Participatory Healthcare

A Person-Centered Approach to Healthcare Transformation

Jan Oldenburg, Mary P. Griskewicz, Jan Oldenburg, Mary P. Griskewicz

• Publisher: CRC Press
• Year: 2016
• ISBN:
  9781315350059
• Edition: 1
• Topic: Business
• Subtopic: Operations
• Index: Business

This book is written through the lens of patients, caregivers, healthcare representatives and families, highlighting new models of interaction between providers and patients and what people would like in their healthcae experience. It will envision a new kind of healthcare system that recommends on how/why providers must connect to patients and families using HIT, as well as suggestions about new kinds of HIT capabilities and how they would redesign systems of care if they could. The book will emphasize best practices, and case studies, drawing conclusions about new models of care from the stories and input of patients and their families reienforced with clinical research.

II

PATIENT AND CAREGIVER STORIES

Jan Oldenburg, FHIMSS

Introduction

Illnesses unfold as stories, and physicians need to learn how to listen to those stories.¹

Furthermore, listening carefully to individual stories acknowledges personal engagement and fosters motivation…²

The Experience of Illness

There is nothing glamorous about being sick, nor about being the caregiver for someone who is. Illness leaves a mark: It can change a person’s perception of vulnerability and sense of control over his or her body and the world. Studies have shown that the experience of illness—as well as the social stigma we attach to it—can have long-term negative effects on an individual’s sense of self and body image.³,⁴

Being sick interrupts the expectations and beliefs people have about themselves and their lives. Even a relatively minor illness can result in rumination about the experience as the person tries to understand what happened and the ways life has changed because his or her health status has changed. Mike Bury suggests that “under conditions of adversity, individuals often feel a pressing need to reexamine and refashion their personal narratives in an attempt to maintain a sense of identity.”⁵

Being sick, especially over the long term, can reduce a person’s overall sense of hope about the future. People with chronic illnesses are more susceptible to depression than the general population,⁶ and depression can compound the difficulty of coping with illness. Illness, especially something with a sudden onset, can be traumatic. There is evidence that severe illness can result in posttraumatic stress disorder (PTSD),⁷ and nearly one in eight people who have had a heart attack go on to develop PTSD symptoms.⁸ The impact of illness does not just affect the sick person, but may impact the whole family, especially spouses or caregivers such as parents or children who take on the bulk of caregiving. Multiple studies have found higher rates of depression among caregivers than among peers who are not responsible for caregiving.

In her story “An e-Champion for Alexis,” Catherine Rose discusses the need for respite when you are the ones responsible for the long-term care of a disabled child. In “Living Well with Lupus” Amanda talks about the stress of knowing that another flare might happen at any moment, and the impact that’s had on her life and career. Even more temporary illnesses leave both psychic and physical scars, as coping with pain and managing acute or chronic illness takes time, energy, and attention away from other, more pleasurable or fulfilling activities.

The Healing Power of Compassionate Listening

We know that having the opportunity to tell their stories can be an effective part of treatment for patients. A recent study showed that hypertension patients who had the opportunity to tell their own stories and listen to the stories of others with the same condition actually experienced lowered blood pressures.⁹ A variety of studies have shown that healing benefits result from an empathetic encounter between a physician and patient, including improved patient satisfaction, enhanced clinical outcomes, increased likelihood patients will follow an agreed-upon treatment approach, and fewer malpractice complaints.^10–12

Perhaps equally importantly, several studies have shown that empathetic physician–patient encounters also lead to increased physician health, decreased burnout, and enhanced professional satisfaction.¹³

This book is enriched by the courage of those who shared their stories because the stories are powerful in their own right and offer important insights into ways we can change systems, processes, and training to improve the experience of illness.

Patient and Caregiver Stories

The patient and caregiver stories in this book bring the experience of being sick to life. Some stories center around an acute event or illness; others record the long-term experience of living with one or more chronic diseases. The people who shared them were willing to reveal the intimate and messy experience of illness and recovery; their interactions with doctors, nurses, insurers, and the healthcare system overall; how their encounters felt in the moment; and how they have interpreted the experience over time.

Some of the stories included here are about people who are quite public about their illness or caregiving experiences and speak, write, or tweet about them often. Other stories are told by those for whom illness has been a more private and personal experience; for some, this is the first time they have talked publicly about their disease or experience. Together, they spotlight the many faces of sickness, the individuality of reactions, and the opportunities to bring innovation and change to the way care is imagined and delivered.

Some of you may ask, “But are these stories true? Are they medically accurate? Do they really describe what happened?” There are no simple answers to those questions. We have tried to provide context about the diseases and conditions they describe, but we did not interview these patient’s doctors or review their patient records to ensure medical accuracy. Some situations, as recounted, may lead medical professionals to say, “It can’t possibly have happened quite like that.” But that is not a reason for discounting the stories told here. These stories describe the impact of illness on the lives of real people. These stories highlight the way specific care experiences either support recovery or detract from it. They help us understand how we could redesign the healthcare system to better serve these individuals and others like them as patients, as individuals, as family members.

Oliver Sacks, the famous neuroscientist and writer, talked about memory and narrative truth in a New York Review of Books essay, entitled “Speak, Memory,” published shortly before his death in 2015:

There is, it seems, no mechanism in the mind or the brain for ensuring the truth, or at least the veridical character, of our recollections. We have no direct access to historical truth, and what we feel or assert to be true (as Helen Keller was in a very good position to note) depends as much on our imagination as our senses.… Frequently, our only truth is narrative truth, the stories we tell each other, and ourselves—the stories we continually recategorize and refine. Such subjectivity is built into the very nature of memory, and follows from its basis and mechanisms in the human brain. The wonder is that aberrations of a gross sort are relatively rare, and that, for the most part, our memories are relatively solid and reliable.¹⁴

These stories represent “narrative truth” for their tellers: They explain the way the experience of illness and the care received has been processed, internalized, and understood by real people. Listening to the lived experiences of individuals, whether in the context of this book, a case consultation, or a patient council requires stepping out of defensiveness and distancing ourselves from our truth to listen to someone else’s truth. The act of listening, truly listening, to a patient is healing for the person by bringing their reality into focus. The true story of illness is a collaboration between the person, his or her physicians, and the family and friends who help interpret the story and determine the meaning of the experience.

This idea is reinforced by Dr. Arthur Kleinman, a medical practitioner writing in the 1980s, who said:

Illness has meaning; and to understand how it obtains meaning is to understand something fundamental about illness, about care and perhaps about life generally… an interpretation of illness is something that patients, families and practitioners need to undertake together. For there is a dialectic at the heart of healing that brings the care giver into the uncertain, fearful world of pain and disability and that reciprocally introduces patient and family into the equally uncertain world of therapeutic actions…One unintended outcome of the modern transformation of the medical care system is that it does just about everything to drive the practitioner’s attention away from the experience of illness.¹⁵

Conclusion

These stories highlight the things we still need to change in the culture and practice of American medicine. Each story contains a set of “observations for policy and practice” that discuss key ideas and issues raised by the story. The stories illustrate that there is a long distance to travel to make the experience of being a patient consistently compassionate, convenient, connected, and healing. Further, there are enormous opportunities for us to be more creative in the tools and technologies we offer patients—both when they are in the purview of the medical system and in the daily tasks of living with illness or caring for someone who is ill.

We do not want to romanticize illness or the sacrifices that caregivers make when taking care of a sick family member or friend. Yet there is a compelling theme in these stories. People make meaning from the experience of being sick, sometimes through the way they incorporate illness into the narrative of their lives, sometimes by imbuing it with a spiritual meaning, or by turning the experience of illness into a mission and a part of their life’s work. This ability to make meaning out of the suffering of illness surely speaks of resilience and the triumph of the human spirit.

We hope you find this book helpful as you contemplate your healthcare experiences as patient, caregiver, provider, or system designer. The experience of illness is one of the things that leads us to encounter our humanity. Only by listening to the experiences of others, discussing them, contemplating how we’d like to be cared for, can we together design the kind of healthcare system that we’d all like to experience.

Notes

1. http://www.huffingtonpost.com/richard-c-senelick-md/patient-care_b_1410115.html

2. http://munich.thechanger.org/blog/telling-stories-impact-storytelling-contributes-organizational-development-social-enterprises-non-profits/

3. http://www.bradley.edu/sites/bodyproject/disability/illness/

4. http://www.jblearning.com/samples/0763744611/4461_ch02_pass3.pdf

5. http://onlinelibrary.wiley.com/doi/10.1111/1467-9566.00252/pdf

6. http://www.webmd.com/depression/guide/chronic-illnesses-depression

7. http://www.healthcommunities.com/posttraumatic-stress-disorder-ptsd/serious-illness-ptsd.shtml

8. http://www.health.harvard.edu/blog/heart-attack-can-trigger-ptsd-201206254939

9. http://annals.org/article.aspx?articleid=746718

10. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4294163/

11. http://www.ncbi.nlm.nih.gov/pubmed/19150199

12. http://www.sciencedirect.com/science/article/pii/S0738399113005211

13. http://www.ncbi.nlm.nih.gov/pubmed/19773563

14. “Speak, Memory” by Oliver Sacks, originally published in The New York Review of Books. Copyright © 2013 by Oliver Sacks, used by permission of The Wylie Agency LLC. http://www.nybooks.com/articles/archives/2013/feb/21/speak-memory/

15. The Illness Narratives: Suffering, Healing, and The Human Condition by Arthur Kleinman, MD, copyright© 1988. Reprinted by permission of Basic Books, a member of the Perseus Books Group. https://books.google.com/books?id=dPN5N2qKGCwC

Story 1: A Cost-Conscious Consumer: “And What Will That Cost Me?”

Jan Oldenburg, FHIMSS with Kelly

Introduction

Kelly has been self-employed for years and is used to buying coverage on the individual market—has done so since 1995, in fact—but in order to keep the same price, he has had to raise his deductible ea...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• Foreword
• Preface
• Editors
• Contributors
• SECTION I ESSAYS FROM THE FIELD: HEALTHCARE REIMAGINED FROM THE PATIENT AND CAREGIVER PERSPECTIVE
• SECTION II PATIENT AND CAREGIVER STORIES
• Afterword
• Index