Alternative treatment options for seriously and chronically mentally ill patients—

Did I make the right choice?

Introduction

My intention in writing this blog is to share the experiences that I went through with my son, starting with the first manifestation of his illness and our journey through numerous subsequent episodes. Also to provide commentary as a parent and psychiatrist on issues that these experiences bring up, such as how the diagnostic process works in mental health, how to work with treatment providers and medication issues. My hope is that reading this may be helpful for people with mental health issues and also their families and friends.

Alternative treatment options for seriously and chronically mentally ill patients—Did I make the right choice?

For families facing serious mental illness in their loved one it is hard to determine the best course of action. They may think “Perhaps this severe episode will be the only one and will not recur”. “So should I invest in getting them well and cling to the hope that this illness will not recur?” While at first glance this might seem naïve, it is in fact the case that in approximately 25% of cases of a severe psychotic episode and in 50% of severe depressions the illness will not recur. Although it may be reasonable to defer judgement initially, the longterm odds are not good. The vast majority of people with a severe mental health illness episode have recurrence: 50% of severe depressions recur , 80% overall with a psychotic episode have a recurrent episode, including 80% with schizophrenia. In bipolar disorder, within two years of followup 48% experienced recurrence.

One treatment option is private insurance, for those who can afford it. The advantages are some degree of choice, given whatever restrictions the insurance company has and a major disadvantage, the fact that most insurance companies limit the number of days that a service will be covered. In Bill’s case even when the services were covered by private insurance there was always a threat that at any moment that coverage could be revoked—they didn’t want their length of stay statistics to suffer. However it should be noted that some of the longer term residential treatment covered by an insurance option are only offered by private insurance, even if ultimately for a limited stay. There are many different situations in which this may apply. For instance, a friend with a chronically suicidal son found that an out of state long term care facility for severely ill patients provided sufficient treatment options that her son was ultimately able to recover.

Given the possibility that patients may need ongoing support and care for an extended time period, another option is to entrust them to the public mental health system, as I did with Bill. For many families, including mine, it wasn’t so much a choice as a dwindling of alternatives as the patient (Bill) became increasingly ill and less able to take care of themselves financially. A system that offers supported work, for example, may be an attractive option. But in order to avail the patient of most of the publicly supported programs they must be declared disabled by their psychiatrist, a process that can take months or even years if the diagnosis is in doubt. The options that become available to the disabled patient are quite variable, state by state and county by county. Some programs pair with universities to offer internships for recent graduates to learn and contribute at the same time. Many resource rich programs, both hospital and outpatient have taken years to develop, accruing new modifications and add-ons over time. Their funding is dependent on a combination of local and federal government funding to authorize payment for specific programs. In Bills case the programs that had helped him, such as the state hospital inpatient program, became unavailable as the government limited access to only include patients with a history of criminal acts. Hospital alternative programs became increasingly scarce and as a result Bill had increasing numbers of community hospital hospitalizations, all of them short, and most without resolution of symptoms.

Nancy Abraham, one of the original founders of NAMI, described a time in the history of Dane County when mental health services provided a true safety net for the mentally ill. Her son began to have symptoms of schizophrenia in his early 20s and was hospitalized with psychotic symptoms. During the early years, struggling with trying to keep him well she was at the same time working to found Alliance for Mentally Ill, primarily organized by parents of mentally ill children. Founded in Madison WI it eventually grew to become NAMI, national alliance for mentally ill. The organizers actively petitioned for resources to treat their mentally ill children. Once Dane County created a program where her son could receive comprehensive services, the Program for Assertive Community Treatment (PACT), both their lives turned around.

As Dylan Abraham wrote “It was the spring of 1977. At that time my life was in a shambles. I was hospitalized in a psych ward for the fourth straight year, desperately trying to find health and peace of mind. I had first been hospitalized in 1974, at the age of 18, with a diagnosis of schizophrenia. I had no job, no car, no money, and I was not attending college. I had hit rock bottom. What was I to do? A social work student at the hospital arranged to get me into the Program of Assertive Community Treatment or PACT. I rebelled ..but that spring I did join PACT, the program that was about to turn my entire world around into a life that I thought I would never reach.

PACT is a true community-treatment program that doesn’t use inpatient care unless there are no other options. Most staff time is spent out in the community, dealing with clients and their needs and problems on their turf. Clients and staff keep in touch on a day-to-day basis. Over 50 percent of PACT clients work. I began to appreciate what PACT was attempting to do and began to respect what staff accomplished. I wrote a book about my experiences with mental illness and I also began to write poetry. Now I am a staff member in the crisis service of a community mental health center…And the care provided by the staff can mean a break and a relief for the family; no longer do families have to be the treaters. Instead they can live their lives knowing their loved one is being treated and that eases the stress and strain on families. They are listened to and are respected by the program.” By the time Bill received services in Dane County the treatment model had shifted and PACT was only open to first break psychotic illness; thus he didn’t qualify.

Finally, and this haunts me, there is the radical notion that families keep their mentally ill family member at home, watched by family members and not allowed out without an escort. The question that still haunts me is what if I had kept him at home and taken care of him myself? It would have given me much more control on a day to day basis, being able to monitor him, watching what he did and making sure that nothing dangerous happened. Most importantly I could have monitored his medications to make sure he took them. As I think realistically, though, he would very likely have rebelled against being tightly controlled, perhaps running away or simply refusing to cooperate. I can imagine him holed up in his room, refusing to come out. But of course that is purely theoretical and I will never have the chance to see if there could have been a better outcome.