Reading Dr. Wolf’s Patient Experience blogs, we learn the importance of involvement in order to achieve excellence, that patients are partners and that we are the patient experience. Whether we’re actually the patient, or part of family or professional care teams, we all make up the patient experience. While instituting change may be arduous, if we see a problem, I believe it’s our responsibility to try to do something about it. We need to get involved and propel that move toward excellence – even if life has thrown lemons at us – or maybe because it has.
In 1999 my husband, John, received a heart transplant at a major teaching hospital. While in intensive care, he was intubated and was put in hand restraints so he couldn’t pull out the tube. Although it was still within his reach, his nurse call button was broken. Although the walls around him were glass, his charts were taped to the window blocking all view of his face. Then something went wrong - and he started choking. He was in distress, frightened and in danger - and he couldn’t get anybody’s attention to help him. Here in one of the finest teaching hospitals in the world, my husband had no way to signal for assistance. It was horrible for him.
I’ll never forget how panicked he was when I came into his room and discovered this inexcusable circumstance. I’ll never forget how appalled and angry I was that this had happened to my Darling John! What a horrific patient experience!
Once out of danger, he was given a piece of paper with the alphabet on it and told to point to letters to spell out what he wanted to say. This ridiculous method was infuriating. Yet, any time you or your loved ones are hospitalized, you face the possibility of encountering similar frustrating, frightening and dangerous circumstances because patient communication methods are often sorely inadequate. This shouldn’t happen to you, nor to those you love and care about.
Rather than citing the hospital for negligence, I did something more constructive and more important. I invented a patient concierge system to help every hospitalized person, you and your loved ones, have a better and safer patient experience.
Of course you want to have your loved ones close when you are ill, and loved ones want to be close to you. Yet visits aren’t always allowed. My secretary had a heart attack and was hospitalized for several months. Because she had a trach tube, written notes were her only form of communication. She was in a long-term relationship, but her gentleman friend was not allowed to visit because he wasn’t a relative – thus creating a greatly diminished patient experience for her. Picture your cell phone and computer in 1999 and you’ll quickly remember how difficult it was to communicate with anyone – even if you could get cell service. So, technology didn’t even provide a serviceable option. As a board certified medical psychotherapist, I know these loving interactions are crucial to a compassionate experience and to creating the most beneficial healing environment.
Instead of focusing just on the needs of the professional care team, which was the norm for hospitals for many years, the focus desperately needed to be shifted to patient-family centered care practices providing direct access links to care staff, support services, food services, and family and visitors. Though it’s taken many years since this 1999 incident, we’ve seen the tide begin to turn making the patient experience and patient satisfaction so fundamental that reimbursements are now linked to them. Patient partnering and involvement are what turned that tide toward an excellent patient experience.
Diana B. Denholm, Ph.D., an internationally recognized caregiving expert, is the inventor of myPAL™ – Patient Access Links and the author of The Caregiving Wife’s Handbook (www.caregivingwife.com) which is endorsed by the AARP, National Council on Aging and Mental Health America. She currently writes for Psychology Today, Stroke Network, PBS and a variety of print publications. She may be reached at firstname.lastname@example.org.