Do we need gatekeepers?

(Editor’s note: The following is by Faye Girsh, founder of The Hemlock Society of San Diego, and co-founder of Final Exit Network as well as a member of its advisory board. – KTB)

noun: gate-keeper

1. an attendant at a gate who is employed to control who goes through it.
2. a person or thing that controls access to something; “the primary-care doctor serves as the gatekeeper to specialists”

If you are looking for a peaceful death, you have the choice of finding assistance or figuring out how to do it yourself (DIY). Many manage the DIY route, not wanting to have anyone else involved in their decision or resenting that they have to prove to someone that they are “suffering enough.”

The most popular model of an assisted death in the US is medical aid in dying, which first became legal in Oregon in 1997. Now, 23 years later, some version of it is the law in only nine states and Washington, D.C.

To get assistance, which is a prescription for lethal medication, the supplicant must find two doctors to certify that she has the capacity to make the decision and has six months or less to live. If she cannot convince the gatekeepers — the doctors — then no meds.

The criteria used by Final Exit Network are much broader and do not require a terminal diagnosis, but there are still gatekeepers. If you pass your initial interview by a trained volunteer, a medical evaluation committee will review your records. This is the only step where medical doctors are involved. Should you pass this hurdle, the senior exit guide can still veto your application after the first personal visit or any time during the process. So, even though a prescription is not required, you still have to convince others that you are deserving.

Another possibility is terminal sedation. In this model, the person to convince is your doctor, who could be a hospitalist, a palliative care specialist, or a hospice doctor. Generally it is not you doing the convincing, because you will likely be unconscious. The doctor must see your condition as intractable and decide that large doses of medication are necessary to relieve your suffering. Once again, a doctor is the gatekeeper.

Suppose you decide an organization such as Dignitas is your best option. You must fill out forms about your situation, agree to pay $10,000 if you are able, and demonstrate your need for a hastened death and your mental competence. And Dignitas is in Switzerland, so you’ll to make all the arrangements necessary for international travel. Dignitas is a wonderful service but very much in the gatekeeper model.

It is not really surprising that there is a gatekeeper that has to approve your exit from life. In any form of assisted dying, the assister usually wants to determine who and why they are assisting. Kevorkian certainly did this, although many thought wrongly that he helped everyone who asked. The models in the Netherlands and Belgium accept children, psychiatric patients and now demented patients, but they exclude non-residents.

There have been operatives whose criterion for providing assistance is how much money you are willing to pay. Objectors to assisted dying often use corruption as a reason to oppose it.

What about voluntarily stopping eating and drinking (VSED)? You should be able to pull that off at any point in your life. It becomes easier as you are older, more frail, and may have lost your interest in eating. You don’t really need to get permission to do this. However, it is almost impossible without help. Sometimes hospice professionals can help but a lot of gatekeeping is necessary since they say they neither hasten or prolong dying. But for VSED you will need medications — to ease anxiety, promote sleep, control pain, or even to speed up the process. As you go in and out of consciousness, you will need to be diapered, turned, and cleaned. You will have to convince someone, even a loved one, to go along with your wish and to watch you dehydrate — without yielding to the temptation fo provide food or water. Those helpers need to agree that you have a good reason for doing this.

The only model where assistance is possible without criteria is fictional. In the movie Soylent Green, Edward G. Robinson’s character has had enough of the stultifying shortage-racked, over-populated life in the late 21st century. He goes to a cheerful, well-maintained building where he says he wants to “go home.” The only questions asked are about his favorite color and favorite music. He is escorted to a bed in a cheerful yellow room, shown pictures of running streams, birds, flowers — the earth as it used to be. Soothing music by Beethoven is piped in. Then another pleasant person comes in, gives him an injection and he goes into a peaceful sleep. (Spoiler alert: His body then becomes socially useful, i.e, turned into “soylent green.”) That’s a model of suicide on demand.

It is an appealing thought — a peaceful assisted death with no questions asked. But, as a retired psychologist, I cannot agree that we should have no restraints or offer no alternatives to suicidal people. If the right pills were available, several of my clients would probably have died. And, it could be argued, so what? Even if we could offer the right lethal pill or machine, it might be good to provide voluntary counseling to see if there are better solutions, treatment, or some other help.

Some 48,000 people “committed” suicide last year in the U.S. without the help of a gatekeeper. These likely were violent, lonely events that traumatized loved ones. They might have been people who would have had good lives if their temporary suffering had been alleviated. Maybe some people cannot be saved, but wouldn’t it have been better if they had a non-violent alternative as in Soylent Green?

Some desperate people are like Robin Williams who was in the throes of Lewy Body dementia when he killed himself. There is no excuse for not providing a legitimate, legal way for someone like that to die. The same is true for people with painful non-terminal conditions.

Leaving the hypotheticals and fantasies aside, there are some models that help, or advise, without a gatekeeper. One is Exit International, led by Dr. Phillip Nitschke, who has been developing methods people could use on their own. Some of these, like the inhalation of inert gas, are now evaluated and work well. Others, like the Sarco or sodium nitrite, do not have a substantial body of data about safety and efficacy.

It is possible to accumulate your own “suicide kit” with medications and methods. That would be a comforting thought if we were sure of what to include in it and were sure it would work without someone with expertise available. In his book, O, Let Me Not Get Alzheimer’s, Sweet Heaven, Dr. Colin Brewer quotes neurosurgeon Henry Marsh: ” … my most precious possession, which I prize above all my tools and books, and pictures and antiques … is my suicide kit, which I keep hidden at home. It consists of a few drugs that I have managed to acquire over the years.”

Doctors are in the fortunate position to have access to the right drugs. No one knows how often the doctors use the drugs or help each other. The rest of us must figure out another way. Do we lie to our doctors about needing pain killers or anti-depressants? Which drugs do we really need and how can we be sure they will work? Even a gun has a 15% failure rate. The internet is full of methods, mostly violent or untested.

When abortion became legal, the underground, dangerous, “coat hanger” DIY practices mercifully disappeared. Most people might not object to a rational gatekeeper system if it were inclusive and non-punitive.

You can talk to professionals about your suicidal thoughts now, but you risk being locked up as a psychiatric case “for your own good.” Though gatekeepers are necessary in the Belgian and Netherlands models, they offer a wide range of welcome alternatives that make it preferable to most DIY endings.

The argument for a DIY model is valid, especially in the 41 states where medical aid in dying is not legal. You may be okay if you can collect your own stash of meds — and you know what you’re doing!

The ultimate DIY manual is Derek Humphry’s book, Final Exit, The Practicalities of Self-Deliverance and Assisted Suicide for the Dying, which has been translated into 13 languages and is in its 4th edition (on the ERGO website in a digital edition). There are no statistics on how many people used this book. Many of us in the Right to Die movement keep it on a shelf, not far from our insurance policies. Derek noted that when his book came out there was not an increase in suicides but in more peaceful ways people ended their lives.