Letting Go When People Let Go of Their Lives

dodson%20headshotMy 83-year-old patient had outlived peoples’ expectations on several occasions. Faced with a critical illness three years ago, she underwent emergency surgery and spent several months in the hospital with a series of complications, including septic shock, renal failure, and hospital-acquired pneumonia.

I’d seen her in the office for a new visit soon after she was discharged. It took nearly 20 minutes to go through her history before walking into the exam room. Notes from several doctors during that hospitalization said that she might never become well enough to be discharged home. When I finally walked into the room, I expected to see someone frail, debilitated, with a caregiver answering most of my inquiries. Instead, she appeared robust, completely alert, and cheerfully answered my questions herself. “You look better than your chart,” I told her, truthfully.

Given the extent of her recent workup, we agreed to keep further testing and medication changes to a minimum. I established that we’d touch base in the office every three to four months — a typical interval at her age.

And somewhat to my surprise, over the next several years she maintained her independence, as well as her cheerful demeanor. While she did experience some setbacks — a hospitalization for pneumonia, or mild volume overload — she usually made it home within a week.

The last time I saw her in clinic was different. She had been hospitalized for nearly a month, with a series of problems including a declining ejection fraction, rising creatinine, and multiple infections. In my interview, she looked more fatigued and responded only in brief sentences. She had lost considerable weight and had difficulty walking. I knew from a growing body of research that these last two findings were very poor prognostically in her condition.

In this context, I suggested initiating home hospice. I explained that this would provide her with a visiting nurse, medications to alleviate her symptoms, and a general focus on keeping her out of the hospital. I also explained that I expected her survival to be less than six months. After a lengthy discussion with my patient and her caregiver, she agreed.

The following week, the hospice nurse visited her at home for an intake visit, and she sent them away.

This experience is not unique. Studies show that some patients with advanced illness are unwilling to use hospice. Further, even among those who initially agree, many reverse the decision when their condition worsens. A paper earlier this year by Russell and colleagues found that 30% of patients with heart failure on home hospice in New York City ultimately canceled hospice, most often because of worsening symptoms that led to an acute hospitalization. This process, termed “live discharge from hospice,” is over twice as common with heart failure compared with cancer.

The phenomenon may stem, in part, from the “peaks and valleys” characteristic of advanced heart failure, which stand in contrast to the slow progressive decline of metastatic cancer or dementia. Heart failure patients can experience dramatic improvement with a short course of intravenous diuretics — which relieve symptoms without influencing the long-term disease course.

And perhaps my patient was not ready to let go of the hope that this time, like many times in the past, she would improve. As her cardiologist, I also had to let go of my own notions about what was best in her condition. While my clinical experience informed me that her prognosis was poor, this was ultimately her decision to make.

Within one month, my patient was admitted again to the hospital with shortness of breath and was found to have progressive heart and renal failure. I was away at the time.

The inpatient team and her indefatigable primary care physician had multiple discussions with my patient and her (also indefatigable) caregiver about her condition.

They set expectations, given what was known about her disease, and she set dual goals of symptom relief and avoiding another hospitalization. After one week in the hospital, she was referred home with hospice, and this time she did not send them away when they visited. She was ready. Several days later, she passed away, supported, at home.

 

By: John Dodson, MD

This post can also be seen on KevinMD.com here

Identifying the Gaps: Sex Differences in the Care of Older Adults Presenting with Acute MI

Michael Nanna MDSex differences between younger men and women presenting with acute myocardial infarction (AMI) have been recognized for decades. Whether sex differences persist among older adults (≥75 years old) with AMI, including in their relative burden of functional impairments, has not been adequately studied in a contemporary older adult population. Given this uncertainty, we set out to assess sex-based differences in presentation characteristics, functional impairments, in-hospital treatments and complications, in older adults ≥75 years presenting with AMI from the SILVER-AMI study. We recently published our findings in Circulation: Cardiovascular Quality and Outcomes. Some key highlights:

  • Among 3041 participants in SILVER-AMI, women and men differed across many baseline and presentation characteristics. Women had lower rates of prior coronary disease and, among those with non-ST-segment-elevation MI (NSTEMI), reported chest pain as their primary symptom less often than men (50.0% vs. 58.6%).
  • Older women with AMI had higher rates of age-associated functional impairments at baseline than men, including higher rates of cognitive impairment (NSTEMI: 20.6% versus 14.3%; STEMI: 20.6% versus 12.4%), impaired functional mobility (NSTEMI: 44.5% vs. 30.7%; STEMI: 39.4% vs. 22.0%) and disability with activities of daily living (NSTEMI: 19.7% vs. 11.4%; STEMI: 14.8% vs. 6.4%).
  • Women had lower rates of obstructive coronary disease and underwent less revascularization than their male counterparts in both the ST-segment-elevation MI (STEMI) and NSTEMI groups.
  • Bleeding complications were more frequent among women with STEMI (26.2% vs. 15.6%), driven primarily by higher rates of nonmajor bleeding (20.4% vs. 11.5%) and bleeding following percutaneous coronary intervention (PCI) (22.6% vs. 14.8%) among women.

The higher rates of functional impairment among older women identified here underscore the importance of assessing all hospitalized patients for impairments associated with aging, with an especially high index of suspicion when caring for older women with AMI. Improved diagnosis can help guide interventions to optimize mobility, adherence, and prevent falls.

Higher bleeding rates seen in older adult women with STEMI suggest that bleeding prevention strategies must be emphasized in this population, especially in those undergoing PCI. This represents an important future area for quality improvement efforts.

Recognition is the first step towards closing these gaps in AMI care. While substantial efforts are being made to reduce sex differences in care across the age spectrum, some of the more geriatric-specific issues identified here must be considered as we meet these challenges going forward.

 

By: Michael Nanna, MD

Dr. Nanna is a Cardiovascular Disease Fellow at Duke University School of Medicine. 

Utilization Frailty: a New Approach

 

Frailty, a disorder of impaired recovery after illness, is closely linked to mortality, but is not accounted for by many large-scale risk adjustment metrics since rigorous measurement of frailty can be time-intensive.  Thus, it is unclear if failure to account for frailty in risk adjustment methods results in undue penalties for hospitals taking care of large numbers of frail individuals.

In a retrospective cohort analysis of 785,127 Medicare Fee-for-Service beneficiaries, Kundi et al. used a claims-based frailty index – known as the Hospital Frailty Risk Score (HFRS) –to overcome the problem of time-intensive frailty measurement. The HFRS is a frailty index tied to clusters of resource utilization developed in a British population and subsequently externally validated in a Canadian population. The HFRS was created to further define patients at risk for poor outcomes by evaluating which administrative billing codes best identify individuals with prolonged hospital stay, increased rates of readmission, and increased rates of mortality.  These billing codes were then tallied to categorize patients into 3 risk groups including low (<5), intermediate (5-15), and high (>15) risk.  The HFRS has subsequently been associated with increased mortality after transcatheter aortic valve replacement (TAVR) within the United States.

In the current study, Kundi et al. found that including the HFRS in the risk adjustment model used to calculate risk-standardized 30-day readmission rates (RSRSs) for acute myocardial infarction, heart failure, and pneumonia hospitalizations improved prediction of 30-day readmission and short-term mortality compared to use of clinical comorbidities alone.  Across all 3 conditions, addition of the HFRS resulted in a statistically significant (p < 0.001) improvement in prediction of 30-day readmission and short-term mortality after adjusting for age, sex, race, and other comorbidities. These results imply that hospitals caring for high numbers of frail individuals may be disproportionately penalized for the quality of care delivered if frailty is not considered in risk adjustment algorithms, including the one used by the Centers for Medicare and Medicaid Services (CMS).

Notably, frailty as defined by the HFRS only moderately correlates with two common definitions used by Fried and Rockwood. The HFRS defines frailty according to clusters of increased health resource utilization and adverse outcomes, so-called “utilization frailty,” and thus represents a distinct definition that may correlate only moderately with “syndromic frailty.”  Nevertheless, as this and other papers suggest, this definition identifies a higher risk subpopulation that is relevant to both clinical risk prediction and high healthcare utilization. This classification of frailty is increasingly important as the Medicare population continues to age and hospitals seek to tailor their post-discharge care for these high utilizing individuals.

In summary, the recent publication by Kundi et al. highlights the importance of risk adjustment for “utilization frailty” when assessing risk of short-term readmission and mortality after hospitalizations for three common acute medical conditions.  As detailed in the study, the HFRS could be used to identify and create care plans for patients that are high risk for readmission and mortality. Future research is needed to identify if hospitals that take care of higher numbers of frail patients are disproportionality penalized under the Hospital Readmissions Reduction Program (HRRP). In addition, the role of hospital-based interventions for high-risk frail patients to prevent adverse post-acute care outcomes warrants further inquiry.

By: Lila M Martin, MD, MPH; Jordan B Strom, MD, MSc, FACC, FASE

 

 

 

Putting Older Patients First

hospital bed

Image from Pixabay

Recently, Dr. Leonore Buckley published a commentary in JAMA on witnessing her brother’s hospitalization and subsequent decline. As a physician and caregiver, she provided a unique perspective on the disjointed, often alienating process of being a hospitalized patient in contemporary medicine.

Most physicians or nurses who have recently worked on an inpatient unit have witnessed this phenomenon. Dr. Buckley outlines some of the challenges in the care of her brother, Tom:

  1. Unclear responsibility. It was unclear to Dr. Buckley who was ultimately responsible for Tom’s care – a single point person whom she could approach with questions. She states: “the medical teams came and went with rotating attendings we never really got to know.”
  2. Iatrogenesis. Tom developed a secondary infection after receiving antibiotics, anasarca after receiving intravenous fluids, and delirium after being in an unfamiliar environment for several days. Older patients are particularly prone to such adverse consequences of hospitalization; for example by one estimate, up to one in three experience delirium.
  3. Immobility. Physical therapy was available only sporadically, and Tom deteriorated in part due to lack of movement. This is all too common in hospitals, with therapists often unavailable on weekends, and stretched thin during the weekday.
  4. Lack of patient-centeredness. Dr. Buckley reports that she felt like she “was standing in front of an express train of technology” that couldn’t be stopped. As one example – Tom went to dialysis in a windowless room from 4-8 PM most evenings, therefore missing dinner. Exhausted afterwards, he refused to eat. Other details as well – the continuous alarms that disrupt sleep, the lack of privacy – are all too familiar.

Dr. Buckley does credit the physicians and nurses with being well-trained and providing well-intentioned care. And in my opinion, individual clinicians don’t deserve blame for this – the problem is one of a healthcare system built for maximum efficiency that, somewhere through the process of adapting quality metrics, discharges before noon, and the latest in advanced monitoring technology, lost sight of what matters most – an individual person, sick and often bewildered, who needs other human beings to help them recover.

This is a complex problem without a single solution, but there is progress on many fronts. For example, the John A. Hartford Foundation has identified  “age-friendly health systems” as a priority area and is working with organizations to achieve several aims, including aligning care with older patients’ specific health goals, implementing delirium prevention strategies, and ensuring mobilization on a daily basis. Medical centers such as Johns Hopkins are piloting rehabilitation programs in critically ill patients, mobilizing them early in their disease course to avoid functional decline.

Such efforts are laudable. And, as the number of Americans age ≥85 is expected to triple over the next three decades, they are essential to a future healthcare system that puts patients first.

 

By: John Dodson, MD, MPH

dodson%20headshot

Understanding the Peaks and Valleys: Why Do Patients with Heart Failure Leave Hospice?

David Russell Headshot Cropped.pngHospices provide palliative and supportive services to people who are nearing the end of life. More people in the U.S. are using hospice than ever before—recent data indicate that half of those with Medicare insurance who died in 2017 used hospice. Hospices are also serving a more diverse population and reaching people with a range of diseases, including heart failure. While this is encouraging news, patients with heart failure face unique challenges in hospice. Because of difficulties in making accurate prognosis estimates, many patients with heart failure are referred to hospice too early or late in the disease process. Also, heart failure causes sudden changes in physical functioning and symptoms that can be difficult to manage at home. These difficulties can make it more likely that patients with heart failure end up leaving hospice prior to death, an event that is also known as “live discharge.”

A study that we recently published in JACC: Heart Failure found that 30% of patients with heart failure experience a live discharge from hospice. We found that this occurs much more frequently in heart failure compared to other diseases like cancer and stroke. Live discharge can happen for several reasons, including unanticipated medical events that lead to hospitalization, decisions by patients and their families to pursue disease-directed treatments that are not allowed under hospice regulations (“elective revocation”), leaving the hospice’s service area, or having an extended prognosis beyond the six-month eligibility window.

Which heart failure patients are more likely to leave hospice before death–“live discharge”?

Data that we gathered from a large population of patients in New York City allowed us to explore factors that were linked with live discharge from hospice:

  • Younger patients between the ages of 18 and 74 are more likely to leave hospice because of hospitalizations or elective revocations.
  • Patients from underrepresented racial/ethnic backgrounds, including black and Hispanic patients, are more than twice as likely to leave hospice because of hospitalization.
  • Higher functioning patients who are more mobile and less reliant on assistance, measured by scores of 50-70% on the Palliative Performance Scale, are more likely to experience live discharge.

What do hospice nurses and other team members think about the experiences of patients with heart failure?

We talked to interdisciplinary team members at a large hospice agency, including nurses and physicians, to understand more about what patients with heart failure experience when they enroll in hospice. Some of the key issues they discussed were:

  • The unique experience of patients with heart failure—rapid changes in symptoms are common and many patients have complex medication regimens and medical devices like defibrillators that require special care.
  • The limited understanding that many patients have of hospice and their disease—many patients lack a clear sense of what hospice is and its philosophy, or are less prepared and ready to face the end of life.
  • The importance of patients’ social and family context—factors such as education, religion, language, social support, and family dynamics were all cited as playing an important role in the experience of patients with heart failure in hospice.

What does this all mean?

We need to pay closer attention to the experiences of patients with heart failure in hospice—to identify ways to help patients stay comfortable at home and prevent avoidable hospitalizations. Providing cardiac-specific training to hospice teams and caregivers may be instrumental in keeping patients with heart failure continuously enrolled in hospice. Also, efforts to raise awareness about hospice goals of care may also help with reducing barriers to palliative care.

By: David Russell, PhD

Dr. Russell is a Research Scientist in the Center for Home Care Policy & Research at the Visiting Nurse Service of New York and an Assistant Professor of Sociology at Appalachian State University.