My mother died last year at the age of 95, after a decades long descent into terminal dementia. I was her only nearby relative, although I was constantly in touch with my brother who was overseas with the State Department. He basically turned over the decision-making to me, the person on the spot.
Mom's last 2 weeks of life smacked me in the face with something I only read about in the papers, the great debate over the End of Life and health care rationing. Mom's health began to falter sharply, and she shuttled back and forth from the nursing home to the affiliated hospital. As the named person on her health Care Proxy, I was the one who had to make the calls.
A tough young social worker from the nursing home pulled me aside and said: "Schmuck, it's time you faced something - your Mom is dying. Are you planning to prevent that?" Only a friend can talk to a friend like that, and we had indeed become friends over a couple of days. She convinced me that a Final Care Committee (I think that was the name of it) be convened. The committee consisted of the hospital administrator, the head of nursing, Mom's attending physician, and my tough little social worker friend. There was even a person on the committee called an ombudsman, the guy in charge of serving as the advocate for my mother, the patient.
The discussion at the meeting had one goal: to assist me to decide the course of treatment for Mom; palliative care or regular care. Never once in the meeting did I feel pressure to make a decision one way or the other, but the right choice became clear: Mom should be made to feel as comfortable as possible, be given palliative care, and let nature take its course.
My comfort in having come to a decision didn't last long. When I visited her after the meeting the first thing I noticed was that she was off telemetry, that scary video monitor that shows pulse, respiration, etc. I raced to the nursing station to point out this glaring error. Trained to deal with strung out next-of-kin, the nurse explained to me, with the kindest diplomacy I ever encountered, that telemetry was irrelevant, because I had decided to "let Mom die."
Let Mom die. The very phrase filled me with coldness, because I suddenly had a power I never wanted, a power over life and death of my own mother. I could have been a completely self-serving idiot - and believe me, the thought occurred to me - and opted for regular care, meaning that heroic efforts would have been made to keep Mom alive. But the good folks at the hospital, as well as my wife and brother, helped me to make what I now know was the right decision: let Mom die.
My wife was faced with a similar set of circumstances with the lingering death of her 89 year-old mother 3 years ago. Lynda was an only child, so hers was a lonely perch indeed.
My decision had nothing to do with economics. Mom was on Medicare and Medicaid, so any financial thoughts would have been academic. Believe me, when your Mom is dying, you do not think about the economic impact of end-of-life care on the economy as a whole. But we should think about it, especially as baby boomers like myself continue to gray and fall prey to a rainbow of ailments. A statistic that never seems to change is that 30% of all Medicare dollars is spent in the last year of life. Medical technology now enables us to add months of life for a person stricken with any number of maladies, including cancer. Months.
The idea of government imposed health rationing, death panels in the heated rhetoric of the debate, disturbs me. But this article is not intended to engage the great debate, not here anyway. My purpose is to talk to you, who is probably reading this because the issues I'm talking about confront you now. No, I'm not looking to educate you - a term we hear often - I'm looking to reach out my hand to you, and share with you my trying experience, and let you know that you're not alone. Your loved one is just that; so make your decision with love, and you can't go wrong. Sometimes the best thing to do is to let Mom die.
No comments:
Post a Comment