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, LCSW, RN, is the Coordinator for the Brevard County, Florida Coalition For Advanced Illness Care. He has seven years of hospice social work. In addition, he is a trainer of nurses in the art of caring for people at the end-of-life.
LINKS
Health Care Planning
National Hospice
Florida Hospices
American Psycological Association - End-of-Life Issues and Care
Last Acts
Caregiving Market Place
Music and Grief
Community Caregiving
Grief Recovery
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A Continuing Series |
Health Care Planning
by
Charles Antoni, LCSW, RN
Tom is in his eighth decade, a former salesmen from Chicago, and a life long diabetic. In 1997 he was diagnosed with kidney failure and started kidney dialysis. He has gone for cleansing three times a week ever since.
His diabetes has claimed his eyesight along with his kidney’s. He has macular degeneration and in the last year has been unable to watch TV and particularly his beloved Bears. His life long passion for reading is significantly hampered and he is relegated to reading with a special magnifying device.
I have been seeing Tom once a month for 7 months. Our conversations have been about economics, politics, the war, sports and our families. He has two "very successful" daughters in the Chicago area. Today we visited and I had an agenda. The management of the upscale assisted living facility where he resides is concerned that Tom was exceeding the level of care the facility is licensed for.
Tom, Nancy his nurse and I began to discuss various scenarios and options. I have to almost shout because of his hearing loss. He’s a private guy and the idea of either going somewhere to be cared for or bringing in someone to stay for extended periods of time was distasteful to him. We were trying to work around his dialysis routine and other needs including the next days recovery period that follows every treatment.
Our plan was complicated by the fact Tom had recently run over his foot with his electric scooter that he uses to make any journey longer than a trip to bathroom, kitchen or bed. He was obviously distressed. I said to him Tom how do you feel about your dialysis. His reply, "it’s absolutely necessary without it I will die in a matter of days". I asked have you ever thought about stopping...he paused, "yes I have. Its gotten to be too much. I know I can’t beat this thing and all the hassle of getting ready to go, going, and being wiped out when I get home"... his voice trailed off. I asked do you realize you can stop when you get ready. He was silent a moment then responded "I woke up this morning thinking about that very thing. It’s like I am just holding off the inevitable...and for what?
We discussed his options should he choose to stop, what the prognosis would be, and how to involve his daughters. We promised we could keep him comfortable and would see him and the family through the process. He asked for some time to think about it "even though I think I know what my choice will be". We helped to arrange for him to have help with his bathing, dressing, and meal preparation for the weekend. "I will call the girls tonight and discuss my decision with them... Thank you so much for asking the questions.
What is the bottomline quality of life that is acceptable to you? Do you know? Isn’t it time we talk about it? The answer to this question establishes the benchmark from which treatment of your advanced illnesses or end-of-life care decisions can be made. Not knowing leaves you vulnerable to emotionalism or authoritarianism at a time when you need presence of mind and a rational process for thought, deliberation and decision.
I want to make it clear that I am talking to you as my own search for answers continues. I have been stting with those who are facing these choices; listening, exploring but without an answer of my own. Values, what is it that I value most? Who and what would I draw near to me?
If I were given a choice to surrender thought, word, sight, or sound which would I choose. Today is my last day on earth. What would I wish to say and to whom? If I were to ask would you have an answer at the ready? In a society that places a high value on vibrancy, vitality, and productivity is anything less than full participation acceptable?
What vision do you have for your last decades on earth? If faced with a life limiting illness at any age what are your expectations of yourself, spouse, partner, family, inner circle of friends; those who may be asked to care for you
Men are hunter-gatherers, providers, warriors, defenders, stoics; the quiet barrers of pain. We often do not view compromise, limitation or surrender as a vision of comfort or peace. In the scenarios that men find themselves in with either advanced illness or at the end of their lives; reluctance or acceptance can be pivotal to the quality of the outcomes.
To some the answer will be can I golf, hunt or fish? To others play my instrument or sing. To still others will I be able to enjoy the company of loved ones and friends. Doctor, will I have the will and energy to participate at some level? Will I be able to pray and meditate?
When we are faced with a life limiting illness knowing were we stand allows us to ask a very important question. Doctor, is what your offering me going to allow me to have this important bottomline with dignity and grace? If the answer is yes; then full speed ahead please. If the answer is maybe; lets try it and see; knowing I can stop at any time. If the answer is a probably not; then maybe I should let nature have its way. I can fill my time in preparation for the great unknown.
I wish to be comfortable, cared for, loved and treated with respect until death do us part...What about you?
Copyright 2003 Charles Antoni, all rights reserved
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