aginghearts Latest, Patient Priorities Care

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.

aginghearts Emergency Medicine, palliative care, Patient Priorities Care, Research, Shared Decision Making

Palliative Care in the Emergency Department

Ask any older adult about their preferences foUNC Headshotr end-of-life care, and the majority of them will tell you that they would prefer to die at home rather than in a hospital. Unfortunately, this desire is often not fulfilled.

The population in the United States is aging; by 2030, 1 in 5 Americans will be over age 65. This shift in demographics has already had a significant impact on healthcare utilization, particularly in regard to emergency medical services. Not only do older adults visit the emergency department (ED) at higher rates than younger patients, but they are also more likely to be admitted and experience longer stays.

These trends are especially prominent near the end of life, with half of older adults visiting the ED within the last month of life. For those older patients who are discharged home from the ED, repeat visits are common. This often results in a vicious cycle in which older patients are repeatedly discharged home from the ED, only to return within a few months, often for the same diagnosis that brought them to the ED in the first place. Notably, there are few safeguards in place to reduce recurrent ED visits.

With the passage of the Affordable Care Act in 2010 came the Hospital Readmission Reduction Program, which allowed Medicare to reduce payments to hospitals with excessive readmission rates. As a result, hospitals created programs to reduce readmissions, such as arranging for outpatient follow-up before discharge. However, such initiatives are only available to patients who are admitted to inpatient services and do not exist for patients who are discharged home from the ED. Thus, the ED represents a pivotal point in which clinicians can intervene to improve end-of-life care and reduce recurrent ED visits among older adult patients with advanced illnesses. The question then becomes: what should those interventions be?

Utilizing the ED as a means to enroll patients in palliative care programs represents a paradigm shift that may support older adults with advanced illness and repeat ED presentations. Palliative care is a rapidly growing field that is designed to provide supplementary care to patients with serious, life-limiting illnesses by providing medical, social, and emotional support to patients and their caregivers. Importantly, palliative care does not depend on prognosis and may be delivered in conjunction with life-prolonging treatment.

Multiple studies have shown that palliative care improves quality of life among patients and their families, lessens symptom burden, reduces future ED visits, and helps patients achieve their end-of-life goals (as evidenced here and here). Further, when the American Board of Emergency Medicine officially recognized palliative medicine as a subspecialty in 2006, palliative care found a new role within the ED. As a result, there has been a surge of research regarding the benefits and feasibility of palliative care in the ED, as well as the best ways to design programs and educate providers.

Although the benefits have been well established, there are also significant barriers to implementing palliative care in the ED. Patients in the ED, particularly those in need of palliative care services, are often distressed and may not be receptive to discussions regarding end-of-life care. Additionally, some ED physicians may feel that palliative care is outside the scope of their practice. Others worry that the chaotic environment in the ED is not conducive to meaningful end-of-life care discussions, and that implementing palliative care in the ED may significantly impact wait times.

In spite of these barriers, frequent repeated ED visits are likely to become more common with the aging U.S. population, and initiating palliative care in the ED has the potential to improve care for older adults in several ways: by decreasing repeat ED visits, improving quality of life, and helping patients achieve their end-of-life goals. Future implementation science efforts may help to identify optimal strategies to deliver palliative care in the fast-moving and often disruptive ED environment.

 

By: Julia Allison Brickey
Julia Allison Brickey is a medical student at the University of North Carolina School of Medicine.

 

 

aginghearts Hospice, Patient Priorities Care

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. 

aginghearts Patient Caregiver, Patient Priorities Care

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

aginghearts heart failure, Patient Priorities Care

The Domain Management Approach for Holistic and Patient-Centered Care of Older Adults with HFpEF

parag_officialOur recent Council review paper from the American College of Cardiology Geriatric Cardiology Section Leadership Council enumerated the potential role for a multi-domain approach to caring for older adults with heart failure.  As shown in the proposed Domain Management approach to heart failure, domains including medical, mind and emotion, function, and social environment should be routinely considered when caring for older adults with heart failure.

While this Domain Management approach is applicable to any type of heart failure, it is especially relevant when caring for individuals with heart failure with preserved ejection fraction (HFpEF), a subtype that comprises 50% of heart failure cases across the United States.  HFpEF may be described as a geriatric syndrome, as aging processes including biological changes to the cardiovascular system and age-related comorbid conditions have been implicated in its pathogenesis.  Indeed, epidemiologic studies have shown that HFpEF disproportionately affects older adults.  Consequently, management of patients with HFpEF should incorporate aspects of care needed to address the unique vulnerabilities of older adults.  For example, patients with HFpEF almost universally experience multimorbidity (the condition of having multiple chronic conditions) and polypharmacy (high burden of medications); frequently experience cognitive and functional impairment; and often experience changes within their social environment relating to social support, their peer network, and/or financial state.  The Domain Management approach provides a framework for clinicians to address each of these four domains, promoting a holistic approach to heart failure care.

What might the application of a Domain Management approach in clinical practice for the care of patients with HFpEF look like?  Our recently-established Heart Failure with Preserved Ejection Fraction Program at Weill Cornell Medicine/New York Presbyterian Hospital could offer a model for incorporating the Domain Management approach.  For the medical domain, we obtain a detailed history that focuses on both cardiac and non-cardiac conditions, and also perform a thorough review of medications (with physical pill bottles when possible) that include prescription medications, over-the-counter medications, and nutritional supplements.  We pay special attention to the number of medications and regimen complexity, both of which can undermine medication adherence.  For the mind and emotion domain, we routinely screen for cognitive impairment (via the Mini-Cog, which takes <2 minutes to administer) and for depressive symptoms using the PHQ-2/9 (2-4 minutes), both of which can negatively impact self-care.  For the function domain, we screen for frailty and mobility limitations by conducting the short physical performance battery (approximately 5 minutes) which assesses core strength, balance, and gait speed.  We also inquire about orthostatic symptoms and a history of falls.  Our functional assessments have particularly important implications on prognosis as well as decision-making with regard to blood pressure targets.  Lastly, for the social environment domain, we take a detailed social history that includes an assessment of their social network and sources of emotional and financial support.  To address potential concerns related to this domain, our HFpEF Program has a dedicated Social Worker.

While formal assessment of each domain increases the duration of the office visit, we believe that the Domain Management approach facilitates a more nuanced approach to caring for older adults with HFpEF that is comprehensive and patient-centric.  Information acquired for each domain can have a significant impact on discussions relating to the potential benefits and risks of various diagnostic and therapeutic interventions.  Accordingly, we believe that the Domain Management approach is critically important to facilitate shared-decision making.  Whether the Domain Management approach can improve outcomes is unclear; in the future, we hope to share our experience as it relates to outcomes.  Until then, it would seem that any process that can help with decision-making in a complex condition like HFpEF would be worth the extra time and effort.

By: Parag Goyal, MD

Dr. Goyal is an Assistant Professor of Medicine in the Division of General Internal Medicine and the Division of Cardiology at Weill Cornell Medical Center, and is leading a new HFpEF program at New York Presbyterian/Weill Cornell Medical Center.