Author: Laurie Reed

Why Patients Use the Internet for Healthcare Information

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

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?

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

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?

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

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?

When Friends Get Sick – Here’s How to Help

When Friends Get Sick – Here’s How to Help

After her diagnosis of breast cancer, a friend called Sinead to tell her what to expect when dealing with cancer. “You will actually lose some of your friends,” said the caller. Confused, Sinead asked, “Why would I lose some of my friends?” Her friend said, “For different reasons, but you will, and don’t take it personally.” Sinead then told me, “And I did. I lost two good friends who, from the day I was diagnosed, have never contacted me.”

At a Loss and Don’t Know What to Do

Losing friendships is common during a challenging illness. In fact, such loss was a recurring theme in my interviews with people facing a serious health challenge.

Why does this happen? As the caller suggested, there may be many reasons. Included among these might be guilt, fear, or maybe even something as simple as just not knowing what to do. If you are the friend wondering how to help, or worrying about doing the right thing, here are some ideas for what to do when friends get sick. Although the ideas may seem simple, these acts can make a world of difference to a friend in need.

What to Do When Friends Get Sick

Check-in. Stay in touch.
Don’t be offended if you don’t hear back. Illness changes the playbook. Someone diagnosed with a serious illness is dealing with a whirlwind of information, questions, and uncertainty. When a friend gets sick, navigating a path through a serious illness is stressful, as well as physically and emotionally exhausting. Your friend needs to know you care although she may not always have the time nor the physical or mental energy to respond. Don’t feel discouraged if you don’t hear back but continue to check in on occasion either with a card, e-mail, or even leaving a phone message. Letting your friend know you are thinking of her, and offering to help in some specific way, sends a positive message during a difficult time.

Send a card. Send flowers. Bring soup.
Such gestures are concrete ways of saying, ‘I care’ and ‘I am thinking of you,’ when a friend gets sick. These simple acts of kindness are deeply meaningful to a friend whose world has been turned upside down. Trained as a registered nurse, Nora worked as a case manager for 15 years helping patients access the care they needed. Comfortable with taking care of others, the tables turned dramatically one morning when Nora suffered a stroke during a visit to her in-laws in a small Vermont town.

Nora expressed surprise to learn that simple gestures could mean so much. “People have brought me … soups and … had lunch with me, gone for walks with me, things like that, it’s been really good.” Having experienced such kindnesses, Nora knows how important it is to do the same for others. “I had so many flowers and it just, that’s very uplifting … I just love flowers and so it’s made me think about if I have an associate, it doesn’t matter if they’re a good friend or just…someone I work with … a card … means so much, it really does.”

Offer to accompany the patient to doctor’s appointments and take notes.
Be an advocate. When patients reflect back on their experiences, having someone with them for doctor’s appointments to listen, to help with questions, and to take notes, is of significant value. Diagnosed with myelodysplastic syndrome and myeloprolific neoplasms, a blood cancer often referred to as pre-leukemia, Bill spent a lot of time in doctor’s offices both before and after the diagnosis. To help navigate these physician visits, Bill was fortunate to have his sister, who also happens to be a nurse. “My sister went to every doctor’s appointment with me. She read all the literature about my disease.”

Don’t worry about having a medical background; simply having someone else in the room to listen, to take notes, and to help with questions is so important. Although Sinead did not have this type of support during her own treatment, she recognized the importance of the role and willingly took on this responsibility for another friend diagnosed with cancer. “I took notes for her the whole time and helped her with different things and questions and where to go and how to find out information, all the rest of it.”

Find ways to meet daily necessities.
A friend of mine was diagnosed with breast cancer just this past year. We talked recently about the difficulty patients often have asking for, and accepting help, even when it may be needed. With one child at home, and a husband working full-time, meals from friends and family were vital to Sarah and her family when she was recuperating from surgeries. Sarah noted that asking for help was much easier when she could reach out to one person, rather than several.

There are a number of websites to help friends and neighbors coordinate meals for someone in need. You can help by setting up the site and letting others know it is available. Here are a few:

Share the Care and Care Calendar can extend to include other activities such as running errands, shopping, walking the dog, yard or housework.

Listen. Really Listen.
Now is not the time to tell your story. Sinead recalls meeting up with a group of friends shortly after her diagnosis, and saying, “I need to tell you something… I’ve just been diagnosed with breast cancer. And I barely had it out of my mouth, and somebody said, ‘Oh, my gosh, a friend of mine just went through that and blah, blah, blah’ and the rest of us just sat there and listened to her story. .. and then eventually I got to talk again. And that didn’t just happen once.”

When battling cancer, or any other serious illness, there is a lot of information to process, decisions to make, and new emotional territory to navigate. Your friend really just needs someone who will listen. Listening without judgement, opinion, or interruption is an art that takes practice but is critically important when friends get sick. Remember to keep the focus on the patient.

Recovery is a Process.
Recovery does not mean the patient journey is over. Even when a patient’s surgery is successful, or the cancer is in remission, or she has been declared cancer-free, there is more. Residual physical and emotional challenges are common. Jaime speaks poignantly of her experience with life after a serious illness.

Jaime endured nearly a year of invasive treatments and procedures, including a hysterectomy, based on misdiagnoses. By the time of Jaime’s diagnosis with colon cancer, the cancer was Stage IV with metastases to the liver. Surgery appears to have been surprisingly effective and Jaime is in recovery mode. However, when we spoke, Jaime confided,

It’s really difficult because I feel like I can’t plan anything, like, going on vacations or … just really life in general. And that sets off the depression, and that I think is the most difficult thing to, to work with, is the depression and the anxiety of the ‘what if?’, just waiting for the other shoe to drop. And ‘oh, no, we didn’t get all the cancer, there’s a recurrence’… that’s how it’s affected the rest of my life, I think, more than anything else is just fear. “And, so I’m trying to cope with that… a lot of times, people will say okay, well, you’re cancer-free now, so … everything goes back to normal. Not so much. [LAUGHS] It’s almost, I would almost rather go through treatment and knowing … what I’m dealing with then, ‘you’re disease free’ and having that fear in the back of my head.

Jaime

As a friend, recognize the validity of the recovery process and continue to reach out, show kindness, and listen, really listen.

Step Up and Take Action

A friend’s serious illness is the time to step up and show the meaning of friendship. There are many different ways to help when friends get sick – some grand and others fairly simple – each can have a positive impact and can be meaningful. Take the time to ask, listen, and act – don’t be the friend that disappears.

Learn more from patients’ experiences. Explore the value of advocacy and support when getting a medical diagnosis as well as learning how to ask for, and accept support during a serious illness.

*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.

What Are Hospitalists and Why Should You Care?

What Are Hospitalists and Why Should You Care?

Jim first encountered hospitalists during his stay for necrotizing (flesh-eating) pneumonia. Over the years, Jim’s experiences with hospitals have been many including cardiac by-pass surgery and a hip replacement. Both Jim and his wife Gwen, however, describe their recent experience with hospitalists as unsettling. When Jim was admitted into the hospital, his primary care physician could not help manage his care. The hospital had their own doctors.

What are Hospitalists?

Hospitalists, as defined by the Society of Hospital Medicine are: “Physicians whose primary professional focus is the general medical care of hospitalized patients.”¹ The presence of hospitalists in U.S. hospitals has increased dramatically in a relatively short time frame. In 2014, the Society of Hospital Medicine estimated more than 44,000 hospitalists worked in U.S. hospitals, a significant increase from the estimate of 14,000 only ten years earlier.² Reasoning behind the implementation of hospitalists:
  • Physicians dedicated to hospitals will know hospital procedures. Such familiarity suggests greater efficiency and effectiveness when ordering tests, prescribing meds, and handling paperwork.
  • Hospitalists know the clinical staff. Knowing clinical staff should facilitate coordination of different specialists, or forming a care team, depending on patients’ needs.
  • A hospitalist provides a single point of contact (SPOC) for patients, families, and caretakers. A SPOC should improve communication and understanding of tests and procedures.
Bottom line, hospitals are embracing this role with the intent to improve both efficiencies and the quality of care within the hospital.

Jim's Experience

As a patient however, Jim is now dealing with a physician that doesn’t know him. A physician who doesn’t have experience with his medical history. Quite simply, the hospitalist doesn’t know what normal looks like. As Gwen put it, “the hospitalist doesn’t know that Jim’s face is very red all the time and that his face should be all red, maybe. And that when he came, if he was green, maybe your own doctor would know ‘Oh, he’s always green, he’s always blue.’”

Primary care physicians have both history with a patient and they know what is normal. Jim and Gwen experienced a lack of continuity in the delivery of care, during a dramatic health scare, a time when continuity matters.

So What are the Statistics on Hospitalists?

Recent studies have examined the role of hospitalists in both patient outcomes as well as in the transition of care when patients are discharged.

  • In a study published in December 2017, the Journal of the American Medical Association concludes that “patients cared for during a hospitalization by their own primary care physicians had slightly longer lengths of stay, were more likely to be discharged to home, and were less likely to die within 30 days compared with those cared for by hospitalists.”³ These findings would suggest that familiarity does have an important role in patient outcomes.
  • Another study, funded by Patient-Centered Outcomes Research Institute (PCORI) and published in the Annals of Family Medicine, examined care transitions from the perspective of patients and caregivers. The lead author on the study, Suzanne Mitchell, commenting on the findings during an interview with AAFP News said, “The real punchline is that despite millions, if not billions, of dollars of investment to improve care transitions in hospital discharges, from the patient and caregivers’ perspective, everything still looks the same.”

Taking Charge of Your Hospital Experience

Hospital stays are often stressful; there is a lot happening that can be new and confusing. And the trend toward hospitalists is still on the upswing. As frustrating as it may feel, it is necessary for both patients and caretakers to take a more proactive approach regarding their care during a hospital stay and during discharge.

During the Hospital Stay

  • Share all of your prescription medications as well as over the counter supplements with hospital personnel. Ensure that this information becomes part of your medical record in the hospital. Consider creating a list now. Keep it updated periodically and have it handy when needed. Such a list is important not just for a hospital stay but also for physician appointments outside of the hospital.
  • Clarify whether or not the hospital utilizes hospitalists. If so, make sure to get to know this person. During a hospital stay, many hospital personnel rotate in and out of the hospital room. If a hospitalist should introduce him/herself, the introduction may get lost, or a term other than hospitalist is used. Make sure to know who the hospitalist is and ask this person to clarify his/her role, and share what to expect, going forward.
  • Hospitalists work odd shifts – sometimes 7 days on and 7 days off. Find out the schedule so that you can be prepared if there is a change. Ask for a clarification of the hand-off procedure between hospitalists (does it happen in-person, through notes in the medical chart, e-mails, etc…)
  • Confirm the hospitalist has been in touch with your primary care physician (if you have one) regarding your hospitalization and your diagnosis.
  • Verify that other clinical personnel and specialists in the hospital are aware of the treatment plan and directions from the hospitalist. Ensure that everyone has the same understanding regarding medications and next steps.

Before/During Discharge

  • Determine whether or not your hospitalist has consulted at any point with your primary care physician during your hospital stay. If so, identify what was communicated.
  • Ensure there is a discharge plan for your release from the hospital. Make sure this plan is reviewed with you before you leave. Take the time to understand the discharge plan and ask any questions you may have regarding the plan. If there are concerns about safety, or what to expect when you get home, be sure to share these as well.
  • Review the medications that are prescribed for you as part of your discharge. If there is a change in the list from when you went into the hospital, make sure you know the reasons for the change.
  • Check to see if you have been provided with a number to call should you have any questions or concerns after you are discharged. If a number was not provided, ask for a number. Also ask for a number that is good 7 days a week, 24 hours a day, if you should need emergency assistance.
  • Determine whether or not your primary care physician will be notified of your discharge. Ask when the primary care physician will receive the discharge summary from the hospital (typically it should arrive within two weeks, if not sooner.) Information to be included in a discharge summary: diagnoses, abnormal physical findings, important test results, discharge medications, follow-up arrangements made and appointments that still need to be made, counseling provided to the patient and family, and tests still pending at discharge. Request a copy of the discharge summary be sent to you as well.

Why Does It Matter?

These are just a few steps to take during a hospital stay to ensure safety and optimize care. Again, the hospitalist does not know what normal looks like. It’s important to share, if like Jim, your face is normally red. Or perhaps for you, normal is green or maybe even blue. For more information on improving communication between physicians and patients, check out this post on what happens when doctors listen.

Despite over-medication and other communication issues, Jim survived his bout with necrotizing pneumonia. He attributes his good fortune to very proactive family members who monitored his care and treatment. If you, or someone you love, requires hospital care, remain vigilant and use the practical steps outlined above as a guide to better manage care and treatment.

* 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
Pantilat, S., (2006). What is a Hospitalist? The Hospitalist. https://www.the-hospitalist.org/hospitalist/article/123072/what-hospitalist.

2 Siamak, N., (2017). What Is a Hospitalist? MedicineNet.com. http://www.medicinenet.com/script/main/art.asp?articlekey=93946

3 Stevens, J. P., Nyweide, D. J., Maresh, S., et al. (2017) Comparisons of Hospital Resource Use and Outcome Among Hospitalists, Primary Care Physicians, and Other Generalists. JAMA Intern Med, 177(12): 1781-1787. doi.10.1001/jamainternmed.2017.5824

4 Porter, S. (2018) Patients, Family Caregivers Talk Tough on Care Transition. Annals of Family Medicine Research. https://www.aafp.org/news/practice-professional-issues/20180628annalstransitions.html

5 Kripalani, S., Jackson, A. T., Schnipper, J. L., Coleman, E. A. (2007) Promoting Effective Transitions of Care at Hospital Discharge: A Review of Key Issues for Hospitalists. Society of Hospital Medicine. 2(5). doi.10.1002/jhm228

Asking For and Accepting Help During a Serious Illness

Asking For and Accepting Help During a Serious Illness

Support is essential to help navigate the many challenges of a serious illness. Illness can bring difficult treatments, painful side effects, and patchy recovery periods. Asking for and accepting help, however, is often complicated because we value our independence.

Admitting a need for help is acknowledging our sense of self has changed. This is a hard reality to face. And yet, based on interviews with people facing serious health challenges, this journey is best managed with support.

These powerful narratives, based on patients’ experiences, deliver critical insights for times of serious illness.

Asking for Help During Times of Serious Illness

Jackie’s breast cancer diagnosis changed quickly from a relatively straight forward procedure to Stage III-A cancer with activity in the lymph nodes requiring both chemotherapy and radiation. As a result, the number of people Jackie informed about her cancer expanded.

Although Jackie has a large family that live close by, as a single working mother she knew she would need additional help … “and the next thing I knew, people are bringing food, especially after the surgeries and I’m getting cards and e-mails or texts of support, I mean it was huge.” Asked what this type of support meant to her, Jackie replied: “It meant everything.”

Brea required brain surgery for a malformation that was causing life-threatening symptoms. As a mother of two young children, Brea knew she would need help:

…. this was something I couldn’t tough out, and I had to ask for help, and that’s hard….That’s hard for me … [but] I had to. I had no choice… I had a two-month-old, a two-year-old and, it wasn’t just me. I had to think about them, and I had to think about my husband, who had to eat. [LAUGHS] He doesn’t cook. And, so I had no choice. I had to ask for help.

Brea

In both of these situations, asking for help provided the support needed to allow Jackie and Brea to focus on treatment and recovery during a serious illness.

Accepting Help During a Serious Illness

A stroke turned Nora’s life upside down. Normally a very active and independent person, Nora’s stroke delivered a sudden and dramatic change. Additionally, in her job as a nurse Nora takes care of others. Nora found it a difficult and uncomfortable challenge to be in a position of needing, let alone accepting, help.

When Nora returned home from the rehabilitation center friends would offer to drive her places, go for walks, and bring food. At first, she was reluctant to accept these offers of support. But this changed, as she told me:

I’ve allowed myself to do that because they, they wouldn’t be offering if they didn’t want to do it … I’m really independent, I don’t like to be a burden to people, so that’s been, … it’s just a different experience for me.

Nora

Accepting help is difficult because it is an admission that things are not right.

Joseph’s sarcoidosis, an autoimmune disease where tiny clumps of inflammatory cells negatively impact different parts of the body, often sent him to the hospital. During these hospital stays, Joseph’s friend Dave would sit with Joseph whether he was awake or not. Joseph would try to send him home, “there’s no reason to come here because I’m going to be asleep most of the time.”

And yet, when Joseph would wake, “There’s Dave setting in the corner.” Joseph adds: “…at the time it just felt like this was ridiculous, why doesn’t he go home to be with his family. But then you realize how much that was an aid to you…sometimes the help that I received, I only understood the power and impact of it retrospectively….it was critical.”

Support Provides Relief for Caretakers

When Lena began chemotherapy for Stage IV colon cancer, she considered her job “was to take care of myself and rest, and that’s what I did.” As the chemo continued, the effects got worse and Lena would be knocked down for days.

During treatment, Lena had three children still living at home, and her husband worked full-time. As her husband noted, “how am I supposed to keep working and take care of you and take care of everybody else?” So when people offered to help, Lena’s husband gratefully accepted.

Meals were delivered two to three times a week from October to June. Four women took turns each week with the laundry until Lena’s children took over this responsibility. And another woman came over to clean just the first floor of the house. As Lena observes,

…it’s just how people, how people want to help, and they just so want to help and I think it’s important to let them help. Because I know people that keep things to themselves and don’t let people know what’s going on with their family and don’t know how to accept the help. And, we did. We just let anybody do whatever they wanted to do, and my, cancer battle was a very public battle with everything that my husband would write on, the Caring Bridge and everything. It was, we were very open with it, and I think people appreciated that and felt a part of it.

Lena

Accepting offers of help provides much needed relief to the primary caretakers of those with serious illness.

5 Points to Consider When Help is Offered

  • People offer support because they genuinely care and want to help
  • Offers of help provide needed relief and support, not just for the patient, but caretakers and family members as well
  • Support allows the patient to focus on treatment and recovery
  • ‘Share what types of support may be needed. People may offer to help but don’t know what needs to be done. Others may not offer because they don’t know what may be needed.
  • Accepting help can provide unanticipated gifts both for you as well as those providing support.

When illness strikes, it is difficult to acknowledge that help may be needed, that you can’t do this all on your own. Support during a serious illness, however, allows the focus needed to optimize treatment and recovery.

* 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.

Getting Medical Test Results? Bring Someone With You

Getting Medical Test Results? Bring Someone With You

Receiving medical test results for a serious illness is like a sucker punch. Illness rattles perceptions of self and identity, forever. Patients describe feeling “overwhelmed,” emotionally overloaded, at the time of diagnosis. According to patients, having someone there when getting medical test results, is invaluable.

Physicians differ in their skill and approach to sharing significant medical test results. And patients differ with how they hear, interpret, and absorb this information. It is an emotionally laden exchange, packed with opportunities both realized as well as missed.

When Getting Medical Test Results, Bring Someone With You

During interviews about the patient experience, people mention how valuable it was to have someone with them when meeting with the doctor and getting test results. This feedback surfaced during many interviews conducted to examine the role of advocacy and support. The value of having someone in the room is not just for emotional support, but to help process the information, and to assist with questions.

Sinead, a breast cancer survivor understood the importance of this role. When a friend asked, she was willing to take on this role. As she knew from experience, “When you’re getting so much information, you need a partner there who’s going to listen and take notes and say, okay, this is the next step.” Learning how to ask for help, as well as how to accept support, are important skills to adopt during times of illness.

Consequences of Going Alone

Jackie would learn from her own experience the value of bringing someone with her when meeting with the physician. The appointment was to follow-up on biopsy results after a diagnostic mammogram showed some architectural distortion. Previous abnormal test results had turned out to be micro calcifications, benign, so Jackie fully expected a similar report.

Jackie scheduled the appointment so that she could stop by on her way home from work. This time, however, the biopsy came back positive for cancer. The radiologist did not mince words in telling Jackie the diagnosis. She was handed a big book on breast cancer, and the next thing she knew she was talking with a surgeon, getting registered as a new patient, and being asked if she would like a breast lift with her reconstructive surgery.

You’re just shocked, stunned. And again, I had been working all day. I didn’t even think of bringing someone with me. And I look back now, and I really, really wish I had. You know? I mean, for God’s sake, I had a biopsy…I should have had someone to just be with me because I really, I didn’t know what to think.

Jackie

The medical test results from the biopsy suggested the cancer was small, non-aggressive, so the recommended next step for Jackie was a lumpectomy rather than a mastectomy. Believing that her diagnosis was relatively straightforward, Jackie arrived alone to learn results from the surgery.

However, these test results indicated the tumor was bigger than anticipated, and three of the sentinel nodes tested positive for cancer. It was a very emotional meeting because her cancer was now at a Stage III-A, rather than a Stage I. She would need not only another surgery but most likely both chemotherapy and radiation.

When Jackie went for the results from her second surgery, this time she brought a friend. “I was very grateful for my friend because all of a sudden things at that point just started to not look really good. I really started to worry.”

5 Ways an Advocate Can Help

A serious illness is a journey, requiring many kinds of support at various points along the way. A diagnosis is just the beginning, so be sure to bring someone with you to help absorb the information and identify next steps. Here are five ways that having someone with you can be beneficial during visits with physicians, particularly when reviewing medical test results:

  • Brainstorm before the visit to identify questions.
  • Take notes during the meeting.
  • Prompt you during the meeting, if needed, on items to ask/discuss with doctor.
  • De-brief after meeting with the doctor.
  • Identify next steps to take.

If you don’t have someone who can join you for the doctor’s appointment, use these same points to advocate for yourself more effectively. When meeting with a doctor alone — think of questions ahead of time, write them down, take notes during the meeting, ask for clarifications, and ask the doctor to identify the next steps (which you will write down!)

*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.