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The Patient as Agent of Health and Health CareReview - The Patient as Agent of Health and Health Care
Autonomy in Patient-Centered Care for Chronic Conditions
by Mark D. Sullivan
Oxford University Press, 2017
Review by Margaret Riley, PhD, RN
Jun 19th 2018 (Volume 22, Issue 25)

When I requested this book to read and review, I admit I was hesitant:  it is a rather long read (just under 400 pages), and I anticipated it to be "heavy."  Indeed, the topic of health and health care is serious, and has the potential to be controversial - with possible religious and political overtones, as well as confusing information about patient care - diagnoses and treatments.  Personally, I was less concerned about being overwhelmed by the patient care aspect of diagnosis and treatment, than becoming embroiled in politics and policies.  Sullivan's book was a pleasant surprise.  While I found some of the concepts repetitive, each time an idea was visited and revisited, he did view it at least partially, through a different lens.

The book provides an interesting viewpoint as to the relationship of diagnosis and treatment, and the focus of the medical model on this as the foundation for patient care.  Patients and their actions, buy-in, and compliance are intertwined within this diagnosis and treatment plan, perhaps not in the most beneficial way.  There is much discussion as to how diagnosis of disease  naturally means a focus on the disease process and its related treatment, perhaps without much regard to what the patient is interested in.  Also, how the patient's life may best accommodate the symptoms, and recommendations for coping and improving them.

"Patient-centered care" is definitely a popular phrase in health care currently.  In nursing, sometimes I wonder if it is being used without much regard for what it means.  Sullivan attempts to clarify what patient-centered care is.  How does it look and how do medical professionals center care around patients?  Does this truly include the patient?  Or is it more designed around the patient, with the expectation that the patient somehow fit themselves into the care?  This is a thoughtful concern, as I think about the models of health care I have been immersed in for almost 36 years, I too can toss the phrase "patient-centered care" around, and make a statement that I have tried to ensure my patient care was always patient-centered.  However, as I read the many references to patient-centered care in Sullivan's book, and the different angles he approached it from, I realized this is not a phrase that is easy to define.  With consideration for his description of medicine being diagnosis and treatment oriented, I found myself thinking sometimes it may not be patient-centered at all, to attempt to fit people into diagnosis and treatment related planning, even as nurses claim the nursing care plan approach includes a holistic approach.

One of the main themes I noted is the notion of acute vs. chronic pain, and how significant a diagnosis chronic pain is.  From the book, "chronic pain costs the United States more than $600 billion annually in health care costs and lost productivity.  About 100 million US adults suffer from common chronic pain conditions, which is more than the number affected by heart disease, diabetes, and cancer combined" (p. 136).  A distinction I found interesting, and simple, was a brief discussion of the difference in treatment of acute and chronic pain:  acute care - healing is usually achieved by rest; chronic care - healing (and/or prevention) tends to come from activity (p. 96).  This led me to further reflection.  In both cases, it is not always easy for the patient to follow the treatment plan for either acute or chronic pain.  Often, in spite of acute pain, people may find it difficult to take the time to rest to the extent needed, based on concerns for lost wages, or other outside influences.  With chronic pain, there is often a cycle involved, that may include pain, leading to inactivity - leading to weight gain -- leading to excess strain on joints - leading to more pain and an inability to be active ...  Thus, the cycle continues, and inactivity prevails, allowing the chronicity of pain to continue.  And this led me to consideration of quality of life and how chronic illness affects patients' lives. 

Having worked at the bedside in the acute care (specifically Intensive Care) setting for several years, the patient's environment was often a consideration and discussion point.  What was their home like?  As nursing care was planned, the background and environment the patient came from (and was most likely to return to) was a necessary consideration.  Socioeconomic status, education status, literacy, community, family and social support - all those and more have to be included.   These historical considerations may shed light on what the focus has been in the past, how that has been working for them (improvement in health and wellness or more frequent exacerbations of disease and increased necessity for treatment).  Of the utmost importance is the patient's perception of their own status as healthy or ill.

Medicine and health care traditionally focuses on diagnosis and related treatment. Much of Sullivan's book is based on chronic illness, most especially chronic pain.  There is an interesting introduction of pain theory, including centuries-old Cartesian theory of pain that resembles reflex pathways and the more recent Gate Control Theory (p. 136), which includes description of pain perception as going through an open gate, or if inhibited, not traveling through a closed gate.  The gate can be opened and closed by neurological and chemical responses, including the release of natural pain-control (e.g. endorphins) or exogenous pain control (e.g. drugs).

Whether treating chronic pain, or other diagnoses, the focus is different for chronicity and acuity.  Acute care, often by necessity of patient care, includes less direct action by the patient, as their actions were more likely an influence prior to the acute exacerbation.  In the case, for example, of critical care, the patient is often not actively involved in their care, rather, care is placed upon them, and they are passive recipients.  It is during times of less illness/more health or wellness (improved QOL) the patient is an active agent in their own care.  Since ideally, this involves much more time than those acute episodes or exacerbations,  it is during these times of wellness or positive coping with chronic illness, that the patient is active in their health behaviors.  Whether following the recommended treatment plan, or displaying what is often termed "noncompliance," the patient is being the true agent of his or her own health care.  These times are therefore of much more influence on the patient's health than times of acute illness.

Sullivan presents information relative to reimbursement, including some discussion of policy and politics.  This includes a single-payer system, and some frank information as to what that means, and what the Affordable Care Act (ACA) is (or was), and what it was not.  What seems to be definitive is that primary care is critical - for health and wellness, prevention of illness, and ultimately inclusion as a necessary consideration in acute and chronic ailments/diagnoses. 

Autonomy and empowerment must be fostered, in order to provide the education and support necessary to create patients who have a capacity for self-direction and can truly become agents of their own health.  In so doing, the potential is there for patients to also have more interest in, and ability to understand, their health care, and what that means to them.  With Sullivan's premises, the likelihood of change within the patient-provider relationship increases - embracing more direction and input from the patient, and a more collaborative method of planning and delivering care.

As mentioned in the first paragraph of this review, I was initially hesitant to read this book, anticipating a dry textbook-type read.  While the subject is not likely to appeal to everyone, it is actually something all should be interested in, and desire to know more about and perhaps be more involved in.  For the benefit of one's own health, access to health care resources, and for those employed in health care, there is certainly much food for thought.

And I have to mention:  the book was not dry at all!  Sullivan has an interesting manner in his writing, whereby I found myself thinking it would be interesting to have a face-to-face discussion with him.  His background as an anesthesiologist, pain-control expert, and obviously skilled clinician, made me think of stimulating discussion into topics I have been interested in as a bedside nurse as well as a nurse educator.  I also found the patient case studies presented throughout the book to be a fabulous way to introduce actual people, with actual, and indeed common concerns, and very human behaviors.  These people were excellent at personifying difficult concepts and patient care challenges.  They illustrated some of the challenges of medical treatment, and of implementing patient-centered care, and what is indeed important to patients with various physical concerns.  The book provides a truly holistic approach and a thorough provision of information on a variety of subjects that truly comprise the possibility of "the patient as agent of health and health care."

 

© 2018 Margaret Riley

 

BIO:  Margaret Riley, PhD, RN. Margaret is a Registered Nurse, with experience in a high-acuity Intensive Care Unit.  She is also an experienced nurse educator, having been faculty in clinical and classroom since 2006.  Currently, she is the Program Chair of an LPN-BSN program.  Her dissertation was a phenomenological study, titled, "The Lived Experience of Novice Nurses Who Have Based Decisions on Intuition."


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