Tag: American Cancer Society Hope Lodge

Of all my many preparations for surgery–including signing up for Premium Spotify [worth it]–creating a valid Living Will exercised far too much time.

I can and may list the valid rationale for having a Living Will, which here in Pennsylvania is called officially a Durable Power of Attorney.

Durable means (as lovers of the English language are encouraged to deplore) limited.

The person selected to execute my living will can only take care of my health care decisions–decisions I have listed in advance (see below) and which She, as it turns out, may only make following my explicit instructions (see below) and is not allowed to vary from my instructions at all.

My agent does not have authority to act for me for any other purpose unrelated to my health care. All of my agent’s actions under this power during any period when I am unable to make or communicate health care decisions have the same effect on my heirs, devisees and personal representatives as if I were competent and acting for myself.

To tell the truth, I would much rather watch a Shania Twain video than go through the gut-wrenching process of picking the person who will turn off the plug if I emerge from surgery a rutabaga.

Here is the video I would rather see than execute a Living Will.

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The problem with going into surgery which I knew would be successful (and indeed the surgery was successful) was encountering flak from a variety of sources.

One of these sources was my elder daughter  Joanna, who has two honor degrees in nursing and is convinced–perhaps rightly so–that she knows everything.

Joanna insisted that she be the one to pull the plug.

In April I had had the foresight to executed a previous Living Will at my hospital bed, but once out of bed and back and forth to New York for reasons I will not explain (or may) I had to change the document.

For one thing, the April Living Will made the assumption that it was unfair to ask my daughters to perform such a task; my friends would spare them the guilt of pulling the plug. This assumption was wrong and in a way I cannot quite describe demeaning to them.

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In preparing for August surgery at Memorial Sloan-Kettering with the Living Will, I thought I was just going through the motions.

Then. Joanna said, “[Expletive deleted] I am a nurse. If anyone should pull the plug it should be me. Anyway, I would not be pulling the plug. I would be telling someone else to pull the plug.”

Meanwhile, my friend Pinhas had complained that in April he had been made second in line to pull the plug and wanted to be first; plus, my April number one batter up was afraid she did not have the medical knowledge.

Finally, Memorial Sloan-Kettering Cancer Center required (actually requested–it is optional) an updated Living Will plus other relevant documentation I will bother you with.

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My wishes. Clearly, some of my wishes did not matter at all. Others did, but not now–meaning not before August 8th and my kidney operation.

The primary reason I was filling out a Living Will was because I wanted to please the Administrators at the hospital where I was about to have surgery. If they saw that I was a responsible enough citizen to fill out the expletive deleted form, they would decide I was a right guy, guaranteeing some slack later when I behaved poorly–as I did.

I really and truly did not want anyone to take the document seriously. It was one of a list of items on my clipboard, the least important, and one that took up attention from more important things (which I will list for you eventually, but can be summed up with this video from Bessie Smith) :

Here is a salient excerpt from the Pennsylvania Living Will form, which is a lot simpler to fill out than you might expect:

I direct that my health care providers and others involved in my care provide, withhold, or withdraw treatment in accordance with my directions below:

1. If I have an incurable and irreversible (terminal) condition that will result in my death within a relatively short time, I direct that:
   • I be removed from any artificial life support or any additional life-prolonging treatment. ______ my initials
   • I not be artificially administered food and water, realizing this may hasten my death. ______ my initials
   • I not be provided any comfort, care and relief from pain, including any pain reduction medication, if the effect would be to prolong my life. ______ my initials 

2. If I am diagnosed as being in an irreversible coma and, to a reasonable degree of medical certainty, I will not regain consciousness, I direct that:
   • I be removed from any artificial life support or any additional life-prolonging treatment. ______ my initials
   • I not be artificially administered food and water, realizing this may hasten my death. ______ my initials
   • I not be provided any comfort, care and relief from pain , including any pain reduction medication, if the effect would be to prolong my life. ______ my initials 

3. If I am diagnosed as being in a persistent vegetative state and, to a reasonable degree of medical certainty, I will not regain consciousness, I direct that:
   • I be removed from any artificial life support or any additional life-prolonging treatment. ______ my initials
   • I not be artificially administered food and water, realizing this may hasten my death. ______ my initials
   • I not be provided any comfort, care and relief from pain, including any pain reduction medication, if the effect would be to prolong my life. ______ my initials 

Regarding item 1, I answered: “I be removed from any artificial life support or any additional life-prolonging treatment“

Item 2, I answered: “I not be artificially administered food and water, realizing this may hasten my death.”

Item 3. I answered: “I be removed from any artificial life support or any additional life-prolonging treatment.”

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Time for another video:

http://youtu.be/SoJkxNa6v14

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The PA Living Will form states what I told the form I wanted. Period. See:

“My agent’s powers include, but are not limited to:

“Full power to consent, refuse consent, or withdraw consent to all medical, surgical, hospital and related health care treatments and procedures on my behalf, according to my wishes as stated in this document…”

Other language makes clear: My Agent has no choice but to pull the plug because that is my wish as stated in this document.

The fact that none of my would be agents realized that they had no power at all to effect my major decisions was of no concern to them. What was of concern to them was my welfare. They love me. They want what is best for me. Instead, I had to spend time explaining this expletive deleted stuff to them and the more I explained the more frightened  they became until, naturally, a discussion began about my funeral. [I do not want a funeral; I want a Democrat elected governor of Pennsylvania next year.]

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Perhaps a photograph unrelated to anything might prove useful here:

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Naturally, the situation became complicated. Naturally, for me. Naturally, for the situation.

I was preparing for an operation in New York on August 8th. Why was I worrying about a durable power of attorney in Pennsylvania when the operation was happening in New York AND Memorial Sloan Kettering requested I provide a valid New York State form?

Not the same form, of course. That would be too easy. The New York State form is entitled, “A Health Care Proxy.” The proxy delegates someone to be my health care agent: “In the event I have been been determined to be incapable of providing informed consent for medical treatment and surgical diagnostic procedures.”

Enter a useful attorney whom we will call Hadley V. Baxendale, a moniker he likes. Hadley had three recommendations:

1. Since I live in Pennsylvania and have been hospitalized several times in this Commonwealth, a valid PA Living Will is a good idea.

2. The New York form is limited in stating explicitly the powers an agent can have. Link the two documents for New York so the New York agent is required to follow the more detailed directives in the PA form–having the two notarized together which I did at the American Cancer Society’s Hope Lodge where I temporarily stayed before and after the surgery. I handed that two-in one document in on Surgery Day to someone entirely covered in white who said, “Thank you. I will put it in your folder.”

3. Hadley said, “There is room in the PA form for additional instructions. Let me begin by asking you the following questions.” I minded answering each question. The Aristotelian/Talmudic logic behind legal–especially good legal–thinking drives me crazy. So, I had to answer how much of a vegetable I was willing to be before I was willing to have someone pull the plug. What percentage of postoperative disability I was willing to take. And other tranquil questions designed to put me in the mood for surgery.

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Time for another song.

http://youtu.be/QwIYrx6Bqe0

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The upshot was that because they were actually present and available my younger daughter Amelia and my sister Sarah Schmerler were designated NY Health Care Agents for me.

Amelia first. Sarah if Amelia were unavailable.

Both spent my operation time weeping at the old Whitney Museum just before Renzo Piano creates his magic and builds a New Piano Whitney. I have seen a photograph of the two together waiting in front of a sign explaining Piano’s future vision, but can not find the photo. Alas.

This is unfortunate because I could then explain that while each were waiting with their iPhone ringers on in case a major medical decision was required in their capacity as my Agents, Dr. Russo figured out how to close the wound all by himself.

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One more song and then a conclusion (I hope). Brief (I hope).

http://youtu.be/uOQwdRMTKEk

 Certainly, having a Living Will is an excellent idea. It is not an excellent idea when you are going into the hospital and have an excellent chance of survival. Then, having intense discussions about your wishes if you are incapacitated beyond redemption takes on an unfortunate side trip past where you want to be and what you want to talk about with your loved ones.

Here is a photo of my sister Sarah getting in shape to be my alternate Health Proxy. Did the enormous time involved in, for example, notarizing the Pennsylvania document in PA and two days later notarizing the New York document (with notarized PA) document attached and also notarized–gathering two witnesses each time. My appreciation to my Rep. in the Pennsylvania House Scott Conklin for making his office available for that purpose. [The Democrats could win the governorship with the right team. Conklin ran for lieutenant governor in the last election and lost. I hoping that he will run as a running mate with Allyson Schwartz and win.] {Whoops. I got off subject.}

A non-partisan thanks to Lorrainne Katt, Manager of the American Cancer Society’s Hope Lodge where I lived with Amelia, my daughter, as my caregiver. Lorraine in short order assembled a notary, another witness and signed the document herself.

This is Amelia several months ago drinking happily in Spain.

Amelia arrived in New York on Monday evening in time for the rules instruction at Hope Lodge where she took up residence as my health care provider that evening. The next day we…The following day, a meeting with Dr. Paul Russo, my surgeon, a wonderful physical therapist, and an intense examination to make sure I would not die under the knife–intense.

Then…Thursday brought the surgery. Would never have discussing all the paperwork have helped me through time that followed the operation. Absolutely.

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Another unrelated photo courtesy of the Morgan Library and Museum:

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A man’s gotta do what a man’s got to do.

I am thinking of me in this role. Filling out a Living Will is certainly a grown up thing to do. It is not a good idea to leave family and loved ones guessing about one’s intentions. The best way to do it is when there are no health issues involved. At nearly 66 years old, I should have been grown up enough to fill out the farm during a pacific time when asking family and loved members their thoughts did not bring out the intense emotion this exercise did.

Perhaps, the lesson of the angst of the Living Will taught me how to be a grown up. Perhaps.

–Joel Solkoff

Copyright © 2013 by Joel Solkoff. All rights reserved.

Before Arlo Guthrie sings all the words to Alice’s Restaurant, I would like to thank Law Depot www.lawdepot.com This online service provides forms that fit the requirements of the PA Living Will form and NY’s Health Care Agent form. Each can be easily modified or modified only to include names and addresses. A great service.

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http://youtu.be/b8DtpdXZi0M