Tag Archives: patient- and family-centered care

[AMA JOE From the Editor] “Nothing About Us Without Us”: Toward Patient- and Family-Centered Care

This article, excerpted here, is available in its entirety at the AMA Journal of Ethics

Around dinnertime on the second Tuesday of every month, a group of people gather in the Family Center at C.S. Mott Children’s Hospital in Ann Arbor, Michigan. Some are former patients, some are staff, and most are parents of pediatric patients, some of whom are deceased. They have been invited to share their perspectives and to help improve administrative decision making and care delivery.

I was first introduced to the concept patient- and family-centered care (PFCC) by this patient- and family advisory council (PFAC), an advisory body that promotes the inclusion of patient and family member perspectives in making organizational and practice decisions. As a student member over the past year, I’ve observed the dedication of these council members to improving health care culture by promoting PFCC values.

PFCC is built upon four fundamental principles: treating patients and families with respect and dignity, sharing information, encouraging their participation in care and decision making, and fostering collaboration in care delivery and program design, implementation, and evaluation [1]. At its core, PFCC is about including patients and families in all aspects of health care.

As part of a broader movement towards participatory medicine that advocates for collaborative partnerships in health care [2], PFCC means developing partnerships with patients and their families; recognizing their expertise by involving them as members of clinical care teams, advisory committees, and regulatory research boards; and promoting inclusion of patients and their loved ones in bedside and systems-level health care dialogues. Physicians can learn from patients and their families, and it is our responsibility to do so.

I first became interested in better understanding patients’ perspectives as an English major exploring disability studies and narrative medicine; I sought to understand persons’ health care experiences through their narratives. PFCC models of thinking encouraged me to broaden my scope and to appreciate the interconnectedness of patients’ and family members’ experiences. Although PFCC originated in pediatrics, the importance of families extends to all medical practice [3].

As I learned more about the tenets of PFCC and the many forms that PFCC takes in practice, I began to wonder about when and how striving to deliver inclusive care can be ethically complex. How should medicine accommodate families alongside patients, and what ethical challenges arise when trying to do so? Accordingly, this theme issue of the AMA Journal of Ethics considers some of the ethical challenges of implementing PFCC. In an attempt to make this issue as “patient- and family-centered” as possible, I invited feedback from the Mott PFAC and included patients and family members as authors…

 

Read the rest of this article at the AMA Journal of Ethics.

 

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[AMA Journal of Ethics] Jan 2016: Promises and Challenges in Patient- and Family-Centered Care

Over the past year, I have had the honor of being a theme issue editor for the American Medical Association’s Journal of Ethics. I am excited to announce that my theme issue about “Promises and Challenges in Patient- and Family-Centered Care” has just been published!

As someone usually on the writer’s side of things, I’ve really enjoyed this opportunity to get a better sense of the editorial process. Patient- and Family-Centered Care (PFCC) is something I’m passionate about, and putting together this journal issue was a unique opportunity for me to further explore the field.

As an issue editor, I had the chance to reach out to national experts, write up several theme-related ethics cases, and assist in providing edits of the articles. It’s been a great way for me to delve deeper into one of my areas of interest in ethics.

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A noon conference for pediatrics residents with Chronicling Childhood Cancer authors

Perhaps it was the ambience of a brightly lit conference room overlooking downtown Ann Arbor. Maybe it was the audience of pediatrics residents at C.S. Mott Children’s Hospital, doctors devoting their lives to caring for children. Or it may have been this event’s focus on teens sharing their own advice for doctors based on their personal experiences. Whatever it was, something was very different about the Pediatrics Noon Conference that I led about the Chronicling Childhood Cancer book project from last year’s Literati book reading/signing event.

A couple months ago, I learned that residents hardly have an opportunity to interact with pediatric patients and their families outside of clinic visits. I was surprised–while medical school is peppered with patient presentations and opportunities to learn more from patients about their experiences, it seems as though these opportunities drop off in residency since residents have patients of their own.

That was unsettling to me, though. Especially with pediatric patients, I think that giving teens and young adults the chance to share their own experiences and perspectives can be invaluable, both for these youth as well as for people who are devoting their lives to caring for these individuals. It’s also a reminder of what it means to embrace PFCC, or patient- and family-centered care: the recognition that we as clinicians must view our patients as partners in their healthcare, and in doing so, acknowledge how much we can learn from our patients. Events such as these demonstrate that there are an infinite number of ways that we can improve and better care for our patients by hearing what they have to say.

At this event, I gave a brief overview of the research project before turning it over to three of the young authors themselves. Each individual shared some of their personal experiences and advice for doctors about just how much of an impact their interactions can have on patients. While the discussion was centered largely on the teens, their parents also contributed some insight. Overall, this was a change from the typical noon conference lecture, and it sounds like many appreciated what this unique noon conference had to offer.

I was more anxious preparing for this event than I have been in a while, and I think it’s because I’m more aware of how precious time in medical education can be. I know how much people fight over this time to make an impression on doctors in the making. It truly is incredible to me that I have had this opportunity; it’s crazy to think that I have been a part of their education, that I may have been able to influence the kind of physician that some of these residents may be with their patients.

One of the highlights for me was the very end. A number of people had to leave immediately since the event concluded right at 1pm, but I was amazed by how many people still chose to stick around and speak at length with each of these patients and their families. That meant so much to me, and I know that it meant a lot to the young authors. Instead of just getting their books signed and leaving, these residents took the time to connect with the teens and their parents. In the end, I know that this was the point of it all: to give residents a chance to get to know and learn from teens with cancer in a different way, and to make space for teens to share their personal experiences.

Pediatric Noon Conference- Outline

Pediatrics Noon Conference- Slides

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Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative