aginghearts heart failure, palliative care

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).

 

fig1
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).

fig2.jpg
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. 

aginghearts Latest, Patient Caregiver

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

 

aginghearts Patient Caregiver, Shared Decision Making

Decision Making at the End of Life

RuthMr. M was an 89- year- old male with congestive heart failure. Over the past few weeks his dyspnea had worsened such that he could no longer lay flat and had to sleep in a chair on 6L of oxygen. He also suffered from a persistent cough that was exacerbated every time he tried to speak.

Mr. M was living at home with his wife of 67 years. They had married at 21 years of age, graduated from college, had six children and built a very successful business which they co-owned and operated for over three decades. Mrs. M faced her own physical limitations, including being primarily wheelchair-bound due to a progressive myositis. Through the challenges of life, including losing two children and the more recent physical limitations of their respective illnesses, they had become inseparable.

Mr. and Mrs. M had a nearly two-decade long relationship with their primary care doctor. He attended to them with care and compassion, even occasionally doing home-visits. On this occasion, the primary care doctor found Mr. M sitting in a chair at rest with severe exertional dyspnea. After a brief physical exam he recommended admitting him to the local community hospital for further evaluation.

While his primary care doctor was focusing on the immediate differential diagnosis—was his congestive heart failure complicated by possible pneumonia? — he did not step back and look at the big picture. Mr. M had been diagnosed with congestive heart failure eight years prior and it was clear that he was nearing the end of life. The American Heart Association has published a Scientific Statement about decision making in advanced heart failure, which includes referral to hospice in patients approaching the end of life who are not deemed eligible for mechanical circulatory support or a transplant.

figure1.tif
“Decision Making in Advanced Heart Failure,” Circulation, American Heart Association

As Mr. M’s granddaughter, I asked if the primary care doctor would consider hospice instead of a hospitalization. I knew that my grandparents wanted to spend their last days and hours together praying, sharing from their rich stores of memories and holding hands while sleeping. After an open conversation that took into account not just Mr. M’s physical status, but his values and wishes—primarily of which was to be with his wife and surrounded by family—Mr. M was referred to hospice. A week later he passed away peacefully, without distress and surrounded by family members who were able to come to his bedside and share meaningful last words. His last words were instructions to care for his “Queen” and to make sure that she would be given an exquisite bouquet of roses after he died.

In some of our recent work of an analysis of over 1,000 patients with heart failure in hospice, we found that the Palliative Performance Scale was able to provide an accurate prediction of death for patients with heart failure in hospice up to 90 days. This tool and others can be used to support primary care healthcare providers with making a referral to hospice and discussing end-of-life options with patients and families.

We need to shift to allowing patient values to drive the decision making at the end of life. Healthcare providers need to be more open with patients and families about palliative care and hospice services, and patients and families need to be educated to ask.

 

By: Ruth Masterson Creber, PhD, MSc, RN

For additional information on Palliative Care for Heart Failure patients, please visit American College of Cardiology’s blog post: Palliative Care for Patients with Heart Failure

aginghearts Prevention

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