Six years earlier, the topic in my ethics graduate class was end of life. Our professor showed three different movie clips, and we discussed the various scenarios:
- A young person in a coma, clinging to life via a feeding tube and ventilator: should the family keep her “life” going just in case she came back one day? What about the cost of the treatment, likely being shared by tax-payers?
- An elderly woman facing the inevitable end: should she be given feeding tubes, hydration, other medications? Who should decide?
- A young man paralyzed by an accident wanted to die. He had no control over his body, would it be right to withhold treatment so he would eventually die?
After four hours of discussing the pros and cons of these scenarios, the professor asked if we should continue discussing end-of-life in the next class. 20 pairs of eyes looked at him, horrified, 20 heads shook “no”. We had enough of THAT depressing subject. He concurred.
I didn’t realize this was God’s way of preparing me for very hard decisions.
We had the proper paperwork in place to allow us to make end of life decisions for Dad. But end of life decisions are not so simple as “Do we pull the plug or keep him/her going?” We progressively had to make decisions such as:
- Do we treat skin injuries? Of course.
- Should we continue his anti-depressant? His blood pressure pills? Thyroid meds? We eventually weaned him off most medications.
- Should they give him antibiotics?
- We decided they should only give him antibiotics for comfort care, such as for eye or bladder infections (quite common in the elderly.) We would withhold antibiotics for any sign of pneumonia (also very common, especially when the elderly aspirate).
- Would he be resuscitated with CPR? Intubation? Absolutely not, he was “DNR” (do not resuscitate).
- Often towards the end of life dementia patients aspirate their food. If he couldn’t eat, do they put in a feeding tube?
- We decided no. There was an elderly woman in my dad’s unit who couldn’t talk, couldn’t walk, and was clearly near end of life. Her family had a feeding tube inserted in her stomach. I wondered why. In spite of the feeding tube, she died before my Dad.
- Do we hydrate via an IV?
- That one was tough. Is hydration comfort care or life-extending? I agonized this question with the head nurse. She gently explained in his situation hydration would be life-extending. Did we want his life extended? Do we want him to be uncomfortable and thirsty? Ask me later.
- On and on it went.
Stop. Just Stop!
My head was screaming, “STOP ASKING ME ALL THESE QUESTIONS!”
My heart was aching. Lewy was growing, taking over our lives. When I wasn’t at the nursing home I was waiting for the next call, the next report, the next set of questions.
Lewy lived in my dad’s body, and in my head.