[socialjustice_fsu]

hospice licensed clinical social worker for about 8 years. I have been witness to so many aspects of the death and dying process that sometimes when I reflect back on what I do for a living it all can simply overwhelm me from time to time. I have walked the floors of a state of the art hospital and witnessed people in sheer agony due to the depth of their pain and despair. Some physician's want to have the patient hold on for a myriad of reasons. Some families cannot let go...perhaps guilt, unfinished business, or simply thinking they cannot live without their loved one regardless of their status? I have walked into homes of a new hospice patient that has received a terminal diagnosis - with maybe only weeks to days to live. They have begged myself and my hospice nurse to 'take them out.' Many have a plan. Many simply need someone to say "I would want what you want, too." I have watched our hospice be summoned (often reluctantly be the attending physician) and sometimes in just hours we can get the pain under control and the patient to a peaceful space. This allows for families, friends, lovers, partners to say what they need to say...I love you, I forgive you, Will you forgive me? Thank you, Goodbye. If a patient is in horrific pain they often cannot fathom what is happening to them much less 'participate' in their own death.

Taking this from another angle...my work has brought me up close and personal with folks that are SUFFERING with end stage Alzheimer's disease. If you don't know much about this...please...find a local unit and take a walk through. You will never, ever be the same. Watching these folks go from prominent, productive souls to eating their own feces, crawling on the floors, screaming for no apparent reason we as practitioner's can see, not eating properly and an overall danger to themselves and their loved one's will bring you to your knees at night asking "Why must they suffer so?" The answers allude us all at hospice. We provide loving support, therapeutic touch, gentle redirection and lamely attempt to help them maintain an iota of their dignity. I ask you...if you had a choice would you want to finish your years such as this? Would one choose suffering? Let me throw in the caveat...the unit/facility that I contract with for Alzheimer's disease is an upper end facility...actually top of the line in the Southeast...a one month stay costs about $5800.00. Medicaid does not pay anything. Medicare does not pay room and board under any circumstances at an Assisted Living Facility. How do families even begin to pay for such living arrangements? Most of us in our 40's, 50's and 60's may have a meager 401K but most corporate pensions are unheard of. So not only does one have to consider the agony of their loved one's condition, the utter despair and helplessness of the family...but the outragous cost of health care for folks with this ruthless disease.

Okay, back to the thread...people must have the right to make well-informed decisions about their bodies. Yes, I believe being of sound mind when making such decisions are essential. Yes, right now two of my patient's both with advanced kidney cancer that has spread to the thoracic region, the spine, and both femurs have shared with me their 'plan' they have with a trusted, loved one to end this nigthmare. To me, these are my heroes. I believe them to be visionaries in their own right. Can I help them with this plan? No, it is illegal for me to do so. Can I support them? Of course. Can they call me when their time is 'near' for validation and unconditonal acceptance for this mercy they have grown. Of course. Death is an intimate but mighty journey for anyone to experience. Let people CHOOSE their way. If they choose no treatment. Love them for it. Hold them as they face days in which they are getting close to end of life...be it by their own hand and assisted by someone who understands the depth of facing death. Death need not be frightening...but welcomed as a refuge of peace.

Make your needs known. Now. Have 'that talk.' There is now a document available that is good in 40 states. It is called "Five Wishes." This is what it covers in detail: The person I want to make care decisions for me when I can't; the kind of medical treament I want or don't want; how comfortable I want to be; how I want people to treat me; and what I want my loved ones to know. This is printed and made available through a grant from Aging with Dignity (Robert Johnson Foundation) and printed here in Florida. I have access to many copies of this legal document. I invite you to PM me if you want to have use this document. My hospice has agreed to pay the postage.

So...is 'Jack' on the right track with his actions? Although his views are often seen as radical because of the WAY plans are carried out makes it hard to completely digest in it's entirety. Of course, many trailblazers are viewed as 'off the chain' and 'beyond all reason.' He is making us think. Making us talk. This is how change comes into our lives. We work so hard on living well isn't it time we start dying well, too?