The C2S blog draws on the arts, the social and biological sciences to explore the many meanings of health and "dis-ease." Designed to be a locus where patients, their families and professionals can meet on a level playing field, it is the natural off-shoot of the Cell 2 Soul Online Journal. We encourage the submission of ideas, essays, poems, stories, humor, and timely reviews relating to the humanities and health care.
ONE morning I was at a support group for patients who had survived a critical illness and their family members. It seems simple — a few doctors, a social worker, a psychiatrist, former patients and their husbands and wives, a conference room, pastries, coffee.
As many as one in three patients sick enough to require a ventilator might develop symptoms of post-traumatic stress disorder. Anxiety and depression are equally common, if not more so. The name for the constellation of symptoms often experienced by survivors of critical illness — post-intensive care syndrome.
As I.C.U. doctors, we can learn from our patients and their families and they can learn from one another, simply by sitting in a room together and paying attention to what unfolds. [Holds true for all health care professionals]
A brief article, Ask patientsWhat matters to you?” rather than “What’s the matter? by Sosena Kebede in the British Medical Journal is well worth reading.
“A lot of what matters to our patients is outside of what we can offer them as physicians, and our success in meeting their needs demands our ability to integrate our care with their lives outside of our hospitals and offices.” As an example, the Dr. Kebede recently “asked one of her patients what mattered to her, after attempted pain control did not alleviate her distress. In between tears, my patient told me about her hobbies and family. This gave a new perspective on patient care.”
As a patient, you have the right to read the notes your doctor or clinician writes about you during or after your appointment. Having the chance to read and discuss those notes with your doctor or family member can help you take better control of your health and health care.
As a healthcare professional, you may build better relationships with your patients and take better care of them when you share your visit notes.
OpenNotes is a national initiative working to give patients access to the visit notes written by their doctors, nurses, or other clinicians.
Evidence suggests that opening up visit notes to patients may make care more efficient, improve communication, and most importantly may help patients become more actively involved with their health and health care.
"Smart Patients is an online community for motivated patients and their families and friends. You can learn at your own level about scientific developments related to your condition, share your questions and concerns with other members, and use what you learn in the context of your own life.
We believe patients are the most underutilized resource in healthcare. We've watched patients become experts in their conditions — and we see that their knowledge improves the care they receive. With the right tools, you and other patients can do the same."
This is an interesting and valuable tool for motivated patients, care-givers and health care providers.
These commandments appeared in the British Journal of General Practice. While they refer mostly to therapeutics, they are applicable to most doctor-patient interactions. We have edited the BJGP article as it was too verbose. Please feel free to edit what we provide as it can still be improved.
Ranjana Srivastava has a memorable essay in the New England Journal of Medicine about listening to patients. Her piece, entitled “Nourishment” speaks to all of us in health care.
She writes that a patient, former pastor, told her “The gift of silent communion is the greatest gift you can give someone.” She learned that with some patients “instead of listening in order to reply, I [now] listen to understand, shielded temporarily from the pressure of performance.”
This reminded me of some lines Andre Dubus wrote in a short story that described how often people confessed their problems to him “and I listened and talked a lot and and never helped anyone at all. So now if someone comes to me I offer what I know I can give: the friendship of a listening face.”* Srivastava has some remarkably insights in her Perspective piece in the November 26, 2015 New England Journal of Medicine. It’s a keeper! Download Nourishment.Srivastava
*Andre Dubus, “We Don’t Live Here Anymore” appears in the collection “Separate Flights.”
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug. Modern version of Hippocratic Oath
In this inspiring 90-minute documentary, filmmaker David Grubin takes his camera across America to focus on the challenges and triumphs in our country’s health care delivery system. The four segments that comprise Rx: The Quiet Revolution introduce us to a diverse group of doctors, nurses, and health care professionals who are transforming the way we receive our medical care: lowering costs by placing the patient at the center of their practice.
Rx: The Quiet Revolution shows us what’s happening from Maine to Mississippi, California to Alaska. You will see physicians, nurses and other healthcare professionals placing the patient at the center of their practice — transforming the way medical care is delivered while lowering costs and improving outcomes.
Filmmaker David Grubin brings you these compelling stories:
In Maine, we meet Dr. David Loxterkamp, who practices family medicine with a team of doctors working to treat patients with chronic illnesses.
In Mississippi, a state with more diabetes cases than any other, Grubin finds a rural health clinic fighting diabetes with the aid of an electronic communications device that provides greater access to medical care, helping patients take responsibility for managing this devastating chronic disease.
In San Francisco, Grubin visits a health care facility for seniors called On Lok, dedicated to making it possible for frail, elderly Americans in need of nursing home care to live with dignity in their own homes.
In Alaska, the documentary follows Native Alaskans who own and operate their own health system, caring for 65,000 people across 107,000 square miles. In spite of the number of patients and the vast distances between them, they are determined to foster an empathetic relationship between patients and their health care providers.
At 90 minutes, this may seem a daunting investment in time, but Rx: The Quiet Revolution will speak to you in powerful and compelling ways.
This is a new series in the British Medical Journal that puts the patients on the podium as teachers for physicians and other health care workers.
“Though patients and carers are becoming more involved in the ongoing education of healthcare staff, we rarely have the chance to set the agenda for what we would like you to learn. In our new patient led and patient authored series, What Your Patient is Thinking, we hope to redress this balance a little. The points made will range from practical hints and tips for meeting needs specific to certain conditions through to challenges to the medical status quo. What they will all do is offer practical things you can do differently tomorrow as a result of reading what we have to say.”
There is so much more to learn, and it appears that we have ignored a vital resource in our professional education: our patients and their families. The BMJ is pointing us towards the obvious. It is sad that so little ink has been spent on this area.
Other resources include:
Patient Voices Programme (U.K.) is partly an attempt to redress the balance of power between healthcare clinicians and managers and the people they serve, and partly an attempt to give decision-makers a different kind of opportunity to understand the needs of patients – other than the dry results of surveys and statistics.
Patients as Partners | Patient Voices Network (British Columbia): As experts in our own lives, we can provide health system decision-makers with important information about how to best serve patients and involve us as partners in our own care. It is important for patients to participate in decision-making so that B.C.’s health care system reflects the needs and priorities of those it serves—the patients.
Elizabeth Holmes (born 1984) is an American chemical and electrical engineer and entrepreneur. After droppingoutof Stanford at age 19, she founded Theranos, a health technology and medical laboratory services company that is now valued at ~ $9 billion.
Homes is the subject of a curious December 15, 2014 New Yorker profile, Blood Simpler, and gave a thought-provoking TedMed talk this past September.