Posted By Kelly Parent,
Wednesday, June 20, 2018
Updated: Tuesday, June 19, 2018
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“Unless someone like you cares a whole awful lot,
Nothing is going to get better. It's not.” - Dr. Seuss
If your health care organization is anything like the ones for which I have worked, you have been exposed to a myriad of philosophies, principles, and tactics (i.e., service excellence, patient/person and family centered care, patient and family engagement, relationship-centered care) that seek to define a culture that achieves optimal patient and family outcomes and experiences through the creation of trusting and empathic relationships, effective communication tactics, and patient and family engagement and activation. There is compelling evidence for the value of such efforts, for they have been shown to improve clinical outcomes, decrease harm events, reduce litigation, and save health care dollars.
However somewhere along the way, the health care industry has become a bit preoccupied by “the test,” viewing the patient experience largely through the lens of patient satisfaction scores. Somewhere along the way, we have allowed ourselves to transpose the patient experience with the customer experience as incongruously defined by hotel standards. We are spending large amounts of time (and money) focusing on a number instead of a person, reacting to mismanaged expectations, and trying to surpass our competition by offering gourmet food, fancy wait space amenities, and concierge services. It is time to get back on track re-centering our attention on clinical excellence. We must re-focus by respecting the needs and perspectives that patients and families bring to the table, communicating with them in ways that are understandable and affirming, welcoming and encouraging their participation in care planning and decision making, and evaluating success in meeting goals of care.
“It's not about what it is, it's about what it can become.” - Dr. Seuss
Fifteen years ago, my family was thrust into the world of doctors, hospitals, fear, and pain when our daughter was diagnosed with a serious illness. Being health literate, we were relatively well positioned to navigate this complex world, for we understood medical jargon, knew how to get answers to our questions, and most importantly, grasped the importance of becoming an active member of her health care team. However despite our confidence, knowledge, and skills, at times we were too vulnerable, too intimidated, and too exhausted to comprehend every conversation, engage in every discussion, and speak up every time that we were unsure. We learned to appreciate the staff who took the time to see where we were (sometimes with needs changing from shift-to-shift) and adapt care tactics accordingly. During highly emotional and difficult times, we needed staff to take care of us and do things “to and for” us. At other times, we needed to be fully present, engaged, and activated to partner “with” our daughter’s providers to make decisions and learn how to manage her care at home, and we always needed staff to know our daughter, the little girl, and not just our daughter, the illness.
My daughter’s illness turned out to be my training ground to become an advocate for patient and family centered philosophy and culture and create institutional readiness for patient and family partnerships. Over these past twelve years, I have learned that patient and family centered care is the way to achieve optimal outcomes and experiences, but to accomplish culture change it takes all of us:
- We must commit to finding our passion to care for those who come to us at their most vulnerable needing us to provide emotional, spiritual, and physical support.
- We must remember that unless you ask, you have no idea what patients and families fear most.
- We must commit to creating and sustaining a culture of teamwork, trust, and compassion welcoming our patients and families as full members of their health care team.
- We must remember that no one knows more about our patients than the patients themselves and their families.
- We must commit to welcoming family presence and participation across the care continuum.
- We must remember to acknowledge family expertise and point out strengths.
- We must commit to providing transparent, understandable, and timely access to medical information and coordinating care and communication across all settings.
- We must remember to explain “why” and teach “how”.
- We must commit to respecting and encouraging patients and families to speak up if something does not feel right.
- We must remember that what is routine for you is far from routine for patients and families.
- We must commit learning what matters most to patients/families.
- We must remember to truly listen.
“Today I shall behave, as if this is the day I will be remembered.” ― Dr. Seuss
Kelly Parent has twelve years’ experience leading patient and family engagement efforts across clinical, education, research, and quality/safety initiatives. Kelly started as a Family Advisor, served as PFCC Program Manager at a large academic medical center, worked as a PFCC educator and consultant, and is currently the Vice President for the Patient and Family Experience at Beaumont Health System.
patient and family engagement
patient centered care
Posted By Barbara Lewis, MBA,
Tuesday, January 14, 2014
Updated: Sunday, January 12, 2014
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I recently had the opportunity to attend the Institute for Healthcare Improvement’s 25th Annual National Forum on Quality Improvement in Health Care held in Orlando. As a family member who altered my career last year after my sister’s death to focus on improving the patient experience, the conference was a dream come true for me. Cited by many as one of the best conferences in healthcare, the IHI Forum was an incredible experience with inspirational and thought provoking keynotes, educational sessions, informative and interactive exhibits, a bookstore packed with knowledge and 6,000 people from around the world – all interested in improving healthcare. I met wonderful people, whom I hope will be my friends for life.
The Beryl Institute generously supported a booth – The Patient Is In. Prominently situated in the Forum lobby, the kiosk offered attendees the opportunity to talk with patients, family members and patient advisors about how they can better work together.
The conference was bookended by two inspiring speakers – Maureen Bisognano, the President of IHI and Don Berwick, the founder of IHI 25 years ago.
Maureen kicked off the Forum with a thought provoking message to "flip healthcare.” Just as other industries are flipping, such as education where lessons are learned at home and "homework” is done in classrooms under the teachers’ watchful eyes, Maureen’s request was for the audience to discover a new model of healthcare.
Her message was complemented by Don Berwick’s remarkable closing keynote. Using the analogy of John Harrison in the 1700s, who researched for 47 years and invented four apparatuses that map longitude and time, healthcare initiatives can be just as revolutionary…and take just as long.
His inspirational message invoked Maureen’s flip it theme by imagining a world where we don’t just focus on health care but rather health creation. He cited four pillars of human flourishing: psychological resilience, social support and cohesion, exercise movement and sleep and health exposure to substances in diet and environment. He went on to discuss the characteristics of Dan Buettner’s Blue Zone communities: move naturally, know your purpose – have a reason for waking up, kick back – shed stress, eat less, eat less meat, drink in moderation, have faith, power of love – family first and stay social. The effects of these activities have proven to have enormous impact on health.
Don reinforced his new health vision when he described a car trip to visit his two-year old grandson, Caleb. Don started the drive upset with tense shoulders and neck, and stomach pains. But as he drove closer to the little boy who would jump in his arms, his pains, his aches and his tensions melted. Don created good health through Caleb. He concluded his powerful presentation by asking the rapt audiences: Who or what is your Caleb?
The recent upheaval in healthcare presents a rare opportunity for transforming an industry that is crying for change in so many areas. And if you think that you can’t do much yourself, remember Lindsay Beck.
In her keynote interview with NBC medical editor Nancy Snyderman, Lindsay told her sometimes funny and poignant story. Through her treatment for a cancerous tongue, she ultimately forced all U.S. doctors to inform patients that chemotherapy could sterilize them and convinced every insurance company to pay for freezing a woman’s eggs or a man’s sperm. As Nancy pointed out, Lindsay changed western medicine.
What can you do? Don had six suggestions:
- Reconsider you own concept of health.
- Reconsider the form and function of your piece of the healthcare system.
- Take account of healing tools you and your patients have that lie outside the boundaries of the healthcare system.
- Bring systems thinking to the pursuit of well-being.
- Re-establish your faith in and use of connectedness and interpersonal relationships.
- Remember, embrace and celebrate that kindness is inseparable from healing and good health.
Let’s get started...we’ve got a lot to do.
Barbara Lewis, MBA is the founder of Joan’s Family Bill of Rights, which focuses on writing, speaking and researching to improve the patient experience. She is a member of The Beryl Institute’s Global Patient and Family Advisory Council and a recipient of a 2013 Beryl Institute grant.
patient centered care
Posted By Diana B. Denholm, Ph.D.,
Monday, December 2, 2013
Updated: Wednesday, November 27, 2013
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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.
patient centered care