This is going to be a difficult sermon for some of us to listen to. But it is an important one for all of us to hear. And today, Yom Kippur, more than any other day, is the time for us to hear it.
On this day we face our own mortality, and admit to ourselves that so much of our destiny is out of our control. Any of us could die tomorrow. We could be hit by a bus or diagnosed with cancer. We owe it to ourselves, and to our loved ones, to begin a serious conversation about our own deaths. Let this be our resolution for the new year.
Our Jewish tradition is totally unequipped to answer questions about end of life issues in the modern era. The prayer that I have been spending a lot of time with these High Holidays, B’rosh Hashanah Yikateivun, lists the various decrees that are at God’s disposal – who by fire, who by water, who by sword, who by beast, hunger, thirst, earthquake and plague.
Notice something common to all of these deaths. They are all sudden. There is nothing in this medieval prayer about Congestive Heart Failure, breast cancer, kidney disease, or Alzheimer’s.
While the language of the mahzor suggests that God has decreed our fates for the coming year and there is little we can do about it, the truth is quite the opposite. We have an unprecedented ability to extend life, in some cases indefinitely. We do not yet have the religious language to address all of the new challenges this presents.
This is not unique to Judaism. Until the onset of modern medicine, most human death came suddenly. People died from things like a kitchen injury that got infected, or the flu.
For the last one hundred years, though, humanity is increasingly gaining the ability to prolong dying. The quick progression of medicine has taken us completely off guard. We are no longer prepared to confront our own mortality under these circumstances.
In 1900, the average life expectancy in the United Staes was under fifty years old. By the 1930’s it had risen to over sixty. As of 2012, it was nearly seventy nine years old.
One hundred years ago, most people died in their own homes. Nowadays, about a quarter of us die at home. The rest of us die in hospitals, nursing homes, and other managed care facilities.
And that means that we, our loved ones, and the medical establishment, are faced with decisions that no previous generations ever had to consider.
You may have experience with this. Some of you have had to make decisions about whether to continue treatment for a person you love. Perhaps you felt confident that the decision you made was perfectly in line with the decision that your loved one would have made. Or perhaps there was doubt. You were not one hundred percent sure. Maybe there was disagreement between siblings. Perhaps there is still guilt and uncertainty about the decisions that were made, or about things that were said. These scenarios are unfortunately all too common.
My grandmother, Baba Fania, may her memory be a blessing, passed away six years ago. She was eighty four years old, and was struggling with Congestive Heart Failure. Baba Fania lived in her own home until almost the end. A few weeks before she passed away, she moved to a rehab center. There were trips back and forth from the hospital.
She continued to decline, and I, along with my parents and brother flew down to Southern California to join my aunts and their families.
When I arrived, Baba Fania was in the ICU, the Intensive Care Unit. Her heart rate had dropped dangerously low, and so the medical team had put her on an intravenous medication to bring the rate back up. It was not a permanent solution. They tried to wean her off the IV, and when her heart rate dropped again, the treatment was restarted.
Then, the Resident who was running the ICU initiated a conversation with us that does not occur frequently enough. In his own words, he said “ICU’s have a tendency to take over.” A treatment is started, and it leads to one after another and another progressively more invasive intervention.
Our medical system is very good at finding alternative treatments to fight illness. If the first round does not work, then there are second and third rounds to follow. But our system does not do a good job of determining when to stop.
Doctors, after all, are trained to treat illness. They wage war against death, the enemy. When a patient dies, the battle has been lost and the doctor has failed. Of course, the deck is stacked, and death always wins in the end. Nevertheless, we ignore what is inevitable because it is too difficult for us. That is why the conversation about whether a treatment should be undertaken in the first place often does not happen.
We were lucky. In our case, it did. My aunts and father discussed what their mother’s wishes would have been in this situation, since she was unable to answer for herself. They agreed that my grandmother would not have wanted to initiate a series of interventions which had little chance of extending her life and had every chance of increasing her suffering
The decision was made to wean her off the heart medicine one final time. If she could not support herself, then no further interventions would take place and my grandmother would die.
And that is what happened. The medication was withdrawn and she was transferred out of the ICU into a regular hospital room. She died there a day and a half later. I was in the room at the time with my aunt and uncle.
We were really lucky. Lucky that my father and his sisters were in agreement about what to do. Lucky that my grandmother had filled out a health care directive, and that everyone was aware of it. Most of all, lucky that the physician running the ICU that day took the time to have a big picture conversation with us rather than speaking about the next treatment options – because it very easily could have gone in that direction.
As a I look back from a six year vantage point, I wonder if it might have been better if my Baba Fania had never gone to the hospital in the first place. She could have been enrolled in a hospice program that would have focused on quality at the end of her life. She could have stayed in the home that she had lived in for forty six years. She could have died in her own bed, surrounded by her children, grandchildren, and the hundreds of photographs that lined her walls. But the discussions that would have led to that decision never took place.
It is nobody’s fault. Most of us do not know how to have that conversation. It is not part of our culture to talk openly about our own mortality.
The dialogue that needs to happen rarely does.
The truth is, most of us know virtually nothing about dying. We do not understand how the health care industry functions – and this includes the people who work in it. We know little about the various treatments and their attendant risks and complications. We do not understand the choices that we are going to have to face. What we imagine it is going to be like and what it actually is going to be like are vastly different.
As someone who is married to a physician and is in the business of spiritually helping people with issues relating to mortality, I probably have more exposure to these kinds of conversations than most people. I first completed my Advance Health Care Directive when I was twenty five years old. Dana, fresh out of medical school and entering her residency, came home and insisted that we fill them out. Death is a fairly common topic of conversation in our home, including with our nine and eleven year old children.
And yet, I will be the first to admit that I know practically nothing. I do not know what it is like to receive chemotherapy, unlike some people in this room. I do not know what it is like to have the first round of treatment fail, and to have to turn to second or third tier drugs. I do not know what it is like to be on a ventilator, or in a medically induced coma. I have never had to go into a procedure knowing that I might not wake up from it. So how can I possibly be expected to make a decision now about what I would want done if and when any of those scenarios become real?
So what can we do?
Many of us have filled out an Advance Health Care Directive. We have designated a Proxy, a person who will make decisions for us if we become incapacitated. We may even have discussed it with our physician. We have taken responsibility. I am sad to say that the form is close to worthless.
The California Advance Health Care Directive asks two essential questions. The first asks do you or do you not want your life to be prolonged if you have an incurable and irreversible condition that will result in death in the near future, or if you are unlikely to regain consciousness, or if the likely risks and burdens of treatment would outweigh the expected benefits?
The second question asks whether or not you want pain relief, even if it may hasten your death.
That’s it. In the event of an emergency, two questions cannot possibly cover the range of scenarios that could arise. And that is assuming that the directive you filled out made its way into your medical file, and that somebody actually bothered to look at it. And, that the family members in the room with the physician are doing their best to decide what you would want rather than what they want.
No. Those are not the right questions.
What is needed is not so much the answers to a list of medical scenarios, but rather a conversation about what is important to us. Begin a conversation with the people in your life who are going to have to be with you at the end of it.
I once attended a class with a Geriatrician who had a lot of experience working with patients and families around end-of-life issues. He described the relationship with the health care proxy, the person entrusted to make decisions for another, as a sacred “covenant.”
Nobody can account for all of the possible medical scenarios which he or she might be faced – so don’t bother to try. What is more important is that the person entrusted with making decisions for you knows your values.
What matters to you? What are you living for? What in your life, if you lost it, would make you feel that living was not worth it any more? What do you want your final weeks and days to be like? Where do you want to die?
When the person you have trusted knows this about you, then if he or she ever has to make a decision, it will be your decision.
In a 2010 New Yorker article called “Letting Go,” Dr. Atul Gawande tells the story of a colleague. Dr. Susan Block is a palliative-care specialist who has had thousands of difficult conversations with patients and family members, and is a nationally recognized trainer of doctors and other professionals entrusted with managing end-of-life issues.
Some years ago, her work became personal. Dr. Block’s seventy-four-year-old father, a retired psychologist from UC Berkeley, was admitted to a hospital in San Francisco with a mass growing in his spinal cord. The neurosurgeon said that the procedure to remove the mass carried a twenty-per-cent chance of leaving him paralyzed from the neck down. Without the operation, it was a one hundred-percent certainty.
The evening before surgery, Dr. Block and her father chatted about friends and family, trying to keep their minds off what was to come. Then she left for the night. Halfway across the Bay Bridge, Dr. Block realized, “Oh, my God, I don’t know what he really wants.” So she turned the car around and went back to her father’s bedside.
Even for her, an expert in end-of-life discussions, the conversation “was really uncomfortable.” “I just felt awful having the conversation with my dad.” She told him, “I need to understand how much you’re willing to go through to have a shot at being alive and what level of being alive is tolerable to you.”
It was an agonizing conversation for her, but he said something that totally took her by surprise —”Well, if I’m 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.”
“I would never have expected him to say that,” Dr. Block said. “I mean, he’s a professor emeritus. He’s never watched a football game in my conscious memory. The whole picture—it wasn’t the guy I thought I knew.”
After the surgery, he developed bleeding in his spinal cord. The surgeons told Dr. Block that, to save his life, they would need to go back in. But he had already become nearly quadriplegic and would remain severely disabled for many months and possibly forever. What did she want to do?
She recalls, “I had three minutes to make this decision, and, I realized, he had already made the decision.” She asked the surgeons whether, if her father survived, he would still be able to eat chocolate ice cream and watch football on TV. “Yes,” they said, and so she gave the go-ahead for another operation.
“If I had not had that conversation with him,” she later said, “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?” Or she might have gone ahead and sent him to surgery, only to find—as occurred—that he survived only to go through what proved to be a year of “very horrible rehab” and disability. “I would have felt so guilty that I condemned him to that,” she said. “But there was no decision for me to make.” He had decided.
After a difficult recovery, Dr. Block’s lived for ten more years. When complications developed that made it impossible for him to eat, he decided to stop fighting. He went home on hospice care, received treatment to make him comfortable, and died with his daughter at his side.
Talking about our own mortality is one of the most difficult conversations we can have. It seems so scary and daunting. Where do we begin? Let me offer a few conversation starters:
Describe a time when you were part of a difficult medical decision, either for yourself or for someone else.
Have you ever been present when another person died? Talk about what that was like.
Then you can begin to talk about your own death.
Complete the following sentence: What matters most to me at the end of my life is…
Is there something that, if you could no longer do it, would make you not want to continue medical treatment? The equivalent of eating ice cream and watching football for Dr. Block’s father. One Rabbi told his family that if he can no longer tell stories to children, he does not want to continue living. What is it that makes your life worth living?
Where do you want to spend your final days? How important is that to you?
The answers to these questions are different for all of us. One person may want every possible treatment, regardless of the impact on his quality of life. Another may feel that she would not want to continue if she could not feed herself.
The answers to these questions are likely to change. This means that the subject of our mortality should not be a one-time conversation. It is a topic that we should introduce now, when we are healthy and at full capacity.
I have had conversations about death with some of you, and I am honored to continue to help you work through these issues. But I am not the most important person to speak with. This conversation should be had with all of the people who are likely to be with us when our health declines. This could mean spouses, children, siblings, parents, and close friends.
One of the greatest gifts we can give to the most important people in our lives is a conversation about our death. We can save them from having to make an agonizing decision. We can save them from years of guilt. And we can prevent the kind of family squabbling that occurs when children, siblings, and spouses project their own fears on their loved one because they do not actually know what their loved one wants.
You owe it to yourself, and you owe it to them, to talk about your death.
Our Jewish tradition focuses on living in the present. We do not have any certainty about what awaits us in the world to come, and it is certain that death waits for us in this world. So we focus on our time here in the world of the living. That time is made immensely more precious when we can face our mortality openly and honestly with the people we care about.
Today, or sometime in the next couple of weeks, begin the conversation with your loved ones. Let’s talk about death so that we can live.