Eating/Drinking Nutrition/Hydration in Late and End Stage Dementia Difficult choices Difficult Process diannadrascic@gmail.com
Interactive workshop Literature, research, data do not equal people
3 points to consider: What is the Need to Feed and where does it come from? Do we love with food? When people are in late and end stage of lifeending illnesses do they starve to death?
You will die. How do you want to die? When do you want to die? Do you have an up to date Advance Directive? Do you have an up to date Will? Have you discussed same with your family (those whom will be asked to make decisions on your behalf if you are unable to speak on your own behalf)
List 5 things you have to do before you die List 5 things you want to do before you die (your bucket list)
If it s hard to do and think about these things when it isn t real: How much harder is it to do it when it is real? Talk Turkey
When can the person living with dementia do any of these things? Is there such a thing as a good death? What does it look like? Almost everyone wants a good death
When do you need to start End of Life Preparations with Dementia? Most families and patients do not recognize that dementia is a terminal condition because: No one tells them
Most families do not understand the process of dementia Most patients and families do not understand that dementia is a terminal condition Difficulty with swallowing and choking are part of the progression of dementia and indicative of late and end-stage illness (in most people)
Emotion before Logic It is exceedingly difficult for anyone to make good decisions in a time of crisis Asking a family to come to agreement re: plan of care is very difficult if they have not discussed end of life care planning in the past
If you don t eat all day how do you feel? Do people in late and end stage illness feel hunger the way that you do? The body (in late and end stage of illness) prepares to die over a period of time, sometimes hours, days, weeks and sometimes years
What, when, why do you eat? Physical eating Social eating Psychological eating Spiritual eating
How do you feel when someone you care about turns from food and drink? How do you feel watching someone you care about choke?
When our loved ones turn from food and drink we feel that (emotion before logic): Our loved one is: Rejecting life/survival Rejecting our love Rejecting our need to offer comfort, support and life
Is this perception accurate? (logic) No Taking in less and less food and drink, often over the course of days, weeks, months or years is how our bodies prepare for death from illness/frailty Pre-active and active phase of dying
Choking is a natural part of the progression of dementia Choking/aspiration is the most difficult symptom of late and end stage dementia Watching someone choke is very, very hard We have to do something! Professionals come from logic; families come from feelings
If we know choking is a part of the journey toward death for most people with dementia: why aren t we prepared? why aren t we supporting each other and our loved ones?
Families will listen to the ER intern
Do people with dementia and other life threatening illnesses starve to death?
Do our HCPs know everything they need to know? CCAC RN MD told a family and wrote on the death certificate (dementia), he starved to death
Do feeding tubes or hydration offer benefits in late-stage/end-stage illness?
What benefits do we expect to see when we insert a feeding tube? Temporary or permanent replacement of oral nutritional intake resulting in: Increased energy, alertness, participation in ADLs Wound healing Potential to develop muscle mass Prolongation of living or dying
What happens when we insert a feeding tube in late/end stage dementia? Six trips to Mars (aphasia, agnosia, apraxia, executive functioning) Restraints ( X 24 hrs = almost no further independent mobility) Aspiration still occurs with feeding tube Site infection (tube, lungs, kidneys) Insertion of a urinary catheter = infection None of the anticipated benefits are achieved
Hydration via IV or Hypodermoclysis No consist research is able to confirm that hydration is of benefit in late and end stage disease/illness
Eating and Drinking at late stage and end of life: Our obligations: Offer frequent, tiny/small amounts of food safely and with consent KNOWING that there is always a risk of choking/aspiration (review with all staff and family/decision makers at least twice) Excellent mouth care q 1-2 h (CNA & RNAO guidelines) Sips/ice chips until no longer conscious followed by mouth care (as above)
Summary Choking is a normal part of dementia We all need to maximize feeding efforts We need to talk about feeding tubes and hydration at the beginning (diagnosis, admission) Offering food and drink is not prolonging dying. It s offering comfort. Mouth care with soft, rounded brushes at end of life is not prolonging dying, it s offering comfort.