My mother and mother-in-law, each with moderate stage dementia, had palliative care that helped them and their loved ones find peace in the last few days of their lives about 15 years ago, with the use of a form called MOLST (Medical Orders for Life-Sustaining Treatment) in New York State. (In other states this is call a POLST (Physician...)circular wrote: ↑Wed May 24, 2023 9:13 am...I don't have experience in late stage Alzheimer's care and whether a patient whose having swallowing issues can still ask for food and water.
...Alternative Options to Hasten Death... If having the option of palliative sedation is important to you, discuss it with your hospice or other medical provider well before it becomes necessary.
As health care proxy, I had a long conversation with the palliative care doctor about my mother's severe hear failure (which I was aware of) and her prognosis upon admission to the ER with severe symptoms the night before. He then had an even longer conversation with one of my sisters, who was convinced that my mother's pulse rate of 100 was "perfect" and that she would "wake up." Instead of contradicting her, he gently explained that if she did wake up, she could be moved to a rehab facility, but in the meantime it would be kind to NOT have monitors beeping and blood tests being run daily, as happened in the nursing home. Palliative care doctors support the patient and are VERY skillful in talking with people about their hopes, fears and values.
My mother had repeated morphine to reduce the discomfort of "active dying" from respiratory and heart failure, yet was able to sit up and smile broadly (with eyes closed and no speech) for more than 30 minutes on evening while we shared how much she meant to us. She died without regaining consciousness 3 days later. My MIL similarly had palliative care at a specialized center of a nursing home, where she died peacefully with no need to resort to feeding tubes for someone who showed no responsiveness after a sudden (probably vascular) change in status.
MOLST is not what most of us might prefer: to choose the time and manner of our death, especially with dementia, as Medical-Aid-In-Dying (MAID) laws provide for in the US. VSED, which some with moderate dementia could still choose, requires planned hospice support for significant levels of pain.
I'd encourage anyone with a parent or loved one with a diagnosis of dementia to have the conversation on values and preferences early, and as the disease progresses to talk with care providers about use of a MOLST/POLST.
https://www.health.ny.gov/professionals ... hts/molst/MOLST is intended for patients with serious health conditions who:
- Want to avoid or receive any or all life-sustaining treatment;
- Reside in a long-term care facility or require long-term care services; and/or
Completion of the MOLST begins with a conversation or a series of conversations between the patient, the patient's health care agent or surrogate, and a qualified, trained health care professional that defines the patient's goals for care, reviews possible treatment options on the entire MOLST form, and ensures shared, informed medical decision-making. ...[A] licensed physician, nurse practitioner, or physician assistant must always, at a minimum: (i) confer with the patient and/or the patient's health care agent or surrogate about the patient's diagnosis, prognosis, goals for care, treatment preferences, and consent by the appropriate decision-maker, and (ii) sign the orders derived from that discussion.
- Might die within the next year.
...MOLST form is the only authorized form in New York State for documenting both nonhospital DNR and DNI orders