Confessions of a FEN Coordinator

As a Coordinator for the Final Exit Network (FEN), I have many frustrations over my inability to help many people–far too many in my estimation.  For others to understand these failures, I need to explain how FEN operates.

When someone wants to apply for FEN’s education and training in how to hasten their death, they must have a terminal illness, intractable health problems that have produced suffering beyond that which they are willing to endure, or a neurodegenerative or neurological condition that will rob them of their ability to continue to live a satisfactory life.  Such conditions may include ALS, MS, Huntington’s, Parkinson’s, dementia, and stroke, among others.

FEN is committed to helping people learn how they might have a “good death,” a term promoted by Derek Humphry, one of the founders of Hemlock and also of FEN.  FEN understands a “good death” to be one that is “safe, certain, painless and peaceful.”

To apply for FEN’s training and education services, potential applicants reach FEN by telephone or through a contact email form on FEN’s website.  Those messages are received by an answering service or a FEN volunteer and are forwarded to Coordinators, who are responsible for contacting the person directly by phone.  Coordinators explain the application process, which includes collecting the person’s relevant medical records that confirm their diagnosis or diagnoses, and a letter to FEN explaining why they want Exit Guide services.

Once the Coordinator has these records, a telephone interview is scheduled with another FEN volunteer to gather additional relevant information.  That volunteer writes a report of the interview and sends it to the Coordinator, who compiles all of this information into a file to be used by FEN’s Medical Evaluation Committee, a three-member group of volunteer physicians, who determine whether the applicant satisfies FEN’s criteria for training and educational assistance.  If so, two Exit Guides are assigned to train and educate the applicant about how to use inert gas to hasten the applicant’s death when and if the applicant decides to do so.

Often, when people contact us they have waited until they are desperate to die to end their suffering but are no longer physically able to hasten their own deaths; or they are no longer mentally competent to make that decision for themselves.  These are the people, I confess, who give me the greatest heartaches.  But there are six other categories of people that I have difficulty helping.  Their welfare is also important.  They are those with alcohol abuse problems, those with mental health problems, those who appear clearly suicidal, those with poor access to needed medical care, those with insufficient financial resources, and those with no one to serve as a caregiver for them.

Occasionally, I am contacted by someone who seems obviously intoxicated.  The symptoms I usually encounter are slurred speech, excess profanity, inability to reason logically, and inability to stay on topic. In instances when it appears that they may be a qualified applicant for FEN services, I request that they call me back at a time when they have not been drinking.  Seldom does this result in a call back.  When circumstances permit, I suggest they seek out an alcohol treatment program.

Those with mental health problems can be frustrating because their problem is not their physical health, but a seemingly insoluble mental health issue.  FEN does not help people learn how to hasten their deaths if they do not have a significant physical health problem that renders their lives insupportable or unbearable.  FEN cannot properly evaluate mental health issues using only medical and psychiatric records.  

Judging from people who have contacted me through FEN, many who have intractable mental health issues are ready to give up on life.  Some have tried every source of help they have been offered, but nothing has solved their problems.  Some have endured decades of suffering without more than temporary relief.  Because I had such a friend who killed himself with a shotgun, these applicants concern me greatly.  I have written more about mental health and hastening one’s death here.

Occasionally, I talk with someone who wants me to tell them on the phone how to end their own lives.  Whatever other category such persons may be a part of, they seem suicidal to me.  In all such cases, I refer them to suicide hot-lines or crisis services.  Often, while I am talking to them, I am able to find local resources they can contact.  Other times, I provide information about a national organization that may be able to help.  Some of these people call back, often more than once, trying to get me to give them details about hastening death that I cannot provide.

My current Coordinator responsibilities are for seven states with large rural and small-town populations.  Many of the nearly 30 million people in the US without adequate health care live in thinly populated areas and do not have access to the care they need.  From conversations with them, I know that some people are ready to die because they know they can’t receive the health care they need to continue to live meaningful lives without unacceptable suffering.  Some of this group fall into my fifth category–their financial resources are so limited that they cannot afford the medical care that would allow them to live longer.  They include some who receive Medicare and/or Medicaid services, a fact that demonstrates the inadequacy of both systems.

These last two groups also overlap with those who do not have a caregiver, which could be because of the inadequacy of Medicaid, their inability to afford caregiver services, the absence of family members who could provide such care, and/or the lack of affordable nursing home beds in their areas.  Of course, many people have commented that they would rather die than go to a nursing home, a view that I understand based on experiences of my own friends and family members.

FEN can do nothing to ameliorate these six conditions.  We can make referrals, look for local resources, and try to encourage such people to reach out for help.  But many people have become exhausted with a medical and care system that is concerned more with the bottom line than with the well-being of people in need.  These callers don’t have the physical stamina or emotional reserves to take advantage of what limited resources are available.  Without a strong advocate working directly with them, they truly are left with no hope for a satisfactory future.

Those are my confessions of inadequacy–inadequacies that are in some ways personal and inherent in my Coordinator role, but are mainly cooked into our society.  Until we develop a more compassionate culture in the United States, a culture that says all people are worthy of health, medical, and psychiatric resources that allow them to lead meaningful lives until they have peaceful, pain-free deaths, we will wrestle with the inadequacies of what FEN can do to help people who need relief from unwanted suffering at the end of life.  Even those who do not face the six inadequacies I have identified need the ability to escape unwanted suffering if they choose.  

Sadly, I cannot foresee a time when FEN will not be needed.  Indeed, one of the near universal themes that I encounter, and which lets me know that our services are vital, is the thanks given by FEN’s clients for our help.  Many are amazed that an organization like FEN exists.

The Ancient Greeks named four virtues: temperance, wisdom, courage, and justice.  I could argue that the last three apply to all those who seek FEN’s help.  I know that they all have courage and the wisdom to know that all life comes to an end, and that it is not fair or just for that end to include unwanted suffering.