July/August 2010, Issue 34

Hospitals and Communities

Moving Forward with

Patient- and Family-Centered Care

An Intensive Training Seminar ~

Partnerships for Quality and Safety

             Early Bird Registration

         Open Through August 20th!


November 1-4, 2010 Pinehurst Resort
Village of Pinehurst, North Carolina

Obama Administration Proposed Rule to Ensure Visitation Rights for All Patients ~ Comment Period Closes August 27, 2010
The Campaign for Better Care's Forum ~ Building Better Care: Improving the System for Delivering Health Care to Older Adults and Their Families
An Open Letter to ICU Nurses About Partnership and Collaboration with Families
North Carolina Seminar Participants ~ Sign Up For Special Events!
Institute Collecting Information on Hospital Visiting Policies and Family Presence
Institute for Patient- and
Family-Centered Care
7900 Wisconsin Ave, Suite 405
Bethesda, Maryland 20814
P: 301 652-0281
F: 301 652-0186
E: institute@ipfcc.org
W:  www.ipfcc.org
Obama Administration Proposed Rule to Ensure Visitation Rights for All Patients ~ Comment Period Closes August 27, 2010

In response to President Obama’s April 15, 2010 memorandum on Hospital Visitation, the U.S. Department of Health and Human Services published a proposed rule, 75 Fed. Reg. 36610 (June 28, 2010), intended to "ensure the visitation rights of all patients." All hospitals receiving Medicare and Medicaid funding would be required to have written policies and procedures regarding the visitation rights of patients, and set forth any “clinically necessary or reasonable restriction or limitation that the hospital…may need to place on such rights…”

The regulatory language specifically requires that hospitals:

  • inform patients or their representatives of their visitation rights, as well as restrictions or limitations on such rights;
  • not “restrict, limit or otherwise deny visitation privileges on the basis of race, color, national origin, religion, sex, sexual orientation, gender identity, or disability;” and
  • ensure that all visitors designated by the patient “enjoy visitation privileges that are no more restrictive than those that immediate family members would enjoy.”

The regulation goes a long way to ensure the nondiscriminatory application of hospital “visitation rights.” However, the regulation may inadvertently strengthen a hospital’s ability (in a nondiscriminatory manner) to limit patient access to family members and designated loved ones. Restrictions on family presence are counterproductive to safe, effective, compassionate, and quality health care. The Institute advocates welcoming family presence and unrestricted patient and family engagement, rather than restricting and limiting a patient’s right to have “visitors.”

The Department of Health and Human Services (DHHS) invites the public to submit comments on this proposed regulation. Comments must be received at DHHS by 5:00 pm on August 27, 2010, and may be submitted electronically or by mail, courier, or by hand. 

Check out the regulatory language and let your voices be heard.

The Campaign for Better Care's Forum ~ Building Better Care: Improving the System for Delivering Health Care to Older Adults and Their Families

Institute staff attended the invitation only forum: Building Better Care: Improving the System for Delivering Health Care to Older Adults and Their Families on July 28, 2010 at the National Press Club in Washington, D.C., hosted by the Campaign for Better Care. The Campaign works to “ensure that our health care system provides … comprehensive, coordinated, patient- and family-centered” care.

U.S. Senator Sheldon Whitehouse (D-RI), Peter Lee, U.S. Department of Health & Human Services Director of Delivery System Reform, author Gail Sheehy, and journalist Jonathan Rauch joined patients, family members, caregivers, health care providers, and experts from around the country. The forum focused on what is needed to improve the health care system as the new health care reform law is implemented.

One of two panels included patients and family members sharing personal stories. Gail Sheehy, panel moderator, told of her experience of care during her husband's diagnosis and treatment for cancer. The other panel featured health care providers sharing views on their own experiences in the current system, and articulating ideas for what is needed most in implementing health care reform.

A sampling of specific recommendations or goals mentioned during the forum included the need to: provide better care; lower costs while improving quality and safety; promote health, wellness, and preventative care; change the system so that it works for providers, patients, and families; provide better coordination of care; provide financial incentives for primary care physicians and geriatricians; improve professional training; change the payment structure to reward outcomes; and encourage the meaningful use of health care information technology.

Learn more about the Campaign for Better Care, view highlights of the webcast of the forum, and check out the article about the forum in Forbes magazine.

An Open Letter to ICU Nurses About Partnership and Collaboration with Families

Editor's Note: Terry Griffin is a Neonatal Nurse Practitioner at two hospitals in Illinois, and is a member of the faculty at the Graduate College of Nursing, University of Illinois in Chicago.

Dear ICU Nurses,

You are skilled, experienced and caring individuals. You assume responsibility for the most acutely ill and high risk patients in a hospital. During my husband’s recent hospitalization..., I witnessed the excellent care and expertise you gave to a 60 year old man who unexpectedly found himself in the cardiac cath lab having a stent placed... Our unexpected foray into the cath lab was terrifying. I sat alone... waiting, vacillating between calm and the desire to scream. I struggled to avoid that “dark place” where I would have to summon our children from across the country if my husband had complications or did not survive. Thank you for your kindness and the excellent care you gave him.

Although you placed us at ease with the care you gave him, I felt abandoned by you. When we arrived in his room, I was not acknowledged. No one offered me a chair, asked my name or inquired how I was doing. When the director of the cardiac cath lab brought a patient to the adjacent room and saw me still standing in my husband’s room, she asked if I needed a chair. 

When you came to the room (a total of 4 nurses) and introduced yourself to my husband, no one introduced themselves to me. Again, no one asked my name or how I was doing. When my 18 year old son came to see his dad, his first experience with a loved one’s hospitalization, the nurse never acknowledged our presence. I did not want my son to have a negative view of nurses, so I took the initiative and introduced us to the nurse. 

When you pulled his femoral line and worked hard to stop the bleeding, first one nurse being coached by another, then help from another nurse and ultimately you summoned someone from the cath lab for assistance. I knew this was potentially serious, because the same skilled ICU nurses I described above rarely ask for help from an “outsider.” You are independent and competent. When the hospital’s most skilled nurses called for additional assistance, I was worried and tried to stay calm. You talked to one another about a party while applying pressure to stop the bleeding. I needed words of comfort, support. You gave none. 

When he was discharged, I was not included in the teaching. I was not asked if I had any questions about his care or follow-up. Yet, I am the woman who lives with him and would be the first responder in case of a problem. When my husband was admitted to the unit, he was given the “Speak Up” brochure which encourages patients and their families to partner with staff to insure that care is safe. How can I help if I am invisible and inconsequential to you?  I can assure you that I am NOT invisible and inconsequential to my husband’s physical and emotional recovery. 

I hope that you will consider sharing the excellent care you give your patients with their family and friends. Nurses are the most caring people I know. But, caring is more than a feeling; it is a way of behaving. Can you remember the family, too? We need a kind word, a smile, eye contact, and acknowledgment that we too are scared. Please remember us, we are on your team. We want to help. We need you, too. We all have the same goals—the recovery and well-being of the patient. 


Terry Griffin, APN

 Thanks to Our Summer Intern

The Institute team is already missing Carolina Millan Ronchetti.

Carolina, a recent high school graduate, joined the Institute team for the summer before starting her freshman year at McGill University this August. Carolina is interested in studying international development, foreign relations, and journalism. She was a staff writer on her high school newspaper, and an active member of the speech/debate team, winning the duo interpretation of literature at the Maryland state championship.

Carolina’s responsibilities at the Institute included answering the phone, assisting with special projects and marketing, filling publication orders, updating databases, organizing files, and a variety of other substantive and administrative tasks, including graphic design.

Carolina lives with her parents and siblings in Maryland. She was born in Spain, and has lived in Argentina, Chile, and Peru, before moving to the States. In addition to speaking English and Spanish, she also speaks French, which may come in handy while studying in Montreal, Canada. 

North Carolina Seminar Participants ~ Sign Up For Special Events!

Registrants participating in the November 2010 Hospital and Communities Moving Forward with Patient- and Family-Centered Care training seminar will have the opportunity to participate in several optional special events and activities.

Since this Seminar is very intense, participants may want to build in a few breaks to relax and refresh. Unique to this venue, the Institute is pleased to offer:

•    Carolina Low Country Boil, Monday, November 1 at 6 pm

•    Historic Walking Tour and High Tea, Tuesday, November 2 at 3 pm

•    The Spa at Pinehurst

•    Golf at Pinehurst

•    Guest Badges offer participants' guests four full breakfasts in the Carolina Dining Room and the Celebratory Dinner on Wednesday evening, with an option to purchase a ticket for the Carolina Low Country Boil.

Preregistration for the Low Country Boil and Walking Tour/Tea is recommended. Optional events and activities listed above have additional costs not included in the seminar registration fee. Check the registration site for details.

Register for the Seminar by August 20th for Early Bird Rates!

Institute Collecting Information on Hospital Visiting Policies and Family Presence

This is a reminder that the Institute is collecting information on hospital “visiting” policies. Please send the Institute your best practices for welcoming families by August 25, 2010.

Documents may be e-mailed to institute@ipfcc.org or sent by mail to the Institute for Patient- and Family-Centered Care, 7900 Wisconsin Avenue, Suite 405, Bethesda, MD 20814.

Update on Nomination of Donald Berwick to Head CMS 

On July 7, 2010, President Obama made a recess appointment to name Don Berwick, MD, to serve as Administrator of the Centers for Medicare and Medicaid Services (CMS).

Read Don Berwick's Yale Medical School commencement address delivered to the 2010 graduating class.

Thanks to Our Summer Volunteer!

Stephanie Parver, a political science major, is a junior at Colgate University, and graciously volunteered her time to update and improve the Institute’s website, and to work on a special project concerning hospital “visiting policies.” She compiled a list of exemplary hospital visiting policies that welcome family members’ presence when their loved one is hospitalized. Her work will be included with the Institute’s response to President Obama’s memo to the Secretary of the Department of Health and Human Services regarding hospital visiting policies.

Steffy, who started riding at age 6, is a member of Colgate’s Equestrian Team. She was a member of the Student Philanthropy Council, which was responsible for reviewing grants and disbursing $10,000 to not-for-profit agencies in central New York. She also tutored children in an elementary school in upstate New York.
Over the summer, Steffy lived at home in Bethesda, MD with her parents. She also worked as a personnel assistant and provided freelance administrative support for the Thyroid Cancer Survivors' Association (THyCa). Steffy plans to spend part of her junior year at the University of Edinburgh, Scotland, studying international politics.

Reminder: The Institute has a New Name!

Please remember to bookmark the Institute’s new website address, and change your address books to reflect the Institute’s new e-mail addresses.

Institute for Patient- and Family-Centered Care

Institute staff members also have new e-mail addresses. Use the first letter of the staff member’s first name, followed by their entire last name, followed by @ipfcc.org.