Author: Laurie Reed

A Medical Diagnosis – The Importance of Getting it Right

Posted on November 4, 2021 by - Diagnosis

A Medical Diagnosis - The Important of Getting it Right

I am waiting for the dermatologist, paper gown open to the back. I made this appointment in search of a medical diagnosis due to a bruise, or discoloration, under my big toe on my left foot.

Based on my experience, some physicians keep patients waiting for long periods of time in the exam room. I brought a book to read. This particular dermatologist is one that usually runs on time; on this visit the wait is 30 minutes.

In the exam room, the table folds into more of a chair shape. So I sit, book in hand, and initially feel relatively comfortable. But then I begin to notice the cold. I’ve been asked to remove my clothes, and the paper gown doesn’t offer much in terms of warmth.

In Search of a Medical Diagnosis

I’ve been to see this dermatologist only once previously. My husband is a regular thanks to basal cell carcinoma. Over the years, this dermatologist has dug out small hunks of my husband’s skin for lab testing. Other suspicious spots were zapped with liquid nitrogen, all in an effort to keep his cancer in check.

My first visit was nearly two years ago. Since I am fair-skinned, and given my husband’s experience, I wanted to get a baseline reading for any potential skin damage. Fortunately, I got a thumbs up. Skin all clear, with a parting, ‘See you next year.’

I didn’t return in a year but return only when prompted by a specific concern. The bruise under my big toe seems odd to me. When it appeared, I remembered this happening before, the sudden appearance of what seems to be a bruise under the toenail on my left foot. The previous ‘bruise’ eventually disappeared without incident.

I find the bruise a bit unnerving though. I don’t remember injuring my foot or dropping a heavy object on my toe. And I’m not a runner so I haven’t hurt my toe by repetitive pounding against the unforgiving end of a running shoe. Furthermore, there is no pain, as might be expected with a bruise or an injury to the toe.

A quick search on the Internet reveals that in some cases, although rare, a bruised toe may signify a subungual melanoma, a type of skin cancer under the nail. Given that I have no explanation for the bruised looking toe, and that it has been over a year since my last visit to the dermatologist, I make an appointment.

I’m anxious for some professional expertise, hoping the medical diagnosis is right.

Why Worry About a Bruise?

As a patient advocate, I am aware of concerns in healthcare regarding the over-use of medical resources. Do I really believe my bruised toenail is melanoma? I honestly don’t know. I could take a wait and see approach. I’m bothered though that this discolorization under my big toe has occurred before. Just because a symptom goes away doesn’t mean there isn’t a problem.

Perhaps this is an indication of something more serious. When something is wrong in the body, when there is an underlying illness, there are often signs. And sometimes these indicators are brushed off either by the patient, or the physician, or both. As a result, there is a failure to make a link to the real issue, to make the right diagnosis.

This failure to make the critical connections is what happened with my sister. When she reported to her physician of being out of breath during her regular walks, it was attributed to getting older. When my sister developed a hacking cough, she was given antibiotics for an infection, and when my sister began to have mini-strokes, she was treated for cardiovascular issues.

There was a failure to make the link to the underlying problem.

Five days before she died, my sister was told she had lung cancer.

For my sister, the delays in a medical diagnosis were too costly.

When Seeking a Medical Diagnosis, Be Persistent

I do not want to be surprised by serious illness, or even death. Although I know I may have little control over such outcomes, I can listen to my body, and to question when things seem amiss. There are always clues. So here I am in the doctor’s office with my toe.

The dermatologist tells me it looks like a bruise. She’s quite certain it is a bruise, but she asks me to come back in two months. She’s covering her bases, which is fair.

I am covering my bases as well. It is my body. It is okay to ask, and to ask again. I accept her diagnosis, but I make the appointment.

Food as Medicine: A Recipe to Share

Posted on November 4, 2021 by - Support

Food as Medicine: A Recipe to Share

Soup. Glorious Soup. Warm concoctions of vegetables, broth, and spices feel nurturing and satisfying to both body and soul. During times of illness and recovery, certain food, like soup, can be good medicine. Nourishing and sustaining us, food is powerful medicine, as we struggle to heal and regain our strength.

Food as Medicine

The concept of “food as medicine”¹ is growing among a small number of insurers in an effort to control healthcare costs. Such efforts are proving successful as highlighted in recent studies.

  • In Health Affairs², when medically tailored meals are provided there are fewer emergency department visits, fewer inpatient admissions, and lower medical spending in comparison to a control group.
  • Another study in the American Journal of Managed Care³ reveals similar benefits. Patients receiving tailored meals show a drop in hospital readmission rates and dramatic cost savings compared with patients without the specially tailored meals.

Unfortunately, such programs are currently limited to specific geographic areas. Expansion of these programs will require a shift in the medical model of how we pay for health care and how it is provided. Given success rates to date, it would be encouraging to see such efforts expanded to other geographic areas and broadly supported by insurance companies.

Food as a Gift

Food is also a gift. Sometimes, when someone you know is not feeling well or may even be facing a serious health challenge, we just don’t know what to do. Foods, such as soup, are often welcomed because planning and preparing meals can be difficult during times of illness. And quite simply, food is good medicine.

As discussed in another post, soup can be a great way to show you care. However, at the tail end of summer, a hot soup on a blistering, sultry day may not be a great choice. Fortunately, the end of summer also brings a plentiful supply of fresh tomatoes. And fresh tomatoes are a great opportunity to make gazpacho. A soup from Southern Spain, gazpacho is particularly refreshing since it is served chilled.

Gazpacho

Julia Moskin
By
Print Recipe
Cook Time 20 minutes
Resting Time 10 minutes
Servings 12

Ingredients
  

  • 2 lbs Ripe Red Tomatoes Cored and roughly cut into chunks
  • 1 Cubanelle Pepper Seeded and cut into chunks
  • 1 Cucumber About 8 inches long, peeled and roughly cut into chunks
  • 1 Mild Onion (white or red) Small, peeled and roughly cut into chunks
  • 1 Garlic Clove
  • 2 tsps Sherry Vinegar More to taste
  • Salt
  • .5 cups Extra-Virgin Olive Oil More to taste, plus more for drizzling

Instructions
 

  • Combine tomatoes, pepper, cucumber, onion and garlic in a blender or, if using a hand blender, in a deep bowl. (If necessary, work in batches.) Blend at high speed until very smooth, at least 2 minutes, pausing occasionally to scrape down the sides with a rubber spatula.
  • With the motor running, add the vinegar and 2 teaspoons salt. Slowly drizzle in the olive oil. The mixture will turn bright orange or dark pink and become smooth and emulsified, like a salad dressing. If it still seems watery, drizzle in more olive oil until texture is creamy.
  • Strain the mixture through a strainer or a food mill, pushing all the liquid through with a spatula or the back of a ladle. Discard the solids. Transfer to a large pitcher (preferably glass) and chill until very cold, at least 6 hours or overnight.
  • Before serving, adjust the seasonings with salt and vinegar. If soup is very thick, stir in a few tablespoons ice water. Serve in glasses, over ice if desired. A few drops of olive oil on top are a nice touch.

Notes

Having prepared gazpacho from this recipe several times throughout the summer, here are few suggestions based on my own experiences:
  • Plan ahead! This soup is best when it is chilled so making it requires some planning. (Six hours according to the recipe.)
  • The cubanelle pepper is a sweet pepper. A good substitute for a cubanelle pepper is an Anaheim pepper which has a little more heat but, is generally mild. The first few times I made this recipe, I used a jalapeno pepper which added too much heat. The best batch of gazpacho I made all summer was when I used an Anaheim pepper. Recently I’ve used Poblano peppers, since they were on hand, which adds more heat than an Anaheim but are not as hot as jalapeno peppers.
  • Instead of the Sherry Vinegar, I’ve used Red Wine Vinegar, which seems to work. Although, if I ever make the recipe with Sherry Vinegar I may never go back, it might be just that good.
  • My version does not contain the full allotment of salt, more like one teaspoon rather than two.
  • The first few times I used this recipe, I held back on the olive oil but I think the soup really needs the full ½ cup.
  • So far, I haven’t had to work in batches. I stuff my blender to the top and watch the magic happen.
  • Straining the mixture through a food mill or a strainer seems like a messy, unnecessary step that only takes out nutrients which I prefer to leave in. I like the small bits in the soup because I think it adds interest.
  • I also serve the soup in bowls rather than in glasses since I’d rather spoon my soup than drink it from a glass.
  • Toppings! This particular recipe does not call for toppings on the gazpacho (other than the mention of olive oil drizzled on top) but I know gazpacho toppings are common and should be considered if you prepare this recipe. Here are some topping suggestions: chopped green pepper, red onion, cucumber, roasted corn, avocado, hard-boiled egg, capers, or yogurt.

Final Words

Sam Sifton, food editor of The New York Times writes, “Today, then, would be a good one to cook for others, … to take note of how in giving to others we make our little worlds stronger and more full of joy.”⁵ So, with the bountiful supply of tomatoes available now at summer’s end, whip up a batch or two of this fabulous soup. Keep one and take one to a friend who may be in need of a little extra care.

¹Galewitz, P. (2018). Rx: Zucchini, Brown Rice, Turkey Soup, Medicaid Plan Offers Food As Medicine. Kaiser Health News. https://dhn.org/newsrx-zucchini-brown-rice-turkey-soup-medicaid-plan-offers-food-as-medine/

²Berkowitz, S.A., Terranova, J., Hill, C., Ajayi, T., Linsky, T., Tishler, L.W. (2018). Meal Delivery Programs Reduce The Use Of Costly Health Care In Dually Eligible Medicare and Medicaid Beneficiaries. Health Affairs, 37(4). https://doi.org/10.1377/hlthaff.2017.0999

³Martin, S.L., Connelly, N., Parsons, C., Blackstone, K. (2018). Simply Delivered Meals: A Tale of Collaboration. American Journal of Managed Care. 24(6):301-304. https://www.ajmc.com/journals/issue/2018/2018-vol24-n6/simply-delivered-meals-a-tale-of-collaboration?p=1

⁴Moskin, J. (2018). Best Gazpacho. New York Times – Cooking. https://cooking.nytimes.com/recipes/1017577-best-gazpacho

⁵Sifton, S., (Sunday, Sept. 16, 2018). New York Times – Cooking. What to Cook This Week.

How Doctors Talk With Patients

Posted on November 4, 2021 by - Communication

How Doctors Talk With Patients

Good communication is usually a two-way street; an exchange of information between two parties of relatively equal status – economically and socially. Patients are inherently vulnerable, however, cast in a role not of their choosing. And much of what patients encounter is often new, difficult, and sometimes frightening. Such vulnerability creates an inherent imbalance of power between physicians and patients. Furthermore, some patients view physicians as authority figures due to their experience, knowledge, and training. As a result, communication between doctors and patients can, at times, be challenging. And yet, how doctors talk with patients can impact medical care and treatment.

What Good Communication Between Doctors and Patients Feels Like When It’s Working …

Jackie spoke highly of her oncologist because he listened, he took the time, and he was willing to take her input.

I really liked his manner and the way he went through things, but most importantly he was willing to listen to me like when I said, ‘hey, I know you’re going to recommend chemotherapy’, and he’s like, ‘well okay let’s look at this.’ And then he’d pull out his laptop and then go online… to that company and, look at the statistics that they have there… then he’d show me. ‘These are the reasons why… you might be able to convince me about this, but let me just show you that these are risks.’… very busy guy, but if I had a question, he was going to sit there and answer it.

Jackie

Additionally, Jackie’s oncologist listened when she wanted to incorporate cooling cap therapy¹ during chemotherapy in an effort to minimize hair loss. Even though the hospital didn’t offer such therapy, the treatment team was willing to support Jackie’s efforts to make this happen.

Ultimately, Jackie chose not to incorporate cooling cap therapy, but having an oncologist willing to listen and help make this happen established trust. As the patient, she felt she had some control in the decision-making and her treatment options. Good communication between doctors and patients begins with the actions a physician takes – for Jackie that meant a willingness to listen.

… and When It’s Not

Jaime, in her search for answers as to what was causing her pain, was not as fortunate as Jackie. She spent a year and a half visiting different doctors trying to get an answer. “Initially, I felt like I truly was the patient, and I didn’t know anything. And they treated me like I was an imposition, and I, it was all in my head; I was a hypochondriac, and you know, high maintenance patient.”

Once Jaime found the physician that properly diagnosed what was causing her pain, stage 4 colorectal cancer, it all changed. Jaime describes the difference:

I actually felt like I was part of a team, which made me feel 100% better; it’s not all in my head… I listened to my body, and I knew something was wrong, and they agreed with me. And I felt a whole lot more comfortable then, working with them, and, and getting their opinions and going through treatment options because I was part of the team.

Jaime

5 Examples of Good Communication Between Doctors and Patients

Finding ways to humanize patient care is essential. And as difficult as it might be at times, patients need to hold doctors accountable Here is a short list of how your doctor should communicate with you:

  • Takes your concerns seriously and is not dismissive
  • Asks questions and listens to your concerns
  • Considers you, the patient, part of the treatment team
  • Consults with you regarding treatment options
  • Treats you as a person first, and a patient secondarily

Many doctors make tremendous efforts to ease communication with patients. But when that doesn’t happen, patients must speak up. And if you feel dismissed as a patient, perhaps it may be time to find another doctor.

* Quotes in this post are from interviews conducted for my book, Navigating Illness: The Patient Experience, a work in progress. Names were changed upon an individual’s request.


¹ (2018) Cold Caps and Scalp Cooling Systems. Breastcancer.org.

The Value of Pre-Surgery Consultations

Posted on November 4, 2021 by - Communication

What is the Value of Pre-Surgery Consultations?

All Caroline wanted was a pre-surgery consultation. The opportunity to meet with the surgeon scheduled to perform her husband’s eye surgery. She was told ‘No.’ The doctor wasn’t available for pre-surgery consultation.

As a patient advocate, I bristled at the perceived arrogance and the rigidity of this physician. What type of surgeon would refuse to meet with the patient, and those responsible for caring for that patient? How does a surgeon get away with this practice?

Reasons for Pre-Surgery Consultation

Scheduling the eye surgery prompted a number of concerns for Caroline:

  • Necessity of the surgery given her husband’s age?
  • Consequences if the surgery was postponed or cancelled?
  • What to anticipate for recovery after surgery?

Contacting the physician’s office with these concerns, Caroline was told the surgeon would not meet with them. The office did propose an option of meeting with a surrogate (a nurse? a patient liaison?) from the office. Surrogates are not the same (neither positive or negative, just not the same) as meeting with the physician.

I first heard about Caroline’s dilemma in my writing critique group. During the past few years, I’ve immersed myself in the experiences of those with serious health challenges. My interviews with patients have translated into writing about these experiences, and I am now compiling these narratives into a book. At one critique meeting, Caroline, a spry woman in her eighties mentioned her husband’s eye surgery.

Pre-Surgery Questions and Concerns

Caroline was frustrated and she shared this frustration with the group. Caroline questioned whether or not to go forward with the appointment. There are many reasons patients may be afraid to speak up with doctors. Her big concern, was the surgery appropriate given the age of her husband and her husband’s other health issues.

Clearly, some event triggered the scheduling of the procedure. However, the couple’s internal medicine doctor felt such surgery was not necessary based on the husband’s health and age. Caroline wanted to discuss these concerns with the eye surgeon. Additionally, she just wanted an opportunity to meet the person performing surgery on her husband.

Caroline’s questions and concerns are legitimate. Research shows that almost 1 in 3 Medicare patients¹ will have surgery in the year before they die. And surgery performed on seniors may not always lead to an improvement in the quality of life². Furthermore, seniors do not recover as quickly from anesthesia. The recovery rate, the body’s ability to mend, is often slower.

When surgery is recommended, conversations about the quality vs. quantity of life are appropriate. Here are some concerns to discuss with a surgeons during a pre-surgery consultation:

  • Clarify the reason for surgery
  • Ask for an explanation of what will happen during surgery
  • Request information on what to expect after surgery:
    • Recovery rates
    • Side effects
    • Long-term prognosis

Every patient has the right to meet with the surgeon and have these questions answered.

Options When A Surgeon Is MIA

When a surgeon refuses a pre-surgery consultation, there are a few options available to caretakers and patients in this situation. Here are some potential paths:

  • Insist on a meeting. Inform the office of your concerns. Underscore a reluctance to move forward with the surgery without such a meeting.
    • Cons: Patients and caretakers are often hesitant to strike a hard line with physicians.
    • Pros: The surgeon may just meet with you. Be sure to bring your list of questions/concerns with you to the meeting and take notes.
  • Meet with the surrogate. Press hard for answers to all your questions and concerns.
    • Be sure to bring a list of all questions/concerns to the meeting
    • Bring someone with you to help navigate the conversation
    • Take notes during the meeting.
    • Review your understanding of the explanations before leaving the meeting.
    • Review your understanding of next steps before leaving the meeting.
  • Cancel the surgery. Find another surgeon if the surgery is necessary AND/OR will improve the quality of life.

Surgeons are highly trained experts in their respective specialties. These skills, however, should not empower arrogance and a disregard for patients’ concerns. [Many physicians have found better ways to communicate with patients.] If the surgeon will not meet with you, perhaps this is not the physician to entrust with your care and well-being.


¹Kwok, A.C. MD, Semel, M.E. MD, Lipsitz, S.R. ScD, Bader, A.M. MD, Barnato, A.E. MD, Gawande, A.A. MD. The Intensity and Variation of Surgical Care at the End of Life: A Retrospective Cohort Study. The Lancet, October 15th, 2011; 378(9800): 1408-1413.

²Nabozny, M.J. MD, Kruser, J.M. MD, Steffens, N.M. MPH, Brasel, K.J. MD, MPh, Campbell, T.C. MD, Gaines, M.E. JD, LLM, Schwarze, M.L., MD, MPP. Constructing High-Stakes Surgical Decisions: It’s Better to Die Trying. Ann Surg. 2016 January; 263(1): 64-70.

Why Patients Use the Internet for Healthcare Information

Posted on November 4, 2021 by - Communication

Why Patients Use the Internet for Healthcare Information

During interviews with physicians, I often hear concerns with patients’ use of the Internet for healthcare information. Some physicians dismissively refer to this practice as ‘Dr. Google.’ These concerns are legitimate.

The Internet is a vast repository of data, facts, and information. And as in any public forum, there is excellence and there are snake oil salesmen.

Why Physicians Have Concerns with the Internet

Physicians may dislike patients’ use of the Internet for healthcare information for a number of reasons, including:

Inability to Discriminate – The quality of the information and the legitimacy of sources on the Internet varies widely. It’s all there — the good, the not so good, and the really horrible. The responsibility to filter for quality information is with the end user. Physicians question whether patients have the skills to identify legitimate, quality information from more questionable or dubious data.

Unfiltered – The sheer volume of information on the Internet can be staggering. There are no filters. Being overwhelmed or distracted by information that is not relevant, timely, or of value is understandable.

Differently Educated – Physicians bring years of training as well as experience to the practice of medicine. People without this expertise may not have the ability to properly evaluate the quality of information found on the Internet.

Self-Diagnosis – Physicians are most concerned with patients’ use of the Internet for self-diagnosis. This practice is problematic. Different diagnoses may express similar symptoms and any delays in treatment can lead to further complications. Additionally, the use of home treatments or remedies could cause even more issues.

Mystery Sources – Healthcare information pulled from the Internet may come from many different sources, all with varying degrees of quality. It is unrealistic to expect physicians to respond fully and knowledgeably to such diverse information during a patient appointment.

Why Patients Use the Internet …. for Clarification

Equally important is to understand why people search the Internet for healthcare information. Such searches are often legitimate and, in some cases, may improve patient care, lower medical costs, and save lives.

Checking Symptoms – People use the Internet to check out symptoms they may be having and to assess whether it is appropriate to make an appointment with a physician. Visits to physicians are costly in terms of both time and money, so for most people, this option is used sparingly.

Physicians may worry that information searches on symptoms sends people to the doctor’s office more often than necessary. There may also be concerns with driving up overall healthcare costs due to overutilization. In the end, however, if there is a serious problem, early detection may in fact reduce overall healthcare costs.

Identification of Questions – Searches on the Internet can help to identify questions to ask a physician during an upcoming visit. Bringing a list of questions to appointments is a step toward improving commmunication between physicians and patients. Furthermore, having answers to these questions empowers the patient through increased understanding of the issues.

… for Insights

Understanding a Diagnosis – A diagnosis often sends a patient’s head spinning. In these moments, patients don’t hear all of the information a physician is sharing. The patient may ask some questions but forget to ask others or, think of additional questions only after walking out the door. Physicians may also send patients home with information to read.

Despite all of this information sharing, it is not unusual for the patient to go to the Internet. Patients are searching for clarification and additional information to get a better understanding of the diagnosis.

A very good friend of mine ended up in the hospital due to a heart attack. During his stay, healthcare professionals shared information on the procedure as well as the stent used for his angioplasty. And certainly, the physicians and nurses were very responsive to questions.

Once he was discharged, however, there were many more questions about what happened and what to expect going forward. It’s simply not possible to bring the healthcare team home from the hospital. For him and his wife, the Internet was a critical educational and troubleshooting tool. In his situation, the information gained helped his recovery as well as providing insights on how to achieve and maintain a healthy lifestyle.

… for Support

Patient/Support Groups – Once there is a diagnosis, the Internet is a great resource to find other patients with a similar diagnosis. Patient groups can provide a tremendous source of support and contribute to patients feeling less alone through shared experiences.

Advocacy and support groups are easily found on the Internet. Advocacy organizations are a wealth of information with key resources that can assist and support a patient.

The Internet is a resource for finding your tribe; those people who understand what it is like to have your diagnosis. Such groups provide perspective, information, and reassurance during critical parts in the patient journey.

One of Many Sources

As a source for healthcare information, the Internet is a tool, use with care. Rather than resist, perhaps there is an opportunity to acknowledge both the strengths and weaknesses of this potent resource. Information gleaned from the Internet provides a way to start conversations and listen to the questions and concerns of the patient. And patients should feel confident using the Internet for education, support, and troubleshooting.

Internet Links

There are many, but here are a few trustworthy sources for medical information on-line:

  • Mayo Clinic – a nonprofit academic medical center focused on integrated clinical practice, education, and research. https://www.mayoclinic.org/
  • Columbia University Irving Medical Center – a large academic medical center comprised of many centers of excellence in New York City. http://newsroom.cumc.columbia.edu/
  • American Cancer Society — a nationwide voluntary health organization focused on cancer research, education, prevention and support. https://www.cancer.org/
  • PubMed – a search engine accessing primarily the MEDLINE database of references and abstracts on life sciences and biomedical topics. https://www.ncbi.nlm.nih.gov/pubmed/

When Doctors Listen and What Happens Next

Posted on November 4, 2021 by - Communication

When Doctors Listen and What Happens Next

Listening is one of three skills necessary to great communication. When doctors listen, patients feel heard and seen as more than a medical diagnosis. When doctors listen, patients are engaged which can positively influence medical treatment, compliance, and even outcomes.¹ Therefore, how physicians interact with patients is critical.

Three skills form the basis for great communication – showing empathy, effective listening, and building trust. Each of these skills, however, begin with specific actions and behaviors. Joseph’s patient experience highlights how the actions and behaviors taken by his physicians led to better outcomes.

Joseph’s Diagnosis

Joseph has Sarcoidosis, an auto-immune disease that produces small lumps that affect organs in the body. I had the privilege of meeting Joseph as part of a series of interviews I’ve conducted with people experiencing serious illness. The intent of these interviews, to understand the role of advocacy and support during times of illness.

Eight years prior to his diagnosis, Joseph received treatment for Rheumatoid Arthritis. Apparently it is common to mistake sarcoidosis for other diseases. Throughout treatment, his Rheumatologist kept telling Joseph, “…there’s something about you and your case that is just, doesn’t quite sit right with me.”

In some patients, sarcoidosis can just spontaneously disappear. For others, as with Joseph, the disease is chronic requiring ongoing care and treatment. There is no cure.

Given the advanced stage of his disease, Joseph currently has a team of many different specialists (Neurologist, Pulmonologist, and Retina Specialist to name a few.) This team of experts listen and help to manage the many side effects associated with Joseph’s disease.

Building Trust

During our conversation, Joseph shared how he began to trust his medical team.

The neurologist on Joseph’s team is the physician that correctly diagnosed the Sarcoidosis. This doctor sent the initial test results to a multi-disciplinary Board at another hospital to review and confirm. The act of bringing in additional expertise was not seen as a sign of weakness. Rather, seeking additional input bolstered Joseph’s confidence. It was the willingness of this physician to admit there may be things he did not know. To Joseph, this was the foundational stepping stone toward building trust.

Additional Behaviors and Actions for Improving Communication

Communication as a Two-Way Exchange
Joseph described the communication style of his physicians as more of a dialogue, a give and take, rather than authoritative or paternalistic. He wouldn’t have it any other way. “I would question my providers with critical questions, research questions, pros and cons.” Joseph’s medical team were receptive to questions, rather than hostile to this approach.

Patient as Credible
Furthermore, when Joseph’s doctors listened, he felt they believed him. Joseph was able to share what was going on with his disease and doctors used this information to guide care and treatment.

All of my doctors, and I’ve got a lot of them. They’re all listening. They’re like, ‘you’re living it.’ When the symptoms that start off that are mild, and I tell them this is what’s going on, they don’t wait to say, ‘let’s see what happens’, they’re like, ‘if you feel it, we believe it, get into the hospital.’ Right? And so, so I really do feel that I’m in control of my care.

When doctors listen, the act of listening, viewing the patient as credible, are steps toward improving communication. As a result, the patient feels empowered. And this feeling of empowerment can make a positive difference in treatment and in healing.

Coordinating Care
All members of Joseph’s medical team took on the the responsibility of coordinating care.

…during the height of my illness, they were all really connected. They had to be, because if one prescribed x, another prescribed y, that could send me over quick. Because I was just so fragile, [to] what was going, to what could possibly upset my biology that no one was willing to take that risk…I think that’s why I’m here, in the state that I’m in, because of that coordination.

Given the many specialists involved with providing care for Joseph, communication and coordinating care were essential. Too often, patients are responsible for coordinating care and making sure communication between team members happens. As a patient, this is a difficult burden to carry, particularly when someone may be seriously ill.

Benefits to Improving Communication Between Physicians and Patients

During Joseph’s research into his illness, he learned that the likelihood of living with a high level of functionality is rare. He credits his medical team, the way they communicate and work with him, to being where he is now. Joseph is very much alive, engaged, and is blessed with a high level of functionality.

The neurologist calls Joseph his ‘miracle patient.’ As he notes, “Any other patient that would have come in with [your] symptoms, by this stage, they would be in a wheelchair…the attack on your spine, it just pulls you down, and most people don’t recover…the fact that you’re up and mobile, I look at you and I just shake my head.”

How physicians and patients communicate and interact with each other is critical. When doctors listen, show empathy, and build trust – these skills can make a difference in the quality of care delivered and ultimately the healthcare outcomes.

* Quotes in this post are from interviews conducted for my book, Navigating Illness: The Patient Experience, a work in progress. Names were changed upon an individual’s request.


¹Khan,A., et al. (2018). Patient safety after implementation of a coproduced family center communication programme: multicenter before and after intervention study. British Medical Journal. http://dx.doi.org/10.1136/bmj.k4764.

Why Are Patients Afraid to Speak Up?

Posted on November 4, 2021 by - Communication

Why Are Patients Afraid to Speak Up?

** When I initially posted this blog on why patients are afraid to speak up, a nurse friend called to say that nurses and tech staff will often have shorthand communication to indicate ‘dirty’ vs. ‘clean.’ She suggested the top of the garbage can may have been an indication the blood pressure cuff and oximeter were ‘dirty’ and in need of cleaning before the next patient. Fair enough — I was unaware of such designations and appreciative of the feedback. Are these types of communications common? Is this designation of ‘clean’ vs. ‘dirty’ protocol in your office, hospital, or urgent care center? But I admit, I am still confused. Why take something that is ‘dirty’ and expose it to an environment that is even dirtier? And what exactly are the cleaning protocols for a blood pressure cuff and oximeter?**

As a patient, have you ever been afraid to speak up, afraid to question medical professionals when something doesn’t seem quite right? Above is a picture I took during a recent visit to Urgent Care, after the nurse took my blood pressure and oxygen levels. I honestly do not know if the blood pressure cuff and oximeter used to check my vitals came from the top of the garbage can. I do know, however, it was early in the evening and this particular Urgent Care operates 24/7. There would be other patients. Why is the storage place for basic medical equipment on top of the garbage can? And, as a patient could I ask this question without fear of repercussions?

An Emphasis on Safety

Reducing infections from medical procedures is one of many goals in healthcare. Blood pressure monitoring and oxygen levels are standard procedures. Therefore, it seems careless to have frequently used medical equipment placed on top of a waste container. A garbage can is not a sterile environment. Statistics on infections within the healthcare environment show:

Healthcare-associated infections result in excess length of stay, mortality and healthcare costs. In 2002, an estimated 1.7 million healthcare-associated infections occurred in the United States, resulting in 99,000 deaths. In March 2009, the CDC released a report estimating overall annual direct medical costs of healthcare-associated infections that ranged from 28 – 45 billion.¹

Infections are an ongoing battle in healthcare. There are good reasons for protocols to reduce and/or eliminate harm. As the patient, was it safe though for me to raise this concern without offending, without repercussions to the quality of my care?

Lapses in Care Do Occur

I was visiting the Urgent Care due to an angry infection in my right eye. Red and pus-filled, my eye was unpleasant to look at and uncomfortable for me as well. The nurse who took my blood pressure put on gloves for the procedure, apologizing as she did so. She explained that the infection in my eye had a high probability of being very contagious. Fair enough. But then she turned around and placed the medical equipment on TOP of the GARBAGE CAN.

There’s a disconnect here. It’s not from a lack of knowledge or inadequate facilities. Nurses are educated, skilled medical professionals. And this particular Urgent Care Center is well funded and generally quite clean.

Why Patients Are Afraid to Speak Up

Based on my experiences, as well as others, such observations are usually not well received. About five years earlier, in the same Urgent Care center, a nurse began to insert an IV line in my arm without gloves. I needed antibiotics due to a nasty cat bite on my finger. I asked about gloves, a common step to reduce the possibility of infection. She laughed and tried to dismiss my concerns but she did put on gloves. I felt she failed to understand my concern. She did not see her action as a break in protocol, with the possibility of introducing infection. I was the one out of line for asking the question.

I’ve interviewed a number of people with serious illness for a book about the roles of advocacy and support. I met Trish at a conference focused on the intersection of Art and Medicine. Trish is a Physician Assistant (PA) with over 33 years of experience. During the conference we discovered a mutual interest on issues around physician burnout and talked frequently by phone after the conference. As a practicing PA, Trish brings both experience and perspective.

Trish’s Patient Experience
Trish was seriously ill for many years with Lyme Disease. It took nearly two years just to get a diagnosis. Her symptoms were debilitating. At one point, before the diagnosis, she was in pre-op for surgery proposed as a solution to her symptoms. In the end, the surgery was not related.

As a PA, Trish knew protocol. As a patient, she wasn’t afraid to speak up, to point out a break in procedures. But she felt the burn for speaking up:

I was in the pre-op place, and the nurse was starting an IV, and she dropped the end of the IV that was going to go in my arm on the floor and then picked it up and started to put it in my arm.

TRISH: That touched the floor.

NURSE: It’s fine, I just picked it up.

TRISH: That touched the floor.

And she, [MAKES DISGUSTED SOUND] and threw it down on the bed and marched out to the nurse’s station and another nurse came in, and she was:

NEW NURSE: Can I help you? Is there something wrong?

TRISH: The end of the IV that she’s going to put in my arm fell on the floor.

And she seemed to get upset about that. So she huffed and then she undid the tubing and she went off and got another one, then she, she made a big show of laying a sterile drape and putting things out on it and being, like, extra extra careful. But it was in a really condescending manner.

Broader Implications
As a medical professional, Trish’s concern extends beyond just this one incident. At the time of seeking medical care and treatment, patients are particularly vulnerable. How many patients don’t speak up when there are lapses in protocol because of a concern with repercussions and compromising the quality of care? Or perhaps even more worrying, there may be times when patients do not know when protocols are breached. As Trish notes:

And, and when things like this would happen to me … I was at their mercy. You’re at their mercy when you’re a patient, and you don’t want to piss them off more. Then they won’t take good care of you. And so I just sat there. But it was just one more thing that had happened to me that I was just like, shit, how many times does this happen to other people? And they don’t even have as much gumption or medical knowledge as I do to protest.

Trish

On the Same Team
As a patient, if you see a break in protocol, it is absolutely within your sphere of responsibility to speak up. Breaks in procedures meant to protect patients should be addressed. Mistakes happen and at times insufficient attention may be given, or there are distractions. Such incidents are not done with malicious intent. Yet, when they happen, patients must speak up. Your health and your life are at stake.

* Quotes in this post are from interviews conducted for my book, Navigating Illness: The Patient Experience, a work in progress. Names were changed upon an individual’s request.


¹Custodio, H.T., Steele, R.W. (2016) Hospital-Acquired Infections. Medscape. https://emedicine.medscape.com/article/967022-overview

Three Great Patient Advocacy Blogs

Posted on March 6, 2021 by - Reviews & Recommendations

3 Great Patient Advocacy Blogs

One thing I’ve learned writing patient advocacy blogs, there are many wonderful advocates dedicated to educating and informing others on health and healthcare. Like me, their goal is to empower people with information so they can advocate for themselves and those they love more effectively during health challenges.

Today’s post highlights three of these blogs, three different aspects of healthcare – heart health, breast cancer, and improving relationships between patients and healthcare providers. This information may be useful to you or to someone you know. Please share as you see fit.

Heart Sisters

myheartsisters.org
Created by Carolyn Thomas

Background: In 2008 Carolyn was hospitalized with a myocardial infarction, a “widow-maker” heart attack after a mis-diagnosis of acid reflux from the same Emergency Room two weeks earlier.

Objective: Dedicated to providing information and support to women living with heart disease.

Website: Full of some stunning statistics (e.g. heart disease kills six times more women worldwide than breast cancer) as well as loads of practical information such as how heart attacks often present differently in women than men and what are the signs of heart attack in women.

Blog: Carolyn posts every Sunday and these posts are enlightening. Examples of recent articles:

Book: A Woman’s Guide to Living With Heart Disease

Social Media: Follow HeartSisters on Twitter – @HeartSisters

Nancy's Point

nancyspoint.com
Created by Nancy Stordahl

Background: In 2008, Nancy’s mother died from metastatic breast cancer. In 2010, Nancy was diagnosed with stage 2b breast cancer. She is also brca 2+.

Objective: Dedicated to providing information and support about breast cancer and loss. As Nancy states:

“I share candidly about my breast cancer experience. I refuse to sugarcoat this horrible disease. If you or a loved one has been diagnosed with cancer or if you are grieving, you’ve come to the right place.”

Website: Very comprehensive site sharing key information related to diagnosis, treatment, chemotherapy, hair loss, mastectomy and reconstruction. Deep dives on other aspects related to the cancer experience – survivorship, advocacy, and grief.

Blog: Nancy posts weekly. The information is extraordinarily relevant and practical. Examples include:

Book: Nancy has published several books, her memoir is: Cancer Was Not a Gift and It Didn’t Make Me a Better Person.

Social Media: You can like/follow Nancy on Facebook – facebook.com/NancysPoint and Twitter – @NancysPoint

How to Talk to Your Doctor

howtotalktoyourdoctor.com
Created by Christie VanHorne

Background: Christie, with a Master’s in Education and another in Public Health, brings 20 years of experience in the health sector to her patient advocacy. Christie is President of CVH Consulting, a public health consulting firm providing training and health education to non-profit, government and public health organizations.

Patient-Centered Programs: Such programs focus on educating those living with chronic disease, facilitating support groups, as well as providing community-based prevention workshops.

Professional Workshops: These workshops use evidence-based training methods and facilitate health communication, skills practice, and performance-based experiences.

Blog: Started in 2020 to improve communication skills in the doctor-patient relationship. The information provided in these posts is specific and immensely valuable. Examples include:

Podcast: Since January 2021, Christie co-hosts a podcast about periods called FLOW. This is a monthly podcast for women with bleeding disorders, menstruating individuals who experience extreme bleeding and those looking for more access to menstruation-health information

Social Media: Follow Christie on Facebook – facebook.com/howtotalktoyourdoctor

These are three great patient advocacy blogs. Each of these women have pulled together a wealth of information intended to help others faced with similar health challenges. Should you, or someone you love, need such information please take a look because each of these sites will help answer many questions you will have. Let me know if you find this type of information valuable and I will highlight the excellent work of other patient advocates in future posts.

All my best.

Can Virtual Care Replace In-Person Care?

Posted on December 9, 2020 by - Communication

Can Virtual Care Replace In-Person Care?

Among the many changes to our lives imposed by the pandemic, one potentially positive offering is on-line doctor appointments. Such visits are variously called: virtual health, telemedicine, telehealth, or virtual care. The patient connects over the internet either through a computer, tablet, or mobile phone rather than meeting with a doctor in the office.

At first glance, there’s great appeal to this option. Virtual meetings eliminate drive times, parking hassles, and long stints in crowded waiting rooms. The neurologist monitoring my multiple sclerosis is based in Portland, an hour and a half drive, one-way, on a crowded interstate. Her office is in a very large and busy medical center, not a place I want to spend any time during a pandemic.

Some Pluses and Minuses of Telemedicine

The feedback on telemedicine from patients and physicians in social media and healthcare literature is mixed. Some patients feel communication with physicians has improved with on–line visits citing more personal interactions and longer appointments. Many patients with chronic conditions are particularly enthusiastic with virtual options. Such patients may experience issues with limited mobility or a desire to limit in-person interactions during Covid-19.

The significant downside of telemedicine is the technology. Not everyone has access to high speed internet, particularly patients that live in rural areas. And the costs associated with purchasing high speed internet is another barrier to access.

My First Telemedicine Visit

As a new patient, my first meeting with the neurologist in Portland occurred at the end of 2019. Due to Covid, our spring appointment moved on-line. I was somewhat nervous about this initial virtual visit.

The logistics of the technology was certainly manageable, just a bit intimidating. I was ecstatic not to have to make the hour and a half drive and to avoid the exposure to other people. Given this was only the second appointment, I was also hopeful that we might be able to advance the relationship in some small way.

In the end, I found the telemedicine interaction disappointing. The visit, while efficient, lacked a personal connection and our time felt abbreviated. More importantly – the appointment was incomplete. Virtual connections are left wanting by their very definition. There is no physical exam, no opportunity for a physician to palpitate, probe, and measure the physical well-being of the patient. (More discussion on the importance of touch in an upcoming post.)

What is Missing…

Here are some of the hands-on measurements that typically occur at each of my in-person neurological appointments:

  • Blood pressure
  • Eye exam: In a darkened room, the physician shines a small flashlight into each eye. This light reflex test can detect potential nerve damage.
  • Nine-hold peg challenge: Using only one hand, I insert nine pegs into small holes on a wooden board and then must remove each of the pegs individually. This is a timed test and measures finger dexterity and eye-hand coordination both indicators of any neurological complications.
  • 10-metre walk test: I must walk as quickly as possible to a mark 10-metres from my starting position. This is also a timed test and measures comfort and gait speed.
  • Reflex tests: A reflex hammer tapped on my tendons tests whether the reflex response is stronger than normal or more frequent.
  • Babinski Sign: The physician scrapes a sharp blunt object along the bottom of the foot. In MS patients the big toe moves up and the toes fan out. Infants have this neurological reflex but then it disappears. When this reflex is present in adults, it is an indicator for MS.
  • Pin pricks: A sharp object such as a pin pricked on different points of my feet, legs, hands, and arms tests the integrity of the nerve fibers.
  • Tuning fork: A vibrating tuning fork is placed on different points of my feet and I must report when I can no longer feel the vibration.

… And Why it Matters

NONE of these assessments happen in an on-line visit with a doctor. While each of these tests are important to the initial diagnosis of MS they also provide insights for physicians when monitoring the progression of disease. Measuring change has tremendous value since nerve damage can occur that is not always apparent to the patient.

For the past few years, I have noticed a difference in my ability to feel pin pricks and to accurately tell when the tuning fork stops vibrating. When the phrase Babinski Sign showed up on the notes after one of my routine visits, I had to look up what it might mean.

Virtual Care Does Not Replace In-Person Visits

Overall, I am extraordinarily fortunate. My MS has remained stable with few physical manifestations since I was diagnosed in 1993. For patients where MS is more active, physician monitoring and management of the disease is crucial. And the need for regular physical examinations extends across multiple disease states – cardiac health, cancer, diabetes, and other neurological conditions such as ALS and Parkinson’s Disease to name a few.

Pronouncements heralding virtual care as here to stay and the future of medicine are premature. Such visits are a great convenience but should only serve to complement not replace in-person care and treatment. The physician-patient face-to-face meeting is a hallmark of quality healthcare and physical exams are an essential component.

I look forward to the day when I can safely meet with my neurologist in person.

So, tell me – what are your experiences with on-line doctor visits? – I’m very curious to hear how it is going for you.

Finding a Doctor After a Move

Posted on October 27, 2020 by - Healthcare

Finding a Doctor After a Move

Just over a year ago my husband, Tom, and I arrived in the Pacific Northwest after many years of living in various places throughout the Midwest. We were in search of better weather – relief from icy cold winters and hot humid summers.

Besides weather, two other major considerations for relocating – to be out west and in a college town. One significant factor we didn’t consider — healthcare.

I don’t believe we were completely negligent. We knew there was a hospital given we had visited with our son on Thanksgiving Day just the year prior to our move. The hospital was clean, the ER care efficient, and billing wasn’t a hassle.

Additionally, we asked a friend who had grown up in this particular place about the quality of healthcare; there weren’t any negatives or red flags. Our insurance provider even provided us with a list of recommended physicians that accepted our insurance plan.

Active Participants in Healthcare

I never suspected that finding a physician would become the major stumbling block to establishing healthcare. The vast majority of physicians in this city are aligned with either one of two physician groups (one of the groups is affiliated with the hospital.)

Tom and I take care of our health by exercising regularly and eating a well-balanced diet. Despite our best efforts though we both have chronic medical conditions. For Tom it’s managing high cholesterol and for me it’s Multiple Sclerosis. Therefore, we expect our healthcare providers to have the expertise to manage such medical conditions.

As senior citizens, we also desire healthcare providers with both the knowledge and the experience on medical changes that occur with aging – bone health, metabolism, and cardiovascular issues.

We consider the relationship between a provider and patient a partnership. In our experience, the practice of healthcare improves when there is good communication and trust, factors dependent on the continuity of care. Such care begins by establishing a health baseline; such a baseline provides context for whether or not any changes should be a concern.

Difficulties With Finding a Physician

Tom was the first to begin the physician search and ran into obstacles immediately. The physician group not directly related to the hospital would not accept new patients with Medicare. And the hospital affiliated physician group wouldn’t let Tom choose a physician from the list of physicians recommended by our insurance plan.

In fact, the physician group selected his provider, a D.O. (Doctor of Osteopathic Medicine). My husband did not have a choice. There was no opportunity for him to select a physician based on patient recommendations, physician specialty, experience, or compatibility. After one year, Tom’s physician moved into a new role. So much for continuity and having a baseline. Tom now begins again, this time with a newly assigned Nurse Practitioner as his primary care provider.

More Difficulties with Finding a Physician

My experience with finding a physician presented slightly different challenges. I was determined to select a primary care physician based on my criteria – Internal Medicine and female – from the list provided by our insurance company.

After a few phone calls, it became clear I could not make an appointment directly with any of the physicians in the group affiliated with the hospital. It was mandatory to use their Find a Doctor phone system. And apparently the only primary care providers available to me as a new patient were either D.O.’s or Nurse Practitioners.

I finally found a physician from the physician group not affiliated with the hospital. The receptionist on the phone though wasn’t sure whether this physician was accepting new patients. I had to wait several days for a return phone call. Fortunately, this physician was accepting new patients, however, the next available appointment was not for another NINE months. I said I would wait.

My first appointment was informational only – no annual exam. When the appointment finally happened, I discovered the reason for the long wait — she only works part-time. I did mention our difficulties with finding a provider and she informed me there is a shortage of primary care physicians. Our small city not only has challenges with getting primary care physicians to locate here but struggles to keep them once they arrive.

A Primary Care Physician Shortage and the Impact on Quality of Care

The national news has certainly covered the lack of primary care physicians and how this issue is only going to deepen given fewer medical students choosing primary care as a profession. But I would have thought a city in the Pacific Northwest with a high quality of living, that such a place would be desirable for new physicians to locate, and particularly new physicians with families.

The whole process of finding a primary care doctor has been a bit of a culture shock for both of us. I’ve had to wait for physician appointments before but I’ve never had ACCESS to a physician controlled by a physician group. And as my husband said to me recently, he has no CONTROL over his own healthcare. He is beholden to whatever may be the strengths or weaknesses of the provider selected for him.

This does not feel like patient-centered healthcare. And as senior citizens, we feel particularly vulnerable. This is a time in our lives when continuity seems vitally important, when relationships with providers that we know and trust is preferred, and good communication is essential.

What are Your Experiences?

So, I am curious about your relationships with medical care professionals. More specifically, have you experienced any issues due to the national shortage of primary care physicians?