Mark A. Clapp, MD, MPH
Learning Objectives: At the end of this activity, you will be able to:
- Identify two instances when communication broke down in the continuum of care.
- Discuss how Jill’s experience relates to the core concepts of patient- and family-centered care as defined by The Institute for Patient- and Family-Centered Care.
- List two instances when providers failed to engage Jill in patient- and family-centered care.
Description: Since the 1980s, multiple definitions of “patient-centered care” and “patient- and family-centered care” have evolved. In partnership with patients, families, health care leaders, and researchers, the Institute for Patient- and Family-Centered Care (IPFCC), a leading organization in the field, defined patient- and family-centered care with the following core concepts :
- Dignity and Respect: Health care practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs, and cultural backgrounds are incorporated into the planning and delivery of care.
- Information Sharing: Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete, and accurate information in order to effectively participate in care and decision-making.
- Participation: Patients and families are encouraged and supported in participating in care and decision-making at the level they choose.
- Collaboration: Patients, families, health care practitioners, and health care leaders collaborate in policy and program development, implementation, and evaluation; in facility design; and in professional education, as well as in the delivery of care.
With these basic definitions of patient-centered care in mind, read the following narrative based on the true story of Jill, a woman whose recent interactions with the health care system illustrate the need for such models of care. As you read Jill’s story, take note of the following:
- The extent to which Jill is informed about her condition and involved in her care
- The providers that she interacts with over time and her relationships with them
- The communication and information that is shared between providers and with the patient
- The instances when Jill was treated with dignity and respect, or a lack thereof
Fall 2000. In the fall of 2000, Jill was in high school outside of Boston when she suddenly dropped to the ground, lost consciousness, and had uncontrollable, violent shaking of her entire body. She was taken to the hospital and evaluated for the cause of her first seizure. Grand mal seizures, like the one Jill experienced, can have many etiologies, including CNS infections (such as meningitis), strokes, and intracranial bleeds. However, Jill had been completely asymptomatic prior to her seizure. Her work-up at the hospital was negative and she was diagnosed with epilepsy after multiple subsequent seizures. Jill continued to have seizures until January 2001 when she was stabilized on two anticonvulsant medications.
January 2002. Jill remained seizure-free for the following year. In January 2002, Jill contracted the flu. With a high fever and uncontrollable nausea and vomiting, she was unable to take her anticonvulsant medications. After missing only one day of medication, Jill once again had multiple grand mal seizures. The repetitive electrical surges to her brain caused severe short term memory loss and forced Jill to miss a month of classes during her senior year of high school. She was re-stabilized on her medications and remained seizure free for the next five years.
Summer 2007. Jill graduated from college in 2007 and, with an interest in global health, started working for the Clinton Health Access Initiative in Africa. She had just settled into her new home in Tanzania when, unexpectedly, she experienced two grand mal seizures. These seizures occurred despite the fact that she was still taking her daily anticonvulsant medications. Jill realized her medications were no longer working. She flew back to Boston for evaluation. It took another six months for Jill to eventually be stabilized on her new anticonvulsant medication before she was seizure-free again in the spring of 2008.
Winter 2010. After returning from Tanzania, Jill was married in 2010. She subsequently moved from Boston to a small town near the coast of North Carolina to be with her husband who was in the military. She quickly established a relationship with a primary care provider, Dr. Jones, given her complex seizure history. Dr. Jones referred Jill to a local neurologist, Dr. Smith, to manage issues related to her seizure disorder and her anticonvulsant medications.
At her first appointment, Dr. Smith declined Jill’s medical records from her Boston neurologist, saying they would not be important to her care or affect his management. He agreed to provide her refills of her current medications, as needed.
Wednesday, June 29, 2011. Jill called Dr. Smith’s office to ask for her first prescription renewal. This process was routine for Jill because she called to request refills about twice a year. It had been six months since her last visit and Jill had not experienced any problems. She was leaving in just a few days to visit her family in Boston for the Fourth of July. When she called, no one answered and Jill left a message asking for the refill. No one called her back. After 24 hours, Jill called again on Thursday and spoke to the receptionist who said the doctor would refill the medication on Friday, July 1st. By then, she would already be in Boston so Jill asked if Dr. Smith could fax the prescription to her old pharmacy in Boston. She gave the office the phone and fax numbers for the pharmacy.
Friday, July 1, 2011. Jill arrived in Boston to find that her prescription had not been called in. She asked the pharmacy for its advice on how to get her medication, and was instructed to call Dr. Smith’s office in North Carolina and listen for the on-call doctor’s phone number. The holiday weekend had already begun by this point. Jill called Dr. Smith’s answering machine only to discover there was no doctor on-call. She then called her PCP, Dr. Jones, in North Carolina and got the on-call number. She paged him twice, but didn’t get a response. Jill returned to the pharmacy in Boston, explained her situation, and was given a three-day emergency supply of the medicine.
Tuesday, July 5, 2011. When she returned to North Carolina on Tuesday (the final day of her medicine supply), Jill called Dr. Smith’s office in the morning and again talked to the front-desk receptionist about her situation. She was transferred to the doctor’s secretary, whose voicemail said she was out of the office. She called the receptionist again and was then transferred directly to Dr. Smith’s voicemail. At the end of the day, Jill received a call from the receptionist saying she had to come for an appointment if she wanted her prescription refilled. The next available appointment was in four days.
Wednesday, July 6, 2011. On Wednesday morning (July 6, one week after her initial refill request), Jill was out of medicine. She and her husband went to Dr. Smith’s office to try and get a prescription in person. Jill explained the situation to the front desk. The receptionist said that the practice always asks patients to come in for a follow-up appointment when a prescription runs out. Jill had never been asked to do this at other offices and thought this was strange, especially since the receptionist had originally agreed to refill her medication on the phone less than a week before. The receptionist told her that it was the patient’s responsibility to know these things and to make her own appointment. Jill pleaded for an appointment that day, but was only told that “she could possibly be squeezed in” in three days.
Jill and her husband left the office upset that the situation could not be resolved that day.
With no prescription and few options, Jill tried to call her old neurologist in Boston only to find that he had moved to Pittsburgh. However, the receptionist in the Boston office paged the head of the neurology department at a local Boston hospital and said that if Jill didn't have any medicine soon, a doctor in Boston would fill the prescription for her.
Jill drove to the nearby military hospital to see if anyone there could help. The hospital, however, explained it could only treat enlisted patients with military insurance.
Out of other options, Jill and her husband went to Dr. Jones’ office for an emergency appointment. Dr. Jones documented everything that happened and was mortified since her office had referred Jill to this neurologist. Dr. Jones said she was not supposed to prescribe these seizure medications, since her neurologic care was managed by Dr. Smith. However, she reluctantly gave Jill a two-month supply. The crisis was seemingly averted.
July 7, 2011. The next day, Jill returned to the pharmacy to pick up her prescription only to find that the insurance company had rejected the refill. They claimed that the medication had already been refilled — Dr. Smith had called in the refill to the Boston pharmacy the previous night. The pharmacist quickly resolved the issue with the insurance company and Jill finally got her prescription.
Luckily, she did not have a seizure during this episode. Jill transferred her care back to Boston. Although she and her husband still live in North Carolina, Jill flies up to Boston every six months for her follow-up appointments.
- After reading the story, consider the following questions for discussion:
- Identify the lapses in care that occurred throughout the case and led to Jill’s medication crisis. Which of these lapses occurred as a result of an individual-level (provider) failure? Which were system-level failures?
- How could Jill’s experience with the health care system be redesigned to illustrate the principles of patient- and family-centered care? Draw a diagram to illustrate this redesigned system.
- Examine each of the individual providers in the story: Dr. Smith, Dr. Jones, the pharmacist in Boston, and her Boston neurologist. How could they have better provided patient- and family-centered care?
- Referencing the IPFCC’s definition of patient-centered care, describe how Jill’s experience relates to the core concepts of 1) dignity and respect, 2) information sharing, 3) participation, and 4) collaboration.
- What barriers does the current health care system face to re-designing care around the patient as opposed to the provider?
- Describe how patient- and family-centered care can improve patient safety and the quality of care delivered using examples from this case.
- Put yourself in Jill’s shoes. What red flags would have concerned you? How would you handle this situation differently as the patient?
- How can you ensure that patients are involved in their care? List three actions you should perform with each patient.