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

 

Hospital at Home

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                                                                                                                                   Photo credit: Shutterstock

Last week marked the annual American Geriatrics Society (AGS) meeting which brings together geriatricians and other healthcare professionals (including a growing contingent of geriatric cardiologists) to highlight the latest in research related to caring for older adults. One of the highlights was the Henderson Lecture, given by Dr. Bruce Leff (Johns Hopkins) on the future of healthcare for older adults moving out of the hospital and into the home. The general concept is that the hospital can be a disorienting environment for older adults, and there are concomitant risks (including hospital-acquired infections, falls, delirium, deconditioning due to immobility) that may be reduced by providing acute care at home. Concomitantly, cost pressures are leading health systems and insurers to think of more “out of the box” solutions to avoid the high costs associated with traditional hospitalizations.

Data on hospital-at-home models have been encouraging. For example, a meta-analysis of over 60 clinical trials in 2012 demonstrated hospital-at-home led to reduced mortality, hospital readmission, and cost. The potential mechanisms are clear: a familiar environment reduces the risk of delirium, which has multiple adverse consequences. Opportunistic infections are much less likely. Family caregivers are more immediately available to provide comfort.

Conversely, it’s clear that many of today’s hospitalized patients are too ill (and at high risk for decompensation) for acute medical care to be safely delivered at home. Within cardiology, this includes conditions that are procedure-intensive (acute myocardial infarction) or require high-level monitoring (cardiogenic shock, unstable arrhythmia). But I think many other acute cardiovascular conditions common in older adults could be managed with reasonable ease at home (mild decompensated heart failure comes to mind), provided adequate resources. Barriers to more widespread adoption of home-base models include payment for these programs (currently a work in progress), as well as the logistics of providing equipment (Dr. Leff noted in his lecture how difficult it was to deliver something as simple as oxygen).

Nonetheless, the paradigm holds considerable promise, and I’d expect health systems to adopt more of these programs in the next 5-10 years. If nothing else, changing demographics (specifically the aging of the U.S. population) will demand more innovative solutions like this.

 

By: John Dodson, MD, MPH

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

Improving the Patient and Family Experience: A Caregiver’s Perspective

authors.pngAs our country’s population ages at an unprecedented rate, we must be prepared to care for them, both as loved  ones/caregivers and health care professionals. For aging patients with chronic illnesses such as heart disease, this is particularly important. This topic impacted the two of us in a very personal way. Although we have spent both of our careers in clinical and leadership health care positions, we were stunned by events surrounding our patient with heart failure, as she was a beloved mother to one of us, and a sister and best friend to the other. The symptoms of her congestive heart failure came on suddenly and crept along forebodingly for a year and a half before the one-two punch came out of nowhere – a cardiac arrest while she was driving her car to a routine medical appointment. Miraculously, she was rescued and resuscitated by bystanders, including several physicians who happened to be nearby.

The seven months that followed were the most painful and difficult that we have ever experienced. Three cardiac arrests within 24 hours led to therapeutic hypothermia, extracorporeal membrane oxygenation (ECMO), left ventricular assist device (LVAD) implantation, tracheostomy, GI tube placement, and multiple complications including femoral hemorrhaging, GI bleeding, kidney failure, crippling deconditioning and serious infection after infection. During this time, she was shuttled back and forth between the ICU and a long-term acute rehab hospital. As we look back on that time through the lens of both healthcare professional and dedicated caregiver, we have identified a significant number of clinical processes and decisions that beg for improvements. Ultimately, she died not from her heart failure, but from a massive infection and septic shock, one of many complications that were a result of the extended amount of time that she was hospitalized and the expensive technology that initially saved her, if only for a few months. Our experience as her primary caregivers throughout her long and complex hospitalization, and the many system and process failures that occurred, have spurred us to communicate these issues in several formats, as well as seek to partner with healthcare organizations to improve the patient and family/caregiver experience. There are so many factors to consider when making health care decisions for our aging patients and family members, especially those with conditions that require costly treatments and interventions that cause complications that are equally as severe as the primary diagnosis itself.

These issues also underscore the importance of having a strong advocate at the bedside for those patients who can’t advocate for themselves, especially our compromised and/or elderly loved ones. Here are some of the key areas that we identified as needing improvement, and that an effective patient advocate must be prepared to address:

  1. Coordination of Care – The transition of care from one care setting to another is one of the most vulnerable points during a patient’s care, leading to quality and patient safety issues. During our sister/mother’s hospitalization, she experienced multiple transitions of care. We were alarmed at the lack of communication of critical information, as well as the absence of a coordinated plan of care between these care settings. We frequently had to step in and act as the care coordinator and educator, although we also found that many clinicians were initially reluctant to listen to us.The importance of the presence and active involvement of family members and other caregivers to a patient’s well-being and recovery cannot be underestimated. We are the people who know the patient most intimately, and can tell when something is not right. Most often, we are also present through the numerous physician visits and change of shifts, keeping track of changing and sometimes conflicting treatment plans, and alerting other clinicians to any issues.
  1. Shared Decision Making – With our sister/mother unconscious and on life support during her initial hospitalization, we were forced to make immediate decisions on life-altering procedures, such as putting her on ECMO to keep her alive until she could regain consciousness to participate in the decision to move forward with what was considered her only hope, an LVAD. Ginny knew from previous conversations that she did not want to consider an LVAD if her heart failure progressed, and we struggled with the decision. This was compounded by inadequate educational materials and pressure by the medical team to implant the LVAD, as they felt it was the only option. After taking a firm stance to wait for her to regain consciousness before we made these medical decisions without her, she awoke enough for us to convince the medical team to include her in the discussion, and she agreed to the surgery. However, looking back we realized how severely impaired her cognition and comprehension about her condition was at the time.Much work has been done recently on determining standards for decision aids to help inform patients of their options and help them take a more active role in decisions about their healthcare treatment options that reflect their personal goals. Research has shown that the use of these decision aids improves patient outcomes.
  1. Palliative Care – Patients must be fully informed of the pros and cons of any treatments, with palliative care offered as an option if appropriate. For patients with life-threatening conditions, such as our sister/mother, a discussion with a palliative care team to develop an Advanced Care Plan should have happened early on, and should have included a discussion about how her advance directives and preferences may change after having an LVAD implanted. As it was, we had to make the heart-wrenching decision to turn off her LVAD after she became comatose as a result of severe septic shock, with no chance of recovery – something we were not prepared for, and that had never been discussed with either her or any of us.

We hope that by relaying some of the challenges we faced during this extremely difficult time, we can help future patients and their caregivers enjoy a better healthcare experience, as well as assist healthcare providers to provide the safest, most efficient and dignified patient and family-centered care.

 

By: Melinda Kane, MS-HCM and Ginny Meadows, MSHI, RN-BC

 


Reference to our longer article: “Finding A Better Way” published in Circulation: Cardiovascular Quality and Outcomes.