Advance Health Care Directive:  A Jewish (and Human) Necessity

Rabbi David Novak

Delivered on Rosh HaShanah morning, September 9, 2010/1 Tishri 5771.  Expanded from what was delivered.

None of expect to be incapacitated in such a way that we are unable to express the direction of our health care.

Yet it happens, more often than any of us would want.

Even though our High Holy Day liturgy has famous lines like “Who shall live and who shall die” ascribing the sum total of all of our fates to God’s hand, the fact remains that we human beings have the ability and the responsibility to articulate preferences by our own hand for those times when we are unable to express them.

This is done by creating an Advance Health Directive.

Last January I was in need of such a directive.  January 1, 2010 in the morning, fine.  By the middle of Friday night worship, not so good.  Saturday is lost to me, as is Sunday.

Apparently I was alert to make decisions on Monday and Tuesday but the entire week is lost to me.  

I was not aware of what happened to me, or of my surroundings, until late Saturday night.  By Sunday I was competent to express what I desired.

But what about the entire week?  I don’t remember anything.  

Fortunately I had a health care advance directive that I created during my time in California that left my partner with knowledge of what to do and the legal power to make decisions on my behalf.  This allowed my mother to defer to what he wanted.

This leads me to tonight’s sermon:  why it is a religious responsibility for every Jewish person to have an Advance Care Directive for health care.  

Why a religious responsibility?  Because we Jews are lovers of life.  

We respect and embrace medical care to preserve and extend life.  

We affirm p’kuach nefesh, the preservation of life as one of the highest Jewish values.  

Jewish people are required to take whatever steps are necessary to preserve life, even if it means violating other laws, such as those of Shabbat.   

And we affirm that while the liturgical trope of the Yamim Noraim, Rosh HaShanah and Yom Kippur, is that God writes us in the “book of life for good,” there is much that we can do to articulate our own wishes.One way that each of us can assert p’kuach nefesh for our selves is by creating an Advance Directive. 

If we could look under the skin in our bodies we would experience an architecture both marvelous and artful.  It all works together.  Heart, brain, lungs, liver, glands, blood, oxygen, air, food, joints, our senses.  The human body is miraculous.  When it works well we are really unaware--or unconscious--of our underlying health.  After all, when you feel well, why even think about it?  

And then there are those times when our health becomes an ever-present issue.   Rabbi David Hartman once said, “You never really appreciate the prayer for health until one of those passageways is blocked!”

Rabbi Hartman is, of course, referring to the prayer that is said each morning:  

Blessed are you, THE ARCHITECT, our God, the sovereign of all worlds, who shaped the human being with wisdom, making for us all the openings and vessels of the body.  It is revealed and known before your Throne of Glory that if one of these passage-ways be open when it should be closed, or blocked up which it should be free, one could not stay alive or stand before you.  Blessed are you, MIRACULOUS, the wondrous healer of all flesh. 

Complementing that prayer is what we pray in Kol ha Neshamah that does not ask God for divine intervention in the illness, but rather that those in the medical establishment use all of their skill and knowledge to bring about healing to grant us a length of days.  There is no promise to God that our individual merit will be recognized in response to our request.  

This reflects, to my mind, a theology of creation that believes that all was created at the time of creation, to be discovered in its own time.  This is why the advanced medical technology that we benefit from today makes me glad to live in 2010 instead of 1910.  Human knowledge coupled with technology has advanced medicine dramatically in the last hundred years.  Can you imagine what it will be like one hundred years from now?

Yet with all of the advances come new profound challenges, especially around end of life care.  There are now machines that can keep us alive, often indefinitely, often without brain waves, often without our choice. 

Few of us will make the journey from birth to death without encountering the medical system in a serious way.  Which leads to this most important question:  if we don’t think about what we would like to happen when we cannot advocate for our selves, what would happen?

What would happen is that doctors would be do whatever they could to preserve life.   This is the oath they have sworn to uphold.  Lacking a health care directive means you lack your voice in times when your voice cannot speak.  The lack of voice translates, perhaps, into decisions you would have never made for yourself. 

As a lover of life, as a Jew, as a human being, you cannot afford to lose your voice.  If you cannot speak for yourself, you absolutely must have an agent appointed, as well as a deputy agent, who can speak for you in times like this.  

Our desires must be respected because as Rabbi Elliot Dorff writes in “Matters of Life and Death” “the fact that we can medically do something does not necessarily mean that we should.”

Rabbi Dorff, a renowned medical ethicist, continues:  “Whether we should something depends, in part, on good medical information, but it depends at least as crucially on our own value system.” 

What needs to be done, he writes “requires us to relate this specific question to our broader concepts and values. Ultimately it is the patient who has the legal right and must take the moral responsibility to make the decision according to his or her own values.”

As a forceful advocate of the Advance Health Directive your silence does not become complicit in your care.   Your voice will be heard even when you cannot articulate what you want.  

Second, you will prevent your family from making difficult decisions, for example whether to maintain life support.  

As Rabbi Dorff sagely concludes:  “By filling out an advanced health care directive, a person saves near and dear ones from the moral responsibility of making such decision and from the arguments that may otherwise occur.”

In other words, no matter how emotionally taxing these moments are, your voice is allowing your family the comfort in knowing that they are doing exactly what you wanted.  

We are blessed with many things in Vermont, including support for creating Advance Directives for health care.  The Vermont Ethics Network publishes a booklet, “Advance Directives Vermont:  Taking Steps:  Planning for Critical Health Care Decisions.”  

What is so magnificent about this little booklet is how encompassing it is in guiding our decision-making in the health-care setting.  Let me assure you that I was gratified to have the strength to navigate many of these issues myself over the past several months--but if I had been unable, a directive such as this would have been akin to my own speaking, through my agent.

Thinking about these issues when you are in good or relatively good health gives you and your loved ones an opportunity to prepare for the sort of medical crisis that can happen to anyone at any time.  If your health is already compromised, it is important that you create your Advance Directive right away:  the people who love you need to know what you want, and it needs to be in writing.

No matter how young or old you are, how healthy or sick, you need an Advance Health Directive.  At any time you could have an accident or unexpected illness and suddenly be unable to speak for yourself.  

First:  choose an agent and if possible, an alternate agent, people whom you trust to make potentially difficult decisions for you, who understands your beliefs and values, who is likely to be available, and who is wiling and able to speak up clearly and firmly in a crisis.  Your personal physician cannot be your agent.   It can be a family member, but make sure that the alternate is someone who is outside of your immediate nucleus. 

Second:  Talk to your agent.  Make sure he/she understands you and is willing to support your views.  If you have someone who does not agree with your views, you should choose someone else.  What is important is that your agent faithfully represents what you want, irrespective of their own personal opinion. 

Third:  talk w/others; ask your doctor for any medical information you need and find out if he/she supports the instructions you plan to give your agent.  Your doctor may be able to recommend more effective ways to state your instructions.  Consult with your rabbi if you have religious questions, especially with respect to organ donation.

Fourth:  Write your Advance Directive.

The key step in writing your Advance Directive is to name your agent.  Once you have done that and filled out the form properly the law requires that decisions about your care cannot be made without considering your wishes.

Fifth:  Sign and distribute the document.

Sixth:  Review your Advance Directive.

Remember that for many people revisiting the Advance Directive is an ongoing process. Changes in your health may change your views about your Advance Directive.  You should talk to your agent as well as your doctor about these things.

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That’s the nuts and bolts of creating the directive.  Behind it is the process of distinguishing what you do and do not want to have happen for you.

These are not easy questions, and they should not be easy, for you are considering situations that few of us want to ever consciously consider.  

What do you value most about your life?

Do you hold any religious or moral views about medicine or particular medical treatments?  

Jews who think of  themselves as “traditional” believe that God as the giver of life is the only one who can take it and thus write directives that instruct the medical team to do everything within their power to preserve life.

Liberal Jews assert more authority over their own bodies and health and are willing to consider decisions that may allow the end to come sooner.  No matter what your religious beliefs, you need to consider them in concert with your other concerns.   This is why some people find it a good idea to talk with their rabbi during this process. 

Most people have heard of difficult end-of-life situations involving family members or neighbors or people in the news.  Have you had any reactions to these situations?  

Should financial considerations influence decisions about your medical care?

What other beliefs or values to you hold that should be considered by those making medical care decisions for you if you become unable to speak for yourself?

You can see just from this recitation that there are many, many factors that go in to shaping an Advance Health Directive.  

Medical Situations and Treatment

Next consider possible treatment plans:

A. I would want all possible efforts to preserve life as long as possible.

B. I would want comfort care only and would not want medical treatment, including tube feeding, to prolong my life.

C. I would want comfort care and tube feeding, but would not want other types of medical treatment to prolong my life.

D. My agent should consider the possible benefits and burdens of disease-fighting treatments and consent only to treatment that he or she believes is in my best interests, as we have discussed them.  My agent may refuse any active treatment and then stop treatment if it is not beneficial. 

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Then review possible medical situations:

Suppose you are dying.  You are unconscious and death is expected soon, with or without treatment.  What treatment plan would you want?

Suppose you are permanently unconscious from an accident or severe illness. There is no reasonable hope of recovering awareness, but life support could keep your body alive for years.  (persistent vegetative state).  What treatment plan would you want?

Suppose you are in advanced loss of mental capability.  You cannot recognize or communicate with those close to you and can do almost nothing for yourself.  You could survive in this state for some time with medical treatment.  What treatment plan would you want?

Suppose you are frail, chronically ill, and uncomfortable, with a limited range of activities available to you. Then you become unconscious, at least, temporarily due to an acute illness. The illness is likely to be fatal unless vigorously treated in a hospital, but even intensive care offers only a small chance of recovery to your former condition.  It’s much more likely that you will end up worse off than before.  What treatment plan would you want?

Suppose you suffer a serious injury or illness.  You have less than a 5 percent chance of good recovery and if you will survive you will ever serious brain damage.  What treatment plan would you want?

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Trust me that the above was not designed to depress you.  Nor was it reviewed to make you feel out of control of your own life.  What it is is planning for contingencies in life, the contingencies that we all face at one time or another.  

If you love someone please make sure that there is an Advance Health Directive.  To help you in creating one I’ve acquired for us the little booklet from the Vermont Ethics Network.  Much of what I’ve spoken of is in this booklet.  While its suggestions may shape your thinking, you are ultimately in control of expressing your preferences and then choosing an agent that will uphold them for you, especially in a time of crisis that could involve decisions of life and death.

Our liturgy this time of year asks that we be written in the Book of Life for good.  While are prayers are directed to God above, the work of our hands and our heads can be directed to creating our Advance Health Directive.  

Who shall live and who shall die is not just a matter of our liturgy, it is a matter of our agency.  We should all enjoy good health in the new year along with the peace of mind that our health care directives are completed, making our voices heard even when we cannot speak.