Hi everybody:
I should warn you up front that this post has nothing to do with narcissism, and some of you may wonder why I wrote it. I put it here because I've come to believe that this is a place where we can share all of our tough dilemmas, and I value the counsel I've received here.
I received a phone call from one of my mother's doctors this afternoon. He finally put into words what I've been suspecting. She does not have long to live. Despite aggressive antibiotic therapy, she is losing ground. Her mental status has deteriorated every day this week, and she now has aspiration pneumonia. She is aspirating either her own secretions or her tube feedings (it's impossible to tell which). This problem will be permanent unless her mental status improved significantly, and that is almost impossible.
She will not be allowed to remain in the hospital until the end. We therefore have two choices: either return her to the nursing home, which we loathe but which will allow continued IV antibiotics, or put her in the inpatient hospice unit. The latter is requiring that we discontinue the IV and reduce the tube feeding by 50 percent.
At this point, it has become primarily a moral issue. My mother is a fairly devout Catholic, and she would not want anything done that is contrary to the Church's policy. She and I actually talked about this a few times while Pope John Paul was dying. (She had great admiration for him, and as a person of Polish descent, great love for him.) I have read the relevant Church documents several times, and I actually went to see a priest yesterday to seek advice.
Neither the documents nor the priest offered clear direction. The pastoral letter on care of the sick and dying stated that there is no moral obligation to maintain a "precarious and burdensome" state of life, but that the presumption should always be in favor of "normal care" and "preserving life." Similarly, while the presumption should always be in favor of nutrition and hydration, there is no moral imperative to provide either when they become burdensome to the patient and death is imminent. If the continued provision of tube feeding causes my mother pain (through aspiration pneumonia) and does not prolong her life (she will die of infection anyway), then I suppose there is no moral obligation to continue it. I have also read that it is unlikely that she will experience pain associated with the absence of nutrition and hydration; any symptoms can be alleviated through normal care, such as swabbing her mouth or wetting her lips. I also read a study that said there is no evidence that tube feeding actually prolongs life or function in severely demented patients, and I believe my mother is entering that category (through brain damage, or cessation of brain function).
I want her to have the superior care of the hospice unit--more attentive, more personal, more focused on maintaining comfort and relieving pain. I really can't bear the thought of her lying in the nursing home, soiled and stiff and ignored, for hours on end. For the most part, the nursing home staff do what they can, and some of them have been remarkably attentive. But the care of the living will always take precedence over the care of the dying, except in an environment dedicated to the latter.
I've also asked myself over and over whether I would discontinue the IV antibiotics because I want this to be over sooner. I think that if there is no hope of recovery--even temporary recovery--then there is no point in continuing a treatment that might suspend my mother in half-consciousness and thereby prolong her suffering. I lie awake at night wondering if she can breathe. I know she could not tell anyone if she couldn't. I can't bear the thought of her choking to death because she is too weak and too confused to push a call button, or worse--because no one answers it. It's pretty clear that even with continued antibiotics, the combined infections (some of which are antibiotic-resistant) and pneumonia will overwhelm her, just more slowly.
I'm going up tomorrow morning to meet with the hospice social worker. I believe all four of us will be there, and while I care very much about how my sisters and brother feel--and how they will be able to deal with the consequences of any decision we make--I know that, ultimately, my mother entrusted this decision to me. Only I can sign the papers. And I think one reason she did that is because she knew I would take the trouble to balance the moral with the medical, that I would put more emphasis on what is right than what is expedient. And she would want what is right to be done.
In the end, the priest said that he could see the argument for discontinuing the antibiotics, but not the nutrition/hydration. I think he's probably right, and given the new development of aspiration pneumonia (which I only learned about after I had already spoken with him), I think it's probably right to reduce the quantity of feeding because it would reduce the likelihood of aspiration of her stomach contents. My mother won't die of lack of food or water, and attentive care will keep her comfortable. But it is very hard. Very hard.
If you pray, please pray that I will have both the wisdom to know what to do and the strength to do it. And pray that my mother will soon find peace, that she will breathe clearly and deeply and know that she is surrounded by love.
best,
daylily
