It's Time We Talk: On Life and Death, Yom Kippur, 2013

It’s Time We Talk: On Life and Death Rabbi Ed Feinstein Yom Kippur, 2013

This isn’t going to be an easy sermon to hear. It certain won’t be easy to give. But it is necessary. And Yom Kippur is the time to do it.

We call Yom Kippur the holiest day of the Jewish year. It is certainly the most unusual. All of our holidays and all of our traditions are about celebrating life. When we lift a glass of wine, we say, “L’hayyim,” To Life! Every ritual law of the Jewish tradition is suspended when life or health is at stake. We are always ready to say the bracha, “She’hechiayanu,” praising God for the gift of this moment of life. Choose Life is our most cherished commandment. Everything that is Jewish is about life. Except this holiday. This is the only occasion of the year when we focus on death. Today, we literally rehearse death. We fast (which for many Jews may be worse than death). We remove our jewelry and finery, our fashionable clothes, our polished, comfortable shoes, to don a kitel — a death shroud. We literally wear what we’ll be buried in. We try it on, this one day. Over and again, we will recite Vidui, the confession, just as one does before death.

Yom Kippur is about death because death has something important to teach life. The Psalmist prayed: “Teach us to number our days, that we may get a heart of wisdom.” Confronting the reality of death forces us to give up all the rationalizations, the excuses, the defenses, the self-deception that keep us from filling our days with life -- from pursuing our dreams, reaching for our ideals, deepening our relationships, cherishing sacred moments. Knowledge of death is the ultimate solvent. The harsh truth that no one has an infinite number of tomorrows dissolves away all that obscures our vision of what really matters in life, and how we have repeatedly been distracted and drawn astray, how we have been negligent, oblivious, evasive, and foolish. It’s painful. But it allows us to begin again -- to correct the patterns of self-destructive behavior, to loosen the lies that bind us, to apologize and make repair what we’ve broken. Today, we confront death so that tomorrow, we might begin a life renewed.

And there something else that death comes to teach us today.

Over and again, we will chant the chilling words of Unetaneh Tokef: Who will live and who will die; Who at their time, and who before their time; who by fire and who by water; who by sword and who by beast; who by earthquake and who by plague. And the temptation is overwhelming to think that prayer is talking about someone else. Who will die? Not me. Maybe the fellow snoozing in the next row, but not me. Death is the deepest taboo in human consciousness. We martial enormous psychic energy to push away the reality of our finitude, that each one of us will one day meet death. But we pay an enormous price for that denial. And in our time, the price has risen sharply.

Who will live and who will die? Notice that all of kinds of death mentioned in that prayer, terrifying though they may be, are sudden and unexpected. Fire, water, sword, beast, earthquake, all come without warning and without remedy. For most of human history, that’s how most people died. In war or by natural catastrophe, of accidents or injuries, of catastrophic incurable illness. People died quickly, often by conditions we consider trivial – George Washington developed a throat infection on December 13, 1799, and was dead the next evening. People succumbed to infection following a cut with a household knife or a broken leg. Women commonly died in childbirth. And newborns were taken by whooping cough, croup, or diarrhea. People died of diseases we barely know thanks to advances in public health and vaccination: cholera, tuberculosis, typhoid, measles. Disease came without warning and without remedy. Like bad weather….you either got through it or you didn’t. There was little anyone could do.

That’s not how we die today. Sudden, catastrophic illness, accidents, terrible injuries still happen. But most people today die after a long medical struggle with an incurable condition – cancer, heart or kidney or liver failure, Alzheimers disease, complications of stroke, the debilities of old age. Death is certain, but the timing isn’t.

As soon as these maladies are detected, modern medicine goes to battle stations. It’s actually awesome to witness. Sophisticated diagnostic technologies are deployed: CAT scans, MRI, varieties of blood tests. Surgical and medical strategies are launched. Pharmacological and nuclear medicine are advanced. Life goes to war against death. Today, medicine can replicate most of the major organ functions: A heart pump can circulate your blood, a ventilator can breathe for you, a feeding tube can provide nutrition, dialysis replaces your kidney function. Someday, there will be an artificial liver and pancreas. The life of the body can be extended almost indefinitely. Every organ system can be replicated, except consciousness, except the mind. But is that life? Is that what we really want? Is that how we want to spend the last days of life?

Seventy-five percent of Americans say they want to die at home. Only twenty-five percent do. More than 70% die in a hospital or care-facility, on stiff hospital sheets beneath cold florescent lights, often under heavy sedation, unable to say “I love you,” or “Good-bye.” Surveys of terminally ill patients find that they have concerns besides simply prolonging their lives. They want to avoiding suffering, they want to be with family, have the touch of others, be mentally aware, and avoid becoming a burden to others. Fulfilling those desires requires a different way of dying.

Modern medicine is a miracle. It has doubled our life expectancy within a century. But with miracles come responsibilities. And today, we find ourselves with responsibilities unanticipated by the Jewish tradition; unanticipated by American culture; unanticipated by most of us personally. Once, it was God who decided who will live and who will die. Now we have to decide.

I’m asking you to have a conversation with those closest to you. It may be the most difficult conversation you ever have. But it may be the most necessary. I want you to talk about dying. Begin by talking about parents and grandparents, relative and ancestors whose deaths you experienced. How did they die? What did their dying teach you?

And then talk about your own dying. Everyone needs advanced directives, living wills, and powers-of-attorney. But I’ve studied enough Talmud to know that a document is only as informed as its interpretation. You need to communicate with your loved ones what you want your final days to be like. What do you need for a reasonable quality of life? When should the fight for your life be carried forward, and what are you willing to endure? And when would it be permitted to say, “enough?”

I know you’d rather talk about anything else. But there are important reasons to have the conversation.

Listen to a true story. Harvey Nuland was a 62-year old accountant living in New York. He loved his work, served as president of his shul, but his greatest joy was his family. He married late in life, and didn’t become a father until he was past forty, and felt that the closeness he had with his wife and two sons was a blessing beyond his prayers. Harvey was healthy, until the morning he went to see his doctor about some bowel irregularities and pain. The doctor discovered a large mass on the right side of his abdomen. Tests confirmed that he had cancer.

Harvey’s only brother is Dr Sherwin Nuland, chief of surgery and professor of medicine at Yale University Hospital. Dr Nuland has written a great deal about contemporary medicine. In his book, How We Die, he tells the story of his brother’s struggle. It is a deeply personal confession. And a cautionary tale.

Harvey went to surgery. The surgeons successfully removed the part of the bowel where the tumor originated, but discovered that the cancer had spread widely through Harvey’s body. When he awoke from the surgery, Harvey turned to his brother, the famous doctor, for guidance. At that time, there was no treatment with any chance of stopping that cancer. But as a loving brother and the doctor in the family, Nuland could not admit to his brother that there was no hope; that there was nothing to be done. He could not admit it to the family. He could not admit it to himself. He confesses:

“I could not face my brother and speak the words that should have been said; I couldn’t tolerate the immediate burden of hurting him, and so I exchanged the possibility of comfort that may come with an unhampered death for the misconceived hope I thought I was giving him.”

Dr Nuland arranged for his brother to receive an experimental protocol of drugs. It was brutal. The protocol demanded extended hospital stays. It ravaged his body, bringing more suffering, and robbing him of time with his family. And it didn’t stop the cancer. In the end, Dr Nuland admits,

“Where my own brother was concerned, I had forgotten or at least forsaken the lessons learned from decades of experience. Thirty years earlier, when there was no chemotherapy, Harvey would probably have died at about the same time that he eventually did, of the same [causes] but his death would have been without the added devastation of futile treatment and the misguided concept of hope that I had been reluctant to deny him and his family, as well as myself.”

Every doctor in this room can tell you the same story.

At moments of health crisis, we look to doctors. We are unable to make the choices, so we say, Doctor, Do Something. Give us some hope. God bless doctors. But you need to know a secret about doctors. They’re not good at death. They’re trained not to accept death. Doctors are trained to be warriors against death. Death is the enemy, the opponent. Death is defeat, and they will not be defeated. But that means that very rarely will a doctor tell you there’s nothing more that can be done. They don’t want to disappoint a patient or a family. But sometimes, death isn’t defeat. Sometimes it’s inevitable, even merciful. No one, least of all a physician, wants to take away a patient’s only hope. But sometimes there are other forms of hope that we need. There are other forms of healing.

Ordinary medicine is about extending life. We sacrifice the quality of life now, to gain length of life later. I underwent months of very uncomfortable chemotherapy for the promise of having the years to see my kids grow up. Today, I’m very healthy. And I am grateful for physicians who were ready to fight for my life.

Medicine is the fight to extend life. But there comes a time to change direction. There comes a time when the fight to prolong life is futile, when it has little chance of extending life, and the collateral damage – the discomfort, disability, indignity – robs us of life’s quality. We pray for refuat ha-nefesh v’refuat ha-guf, for healing of body and healing of spirit. There comes a time when we much choose between them….To give up the fight….To stop worrying about what’s coming later, and provide the fullest possible life now…offering the patient what is valued beyond longer days – to be at home and not in the hospital; to be free of pain and discomfort; to be mentally aware and alert and not sedated into delirium; to be with loved ones and friends and not surrounded by impersonal strangers; to be able to share final words and wisdom and say goodbye. There comes a time when these are more important to us, ki hem chayeynu v’orech yameynu, because this is what life is for – to share family, friendship, love, wisdom.

How do we know when it’s time? That only comes when we are ready to accept death as real, as inevitable, and not as a defeat. It only comes when we’ve talked about what being alive means to us, what we most value in life, and what we’re willing to endure to maintain that life. That begins with your conversation this Yom Kippur.

Otherwise, here’s what happens. We are all in the family waiting room at the hospital. A loved one is in intensive care. The doctors need to know what we want them to do. They need to know now. Put in a ventilator? A feeding tube? Treat the infection? Re-start the heart? Under that pressure, it is extraordinarily difficult to make wise decisions. We argue with one another. Sibling against sibling against spouse against children, the family who lives nearby and has been dealing with this for months or years against the family that has just flown in….

What would she would have wanted? What he would choose? What’s right?

Whatever decision is made, the family will never again be whole. They will forever look at one another with suspicion and ask: How could you? Why didn’t you love him more?

These decisions are never black and white. There is always a degree of uncertainty. It’s a normal part of grieving to worry if we’ve done the right thing, done all we could do. But without a conversation sharing our wishes and values, we leave the one who must finally decide forever haunted: Did I do the right thing? Did I give up too soon? Should I have done more? Was I thinking about him or about myself? What if…?

We Jews believe there might be an afterlife. But of this I am certain, there is an after-death. After death we with either leave a legacy of second-guessing, guilt, depression, acrimony, family turmoil, and recrimination, or we leave a gift of peace, wholeness and gratitude.

Dr. Susan Block is a nationally-recognized pioneer in the field of palliative care. She trains other doctors how to have difficult conversations with their patients. Eleven years ago, her father, who was 74 at the time, a retired professor of psychology, was diagnosed with a mass growing in the spinal cord of his neck. The neurosurgeon said that if he had surgery to remove it, he stood a 20% chance of being paralyzed from the neck down. Without the surgery, he had a 100% chance of that paralysis. The evening before the surgery Dr. Block and her father talked about friends and family to keep their minds off the next day. She left for the night. Halfway home she said to herself, "Oh my God, I don't know what he really wants." She turned around and went back to her father.

Expert though she was in end-of-life discussions, she felt horrendous going through her list of questions with him. She eventually said these words: “I need to understand how much you are willing to go through to have a shot at being alive, and what level of being alive is tolerable to you.” In the ensuing conversation, he eventually said, "Well, if I am able to eat chocolate ice cream and watch football on TV, then I'm willing to stay alive. I'm willing to go through a lot of pain if I have a shot at that."

The surgery presented complications. To save his life, they would need to go back in, with further disability to follow. Dr. Block had three minutes to make this decision. She realized he had already decided for her. She asked the surgeons if her father would be able to eat chocolate ice cream and watch football on TV. They said he would, so she authorized the surgery. He survived ten more years, wrote two books and dozens of scholarly articles.

Reflecting on her decision, Dr. Block said, "If I had not had that conversation with him, my instinct would have been to let him go at that moment because it just seemed so awful. And I would have beaten myself up. Did I let him go too soon? If he had become thoroughly disabled by the emergency surgery, I would have felt so guilty that I condemned him to that.”

Ten years later, the complications of aging and disability made swallowing too difficult for him. After rounds of hospitalization and rehab, pneumonia set in. He stopped fighting and came home to hospice care, and died peacefully with his daughter at his side. There is such thing as a good death.

There is much more we could talk about. This issue has tremendous implications for public policy. 30% of all Medicare is spent on the 5% of Medicare patients in the last year of life. And it’s growing. We’re literally paying for our inability to accept death. And what happens when insurance companies get involved? Should we allow patients under certain conditions to receive assistance in ending their lives? How thin is the line between aggressive palliative care and hastening death? Big questions for another time. Tonight, it’s personal. I’m not concerned tonight with the national conversation but with your conversation.

No sermon this year. Just conversation with my kids. Yonah, Nessa, Raffi. Don’t worry. I’m fine. I’m healthy. But that’s when we should have the conversation. It’s harder when someone is sick and everyone is worried.

In my life, I have had many great teachers who shared their wisdom, insight, and passions with me. And cancer has been one of the greatest. I didn’t ask for cancer, and wouldn’t wish it on anyone. But I’ve learned much from cancer.

Cancer taught me just how fragile life is. How everything that is precious and important to us can be wiped away in an instant. That’s a very scary truth. It also taught me that the only thing in the world stronger than the fear of that fragility is gratitude. Gratitude for all the blessings I have enjoyed gives me peace.

Of all those blessings, the most important to me are the people who have come into my life. The shelves of our home and my office are filled with great books filled with ancient and modern wisdom. On my desk, I keep a little card with a saying, not from any of those great books, but from a song I enjoyed when I was young. It says: “I thank the Lord for the people I have found.” I do.

I thank God for allowing me to spend a lifetime with my best friend, your mother, and all her love. I thank God for the three of you and the closeness we share. I thank God for my teachers, who have become friends. And for the friends, who have become my teachers. That’s my life. The relationships, the conversations, the sharing of wisdom and humor, of joys and sorrows, of laughter, of stories, of dreams.

As long as I can continue to share life with those close to me, I am prepared to endure almost anything. I’ve done it before. But the moment I can’t do that anymore, the moment I can’t tell a story to little kids, or share an idea with my students, or listen to the strivings of a soul, or learn something new from my teachers, or help someone in pain. If I can’t tell you I love you….let me go. That’s my life. Extending the function of my body without regaining that life, is nothing I want. Don’t feel guilty. Don’t argue about it. Don’t blame the doctors. Don’t blame God. God has given me a life of blessing beyond anything I could have asked for. I am grateful. And I am not afraid.

Rabbi Schulweis once wrote a bequest for his children. I have read it many times a funeral services, because it says everything I want to say to you.

For Those Beloved Who Survive Me

Mourn me not with tears, ashes or sackcloth.

Nor dwell in darkness, sadness or remorse.

Remember that I love you, and wish for you a life of song.

My immortality, if there be such for me, is not in tears, blame or self-recrimination. But in the joy you give to others, in raising the fallen and loosening the fetters of the bound. In your loyalty to God's special children -- the widow, the orphan, the poor, the stranger in your gates, the weak -- I take pride.

The fringes of the tallit placed on my body are torn, for the dead cannot praise You, O Lord. The dead have no mitzvot. But your tallit is whole and you are alive and alive you are called to mitzvot. You can choose, you can act, you can transform the world.

My immortality is bound up with God's eternity, with God's justice, truth and righteousness. And that eternity is strengthened by your loyalty and your love. Honor me with laughter and with goodness. With these, the better part of me lives on beyond the grave.

Please, this yontiff, have the conversation with your loved ones. And may the new year bring new life, deeper connections, and many blessings.

I am grateful to many friends who helped with the preparation of this sermon:

Rabbi Jack Moline,

Sally Weber

Dr Neil Wenger

Dr Bruce Samuels

Dr Av Bluming

Material for the sermon was taken from:

Sherwin Nuland, How We Die, (Vintage, 1995)

Erica Brown, Happier Endings, (Simon and Schuster, 2013)

Atul Guwande, “Letting Go,” The New Yorker, Aug 2, 2010