The Work of Being a Patient

(Photo credit: Dana Tentis @Pexels)

I recently published a piece on the many tasks we require of our patients. This is something I’ve thought about a lot recently in my own clinical practice, as I’ve watched how many of my older patients struggle with the healthcare system. To summarize:

  • The “work” of being a patient (known as treatment burden) is different from the burden of a disease itself. Treatment burden includes traveling to medical visits, undergoing testing, dealing with insurance companies, reconciling different specialist recommendations, adhering to dietary restrictions, etc.;
  • Treatment burden is highest among older patients with multiple medical problems, who paradoxically have some of the greatest challenges to completing these tasks;
  • The concept of minimally disruptive medicine aims to minimize treatment burden while maximizing health outcomes that matter to patients. Telemedicine is one component of minimally disruptive medicine, but for many older patients it’s far from a panacea;
  • There is currently no way to incentivize doctors for minimizing treatment burden, although intuitively it’s a laudable goal.

The high treatment burden in our older patients is a problem without a straightforward fix, but I think the first step is raising awareness about the issue. And as I become more aware of treatment burden, I take small steps to minimize it in my own practice, whether that means coordinating patients’ testing on the same day they see me, or reaching out to other specialists so we’re all on the same page about the care plan. This is far from a solution, but at least it’s a start.

John Dodson is a Cardiologist and Associate Professor at NYU Grossman School of Medicine.

NSTEMI Decide: A Decision Aid for Older Adults

Many patients hospitalized with non ST-elevation myocardial infarction (NSTEMI) are over age 75. This condition requires major management decisions – most importantly, whether to pursue invasive coronary angiography. However there is limited evidence about the absolute benefits of this procedure for NSTEMI in older adults; available data indicate certain advantages (reduced risk of another MI) but also risks (bleeding, acute kidney injury). Until ongoing trials provide better evidence, patients and clinicians are left with uncertainty around whether invasive coronary angiography is worth pursuing.

Our previous qualitative research revealed that for many older adults hospitalized with NSTEMI, they expressed a desire to be better informed about their options. In the same study, cardiologists asked for a tool that would help them facilitate discussions with these patients. And both groups endorsed the process of shared decision making, which involves the active participation of patients in health care decisions that have multiple acceptable choices.

In this context, we undertook an iterative process to develop a decision aid for invasive coronary angiography in older adults with NSTEMI. We convened both clinical experts (cardiologists, geriatricians, internists, nurses) and patients, in order to review serial drafts of this decision aid for accuracy and comprehension. Our development methods are now published and freely available on medRxiv.

We adapted the final decision aid, NSTEMI Decide, to a mobile health app to maximize ease of use in clinical settings. This can currently be found in Apple’s App Store and downloaded for use on iPhone or iPad (an Android version is also under development). The app is eleven pages long and can be used in English or Spanish. We used data from available trials to provide estimates of the benefits and risks of cardiac catheterization, and created visual representations (with patient input) to help make the provided estimates understandable.

Sample screenshots from NSTEMI Decide.

To our knowledge, this is the first decision aid developed for NSTEMI in older adults. We are currently studying this decision aid prospectively to evaluate feasibility of use in practice, and how it influences patients’ medical knowledge and feelings of self-efficacy. Our hope is that NSTEMI Decide may eventually be widely disseminated to help patients and clinicians better navigate care decisions together.

Sophie Montgomery is a 2nd year medical student at NYU Grossman School of Medicine.

John Dodson is a Cardiologist and Associate Professor at NYU Grossman School of Medicine.

 

Patient Priorities Care: State of the Art

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The Journal of the American Geriatrics Society published 3 related articles on redesigning healthcare around patient priorities, which I’ve linked to below. This work represents the leading edge of incorporating patient priorities into decision making for older adults. The rationale (previously discussed on this blog here, here, and here) is that for many older adults, the applicability of disease-specific guidelines are unclear; many of our therapies (in cardiology and elsewhere) were studied in relatively young patients with few comorbidities. In the setting of limited evidence, the concept of patient priorities care therefore emphasizes eliciting what matters most to patients – and designing care plans around specific, actionable goals.

Patient priorities care in practice is complex since it requires training of clinicians and support staff, engagement of patients, and streamlining of health information technology, all within our current time-limited healthcare environment. Nonetheless, the pilot studies by Naik et al. and Blaum et al. demonstrate that this care model can be effectively implemented in practice. The accompanying editorial by Applegate et al., which states that “Clinical guidelines could be revised to integrate the tradeoffs between multimorbidity, functional status, and polypharmacy in making management decisions” represents a longstanding principle of geriatrics which appears to be gaining traction in other fields (including cardiology).

Links below:
Naik et al., “Development of a Clinically-Feasible Process for Identifying Patient Health Priorities.”

Blaum et al., “Feasibility of Implementing Patient Priorities Care for Patients with Multiple Chronic Conditions.”

Applegate et al. “Implementing ‘Patient-Centered Care’: A Revolutionary Change in Health Care Delivery.”

 

By: John Dodson, MD, MPH

Hearing Loss and Heart Failure

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At first glance, hearing impairment and heart disease seem to have very little in common. However, the relationship has been hypothesized since the 1960’s, and more recently has been established in epidemiologic studies – with a particular emphasis on heart failure. For example, a recent study by Sterling et al. examined patients in the cross-sectional NHANES Survey aged ≥70 years with a diagnosis of heart failure. The authors described the percentage with quantifiable hearing loss based on pure-tone audiometry (considered the gold standard test).

The main findings: 74% of patients with heart failure had some degree of hearing loss, which was significantly higher than those without heart failure (63%). Further, only 16% of heart failure patients wore hearing aids. Thus there was a disconnect between the burden of hearing loss, and use of a strategy (hearing aids) with proven effectiveness.

Why does this matter? According to the authors: “since patients with HF [heart failure] are frequently in noisy hospitals and clinics where they receive myriad instructions about disease management, it seems likely that untreated hearing loss could impair patient-physician communication and ultimately HF self-care.” After my recent two weeks attending on the inpatient cardiology service, I concur. We are constantly expecting our patients to provide us an accurate history, comprehend diagnostic test results, and adhere to discharge plans, all of which may be affected by hearing impairment.

What are the solutions? The first is to increase identification of hearing impairment through screening – and with advances in technology, I’d predict this can soon be easily done at the bedside with portable electronic devices. The second is to make hearing aids more accessible, including over-the-counter purchases – and recently there has been some notable advocacy work advancing laws to increase access. Through these two simple strategies, we may be able to make meaningful improvements in the health of our older cardiac patients.

Compassion in Medicine

cherylThe aging hearts of our loved ones are multifaceted for sure. Kind, funny, witty, intelligent, brave, accomplished, and if we’re lucky, loving with a lifetime of experiences all wrapped up into a well-lived life. Certainly a life deserving of respect, all the best medical care, compassion, understanding, and help to navigate this final stretch of the journey.

My mother was fiercely private concerning her medical care.  She did not want anyone, other than my father, to know what doctors she was seeing and why.  When it became obvious to my (physician) husband and I that her condition was deteriorating, stepping in became a delicate balancing act.

My final journey with my mother began over two years ago when I noticed she was exhausted much of the time and her breathing was labored.  My husband spoke to me about his concern in private, knowing to tread lightly.  Whenever either of us asked her how she was doing, and expressed concern, she very firmly stated that nothing was wrong.

When she began having difficulty with memory and recall, she reluctantly agreed to see a neurologist friend of ours.  After testing, he concluded she was experiencing normal progression in aging. Her energy level, however, continued to decline.  She assured us again that she was fine and was seeing a cardiologist for chronic A-Fib, which my father confirmed.

A few months later she ended up in the local emergency room, the result of a fall. Although her cardiologist had an office in the same hospital, we discovered that his records were not linked to the hospital system.  Consequently, the ER doctor, not having the cardiologist’s records on my mother, took her off blood thinners because she felt the risk of injury from fall was greater than the benefit of my mother remaining on her medication.  This likely contributed to the further significant decline of my mother’s condition.  When my husband discovered her medication had been stopped he had my father call their cardiologist immediately to correct. We encouraged my father from that point on to keep a physical copy of their medical records with him for every future trip to the hospital and doctor’s office.  Unfortunately, not every patient has the luxury of having a physician in the family.

Sadly the other effect (we assumed of the fall) was significant cognitive impairment. When re-examined by her neurologist, she had declined drastically. He secured and poured through all of her medical records.  He found she had been diagnosed with mitral stenosis and severe pulmonary hypertension years before which were contributing to her confusion.

Together, my father and I decided that I would be included in Mother’s next cardiologist appointment.  Given her condition I stated at that visit that we would like her to see an Interventional Cardiologist.  I’ll admit I was a bit skeptical before meeting this new doctor, as all we were offered to this point was monitoring.  When Dr. K walked in, he was extremely welcoming and respectful and had actually taken the time to read Mother’s chart before meeting with us—this was a first!  He was very kind and honest from the start.  He told us she actually had Rheumatic Mitral Stenosis and that he could offer a procedure called valvoplasty.  This procedure could potentially give my mother great quality of life for her remaining years.

Being a teacher, I appreciated his unique ability to explain this complex diagnosis and procedure in terms my parents and I could understand.  And, he took as much time as we needed to feel comfortable with the next step.  Dr. K had given us so many gifts that first day.  His world-renowned expertise, his genuine kindness and caring, gave us hope for the first time in years.  He also gave us his cell phone number in case we had any questions or concerns.

Although blood clots ultimately prevented my mother from receiving this procedure, Dr. K’s care did not end there. He took time out of his busy schedule to meet with our family and discuss how best to care for Mother. He set into action Home Healthcare, having a nurse perform home visits and enabling him to monitor her INR. He even discussed (in person, by phone, or by text) when to get Hospice involved, end-of-life decisions, and what my father could expect every step of the way.

Everything Dr. K did enabled my mother to have the best quality of life possible, to live out her final days as she wanted to.  My mother was a woman of deep faith. She was not afraid of dying. Quite the opposite, she knew Heaven was her ultimate destination. It was her wish to remain in her home, and she did.  She was able to live out her final days in the home she loved, with the people she loved, and in her words, “with the best husband I ever could have asked for” for all but her final six hours.

When Dr. K learned of my mother’s passing, he asked to meet with my father and myself.  When we met we were yet again amazed. His mission was to share a cappuccino and make sure we were doing all right.  Talk about a lesson in compassion… I feel it is worth mentioning that although Dr. K was the newest cardiologist on my mother’s case, he was the only doctor to follow us through her death.

Lessons learned on the journey:

  1.  The best way to preserve a loved one’s dignity is to be their advocate.
  2.  Always be respectful but get involved as needed.  Get referrals, go to appointments, ask the difficult questions so your loved one has all the information necessary to make their decision.
  3.  I always knew and respected the fact that the final medical care decision would be my mother’s and father’s to make.  Even if the decision was no further procedure.
  4. My role was to connect my loved ones to the best possible medical specialists.
  5.  There simply are no words to adequately thank someone for giving you more quality time with your loved one.  I am eternally grateful to Dr. K and the other doctors on my journey who truly care for their patients and families.

 

By: Cheryl Csorba