Desire for Dignity: Part I

Death with Dignity Act has 'Catch-22 ' requirements that many are unable to meet

In one of the most famous and enduring dramas ever written, William Shakespeare poses perhaps the fundamental question for each of us, "To be or not to be?" That is the question that Florence resident Bruce Yelle asks himself on a regular basis. And the answer he has settled upon, at least for today, is that he wants to continue "being." But that could soon change. Yelle suffers from a number of life threatening diseases, the most debilitating of them being Parkinson's . He also has Diabetes and exhibits many of the more acute symptoms that accompany his illness. His circulation is not good and he has numbness and pain in his extremities. His vision can become blurred and cuts and bruises heal slowly and painfully. His ability to move about freely is steadily decreasing while his overall level of pain continues to increase. While Yelle knows he wants to continue "being" for now, he also knows he does not want to be at a place near the end of his life where he is in pain, confused and unable to care for himself or worse, be unable to communicate to others that he wishes to exercise his right as an Oregonian to die with dignity .
   His concerns about issues associated with quality of life and self-determination have compelled Yelle in his decision to eventually take his own life.
   Yelle says he doesn't want to die today or tomorrow or even next week. But some day, in the not too distant future, he will want to avail himself of Oregon's Death with Dignity Act (ODDA).
   The problem is, while the intent of the ODDA is to ensure that citizens are provided a safe process to legally end their life, individuals have to meet a number of criteria to participate in the ODDA program. Since the ODDA was enacted in 1997, 1,554 individuals have received prescriptions for life ending medications. Yelle's deteriorating mental condition may eventually preclude him, or his loved ones, from engaging in the legally-sanctioned process designed to end his suffering. Ironically, while Yelle would likely meet the ODDA's criteria today, there's a good chance he won't at the time when he'll want it most. "The law now says that I have to be of sound mind. So I could say, now, that I don't want to live with this condition," Yelle said, "But as it worsens, I may not be able to use the law because I may no longer be considered of 'sound mind' as I get closer to actually dying."
   These challenges have not prevented Yelle from planning his next step.
   "I am working on writing a petition to get the law changed. I want to make sure that someone with a terminal disease that has no chance of recovering, regardless of whether they have six months to live or not especially if it is a neurodegenerative disease that they can make arrangements to end their life while they are still rational," he said.
   Yelle is fortunate that he has adequate health care for his current level of need. He also has a partner, his wife Kathleen, to help with his physical challenges and to support him on the days that his emotions are raw.
   But while his health challenges are manageable at this point, the nature of his illnesses dictates that his physical and mental abilities will continue to diminish in the months ahead.
   Yelle has come to terms with the inevitable outcome that awaits him; he knows that he will eventually die from his conditions. In the meantime, he wants to know his wife and friends won't have to care for his increasing physical and mental needs as his condition worsens.
   What is uncertain is how to proceed with planning his death to ensure his own sense of dignity
   "I want to be able to draw the line now. I do not want to have someone toilet me and feed me," Yelle said emphatically. "I do not want to be dependent on others for these and other personal hygiene tasks. And I should not have to." During this stage of his illness, pain, grief, anger and depression are a constant presence in his life.
   One of the conditions associated with Parkinson's is dementia. The ODDA requires that the individual applying for the fatal medications be of sound mind, which is a subjective term. It also requires that the individual have a confirmed diagnosis of a terminal condition which will lead to death within six months.
   Neither of these requirements may be possible in Yelle's circumstance. His unusual combination of symptoms are destroying his body and mind at different rates. And even though his long-term prognosis is indeed terminal, he may not ever be able to declare that he has only six months to live, as required by the ODDA.
   This leaves Yelle in limbo, not knowing when his physical condition will degenerate to the point he no longer wishes to live while at the same time being uncertain when his mental state will be considered too "unsound" to make his final decision under ODDA requirements.
   Beyond that, Yelle worries that his mental condition will be so diminished at some point in his life that he will not be aware or cognizant enough to express his desire to die.
   This is the unintended quandary that Yelle and other Oregonians with unique illnesses and unusual circumstances face each year. While the ODDA was created to provide a certain level of dignity for those whose lives are coming to a painful or distressing end, it also includes unforeseen gaps Oregonians can fall through. Part II in this three-part series will continue next Wednesday, Feb. 22, with a look at Yelle's efforts to change existing legislation, as well as perspectives from State Rep. Caddy McKeown, State Sen. Arnie Roblan, U.S. Rep. Peter DeFazio, U.S. Sen. Jeff Merkley and U.S. Rep. Ron Wyden on the gaps within Oregon's Death with Dignity Act.
   The series will conclude on Wednesday, March 1.

Note: This is part 1 of a 3 part series. Find additional installments in the Special Series Archive, located here.