Patient and Family Centered Care and Lean in Healthcare Transformation
Lately, I have been thinking a lot about the power of combining patient centeredness and Lean in healthcare transformation. These ideas became more focused after a recent call that worried me from the moment I saw the identification of the caller on my screen. Emails and texts are the usual forms of communication for this person whom I have known for many years. My apprehension was confirmed when the voice on the other end of the line said, “It’s terrible! Matt is in the hospital and he has had a stroke!” Several months ago she had emailed me asking for advice because Matt had been discovered to have cancer after more than a year’s worth of complaints about an intermittent difficulty.
I was relieved when I learned that Matt was to receive his care from the cancer services of an internationally famous hospital that was not too far from his home. My role as a friend and trusted adviser with a little bit of “inside” knowledge would become easier. I did not know the people from whom he was getting care, but I did know that if you made a list of the ten most respected academic medical centers in the world, Matt was going to be getting his care at one that would be on everybody’s list.
He was not surgically curable and began a course of chemotherapy and radiation that would be time consuming, uncomfortable and logistically difficult for anyone, but even more so for a semi retired couple in their seventies with only friends and no local family for support. Traveling through heavy urban traffic to a downtown world class oncology program seems reasonable, especially if it is to get care that is deemed to be the best on the planet. The life of a patient can hard when one must fight the commute to get to the place where you go almost daily, like a job, to get the treatment that you hope might extend your life.
After several months of treatment Matt and my friend were encouraged because they were told that the scans “looked better.” The tumor was shrinking though Matt felt weak and uncomfortable most of the time. He had lost over forty pounds in the course of his treatment. There were only a few treatments left and his “counts” seemed to be holding. The biggest events and changes arrive as sudden and unexpected surprises. So it was with Matt. My friend was awakened in the night by the sudden realization that something was wrong. Matt seemed confused. He was trying to get out of bed but seemed weak on one side. His speech made no sense. My friend is not a medical professional but is an educated professional woman who knows the warning signs of stroke.
Perhaps if Matt had not been a complicated oncology patient, she would have just called 911. The oncologist had urged them to call with any concern day or night, and so that was the call she made. She was relieved when after two calls and a thirty minute effort she was on the phone with the oncologist that she knew who listened to her story. She was surprised when the oncologist said, “He can not be having a stroke.” Perhaps he is just having some “intermittent delirium.” Apparently, this is a frequent problem in this oncologist’s experience. If he was still “confused” in the morning she could call for a visit. When the phone call ended, my friend was not relieved but confused and now faced the reality that she must either accept the oncologist’s advice or go elsewhere. Matt’s “confusion” seemed to come and go. The next few early morning hours were frightening and confusing but her sense was that he was getting worse. She then called 911.
At the local hospital the staff in the emergency room quickly determined that he was in the midst of a major neurological event. Protocols were activated. He needed to go “in town” to the academic medical center to see if a clot could be extracted from his middle cerebral artery. When the procedure was attempted more than ten hours after the onset of his symptoms, the outcome was suboptimal. The stroke team expressed regrets that they had not been called sooner.
One would hope that the downward course had reached its nadir. Matt was now in the ICU at an the same outstanding hospital where he received his oncology care, and where theoretically ineptitude had been supplanted by world-class technology and decades of clinical experience. What happened to Matt and my friend suggests that communications expertise with patients and families has not to been concerns worthy of attention in this institution famous in part for being famous. Immediately there were concerns about aspiration that led to mixed messages from nurses, house staff and attendings. Difficulties with feeding tubes and debates about the merits and advisability of a PEG versus surgical placement of a gastrostomy tube were confounded by parallel debates over anticoagulation for recurrent atrial fibrillation, low platelet counts, operative risks and rehabilitation status.
Every question answered by one authority was refuted by another from a different service or by a house officer or nurse who offered contrary advice or began to make a new plan. My friend was actually the person who suggested the direct surgical placement of the gastrostomy tube since the “team” was concerned that his condition contraindicated the PEG and without some access for nutrition he would not be a candidate for rehab.
As the week moved on medications were forgotten. Antibiotics were started and stopped as questionable x rays led to debates of infection versus atelectasis. Debates included whether or not he should finish has radiation. All the while my friend felt that Matt was suffering unnecessary pain and getting worse. She worried because she had been told that if he was too weak for rehab he would be discharged to a facility where he would get only twenty days or care. He was too weak to do three hours of rehab a day to be eligible for Medicare to pay for a effective rehab.
Matt finally had the surgical placement of his gastrostomy tube. His radiation was completed on the day he was transferred to the higher level rehab where there is hope for some recovery. My friend sent me an email saying:
It is a much saner place and absolutely beautiful. So far people are very cooperative, personable, and actually have some time to talk.
This is a cautionary tale. We are all subject to the same painful events and humiliations no matter how successful we have been, the fame of the institutions where we jockey to get our care, the level of our education, the people that we know or the size of our resources. Matt and my friend had every reason to expect that he would get great care. They followed the rules they were given; yet they had an unfortunate outcome made even more difficult to endure because of systems issues and a lack of coordinated communications.
The cost of care was never an issue, but there were enormous amounts of avoidable waste and suffering in their experience. The waste in Matt’s care will be measured in the hundreds of thousands of dollars over what it might have been had he received timely stroke management. Perhaps things might have been worse had my friend not given Matt an aspirin even before she called the doctor when she first suspected that he might be having a stroke.
Dr. Anthony DiGioia an orthopedic surgeon at the University of Pittsburgh and heads up their innovative program of Patient and Family Centered Care. Dr. DiGioia and his colleagues have published many scholarly articles demonstrating the economic benefits to patients and institutions associated with care that is co designed with patients and families. The system and methodology are described in a recently published PDF.
In the AMA Journal of Ethics Dr. DiGioia and his colleagues have written:
We suggest that clinicians and healthcare organizations can apply Pine and Gilmore’s prescription of creating an exceptional experience of care by partnering with patients and families to redesign care and can do so in a way that increases value by simultaneously improving clinical outcomes and decreasing costs. Experience includes everything that leaves an impression on the patient and family, from their viewpoint—for example, clinical outcomes and care quality, interactions with and among care professionals, transitions in care, the physical environment, safety, and costs. Accordingly, medical education must include (1) coursework that introduces these concepts and (2) a specific implementation mechanism with which to achieve and sustain (over time) focus on patients’ experiences and on patient and family-centered care in clinical settings.
That paragraph suggests that it is within the capability of an AMC with world class credentials and resources to practice a more patient centered form of care. It also makes reference to the fact that TDABC (time driven activity based cost) analysis shows that focusing on co creating a better experience of care for patients and families improves profitability and lowers total medical expense. If your mantra is “no margin, no mission” then introducing patient and family centered methodology and practice in your institution should be a high priority!
The lead article in the “Perspectives” section of the August 25, 2016 NEJM was entitled “The Hard Work of Health Care Transformation” by Richard Bohmer. Dr. Bohmer’s first paragraph is a brilliant description of the world as many organizations are experiencing it now.
Governments and regulators influence the performance of health care organizations and practitioners primarily through positive and negative financial incentives, regulatory constraints on their licenses to practice, and support of performance-improvement activities through education, research, and measurement programs. The financial approaches aim to motivate change in the way organizations and practitioners configure their systems and deliver care, under the assumption that once they’re motivated to seek surplus or avoid sanction, they’ll be willing and able to make local operational changes to reduce cost and improve safety, patient experience, and outcomes. Unfortunately, experience shows that although a changed market may be a helpful precondition to local performance improvement, it hardly guarantees effective operational change.
He notes that some organizations are making progress in the hard work of transformation and then asks the rhetorical question, “How are they doing it ?”
- “… lasting transformation requires the relentless hard work of local operational redesign…” Not by “top-management-led structural and governance change”. —Think Lean!
- “…‘transformers’ like Virginia Mason Medical Center…make small changes to their structures and processes over long periods.” –Think Lean!
- “Everything … has been subject to redesign…”—Think Lean!
- “…multidisciplinary teams must undertake this redesign work.”—Think Lean!
- “..few redesigns get it 100% right the first time…transformation is a long series of local experiments.”—Think Lean!
- “Transformation requires sustained change in individual behavior, team interactions, and operational design.”—Think Lean!
Successful organizations create improvement resources that engage clinicians and sometimes patients and families. They use a standardized approach to change (like Lean). Those methodologies change the language and culture of the organization. They are committed to measurement and data utilization. Their senior management groups support and facilitate the work done closer to the point of care. —Think Lean!
Work by Dr. Digioia and his colleagues, work in organizations that have embraced improvement methodologies like Lean, and thoughtful analysts like Dr. Bohmer give me encouragement that care that is as disappointing and dysfunctional as Matt received as a patient and my friend endured as a family member, may become rare in time. There is an ethical obligation for us to improve the experience of the patients and families. It boggles the mind to realize that we continue to allow our collective ineptitude and misconceptions to delay that day when we all can count on receiving
Care better than we’ve seen, health better than we’ve ever known, cost we can afford…for every person, every time.
