Gaps in health care for the chronically ill

This is a story about Mr. D, a lovely 85-year-old gentleman who I cared for on our General Internal Medicine service. He suffered significant cognitive impairment due to both dementia and the deposition of protein in his brain caused by chronic inflammation (known as cerebral amyloidosis). He also had advance prostate cancer. As a consequence of his cognitive deficits, neither he nor his wife was able to care for him, and he therefore lived in a nursing home. Whenever he became unwell, he came to hospital for treatment.

Mr. D was admitted to our service for a bacterial infection in his blood caused by a urinary tract infection. During his stay in hospital, I met his wife, a magnificently empathetic and compassionate woman, and his two sons who were intelligent, caring and rational individuals. When we were ready to plan for his discharge from hospital, I approached the family to discuss his Goals of Care (medical jargon that just means what types of treatments Mr. D would want if he were to get severely ill again in the future).

The family decided to avoid hospitalizations for Mr. D where possible, but they were not yet ready to pursue my recommendation for Comfort Measures (more jargon for care that focuses entirely on comfort and relief of suffering). Our hope was that should he require relatively simple interventions such as intravenous antibiotics or fluids, they could be administered in his nursing home. He would return to hospital only if he became severely ill. But after this discussion I realized that there are significant limitations in the types of care we can actually provide for a patient like Mr. D in the community.

Three obstacles prevented us from meeting his goals of care: 1) his nursing home was unable to provide intravenous fluids or medications; 2) the physician who provided cared for the residents of the home was understandably unable to provide more frequent care than on a weekly basis; 3) our ambulatory Geriatrics team cannot provide care to a patient in a nursing home, since a physician already oversees their care.

As a result, Mr. D is stuck bounding between his nursing home and the hospital.

Mr. D is what is referred to as the hospital-dependent patient; one who is, “precariously and transiently compensated while hospitalized…with an acceptable quality of life when supported and comforted by high nurse-to-patient ratios, available monitoring and diagnostic capabilities, and on-site physicians and therapists who can respond quickly to changes in their condition.”

The advances in modern medicine have allowed patients with severe disease to live longer, where in the past they might have succumb to them at a much earlier age. Such patients are usually old, almost always have multiple chronic conditions, and have minimal physiological reserve to compensate for acute stress or injury, which leads to repeated hospitalizations for intermittent episodes of illness. Unfortunately, I have found that these hospital-dependent patients, including patients like Mr. D, tend to follow a course of, ‘multiple readmissions with progressive deterioration in functional status and loss of resilience over a period of months to years’. The hospital-dependent patient is unable to live outside of the hospital because – at least within our current health care system – their medical problems cannot be adequately managed outside of the hospital. This may be because the medical response to their illness is not quick enough, or the necessary treatments are not available to them in the community. Consequently, they often reach a point where they decide to pursue comfort measures or else they die in hospital suffering in their final moments of life.

As Drs. Reuben and Tinetti have written, “medicine has yet to acknowledge the ethical and practical predicament of having created a population of incurable, fragile, but not yet terminally ill patients without concurrently developing a health care system that can meet their needs. By default, frequent, unplanned readmissions to the acute care hospital have become the fail-safe backup.”

There is very limited research surrounding the hospital-dependent patient. As a consequence, we do not know how many of these types of patients are living in our communities, nor do we have a systematic approach to address their multiple health-related problems. I believe this is the next major challenge facing our healthcare system. For now, it is only a matter of time before Mr. D returns to hospital.