Progressive dementia: addendum to advance directive

This document is intended as an addendum to one’s advanced directive. It will be repetitive to some extent in terms of an existing directive, but there is some unique material and it adds detail to some issues, e.g., what medications to continue and what medications to discontinue. It can easily be modified to include person-specific wants such as being given alcohol or cannabis (when and how much) throughout the illness.

In a complex healthcare system, with so many players involved, it’s easy for treatment (especially emergency or from an unfamiliar provider) to spiral out of control with tests leading to decisions and treatments and subsequent tests and more treatments, and so on. The core idea is to maintain control over one’s life and death – because someone will control the arc of our illness, and for most of us, it’s better to control (as much as is possible) our own destiny.

Happy Trails to us all!

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There are several things I fear, among them dementia, CVA, and neuromuscular diseases such as ALS. None of these seem imminent, but one never knows!

If I am diagnosed with dementia not explained by delirium or major psychiatric disorder, my Advance Directives and/or Living Will will reflect the following:

Mild dementia

If I am mildly demented as discussed/defined below, I want my agent (—-) to establish a DNR status for me.

Mild dementia discussion/definition: objective evidence of low performance in more than one cognitive domain that is greater than expected for my age and educational background; significant interference with the ability to function at work or at usual activities, but still able to carry out basic activities of daily living (bathing, dressing, personal hygiene) and participate in some pastimes, chores, and social functions; evidence of significant difficulties in daily life that interfere with independence (Knopman and Petersen, 2014).

Note that mild dementia is not the same as mild cognitive impairment.

Moderate dementia

If I am moderately demented as discussed/defined below, I want my agent to discontinue routine medications EXCEPT medications improving comfort and quality of life. Currently, medications to continue if I am moderately demented include —-. Medications such as cholinesterase inhibitors may be given to improve confusion, communication, or memory. Currently, medications to discontinue would include —-.

If I am moderately demented I want my agent to discontinue routine doctor or NP visits, antibiotics for infections, and all life-prolonging interventions.

As a general rule in this and other end-of-life health matters, if I am experiencing agitation or increased anxiety, I would rather be sedated and not distressed than alert and distressed. Cannabis should be given for a good trial for agitation or increased anxiety before using pharmaceutical medications.

Unless I explicitly request any changes, I want to be given cannabis daily according to a schedule that I will give. Vape or pipe is by far the preferred route. If smoking is not possible, cannabis should be given via oral/edible route.

Moderate dementia discussion/definition: objective evidence of difficulty concentrating; decreased memory of recent events; increased difficulty managing finances or traveling alone to new locations; increased difficulty completing complex tasks; withdrawal from friends or family because of difficult socialization; require assistance in bathing, toileting, or dressing (Dementia Care Central, 2018).

Severe dementia

At the first signs of severe dementia as discussed/defined below, I want to be admitted to a hospice or palliative care program at the earliest opportunity. I want a plate of food to be placed in front of me at mealtimes, but manual or parenteral feeding should be discontinued unless I explicitly request it. No intravenous fluids are to be given. I want to be allowed a natural decline and death (Kemp, 1995).

IF I am able to swallow, medications should be continued as discussed under moderate dementia.

Agitation or increased anxiety should receive ongoing medical attention. I would rather be sedated and not distressed than alert and distressed.

I want to be given cannabis daily according to the schedule I will give. Vape or pipe is the preferred route, though oral may be necessary.

Severe dementia discussion/definition: incontinent of stool in the absence of GI infection, unable to walk alone in the absence of injury or disease unrelated to dementia, have speech limited to a few words/day, experience delusions and/or hallucinations, unable to recognize my immediate family.

Thank you and blessings upon all who help me on my journey.

References

Dementia Care Central (2018). Global deterioration scale. Online. https://www.dementiacarecentral.com/aboutdementia/facts/stages/

Harrington, S. (2018). At Peace. Grand Central.

Kemp, C.E. (1995). Terminal illness: a guide to nursing care (2nd ed.). Lippincott.

Knopman, D.S. and Petersen, R.C. (2014). Mild cognitive impairment and mild dementia: a clinical perspective. Mayo Clinic Proceedings, 89(10), 1452-1459.

 

4 Comments

  1. Leslie Murphey

    This is excellent, far better than my half-formed plans of ending my life at the precise moment when self-awareness ends, and avoiding the long painful burden to my family. I believe I will copy this, if you don’t mind. I also hope neither of us ever has to implement this.

  2. Carolyn Davis

    This is very comprehensive as I read it, and better than I can explain to my son, who has all my “powers of…” He doesn’t like to discuss it, so I’d like to copy and send it to him. I’ve already told him that doctors do not have to abide by a DNR, though they are supposed to. I told him that if I’m unable to make the decision, do not let a doctor talk him out of it. Pull plug!!

  3. Lynn Guy

    I agree with your directive completely. I am not certain that the cannabis option is possible in my state (TX). I definitely do not want extreme measures if I have lost the capacity of awareness and cognition. This is difficult in light of the medical community’s tendency to oppose these choices based on my expression of these wishes in conversation.

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