Posted January 31, 2017
Click here to watch the presentation.
Having spoken to some of you since the announcement of this evening’s program my suspicion is that the title of this talk has cast a bit of dread over many of us. Yet my hope and intention this evening is that our consideration of Caring Conversations: Facing Our Mortality will provide the opportunity for an experience, a conversation that can be both uplifting and incredibly helpful and powerful. For this rare opportunity we should be grateful to Rabbi Marion Lev-Cohen and Howard Sharfstein who together worked to create the program “What Matters: Caring Conversations about the end of Life.” I also want to express our gratitude to Plaza Jewish Community Chapel and UJA-Federation which have supported this venture and the “facilitators” who are helping our families in these conversations.
In his landmark book that has become a scripture for many of us, Atul Gawande admits “I am leery of suggesting the idea that endings are controllable. No one ever really has control. Physics and biology and accidents ultimately have their way in our lives. But the point is that we are not helpless either. Courage is the strength to recognize both realities.”1
From the beginning Judaism has recognized both realities: we are neither in complete control nor are we helpless. Perhaps the fundamental Jewish text as a source for this discussion is the final chapter of the Torah which presents a bit of an inherent conundrum. Though tradition assumes the Torah to have been written by Moses the question then is how could Moses have written the narrative of his own death? Possible answers are given in the Midrash, a body of rabbinic text that attempts to deal with these kinds of contradictions and lacunae in Biblical text. But my favorite is implied in Elie Wiesel’s framing of the moment of Moses’ death.2
In Moses’ case, it was not accident, physics, or biology that closed the window on his life. According to the Torah, it was God. Moses’ fate was sealed when he did not trust God’s promise that water would come from a rock if he simply spoke to it. Moses picked up a rod as God had commanded. Then in a fit of petulant frustration and ire, instead of speaking to the rock as instructed, Moses furiously battered the rock not once, but twice. God perhaps in a bit of a snit, punished Moses by prohibiting him from entering the Promised Land, the very goal toward which Moses, at great personal sacrifice, had led the Israelites for four decades.
Moses’ destiny was sealed. But when the time came for the Israelites to cross the river Jordan without him Moses did not accept his fate gracefully or passively. He wanted to live. He wanted to properly conclude his mission, He begged, cajoled, argued with God to permit him to finish his journey to the land of Canaan before he died. Taking Moses’ pleas into consideration God finally consented to at least allow Moses to overlook the Promised Land from the summit of Mt. Nebo, east of the Jordan River so he could see from afar the place where the Israelites would in the future establish their lives and eventually their nation.
According to the Midrash recounted by Wiesel Moses finally accepted the inevitable. He was going to die. It is said that Moses spent his last hour blessing Israel’s tribes individually pouring out his heartfelt yearnings for each of them. Then escorted by his son Pinchas, his disciple Joshua and the priest Eleazar Moses began his ascent to Mt. Nebo. Reaching the summit, he halted. “You have one more minute” God warned him. Then calmly Moses lay down, closed his eyes, folded his arms across his chest. “Silently God kissed his lips. And with that (nishikat Elohim) kiss of God the soul of Moses found shelter in God’s breath and was swept away into eternity.”
According to the tale, though not able to prolong his life, Moses was able to envision the future, to understand that his life’s work was fulfilled, to rejoice in what he had accomplished and to take time to bless his larger family, the Israelites. With that appreciation, he had the courage to accept that he was going to die and the future would unfold without him as is the nature of existence itself.
I suggest this story as a paradigm for us. There is much to learn from it? Here are the lessons I’ve gleaned:
This last story in the Torah is a lesson for us about confronting mortality. In our tradition Jews are instructed to leave ethical wills as they would leave wills for the distribution of their property. Ethical wills grew out of the yearning of parents to consider, write and talk to their children directly about the values they wanted to bestow upon their offspring, the identity they would choose for their children and to make it clear what mattered in their, the parents’ lives. But from the beginning Jews were also encouraged, in addition to leaving ethical wills, to be as fully and courageously in control at the end life of as they were forcefully in control of the way they lived their life.
I suggest we take to heart these five lessons from the Moses story: control, consciousness, conscience, confidence, and courage. For convenience I name them the five “Cs” These five principles are guideposts in composing the content, purpose and demeanor of the conversations we lovingly promote this evening. While they should be ultimate guideposts throughout our life they are essential anchors when we confront mortality.
Conversations about mortality compel us to address an incipient reality, to be passionately honest, impeccably forthright, and forcefully reflective. From my perspective as a rabbi the most difficult moments and conversations I have had in my career have been around this matter. And this is the point tonight.
Too often these conversations about “the way of death” happen too late when families and loved ones are huddled at the foot of the bed when someone they love appears close to the end. These conversations belatedly happen at a time technically referred to in Jewish law as “Goses” best translated as “the dying condition.” “Goses” refers to those days when a person hovers between life and death, often when that person is unable to speak their mind due to incapacitating illness, agonizing pain, or comatose unconsciousness. And those family members and/or other loved ones that are debating what to do are compelled to make decisions about the health care or the dying-care of someone who cannot speak for him/herself. That’s what we’re urging you to avoid.
Because, without prior conversation, we try to get inside the mind of our dying loved one, presuming how they would want to be supported on their journey to death or whether and on what basis they would want another medical procedure or whether they would want to be put on, or removed from life support. Oftentimes by projecting our own desires we determine whether we should continue medication or remove a feeding tube. We look to the medical or hospital ethicists or clergy who properly provide some parameters but who will typically and properly not make the decision which needs to be made. And we as advocates, decision makers, and agents feel buffeted by uncertainty, conflicting possibilities, and sometimes unresolved family dynamics.
And what makes this all so profoundly sad is that no matter how comatose a person may seem I believe that the patient in that bed may still have a functioning brain with ability to hear, if not to comprehend, and perhaps to understand but not be able to speak. I imagine the terror of not being able to tell the people who are around you and love you what you want to be done for yourself at that moment. It is terrifying that at some point we might be a prisoner within our own body incapable of controlling what will happen to us or for us.
And Jewish sources that relate to the dying condition might be instructive but definitely not determinative. For our sources contain an inherent conflict.
On the one hand there is absolute certainty that we cannot do anything to hasten death. But on the other hand there is an equally unambiguous directive that we cannot interfere in the dying process.
This is the problem: Maimonides directs that one cannot hasten death. In his words “One who is in a dying condition (that is a goses) is regarded as alive in all respects,” In practical terms the removal of life support systems could be considered as hastening death, therefore sinful.
On the other hand, we are taught we cannot intervene in the process of dying. The thirteenth-century Rabbi Judah ben Samuel teaches that “if a person is dying and someone nearby is chopping wood occupying the dying person’s focus preventing the soul from departing one should then demand that the woodchopper leave the area.”
The proof text supporting this opinion is from the Talmud. (Ket. 104a). It tells the classic story of the last days of Rabbi Yehuda ha Nasi, the iconic compiler of the Mishnah. His disciples prayed round the clock imploring that mercy be granted so that the great Rabbi, their teacher, would not die.
But Yehuda’s handmaid who physically cared for him thought differently. She opposed the prayers of his disciples and students believing they were unjustifiably keeping Rabbi Yehuda ha Nasi alive. She knew that her master, this great teacher and scholar was suffering horrific acute pain and an appalling diminution of personal cleanliness and dignity. She observed his agony when going to the privy as he painfully labored to take off and put on again his tefillin.
So Yehuda’s handmaid took matters into her own hands. She went to the roof of his house took an earthenware jar and threw it down from the roof to the ground. The smashing noise momentarily distracted the Rabbi’s students, disrupting their prayers, and in that instant the soul of Yehuda ha Nasi departed.
In the Talmud the handmaid, and not the students, is praised for what she did. She permitted one of our greatest teachers to die.
Often that is the crux of the dilemma faced by family without prior guidance by their loved one. Is living on life-support really being alive? Is removing it a form of active euthanasia?
Is withholding medication murderous or is it simply permitting death to happen? Without prior guidance or conversations these are agonizing predicaments left to families to navigate.
A statement from the Department of Bioethics of the Cleveland Clinic advocates that “…avoiding death should not always be a preeminent goal. Not all technologically possible means of prolonging life need be or should be used in every case.”3
Surveys show that people with serious illness “have priorities besides simply prolonging their lives…their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others and achieving a sense that their life is complete.”4 About these priorities each of us needs to be clear and to convey our priorities to our advocates.
I think the tradition would maintain the use of extraordinary means in support of healing and a person returning to a value of life they would be comfortable living. But if the person on those life-supporting devices is being sustained with waning hope for recovery, they could be removed thereby allowing the person to continue on the journey to death.
My impassioned entreaty is to have these important conversations right now. We are all inching towards the end of life, hopefully sometime in the far future, but this matter is not purely academic for me. For I was there.
Some of you may remember that 17 years ago when I was in my 50’s, I had what my doctors eventually described as a “significant cardiac event”. Except for the fact that my heart attack occurred when I was in NYC, close to the best hospitals at a time when traffic in the city was very light the outcome could have been much worse.
But as a result of lying in the CCU feeling the beat of a heart pump which took over for a period of time for what my weakened heart wasn’t able to do on its own I am very aware of the agony of not being able to make decisions on my own behalf. Fortunately, Kerry and I had these discussions previously. She knew my wishes, what hospital I preferred, how I thought about life-support when return to manageable health wasn’t possible, what level of extreme measures was unacceptable.
The only way to be confident about that autonomy and control is to consciously and courageously allay our own fears and the conscience of our advocates by being direct about our desires and the way we want to be cared for, and if need be, ushered and supported on the journey to the end-of-life.
Of course there is sadness and sorrow along the way.
To be human is hard and with all else I’ve spoken about I need to acknowledge that to be the parent of a sick child is uniquely wrenching. The sorrow of being part of something which is out of order, whether it be the illness or most tragically the death of a child is an indescribable pain with words that only other parents in a like situation can understand. In this excruciating scenario when a child can’t be part of the conversation it is important even without abandoning hope that parents consider eventualities if necessary within the circle of their larger family.
Whatever your life or health situation we encourage each of us, both as one who may need to rely on others as your health care agent or as one who may be compelled to be the decision-maker on behalf of someone who will rely on you as their agent to have these conversations about what matters to us as we face mortality. And there is no better time than to do it now.
Gawande puts it typically succinctly “Whatever the limits and travails we face, we want to retain the autonomy – the freedom – to be the authors of our lives. This is the very marrow of being human.”5
I’ve told you my story as a patient. Now here’s my story as an agent. My father had a heart attack when I was in college. He was in his early fifties and lived the rest of his almost four decades of his life focused on staying healthy. As he neared his 90th birthday he did die but as a result or my dad’s long time heart condition my two brothers and I had clarity about what he wanted as he neared death. We knew he desired that we pay him attention, but not too much attention, and above all he yearned that we do everything possible to maintain his dignity.
Eventually the committee of his three sons decided to transfer him to a nursing home so that he could receive the necessary healthcare he could not receive at home. I remember his last day vividly. I went to visit him at about noon and found him sitting in public in a wheelchair by the nurses’ station slumped over in the chair, prevented from falling out by a seatbelt around his waist. I asked the nurses why he was not in bed. Their answer was valid. They said “so that we can keep an eye on him. He’s very weak and very sick.” I knew that publically sitting in a wheelchair slumped over in no way maintained my dad’s wishes so as his advocate I told these caring nurses “Look my father is going to die. We know that and you know that so let’s allow him to die with dignity. Please put him back to bed immediately.” And they did.
Four hours later I received the call; “My father died.” I told the nurse to leave him in bed until I arrived. I was by his side within the hour and remember him as clearly now as I saw him the moment I entered the room. His amazing silver hair was combed, he looked peaceful and handsome, with the blanket tucked around him, his arms above the sheets and his head lying rather beautifully on his pillow. I laid my head on his chest, told him how much I loved him and cried.
My dad died gracefully and with dignity according to his wishes. In that my brothers and I had kept our promise.
But it was not so for my mom. My mother died according to her sons’ eventual consensus that there would be no extraordinary measures taken to intercede in her dying condition. But though we supposed my mom wanted to die at home, and not in a nursing home, the committee of her sons disagreed about this to the very end. Short of her instructions or indications to the contrary and after going for counseling together my brothers and I opted to maintain the strength of our fraternal relationships rather than to fight about whether we should keep my mother at home. Since we had no directives my mom died in a locked dementia unit in a nursing home. Sadly, about this she had no say and I regret that terribly.
Thus we urge these ultimately important conversations about the end of life. The guidelines of consciousness, conscience, confidence, control, and courage are a roadmap, a checklist of sorts. Such discussions are the substance of life itself, the core of being human, the essence of being Jewish. We best get on with it for there is no better time than now.
I will always regret I lost that opportunity with my mom. I implore you, not to lose it for yourselves or the people you love. Conversations about the end of life may not be easy at first but they can be extraordinary and wonderful Best of all they will be a bequest that we all can give and receive, a gift that will endure to the end. And on this journey I wish us all well with the belief that God will be with us.
Posted November 9, 2017
Posted November 2, 2017
Posted September 27, 2017
Posted August 30, 2017
Posted May 25, 2017