Severe Dementia — guide for the power of attorney

Severe dementia comes to an end.  And, as the end approaches the POA (the person designated as the health care “power of attorney”) must face some difficult questions.   Be assured, such questions are not new.  Ethicists and philosophers provide some guidance:

1. Understand death is near.
2. Be conservative — try not to interfere with a natural death
3. Comfort should be the goal.
4. Avoid tests, treatments or procedures unrelated to comfort.
5. Approaching death creates emotion.  But, strive for logical decisions.
6. Discuss the above 5 principles with health care providers and family.
7. Keep in close contact with family members.

When is dementia severe?  First, it is not something that happens suddenly.  There is a progression from mild, to moderate to severe that develops over months to years.  Finally, the person looses connection to reality and does not remember who they are, where they are or what time it is.   Physically, they they loose coordination, slow down, get weak, don’t talk clearly, frighten easily, anger easily, choke easily, fall easily, and often loose control of bladder and bowels.   Eventually, they need help even with the simple activities of daily living:  like dressing, going to the bathroom, bathing, feeding themselves and even sleeping at the right time.

What naturally happens?  In a modern care setting the most common final events are pneumonia (from poor swallowing), urine infections, strokes,  infected bed sores, blood clots, and falls with head injury or broken bones (like a hip fracture).  Often, a demented patient will have one hospitalization after another.  The person never seems to fully recover.  Any changes in environment, like a new room or new caregivers can drastically worsen the mental situation.  Mental stability is aggravated by restraints or sedatives.  In the end, the person may become unresponsive (a coma) and bodily functions stop.

Who can help the POA?  Decisions by every POA will vary according to the situation and patient wishes.  Hopefully, the POA had a discussion with the patient about end-of-life issues before severe dementia intervened.  Most POAs will still ask themselves if they are doing the right thing.  A discussion of medical facts with the primary care provider helps to put priorities in order.   Social workers can be a world of help.  Clergy often has a big-picture view that is very comforting.  Palliative care programs (if available) can be a relief with a team of doctors, nurses and social workers to give support over long periods of time.  When the patient only has a few weeks to live (according to the attending physician) then a hospice program can help in the final weeks at home or in a nursing home.

Even the best prepared POA runs into difficult questions:

• At the care center the patient’s hearing aid is lost — should it be replaced?  Answer:  probably not.  It will likely just be lost again.
• The gastroenterologist office calls to set up a routine colonoscopy, when should it be done?  Answer:  skip the procedure.  It will not make the demented patient live longer and the required sedation may be so disturbing it could cause hospitalization.
• The patient has no dental pain but the dentist suggests a new crown for a tooth.  When to schedule?  Answer:  no pain, no procedure.  Any procedure can result in hospitalization for minor complications.  If dental pain becomes a problem sometimes a quick dental extraction is the easy answer.
• The patient becomes unresponsive (in a coma) at the care center.  Should an ambulance be called?  Answer:  probably not.  If a do-not-resuscitate order is in the chart and the patient is in no distress good nursing care is all that is needed.