“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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Patient Priorities Care: State of the Art

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Photo credit: Shutterstock

The Journal of the American Geriatrics Society published 3 related articles on redesigning healthcare around patient priorities, which I’ve linked to below. This work represents the leading edge of incorporating patient priorities into decision making for older adults. The rationale (previously discussed on this blog here, here, and here) is that for many older adults, the applicability of disease-specific guidelines are unclear; many of our therapies (in cardiology and elsewhere) were studied in relatively young patients with few comorbidities. In the setting of limited evidence, the concept of patient priorities care therefore emphasizes eliciting what matters most to patients – and designing care plans around specific, actionable goals.

Patient priorities care in practice is complex since it requires training of clinicians and support staff, engagement of patients, and streamlining of health information technology, all within our current time-limited healthcare environment. Nonetheless, the pilot studies by Naik et al. and Blaum et al. demonstrate that this care model can be effectively implemented in practice. The accompanying editorial by Applegate et al., which states that “Clinical guidelines could be revised to integrate the tradeoffs between multimorbidity, functional status, and polypharmacy in making management decisions” represents a longstanding principle of geriatrics which appears to be gaining traction in other fields (including cardiology).

Links below:
Naik et al., “Development of a Clinically-Feasible Process for Identifying Patient Health Priorities.”

Blaum et al., “Feasibility of Implementing Patient Priorities Care for Patients with Multiple Chronic Conditions.”

Applegate et al. “Implementing ‘Patient-Centered Care’: A Revolutionary Change in Health Care Delivery.”

 

By: John Dodson, MD, MPH

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

 

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.

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“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