Doctor, will my child be normal?
As a pediatric cardiologist and a developmental pediatrician, this question is part of daily conversations for us. The words or silence we provide in those initial moments shape a before and after moment in parents lives. We consider and reconsider what parents need to process and to decide what is best for their children. Sometimes we are able to perceive what parents need and sometimes we make mistakes in understanding how to respond to them. Yet those moments are why we entered medicine in the first place, and they take time.
Time is a scarce resource in our current medical system. Doctors know what they need to do for their patients but often do not have the time or resources to do it. As a result, many are frustrated and leaving the profession, despite the calling they felt when they decided to become doctors in the first place. This is also the climate where new physicians are trained.
The uncertain future of the U.S. health care system underscores the deeper uncertainties physicians face in their daily conversations with concerned patients and families. In 2014 essayist and poet Meghan ORourke wrote, Ours is a technologically proficient but emotionally deficient and inconsistent medical system that is best at treating acute, not chronic, problems. As our technology has advanced, we are able to care for more individuals with chronic medical conditions. Many of the issues that are dealt with in these visits involve time and effective communication. And it is well established that patient outcomes are related to effective communication with their doctors.
Communication matters in other ways. Writer Ursula K. Le Guin has written: Words are events, they do things, change things. Her words are particularly poignant as we consider our current society where Pres. Donald Trumps tweets become daily news headlines, including his perspective on Charlie Gard, an 11-month-old child in the U.K. with a rare neurologic disease who was ordered moved to a hospice last week, where life support was to be withdrawn.
His parents had advocated that he should receive treatment for a rare mitochondrial disease in the U.S. whereas his physicians opposed further intervention. This case brought to light many issues and questions, including the best interest of the patient, financial considerations and scientific validity of a treatment. It has also highlighted the consequences from the breakdown of patient-family-physician communication. This is not a new situation but one that deserves to be revisited with attempts to understand how to make it better.
Many diagnoses such as a throat infection or pneumonia can have relatively simple treatment and follow-up care accompanied by a predictable pathway of medical management and prognosis. When the diagnosis is complex and associated with other comorbidities as often is the case for children with congenital heart disease and developmental differences, however, uncertainty can become the focus of the conversation. The future may involve multiple surgeries, therapies, educational supports, developmental delays, genetic disorders and the potential for long-term careand the conversation cannot occur in convenient time allotments. It has to allow for families to process information and revisit the questions over and over again. Most importantly, patients and families need to understand that although circumstances are difficult, there is also room for hope.
Patients, families, and physicians come to these encounters with their own expectations and lenses through which they understand communication. Culture influences these encounters, and it can quickly lead to misunderstandings and consequences, such as those manifested in Anne Fadimans 1997 book, The Spirit Catches You and You Fall Down. In addition, physicians own emotions shape these encounters, as described in Danielle Ofris 2017 book, What Doctors Feel.
Fadimans book marks a more idealistic time in our own development as physicians, where we could not imagine we would ever make those mistakes and we would make sure we spent time with patients and families so it did not happen. Ofris most recent book resonates as we reflect on how our own resolved and unresolved emotions shape our interactions with patients and families. And this can result in the breakdown of communication.
When asked about the most trying part of being a physician, our colleagues and our own responses may include the following: to cure, to heal, to fixwhile not making mistakes. This may be what is expected of us, yet the most difficult part may be not in the technical aspects but in the art of doctorpatient communication, the act of delivering difficult news. Especially if the results cannot be fixed or healed. And if this is the case, then time is one aspect that allows patients and families to be at the center of the healing relationship.
A diagnosis has meaning. It gives a name to the struggles and pain that individuals and families experience. It matters how it is delivered and who delivers it, especially when there is uncertainty and not a clear path. These conversations should provide a pathway to relieve struggles, provide support and alleviate suffering.
See the original post:
Meaningful Conversation Is a Crucial Part of Medicine - Scientific American (blog)
- Yes, But. The Annotated Atlantic. - November 7th, 2009 [November 7th, 2009]
- Health Insurance Benefit Costs by Region - November 8th, 2009 [November 8th, 2009]
- For an Operator, Please Press... - November 8th, 2009 [November 8th, 2009]
- Pollyanna With a Pen: Maine Governor Signs 18 New Health Care Bills into Law - November 8th, 2009 [November 8th, 2009]
- AMA Sounds the Alarm, Medicare Making Yet Another Attempt to Cut Reimbursement - November 8th, 2009 [November 8th, 2009]
- Mass Governor Asks Blue Cross to Keep Higher Employer Contribution - November 8th, 2009 [November 8th, 2009]
- Lifespan and Care New England Plan Monopoly (Again) - November 8th, 2009 [November 8th, 2009]
- Dirigo Health: Con Artists, Liars, and Thieves? - November 8th, 2009 [November 8th, 2009]
- New Orleans: Health Challenges - November 8th, 2009 [November 8th, 2009]
- August a Flurry of Activity - November 8th, 2009 [November 8th, 2009]
- Maine's Dirigo Health Savings One-Third of Original Estimate - November 8th, 2009 [November 8th, 2009]
- “Methodolatry”: My new favorite term for one of the shortcomings of evidence-based medicine - November 8th, 2009 [November 8th, 2009]
- Suzanne Somers’ Knockout: Dangerous misinformation about cancer (part 1) - November 8th, 2009 [November 8th, 2009]
- A science-based blog about GMO - November 8th, 2009 [November 8th, 2009]
- A Not-So-Split Decision - November 8th, 2009 [November 8th, 2009]
- Military Medicine in Iraq - November 8th, 2009 [November 8th, 2009]
- The effective wordsmithing of Amy Wallace - November 8th, 2009 [November 8th, 2009]
- A Science Lesson from a Homeopath and Behavioral Optometrist - November 8th, 2009 [November 8th, 2009]
- Join CFI in opposing funding mandates for quackery in health care reform - November 8th, 2009 [November 8th, 2009]
- Mainstreaming Science-Based Medicine: A Novel Approach - November 8th, 2009 [November 8th, 2009]
- Those who live in glass houses… - November 8th, 2009 [November 8th, 2009]
- J.B. Handley of the anti-vaccine group Generation Rescue: Misogynistic attacks on journalists who champion science - November 8th, 2009 [November 8th, 2009]
- When homeopaths attack medicine and physics - November 8th, 2009 [November 8th, 2009]
- The cancer screening kerfuffle erupts again: “Rethinking” screening for breast and prostate cancer - November 8th, 2009 [November 8th, 2009]
- All Medicines Are Poison! - November 8th, 2009 [November 8th, 2009]
- When Loud Wins: Will Your Tax Dollars Pay For Prayer? - November 8th, 2009 [November 8th, 2009]
- It’s All in Your Head - November 8th, 2009 [November 8th, 2009]
- The Skeptical O.B. joins the Science-Based Medicine crew - November 8th, 2009 [November 8th, 2009]
- The Tragic Death Toll of Homebirth - November 8th, 2009 [November 8th, 2009]
- What’s the right C-section rate? Higher than you think. - November 8th, 2009 [November 8th, 2009]
- Recombinant Human Antithrombin – Milking Nanny Goats for Big Bucks - December 13th, 2009 [December 13th, 2009]
- Does C-section increase the rate of neonatal death? - December 13th, 2009 [December 13th, 2009]
- Man in Coma 23 Years – Is He Really Conscious? - December 13th, 2009 [December 13th, 2009]
- Why Universal Hepatitis B Vaccination Isn’t Quite Universal - December 13th, 2009 [December 13th, 2009]
- Ontario naturopathic prescribing proposal is bad medicine - December 13th, 2009 [December 13th, 2009]
- Naturopaths and the anti-vaccine movement: Hijacking the law in service of pseudoscience - December 13th, 2009 [December 13th, 2009]
- The Institute for Science in Medicine enters the health care reform fray - December 13th, 2009 [December 13th, 2009]
- Neti pots – Ancient Ayurvedic Treatment Validated by Scientific Evidence - December 13th, 2009 [December 13th, 2009]
- Early Intervention for Autism - December 13th, 2009 [December 13th, 2009]
- A temporary reprieve from legislative madness - December 13th, 2009 [December 13th, 2009]
- A critique of the leading study of American homebirth - December 13th, 2009 [December 13th, 2009]
- Lose those holiday pounds - December 13th, 2009 [December 13th, 2009]
- Endocrine disruptors—the one true cause? - December 13th, 2009 [December 13th, 2009]
- Acupuncture for Chronic Prostatitis/Chronic Pelvic Pain Syndrome - December 13th, 2009 [December 13th, 2009]
- Evidence in Medicine: Experimental Studies - December 13th, 2009 [December 13th, 2009]
- Midwives and the assault on scientific evidence - December 13th, 2009 [December 13th, 2009]
- The Mammogram Post-Mortem - December 13th, 2009 [December 13th, 2009]
- An Influenza Recap: The End of the Second Wave - December 13th, 2009 [December 13th, 2009]
- The End of Chiropractic - December 13th, 2009 [December 13th, 2009]
- Cell phones and cancer again, or: Oh, no! My cell phone’s going to give me cancer! (revisited) - December 20th, 2009 [December 20th, 2009]
- Another wrinkle to the USPSTF mammogram guidelines kerfuffle: What about African-American women? - December 20th, 2009 [December 20th, 2009]
- Acupuncture, the P-Value Fallacy, and Honesty - December 20th, 2009 [December 20th, 2009]
- The One True Cause of All Disease - December 20th, 2009 [December 20th, 2009]
- Communicating with the Locked-In - December 20th, 2009 [December 20th, 2009]
- Are the benefits of breastfeeding oversold? - December 20th, 2009 [December 20th, 2009]
- Measles - December 20th, 2009 [December 20th, 2009]
- Radiation from medical imaging and cancer risk - December 21st, 2009 [December 21st, 2009]
- Multiple Sclerosis and Irrational Exuberance - December 21st, 2009 [December 21st, 2009]
- Medical Fun with Christmas Carols - December 22nd, 2009 [December 22nd, 2009]
- Lithium for ALS – Angioplasty for MS - December 23rd, 2009 [December 23rd, 2009]
- “Toxins”: the new evil humours - December 24th, 2009 [December 24th, 2009]
- 2009’s Top 5 Threats To Science In Medicine - December 24th, 2009 [December 24th, 2009]
- Buteyko Breathing Technique – Nothing to Hyperventilate About - December 26th, 2009 [December 26th, 2009]
- The Graston Technique – Inducing Microtrauma with Instruments - December 29th, 2009 [December 29th, 2009]
- The “pharma shill” gambit - December 29th, 2009 [December 29th, 2009]
- Ginkgo biloba – No Effect - December 30th, 2009 [December 30th, 2009]
- Oppose “Big Floss”; practice alternative dentistry - January 1st, 2010 [January 1st, 2010]
- Causation and Hill’s Criteria - January 3rd, 2010 [January 3rd, 2010]
- The life cycle of translational research - January 10th, 2010 [January 10th, 2010]
- The anti-vaccine movement strikes back against Dr. Paul Offit - January 10th, 2010 [January 10th, 2010]
- Osteoporosis Drugs: Good Medicine or Big Pharma Scam? - January 10th, 2010 [January 10th, 2010]
- Acupuncture for Hot Flashes - January 10th, 2010 [January 10th, 2010]
- The case for neonatal circumcision - January 10th, 2010 [January 10th, 2010]
- A victory for science-based medicine - January 10th, 2010 [January 10th, 2010]
- James Ray and testosterone replacement therapy (TRT) - January 10th, 2010 [January 10th, 2010]
- The Water Cure: Another Example of Self Deception and the “Lone Genius” - January 12th, 2010 [January 12th, 2010]
- Be careful what you wish for, Dr. Dossey, you just might get it - January 13th, 2010 [January 13th, 2010]
- You. You. Who are you calling a You You? - January 15th, 2010 [January 15th, 2010]
- The War on Salt - January 16th, 2010 [January 16th, 2010]
- Is breech vaginal delivery safe? - January 16th, 2010 [January 16th, 2010]