In 2002, I served as the lead author on this work on palliative care. I had the opportunity to work with Joseph Fins MD, the chief of medical ethics at Cornell, and Rabbi Tsvi Blanchard. It has now been re-printed. If you or someone in your life is facing serious illness, this little book may be a big help. Forward by Senator Joseph Lieberman.
Embracing Life and Facing Death – A Jewish Guide to Palliative Care
Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place. – Susan Sontag
One of the paradoxes of the human condition is that even though we know that we are mortals, we wish that those we love could live forever. We also wish that our own lives could be lived out with less pain, suffering, uncertainty and fear. But incurable diseases know no boundaries of geography, religion, race or ethnicity. Life-altering sicknesses eventually make their presence felt in our lives, forcing unexpected changes.
But the ways we react to these changes vary in each culture and in each family. In the last decade, new advances in medical technology both have made it possible to live longer with serious disease and have complicated the choices we have in treatment. Collectively, these new realities have impacted the ways communities, families, and individuals are responding to illness.
If you or someone you love is facing such a life-threatening illness, then you may be asking not only the practical questions – “How will I find the support, comfort, strength and care I need to get through this?” but the existential questions – “Why is this happening? Why now? And what choices lie ahead?”
Addressing both sets of questions is at the heart of an honest, spiritual approach to illness. Being honest about serious illness begins with admitting that the ultimate causes of disease can not be fully explained, well-intentioned prayer can not save everyone, and medical technology has its limits. But what you do have power over is the way in which you can respond to serious illness. Your response can lessen your pain and suffering, enhance the quality of your life, and in many cases actually extend life. A genuinely spiritual response to disease can turn a situation of deterioration and despair into an opportunity for finding purpose, evoking courage, fostering strength and promoting healing.
For centuries, Jews have developed a worldwide reputation for our ability to persevere through countless trials, and to survive the most brutal of regimes. In this way, Jews have been forced to make meaning out of suffering. That said, though, we have no corner on the survival market, nor a magic formula to bring to a time of crisis. In fact, Jews have drawn on strength from many sources – from the wisdom contained in spiritual practices, from a deep sense of responsibility for one another, and from a covenantal connection to God.
A Jewish approach draws its power from some fundamental assumptions about life. Life is created, as the Genesis story reads, “in the image of God.” From our very first stories, we affirm that each single human life has worth and dignity beyond any use or function – it is sacred in and of itself. From a Jewish perspective, human life, even in a state of frailty, is of infinite value. As one popular Talmudic saying goes: “If you save one life it is as if you have saved the whole world.”
Even more important, though, is the sense that our lives are bound to one another – that in the connections we have to one another we experience what it means to truly live. As philosopher Martin Buber taught, we meet the sacred in the place that exists “in between” one another. A spiritual path centered on the self is only partial. In articulating a Jewish spiritual approach, we highlight our connections to each other, reflecting on the ethical teaching of the early rabbis “all the people of Israel are reliant on one another.”
There is a profound integration in a Jewish spiritual approach, one best articulated by the 19th century sage Rabbi Nachman of Bratslav when he said:
A person reaches in three directions: Inward, to oneself, up to God, and out to others. The miracle of life is that in truly reaching in any one direction, one embraces all three.
This book is based, in part, on Rabbi Nachman’s teaching. Throughout this book, we will articulate the three directions that he spoke of: Reaching in, reaching up, and reaching out.
Reaching in is…
Being emotionally and psychologically honest about how you respond to illness
Reflecting on your past experiences with illness and loss
Fostering an openness that allows for others to better care for you
Finding the right words to match your inner experience
Facing fears of death
Reaching up is…
Searching for the meaning and purpose of your life
Opening yourself up to spiritual possibilities
Accepting that there are forces much bigger than those that you can control
Overcoming anger and regret
Expressing gratitude for the gift of life
Reaching out is…
Speaking to others about your illness
Sharing your fears and hopes
Expressing love and thankfulness
Communicating your wishes for the future
Reaching in, up, or out is no easy task. It would probably be easier to deny that disease causes change. But as difficult as it is to be honest about your fears of the future, it is only by articulating those fears that a vision for the time ahead will emerge. This book will take you step by step through the many changes that you may have to face. We’ll begin this process with a story.
The Two Scrolls
A traveler walks down a path holding a scroll of paper in each hand. Every few minutes, the traveler stops along the way and unrolls one of the scrolls.
“The whole world was created for me,” reads the first scroll.
After reading this message, the traveler walks with pride, taking long strides on the journey, enjoying each step, paying little attention to the world as it passes by.
After a while the traveler stops and unrolls the scroll in the other hand.
“I am from dust and will return to dust,” it reads.
Suddenly the traveler begins to shuffle along the road in a state of despair, head hanging to the ground, despondent until the next time that the scroll in the other hand is read.
If you or someone that you love is faced with life-threatening illness, than the parable of the scrolls may seem like a personal commentary. Finding out that a disease is not curable can be a lot like opening up the scroll on which is written “and [you] will return to dust.”
But it can also be a lot like reading the scroll, “The whole world was created for me.” A disturbing diagnosis may prompt you to search out the best doctors, become more deeply attuned to your body, alter the ways you live, and become an advocate for your own survival. Many people are able to use a diagnosis as an impetus to profound emotional and spiritual change in which long held feelings of entitlement, mastery, and denial are superseded by a sense of empathy, love, and honesty. Ironically, that which weakens your body can, in some ways, strengthen your spirit and determination to live. Ultimately, the desire to return life to some semblance of normalcy is a powerful force.
The reality, though, is that there are times when you read both scrolls at the same moment. Reading both scrolls is to understand that our lives are caught between somewhat paradoxical truths — it is true that each life is unique and priceless, and each moment of infinite value, but it is also true that each life must end. The tension embodied in the scrolls allows us to become aware of the precious gift of life.
What is Palliative Care?
Palliative care, which tries to be honest about those two truths, actually derives its name from the French word for illusion. Originally it was used in the context of medical practices that allowed people with physical limitations to appear as if they were not hampered by their conditions. These days, a wig used after chemotherapy, for example, is considered a palliative care item. But beyond the illusion of palliation, there is a serious need that such practices meet – the need to respond to the ways disease or treatment has altered the daily life of the patient.
Part of the role of palliative care is to find the right balance between cure and care. Cure, understood as either eradicating disease or keeping it at bay, is qualitatively different from care, which addresses the impacts that disease may have physiologically, psychologically, and spiritually.
Faced with illness, an emotional and philosophical paradox emerges. In one hand rests the desire to live – which includes the courage to undergo treatment, the drive to control the chaos of illness, the strength to persevere, and the spirit that lovingly allows others to give care. In the other hand is the acceptance that death is a natural process – the knowledge that however great our desire to live, we must all come to terms with the end, take steps to ease our pain on the way and make peace accordingly.
Palliative care is about embracing that paradox. It is not about giving up hope, or letting go of the desire to cure, but about focusing on the quality of life when life is compromised by incurable illness. Palliative care affirms that just as we aggressively treat disease when we know that there is a possible cure, we must aggressively treat the pain and symptoms that burden those with prolonged illness.
Why a Jewish Book on Palliative Care?
“We expect more from hospital staff.”
“We hate waiting.”
“We want second opinions.”
“We are not afraid of complaining.”
“We want to speak directly with the top people.”
“We want the absolute best treatment available.”
While this list certainly can’t characterize all Jews who seek medical care– and it certainly applies to many people who are not Jewish, it does get at an underlying truth about contemporary Jewish attitudes towards health care. Jews have been notably active in the cause of advancing medical research as both doctors and supporters. While there are some Jews who avoid doctors altogether, most want to utilize the best medical science has to offer to fight illness. Perhaps this joke captures it best:
“Doctor, you must tell me, will anything help me?” asked a sick woman, advanced in her years.
“I’m sorry, ” the young doctor replied,” nothing I can do for you can make you any younger.”
The woman stood with a shocked look upon her face.
“Younger? That’s not my problem – I want to get older!”
Even when the average life span was forty years, Jews said: “May you live ‘til 120!” That passion for life has led Jews to develop different approaches not only to treatment, but to healing, to pain, and to dying.
How Jewish Resources Can Help You to Face Serious Illness
Over generations, Jews faced with serious illness have asked many of the questions that you may be asking today:
“What does this sickness mean to me?”
“What is the right way to tell others about what I am going through?”
“How much pain is too much?”
“What am I living for?”
“Where do I turn for help?”
“What is dying like?”
“What happens after I die?”
“Who will be with me through all this?”
In the answers to these questions that we have inherited over the generations, we find a Jewish approach to serious illness which does not deny the reality of the disease, paper over the suffering, or expect “presto you’re healed!” miracles. It is one that acknowledges that living with disease or debilitation is a profound challenge, which requires courage, sensitivity and reflection.
In this spirit, generations have turned to the Psalms – many of which are written from a place of broken-heartedness. Three thousand years before the birth of the blues, David sung of woe, loss, love, and despair, as in the 77th Psalm, where he cried:
“I moan, I try to speak and my soul feels suffocated.”
Or in the 16th Psalm where he wrote:
“As a woman whose labor pains turn to sweet joy, I must see my fate as beautiful…even though my nights feel imprisoned.”
David’s words are a tremendous Jewish resource because they directly convey the “reaching in” the connection to the personal, emotional landscape of suffering. Other Jewish texts speak of the ‘reaching out’ – the relationships that develop among people in the journey of illness. A Talmudic discussion illuminates this idea:
Rabbi Huna taught that one who visits the sick lessens one sixtieth of the pain. But other scholars challenged him, saying:
“If that is true, then why not send sixty people to visit a patient?”
“Sixty people? You have misunderstood me. It is not the number of people that lessen the pain – it is the visit itself! On each visit a sixtieth will be lessened, and this will give relief to the pain. “
People who come together when illness strikes are the best source of healing we know of: friends, family, medical care professionals, even strangers. This point can not be over-emphasized. In a culture that thrives on self-autonomy and personal choice, there is a tendency to be myopic about the role of relationships in healing. But even if you are exceptionally brave and independent, you should not be expected to face a life-altering illness alone.
In addition to the psychological and spiritual resources in Jewish sources, the Jewish healing tradition emphasizes the role that medicine plays in the healing process.
Take, for example, this clever parable on healing from the Talmud:
Two esteemed scholars, Rabbi Ishmael and Rabbi Akiba were once walking in Jerusalem. A sick person came to them and asked for a remedy. A man nearby, who overheard the conversation, challenged the Rabbis.
“God has sent sickness, and yet you are teaching this man how to be cured! Are you not working against God’s will?”
The Rabbis answered his question with a question. “What kind of work do you do?” they asked. “I am a wine‑grower,” the man replied. “God created wild vines and you cut off the fruit?” the rabbis asked him.
“But that is the only way to produce more grapes!” the man answered back.
“That is how it is with a sick person,” the Rabbis explained. “One must take care of the body to enjoy life. The drugs we recommend are like the fertilizer which you use to strengthen the soil if it becomes weak.”
(Midrash Terumah, chapter 2)
In this story, drugs are not seen as against God’s will – in fact, taking the right drugs is exactly what the Creator intended. The early rabbis understood creation as somewhat incomplete, and they had a belief that nature requires human action to complete it.
While we can learn from illness and facing our mortality, we can not fully explain why we get sick or why we die. But that does not stop us from asking the questions that illness provokes. What is life all about? What is God’s role in it? What endures? What gives us hope? Embracing Life and Facing Death addresses these soul-searching questions, too. It does so with the texts, stories, prayers, jokes, and rituals you will find in the pages before you.