June 3rd, 2016
The Sound of Silence
Charity Maniates, MSPA, MPH, PA-C
Skilled rehabilitation facilities are faced with a troubling trend. Rather than the majority of patients recovering with straightforward joint replacement surgeries, these facilities have become a crossroad for patients to transition to long-term, palliative, or hospice care. Patients discharging from the hospital assume that during a period of one to two weeks, they will transform with therapy, gain strength, and return home successfully — an unlikely scenario for patients with serious illness, end stage disease, or recurrent hospitalizations. To be fair, often families or patients push for another attempt at gaining strength with the hope that the inevitable will be delayed. Yet, the majority of admissions include frail elders with multiple readmissions for end-stage CHF, COPD, or terminal cancer. These patients usually do not return to their previous baseline and may decline further or reach a reduced level of functioning as a result of their last hospitalization. This reality is very distressing and comes as a surprise to patients and their families.
Why is this trend happening? It’s multifactorial, as we say in medicine. Unsafe living environments, decreased functionality, frailty, advancing dementia, and progressive disease all contribute. Yet perhaps the primary reason— one that if addressed could reduce this challenge substantially — is poor communication between providers and patients and their families during the early stages of illness, when a dialogue should occur about goals of care, especially when a serious or advancing illness is experienced. Over the course of advancing illness, often the prognosis is not clear to the patient and family, leading to unrealistic expectations or unsuccessful recovery. Additionally, when end-of-life care wishes are not voiced or appear clouded, extensive workups that do not improve quality of life occur. Consequently, care is reactive every time an exacerbation recurs or symptoms worsen, resulting in unnecessary prolonged suffering or, worse, dying in a hospital bed rather than quietly at home.
The simple solution is to initiate clear conversations at early stages of serious illness. However, on the whole, this discussion does not come easily or naturally to medical providers. After all, we are trained to diagnose and treat disease and save lives; robust training in palliative care and end-of-life care is scant. Faced with office visit time constraints or patients lost to follow-up, providers may not feel they have the time or the ability to engage patients in a delicate conversation. Consequently, providers avoid broaching the topic and resort to what we are comfortable with: tests, medical jargon, and workups. For many patients, a robust conversation about their illness occurs after multiple hospitalizations, triggering a palliative care consult. In an ideal approach, the entire medical community should take responsibility as a whole to engage a patient in assessing the understanding of their illness and prognosis. In the long term, being proactive will reduce futile readmissions and, most importantly, honor the wishes of patients when end of life is near.
Working in geriatrics and skilled nursing facilities, I frequently engage in conversations about goals of care, and many times I have left a patient’s room feeling frustrated that a resolution or next step was not reached. Recently, I attended a training on engaging a patient in a “serious illness conversation” and learned that with some practice, a provider can engage in an effective 20-minute serious illness conversation, according to an evidence-based guide developed by Harvard Medical School Center for Palliative Care and Ariadne Labs.
The trainers highlighted that a serious illness conversation is evolving and touched upon numerous times as illness or symptoms change. A concrete resolution or action may NOT be reached during a conversation, which was an epiphany for me. (Really, how can we expect every patient to have concrete answers or acceptance of their illness during one conversation?) Time is often needed to assimilate information, reflect, and talk with loved ones.
A significant proportion of the conversation guide focuses on sharing and exploring prognosis. When sharing prognosis (surprisingly, the most overlooked and avoided topic for medical providers), allowing silence and then exploring the emotion of the patient is key. This is harder than one would expect. During the training, I role-played sharing a prognosis with a stoic patient. I allowed for silence — a short, uncomfortable, three-second silence. Feedback from observers was that I rushed to provide information too quickly, not allowing the patient enough time to ask questions or process. Utilizing a conversation guide helps to ensure vital components surrounding prognosis are addressed including: important goals, fears, worries, and how much a patient is willing to go through for the possibility of more time. Once comfort is achieved with the flow of conversation, tailoring for each patient becomes much easier.
What drives me to continue to cultivate my “serious illness conversation” is the positive response I have received from patients when conversations have gone well. I recall a family member crying on the phone, thanking me for bringing up the topic because she didn’t know how to. In another, a patient in rehab with end-stage cardiomyopathy was failing and desperately wanted to go home. Hospice care was initiated at her discharge, and three days later, the patient’s sister called me, overwhelmed with gratitude that she had passed peacefully at home, fulfilling her last wish. (My only wish was that it had been six months earlier.) These are moments that fill me with passion and fulfillment for the work I do.
The next time you have a visit with a patient with a serious illness, resist the urge to brush over “that topic.” Don’t assume that the next provider will bring it up, because most likely they won’t. Simply ask the patient if they are open to talking about their illness and how things are going. This straightforward invitation to delve into a gray area of medicine, rather than offering a procedure or test, can be more powerful to your patient than you know.