Decision Making at the End of Life
Mr. 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.
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
The 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:
- The best way to preserve a loved one’s dignity is to be their advocate.
- 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.
- 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.
- My role was to connect my loved ones to the best possible medical specialists.
- 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
Dyspnea: Listen to the Patient
“Listen to your patient; he is telling you the diagnosis.”
– William Osler
Dyspnea (the sensation of breathing discomfort) is a common and vexing problem among older adults: one review of the literature found that on average, 1 in 3 adults age ≥65 reported experiencing this symptom.
In addition to being common, dyspnea may portend a worse prognosis. Over 10 years ago, a study in the New England Journal of Medicine found that patients referred for cardiac stress testing who reported dyspnea had four times the risk of sudden cardiac death (compared with those who were asymptomatic), and were twice as likely to die as those with typical chest pain on exertion (median follow-up: 2.7 years). The authors concluded that dyspnea should be routinely evaluated before stress testing. A subsequent study in the PREMIER registry of patients with acute myocardial infarction found that dyspnea was common (present in nearly half of patients 1 month after an hospital discharge), and its presence was associated with impaired quality of life, hospital readmissions, and poorer survival compared with dyspnea-free patients.
It is unclear exactly why dyspnea portends such a poor prognosis. The authors of the New England Journal paper suggested that dyspnea may represent underlying ischemia, left ventricular dysfunction, of pulmonary disease. Alternate causes may include neuromuscular disease, cancer, anemia, or deconditioning. In my own practice, there’s often no single cause – an older adult with heart failure often has concurrent atrial fibrillation, lung disease, and deconditioning.
Similarly, it’s unclear how to optimally evaluate and treat many patients reporting dyspnea. Multiple specialists (cardiologists, pulmonologists, internal medicine) are frequently involved and may have conflicting recommendations. A centralized clinic to evaluate dyspnea (examples here and here) may help to relieve some of the patient burden of coordinating their own care between specialists. In addition, with the growth of goal-oriented care, relief of dyspnea may serve as a reasonable target around which to base therapies. At the very least, it’s clear that dyspnea in older adults should be routinely assessed, and if present should prompt further evaluation. In the setting of rapidly progressing technology in medicine, taking a good history is still paramount.
By: John Dodson, MD, MPH
I recently spoke at a local research conference on the topic of Geriatric Cardiology. My first slide was titled “Language Matters”.1 It referred to an editorial where Ms. Nancy Lundebjerg and her coauthors pointed out that the words and phrases chosen to describe older adults, either emanating from conscious or unconscious thoughts, will likely lead to certain actions. In fact, they note that the language currently used has been “an obstacle to convey to the public and policymakers the advances that have been made in healthcare and aging services.”
Furthermore, the language we choose may lead to certain biases that we develop against older adults, the possible beginnings of ageism. Ageism is an “ism”, unlike the other two, that can potentially affect all of us. Although it can be overt it is often unintentional. It refers to the discrimination against older adults “based on negative or inaccurate stereotypes”. To combat these negative or inaccurate stereotypes we must first be aware of them. I am referring to:
- Words that have become grounded in our day to day thoughts, conversations, and actions.
- Words that create a false imagery of aging as being only fatalistic.
- Words or phrases that convey that this is someone else’s problem.
- Words that editorialize the actual data in a negative manner.
- Words such as “elderly”, or “seniors”.
- Phrases such as “silver tsunami”, “tidal wave of aged persons or seniors”
The next step is to change our vocabulary. Some specific recommendations that were made were to:
- Use neutral words such as older people, older adults, older Americans (when describing persons aged 65 years and older).
- Be inclusive using words such as “we and us.”
- Avoid the use of words like “aged, elder, elderly, seniors as these often have specific connotations, individual biases and negative imagery.
- I have often attempted in my clinical encounter notes to go as far as separating the concept of chronological and physiological age by stating: “This is a female of chronological age of 85 years who has no significant cognitive disturbances, a firm social support and has intact instrumental activities of daily living and activities of daily living who presents for further management of her (name disease here).” This goes even a step further and attempts to separate the preconceived imagery based on individual biases when just stating a chronological age.
- Avoid the use of words like “aged, elder, elderly, seniors as these often have specific connotations, individual biases and negative imagery.
- Use phrases such as: “Older adults are living longer and healthier lives”.
- Avoid the use of phrases such as “tidal wave,” “tsunami,” and similar catastrophic terms for the growing population of older adults. These phrases serve only to detract from the message and don’t point to the specific facts needed to solve the problem.
- In research setting use statements such as: “Our study has demonstrated that older adults had a higher incidence of a certain disease” and “We hypothesize that this is perhaps due to inadequate access to key health resources”. Then suggest improvements that can be made to completely or partially offset the problem. Explain the rationale for the finding in a positivist attitude rather than avoiding it or referring to it in a fatalistic manner.
“Language Matters” is an excellent, timely, factual, editorial that I am sure the entire geriatric and geriatric cardiology community embrace. However, a more important goal should be to disseminate this topic to our non-geriatric inclined colleagues to change the current culture and proudly display the advances that have been made in healthcare and aging services.
For further information please read the entire article that is freely available at
https://onlinelibrary.wiley.com/doi/full/10.1111/jgs.14941
Other important resources in this area of appropriate language and older adults:
http://www.frameworksinstitute.org/toolkits/aging/
http://asaging.org/blog/developing-research-agenda-combat-ageism
Reference:
Lundebjerg NE, Trucil DE, Hammond EC, Applegate WB. When It Comes to Older Adults, Language Matters: Journal of the American Geriatrics Society Adopts Modified American Medical Association Style. J Am Geriatr Soc. 2017;65(7):1386-1388.
By: Ashok Krishnaswami, MD, MAS
aginghearts.org 