Column: Crafting a living will, waste of time and money?

It is grotesquely unfair to put healthcare workers and families at war, all the while spending large sums of money on legal costs.

The family of Margaret Bentley, from Abbotsford, recently launched a civil suit against the nursing care home in which she is living and the Fraser Health Authority, over their refusal to acknowledge the “living will” requests of Mrs. Bentley who, more than 20 years ago, drew up the legal document requesting that she be allowed to die by not feeding her should she ever reach the final stages of dementia.

The home and the FHA have, of course, received a legal opinion that denying her food has the potential of raising charges of neglect under the Adult Guardianship Act. To make matters worse, the FHA has denied the family any option of moving Mrs. Bentley to another facility or taking her home.  In essence, they have decided that neither her wishes, nor her family’s wishes, can supersede their legal opinion.

It’s easy to take sides as, obviously, lawyers have differing opinions and the legalities surrounding such circumstances seem grey at best.  As I have stated more than once, federal and provincial legislators should be making it a priority to put in place laws that make the options clearer.  It is grotesquely unfair to put healthcare workers and families at war, all the while spending large sums of money on legal costs.

Mrs. Bentley knew what she wanted in 1991 when she wrote her living will.  A former nurse who had worked with patients with advanced Alzheimer’s, she understood clearly the challenges of the disease and a full eight years before she received a diagnosis of being in the early stages, she followed a legal process to ensure no one would have to make a decision on her behalf.  Many, many others have living wills.  Are they all useless pieces of paper?

I am going to follow this case and, in a selfish way, I certainly hope that it will continue even if Mrs. Bentley passes away.  You see, I have a living will that sets out certain end-of-life parameters that I wish to have respected should I reach those boundaries.  I have done so to offer my family peace of mind in their decision-making.  I sat with a lawyer for some time talking about this option when I was updating a simple will and agreed that formulating such a document is probably more important than distributing what paltry assets I’ve accumulated in my life.  Was this a waste of time and money on my part?  Am I doomed to the whims of bureaucrats regardless of the indignities my body may be suffering and my family is forced to endure?

A friend of mine recently lamented that he had visited his mother in a home and for the first time ever, “the lights were on but there was definitely no one home.”  She did not recognize him and despite much time spent talking about family and events from the past she was completely unable to place him in her life.  He commented that his mother’s body was there but his mother was gone.  Now he and his family must simply wait for an indeterminate period of time during which they will pray she is well cared for and at peace.

I know my friend’s mother and my own mother do not have living wills.  It wasn’t common for such documents to exist, or perhaps more accurately, for people to have those kinds of discussions twenty years before they might be needed.  In that sense, Mrs. Bentley is, indeed, a ground breaker and the legitimacy of her explicit and well-planned end-of-life wishes may set a precedent that will help the rest of us have our wishes respected.

Graham Hookey writes about education, parenting and eldercare. Email