The Physician's Role in End of Life Conversations

THE PHYSICIAN'S ROLE IN END OF LIFE CONVERSATIONS

Her gravestone reads "Born December 3, 1963. Departed This Earth February 25, 1990. At Peace March 31, 2005. To whom do I refer, and why?

Welcome to the Clinician's Roundtable. I am I am Dr. Bill Rutenberg, your host, and with me today is Rabbi Irwin Kula. Rabbi Kula is the President of CLAL, The National Jewish Center for Learning and Leadership, a leadership training institute, think tank and resource center located in New York City. Known as both a provocative religious leader and a respected spiritual iconoclast, Rabbi Kula was ranked No. 8 in Newsweek's list of “Top 50 Rabbis in America.” He is the author of Yearnings: Embracing the Sacred Messiness of Life and has appeared on the Today Show and on Oprah.

DR. BILL RUTENBERG:

Good day, Rabbi Kula.

RABBI IRWIN KULA:

Hi.

DR. BILL RUTENBERG:

Thanks so much for joining us today at the Clinician's Roundtable.

RABBI IRWIN KULA:

Great to be here.

DR. BILL RUTENBERG:

Today, we are discussing issues and care at the end of life. The answer to the person we are talking about obviously was Terri Schiavo and the ordeals she went through and how many people got involved. Federal legislatures, state federal courts, US Supreme Court, the Governor of Florida, the President of the United States, US Supreme Court and even the Pope. With all these high powered people involved, what's the doctor do to best serve and protect his or her patient to the end?

RABBI IRWIN KULA:

Oh, wow! As a human being, I guess what I would want from my doctor, I can answer to the patient. What I really want from my doctor. What I have watched the good doctors do for the people, who it might wife have passed away and who have been ill, especially at the end, is what I want from doctors is honesty and compassion. Now, honesty means, you know the context and you tell the truth in the context in a way that people can hear, so all I can tell you is in general. Then as each particular case has its own dynamic because some people hear truth in different ways and some people need different words to be actually accessed what it is you are saying to them and different members of families need different ways of being spoken to, so it's really, really hard. There needs to be humility at the end. It's hard because in some respects we are taught society-wise, the death as a failure.

DR. BILL RUTENBERG:

Let's use Mrs. Schiavo as a stepping off point. A patient has reached the point where there is no return. The doctor knows that objectively medically, if you were counseling the family about withdrawal of care, what would you say to them as a Rabbi?

RABBI IRWIN KULA:

There I say, look, very honestly this is very sad, this is where we are right now according to the medical profession and it really is in the hospital that we are in, it's really unanimous. There is, you know, ethics departments here and there is a variety of different kinds of health professionals and health practitioners and this doctor, who has been you know part of this case in this person's life for, however, long that this person is not going to recover. Now, we have a decision to make. The doctor has given us all the information he can give us because now it's about the nature of how we think about life and death and the relationship that you have with this person, but what you need to know is there is nothing more that can be done from the medical standpoint.

DR. BILL RUTENBERG:

But now there is a conflict. You know the parents say no, the husband says yes. Can you read between the gaps? We have talked about forgiveness in other sessions and how do you reach a consensus?

RABBI IRWIN KULA:

So I don’t think this is a doctor's issue now. This I think now becomes a psychological, spiritual question.

DR. BILL RUTENBERG:

Well, doctors need to know about that, so please, let's go that way.

RABBI IRWIN KULA:

I would say that first many of these disagreements can be alleviated by having these kinds of conversations before one is in this position and we need to be able to have these conversations, and I know that in my family I know what my parents want, and by the way they want different things, and even though one of them wants not only do not resuscitate, but like if you can do it even before it gets to DNR like nothing even heroic before it's heroic and the other one, my mother has said to me I want you to do every last thing. Now it turns out I actually I am more in tune with my father's take, but I will honor my mother's wishes. Now, I have five younger brothers. Each of my brothers has had this conversation with my parents and six brothers, obviously we have different feelings, but our goal is to honor the relationship with our parents and we have to thrash through with them. Now if you do this before, and this is doable before, especially now a days when the truth is because of all the medical advances for good and for bad, say people can hang around a lot longer and people are dying for a longer time and dying conscious and dying much more aware into that last bit. We have to be able to encourage those conversation; that's the job for every rabbi, every priest, every minister in this country has to have these context and environment for this conversation, and doctors, from their end, need to encourage patients to be asking this question. You need to have this conversation with your children and anyone who is going to be involved in the decision making. So that step 1 how much can be done prior to and that's a cultural shift that only happens because leadership begins to do it and talk about it.

DR. BILL RUTENBERG:

So doctors really need to basically speak with their elder patients. They need to speak with people, who have been diagnosed with a serious illness and get that conversation going between the family members and the patients so that patient's wish is honored.

RABBI IRWIN KULA:

Correct, and they have to volunteer in their churches and synagogues and mosques and community centers, they have to say, this year I am going to give at least one night, I am calling up some institution that I am committed to where values are kind of the basic resource of a place, and let's say, I called up my rabbi; I am a doctor, I called up my rabbi, I called up my priests. You know what, I would like to make an offer, you pick a night that we can do it and I want to offer in our church, in our synagogue, in our mosque that the limits of the end of life for anybody who wants to have a conversation about the real things you need to do, I am doing it as a doctor and as a member of this community; not only as a doctor, but as a member of this community. So that's how you proactively begin to change the cultures so we can have the conversations. We are fighting against a lot of stuff, we are fighting against an entire culture that sees death as an enemy as opposed to death as one amongst the most significant processes of living.

DR. BILL RUTENBERG::

I would like to interrupt for just a moment to welcome those who have just joined us at the Clinician's Roundtable on ReachMD, The Channel for Medical Professionals. I am Dr. Bill Rutenberg and I am speaking with Rabbi Irwin Kula. We are discussing issues at the end of life.

Can you recall perhaps the single most poignant moment for you in helping a <_____> face death and how you help them.

RABBI IRWIN KULA:

I am going to try this. My father-in-law died six weeks ago, so he wasn’t a <_____>, he was my father-in-law and I knew him for 31 years, so that's like a good portion of my life, I turned 50 last week, and he had pancreatic cancer, so not the nicest way to die.

DR. BILL RUTENBERG:

No.

RABBI IRWIN KULA:

And the last eight weeks really, they weren’t so good, and they weren’t so much fun. You know old school, he didn’t talk about his feelings, he is not a therapeutic kind of character, not spiritual that way, but real you know kind of soul for the earth character, and the biggest thing I learned was actually be present and do this. Instead of asking someone who you love, now we are talking about how do you feel, it's how do you feel about dying and it's very scary to say, but actually not scary to the person at all, you know why?

DR. BILL RUTENBERG:

No.

RABBI IRWIN KULA:

They know, they are not stupid; guy went from 200 pounds to 98 pounds, he was a 101 pounds in the bed, he knew; he was in the hospice, he knew, and asking that question how does it feel to be dying and to have the real conversation, which is always pushing to confront the real fact as opposed to beating around the bush.

DR. BILL RUTENBERG:

What kind of answers have you gotten to that question?

RABBI IRWIN KULA:

Oh my God, one of the things that my father-in-law said about 3 weeks before he died, I said to him actually are you scared of dying, are you having any dreams? They are different than the dreams you had before? Are you having, really you have to pinpoint, so this is an amazing story. He says to me you know I really wasn’t scared at all because you know I understand I am not scared, that's not the way I am, but last night, I got really scared. This is two weeks before he died. So I said, dad like what are you scared about? He says I was like drifting off and I did know the difference between up and down. I said oh you mean you were confused. No, no, no, no… It was like there was no up and down, it was just like one. Now, he is not a religious person, so he didn’t know <_____>, it was like just it was one, and what happened. He said oh I got scared, oh my God I am dead, and I said what did you do? I said why did you get scared? He said I got scared because I told Gabriello, that's my daughter, his granddaughter that she didn’t have to come home to say goodbye this week, she can come home next week when she is supposed to come home and I am going to be alive and she will say goodbye to me then, and now I am crying already, he is not crying because it's not about him crying, it's about us crying, and I said to him what did you do? He said I came back. I said what do you mean you came back, how did you come back? Step by step by step.

DR. BILL RUTENBERG:

Wow.

RABBI IRWIN KULA:

Now, I can tell you 15 stories like that of last six weeks because when you are willing, my experience is that it's really about the patient being reluctant to share, it's usually about how we are reluctant to receive. For good reason, it's scary.

DR. BILL RUTENBERG:

Yeah, now that's why I wanted to talk about this.

RABBI IRWIN KULA:

But it's always going to where it's uncomfortable for you in a gentle way. It's not going to be as uncomfortable for the patient I have discovered as we fear and then you have these kinds of moments actually. I will give you another moment. It was a Sunday, it was his 80th birthday, look towards the 80th birthday, a bunch of us came and then the hospice even said he is going to die in the next, you could hear him as a whisper kind of thing, he is probably going to go into a coma in the next 24 hours and then he is probably going to die in the next 48 hours as much as people can understand that. It turns out two days later he is still alive so I go visit him. I go up and he could barely speak. So I am in bed and he says to me "Irwin, you really don’t know when you are going to die." Now he says this very whispering, but you really don’t know when you are going to die and I start to laugh a little bit because it was like what do you mean you are going to die, you know. He said "when I went to sleep Sunday it was one of the greatest days of my life, and I thought okay now you are going to die, it's okay, and here I am talking to you." So I asked him, now here's what I mean by asking him real, not asking it fake. Dad, was there any benefit to being alive the last two days?

DR. BILL RUTENBERG:

Wow.

RABBI IRWIN KULA:

Now that's a very scary question, as we shake. Was there any benefit to being alive for the last two days because if there was I really want to know because yikes!, and if not, then we will continue going through the family and saying what are you worried about this person, how do you want to say goodbye to this person, that may be you didn’t do and need your help to die. He looks at me, he says in a whispering voice, there was one benefit for the last two days, what is it dad? Mom has been telling me hundreds and hundreds and hundreds of time that she loves me.

DR. BILL RUTENBERG:

Oh my God.

RABBI IRWIN KULA:

Now, that's what you get if you are willing to ask the question that's scary.

DR. BILL RUTENBERG:

And there is the note to end on. I would like to thank Rabbi Irwin Kula, who has been our guest and we've been discussing issues at the end of life.

I am Dr. Bill Rutenberg. We welcome your comments and questions. Please visit us at www.reachmd.com, to explore our on-demand and podcast features, which gives you access to our entire program library. I wish you a good day and good health.