I had the opportunity this week to attend a seminar provided through the Hospice Foundation of America titled The Longest Loss: Alzheimer’s Disease and Dementia. One of the presenters, Dr. Kenneth Doka, referred to advance care planning as “drawing a line in the sand.”
Initially, a line in the sand is drawn to signify a point at which no one will cross. But once water flows over the sand (change!), the line blurs or outright disappears. Then, it becomes time to re-evaluate and draw a new line.
An interesting fact about effective advance care planning (ACP) is that it’s never a once-and-done act. It demands multiple conversations, oodles of information, shared decision-making, and the ability to plan for, and evaluate, changes as they occur. Hence, the line in the sand metaphor.
Your initial line in the sand may be a broad decision in your forties to “never have a feeding tube” or “never put me in a nursing home.” Here’s an example of how a line might change:
Let’s say you’re a healthy 60-year-old man involved in a motor vehicle accident who now requires a feeding tube for a brief period until you’re able to eat normally again. And maybe you also had your hip replaced because it was broken in the accident. So, now you also need a short term rehab stay in a nursing home for therapy with your new hip. In this case, you might change your “nevers” to allow your family to insert the feeding tube for this (expectedly) brief time and you’re okay with a nursing home rehab stay. So, you move your line in the sand.
Advance 20 years and you’re now an 80-year-old man with Parkinson’s Disease and fast-advancing dementia. You live in your 2-story home with your wife of 50 years and she’s been your primary caregiver. You are dependent on your wife for all of your care but she’s frail herself now and unable to move/lift you as she once did. And now you can no longer safely swallow food or drink.
Where is your line in the sand now about a feeding tube or nursing home placement?
In order to obtain CEUs for this course, I was required to take an online exam. One of the exam statements addressed the impact of early advance care planning and conversations on grief (specific to dementia, but it is fitting for all scenarios). Early ACP is important because:
- The person with dementia [added by Cindy: end-stage heart failure, end-stage lung disease, cancer, aphasia, fill-in-the-blank disease] cannot participate.
- Families already burdened by caregiving may disagree about care options.
- Despite the nature of the disease, death may occur suddenly and without warning.
- All of the above.
I’ll let you decide the correct response.
People may believe this line-in-the-sand approach to conversations about healthcare options indicates that we should wait until we reach a certain age or health condition and THEN decide where to draw our line. Perhaps some believe that deciding at age 30, 40 or 50 what I want when I’m 70, 80, or 90 is impractical. Things change rapidly in today’s medical arena so maybe in another 20-30 years I won’t have to worry about a feeding tube or nursing home placement because they’ll be able to fix whatever is wrong with me and I’ll be good as new.
Except we know that the aging process changes our bodies in ways that are not always readily apparent and changes in health can be swift and unrelenting. We know that heredity gives us increased risk factors and predisposition to certain diseases that we are likely unable to change. We know that chronic illnesses (including cancers) take their toll eventually on all those who live with these diseases. We know that illnesses like ALS, Parkinson’s, and Dementia are progressive and irreversible. We know that every person alive will die.
Talking about how our health will change as we age and as diseases occur will not make either of them happen faster than nature occurs. Talking about the types of care we don’t want will not diminish the types of care we choose. Talking about dying and death will not hasten death’s approach at our doorstep.
Talking earlier however, WILL prepare you and the people around you (loved ones, caregivers, healthcare providers, employers, co-workers, etc.). It will prepare you to draw lines in the sand and then re-draw them as conditions/ideals/values change. It will prepare you to say and do things that are important to you now. It will give you the opportunity to help prepare those who will grieve your death. It will prepare those who survive you to embrace their grief as a natural part of life, wrapped in the knowledge that you loved them, you’ll miss them and that you expect them to go on with their lives (and that it’s okay to do so).
Caring Choices helps you draw that first broad line in the sand and then define or move the line as age increases and health declines. We can give you and your family tools to start the conversations to share decisions that will help survivors after you’re gone. Don’t deprive your loved ones of peace after your death. Draw a line in the sand now, knowing that you have the option to move it as often as needed. Talk. Now and often – until you can no longer do so.
© 2015 Caring Choices