The Last Day's of Bruce Lewellyn - Why Living Wills Sometimes Don't Work (Perhaps Shouldn't Work)
Last summer's political debate about the health care bill's inclusion of end of life planning, and "death panels", resulted in the removal of those provisions from the bill before it's passage earlier this year. End of life planning decisions have been left to the individual, the individual's family and the individual's physicians. That doesn't mean the discussion is any easier, either before those end of life decisions must be made, or what happens when those decisions are staring family members in the face of the incapacity and approaching death of a loved one.
The recent story of Bruce Lewellyn, as provided by the New York Times this past weekend, is illustrative. Mr. Lewellyn, who was quite wealthy by most any standard, began to physically deteriorate in his 80s. He provided his wife with a power of attorney for health care, and a living will. As his health continued to deteriorate, his wife placed him in a nursing home, and according to him, she "abandoned him to die" in the nursing home. He convinced three of his closest friends to petition the court and become his guardians, which they successfully accomplished. After they removed him from the nursing home and established him in a comfortable apartment, with round the clock care, his health improved for a while. His attending physician prescribed a feeding tube for him. His wife then sought to have the feeding tube removed because its use was contrary to Mr. Lewellyn's statements in his living will. The court determined that the legally appointed guardians had full legal control over Mr. Lewellyn's medical treatment and refused to order the removal of the feeding tube. Mr. Lewellyn lived for another couple of years with the feeding tube. After the controversy over the feeding tube, Mr. Lewellyn's guardians reached a financial settlement with his wife for her to be removed from his life. The only unsettled issue was whether the wife would be the executor of his estate as provided in his will. After the probate judge met with Mr. Lewellyn, with court reporter present, and the conversation being transcribed, the judge announced that Mr. Lewellyn did not want his wife to participate in his post death affairs. The settlement was resolved and Mrs. Lewellyn removed herself from her husband's life and financial affairs.
Was the court and Mr. Lewellyn's guardians "right" in allowing the feeding tube be inserted and maintained even though his written living will from prior years expressly stated that he did not want his life to be extended by artificial means, including the use of a feeding tube? Was his wife "wrong" in seeking the removal of the feeding tube in accordance with his written living will, notwithstanding his own contemporaneous statements that he wanted to have the feeding tube? If you read the story as provided by the New York Times, it is obvious that he continued to have "quality of life" after the feeding tube was provided, for at least a couple more years.
The Lewellyns' dilemma is not uncommon. Often there is a living will in existence, where the literal following of the living will results in the loss of opportunity for the elderly and disabled to live for a longer time, but with no guarantee that the additional time would be "quality" time. On the other hand, there are also many examples of physicians or family members, or both, who refuse to honor the written living will of the elderly or disabled person, and thus allow for an unnecessarily extended period of false hope, potentially significant pain, medical expense, and little or no additional "quality" of life.
These issues help explain why many critics of the living will proclaim that they simply don't work. Judith Graham, a columnist for the Chicago Tribune, in a recent article suggested that the real issue with living wills is not necessarily the written documents, but the failure of physicians and family members, including the patient, to engage in meaningful conversation so that the patient's desires, and needs, are the primary driver of end of life choices.
Frank Tadeo, a critical care nurse, maintains a blog (Living Will Choice) where he explores the decision making process and how often the living will doesn't work as planned by the patient. AARP has provided it input on the issue of whether living wills have failed in its April bulletin.
The consensus seems to be that the living will has a place and a purpose. What is needed in addition to the written document is for there to be open communication between family members and treating physicians, along with the patient, to that the patient's desires, within the context of full knowledge and understanding of the patient's condition from the attending physicians, so that all affected parties have the information they need to decide whether a living will should be followed or ignored in any given situation.
We provide a free statutory legal form Florida living will on our website, along with a free statutory legal form Florida health care power of attorney (we call that a Designation of Health Care Surrogate in Florida). We also provide a sample copy of a Five Wishes Living Will on the website as well. You may also want to review the Florida Department of Elder Affairs brochure, Making Choices: Beginning to Plan for End of Life Care.
The issues surrounding end of life choices, living wills and other advance directives, can be very significant estate planning and asset protection issues, and deserve serious consideration by each person, individually, as well as within the context of family, and with the ultimate consideration by each person's physician. As is obvious from the Bruce Lewellyn story, a clear understanding by all parties, after open discussion, can avoid hurt feelings and expensive attorney's fees. It's worth having the discussion.
What are your views on the efficacy of the living will? I welcome your comments.
Posted by Randy Coleman at 5/9/2010 8:47 PM 
Categories: Living Will, Advance Directives in Florida, Guardianship, Designation of Health Care Surrogate
Tags: designation of health care surrogate guardianship law health care power of attorney advance directives plenary guardianship living will
Categories: Living Will, Advance Directives in Florida, Guardianship, Designation of Health Care Surrogate
Tags: designation of health care surrogate guardianship law health care power of attorney advance directives plenary guardianship living will
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