Seth Ginsberg

The concept of a “healthcare team” is a familiar one to medical practitioners, but who is the missing link? Beyond physicians and nurses, the patient, of course, should be at the center of all decisions. But the team members who may be missing from the roster: family caregivers.

Often the patient’s family member (spouse or adult child) or a close friend, caregivers volunteer their time to look after the well-being of their loved one. Given their time investment and genuine care for the patient, caregivers offer an important insight into the patient’s true health status and ought to be brought to the forefront of the healthcare decision-making process.

 reports that there are “approximately 43.5 million family caregivers who have provided unpaid care to an adult or child in the last 12 months.” Of these, “15% care for two more or adults.”

Beyond the benefits a person living with arthritis receives from a loved one’s day-to-day practical assistance, studies show that 

 plays a major role in a person’s health.

A Unique Perspective on Arthritis Presentation

Caregivers can go beyond just supporting their loved ones. They may help patients understand and adhere to their treatment plans. They also may help the person with arthritis keep track of appointments; follow nutritional guidelines; and even manage other aspects of life, such as transportation and budgeting.

At appointments, patients may not be as reliable as their practitioners assume. In fact, a study in 

The Primary Care Companion to the Journal of Clinical Psychiatry

may minimize or exaggerate symptoms or avoid key clinical issues

patients with rheumatoid arthritis tend to understate their disease burden

Caregivers, on the other hand, are often keenly aware of the patient’s actual health status. Their familiarity with the patient helps them recognize how the patient is feeling, adhering to treatment plans, and responding to medication. Caregivers often can provide a more accurate source of information because they are motivated to ensure that their loved one’s practitioner has a full picture of the patient’s health status.

Of course, not all patients withhold the truth about their condition during appointments. In those cases, caregivers remain a vital source of support and they can remind their loved one of anything they’ve forgotten to discuss with the healthcare provider.

In addition, with the help of mobile apps like 

, caregivers can help persons with arthritis develop an accurate record of their response to treatment.

Physician-Caregiver Relationships Matter 

Persons with arthritis who rely on a family caregiver for daily support should feel comfortable inviting their loved one into an appointment, and with the appropriate permissions in place, healthcare providers might speak directly to both the patient and the caregiver about treatment options. This is vital if a caregiver is responsible for providing and administering medications or other interventions to the loved one. The caregiver needs to have a clear understanding of the process. Second-hand information from the patient might restrict the caregiver’s ability to ask clarifying questions.

Doctor-patient relationships are frequently discussed as being the foundation of healthcare. Trust and rapport between providers and their patients is certainly important, but that rapport must exist for the caregiver as well.

Having open dialogue and actively including the caregiver in plans allows the practitioner to consider not just the patient but also the person who will be caring for the patient. Confirming that a treatment plan works with the schedule and capabilities of the caregiver guarantees that the patient benefits from its full effects. Respectful, clear communication between doctor and caregiver removes a potential barrier to care.

Communication and inclusion of the caregiver are also important for the caregivers themselves. A practitioner’s assessment of the caregiver-how they are coping, who supports them, how they manage their lives, and what they do for themselves-can be as important as assessment of the patient.

Ensuring that a caregiver can provide for their loved one creates an extra layer of safety and control. Providers also can share resources with caregivers-from tactics on reducing stress to information about online support groups.

Caregivers can be the anchors that hold patients to their treatment plans. By eliminating the need for a home health aide or other service, caretakers 

Practitioners have a responsibility to acknowledge the role of the caregiver in patient care by actively including them in the development of the treatment plan. In doing so, they can ensure safe, reliable, and high-quality care for their patients.

Seth Ginsberg is President and Co-founder of the Global Healthy Living Foundation and 

Articles

They offer insight into patients’ true health status and ought to be at the forefront of healthcare decision making.

Caregivers Are Vital to Arthritis Management

The gap between what physicians believe they communicate and what patients actually take away from those conversations can be wider than the metaphorical gulf of Venus and Mars. The scary part is that miscommunication can carry dire consequences.

Consider an anecdote that was recently shared with the 

 community:  We heard about a patient, whose doctor diagnosed her with rheumatoid arthritis and prescribed methotrexate. During that office visit the doctor told her that she “can’t” get pregnant while taking methotrexate. The patient took her doctor literally and grew lax in her contraceptive use, simply because she was following his orders. But the physician meant “you shouldn’t get pregnant,” not “you can’t get pregnant.” Methotrexate, of course, is known to 

This misunderstanding could have easily been corrected if the doctor checked to ensure that the patient understood everything they had just discussed - especially the really important parts. Of the 23,658 cases that the CRICO insurance program assessed between 2009 and 2013, 30 percent involved communication failures, it noted in its 

 on malpractice risks. In 7,149 cases, that miscommunication harmed patients, and the total losses incurred were $1.7 billion, according to the report.

Most hauntingly, 37 percent of all cases of high-severity injury involved a communication failure. ProPublica notes variations in the reported 

 - perhaps even the third largest killer after heart disease and cancer - but even if one adopts the most conservative numbers, it’s still a huge problem.

One way that doctors can mitigate these enormous risks is to ask the patient to repeat the instructions. “To ensure each patient understands and remembers important information about their treatment, their doctor can ask him or her to describe the plan in their own words, a strategy known as the teach-back method,” an anesthesiologist 

Other communications problems abound as well. “Patients spoke, uninterrupted, an average of 12 seconds after the resident entered the room,” according to 

. “One fourth of the time, residents interrupted patients before they finished speaking.” 

, an associate professor of medicine at New York University, “advises that doctors ask their patients, ‘Is there anything else?’” reports the University of California, Berkeley’s 

. “She acknowledges that this can be daunting for doctors, because it opens a Pandora’s box of dialogue that may cut into other patients’ appointment times.”

A Pandora’s box here is preferable to the alternative, however. Writing in the 

 in 2014, two physicians described a close friend and cancer patient who had gone to see a renowned specialist. “When the friend started asking questions about the treatment plan, the doctor had stopped him mid-sentence, glared at him and said, ‘If you ask one more question, I’ll refuse to treat you,’” they wrote. “‘What could I do?’ the friend later said. ‘He’s the best, and I wanted him to take care of me, so I shut up.’”

There is a need throughout the profession today to be more patient-centric. Rather than telling patients to shut up, physicians ought to be open to listening more and having dialogues rather than one-way lectures.

“Physicians and medical students often have limited insight into how they come across when talking with patients, and little opportunity for formal feedback,” they wrote. “While most doctors really are invested in their patients making the right decisions for their circumstances, many lack the skills to show that they care. After all, their admission to medical school was not based on a validated assessment of their ability to relate to other human beings.”

The good news is that the problem increasingly surfaces on the radar screens of doctors and other medical professionals. There are a variety of creative efforts underway to improve physician-patient communication. But the example of the doctor informing a patient that she “can’t” - rather than “should not” or “must not” - get pregnant while taking methotrexate underscores the work that remains ahead of us.

Seth Ginsberg is president and co-founder of the Global Healthy Living Foundation and 

The nuances of word choice in a doctor’s office may hold greater meaning than you think.

Say what? When Miscommunication Means Life or Death

Rheumatologists would agree that treating patients in the real world is much more involved and complicated than the rheumatology fellow curriculum could possibly relay. That’s not a criticism of the curriculum, but rather an acknowledgement that over time, rheumatologists gain the experience and skills necessary to help their patients cope with their concerns.

However, unless a rheumatology fellow also has a rheumatic condition, fellows may lack the skills necessary to treat the whole person who is almost always dramatically more complicated than any text book case study could convey. Until a rheumatologist learns how to help the patient - clinically, emotionally and even financially - they will struggle with treating patients. 

Clinical and scientific curricula are critical components of rheumatology training. An experienced rheumatologist understands more than just the facts and numbers, they understand the complexities of disease and how these intersect with each patient. Learning about and understanding the interface between science and the patient experience is clearly no easy task given the variety of rheumatic conditions, the likelihood of co-morbidities, diseases that mimic rheumatic conditions, diverse populations and the complexities of the treatment landscape. Education on these issues comes not from a textbook, but from experience and good mentorship. 

The Real World Challenge #1:  Patient-Centered Care

Patients want their rheumatologist to be specialists in the field, but they also want them to understand their particular day-to-day challenges, including the pharmacological and alternative treatments to fit their lifestyle. Further, physicians need the ability to communicate this information effectively and in a culturally-sensitive manner.

In the real world, while the patients are not medical experts, they should be regarded as the experts in their care. They are the only ones capable of explaining how they feel and they should have the final say in whether the treatment is improving their quality of life. If a certain treatment plan is not meeting their expectations, the fellow needs to work with the patient to discuss the pros and cons of continuing with the treatment plan or to explore a new treatment option. Going right to drugs might be a sound scientific approach, but virtually all patients have an interest in exploring complimentary, adjunct approaches such as diet, exercise, mindfulness and other integrated medicine techniques. Some of these approaches have more evidence than others, but knowing that patients have a deep and real interest in exhausting all avenues of disease management means there’s much more to treatment than a prescription for a drug.

The Real World Challenge #2:  Navigating Insurance

Unfortunately, because this is the real world, life gets even more complicated. Healthcare has become a political hotbed and with each election, the rules and regulations change. Having a treatment plan in mind that may work for the patient, doesn’t mean the patient’s insurance will offer appropriate coverage or even at a cost the patient can afford. Helping patients navigate their healthcare plan is a daunting challenge that may require the practice hire an expert who can manage the system for the practice and patient.

"Be sensitive to the fact that financial issues, especially out-of-pocket costs, consistently rank number one on the list of reasons why patients aren’t adherent to medications. Clinical trials are predicated on regular adherence to medicine. Skipping doses due to financial reasons haven’t been factored into the drug label, but it should be considered during your consultations and follow-ups."

Rheumatologists must become adept at helping patients access treatments and deal with related stress. Obstacles, such as increased out-of-pocket expenses and utilization management techniques, are likely to get in the way of what you and your patient agree is the best path forward. Be sensitive to the fact that financial issues, especially out-of-pocket costs, consistently rank number one on the list of reasons why patients aren’t adherent to medications. If the co-pay is very high, they may take matters into their own hands and begin skipping doses or rationing their own care. Clinical trials are predicated on regular adherence to medicine. Skipping doses due to financial reasons haven’t been factored into the drug label, but it should be considered during your consultations and follow-ups.

The Real World Challenge #3:  Listening and Interpersonal Relationship Skills

Patients are human. They are the result of their upbringing, their genetics, their emotions, their culture, and their worldview. There can never be a ‘one size fits all’ mentality. At the same time, to avoid getting stuck in the weeds, fellows need to treat patients based on the common understanding of their population. This requires incredible listening and interpersonal relationship skills. Often communication breakdowns directly result from a lack of understanding of one another’s worldview. The decisions patients make reflect their cultural values so being aware of one’s own biases assists the healthcare provider in understanding the background influencers from both the patient and themselves (Hays & Erford, 2014).

Patients look to their healthcare providers to recommend proper resources for support groups, potential research studies in which to participate (or follow), reputable websites for educational purposes on medications, alternative treatments and healthcare coverage plans. 

In conclusion, fellows bring a wealth of knowledge and enthusiasm to their patients. They will become great clinicians as they merge their classroom knowledge with real world experience.

Seth Ginsberg is president and co-founder of the 

Why don’t we listen better? Communicating & connecting in relationships.

 ed.). Portland, OR: Petersen Publications.

Developing multicultural counseling competence: A systems approach. 

 ed.). Boston, MA: Pearson Education, Inc. 

Here are some real-world challenges for rheumatology fellows by CreakyJoints.org.

What Rheumatology Fellows Wish They Could Learn

It would seem that almost every question imaginable has an answer now that Google is in everyone’s pocket.

We pull out our smart phones when debating who actually guest starred on a 1996 episode of Friends or how to make a killer chili on a Sunday afternoon. It’s easy for a patient diagnosed with a serious, chronic disease, like autoimmune arthritis, to read an unlimited amount of information online about their illness. And, unlike an infinite number of chili recipes, you can have too much of a good thing. Online information overload is real. Patients seeking answers and direction for disease management can easily get overwhelmed with information.  [[{"type":"media","view_mode":"media_crop","fid":"50166","attributes":{"alt":"","class":"media-image media-image-right","id":"media_crop_9937572121020","media_crop_h":"298","media_crop_image_style":"-1","media_crop_instance":"6634","media_crop_rotate":"0","media_crop_scale_h":"0","media_crop_scale_w":"0","media_crop_w":"216","media_crop_x":"31","media_crop_y":"4","style":"font-size: 13.008px; line-height: 1.538em; float: right;","title":"Seth Ginsberg","typeof":"foaf:Image"}}]]

While arming oneself with knowledge seems like a smart idea, it comes with its share of pitfalls. “Dr. Google” can improperly influence an individual toward a specific treatment plan. With a myriad of treatments and management strategies available for each patient, rheumatologists should be prepared to guide their patients to credible online medical sources.

I cannot underscore enough the importance of reviewing with your patients, the pros and cons of relying on the internet for medical information. Today, even older populations rely on the internet for information. Researchers have found that over two-thirds of baby boomers use the internet regularly and with 76 million boomers in the U.S., this trend will continue.

The number of online medical resources and communities is staggering and without proper guidance, patients surf through websites with no real way to decifer credible information. Physicians should be prepared to direct their patients to credible online sources. Without some guidance, patients may wind up overwhelmed and confused.

Undocumented or non-researched information is pervasive online. One recent study found that of 85 websites about gout, more than 50% were found to offer no information of value or erroneous information. Furthermore, 68% were labeled challenging to read or comprehend.

Information overload is the next biggest pitfall. Patients who Google prescribed or recommended treatments may come away with a skewed view of the drug’s risks or side effects without fully comprehending their personal level of risk. Drug package inserts and product websites are written for the general population. Without guidance, a Google search may confuse the patient further.

Patients are Googling to seek information about their doctors. They seek out websites that list a doctor’s specialty and education, but often also rate them and allow patients to comment on their experience. Remind your patients that everyone has a different treatment journey and that comparing experiences may not offer real benefit.

For patients, there may be benefits in reviewing their doctor’s research or writings online. The more the patient can learn about their doctor, the more confident they may be in selecting a doctor- which can be a step toward building a strong patient-to-doctor relationship. And, just as doctors are being searched by patients, doctors might want to consider Googling themselves to see what their patients are saying.

Online support communities are not one in the same. Some communities focus on a specific arthritis diagnosis, while others are broader and speak to life with arthritis. Communities such as CreakyJoints, have a broader appeal for patients. We offer support, education and information participating in clinical research.

The internet has changed the way we seek and process information. Rheumatologists can strengthen their relationships with patients by guiding their patients to credible information sources.

Seth Ginsberg is president and co-founder of the 

Healthcare marketers: Don’t forget about the baby boomers

“The patient, the physician, and Dr. Google.”

. May 2012, Volume 14, Number 5 :398-402.

Jimenez-Linan, L. M., Edwards, L., Abiheshek, A., Doherty, M. 

“Online patient information resources on gout provide inadequate information and minimal emphasis on potentially curative urate lowering treatment,”

Medical misinformation is abundant online. The president and co-founder of the Global Healthy Living Foundation and CreakyJoints offers rheumatologists some tips with Dr. Google.

Author | Seth Ginsberg

Articles

Caregivers Are Vital to Arthritis Management

Say what? When Miscommunication Means Life or Death

What Rheumatology Fellows Wish They Could Learn

Rheumatologist vs Dr. Google: Battling Misinformation