Difference between revisions of "Patient Stories"

Revision as of 15:51, 6 June 2018

To truly understand managing health, we need to hear first hand from patients to relate, emphathize and learn how to improve.

Addressing Non-Medical Determinants

• A Physician tells a story of how social determinants drive patient outcomes in two men in their late 30s that live across the street from one another, both in good health with no family history of major illness (8/7/16)
• 39-year-old woman that is nearly blind and unable to walk more than a step or two, struggles to raise three sons while dealing with a daunting array of health conditions from diabetes to pain from bulging spinal disks. A non medical health worker offers to help. (3/9/16)
• Mr. Jones had congestive heart failure, COPD, and a barrage of other chronic health problems. A visit to his home provided insight into why he was going to the ER each week (5/21/15)
• 78-year-old businessman with physical pain needed to address emotional needs first (5/17/14)

Aging In Place

• 87-year-old Mary staying in a family home can become a strain for both the elderly and their adult children like her daughter Linda. (10/2/16)

Alcoholism

• A man, sober for one year, struggles with his life and love for alcohol (8/24/16)

Behavior Impact on Health

• A physician frustrated by his limits describes the tale of two patients. A 61-year-old man with elevated blood sugar. 52-year-old man with an elevated red blood count caused by smoking, sleep apnea from obesity, early lung disease and two cardiac stents. The 61-year old lost weight and lowered his blod sugar. The 52-year-old didn't make any lifestyle changes and health deteriorated. (7/15/16)

Breaking The Stigma

• Dr. Adam Hill is a husband, father, and pediatric palliative care physician. He decribes how he fought through the stigma of depression, alcoholism and suicidal through treamenta and recovery. (3/23/17)

Caregivers

• Michael Sloss and his brother care for both parents, ages 83 and 85, whose personalities have been transformed by the decline in their mental and physical health. The brothers wrestle with their parents’ memory loss, anger and delusions. (6/2/17)
• Bonnie Friedman describes her frustration coordinating her husband's care over many hospitalizations for serious, sometimes life-threatening, illnesses. (1/20/17)
• How the family of 87-year old Ruth Perez's with dementia learned how to take care of their mom (12/12/16)
• Six short videos, each just 3 minutes or less, show what caregiving looks like. (1/2/16)
• A son must decide between caring for his elderly mother or being able to retire one day (11/22/15)
• When a family caregiver becomes injured, she learns the difficulties—and costs—of caring for herself and her chronically ill husband at the same time. (9/2014)

Community Health Worker

• 46-year-old Tanya never went to the doctors until she had no choice. She was diagnosed with hypertension, cirrhosis, asthma, and high blood pressure. Her doctor referred her to community health worker that has really helped Tanya (4/3/17)

Depression and Suicide

• I lost two great personal and professional friends to depression and, ultimately, suicide — Raul Valdes-Fauli and Ervin Gonzalez. Both seemed to have the world in the palms of their hands: loving families, financial security, and professional success as a banker and lawyer, respectively. (6/28/17)

Disability from Stroke

• 32-year-old Jamie Hancock, mother of children ages 1 and 3 had to adjust to a new life (8/24/16)

End of Life

• Active 68-year-old man had to suffer through several months of pain before dying. His physician daughter became a proponent for dignity in dying (9/16/16)
• A hospital CEO learns that the standard of care isn't always appropriate when her 94 mother sustained a fall (5/2015)
• A patient dying of cancer was denied home treatment that would have improved her quality of life over her last few days and saved tens of thousands of dollars. (2/11/13)
• A frail, 94-year old women with with advanced Alzheimer’s has hip fracture surgery during her dying days due to poor communications (3/10/13)

Fragmented Healthcare System
Lack of a coordinated, patient centered approach

• Katelyn Anderson is 28 years-old with communications degree was diagnosed with a disease while in graduate school. The fragmented, disjointed healthcare system makes it nearly impossible to manage her health and treatments. (10/29/16)

Geriatricians

• 88-year-old patient with metastasized prostate cancer on 26 medications was troubled by profound fatigue, which dissipated after his Geriatrician took him off all but one medication. (2/23/17)

Health Insurance Issues

• Corey Michael is a physician that was diagnosed with sleep apnea. He finds it may be easier to buy the continuous positive airway pressure (CPAP) device without insurance than going through the extra steps required by his health plan (1/25/17)
• A young professional woman a few years out of graduate school in late twenties with a good job and health insurance unable to maintain her health due to cost and coverage. (6/29/16)
• A man suffers for a week in agony with kidney stones because of insurance access issues to physicians and services (12/11/15)
• Medicare would only pay for an 84-year-old man's infusion therapy at a nursing home ($15,000) rather than at his home ($1,200). (2/23/14)
• A patient suffering from an infected artificial shoulder couldn't afford intravenous antibiotics three times a day for six weeks in home. Medicare spent an unnecessary $30,000 on hospitalization and care rather than reimbursing for home care. (2/23/13)

Health Care Professionals As Patients

• A doctor with a bad knee. "It took me three months of physical torture before I diagnosed my problem: I was suffering from one-size-fits-all medicine." (12/4/16)
• Young Oncology nurse turned cancer patient. "Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it." (11/14/16)

Health Literacy

• 65-year-old publicly-insured male doesn't understand procedure prep instructions causing him to reschedule and begin the process again. (8/21/16)

High-Deductible Health Plans

• With A High Deductible, Even A Doctor Can Shortchange His Health (2/7/17)

High-Need, High-Cost Patients

• Forty-year-old Jeremie Seals was assigned a care manager and a regular physician that helped reduced his 15 ER visits and 11 hospitals stays to 4 ER visits and 4 hospitals stays the following year. (7/10/13)
• Virginia Hunt's story illustrates the effectiveness and ineffectiveness of our healthcare system that addresses conditions and often lacks capability to treat the overall patient. (3/3/13)
• Rebecca Bryson has 10 different medical conditions and depends on 13 health care providers. Her life improved when a program funded a Clinical Care Specialist and the creation of a Shared Care Plan. (2006)

Incrementalism in Managing Health

• Bill Haynes was fifty-seven years old, and he suffered from severe migraines for almost four decades. How an incremental approach improved his life from physician author Atul Gawande. (1/23/17)

Living Conditions

• How can patients get better if they live in homes tailor-made for disease? (9/17/16)

Living With Cancer

• Mary had recurrent ovarian cancer struggled to come to terms with living with cancer that treatments were keeping in check rather than focusing on beating it. (6/8/17)

Living With Chronic Pain

• 49-year-old women engineer for an aeronautics lab developed chronic pancreatitis from a rare birth defect and was treated as drug seeking addict when she needed medication to manage her pain (3/15/17)
• Toni Bernhard was a law professor. She shared what it is like living one day with chronic pain (12/17/16)
• Angelika Byczkowski was a hard working, high achiever in her 40's had to redefine what is important in her 50's when overcome by pain and diagnosed with Ehlers-Danlos syndrome (9/4/16)
• The frustrations of 70 year old woman going from a vibrant lifestyle to be consumed by pain with no solutions other than suffering and addicting opioids. (7/3/16)

Medical Decisions - Quality of Life vs. Aggressive Interventions

• 70-year-old male with deteriorating congestive heart failure. Costly, aggressive route, could have caused more harm than good, comprising quality of life. (9/20/14)
• Vibrant 68-year-old woman from Haiti. She was always impeccably dressed, loved to talk, and had an incredibly infectious laugh. While the condition was cured, she was not. (6/6/16)

Medical Debt

• Widowed Early, A Cancer Doctor Writes About The Harm Of Medical Debt (8/10/17)

Loneliness

• Emil Girardi is 83-year-old was active until he didn't want to leave his home after a stroke. (1/1/17)

Mental Health Treatment

• 16-year-old Joe's mom Amy, struggles to get services for her son (5/31/16)
• Pam and Doug struggle to find care for their young daughter Amanda who is eventually diagnosed with bipolar. Finding available psychiatrist, psychiatric hospital beds and programs were difficult. (3/14/16).

Opioid Addiction

• Taylor Wilson’s parents fought for 41 days to get their daughter treatment. They couldn’t stop another overdose (3/16/17)

Paying For High Cost Treatments

• Scott Steiner is 46-year-old father of six kids that had to struggle to afford high cost cancer treatments. (4/9/16)

Paying For Medicine

• After a lifetime of smoking, 67-year-old Juanita Milton needs help breathing. She’s tethered to an oxygen tank 24/7 and uses two drug inhalers a day, including Spiriva, which she called “the really expensive one.” (6/5/17)

Patient Dialog

• 60 year old Sally should not have had to go to the emergency department for severe gastrointestinal pain if she and her physician communicated better. (3/25/17)

Patient Goals

• Jack was as a leader in trademark licensing for UCLA. He had been playing golf and running a business prior to admission. His doctor was determined to focus on Jack's quality of life. (10/26/16)
• Patients become people through their social history (8/26/15)
• A doctor discovers an important question patients should be asked. “What are their goals?” (3/9/15)

Primary Care Physicians - Managing Health

• Patient went to Urgent Care rather than Primary Care Physician that knows her, costing almost $10,000 that was unnecessary (3/14/14)

Social Concerns

• Toni Bernhard was a law professor. Now she wonders what to share and how to act on how she feels. (8/8/16)

Shared Decision Making

• Martha recently retired after 40 years as a business consultant. She has received care from many providers. Her primary care physicians discovers she is on 5 blood pressure medications. (10/24/16)
• It is a good thing the patient did not accept evidence-based recommendations after ovarian cancer treatments. It may have saved her life. (10/5/16)
• Joe is a healthy 85-year-old on just one medicine. His doctors office ordered an unnecessary medicine without a discussion. (3/25/16)

Stress Of Monitoring After Cancer Treatments

• 40 some year old woman with metastatic breast cancer requires scan every three months. She describes the stress the day before, the scan experience and the days of waiting for the results. (12/8/16)

Support System Beyond Spouse and Family

• It was assumed a healthy 64 year old single woman living alone would be unable to handle the treatment most likely to keep her alive. (11/21/16)

Videos - In Their Own Words

• Annie is living with major chronic conditions, including Type 2 Diabetes, COPD, congestive heart failure, and high blood pressure. She often feels limited in what she can yet avoids asking for help for fear of burdening her family. (6/15/17)
• Joshua has cerebral palsy and shares a number of the challenges faced by other high-need patients who are under age 65 and living with a disability. Joshua relies on aides for assistance with daily living, yet his parents must miss work to help when the aide is out sick. (6/15/17)
• A frail elder, Jeanne is over age 65 and has functional limitations that cause major difficulty performing tasks such as preparing meals or getting across the room. Jeanne reflects on her loss of control over her own life because of her health conditions (6/15/17)

Widespread Hype Gives False Hope To Many Cancer Patients

• For Michael Uvanni, hope gave way to crushing disappointment when his brother Jim’s health declined and he died from metastatic melanoma in 2014. (4/27/17)