Health Reform and the “Vulnerables”

In the health insurance industry, young adults are known as the “invincibles”. Like the superheroes that inhabit movies and TV now, these young men and women believe they are impervious to illness, disease, and injury. Therefore, they do not acquire health care coverage, believing they are “invincible”. It is human nature to create groupings of individuals and name that grouping. We commonly talk about “baby boomers” and “millennials”. Tennessee Williams said that he wrote about the “incomplete”. Studs Terkel in his book, Working, said he interviewed and wrote about the “uncelebrated”. Today for this blog, I create my own grouping. Here’s why.

On Friday, April 8, I will attend a discussion with other physicians regarding death with dignity laws. The physicians at this discussion will seek to find common ground on death with dignity, a topic that has been subject to heated debate in many states across the country.  Death with dignity laws have been enacted in Oregon, Vermont, Washington, and California. The topic is pertinent because the Iowa legislature has been debating the issue this session.

As I prepare for this discussion, one of my greatest concerns is about vulnerable populations—the mentally ill, the elderly, and those with mental and intellectual disabilities. For the purpose of this post I will refer to the individuals in these groups as the “vulnerables.” In a November 2008  article reviewing the first 10 years of the death with dignity law experience in Oregon titled, Ten Years of ‘Death with Dignity,’ by  Courtney Campbell, the Hundere Professor of Religion and Culture at Oregon State University, Dr. Campbell discussed a concern for this especially vulnerable group.She said, “For a statute that is promoted explicitly through the rhetoric of patient self-determination and choice, such findings present a substantial concern that the Oregon Death with Dignity Act may not provide sufficient protection for some vulnerable patients.”

In another use of the term, it is the “vulnerables” in the Iowa Medicaid program that I have been specifically talking about regarding Iowa’s transformation of Medicaid to a system operated by for-profit managed care companies (MCOs).

In a third iteration of the term vulnerable, I am concerned that in the current Presidential primary season, both Republican and Democratic, non-voting citizens, including the young, the elderly, and the disabled of the United States are not being considered, particularly regarding health care. These “vulnerable” groups must be considered when we are voting for President because the new President will decide the future of health care in America.

In these three situations, governmental officials, or those who would like to be governmental officials, are taking liberties with the health, well-being, and the lives of individuals who many times cannot speak for themselves.

Regarding death with dignity laws, I am concerned for patients who have one of the following deficits, which I call the four C’s–Communication, Competency, Composure, and the ability to be “Conned.” First is communication. During my thirty-two years of working with hospice patients, I have had many patients with amyotrophic lateral sclerosis (ALS), Parkinsonism (Parkinson’s disease), multiple sclerosis (MS), and stroke, who have communication difficulties that could complicate and potentially lead to manipulation regarding the patients’ ability to request a death with dignity action.

Second is competency. Many terminally ill patients have either a disease caused condition or co-existing conditions that could affect their cognitive ability for making a competent decision regarding death with dignity. Early in my monthly blog posts, I mention a series of lectures regarding hospice given by Dr. Eric Cassell at Harvard University titled, Practical Aspects of Palliative Care. In one of those lectures, he made the point that “sickness brings cognitive impairment” and cited a study from the Annals of Internal Medicine (2001), titled “Preliminary Evidence of Impaired Thinking in Sick Patients.”

The third ‘C’ is composure, by which I refer to mental illness. I do not think a patient with clinically significant depression, bipolar disease, or schizophrenia can be considered able to request a death with dignity option.

The fourth ‘C’ is the ability to be conned. An example: a terminally ill patient is manipulated by family members, friends, caregivers, providers, or even manipulate themselves into thinking that the world would be better if he or she were dead. I have seen elderly patients suffer abuse by the same individuals who con them—attempt to persuade them—into   doing harmful or fatal actions in order to benefit their family members, friends, caregivers, or providers. Many times I have had a hospice patient express unhappiness that he or she is burdening their family with their disease.

Finally, in full circle, let us return to the “invincibles”. These young adults are no longer invincible when they are severely maimed in a motorcycle accident, become addicted to heroin, develop schizophrenia, or Hodgkin’s Lymphoma. In these situations, the individuals become vulnerable, especially when they do not have health care coverage. We are all vulnerable. In my first paragraph, I did not finish the statement by Tennessee Williams. It is this: “Tennessee Williams said he wrote about the incomplete because he was incomplete.”