinson  Protocol is a way of organizing and sequencing patient and family interactions, providing the job aids and tools for patients and families to take charge and ownship of their care. It is not intended to provide the intervention for them, but practical tools and aids for them to do it for themselves.

 

To be patient centered means just that, that patients and their families must take charge of their healthcare journeys for the roles that they alone can fill.

 

Conclusions

  • The Atkinson Protocol is a useful methodology for mobilizing patients and families to formulate personal plans, use connected technology, mobilize their team, and tackle their lifestyle choices as they move through recovery, rehabilitation, and return home.
  • There is an opportunity to use the Atkinson Protocol and Internet technology to connect former patients with current patients and families to navigate the healthcare journey — one patient and family at a time.

 

Conflicts of Interest

 

This is entirely funded by the patient during his rehabilitation at home.  There is no funding but there is a mutuality of interest to help current and future patients.

 

 

Abbreviations

ACL: anterior cruciate ligament

B+B: Breathing and Beating

E+D: Eating and Drinking

ER: emergency room

ICU: intensive care unit

LCWP: learning, communicating, walking and playing

LTAC: long term acute care

MGH: Massachusetts General Hospital

PACERcare Person: planner, advocate, coach, educator, researcher person

S+R: Sleeping and Resting

ST+M: Spending Time and Money

S+SM: Stretching and Strengthening, Moving

T+S: Thinking and Speaking

WNV: West Nile virus