The Heart of the Matter: Palliative Care in Heart Failure

Megan Rau HeadshotApproximately 5.7 million U.S. adults have heart failure (HF), and 1 in 5 individuals over age 40 will develop HF in their lifetimes. HF is accompanied by many symptoms – including fatigue, shortness of breath, mood changes, pain, and anorexia. Among older adults with HF, these symptoms are compounded by mobility limitations, frailty, and other co-morbidities. Palliative Care is an optimal way to address symptoms while concurrently treating with disease-modifying interventions (Figure 1).

 

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Figure 1. Schematic Depiction of Comprehensive Heart Failure Care. 

Palliative care is defined by the World Health Organization as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual…Palliative care is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life.”

Palliative care can help HF patients in several ways. First, the palliative care team can work with a patient’s cardiologist in proactively treating symptoms as they develop over the course of the illness and during times of exacerbations. While the underlying cause of these symptoms is not completely understood, hypotheses suggest that physiological changes contribute to symptom burden (Figure 2).

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Figure 2. Schematic Etiology of Heart Failure Symptoms.  

One of the most common symptoms with heart failure is dyspnea, and a patient’s cardiologist and palliative care clinician may work together to treat dyspnea by using diuretics to optimize fluid status, teaching breathing techniques, and (in advanced disease) administering a low dose opioid such as morphine to alleviate shortness of breath. These treatments have the unified goal of improving a patient’s quality of life.

Second, palliative care assists with effective communication between patients and clinicians in the form of advanced care planning – including establishing a health care proxy, completing advanced directives, discussing goals of care, and having end of life conversations regarding when to stop certain interventions. Advanced care planning discussions help to ensure patients’ preferences for what is most important in their care are met.

Goodlin et al provide examples of language clinicians may use to eliciting these preferences, such as “What treatment we recommend depends on your medical condition, but also on what approach to care you prefer and what is important to you at this point in your life”. This statement allows a platform for patients to express their wishes and what quality of life means to them. Their clinician is then able to recommend treatments that align with their goals and preferences.

HF is a common disease with a dynamic trajectory due to periods of exacerbation and recovery. It is imperative that cardiologists and palliative care clinicians work together to provide disease-modifying interventions while concurrently treating symptoms and developing advanced care plans with patients.

For more information on Palliative Care in Heart Failure visit the following websites:

 

By: Megan E. Rau, MD, MPH

Dr. Rau is a practicing physician at NYU Langone Health who specializes in geriatrics and palliative care & hospice. 

“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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Hearing Loss and Heart Failure

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Photo credit: Shutterstock

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

 

Days Spent at Home

 

homeAn incredible amount of effort has been spent over the past decade in attempting to reduce the number of older patients who are readmitted to the hospital within 30 days. The argument is straightforward – readmissions are costly, disruptive for patients, and may represent insufficient coordination of care. While the proportion of readmissions that are truly preventable remains an area of active debate, readmissions are nonetheless a prime metric by which health systems are currently judged. Accordingly, many researchers (myself included) have published on factors associated with 30-day readmissions among older adults.

Recently however, the concept of “days spent at home” has emerged as a potentially more patient-centered goal. In an article in the New England Journal of Medicine, Drs. Groff and colleagues argue that this metric (initially inspired by the family member of a patient) may represent a closer ideal of what matters most to patients. This perspective makes sense to many of us in practice: while I’ve rarely had a patient tell me that what matters most to them is not being readmitted to the hospital within 30 days, they frequently tell me that what matters is spending time with loved ones, in a familiar environment. While the two concepts are related, “days at home” incorporates events beyond the hospital such as extended stays in skilled nursing facilities. It also provides important granularity – it is a continuous measure – rather than the simple “readmitted or not” paradigm that we have grown accustomed to.

Groff et al. conclude that “Outcome measures that reflect what truly matters to patients can define performance in ways that increase the engagement of patients, clinicians, and provider organizations in the redesign of care,” and I couldn’t agree more. A next critical step will be eliciting actual care preferences from patients in a formalized manner, and tailoring care plans towards these preferences. To date, studies have shown that many of these patients will likely prioritize spending days at home.

 

By: John Dodson, MD, MPH