Bioethics Forum Essay

Meeting the Needs of Aging Patients with Chronic Mental and Medical Illnesses

My brother-in-law Mark died a couple of weeks ago.

He had struggled with schizophrenia for over 45 years, so at age 64 1/2, he had exceeded the average life expectancy for men with that illness by about five years. The cause of death was listed as cardiopulmonary arrest, which it probably was. Forty-five years of antipsychotic medications and smoking will do that to a person. The board-and-care staff where he had been living found him dead in the morning, on the floor next to his bed. The real cause of death, however, is more complex. 

When the ethical and the clinical become the personal, things often look differently than they looked before. Previously unconsidered questions arise. Reality sinks in, replacing what was merely theoretical. Mark’s situation brought home the complex dynamics of how to support people who have both advanced chronic mental health illness and medical illness. These individuals may not satisfy specific criteria for help with either medical decision-making or with performing basic daily activities when viewed separately, but when combined, their needs may be overlooked in our health care system.    

I did not know Mark when he was first diagnosed, but he was reportedly challenging and difficult at the beginning. It took a while for the older first-generation antipsychotic medications to control the voices and thoughts that permeated his brain. By the time I met Mark, he was better—occasionally moody, but usually pleasant, chatty, cooperative, and content. In fact, when I married his sister, he was studying to get a commercial driver’s license, which he eventually did obtain. He had a gift for geography and a terrific memory. Unfortunately, his mental illness prevented him from ever being able to hold a job.

I can think of few health conditions more troubling than chronic psychotic illness. The very essence of one’s person—the brain—does not work the way it is supposed to. Because schizophrenia begins in young adulthood, people live their entire life knowing they are not right in the head. They cannot think or reason or focus normally, whatever that means. And even though intrusive thoughts may be controlled with medication, they are not necessarily completely gone. Sometimes Mark’s pleasant chattiness was not fully comprehensible.

Because Mark was challenging and difficult during those early years, the reasonable and safe decision was made for him to live in a supportive environment with trained staff who knew how to handle individuals with mental illness. The first few board-and-care facilities Mark lived in were small and had only a few residents. Staff were generous and attentive. Mark took the bus and attended day programs. He even took an airplane once to visit his sister and me when we lived out of state. Over time, however, these facilities closed, and the ones that he moved to simply were not able to offer the same level of personal attention. The care he received might not have been the only cause, but his functional abilities slowly deteriorated. The staff at the place where he died were kind and friendly, but they were not as well-trained as previous staff were. And they certainly were not trained to handle a man who had serious mental illness and had developed several serious medical conditions, including cardiac and lung diseases, needing an array of medications and multiple follow-up appointments.

The county behavioral health staff where he resided were also ill-equipped to manage older patients with advanced chronic mental health and medical illnesses. His most recent case worker was concerned and compassionate and tried hard to organize and coordinate his care but was overworked with too many clients and overwhelmed by Mark’s complexity.

One specific complexity of Mark’s situation was how clinical decisions were made and implemented. Despite our voicing significant concerns, none of his ambulatory doctors— psychiatric nor medical—ever thought he lacked decision-making capacity. Therefore, outside of a few acute hospitalizations when he needed a surrogate decision-maker (his sister, for the last several years), he was on his own. Similarly, his doctors did not think he needed a conservator to supervise the implementation of clinical and other life decisions. The board-and-care provided food and a place to live and did laundry. Mark seemed largely content to his psychiatric and medical clinicians, and the system was content with that.

The problem with that assessment is that while Mark may have had the capacity to make many clinical decisions (though not all, in my opinion—especially the more complex cardiac and pulmonary decisions), he did not have the agency to direct most of the care he needed.

Medical decision-making capacity is the overall ability of a person to make and voice an informed, authentic, autonomous clinical decision, at a particular point in time, after reflecting on the facts of their situation and the anticipated consequences of the options for care. Scholars describe capacity as the integration of the four sub-abilities of a person to understand their medical situation generally, appreciate the facts of their immediate situation specifically, reason with this information to weigh the benefits and burdens and the advantages and disadvantages of different options for care, and communicate a choice. People lacking medical decision-making capacity need a surrogate decision-maker to make clinical decisions for them, appointed either via an advance directive, by state statute, or by the person’s attending physician, depending on where the person resides.

Individual agency is the ability of a person to act on their own behalf and make things happen for themselves in daily life. People who cannot manage their own financial resources and provide for their own food, shelter, and clothing are eligible for a court-appointed conservator to help them manage these practical activities of everyday living.

Given thoughtful explanations and presented carefully considered options, Mark may well have been able to make authentic decisions most of the time. But he usually was not able to ask clarifying questions, and he definitely was not able to identify and plan activities and make things happen for himself. Thus, when the complex challenges of his situation exceeded the ability of the system to provide comprehensive, coordinated care, there was no clear response.

Sometimes, his family members were able to push and nudge the board-and-care staff and the case workers and his various doctors to schedule appointments more frequently, work on medication compliance, order lab tests in a timely fashion, and coordinate care among his various clinicians more comprehensively. Many times, however, those efforts failed. Mark’s family had no specific authority. And, again, the good people helping him were overworked, undertrained, and otherwise ill-equipped to do all that he needed in a timely and efficient fashion. To the fault of no one person, medication management and follow-up care were sometimes lacking.

A couple of years ago, the Hastings Center Report published an excellent article on interdependent decision-making. The focus was on patients with dementia and other neurocognitive conditions, but I think it has wider application. While mental health doctors and physical health doctors tend to divide the brain into the “psychiatric part” and the “neurologic part,” as a family doctor, my perspective is that there is only one unified brain. Thus, while a patient may not meet specific criteria for a surrogate decision-maker or a conservator based strictly on a psychiatric basis or a neurologic basis, they still might need formal, appointed, reliable oversight and guidance. 

Capacity and agency are not always black and white, yes and no. In fact, my experience as an ethics consultant is that they rarely are. For example, medical ethicists say that capacity is decision-specific, but we apply that thinking only to major decisions in acute hospital situations, such as whether to perform dialysis or surgery or use mechanical ventilation or otherwise escalate or withdraw care. We tend to overlook the problem in ambulatory settings—clinical ethicists work mainly in hospitals. And we absolutely tend to disregard it in ambulatory setting for individuals like Mark who have with both mental and physical health diagnoses where no one professional “owns” the problem. And agency? Outside of individuals who clearly meet legal criteria for conservatorship, my experience is that we do not address agency at all.

Somehow, we need to figure out a way to implement different levels of capacity support and agency assistance in real life community practice. Advances in health care and an aging population will lead to many more people with these needs living in these circumstances in the years to come.

When we visited several times a year, over holidays, on birthdays, and on random weekends, Mark and I would inevitably look at each other and say, “Two marks of distinction!”

Now, one is gone, and the other does not feel so distinct.

God bless, Mark. I will miss you.

Marc Tunzi, MD, MA, HEC-C, is a safety-net family physician, residency educator, and clinical ethics consultant in Salinas, California.