Annals of Family Medicine Research

Patients, Family Caregivers Talk Tough on Care Transition

June 28, 2018 02:48 pm Sheri Porter

An article in the May/June issue of Annals of Family Medicine covers a topic that has caused much angst for family physicians and their patients over the years: care transition management.

[elderly man leaning on walker]

From the title of the article,(www.annfammed.org) "Care Transitions From Patient and Caregiver Perspectives," it's obvious that researchers wanted to hear from the two groups of people who are most personally impacted by this thorny health care issue.

Between March 1, 2015, and March 1, 2016, researchers interviewed 138 patients and 110 family caregivers who were recruited from six health care networks nationwide. A care transition was defined as an acute hospitalization followed by "discharge to post-acute care at home or to a nursing facility for stabilization and/or recovery."

At the behest of the principle funder, the Patient-Centered Outcomes Research Institute,(www.pcori.org) the research focused on people who were members of an underserved population, such as those living in a rural community, suffering a mental disability, having low socioeconomic status or identifying as a non-English speaker.

Story Highlights
  • An article in the May/June issue of Annals of Family Medicine examines patient and family caregiver attitudes about their experiences with care transition management following an acute hospitalization.
  • Corresponding author Suzanne Mitchell, M.D., said that despite large investments to address the problem, little progress has been made.
  • The system is putting an incredible strain on the patient/caregiver relationship, and caregivers are experiencing extreme distress.  

Lead author Suzanne Mitchell, M.D., an assistant professor of family medicine at Boston University School of Medicine/Boston Medical Center, talked to AAFP News about the project.

She said patients and caregivers were interviewed separately, giving researchers the opportunity to "examine the aspects of patients' care transition experiences that were relevant -- including what services and processes of care most met their needs."

Mitchell said the research team found surprisingly little difference in the needs expressed by the different subpopulations. And her description of the primary findings indicated a shocking lack of progress in health care systems nationwide from the viewpoint of patients and family caregivers.

"The real punchline is that despite millions, if not billons, of dollars of investment to improve care transitions in hospital discharges, from the patient and caregivers' perspective, everything still looks the same," said Mitchell.

"We really have missed an important part of the perspective of delivering care, which is how well it meets the target population needs."

She added, "Readmissions are still a problem, and one of the biggest drivers of both cost of care and adverse events. We have not made a huge amount of progress in our end game."

Research Highlights

Participants were asked a series of questions, including about how others prepared them to return home after a hospital admission and what the first few days at home were like.

Interviewers also asked what was most helpful at home, what was difficult and what could have made the transition easier.

According to the authors, patient and caregiver participants identified three specific outcomes as necessary for safe and manageable care transitions. Those were

  • feeling cared for and cared about during the care transition;
  • relying on unambiguous accountability from the health care system, including an understanding of which physician was responsible for overseeing the care; and
  • feeling prepared to execute the care plan upon discharge.

Based on information gathered during the interview processes, researchers were also able to develop five themes related to the process of care. Those were listed as

  • using empathic language and gestures when communicating with patients and families,
  • anticipating patient and caregiver needs to succeed in self-care at home,
  • engaging in discharge planning in collaboration with others,
  • giving actionable information, and
  • providing continuous care until the patient's recovery.

Although the study is peppered with participants' quotes, Mitchell lamented the fact that the authors had to "cut so much of the really meaningful storytelling."

"We have 2,000 pages of testimony from patients and caregivers, and the stories are powerful," said Mitchell. "Some of the experiences are good, but a lot of them are not."

For instance, one participant described a feeling of abandonment when a problem arose at home and there was no one to call for help. "It's like being thrown out in the middle of a lake and (being) expected to swim to shore, and (you're) frantically searching for somebody on the other side of the lake to help you," noted the family caregiver.

Another said, "Somebody should've advised me what the aftercare was was gonna be. If you're gonna hold me accountable to be the nurse, then you need to train me to be the nurse."

A third participant likened the care transition process to "being in the wilderness," and added that patients and caregivers "don't know what they don't know."

More From the Author

Mitchell took some time to answer more questions about the study, and her responses are captured in this short Q&A.

Q. What drives your personal interest in this topic?

A. As a palliative care physician and a classically trained family doctor, care transitions are part of my clinical practice all the time. I've worked in the hospital setting, clinics, nursing homes, and now in a cancer center in an oncology practice. To this day, I still see how my patients and caregivers are challenged when they are hospitalized or discharged from the hospital. I have a strong interest in why things work for which populations and want to understand how we can better provide people with the care they need so they don't experience adverse events.

Q. Was there a particular finding that struck a chord with you?

A. It's a hazardous journey that hasn't really changed much. The same failure modes are still there. People are still hopscotching between providers -- in charge of themselves -- for a vulnerable period of time.

Q. Why is this a particularly important discussion for family physicians to have?

A. For a long time, care transition research was focused on hospital settings, but we know that most of what goes awry for people is after they leave the hospital and has a lot to do with the availability of resources and the engagement of those resources with the patient at the right time.

Family physicians, and all primary care providers, need to be willing and able to reach in to the care transition process rather than waiting to be invited in.

Q. How would you fix the care continuity loss that occurs when a patient enters to the hospital?

A. We need to listen to how people describe the continuity, not how systems define continuity. Patients want their personal doctor, who already knows them, to see them in the hospital.

If we had family doctors going in and doing a discharge visit with their patients -- and that was required before patients could leave the hospital -- that accountability question would no longer exist. Patients would be connected to their continuity providers right away in real time.

Q. What's the most important takeaway for our readers?

A. The system is putting an incredible strain on the patient/caregiver relationship, and as a result, caregivers are experiencing extreme distress. We heard that loud and clear. Caregivers have a different role, and as a system, we don't meet their needs, we don't accommodate their constraints and we don't listen to them when we should.

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