Aging and dying with severe mental illness

Perhaps you, like me, were moved to tears by how public figures such as the neurologist and writer Oliver Sacks, M.D., and former President Jimmy Carter wrote and spoke about their terminal illnesses. Dr. Sacks died recently at age 82 and President Carter is now 91 years old. They were able to articulate the anxiety about death that most of us try to repress, as well as to convey what gave their lives the most meaning.

Their individual life spans have gone beyond the United States average, and they have been surrounded by social support and love. However, this kind of aging and dying is not generally true for those with so-called serious and chronic mental illness (SMI). But why? This is a trick question.

While those with SMI tend to be isolated and struggle to find meaning in their lives, it is even more than that. If the life expectancy in the United States is about 80 years, and the formal cut-off age for being elderly is 65, the SMI shockingly don't make either age.

When I started my career in the 1970s, the average life span was about 70 years. Back then, the average life span of the SMI was at least 20 years less and some special attention was paid to integrated medical and psychiatric care to narrow that gap. Our system in Houston had federal grants to do so from the federal government when the elder Bush was president, but after the grants ended, funding was not adequate to continue such programs.

Currently, that major gap in life expectancy still seems to be about 20 years. Therefore, on the average, the SMI will live to the age of 60. This life expectancy is close to that in countries like Ethiopia or Afghanistan.

For certain minority groups, which already have a lower life expectancy of a few years, those with SMI seem to have an even lower life expectancy.

On the other hand, because of their mental illness, those with SMI may not qualify for physician-assisted suicide where available should they desire it due to another terminal illness. Questions about informed consent and competence to choose dying complicate that choice.

The SMI have traditionally been considered to be those who are diagnosed with schizophrenia, bipolar, or severe depression. The reasons for their lowered life span seem to be a combination of the nature of their illness, smoking, lack of exercise, poor medical care, complications of medication, suicide, poor housing and accidents. Unfortunately, even with renewed attention on these risks factors, the gap has not been closed. This is perhaps due to the combined stigma of mental illness and ageism. Adequate funding and reimbursement continue to cause limitations in care.

Now, if those who have SMI do reach the age of 65 and older, the complexities escalate. Co-morbid symptoms and disorders become common—especially some cognitive impairment in those with severe depression and schizophrenia—in addition to other medical conditions and more medications. Perhaps, then, SMI becomes CCC, or complex co-morbid conditions.

There seems to be some services directly related to this geriatric population, such as the occasional ACT (Assertive Community Treatment) program and some attention to depression in some nursing homes, but these programs stand out for their rarity.

Basic data is missing. We don't really know well enough the natural history of those with SMI. Fortunately, we do know that a subgroup does recover fully or partially, with or without treatment. These do tend to live longer and may not show up in our statistics.

We also don't know how many mental healthcare systems pay particular attention to the SMI group as they age. Does yours, for instance?

What is clear is that more needs to be done for these patients as they age, such as ensuring:

• General medical care is provided in integrated systems;
• There is adequate social support;
• There is reasonable housing;
• To prescribe medication at the lowest dosage possible;
• To address what gives their life meaning;
• To find those who can put their challenges into the written word to be shared; and
• To help them prepare to die with their preferences for medical care.

Taking stock of this challenge now is timely. October 10th is World Mental Health Day, and "Dignity in Mental Health" is the theme. Those aging with the more severe mental illnesses need to be treated with dignity and distinction, do they not?