Asking for permission to die with dignity

As children, we learn to “ask permission.” Seeking permission is one of the fundamental building blocks of learning. Basic psychology teaches us about the id — that we all have impulses and sometimes we need to restrain the urge to do something — to curb the innate desire to take before asking. We want to know that it is all right to move ahead.

So what about at the end of life: Is there a point at which we no longer have to ask permission when it comes to dying? Or — if we want that permission, who can we ask?

The question of “permission to die” is at the heart of the recent debate over Brittany Maynard, the 29-year-old woman who availed herself of the opportunities in Oregon to end her life through active participation in dying. Maynard suffered from brain cancer and sought to alleviate her suffering by using life-ending drugs, becoming one of the most compelling spokespersons for advocates of assisted dying after a video posted Oct. 6 showed her talking about her decision to take control over how she dies.

Maynard, diagnosed with aggressive and terminal brain cancer in January, was given six months to live by doctors. She moved to Oregon to access that state’s Death With Dignity law, which allow the terminally ill to request death-hastening barbituates from their doctor according to certain safeguards.

{mosads}What many people do not realize is that Maynard, like other patients in her situation, often get “permission” to die from loved ones and even legal permission to do so, but do not act on it immediately or even ever. In Vermont, 90 percent of the patients who obtain the means do not take the life-ending medication. In her case, Maynard waited a few times before going through with her plan. Maynard said last month that she tentatively planned to take the deadly dose Nov. 1 so that she could celebrate her husband’s birthday in the days before her death. She said she wanted to take one final trip — to the Grand Canyon — to cap a lifetime filled with adventures across the globe. She made it, calling the Grand Canyon “breathtakingly beautiful” in an Oct. 24 blog post. When she felt better after that trip, she postponed the decision. Ultimately, she took the life-ending prescription after suffering from increasingly frequent seizures and severe neck and head pain, according to a spokesperson for Compassion & Choices, the nonprofit she worked with to advocate for expanding death with dignity laws.

What Maynard wanted was the permission to die and the freedom to let the choice of timing be hers, and hers alone. An eloquent and dignified woman, Maynard explained her decision in a blog post in early October, writing, “I did this because I want to see a world where everyone has access to death with dignity, as I have had. My journey is easier because of this choice.” Maynard said she searched for clinical trials and a miracle before realizing death was imminent and she wanted to plan for it. She said last month that she wanted to go out on her terms, with music softly playing in the background, while lying in the bed she shares with her husband. “I’ve done everything in my power to plan for what makes sense — to try to do what’s right.”

Not everyone will have the ability to move to a different state at the end of life. Maynard was able to move to Oregon after learning California was not among the five states that have Death With Dignity laws. (Washington, Vermont, Montana and New Mexico are the other states.)

Some states, like Massachusetts, have voted down active dying laws because of strong opposition based on weak arguments. Critics say that dying with dignity is akin to “assisted suicide,” which it is not, and point to the potential for abuse of the statute. Others point to hospice as the best and only solution to terminal patients. Still others argue that people need the closure that comes with dying naturally.

It is time to refute all the arguments against active dying:

1. You are legalizing suicide. This is not about “suicide.” This is not about hating your life and wanting to end it; but rather, realizing that a painful end is near. It is about wanting to participate, legally and actively, in an end-of-life decision. With the permission of loved ones, it is about empowerment and coming to a thoughtful conclusion about how to spend your last days on Earth.

2. Active dying could lead to abuse. Many things can lead to abuse. Yes, there could be situations in which the wrong circumstances accompany active dying. Nobody wants to see a mentally ill patient or an abused elderly person forced over the edge. Nobody wants to see a greedy family or business seek to profit from early death. That is precisely why safeguards exist in states like Vermont and  Oregon to avoid that kind of abuse.

In Vermont, the rules state:

• The patient’s primary physician and a consulting doctor must agree that the patient is suffering from a terminal illness; 
• The patient is capable of making an informed decision to request death-inducing drugs; 
• The patient must request the drugs twice, with 15 days separating the first and second requests; and 
• The patient must administer the drugs to themselves, and the request for drugs must be witnessed by two disinterested people, defined as those who are not relatives or potential heirs, employees of healthcare facilities where the patient is being treated, nor his or her doctor. In states that allow it, only residents who have relationships with local doctors can get the prescriptions.

New Mexico is also clear that the person who is seeking to hasten their death must be able to make the decision. In its most recent rule, the New Mexico Supreme Court has authorized doctors to provide lethal prescriptions for a “competent, terminally ill patient to choose aid in dying.”

3. Hospice care is a better option. Palliative care may not be right for everyone and may not end all suffering. It is also still evolving and its efficacy is uneven throughout the country. It is worth recalling that hospice legislation was not introduced in the United States until 1974 and not included as a Medicare benefit until 1982. Hospice care did not become a military benefit until 1991. As a society, we evolved into the notion that human beings should have palliative care options in their last months of life. So, too, should human beings have permission to have access to the full panoply of options at the end of their life, including active dying.

4) Active dying does not enhance closure for loved ones. The argument that natural dying often provides a period of reflection and mourning that abrupt death does not is only partially valid. Many people die suddenly and their loved ones move through the grieving process. Similarly, with a long and protracted illness, anticipatory grief often accompanies the final stages of life. A legal, active dying process in the case of a terminal patient affords peace of mind and permission to die if the individual chooses to exercise their right. Many will end up not using the medications. The notion that all dying adults needs closure with friends and family so as not to “rush into” dying is absurd: An active decision to hasten death can be made with much reflection and discussion with loved ones.

Time is relative at the end of life and only the person suffering can truly determine how much time is enough. Regardless of religious belief, or lack thereof, human beings like to be in control of their lives — and deaths — and simply want permission to go. Choosing life and choosing the time and manner of death are personal decisions. What is required is the license to choose and the freedom to participate in the most important stages of life. There is no slippery slope here, except a gentle slide into peaceful respite from pain.

Sonenshine is former under secretary of State for Public Diplomacy and Public Affairs and teaches at George Washington University’s School of Media and Public Affairs. Feinstein is a grief support counselor who has listened to survivors lament the final stages of their loved ones’ lives. She was formerly the associate administrator at the Department of Health and Human Services.