Wednesday, May 9, 2018

Finding Understanding and Love After Loss

“If an unexamined life isn’t worth living, I come to believe an unexamined grief is a bigger loss.”—Lisa Romeo, author of Starting with Goodbye: A Daughter’s Memoir of Love after Loss

How many of us can honestly say we have no regrets about our relationships with family members and/or friends we have lost? Not calling or visiting them more often? Arguments unresolved? Hurts unspoken? Love unacknowledged or unappreciated? How many of us continue relationships with those who have died?

In her thoughtful, funny and tender new memoir, Starting with Goodbye: A Daughter’s Memoir of Love after Loss, Lisa Romeo describes how talking with her deceased father helped transform her grief into a relationship that felt closer than when he was alive.

Romeo’s wealthy, self-made father, Anthony Chipolone—“Tony Chip” to his friends and colleagues in the textile industry—begins visiting her shortly after he dies at age 79, four days short of his 80th birthday. When he appears in dreams and at times of quiet reflection, Romeo uses their meetings to revisit her privileged childhood in New Jersey “filled with horses, lavish vacations, and bulging closets” and explores with fierce honesty how their relationship changed over the years. How, despite his generous, affable personality, and pride in her, he remained distant and unknowable. How the adoration she felt for him as a child turned to disregard as an adolescent and impatience as an adult.

Romeo recalls how she and her father “butted their stubborn heads” but in the months after his death, she cannot remember one important issue they once saw differently. During the course of their conversations, she realizes how alike they were and that the ambition and entrepreneurial spirit they shared might have driven them closer in life, had she slowed down to notice sooner.

The memoir moves fluidly from past to present as Romeo negotiates her life as a wife, mother, daughter to her mother, sibling, and writer. While she admits that she deals with confrontation better in prose with time to reflect than on her feet in real time, she is unequivocal in communicating the need for honest discussions with those who are important to us in life and in death.

In Starting with Goodbye, Romeo shows us that it is never too late to find understanding and love—whether you are grieving the loss of a loved one or looking for closer relationships in the here and now.

Lisa Romeo teaches in a graduate MFA program and works as a manuscript editor and consultant. Her work has been published in literary journals and popular media, including The New York Times, O The Oprah Magazine, and Brevity.

Monday, June 5, 2017

Internet-Delivered Health Interventions That Work

Feeling stressed? Depressed? Want to stop smoking? Need help with substance abuse?  Diet and Exercise? Insomnia? Diabetes? Chronic Pain?

These are just a few of the many health-related topics addressed through online interventions. Anonymity, convenience, and low cost have increased the popularity of these programs in recent years. But how do you know they actually work?

That is the central question addressed in an original paper by Mary AM Rogers, MS, PhD, and colleagues at the University of Michigan. The results of their study are published in a recent issue of the Journal of Medical Internet Research. (Please see full citation below.)

Through comprehensive search, review and analysis of studies that tested the effectiveness of programs in randomized clinical trials (the gold standard in medical research), the Dr. Rogers and colleagues found a wide range of programs for health-related behaviors and disease prevention and support. However, the majority of programs were only available to clinical trial participants.

The article does include a list of evidence-based programs that are available for general use, many of which are free. The list is organized by category, intended audience, name of program, live links to websites, cost and language. Click on this link to the article and scroll down to Table 3. 

Dr. Rogers and colleagues discuss the characteristics of successful programs, the need for more work related to participants' readiness and factors that enable use. They also caution that an overall benefit of a program demonstrated in clinical trials is based on a group effect and the program will not necessarily benefit every single person. They note that programs "do not guarantee a specific result; they only promise a greater likelihood of a benefit if the therapy is completed."

In their conclusions, the authors underscore the need for organizations to host sites for evidence-based programs and to inform the public of their availability and where to find them online.

Their paper is an excellent start.

Rogers MA, Lemmen K, Kramer R, Mann J, Chopra V
Internet-Delivered Health Interventions That Work: Systematic Review of Meta-Analyses and Evaluation of Website Availability
J Med Internet Res 2017;19(3):e90
PMID: 28341617
PMCID: 5384996

"What Matters to You?" Day - June 6, 2017

"What Matters to You?" is an international initiative to encourage healthcare professionals and patients to have conversations about what is most important to the patient regarding their health and then to act on it. The following brief video describes the benefits to healthcare professionals.

Click here for a previous post on the patient's role in shared decision making and the importance of telling your physician what matters to you. And click here, if you have trouble talking with your doctor.

Tuesday, June 7, 2016

Exceptional Lives: Free Personalized Guides to Help Children With Disabilities Thrive

"As a parent of a child with a disability, finding the right services for my son has always been a challenge. Most of the time I have to be much more than a mom – I have to be researcher, expert, and navigator too. It’s hard to know where to start when trying to get help....Exceptional Lives’ free online Guides are a great place to start." —Kim Corwin, How Exceptional Lives Listened to Parents and Took Action. Read full blog post here.

The Exceptional Lives website was founded by parents of children with disabilities who are also experts in the field. Their goal is to help families find services and support for their exceptional children, or adult family member, while reducing the stress and frustration that is so often part of the process.

Exceptional Lives uses a series of guides to ask parents simple questions about their family situation and then uses their answers to provide information and suggestions that are relevant to the needs of their family member.

Free online Guides include:

  • How to Create an Effective IEP (Individualized Education Program)
  • How to Apply for SSI (Supplemental Security Income)
  • How to Navigate Guardianship
  • How to Access Special Ed
  • How to Optimize Your Health Insurance
Guides are developed and reviewed with experts, based on the latest research and best practices, and written in plain, easy-to-understand language.

Friday, May 6, 2016

Asking Doctors to Clean Their Hands Made Easier

According to the Centers for Disease Control (CDC), "An estimated 722,000 healthcare-associated infections occur each year in U.S. hospitals, and about 75,000 patients with these infections die during their hospital stays."
Clean Hands Count
Despite knowing the risks to their patients and themselves, physicians wash their hands less than half the time they should and even the most empowered patients can feel awkward about asking them to do so. The CDC is trying to change physician and patient behavior with a new campaign to promote hand hygiene in healthcare settings.

"Clean Hands Count" aims to:
  • Improve healthcare provider adherence to CDC hand hygiene recommendations
  • Address the myths and misconceptions about hand hygiene, e.g., many believe that alcohol-based sanitizers promote antibiotic resistance when they do not
  • Empower patients to play a role in their care by asking or reminding healthcare providers to clean their hands. Suggestions include:
    • "I didn't see you clean your hands before you came in, would you mind cleaning them again before you examine me."
    • "I'm worried about germs spreading in the hospital. Will you please clean your hands once more before you start my treatment."
Information and materials for providers, patients and their loved ones, healthcare organizations, and the media are available at:

Saturday, August 8, 2015

What Is Your Health Confidence Rating?

Patients who are confident in their ability to manage their health problems take an active role in decision-making, have better health outcomes and healthcare experiences.

This type of "patient engagement has been rightfully likened to a blockbuster drug for successful management of chronic conditions and the reduction of health risks," say Drs. John Wasson and Eric J. Coleman in their recent article published in Family Practice Management.

If your rating in the above chart is low, you are not alone. Many of us lack the confidence we need to manage our health. Changing unhealthy behaviors—like not exercising, overeating, smoking, drinking too much and abusing drugs—can often seem especially difficult.

Dr. Wasson, who is an emeritus professor of community and family medicine at Dartmouth Medical School, and colleagues have developed a website that helps break seemingly big problems into small doable actions. Based on 20 years of testing and refinement, the confidential, free and easy-to-use site offers assessments, personalized health plans, information and tools to help you find practical solutions to the problems that matter most to you.

Take a look and find out how small successes can build confidence and lead to better health.

The site is designed to support not replace your relationship with your physician. Depending on the nature of your health issues, you may want to use this resource in preparation for creating a personalized plan with your healthcare provider.

Wednesday, October 1, 2014

New App Offers Roadmap for Dealing With a Devastating Diagnosis

AfterShock provides concise information and resources to help newly diagnosed patients and their loved ones navigate the fear and confusion that often follow a serious diagnosis.

Jessie Gruman
The app is based on the book AfterShock by Jessie GrumanFounder and President of the Center for Advancing Health—who was a tenacious advocate for patient engagement and empowerment. Her wisdom and passion informed by her own battle against five cancer diagnoses over a 40-year period. 

The recommendations in AfterShock are based in part on her experiences and on more than 200 interviews with patients, family members, nurses, doctors, and hospital administrators. Woven throughout the content are stories of people who like Ms. Gruman faced the challenges of their diagnoses and learned how to cope and take care of themselves. 

The app is a condensed version of the book. Sections include:
  • Getting Through the Shock
  • Learning About Your Diagnosis
  • Learning About Treatment Options
  • Telling Others
  • Finding Good Doctors and Hospitals
  • Getting a Second Opinion
  • Making Your Appointments
  • Finding a Little Relief

Ms. Gruman, who passed away in July, was remembered by many colleagues and friends as a "pioneer," "champion," and "hero" in helping people understand their role and responsibility in participating in their care. She leaves a rich legacy.

AfterShock is available for free downloading in Apple's App Store. It is currently compatible with iPhone, iPad and iPod Touch. The app is optimized for iPhone 5.