A Jewish Perspective on Illness and "End of Life""

I am calling this "A Jewish Perspective" because it is mine.  I can't speak for anyone else except I do know a lot of fellow Jews who agree with me.

I have blogged about being my mother's care giver, so you've probably read the background information that my mom is 89 (Thank G-d!) and in failing health.  I've documented struggles communicating with her many nurses.  I've grown so weary of explaining the same thing over & over & over again. I tell them I want a happy, optimistic atmosphere around us, whether in our home or hospital room.  I retell the story of how my mom tore up her "advance directives" more than 10 years ago in her attorney's office.  My father, of blessed memory, had just died.  She said she didn't want her advance directives in place anymore.  She said they took all hope away from the family & that if she was ever in that shape she wouldn't know the difference anyway.  She wanted her healthcare power of attorney ( at that time my brother, now it is me) to do what s/he wanted or thought was best. I will add that at that time she was perfectly competent to make this decision.

A few weeks ago, a nurse insisted upon  pursuing this subject over my objections because she was convinced my mom was having "mini strokes" which might lead to a "major stroke" from which she would not return. I explained my belief system as well as telling that advance directive story yet again.  I emphasized that no matter what happens, this is her home for the rest of her life.  I am committed to being her caregiver for as long as is needed.  I told the nurse firmly that I thought we had already covered this subject and that my goals & ways of doing things reflect my religious belief. I told her I understood what damage a major stroke could cause. (by the way, my mom has not been having mini strokes. Further testing has revealed that she has been having trouble with her heart.  Medication changes have been made.  Some drugs contributing to the problem have been discontinued.  So much for nurses diagnosing strokes.)  The nurse said "I just wanted to make sure you didn't have your head in the sand".  Who cares? Facing "reality" is over rated in my book.  Why do nurses think that if they just hit you in the face with the facts, that you will change your mind & start agreeing with them?  For the record, I know the reality of this situation, I choose not to talk about it.

Every person has their own definition of "extraordinary measures", at least they should.  I have an idea of how I will act in the future as regards my mom's care, but there are no hard & fast rules.  I will respond to each situation as it comes up.  At hospitals, I hear the tone that is used when talking about my mom's "full code" status (in other words I want everything done).  The tone is one of disdain & disbelief that I would want that for my 89 year old mother. I have worked in hospitals & nursing homes.  I know that as soon as some one is designated a DNR (do not resuscitate) most staff just don't try as hard.  I don't trust them not to get casual about routine care, treatment of infections, medication adjustments, etc if she is a DNR.  I would probably put a stop to resuscitation pretty fast if I were there, but I refuse to let that get in her medical records because of my lack of trust that people will continue to give my mom the best care she deserves.

I don't believe in hospice.  I realize that is not the popular view.  I don't care, I don't want it.  People are in disbelief when I tell them this.  They try to talk me into agreeing with them.  They extol its virtues.  Some people bring it up with me over & over again.  I have to say twice is my limit.  If there is a third or fourth time, I do not respond well.  I hate confrontation & drama but I will not be bullied.  Don't misunderstand, my mom is a looooong way from needing hospice, even if I believed in it.  In the same vein, someone else trying to ascertain my goals for the future (she was well trained & the most compassionate & accepting person who has talked to me about these subjects) brought up the "fact" based on "research" that it does not hurt to starve to death.  I am not buying this, I never have & I doubt I ever will.  As I said, I have worked in nursing homes & I've seen this first hand.  Thank G-d my mom still has a good (though picky) appetite & has no problem chewing or swallowing.

I think it is funny that the people who are telling me that I have my head in the sand are the same people telling me my mom should be eating low salt, low fat, multi grain & low sugar foods.  We do encourage all of those things, but when my mom wants ice cream, she gets ice cream.  If she doesn't like the multi grain bread, I get her white bread. On one hand I feel they are all pushing her into her grave (G-d forbid), but they want her to be eating a healthy diet when she gets there. (grim humor, but that's me)

 One other anecdote, my mom has expressed to me over & over that she does not want to die & that the thought of it makes her afraid.  I told a nurse & she was astounded because as she said "your mom seems so religious".  I thought "Huh?" I asked someone about this later.  How can being religious mean you are not afraid of death? I think is must be a belief of other faiths.  I am not sure.

 I welcome comments, but please focus on your life experience or beliefs & don't try to talk me into or out of anything.  I am tired of the battle & as I said I won't be bullied.

My mom is the third family member I have given care to.  First there was my dad.  I didn't do much more for him than keep track of his medicines, drive him to appointments, hire professional caregivers ( & fired 2), test blood sugar/ blood  pressure, etc.  Then I took care of my sister of blessed memory.  I did almost everything my sister needed.  I learned how to set the pumps & give her TPN & pain medication IV's.  I gave her those shots in her belly to avoid blood clots, I drove back & forth to Phoenix before she moved down here to our home. Her illness was a special journey with a sister I loved more than you could imagine.  We had always been close, but that experience brought us even closer.  My sister remained optimistic of recovery till the end.  We never talked about death.  I didn't want to but would have if my sister gave me signals that she wanted to, but she did not.  The day before she died she asked me if we could go to Phoenix the next day to visit her pets.  I said yes. While she was sick I spent a lot of time on the computer next to her bed reading Chabad.org looking for solace & support.  I found an article that had a profound effect upon me.  It prompted me to write the following:

Life Plan

The Jewish point of view is that life & death are events controlled by G-d.  Every soul that is brought into this world serves a very special purpose; as such each individual is indispensable.  The soul’s mission may take a full lifetime in a body to complete, or perhaps just a few days.  Life is precious and our wishes for Rebecca reflect this philosophy.  We pray that the mission for her soul will take a full lifetime to complete.

We FIRMLY believe that a positive outlook can lead to positive outcomes.  Therefore, we ask that everyone who is caring for Rebecca look inside themselves to create a happy & positive environment.  With G-d’s help, you will become a partner in a very special outcome.  It is unacceptable to us to just watch Rebecca die, as some doctors in Scottsdale suggested at the first of May.  We feel strongly that G-d does not give doctors permission to state that there is NO hope.  There is always hope & one must always try to help to the utmost of their ability.  As a family, we have been fighting for Rebecca’s health.  We feel strongly that the possibility exists that the diagnosis might not be so bad, or perhaps, G-d might make a miracle happen.  (These past several months have been precious & valued.  Rebecca & the rest of the family are convinced that miracles have happened to allow us this time).  We do not accept her prognosis not out of denial, but out of conviction.  Although we worry (a lot), we feel it is necessary to create our own reality with our thoughts, attitudes, words & actions.
There is a Yiddish saying “Tracht gut vet zein gut (think good & it will be good).  We are doing as much as we can to effect a change spiritually in hope that it can change things physically.  Thank you for respecting our wishes that only positive things be said in Rebecca’s presence.

The Siegel family
(Personalized with permission of the author of “Yerachmiel”, a memoir available at Chabad.org)
Written 9-7-2006