A Matter of Life and Death: What Are The Choices?

California Assembly chamber, photo by LWY on flickr
California Assembly chamber, photo by LWY on flickr

Yesterday, Mike White, former board member of the Death with Dignity National Center, spoke before the California Assembly Committee on Aging and Long-Term Care about Death with Dignity laws. Below is the transcript of his testimony.

There is tension between the beliefs that end of life choices should be founded mainly on respect for the sanctity of life or on compassion for those who are suffering: sanctity based on religious and moral principles or compassion based on respect for personal autonomy. I resolve the matter for myself by focusing on the belief that lawful physician assisted dying extends the lives of those who are terminally ill.

In California, a terminally ill person who wishes to have the benefit of all medical resources that are available, or not, has that choice. However, a person who wishes to have the assistance of a physician in the dying process—either due to unremitting pain and suffering or the absence of adequate quality in life—does not have that choice. As one opponent to legalization of assisted dying once said in a debate with me, “So long as there are bridges and tall buildings from which a dying person can jump, there is no need for a law that would permit a physician to prescribe medication to end a person’s life.”

For a terminally ill person who wishes to end his or her life, the nonviolent choices available in California are (a) terminal sedation—that is, being rendered unconscious by a physician to end unremitting pain and suffering—and withdrawal of food and hydration until death occurs, or (b) electing to cease taking all food and hydration until death occurs, in short, starvation. In either case, a person’s discomfort may be palliated by medical support and supervision.

In the more than quarter century that I have been part of the effort to adopt the Death With Dignity Act, a statute which permits a physician to prescribe life-ending medication to a competent, terminally ill adult, an important change has occurred in the medical community, in part as a result of the perceived threat of enacting such a statute. Palliative care as a medical specialty has developed and its implementation has greatly improved the care given to those who are dying and suffering. A focus on the relief of such discomfort has become nearly uniformly viewed as an important, legitimate treatment objective. The question remains then, if such improvement in care has been made, is physician assisted dying even necessary?

I believe the question that ought to be considered when it comes to the matter of how one should be treated as death approaches is a very personal one. The extent to which the law should define the choices we have is the debate that has been going on for three decades and more. If I wish to ask a physician to help me at the end of life by prescribing medications for self-administration, should I have such a choice as a lawful option?

Is the issue a legal question? Is it a matter of public policy? Or is it a question of morality, founded on religion or other basis? I believe the simple answer to each of those questions is, “Yes.” And that is the problem.

If it is simply a religious question, respect for each person’s religious beliefs resolves the debate. If it is a matter of public policy, the debate will be waged by generally well-meaning stakeholders each contending they know what is “best” for us. And if the question is only one of law, then you as legislators must deal with those stakeholders, religious advocates, public policy gurus, lobbyists and organizations committed to the implementation of law that advance their agendas. For some of you, it is a matter of dealing as well with your own personal religious, moral, and ethical views.

Three states, Oregon, Washington, and Montana, and a number of European countries, now provide that option for its residents. Oregon and Washington adopted the Death With Dignity Act by initiative process. A similar statute was offered by initiative in California in 1992, and most recently in Massachusetts last November. Though public opinion supported the passage of the Death With Dignity Act in both California and Massachusetts, both failed. Conservative religious opposition succeeded in defeating the measures by spending about five times more money than proponents of the Act.

In Oregon, there has been 15 years of experience in implementation of the Death With Dignity Act; in Washington, the statute was enacted in 2008 and implemented in 2009. In Oregon on average, 45 persons per year have availed themselves of the statute. There are no reports from either state of any coerced or involuntary deaths; that is because there are adequate safeguards—hurdles to overcome—before a person may receive lawful assistance in dying from a physician.

In Oregon, about 60% of those asking for prescriptions to end their lives have used them. The percentage of deaths for that state occurring as a consequence of the implementation of the Death With Dignity Act is 0.0015 per cent (15 ten thousandths). If translated to California, a state in which there are at present about 233,000 deaths per year, that number would be about 360 who might avail themselves of assisted dying.

In Europe, physician assisted dying has been legalized in Switzerland, Belgium, Luxembourg and the Netherlands. The laws in those countries either permit a terminally ill person to request the assistance of a physician in dying or have decriminalized physician assisted dying.

However, from my experience with terminally ill persons attempting to avail themselves of physician assisted dying in Switzerland, non-Swiss citizens are greatly discouraged from utilizing the process by significant administrative roadblocks and substantial expense.

Physician assistance in dying, when permitted, “benefits” only those who choose that option; it does not in any direct or meaningful way affect those who object to the practice.

My experience in working with people who gain the knowledge that they may control their dying process informs me that providing compassionate assistance at the end of life extends lives; it does not shorten them. It reduces anxiety of dying persons and their loved ones. Once having gained the control they desire to end their lives if suffering is too great, precipitous action is avoided—bridges and buildings return to the functions for which they were designed rather than jumping off points for those abandoned to die alone.

For the most part, people do not fear death—what they fear, and wish to avoid, is unnecessary suffering during the dying process.

There have been efforts in a number of legislatures over the years to advance the Death With Dignity Act as well as other failed initiative efforts. Currently, in New Jersey and Vermont, there are bills moving toward possible implementation. In Montana, physician assisted dying has been sanctioned by court proceedings, a process, unfortunately, which results in a lack of safeguards, a major reason to implement the process by legislation.

Public support for physician assisted dying has grown over the years. This is reflected consistently in our news media, as prosecutors resist prosecution of compassionate efforts that result in the death of loved ones and judges are reluctant to impose jail sentences in such cases. These are not the cases in which a person takes the life of another for financial or other personal gain. They are the cases in which relatives or friends are drawn into committing a criminal act in order to relieve the suffering of a dying person.

Were a convicted criminal allowed to starve to death by involuntary denial of all food and hydration or being thrown from a tall building to impose a death penalty, is there any doubt it would be determined cruel and unusual punishment under the Eighth Amendment? Yet, those are essentially the legal options available to a terminally ill person who is not a condemned criminal.

In a debate I once had with a person who opposed the Death With Dignity Act, he said in all sincerity, “You know, there is redemptive value in suffering.”

My response was and is that I respect the right of my colleague (opponent) to suffer as much as he chooses, to seek all the redemption he wishes or needs. I only wish that he could similarly respect, rather than oppose, the right of others to choose a more compassionate and legally authorized dying process such as that contemplated by the Death With Dignity Act of Oregon or Washington.

There are arguments against legalizing physician assisted dying: It is immoral, it is contrary to religious doctrine, it could be abused, it could be a first step on a slippery slope to taking lives involuntarily.

But as we contemplate the array of choices one might have at the end of life, should a request for assistance of a physician in the dying process be respected and not prohibited by law? Surely such a request if honored does not in any way impinge on the rights or values of those who oppose it, for they are in no way obligated to choose that option.

I appreciate this opportunity to provide a view about the choices that pertain for those who are dying. I know from my experience in working with those who request assistance in dying that when they know that they have control of the dying process, their anxiety is lessened and they do not seek a bridge or tall building from which to relieve their suffering.

Why is it that we are reluctant to trust the desires of dying patients to engage in decisions with their physicians that are founded on relief of suffering? What justification is there for the continued ineffective criminalization of acts which relieve anxiety, extend lives and remove government from one of those very unnecessary intrusions into the personal lives of citizens? This is a question that ought to be resolved between physicians and patients—not by prosecutors and judges.

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Our Mom Deserved More Choices

Liz Parker Gagne and Jeff Parker live in Massachusetts, and recently shared why they support the Massachusetts Death with Dignity initiative on Dignity 2012′s website.

Our mother passed away this summer at the age of 63 after suffering through a long battle with brain cancer. By the end of her life, after many treatments and attempts to cure her, it became clear that there would be no improvement. She desperately wanted to live but her illness was causing her unimaginable pain.

She required 24 hour care, could barely communicate, could no longer feed herself, and forgot how to swallow. We eventually moved her into a hospice residence, where she continued to suffer painfully until her body finally gave out.

Our mom did not want to endure constant suffering and did not want her two-and-a-half-year old grandson to see her in so much pain. We believe that our mom deserved more choices than what she was given, that she deserved to have the option to live her final days with dignity, surrounded by her family and enjoying her time with them; not wasting away before them.

We are voting yes on Question 2, the Death with Dignity Act, because we believe people should have more choices in how they live their final days. There’s no mandate, no requirement, just an option to make a different choice from hospice or palliative care. We would have missed our mom no matter when she passed, but to see such a strong, loving woman suffer needlessly for so long was horrible, and we wouldn’t wish it on any other family.

Please, join us in voting YES on Question 2 in November, and together we can make sure our loved ones don’t have to suffer like our mom suffered; together, we can help give terminally ill patients another choice.

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