Welcome to Humanizing Critical Care for Patients and Families

Our passion is to ensure that the Intensive Care Unit is a place where:

 

  • The patient’s and family’s needs are met.

  • They are treated with dignity and respect

  • They work in concert with clinicians as part of the ‘Patient Care Team'

 

With this in mind, our group reviewed the scientific literature as well as comments expressed by critical care survivors and family members of the ICU, and discovered that there exists a need to humanize ICU medicine.

Through funds provided by PCORI’s Pipeline to Proposal Awards Program, our work is to identify potential methods which may improve the humanization of ICU medicine. We are partnering with stakeholders:  ICU patient survivors, family members, physicians, nurses and other healthcare team members and researchers in a series of discussion sessions.  During these sessions, participants are encouraged to share their experiences and by doing so, assist to problem solve potential methods to improve ICU care.  

 

The partnership team will: 

 

  • Identify experiences and causes of dehumanization of ICU patients and family members; 

  • Explore and prioritize solutions to reduce dehumanization and increase compassionate patient-centered care 

  • Synthesize participants’ feedback into feasible comparative effectiveness research questions 

 

Our Advisory Board of patients, family members and healthcare providers, will offer input in developing a strategic and outreach plan, as well as assist to interpret, prioritize and translate the findings of our community meetings, resulting in high priority, feasible, comparative effectiveness research questions for future investigation.     

 

Our community meetings include stakeholders: ICU survivor patients, family members of ICU patients, physicians, nurses, and other health care team members and researchers.  Though topics of the meetings vary, but may include patient experiences with dehumanization, causes of dehumanization, potential solutions to dehumanization, ICU visiting hours, communication, patient well-being, presence and participation of family members, healthcare team member well-being, end of life care, and prevention of and treating post intensive care syndrome. 

 

After the community meetings, the Advisory Board will receive a summary and key findings; the next step will be to formulate our future objectives; in addition, information obtained will be transformed into testable research questions.   At the conclusion of the community meetings, we objective is to identify high priority, feasible comparative effectiveness research questions with a future goal to perform a comparative effectiveness research trial.     

 

For additional information on the PCORI Pipeline to Proposal Award for Humanizing Critical Care for Patients and Families, read on:    https://www.pcori.org/research-results/2017/humanizing-critical-care-patients-and-families

 

Our Team

I'm a paragraph. Click here to add your own text and edit me. It’s easy. Just click “Edit Text” or double click me to add your own content and make changes to the font. I’m a great place for you to tell a story and let your users know a little more about you.

EILEEN RUBIN, JD

Eileen Rubin, JD, is Founder and President of ARDS Foundation, and is also an ARDS survivor.

 

ARDS Foundation is dedicated to increasing awareness, providing education and offering support for patients and families, as well as facilitating research in the in critical care arena. As a member of the Society of Critical Care Medicine (SCCM) she chairs the Discovery Patient Engagement Committee is a member of Discovery’s Steering Committee.

 

A sought after public speaker, Eileen passionately combines insights gained from her own experience as an ICU patient, along with years of ICU patient and family engagement, and shares her deep understanding of the patient perspective with medical professionals worldwide.

 

Her mission is to ensure that the patient/family perspective is represented and is of the highest priority.

 

Ms. Rubin has contributed to eight published medical articles and has received research funding from the Agency for Healthcare Research and Quality (AHRQ), the National Institutes of Health (NIH-NIA), the Patient Centered Outcomes Research Institute (PCORI)

 

https://www.linkedin.com/in/eileenrubin/ and http://ardsglobal.org/leadership-team/

NEGIN HAJIZADEH, MD, MPH

Dr Negin Halizadeh is a pulmonary and critical care physician whose research focuses on using data to better inform and encourage shared decision making about treatments when patients become critically ill.

 

Her work focuses on ensuring that patients receive care which produces outcomes in line with their preferences and expectations. She is particularly interested in sharing predictable end of life events to ensure that patients with advanced chronic illness are better prepared to make these decisions.

 

Dr. Hajizadeh is currently working on two interventions aimed at helping ICU providers deliver the most compassionate care possible in the intensely stressful ICU environment by developing mindfulness based stress reduction skills. 

  

Dr. Hajizadeh has received research funding from the Agency for Healthcare Research and Quality (AHRQ), the National Institutes of Health (NIH-NIA), the Patient Centered Outcomes Research Institute (PCORI) and the Cystic Fibrosis Foundation.

 

For more information:  http://www.feinsteininstitute.org/our-researchers/negin-hajizadeh-md-mph/ 

MICHAEL WILSON, MD

Michael Wilson, MD is an Assistant Professor of Medicine at the Mayo Clinic School of Medicine in the Division of Pulmonary and Critical Care Medicine.

 

As a practicing ICU physician, he has cared for thousands of patients and their family members.  As an active researcher, he has experience engaging patients, families, nurses, and physicians in designing, pilot testing, implementing, and evaluating interventions to improve communication and decision making in the ICU. 

 

He teaches patient communication and ethics at the Mayo Clinic School of Medicine.  He is a member of the Patient Engagement Work Group of the Discovery Research Network for the Society of Critical Care Medicine.  He has been recognized with the Ziskind Clinical Research Scholar Award from the ATS and the Barbara Bush Distinguished Mayo Clinic Fellowship. 

 

For more information:   

http://www.mayo.edu/research/faculty/wilson-michael-e-m-d/bio-00097405 

 
 

Advisory Board

Susan East, ICU Survivor

Bossier City, LA 

Susan East is a three time ARDS survivor.  The first time she had ARDS was July, 2008 when she was 45.  The second time was July, 2014, at age 51.  Finally, last June, 2017, Susan had ARDS again at the age of 54.  She is a critical care survivor!  Susan has written a book that will be released soon.  She is a CASA volunteer, where she acts as a court appointed special advocate for foster children.  She is also on the Commission for Women of Bossier City and serves as Vice President.  Finally, she is President for Epsilon Sigma Alpha, where they raise money for St. June Children’s Research Hospital.   

 

Becky Felton, Family of ICU Survivor

Ord, Nebraska 

Becky Felton is mother of critical care survivor, Katie.  Her daughter was hospitalized in Nebraska with pneumonia, sepsis and ARDS in October, 2011.  Her daughter spent also a month in ICU.  61 year old Becky is a registered nurse with a background in ER, trauma, OB, med-surg, and orthopedics.  She is currently working as a school nurse, in order to be caregiver to her daughter.   

 

Lindsay Rose, Family of Lost Loved one in ICU 

Arlington, VA 

 

Lindsay’s mother, Linda, passed away on April 23, 2011 after a 6 week long excruciating battle with ARDS.  As a member of the Advisory Board, she looks forward to sharing the ICU experience from the point of view of a critical care patient’s family member.  Through this effort, Lindsay hopes to honor her mom in a way that would make her proud and also help others who are or will be in the same position experienced by her family. 

 

Lindsay is 36 years old and works in commercial property management as an Assistant Property Manager for 2 office buildings in Arlington.  She grew up in Northern Virginia and went to college at JMU, majoring in Marketing.  Family means everything to her and health and fitness are a major aspect of her life.  

 

Rebecca Vonharringa, RN Critical Care Nurse

Manhasset, NY 

Rebecca is a nurse in the Medical ICU at North Shore Hospital in Manasset, NY.  She has worked there for six years and has a total of 10 years experience as a nurse.  After being introduced to the idea of humanizing ICU care over the past few months, Rebecca said that it struck her because it is something she has been interested in but she sees it is lacking in healthcare.  Rebecca is eager to combine her experience as an ICU nurse with her passion to ensure compassionate patient centered care.  For more information: https://www.linkedin.com/in/rebecca-von-harringa-30b3a0b6 

 

Samuel M. Brown, MD 

Salt Lake City, UT

Samuel M. Brown, MD is Associate Professor of Pulmonary and Critical Care Medicine and Medical Ethics and Humanities at University of Utah School of Medicine and director of the Center for Humanizing Critical Care at Intermountain Medical Center. He is an active intensive care physician, treating patients in the Shock Trauma Intensive Care Unit at Intermountain. His traditional biomedical research focuses on the heart’s response to life-threatening infection, but he also works extensively to understand and transform the human experience of life-threatening illness for patients and families. His group have advanced understanding of long-term recovery from critical illness, the role of visiting hours and family presence during ICU procedures, the relevance of personality types to medical decision making in the ICU, and the physiology of stress for ICU family members. He is also an award-winning historian of religion and culture: his most recent book, Through the Valley of Shadows (Oxford, 2016), lays out a humanizing reform agenda for critical care. For more information: https://samuelbrown.net 

 

Gabriel Heras La Calle, MD 

Madrid, Spain

Dr. Gabriel Heras La Calle has been doing tremendous work on humanizing medicine in the ICU in Spain and his work is spreading to Europe and Central & South America.

 

Proyecto HU-CI: Humanising Intensive Care, an international organisation created in February 2014, already has more than 20,000 ICU professionals convinced that health care must be focused on the dignity of all its actors: patients, families and professionals. Their work has changed the health care model to care for all people: patients, users, families and health care professionals.  This has been accomplished through research, training and accreditation.  In 2017, they trained more than 10,000 health professionals and continue their outreach and awareness around the world, replicating their project in countries such as Argentina, Chile, Ecuador, Peru, Colombia, Brazil and Portugal. For more information: http://humanizandoloscuidadosintensivos.com/en/home/

 

COMMUNITY EVENTS

As part of the Humanizing Critical Care for Patients and Families project, we will host a number of round-tables with stakeholders.  These include ICU survivors, family members of critical care patients, physicians, nurses, researchers and other health care team members.

The agendas for these meetings will vary based upon the group of people, but may include:

     • Patient experiences with dehumanization.

     • ICU visiting hours

     •Communication between ICU staff and                        patient/family

     •Patient and Family well being

     •Presence and participation and interaction of            family with health care teamCommunication              between ICU staff and patient/family

     •Emotional toll of the ICU on all stakeholders.

     •Effects of post intensive care syndrome,                      including possible prevention and treatment

     •End of life care.

To date, we have had five community meetings.  The meetings included groups of people who were similar. ICU survivors were in another group. Family of ICU survivors were in another group. We hosted two meetings with ICU nurses.

From the data that we have gathered thus far, we will consult with our advisory board to summarize key findings.

As part of the Humanizing Critical Care for Patients and Families project, we will host a number of round-tables with stakeholders.  These include ICU survivors, family members of critical care patients, physicians, nurses, researchers and other health care team members.

The agendas for these meetings will vary based upon the group of people, but may include:

     • Patient experiences with dehumanization.

     • ICU visiting hours

      

     •Communication between ICU staff and                    patient/family

     •Patient and Family well being

     •Presence and participation and interaction of          family with health care teamCommunication          between ICU staff and patient/family

     •Emotional toll of the ICU on all stakeholders.

     •Effects of post intensive care syndrome,                  including possible prevention and                           treatment

     •End of life care.

To date, we have had five community meetings. The meetings included groups of people who were similar. ICU survivors were in another group. Family of ICU survivors were in another group. We hosted two meetings with ICU nurses.

From the data that we have gathered thus far, we will consult with our advisory board to summarize key findings.

 

RESOURCES

Sam Brown, MD, has a number of articles and documents related to humanizing ICU.

https://samuelbrown.net

 

Gabriel Heras La Calle has a website related to humanizing ICU. http://humanizandoloscuidadosintensivos.com/en/weve-got-a-plan/

 

Animal-assisted intervention in the ICU: a tool for humanization

https://ccforum.biomedcentral.com/articles/10.1186/s13054-018-1946-8

Failures in the Respectful Care of Critically Ill Patients: Prevalence and Risk Factors

https://www.atsjournals.org/doi/abs/10.1164/ajrccm-conference.2017.195.1_MeetingAbstracts.A1080

Seeking Humanizing Care in Patient-Centered Care Process: A Grounded Theory Study.

https://www.ncbi.nlm.nih.gov/pubmed/29028774

Speaking up about care concerns in the ICU: patient and family experiences, attitudes and perceived barriers.

https://www.ncbi.nlm.nih.gov/pubmed/30002146

 

Please let us know your thoughts

Eileen Rubin, J.D.,  President, ARDS Foundation

Co-Investigator, Humanizing Critical Care for Patients and Families,

Tel: 312-749-7047

  • Facebook - White Circle
  • Twitter - White Circle

© 2023 by PERSONAL TRAINER. Proudly created with Wix.com