Article: Advance Living Directive (Part 1 of 4)

Bert Cave
President of Support For Home
Sacramento, California  95825
916-482-8484

Member of the national ElderCare Matters Alliance, California chapter

At Support For Home and other good home care agencies, our mission is to help people live at home just as long as they want to and safely can. We, along with the courts and gerontologists, believe that home is normally the place where quality of life is the highest.  However, we believe that every individual and every family should, in advance, determine the criteria which establishes home as a viable living space – either independently or with home care services.

In this series of four articles, we will talk about what we consider some of those criteria. There are very few solid lines (“If I’m on this side of the line, all is OK; on that side, I need assisted living or …”). However, there are a number of factors we feel individuals and their families need to bake into a fairly formal plan.  That word is key.  Where we live, what help we need, if any, should be part of a plan for our life, and plans are made in advance.

Many of us have or are developing trusts, living wills or Advance Health Care Directives (AHCDs) — whatever we may call them.  These AHCDs specify when we want treatment and when we do not, to prolong life, for example.  They don’t usually cover, however, the decisions about where we should live, under what circumstances.  We think this is a significant gap in families’ and individuals’ plans for the future.

What we are suggesting, then, is something called an Advance Living Directive™ (ALD) – “under these circumstances, I should / must be allowed to live at home; under other circumstances, I should / must be placed in (a) assisted living or in (b) a skilled nursing facility or (c) a memory care facility…”  Identifying the “circumstances” as clearly and precisely as possible is the key to making sure the right decisions will be made (by me, a trustee, or the courts), when the time comes.

What we want to do is to eliminate as much “gray area” or “overlap” of conditions as possible, to reduce ambiguity or confusion for whomever is making the actual decision about where we live.  The cleaner the lines, the happier we are all going to be – and that includes our families.

Eliminating emotional debate in a time of crisis is definitely one goal.  If we, the family, have good discussions about the various factors that go into an Advance Living Directive, before there is any real indication of concern, our decisions are likely to be better and made with less emotion.  Later, when the time comes to implement the decisions incorporated into the Advance Living Directive™, the family and the individual are likely to encounter far less trauma.

The discomfort that “both sides” share about those topics comes, to a large degree, from two factors:

• The conversations come far too late, in most cases, when the need for care is painfully obvious to the children or perhaps a spouse, increasing their emotional level, which never makes conversations dispassionate and calm.
• The conversations are not driven by objective criteria, observable by both the parents and the children, as well as any outside facilitator, such as a social worker or medical professional.

Our goal with the Advance Living Directive™ is to help create such an objective, behavioral tool, so that the emotional content of the discussions can be reduced.  It is a tough topic, so we are not pretending that it solves all issues.  However, using the Advance Living Directive™ is something that we can do at any time, just as we do or should do with our Advance Health Directive.  We can make decisions at 40 that may endure for the rest of our lives, without the need for last minute, emotion-laden, crisis-driven discussion.

The free tool we have developed uses research on Activities of Daily Living and Instrumental Activities of Daily Living (ADLs and IADLs).  We created a scale from total independence, with no assistance required by a caregiver, through a score that would lead us to determine that staying at home was not safe, even with 24-hour non-medical care.  The tool is not a medical diagnosis.  It is purely about our ability to perform the normal behaviors or activities we go through each day.

In the next article in this series, we will present the ADL and IADL skills matrix and how it can be used for planning an Advance Living Directive™.