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

Putting Older Patients First

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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

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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.

Conversations with Older Adults

I wrote a piece on the importance of conversations with our older patients (and the inability of technology to replace these) on Kevin MD last week. I’m providing a link to the article here. In an era of rapid technological change, it’s important to remember that our older patients are unique, not only in their life experiences, but also in their impairments, care preferences, and social context. While technology will play a role, it’s essential not to lose sight of the importance of investing in the future geriatric workforce. In addition, developing novel clinical programs tailored towards older adults’ needs, given our changing demographics, is vital. There’s a lot of innovative work being done in this arena which we’ll be featuring (along with other content) in the coming year.

By: John Dodson, MD, MPH

“I Had No Choice”: Perspectives from Heart Attack Patients on Coronary Interventional Procedures

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Photo taken at Boston Public Garden

Last week, I had the privilege of attending the Gerontological Society of America (GSA) 2018 Annual Scientific Meeting that was held in Boston, MA this year with the theme centralized around “The Purpose of Longer Lives.” GSA is one of the oldest and largest interdisciplinary organizations that is well-attended nationally by scientists, clinicians, and students who all have one thing in common: a passion for gerontology research.

Aside from connecting with many respectable researchers in the field, I also had the opportunity to present findings from our qualitative research focusing on decisional needs among older adults with cardiovascular disease. Specifically, our study sought to investigate the perspectives of older adults on coronary interventional procedures after their hospitalization for acute myocardial infarction (otherwise known as AMI, or heart attack). In recent decades, older adults have been undergoing more coronary revascularization procedures for AMI (stent placements and coronary artery bypass surgery (CABG)); consequently, procedure-related risks are more common. Moreover, time-sensitive settings during AMI at times do not allow for easy shared decision-making (SDM) discussions with their clinicians to detail these risks. Our study therefore was interested in probing further into AMI patients’ decision-making process – and to identify what factors, exactly, that led them to decide on whether or not to undergo a coronary revascularization procedure.

Based on our preliminary research from 15 patients who had been hospitalized with AMI and discharged home, the main themes that emerged were as follows:

  1. Procedural risks are perceived to be minimal when compared to perceived benefits.

Perceived procedural risks – which were generally described to be stroke, bleeding, and death – were viewed minimally when compared to the benefits. When asked to list the perceived benefits, patients mentioned “living a healthy life,” “no pains,” and “prevention of future heart attacks.”

  1. Some respondents reported that the alternative to a procedure was death.

“I would not have come to the hospital if I wanted to commit suicide,” stated one respondent. While this may be seemingly viewed as a more extreme perception of the alternative to the procedure, this theme was seen across several respondents. For example, another said, “That [turning down the procedure] didn’t enter my mind at all. In fact, I would’ve been dead at this point.” Most participants viewed that they “had no choice,” stating that they would not have been alive without the interventional procedure, and as a result, viewed the procedure was an absolute necessity.

  1. Participants place a high level of trust in their cardiologists when making decisions.

A majority of respondents revealed that faith in the physician was also a major factor contributing to their decision-making process—regardless of how long they have known their cardiologist. While one participant was loyal to their outpatient cardiologist of 28 years, others put an equal amount of trust in the interventional cardiologist whom they met on the same day of the procedure. One respondent, who was unconscious during her episode, stated: “I wasn’t thinking straight, but I had total belief that the doctors were going to take care of me.”

  1. Receiving procedural information, before or after the procedure, could aid in a better overall satisfaction of the experience.

All participants expressed that it was very important for them to understand their heart disease and associated procedures – even if it is after the procedure was completed. This was especially predominant among participants who had an ST-elevation MI (STEMI) who underwent their procedure rapidly. Some suggestions on how this could be achieved include providing a copy of the angiogram results, providing pamphlets and brochures, and sending medical personnel to explain the procedure more in-depth immediately pre-procedure, or during early recovery.

  1. All participants highly value what is perceived to be SDM.

All of our respondents, regardless of whether or not they have received a procedure, expressed a desire to have a discussion with their clinicians regarding their treatment options and the risks and benefits of a procedure.

Based on our findings, SDM has the potential to better overall patient knowledge and satisfaction with care. SDM is probably most applicable in the setting of non-ST segment AMI (NSTEMI) where there is time for more informed discussions. Notably, NSTEMI is the most common AMI presentation among older adults. We believe our work supports the future utilization of SDM in clinical practice, and perhaps, a future tool designed to better expedite the SDM process in the inpatient setting.

 

By: Jenny Summapund, MA

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