2 posts tagged “partnering with your doctor”

Life-changing second opinion stories: “I decided to get a second and third opinion…”

Posted January 3rd, 2018 by

Stories showing the importance of second opinions have been popping up in the media and on PatientsLikeMe. Check out the recent news headlines, hear a remarkable story of a PatientsLikeMe member who received a life-saving lung transplant after getting a second (and third) opinion, and share your own experience of piecing together your health puzzle.

Extraordinary second opinion stories

The Washington Post recently featured two powerful pieces related to second opinions — one about a man who got a second opinion at his mother’s urging (and received life-saving treatment for metastatic testicular cancer), and another about a woman who did not seek one and underwent unnecessary major surgery (removing her breasts and uterus). “I am damaged for the rest of my life,” the woman said.

PatientsLikeMe member Theresa (Pipersun) recently shared her “whirlwind experience” and remarkable second opinion story in the forum.

After two bouts of severe pneumonia earlier in 2017, a CT scan in June confirmed Theresa had a serious lung condition, idiopathic pulmonary fibrosis (IPF). While the diagnosis was correct, her doctors did not believe her condition was as advanced as she suspected.

“My pulmonologist was terrible,” she says. “He would not prescribe me oxygen, and would not sign a referral for pulmonary rehabilitation, stating it would do me no good, that if I had COPD he would. We talked about my life expectancy and lung transplant. He thought I had about 5 years, and I stated then how come I feel I am going to die in 3-5 months. He also made a derogatory statement, [he sat on the lung transplant review committee for the Northeast region] he stated ‘why would I put you on the list when there are so many children that need a lung.’ I responded that I didn’t think I was in the same [transplant candidate] group. But his attitude kick started my drive to find out as much as I could about organ donation regions, stats, etc.”

When her doctor denied an oxygen prescription, fellow members with IPF urged her to seek another opinion.

“I decided to get a second and third opinion,” she says. Consultations with two specialist groups in August – and her rapidly declining condition (which landed her on life support in September) – resulted in her receiving a lung transplant. “They admitted me to ICU and that’s the last I remember for 9 days,” she says. “I became conscious with a new set of lungs on Sept. 28.”

“I had to advocate for myself all the way and believe in what my body was telling me versus specialists in Oregon,” she says. “Even my GP thought I was in the early stages. If I would have listened to them, I would not be here/alive today. I am 57 years old, they said I have a new birthday, September 28.”

Pointers on second opinions

Steven Petrow, the writer who shared his second opinion success story in The Washington Post, offered some tidbits and tips for other patients in his Op/Ed piece:

  • 10 to 20 percent of all medical cases nationwide are misdiagnosed, affecting at least 12 million people, according to a Mayo Clinic researcher who has studied misdiagnoses
  • Don’t be talked out of a second opinion — doctors should support and encourage them (as PatientsLikeMe members have noted, “A good doctor will not be offended”)
  • “Be upfront and respectful with your doctor” — this can help ease the process of sharing records, and help you maintain a relationship if you stick with your original physician
  • Everyone has a right to a second opinion, and they’re usually covered by private insurance, Medicare or Medicaid (but check with your own insurance)
  • “Not all second opinions are created equal” — find a doctor who’s board-certified in their specialty and (ideally) affiliated with an academic medical center with a strong reputation (avoid only relying on recommendations from friends or a referral from your doctor, because there could be some bias)
  • Consider all your options, including online second opinion resources(Petrow mentions examples like Dana-Farber’s online oncology programCleveland Clinic’s MyConsult and SecondOpinionExpert)

More members chat about second opinions

On PatientsLikeMe, there are more than 4,000 mentions of second opinions in the forums (trend-spotting: you often encourage each other to seek them, as member Peggy recommended in her blog post about self-advocacy). Here are some of the communities that have talked the most about second opinions in the forums — join PatientsLikeMe to see what folks say:

  • Multiple sclerosis
  • Fibromyalgia
  • Mental health
  • Parkinson’s disease
  • ALS
  • Epilepsy
  • Cancer and lung cancer

What’s your second opinion story? Share it in the comments.

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Patients as Partners: Member Jeff on teaming up with your doctors

Posted April 28th, 2016 by

This year, the Team of Advisors has been thinking about partnerships in healthcare. They introduced the Partnership Principles, outlining ways to make the most of your relationships with the many people you encounter in your health journey — medical students, clinical trial coordinators, and “normals.” Now, they’re each sharing personal stories about these principles in action to kick off conversations about partnering. First up, during Parkinson’s Awareness Month, Jeff (Deak80) shares his experiences finding the right doctor and looking for “red flags,” communicating effectively, and sharing responsibility in his care.

 

As part of the Team of Advisors, we’ve been tasked to think about how we partner in our healthcare. Here are some examples of where, and more importantly how, I put the partnership principles to use. Remember that using the partnership principles is not a quick fix nor for one-time use. It’s important to establish a strong base through consistency of use and recognition that an effective partnership is based on a mutual respect and building a long-term relationship.

Know your needs in the partnership

Starting last December, I had the opportunity to put the partnership principles to use. Changes in my Medicare Part D prescription provider were driving me to change my Primary Care Provider (PCP). My previous year Part D insurer eliminated one of my Parkinson’s drugs from their formulary list. When I reviewed my options for prescription coverage (i.e., all my medications on an insurer’s formulary list), I had only 1 Part C HMO plan which met the requirements. (Those familiar with the basic construct of Medicare know that with a Part D plan you pair Medicare Supplemental Insurance to get complete coverage, or you use a Part C Advantage plan which covers both Health and Prescriptions).

Fortunately, my Parkinson’s specialist was covered under this HMO, but my PCP was not, so I began the search. I used the insurance company’s “Search for a Doctor” capability against a set of basic requirements:

  • Within 10 miles of my house
  • Has an internet healthcare rating of 3.5 or greater. (There are multiple rating services, I use this as a guide, not a rule.)
  • If they are part of a doctors group that has provided care to me in the past, was it a good or negative experience?

Using this basic approach, I was able to identify two doctors at the same practice as a potential PCP. I called, and the one with the first available appointment became my PCP. Notice that the selection process of my PCP was short and not overly taxing. One reason for the expedited process is that during the first few appointments I am watching for “red flags” or areas of concern. If I encounter too many “red flags” I move on to another doctor. As indicated below, I did encounter too many “red flags,” and quickly selected another PCP. The only change I made to the new search is I expanded the range to 15 miles. I have met with my new PCP and I can tell that this PCP will be a much better match to the partnership principles than the first. 

“As patients we may have to put more effort into the partnership to make it work…I am OK with this since I have the most to gain in the partnership.”

Establishing an effective patient-doctor partnership requires effective and efficient communications and recognition that a 50/50 partnership never exists. What this means is, as patients, we may have to put more effort into the partnership to make it work (>50%). Personally, I am OK with this since I have the most to gain in the partnership.

I look for effective and efficient communications within the doctor’s practice in two areas:

1. Does the office administration team communicate effectively with each other?

I have left more doctors due to poor office support and the office’s inability to manage a schedule than doctor/medical issues. The office administration is a key member of the doctor’s team. They are responsible for a lot of the information getting into your medical record as well as managing your access to the doctor. Some of the red flags to look for with the office administration are:

  • Is some erroneous information sneaking into your medical file? A recent experience of mine in this area is that my birth date was entered incorrectly. Although I appreciated being 10 years younger, a lot of medical decisions, tests, etc., are driven by your age. I called three times over four weeks and they still had not corrected when I changed PCPs.
  • Does the office run on time? I don’t mean necessarily to the minute, but are they even close? After relocating from Seattle to Boston, I selected my Parkinson’s specialist based on the recommendations of my doctors in Seattle. Although the doctor was medically very good, the office frequently ran over two hours late in the afternoon. These delays caused me significant stress. I was also working full-time at this point so the delays were also impacting work. Needless to say I changed specialists to one that was medically very good and the office runs almost always within 15 minutes of being on time.

2. Does the doctor’s office have the tools to communicate effectively with the patient?

You will hear phrases such as “patient portal” or “electronic medical record” (EMR) or “electronic health record” (EHR). In either case, these are referring to the system that a doctor typically uses to communicate with the patient. Usage varies between doctors. The PCP I now have is an active user of the EHR system. Even if your doctor is not an active EHR user, make sure you are. Access to this system provides you direct access to medical records (test results, surgeries performed, etc.).

Communicate effectively

Typically, I send an email about a week before my next visit to my Parkinson’s specialist. This approach provides me the opportunity to:

  • Document how I have been doing since the last session
  • Outline the objectives for this session
  • List the questions I have for this session
  • Allow the doctor to engage other resources if needed

More importantly it helps me organize, prioritize. Additionally, there is a much better chance of me remembering to cover everything in this email versus remembering onsite. Although my memory is still pretty good, relying only on your memory is setting yourself up for a disappointing meeting.

Share responsibility

Take personal ownership of my health. I am always trying to improve my situation. I attempt to eat right, get enough sleep and exercise regularly. I also put the effort into an effective patient/doctor partnership. As I mentioned above the patient/doctor partnership is not 50/50. I am not sure what the ratio is, but since the patient has the most to gain, logically they have to put the most into the partnership.

Finally, I found there’s a lack of real partnership in a lot of medical decisions. This lack of partnership is not just limited to the patient/doctor relationship. If you have multiple specialists involved, you may have to get them to meet together to discuss your case. Until you do, I have found that doctors follow a very linear process, and that joint decision making often does not occur.

You are your best patient advocate, so step up and take charge.

 

 

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