No easy answers in end-of-life care

Bill Harris' fight to honor the wishes of his wife, Nora, suffering from the late stages of Alzheimer's disease, is a heart-wrenching story that cries out for some kind of resolution. But the issues involved are complex, and there are no easy answers.

Nora Harris, a bright, highly educated woman, was diagnosed with early onset Alzheimer's in 2009, when she was 56. The couple moved to Ashland in part because long-term care costs less here than in California.

Now in Fern Gardens, a Medford memory-care facility, Nora is unable to communicate or feed herself. When her condition was diagnosed, Nora and Bill drew up an advance directive for her care, indicating she did not want artificial nutrition and hydration when she became incapacitated.

Staff members at Fern Gardens have been spoon-feeding Nora at the direction of the state Long-Term Care Ombudsman's office, which maintains the facility is legally obligated to help her eat. Bill Harris, convinced his wife would not want to be spoon-fed if she could express her preference, took the state to court, but lost.

Circuit Judge Patricia Crain, who told Harris it was "not a happy decision" and that Nora "would hate this," said she could not order the nursing home to stop feeding Nora.

Bill Harris says he is convinced the decision ignored the advance directive, which he believes does not allow for spoon feeding. But he chose not to appeal Crain's ruling because of the expense and the likelihood that his wife would not survive the 18-month process. Her death would end the lawsuit.

It would be easy to blame the ombudsman's office, the judge and the nursing home for resisting what appears to be a clear case of a dying patient's wishes being ignored. But it would be wrong.

It might seem that spoon feeding and supplying nutrition with a feeding tube are both artificial means of prolonging life. But there is a qualitative difference. A patient with a feeding tube has no control over what is delivered through that tube. But a patient being spoon fed must actively participate by accepting the spoon and swallowing the food.

That may be pure reflex, as Harris and his attorney argued in court, but the nursing home staff can't be asked to make that determination.

Harris's attorney says he will advise clients drawing up advance directives to be very specific in stating that they don't want spoon feeding. But even that may not be enough, depending on what the state — and potentially the courts again — have to say about it.

Society has come a long way in recent years in dealing with end-of-life issues. Physician-assisted suicide, illegal and unthinkable not long ago, is now permitted here and in four other states.

Eventually, the law may catch up with situations such as that of Bill and Nora Harris. Unfortunately, it won't likely happen in time for them.

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