Reading this book brought back many memories for me. Some beginning when I as a young child, I first became a patient. Other memories originated from my nursing career as well as from being an adult patient. Those memories came along with me as I read this book and periodically pricked at me, resulting in some ‘aha’ moments. Some memories were heart-warming; others brought on a sensation of sadness, still others rekindled annoyance, sometimes even anger, as occurred when recently discharged alone from ER to lobby at 4AM. I consider this a sign of an exceptionally good book.
Each chapter in Patientology builds on the original premise that patients are not a participating part of the Health Care Delivery System (HCDS). This continues to be true in many instances, although innovations are periodically tested with enlightened focus on patient participation.
It is important to begin reading this book with the Preface as it provides important background information and examples that explain the history behind this book, as initially crafted, beginning in 1974. When Dr. Brink studied Victimology and she quickly saw the relevance to her own patient and nursing experiences as well as those of others in relationship to being a victim.
I think most of us can recall times when we felt like helpless patient victims and when we most needed understanding. Many of us also recall at least one truly positive patient experience. Mine came when in extreme pain after surgery, the night nurse commented on my low moan, asked if I was in pain, and not only gave me much needed pain medication, but also took time to give me a back rub. Her kindness and hands-on-care dissipated the tension and eased the pain as much if not more than the narcotic. Now instead of back rubs there are electrified mattress pads that massage bed-ridden patients. Technology while innovative and time saving also removes the need and motivation to spend time learning about the patient beyond the intake questionnaires. Staffing issues and the time needed to manage the technology shortens the time clinicians have for patients.
On page 4, Dr. Brink asks, “What Can We Learn from the Study of Patients?” This question sets the tone and agenda for the first chapter and all the subsequent ones. In Chapter 3, Dr. Brink calls “. . . attention to patients as an integral part . . .” of the HCDS. Making the point that removing the ‘C’ and ‘D’ for care delivery and making it the Health System means that “The patient, then, becomes an integral part of the health system as the recipient of care” (page 24). Subsequent chapters focused on The Patient’s Career, The Patient as a Victim and The Patient Perspective all demonstrate the absence in many situations of the patient as part of the system.
In recent years some health researchers are using participatory strategies to involve the people we formerly called “research subjects” as direct participants in the research process. The strategy works particularly well with qualitative designs serving to involve people in the research endeavor and enabling them to assist in planning projects that are truly relevant to their beliefs, values, and daily lives. In many cases those participants go on to work in their communities designing projects and securing funds. This much participation in the Health System (HS) would be un-realistic; however, I have noticed that some clinicians now do pay more attention to the patient as a person not just as a condition needing unquestioned treatment. I hope we don’t lose sight of that goal. Thank you, Dr. Brink, for giving us the incentive to be more attentive to patients and more inclusive of them in decision making.