Patient Priorities Care: State of the Art

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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

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

Statins for Primary Prevention

dodson%20headshotA recent review article in JACC highlights the conundrum of primary cardiovascular disease prevention with statins among older adults. We often face this dilemma in our outpatient practices: specifically, whether patients age ≥75 without overt cardiovascular disease should be prescribed a medication to reduce their future risk, where the benefits of prevention may not accrue for several years. We are operating in a field with scant data: patients in this age group have been underrepresented in clinical trials showing benefit, and recommendations therefore need to be extrapolated from younger individuals. Accordingly there is a discrepancy in guidelines – while the UK NICE guidelines provide a strong recommendation for primary prevention statin therapy in this age group, other societies (ACC/AHA in the U.S., ESC/EAS in Europe) provide a weak recommendation, and the USPSTF in the U.S. provides no recommendation.

The authors highlight several issues to take into consideration when prescribing statins for primary prevention in this age group, including frailty, comorbidities, and polypharmacy (all of which may increase the risk of adverse drug effects), as well as limited life expectancy (which may prevent long-term benefits from accruing). They also discuss the importance of shared decision making with patients, taking into account their values and goals. Notably, statin decision aids already exist which may facilitate this process.

Several years ago we had written a piece on primary prevention for ACC.org which stated “statins are probably both under- and over-utilized in older adults,” and in my opinion this statement remains accurate. For an older patient who is functionally independent, with few life-limiting comorbidities and a strong desire to reduce their cardiovascular risk, a low to intermediate dose statin makes sense. For a patient with a major life-limiting illness, who wants to reduce their medication burden, it’s reasonable to not prescribe or even “de-prescribe” statins. Ultimately, the variation in guidelines described by Mortensen and Falk in their JACC article highlights that in the absence of consensus, care needs to be individualized – which is a central principle of geriatric cardiology.

 

By: John Dodson, MD, MPH