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Thursday, July 28, 2011

Radio Program on Getting the Right Care Team

"Caregivers Stories: Getting the Right Care Team" will be broadcast live on Friday, July 29, 1 - 2 pm EST. During Ms. Hari Khalsa's radio show, Ken Farbstein will use stories from his new book to answer your questions and offer:

1. Specific tips for staying safe during medical crises;
2. A general mindset of being an empowered patient; and
3. Ways to partner with your doctors and nurses.

To hear the show on your computer via Internet radio, go to: http://www.blogtalkradio.com/healthcare-whisperer-/2011/07/29/caregivers-storiesfinding-the-right-care-team.

To offer your questions and comments during the show, call: (805) 830-8363.

Ken Farbstein, MPP, leads Patient AdvoCare in Needham, Massachusetts. He has served two elected terms as President of Health Care for All's Consumer Health Quality Council. His new book is Getting Your Best Health Care: Real-World Stories for Patient Empowerment, published by the Professional Patient Advocate Institute. Ken guided his multi-hospital system clients, winning IHI's Premier Award for Hospital Medication Safety.

Monday, July 25, 2011

Patient Safety Day in our Brave New World: Medical radiation

In a scene in Aldous Huxley's classic, Brave New World, a technician becomes distracted by a visitor, causing her to fail to inject a vaccine, later setting up someone's death from a rare tropical disease. In that world, technology is wondrously powerful, though errors continue to occur.

One of our most wondrous technologies is medical radiation. Radiation has long been used to create images of body structures, tumors, etc. The use of radiation as a treatment in itself, via implanted radioactive seeds, IMRT, stereotactic or fixed beam, proton particles, etc., is much newer. These treatments are complex, powerful, and poorly understood, so that errors are difficult to prevent and detect. Medical radiation may be the epitome of much of medical care, whose drugs and other procedures are also complex, powerful, and poorly understood. That makes it an apt topic for Patient Safety Day.

That also makes it error-prone. The ECRI Institute put radiotherapy overdoses at the top of its list of the top ten technology health hazards. Such overdoses had caused the death of Scott Jerome-Parks, Alexandra Jn-Charles, and perhaps others we don't know about. Today, Dr. William Hendee, one of the most eminent medical physicists, presented a talk on the safety of medical radiation at a meeting of the Massachusetts Coalition for the Prevention of Medical Errors. He discussed both the use of medical radiation as a treatment itself, and in the use of diagnostic imaging (in CT scans, X-rays, etc).

Dr. Hendee's advice for people considering medical radiation treatment:
Ask a lot of questions of your radiation oncologist: Is this the best way to treat my condition? What are the alternatives? Once you've chosen, you should ask questions about the facility: Is it accredited by the American College of Radiology (ACR) and the American Society for Radiation Oncology (ASTRO)? What level of audits are done? Are the medical physicist and radiation therapist certified, accredited by the American Board of Radiation Oncology, and the American Society of Radiologic Technologists (ASRT)?

Friday, July 15, 2011

It was fine: Sleep-deprived hospital doctors

Going into premature labor eight weeks early, my wife was admitted to a Harvard teaching hospital, where doctors delayed her childbirth for a week. They gave her beta dimethasone, a drug to speed the maturation of the lungs of our unborn baby. Two days later came one of the happiest days of my life, when we learned that a lab test revealed the drug had worked: my son’s lungs would be fine, and he wouldn’t need a ventilator.

Residents had affixed a band and device around my wife’s belly to measure and graph the fetal heartbeat and the contractions of her uterus. Noticing the graph showed regular peaks, I asked a young resident what that meant. She reassured me that it was fine, and I didn’t pursue it.

Then when hearing in the evening that my wife was experiencing abdominal pain, the sleep-deprived residents confidently attributed them to gas pains! Finally the next morning, a pelvic exam revealed her cervix was nearly fully dilated, ready for delivery. Exhaustion had ruined their judgment, so my wife had had to suffer labor pains for 12 hours without any pain medication.

The doctors at the Harvard teaching hospital had missed the fact that my wife was in labor! They’d ignored their device, ignored my question about the rhythmic spikes in uterine contractions, and misdiagnosed my wife’s pain.

The newest safety rules limit hospital residents to working no more than 16 hours at a time. You read right. See the OpEd column in the June 24 issue of the Los Angeles Times by Dr. Lucian Leape and Helen Haskell.

Advice: If your young doctor in the hospital looks sleepy, ask your patient advocate what to do.

Read more about staying safe in the hospital from my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

Friday, July 8, 2011

There's so much of this going around: Co-production of a diagnosis

Mrs. R: I'm here because I just feel rotten.

Provider: What kind of symptoms are you having?

Mrs. R: Really high fevers. Last night it was 102. I just ache all over. And I've got this cough...It started the day before yesterday, all of a sudden in the afternoon, something just hit me like a ton of bricks.

Provider: It sounds like you have influenza. There's already a lot of this going around.

Mrs. R: I don't see how this could just be the flu. I've never had anything like this, and I can't ever remember feeling so sick.

Provider: What you have is more than just the run of the mill flu....Have you been under a lot of stress lately?

Mrs. R: Things have been tougher at home lately....My husband and I aren't getting along so well...we fight about money and he parties too much.

Provider: Let's get back to the medical reasons for the visit, but if you ever want to talk about the personal issues, I'm available.

Mrs. R: I'm just worried that this virus or whatever will keep hanging on.

Provider: There's so much of this going around. Everybody's got it this week.

In Provider-Patient Partnerships, Helen Meldrum and her co-author, Dr. Mary Hardy, discuss the case study summarized here in a section entitled, "What is it you're not telling me?" in their chapter about sensitive issues. In this case, the provider didn't learn about Mrs. R's husband's IV drug use, and so couldn't detect her possible exposure to HIV from her husband. Mrs. R had spoken quite indirectly, as many patients do, and the provider didn't understand what she hadn't told him.

Using many rich scenarios like this one, Helen Meldrum's book discusses how providers can improve their communication with patients. The book respects the messy complexity of patients' medical issues, and the frequently indirect communication by patients about their problems. The book is a practical and insightful guide for providers. Its specific prescriptions for seeing the truth among patients' murky comments are much needed.

Ken's advice for patients with sensitive issues to discuss: Rehearse what you'll say to the doctor ahead of time to clarify your concerns.

For more ways to improve communication of providers and patients, read the chapter on "Interacting with Your Doctor" in my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

Tuesday, July 5, 2011

A lot of hurdles to jump: Do Not Resuscitate Orders

A story by healthcare blogger Patricia Walling:

A man I knew wrote a Do Not Resuscitate ["DNR"] order in his 80s, before a hip replacement. That's a form you can fill out with a physician's signature to ensure that you are not resuscitated against your will after your heart or breathing stops. In the order, he included a lot of hurdles to jump before the plug could be pulled.

Years later, when his physical and mental health began to deteriorate rapidly in his early 90s, things became chaotic and stressful both for him and his children. At that point, he was dying of prostate cancer and just wanted them to let him die. Unfortunately, he had neglected the critical step of reviewing the DNR order every five years. The DNR order he had written in his 80s did not address many of the issues that became critically important in the final months of his life.

Recently a movement has begun to rename these forms "AND" (Allowing Natural Death) to emphasize through medical coding that the doctor is allowing death, rather than withholding care somehow. Having a DNR can be handy if you have been suffering from a disease for a long time, want to avoid the violence of CPR at death (which can often break ribs and other bones, especially in the elderly), or just want to be allowed to die at home rather than in a hospital. Numerous studies have found that end of life care tends to be prolonged needlessly, inflicting pain on the patient and imposing financial and emotional burdens on both patient and family, and a DNR/AND can help to alleviate those issues.

Patricia Walling's advice: Make sure to review it in detail with your doctor, appoint someone as a health care proxy, and don't forget that sometimes your wishes may change.

Friday, July 1, 2011

More than we can imagine: Massachusetts healthcare payment reform

This was the testimony I delivered on June 30 to the hearings on health Care Provider and Payer Cost Trends, conducted by the Massachusetts Division of Health Care Finance and Policy:

I'm Ken Farbstein, a patient advocate with a private practice, and an author of a new book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment, published by the Professional Patient Advocate Institute.

Thank you, Commissioner, for the privilege of learning at these hearings, and being able to testify.

Rev. Hamilton told us that God brings us more than we can imagine. Let's imagine what payment reform will look like in practice. On Tuesday, Amy Slemmer of Health Care for All stressed the importance of transparency, as did yesterday afternoon's panel of speakers. What does that look like? In Pennsylvania, where they've had mandatory reporting of serious reportable events, that reporting has now, they can confidently say, decreased wrong site surgery, according to Mike Cohen, the head of the Institute for Safe Medication Practice. That's pretty good for patients' quality of care. And it reduces costs, because there's no need for physical therapy, prostheses follow-up visits, and so on, to try to make up for the mistake, plus the cost of doing the operation right the second time around.

What else does transparency look like? Harold Miller emphasized yesterday, as did Ray Campbell and others today, about how critical it is to get clear information on price and quality. A one-pager handed to the patient well before any surgery, stating the likelihood that a repeat operation will be needed, the cost to them, the number of similar operations that surgeon has done before, and the alternatives to surgery, would provide vital information. When we brought my dog in for a surgical decision about a lump in one of his front elbows, the veterinarian gave us very clear information about the risks, costs, and alternatives. Her information was much better than the explanations I had received about my own two surgical decisions for my eye, and for my sinuses.

Fully informed, shared decision making will get many people to choose less costly alternatives to surgery, as I did twice. The Cochrane Collaborative documented the cost savings in its recent systematic review of 58 articles in the medical literature.

Impartial patient advocates can discuss end of life decisions that are based purely on preserving dignity and the quality of life. Family members will often prefer hospice care, which is more humane and less costly than "death by ICU." My father had a long gallant struggle with Parkinson's Disease. At the end, he, and we, chose hospice care. That was definitely the right decision for his dignity and quality of his remaining life. It also saved money for the taxpayers.

Yesterday, Harold Miller told us there are 3 ways to reduce costs: prevention, preventing hospitalization, and more efficient hospital care. What do they LOOK like?

Prevention, you know about. Harold Miller also mentioned avoiding hospitalizations. Last night I went to a medical home meeting. There were pediatricians, Nurse Practitioner and another nurse educator, the office manager, 3 parents of kids in the medical practice, and me, with pepperoni pizza, Diet Coke, and champagne - to celebrate a journal article to be published on the successes of the medical home. They showed a homemade video teaching parents about a new alternative to stitches when their kid gets a deep cut. They teased the nurse practitioner who was the star of the video. Their laughter, and their warmth, is a key ingredient of the medical home. That's what home looks like. The video is about DermaBond; imagine a glue stick the doctor will use to seal a deep cut, instead of stitches. Those cuts can be treated in the doctor's office instead of an E.R. visit. No stitches need to be removed in a later visit. These, and many other changes, have enabled this medical home to reduce the E.R. use among their kids over the last four years, by one-third. That's what a medical home looks like.

Third, Harold Miller said costs are reduced with more efficient hospital care. My mother complained of radiating neck pain, so I brought her to our small community hospital's E.R. She was given a telemedicine consult with a doctor at BIDMC in Boston - a 2-way TV hookup that impressed her greatly, and ruled out a stroke promptly. That's what efficient hospital care looks like.

A patient advocate who is fully independent and trusted can help patients and their families make the difficult decisions about how to get their best health care. These images are what payment reform should look like.