The Sanctity of Life: A Jewish Approach to End of Life Challenges

These notes are unofficial and unedited. Any and all mistakes are mine.

This conference featured presentations from Rabbi Dr. Edward Reichman, Dr. Beth Popp, Dr. Tia Powell, Rabbi Dr. Moshe Tendler, Rabbi Kenneth Brander, Dr. Alexander Okun, Rabbi Simcha Scholar, Rabbi Mordechai Willig and a host of breakout session speakers. I attended Rabbi Dr. Howard Apfel's session.

The Sanctity of Life : A Jewish Approach to End of Life Challenges

Introduction-

Avi Amsalem & Rifka Wieder: Breshut haRoshei Yeshiva, Rabbis, and Esteemed Guests- my name is Avi Amsalem and this is my copresident Rifka Wieder and we are proud to welcome you to our 3rd annual MedEthics conference. The practical advances in modern medicine mean that the many halakhic/ ethical decisions we are face with become increasingly difficult- this past week’s Torah portion informs us of how seriously we are to consider the dignity of our fellow human beings in times of crisis and death, for even a criminal is accorded the respect of one created in the image of God. Rashi explains the Torah’s injunction against publicly displaying the dead criminal’s body demonstrates this and the value of life. Accordingly this respect knows no limits in reaching every strata of our society. With the charge of “yrapo yerapei” and you shall surely heal, we are given the privilege and responsibility to treat this disesase. Scienitfic goal + Torah= healing.

This is the goal of the MedEthics society. Medical ethics and intersection with halakha not only in YU community but in Jewish community as well. All of today’s presentations will be recorded and available on our website as well- need for a conferece of this nature is obvious. We hope you will find today’s program practical and helpful. Today’s speakers, many of whom are YU or Einstein alumni- special thank you. We encourage everyone to interact and pose questions to our speakers- we hope to create an environment of comfort and intimacy that will help everyone learn more. We would like to acknowledge the Center for the Jewish Future. We would like to especially thank the staff of the CJF. Especially heartfelt thank you to Aliza Berenholz. We would like to thank Rabbi Kenneth Brander, Dean of the CJF. We would also like to express our deepest gratitude to Rabbi Dr. Edward Reichman who is both mentor and friend. Last, but certainly not least, we would like to thank the officers who are members and volunteers in this society. A special thanks to our executive team. Also thank you to student moderators of today’s breakout sessions. Please shut off your cell phones now. It is now a great honor to call upon Rabbi Dr. Edward Reichman for words of introduction to our first session.

Rabbi Dr. Edward Reichman: Good morning everybody and welcome to what I know will be an extraordinary and provocative session- it is my absolute honor and privilege, pleasure, zechus, to participate in the third annual conference of medical halakha sponsored by the CJF, Yeshiva University and Society of Medical Ethics. You know the halakhic significance of the number 3, a chazaka; once we have the third it will require us to continue with many conferences in the future. I began two years ago with a story and last year echoed it and promised I would repeat it, look forward to repeating it. Story of a scientist who approached God and said we have so many developments in so many medical issues that we don’t need you anymore; we can do just about anything you can do; in fact, we can create man. God said to the scientist: Is that so? How do you do such a thing? Scientist says we take some dirt from the ground, put in some enzymes with a pipette- and God says why don’t you show me. Scientist picks up some dirt and God says no, no, get your own dirt.

Last year we focused on fertility and the beginning of life- now we skip to the other end of the spectrum- scientists believe they can control when man dies as well. Our objective today is to discuss the halakhic issues of this extremely important topic- we’ll read in U’Nessane Tokef who will live and who will die- welcome to today’s exciting conference where we will address some of these issues, as there is no way to address all of these issues. Extraordinary presenters- I would like to apologize on behalf of Rabbi Dr. Richard Weiss who will not be able to be here this morning because in fact he had a practical issue of end of life issues as he is Rabbi of Young Israel in Hillcrest. He sends his apologies and says this is halakha l’maaseh issues of End of Life.

Would like to introduce our extraordinary panel this morning- we have three speakers. One of clinical palliative medicine, Dr. Pop. Then ethics, Dr. Powell. And then third representative who will represent halakhic issues- Rabbi Dr. Moshe Tendler.

Dr. Beth Popp was the first director of palliative care in the New York Harbor Healthcare System. Now director of palliative care at Maimonides. She will bring to the podium the expertise of clinical palliative medicine. Dr. Tia Powell is the newly appointed director of Montifeure-Einstein ethics. She has trained at some of our country’s best institutions; we look forward not only to her presentation today but to her joining the YU Family. Rabbi Dr. Tendler is a man who needs no introduction to this audience- want to acknowledge a few people in the audience: Dr. Edward Burns, Associate Dean of Albert Einstein College of Medicine, Dr. Adrianne Asch who is here with us as head of Dept. of Ethics at YU, Dr. Robert Shulman, who is a spearhead of one of the other great forces of Medical Ethics in United States for past 50+ years. Rabbi Charles Shiur who has an active role in training chaplains who deal with this on an end of life issue and Dr. ______ who is running a palliative care center, and also the head of HODS (Halakhic Organ Donor Society.)

Look forward to an extraordinary and provocative program.

Dr. Beth Popp: Bershus haRoshei Yeshiva and other distinguished panelists, my colleagues who will be speaking throughout the day. Good morning, thank you very much for inviting me to participate in this conference- looking forward to not only being a participating this morning but also to sit in the audience for the rest of the day. What I was asked to do as a clinician (obviously not a Rabbi or someone with theoretical background of ethics) how I would take these ethical issues and implement them at the patient bedside.

APPLYING THEORY AT THE BEDSIDE

Abstract concepts applied to real people
- Decisions not made in a vacuum
- Decisions and their implications come as a package
- In medicine we often have to make decisions without all the information we’d like to have

CULTURAL DIVERSITY?

- Medical Ethics based on four principles
- Benficience, Non-malefiance, Autonomy, Justice
- Quality of Life consideration

Heavily Influenced by Catholic Ethics
-Ordinary and extraordinary means
Benefits and burdens
Principle of double effect

Social Justice and Economic Issues
Futility, Quality of Life Consideration

Traditions outside Western Society as well-

ISSUES IN THE MEDIA

Public Policy
-Health care financing
Health care access
Health insurance costs

Legal Issues
-Assisted Suicide (Kevorkian, Oregan, Vazo V, Quilll, Washington v. Glucksberg)
Organ Donation
Surrogate Decision makers

Societal Values
Disability Rights

Often portrayed as being important key cases about *what* is decided, although mostly they are about *who decides*- who should be empowered to make important decisions about end of life care. Oftentimes the information we get is distorted because it is much more interesting to make it an issue of what is decided, rather than who has the legal rights and the ability to make these key decisions.

Quinlan, NJ- Right of surrogate
Cruzan- need for clear and convincing evidence of the patients wishes to allow surrogates to discontinue artificial nutrition and hydration
Shiavo- parents opposed husband
Golubchuk- Canadian case

Number of issues specifically by Orthodox patients.

Common caregiver beliefs about Orthodox patients families:

- Can’t use the word “cancer” with them
- Are in denial about terminal prognosis
- Won’t discuss or consent to DNR orders
- Insist on use of ventilators and feeding tubes in all cases
- Won’t appoint a health care proxy
- Rely more on their rabbis than their doctors to make decisions about their care
- Insist on futile care
- Consume unreasonable amounts of health care resources

“Sound Bites” – Halacha and End of Life Care

- Every moment of life is invaluable
- All efforts to prolong life, however briefly, must be utilized, because every moment of life is invaluable
- Quality of life isn’t a consideration, because every moment of life is invaluable
- Al patients must always get artificial feeding

People assume this means that every moment to prolong life, no matter what it is, is necessary because every moment of life is invaluable. This suggests quality of life is not a consideration. There’s also commonly a notion that all patients must always get artificial feeding.


A little knowledge…

-Families are often reluctant to ask rabbis questions about halakhic issues in end of life care (part of a project founded by UJA federation about this)

- perception that patients suffering is not a consideration in halakhic decisions
- fear that families or patients will be asked to endure more suffering with more aggressive treatment than they want
- guilt at making decisions without rabbinic guidance if they don’t consult a rabbi

Perceive antagonism between rabbis and physicians results in rare direct conversation

- Burden on family members conveying medical information to rabbis (tremendous additional burden to put on family members who are very emotionally involved in this)
- Effect on decisions if important information missing (might not be appropriate decision reached because a piece of information was left out)
- Effect on health care professionals not understanding decision (those who are not part of the Orthodox community or even those who are may not understand the decision/ may not have confidence that this is an appropriate decision given their religious beliefs and background because of their concern that key information may have been left out)

Making the process of implementing decisions at the bedside an optimal processs is direct communication between Rav and Doctors. We’ve been very fortunate through Maimonides to put together some educational programs with Rabbis in the communities together with doctors largely not Jewish or not religious – made a significant frame shift in the way these decisions are carried out.

EVERY MINUTE MATTERS-

Does this mean we must always do everything to add even a minute to a life?
Does the degree of current suffering matter?
Does the degree of future suffering matter?
Does the potential for increased suffering matter?
How do we assess the degree of suffering in patients who are functionally impaired?
Does the likelihood of success matter?
What are the best case and worst case scenarios?
Does the cost matter?

Patients are sometimes very difficult in assess- neurological injuries, cranial bleeds, people with Alzheimers- who can’t tell us what living in their bodies with this illness is like. These are the kinds of questions that often need to be asked because these are the implications of these kinds of decisions.

CPR

-History of CPR (developed fifty some years ago)
CPR in different patient populations
-Children in community settings (often good outcome)
-Adults without known medical problems in the community (good outcome)
-Trauma victims (seen mostly in Korean War, fairly good outcome)
-Adults with cardiac rhythm abnormalities with or without MI

All four of those patient populations are very different from the medically ill hospitalized patients.

-Medically ill hospitalized patients with un-witnessed arrest (usually a bad outcome, well over 50% of the time)
CPR and the Brain: CPCR (Keep oxygenated blood flowing to the brain rather than restarting the heart and lungs- to keep oxygenated blood flowing to the brain quickly enough so the brain doesn’t undergo significant brain damage. As we learn more and more about the outcome for CPR over the time since it was developed, does that change the way we need to think about it or does it not?)

When can we accept cessation of cardiac and respiratory function in death? When are we obligated to attempt resuscitation? (The way this question is phrased at the bedside is generally, “Do you want us to do everything we can to keep your relative alive?”)

Does the patient have a known life-limiting illness?
At what pint in the trajectory of his illness is he? (With cancer, perhaps we can tell where in the illness he is- with others, maybe not)
- How certain can we be?

Are there remaining palliative interventions that the patient is prepared to undertake?
Are the patient’s symptoms well controlled?

How likely is the patient to return to his current level of function? (There was a situation with a relatively young patient who had a malignant tumor who wanted to go on an experimental trial. This was the only treatment option left to him. If he suffered from cardiac arrest and was resuscitated, he would not be eligible to go on that experimental trial. And this was a key factor in the Rav’s decision in the end.)

Will the patient be well enough to continue treatment of the underlying disease?

Can harm come from trying? Or “what do we have to lose?”
- What is the usual course of a medically ill patient after a trial of CPR? (Most of those patients; we don’t even succeed in restarting their hearts. But for those where we succeed a very small minority of them live more than 30 days. The status of those who do survive is usually significantly different than it was before. So are they obligated to undergo that change in an effort to try to undergo their survival?)
Does the patient want to have CPR? (There are patients who want it and patients who don’t want it- sometimes whether the patient wants it is a factor among the factors considered by the Rav. Important to find it out in a way that is often nuanced; not just a question of do you want us to try everything or not.)

Would the patient want to have CPR in this situation understanding the risks and benefits? (Often these decisions are being made by surrogates, so it’s not very clear cut. We know from studies of patient decisions as they progress through a disease, like lung cancer, that patients decisions evolve as they progress through their illnesses. Situations which they might have thought were intolerable they may come to accept, and may find consistent meaning in their life. The converse, of course, can also happen. Given the situation now and the contingencies now, what do we think the patient would have decided.)

OXYGEN AND MECHANICAL VENTILATORS

Is oxygen basic care or medical intervention?
Does Oxygen include nasal camula and masks, non-invasive positive pressure ventilation, intubation and mechanical ventilation?
Does this obligate use of intubation and mechanical ventilation?
-Pain medication due to discomfort of intubation and other procedures
-Sedation to prevent fighting against ventilator
-Restraints to prevent unintentional remove of tubes, IVs, etc
-Relative immobility and risk of ulcers
-Tracheostomy if dependent on ventilator for more than 10-14 days
-Artificial feeding while intubated
-PEG tube if artificial feeding for extended period of time

Oftentimes patients do need to be sedated in order to allow the ventilator to do its job.

Situation where there was a patient who was obligated to have a tube/ be intubated because he was awake and interacting with us, but in order to have such a tube he would have to be sedated. Seemed not to make sense, continued to discuss with Rabbis; this was a factor in their decision.

DNR AND DNI ORDERS

-When does resuscitation start and end? (What if someone has sepsis and as the infection spreads the person is going to die- is giving him antibiotics resuscitation, or is it clearing an airway and chest compressions?)
-Efforts to prevent the patient suffering a cardiac arrest
-Efforts to correct the underlying cause of the cardiac arrest
-Cardiac arrest, respiratory arrest, either, both?

Can a patient who is DNR be intubated and placed on a mechanical ventilator?
-When is intubation part of a resuscitation attempt and when is it not?

Can a patient be DNI and be resuscitated?
-Intubation is an integral part of CPR

Are treatments besides CPR - ?

FEEDING AND HYDRATION

Are food and drink basic care or medical care?
Is artificial feeding and hydration basic care or medical care?
Is the patient’s condition so grave, that they will die from their illness before exhausting their nutritional reserves?
What are their nutritional needs?
Can they utilize nutrition provided?
Will artificial nutrition provide additional benefits compared to hydration?
Will artificial nutrition cause additional risks compared to hydration?
Can artificial nutrition be provided? NG or PEG? PIV, PICC, Central line, mediport?
Fluid overload and pulmonary congestion issues

Patient with severe burns will have different nutritional needs from a healthy patient. How do we make decisions about the perceived invasiveness and risk of these different ways of providing artificial nutrition? People often have a perception that TPN (artificial nutrition provided through the veins) is less invasive, but the risks of TPN are much higher than the risks of feeding through PEG or PIV tube (tube placed in the stomach itself.) Often we need to do significant education – whether with patients or Rabbanim- because unfortunately don’t always deal with Rabbanim who are very well-versed in this. And finally, when we provide artificial fluid and hydration- we are overriding normal satiety signals, and so we have to be careful that sometimes we can create new problems in terms of fluid overload and pulmonary congestion to patients whose underlying physiology is not normal because of the disease they have.

HOSPICE

A program providing an infrastructure and interdisciplinary support for seriously ill patients to be cared for in their homes.

Many hospices have broadened the treatments they will give in certain circumstances.

National organizations to improve hospices services to Jewish Patients

Important initiatives in Detroit (Rabbi Friedman) and Brooklyn (Metropolitan Jewish Health Systems and their hospice) and Bronx (Einsten-Montifeure and Jaco-Perlo Hospice, trying to open up – in Riverdale) to accommodate Orthodox patients’ religious practice and values in Hospice Programs

Because of the way hospice is funded, it often is an economic issue that precludes hospices from being able to be more broad in terms of how the funding for hospices is provided. Sometimes making sure that Orthodox patients can have this, need additional funding from private.

TAKE HOME POINTS

It’s an election year and these things are very important issues (weigh in on them)
Make sure people you care about have someone empowered to make decisions for them in an emergency (Dr. Powell is going to talk about some of the issues that affect who can make decisions)
Make sure you care about yourself! (All the cases I mentioned before besides the Golubchuk case happened to young people with no known medical problems- very important for frum community to make sure we’ve done this)
Aseh l’cha rav
Ask the rav to speak to the doctor(s) caring for the patient
Ask the doctors caring for the patient to speak to the rav

Thank you very much.

Dr. Tia Powell: Good morning. It’s a distinct pleasure and an honor to be here. I am a new member of this community, having taken up my job two weeks ago. Yet I already feel, perhaps incorrectly, at home, seeing many familiar faces already and welcoming colleagues I know and many more I hope to know better.

I’ll try to be efficient in my comments as many of you, like me, would very much rather hear Rabbi Tendler speak.

The job I took up two weeks ago is at the Montefieure-Einstein Center for Bioethics.

- Clinical Ethics Consultation
- Ethics Education
Certificate program/ Medical Students, Residents, Fellows, Faculty
-Institutional Ethics Policies
-Ethics research and scholarship
Evidence-based/ Clinically relevant/ Publicly responsible

We hope to be a Center for Ethics Scholarship- we hope to reflect the very specific mission of this institution by promoting research which is Evidence-based/ Clinically relevant/ Publicly responsible.

Overview: End of Life Care

Certainly not new to anyone here- much study
Many advances
Many gaps, inequities- much left to do
Room for improvement- many cases provided either not as good as it could be, either medically or based on trying to promote the preferences and values of the patients

ADVANCE DIRECTIVES

-Important tools developed last 35 years- all manmade tools are imperfect
-Record of Preferences for future care
-Autonomy Extenders
-Best for foreseen medical decisions
-Vast educational effort
-Fewer than 20% of patients complete

Advanced directives are what you leave behind for when you lose your capacity to make your own decision. Ordinary circumstance that a person who is facing potentially fatal illness will not be able to sit with his physician and tell him.

LIVING WILL
-Specific instructions

I find this document particularly imperfect. It attempts to articulate a specific laundry list of things a person would or would not want. Enormous problems- the problem is when young people say they would never want to live with X or Y disability; they have no idea what they are talking about. To walk in and find an 18 year old confronted with a terrible crisis and a document that says don’t do anything about that is a nightmare for all involved. So there are specific uses- if your views differ remarkably from the majority- if you have a peculiar crisis that will come to you.

Jehovah’s Witness- who will not accept blood products, like a transfusion. The more so if you are a Jehovah’s Witness who has sickle cell disease. Jehovah’s Witness as a faith is extremely common among African Americans and many have Jehovah’s Witness- so that works for you, because ordinary care is not what you want.

HEALTH CARE PROXY

-Designate Surrogate
-May also offer specific instructions
-Food and fluid- NY law differentiates
-Offers greater flexibility

This is a person who will act for you should you no longer be able to act yourself. You know that you don’t know what can befall you; you know that you will be imperfect in predicting what treatments might exist tomorrow (that don’t even exist today.) This offers greater flexibility.

POLST

POLST is the newest of these directions. Out-of-hospital DNR.

-Active field (many reasons to congratulate ourselves, but there are nodes of weakness in end-of-life care)
Substantial improvements in palliative care
Limits of advance directives
Recurrent problems in

MICROMANAGING DEATH

Hawkins, Ditto, Danks, Smucker, 2005
Documents, limits to living will
91% of patients prefer surrogate flexibility
Few patients wish to record specific preferences
Many patients wish to record values and goals, choose surrogate

It is the perfect punishment for a bureaucrat to be placed in the clinical arena to clean up what you’ve done (in my previous job, I was a bureaucrat, defining these things- end of life brain death.)

FACTORS IMPORTANT AT THE END OF LIFE

Steinhauster, Chrstakis, et al
JAMA, 2000
Documents differences between patients and doctors about priorities

FACTORS RATED HIGHEST BY PATIENTS

-Freedom from pain
_Peace with God
-Presence of family
-Mentally aware
-Treatment preferences followed
-Finances in order
-Meaningful life

-Mentally alert
-Free from pain

Sometimes these two contradict each other- mentally alert and free from pain is difficult. Physicians are worried about people who ask about finances, thinking that means they don’t care about the patient. But at the same time, grandparents would rather give money to grandchildren to college than be treated sometimes.

PATIENTS’ KNOWLEDGE OF OPTIONS AT END OF LIFE

-Silveira, et al, 200
-Most patients misinformed about options
-Making Advance Directive provides insufficient education about options
-Making AD does not increase comfort with end of life discussion
-Patients learn most when serving as proxy

How many of you have served as healthcare proxy for someone else? Just a handful. More and more hands go up as I ask that question. Until you are in that driver’s seat, difficult to appreciate how challenging and difficult this is.

FAMILY CAREGIVERS

- Provide 80% of long-term care for elderly, disabled, seriously ill
- High expectation
- Low training and support
- High burn-out
- High morbidity/ mortality

How to make real our public and legal obligation to provide the most care possible in the home setting. In terms of really walking the walk and providing support and training to family members and community members, we have fallen terribly short. There are extraordinary levels of burnout, in fact morbidity and mortality by spouses who are primary care-giver.

END OF LIFE PEDIATRIC CARE

-Mack et al 2005
Parents and Physicians differ on goals of end of life care
Doctors value biological outcome, treatment
Parents value communication
-What to expect
-Speaking directly to child

Doctors, and they’re not wrong, are pushing for biological outcomes- hoping to extend the life of the child. And yet for parents, there is often a neglected value of trying to include the child in the decision-making. To try to communicate in a way that is neither frightening nor overly mysterious to the child. Sometimes what extent to communicate to sometimes very young children about this.

ETHNIC DIFFERENCES IN EOL CARE

-Welth et al, 2005
1400 African American and white family members of deceased patients
Black patients lack advance directives
Black patients report greater financial risk
Black families/ friends provide more home care

Similar studies for Asian Americans, recent immigrants- we are not all the same. And yet our policies are still to an extent that is unacceptable, cookie cutter policies.

NEW YORK EOL DECISIONS

-Surrogate choice based on judicial decisions
Clear and convincing evidence needed
No clear mechanism for surrogate decision-making for majority of New Yorkers
-Who lack advance directive
-Without clear and convincing evidence

Judge Walker’s decisions had an enormous way of shaping New York law. Clear and convincing evidence (highest possible) before withholding or withdrawing medical support. Depending on what hospital you’re in, that does or does not count as treatment (conversations vs. advanced directives.) Only other state that holds like this is Missouri, others that come close. Most other states allow family members to stand for somebody.

WHEN OTHERS MUST CHOOSE DECIDING FOR PATIENTS

FHCDA hurdles- viewed as step to PAS
Over many years the Family Healthcare Decisions ACT (FHCDA)- many sponsors in the Senate, from medical associations to others. Quite a few checks and balances, would not allow for medically-assisted suicide- but it has not passed yet.

Either it encourages physicians/ families to circumvent the law or it prevents patients and families from having care given to them.

This particular bill carved out permission for family members to make decisions on behalf of one small group. For people who never had decision capacity- the mentally retarded- there was before 2003, no way to withhold or withdraw life-sustaining treatment. It may not be something you yourself would wish for you, but to preclude such a choice for every member of the community irrespective of faith, etc is a shocking thing.

EVALUATING PROGRESS IN END OF LIFE CARE

-Accumulating research
Better information on practices
Better access to palliative care
Frustration with existing options
Room for improvement

We’re getting better- still many clinicians/ physicians are currently frustrated and there is room for improvement.

Thank you.

Rabbi Dr. Moshe Tendler: I was invited to teach, but I must admit I’m not going to be able to teach as much as I just learned. Two brilliant presentations- thank you very much. I’ll ask Dr. Popp to make those slides available to my Bioethics class next semester; they’ll benefit greatly.

Issues in end of life care are all addressed in Jewish law. Issue is understanding Jewish law, most importantly, discussing Jewish law between those who have other opinions. I read the nature of science regularly and we have there retractions, apologies; I heard something I didn’t know before; I made an error. You rarely see that in our response literature. Kind of absolute certitude when the people write and as you all know this is an area where input of medical and science doesn’t modify the law but asks the law to rule again on the new cases. Issues of comfort care, quality of life, patient autonomy all are clearly outlined in Jewish law. I’d like to however, point out, that not everybody who comments on Jewish law is able to understand the complexity of modern medical science. At a conference last May in Columbia, a respected member of the rabbinate posed a question- how can you approve of brain stem death when a polio patient who is walking around and needs the benefit of a ventilator- why isn’t he declared dead? His inability to understand the difference between a polio patient walking around and a brain-dead patient indicates a lack of understanding about what we’re talking about. Likewise when someone poses as an issue of Jewish law the case of a shochet slaughtering an animal which is brain-dead- the shochet sneaking into an intensive care unit designed for cows and goats and finding an animal on the ventilator and then cutting its throat- how could you lose that as an example of whether a brain dead patient is halakhically dead or not.

The Talmud teaches us that “failure to understand is not an excuse-“ if you speak in the name of Torah, then you make sure you understand what Torah says. Otherwise you denigrate the greatness of Torah and cast aspersions on the greatness of the Jewish people. God has promised us when we speak to other nations, people will say what a wise and understanding nation you are.

Something that will be of great help to us- impact on the nature of autonomy. I believe this will become the legal standard in New York; it is already in New Jersey- inevitably the doctor will have to speak to the patient, to a patient advisor, whatever you call him- proxy, healthcare, living will- and have a clear understanding of patient autonomy- what the patient wants. Failing to communicate is one of our real problems and that was clearly pointed out in the previous presentations. Failure to communicate between patient and family and certainly between patient and doctor, between doctor and religious guide before the patient. I’d like to bring up one more point before we move into the slides- in Israel, there’s a battle going on now because the Knesset have passed a bill and the bill allows a hospital to put a time-clock on a ventilator so that it will turn itself off. Ventilation is becoming there a medical treatment with a defined time element. A doctor orders ventilation for 24 hours and after 24 hours it turns itself off unless the doctors remove the order.

This is looked upon by some of the most honored Rabbis in Israel- who missed the point that this law was passed in 2006- suddenly it made the papers; now they are yelling it’s murder. Rabbi Abraham Steinberg, great Talmudist, great Talmid scholar, carried the brunt of interacting with Rabbis on medical issues- here’s why the time clock was put in- to encourage the child to try ventilation. So if the patient says I don’t want a ventilator- if the doctor feels this is something that will help the patient get better- the patient has pneumonia, put him on the ventilator for two or three days until antibiotics come in- then the time clock was put in to encourage that patient for him to try the ventilator, not to reverse the patients. Somehow it showed as the reverse! The doctors are trying to kill the patients! The time clock is like a Shabbos clock- it turns itself off (the ventilator)- you have to make Kiddush and that’s all.

Issue of the quality and sanctity of life- _______ by Dr. Fred Rosner regrettably is not regretted by any other rabbi- what I showed you before was just the page.

The Talmud in Kesuvos lays down an attitude towards death- death is not the ultimate enemy. And that is critical in understanding the halakha which says that we don’t want to fight for the last breath. That quality of life is a critical issue in halakha. The Angel of Death had a study partner, Yehoshua ben Levi. Yehoshua ben Levi asked the Angel of Death- show me my place in the Garden of Eden. Where will I be? Good friend, so while walking along the road, he said- that sword you carry; it frightens me. Let me hold it. Good friend, he let him hold the sword. Saw the place where it would be so he jumped in and shouted, “I swear in the name of God then I will not come out!” So Angel of Death communicated- I assume Hakadosh Baruch Hu also has email or something- and says what do I do now? He swore he won’t come out!

“Go find out,” He said, “did he ever abrogate a vow before?”

Nope, they checked his record. “Then not going to abrogate a vow today, so let him stay.”

Okay, says the Angel of Death- but give me back my sword!

Give back the sword to go kill people? God says yes- “Give him back the sword- my people need it.” So that sets the tone- there is a time to die.

The next case in the Talmud discusses physical pain. Is pain a reason for cessation of therapy? Again, a case, famous case of the redactor of our Mishna, R’ Yehuda HaNasi was dying and his students were praying and therefore death did not come. The maidservant, who saw the pain that R’ Yehuda HaNasi was suffering, threw down an urn from the upper story, interrupted the prayer and let R’ Yehuda HaNasi pass away. And the sages acclaimed the wisdom of the maidservant- she knew when to let go.

Similar case, a little more complicated- martyrdom of R’ Chanina ben Tradyon- the students said breathe in the flames so you’ll die quicker. He said he can’t do that; let the one who gave me life take it away. But when the executioner said if I take away the wads of wet wool placed on his chest to prolong his agony, will it be enough to reward me with a place in the world to come? R’ Chanina said yes. Now these stories are not stories. Talmud has no stories. It is a way of presenting a halakhic decisision.

To breathe in the flames is forbidden. But to stop that therapy (removing the wads of wool) is acceptable. To initiate a life-ending procedure, however, is forbidden.

What about psychological pain? These are cases of physical pain. Here there are a number of Talmudic references, many of them directed to the issues at hand. When do you switch to comfort care? When do you give up aggressive attempts to prolong the life of a patient?

Famous story of Choni Ha’Maagel. Choni Ha’Maagel was our Rip Van Winkle. He slept for 70 years. When he came back he could not find a social niche for himself. He came back to the study hall to join the people studying and when they could not understand a passage, he would elucidate for them. And they would say this man is as brilliant as Choni Ha’Maagel and he would say that I am Choni, but nobody would believe him. And he suffered the anguish of not having a place in society. He prayed to God to take his life- and God acceded.

There he was not suffering any pain- this was psychological trauma.

Similar case recorded in the medrish when a woman came to Yossi bar Charlafta and said to him I am too old; I want to die. Life has lost its flavor for me- I want to leave this world. Yossi bar Charlafta asked, what did you do to deserve to live so long? So she said every morning before doing anything, I go to synagogue and I pray.

I remember that in the Lower East Side- I grew up in a European shul in the Lower East Side (laughter) that when I accompanied my father to shul at 6:30 am already there were women there, saying Tehillim. So he told her not to go to the synagogue anyway- and she absented herself from the synagogue for three days, and she died.

One more case- Let me direct myself to specifics. I am speaking now to a Rabbi in a community. A community with a high concentration of Chassidim, so-called Chareidim. And I am a member of the board – issue of fighting for the last breath. Issue involves CPR on patients who clearly were terminal for days and days and finally stopped breathing. Intubate them, they will resuscitate them, time and time again, each time having the heart beat 30 seconds or less- because these are the instructions they receive from their rabbis. There is no basis for that in Jewish law; it’s a violation of Jewish law. In that case, that person is called a “goses” for sure. Goses- lest the flickering candle be put out by your actions.

Difficulty in getting this message across. Part of it is a distrust of the medical profession. Same thing in Israel- they don’t trust their doctors; doctors will take out the heart before the patient dies. Old battle, happened by autopsies too. But something has come into the field that needs to be included in our discussion and that is the case of cardiac death. So-called circulatory death. Among New England Journal of Medicine three articles written about it. I’m annoyed that I missed that in my reading. What do you mean by cardiac death? We’re arguing for years about brain-stem death, but cardiac death is accepted by everybody. Suddenly the term cardiac death has a whole new meaning. It doesn’t mean the heart stops. It means I stop the heart. Case of cardiac death- 15 years. Convinces the physicians to stop therapy which includes removal from the ventilator, which means the patient will certainly die, but before he dies, they treat the patient to improve his organs for organ transplantation- put in vasodilators, other chemicals which are not mentioned which are clearly not used for the benefit of the patient but only for benefit of organs. Now, fundamental challenge to Jewish ethics. One thing to let a patient die- another to kill a patient.

You can’t say that because a patient doesn’t want continued therapy, therefore I can kill him! The difference between active and passive is critical in Jewish law. According to the current thinking, anytime a patient says I don’t want any end of life prolongation, then the doctor has a right to take the patient off and take out his organs. The thought being, what difference does it make how I kill the patient? Benefit of the patient- I pull the plug; he dies in two, three minutes. Then I take him to surgical theater- at least half an hour waiting for the elevator, then two or three hours until he dies- so why can’t I remove the organs to save so many lives? This is the classic example of the slippery slope- letting the patient die versus killing the patient. This is known in medical ethics as Dead Patient Rule- that has been violated for past 15 years without anyone raising an issue until the New England Journal of Medicine raised an issue.

Especially in pediatric care- it’s hard to find a heart for a newborn who is born with left ventricle failure. Therefore, whenever it’s possible to get an organ donor for someone- you wait until the patient dies- there is a cardiac silence. For how long? For 75 seconds.

[Slide show goes crazy- how do I get mine back, inquires Rabbi Tendler- a little amusing]

75 seconds, the patient is dead. But the heart can be reshocked into life. So what we do is we’ll take this heart, which we’re taking from a dead patient, put it into another patient, and that patient will live. So we have a little bit of a problem- why is that first patient dead? Why can’t we shock the first patient alive again? Why is he dead- because the advanced directive of the family has said I don’t want to shock him back to life? So then I take the heart out, shock it back to life and give it to another patient. Jewish law would view this as murder. You cannot equate that with brain death.

“Brain death is accepted universally by every intelligent individual. But cardiac death, a new kind of cardiac death, where it is based upon a heart that stopped, and transplantation is based upon the fact that I can shock that heart back to life- then why did you declare that first patient dead?”

Autonomy is in full effect in Jewish law. A patient has the right to say this life is unacceptable to me. I’ll finish with another example from the Talmud.

Talmud Menachos- they made Techeles (time of Luz.) God rewarded them with everlasting life; nobody died in the town of Luz (our Shangrila.) And when life lost its salt, men would go outside the town of Luz and die. And these people were looked upon as being the great Tzaddikim!

Stem cell research, could make new organs- then no individual would really have to die (no rejection problem- new lungs, new liver, new pancreas)- only one problem. What am I going to do with another fifty years of life? He maybe can live long, but why. He’ll take in every tour already. He will have a chance to take advantage of great good of this earth over and over and over again. At that point, life will have lost its flavor and he won’t be benefiting much. Also, what are you going to do getting jobs for young people? Worker in my plant who is working in my plant for 80 years and who is perfectly healthy because has new stuff- then why hire anyone new? Therefore suggests that at age 150 person should go into hospital and never leave.

Issues of patient autonomy, sanctity of life, quality of life- distinction between withholding therapy and cessation of therapy- all that is clear in our literature. Clear instructions from our sages and these instructions are in full accord with the best of medical ethics thinking today- thank you.

Rabbi Dr. Edward Reichman: Just want to thank each of our presenters/ doing to the extraordinary complexity of these issues, one cannot obviously walk away from this conference and assume they can pasken on any particular individual case. Opportunity to have many different physicians- due to limitations of such a conference, cannot have every halakhic physician who addresses these issues to be here also. We encourage you to discuss these issues before they should become relevant (hopefully they should *not* become relevant.) I would encourage people to answer questions- please state, if you could, to whom the question is addressed.

QUESTION: The question is addressed to Rabbi Tendler and it involves the August 14 article in journal and the time-clock issue. In those three articles, it was very clear that the case that brought it up, which was 3 infants who had a heart transplant from donors who had their life support stopped- it was a call that the Dead Donor Rule should be abolished. And Robert Truog (Medical Ethicist in Harvard and pediatric endocrinologist) said several things- said first of all, brain death- in secular medical ethics- say brain death cannot be supported on philosophical grounds. The person who is brain dead can gestate babies, can secret hormones, can digest food, can ____ urine- so very hard to say brain death is dead. In fact Professor Whitlow now at Harvard- said nobody on President commission would say brain death is dead but it is some nonsense they would put up with because it does good- said we really rejected brain death anyway; it may be important to just do away with the Dead Donor Rule.

SOMEBODY: Is there a question?

QUESTION: Yes! It’s not killing patients- it’s that they never supported it.

RABBI TENDLER: I don’t think you understood what I said. I said that brain dead is the ONLY definition of death. We have problems defining death. The only time we don’t have problems defining death is by putrefaction like in the time of the Chasam Sefer, wait three days before burying him, and bury him with string with bell attached so in case he wakes up he should be able to notify people he wants to come out. The distinction between brain death and putrefaction is the distinction between organismal death and cellular death. The Torah says dead comes with organismal death- look in Shulchan Aruch, Shin Ayin- person who suffers massive wound through spinal column is halakhically dead, even though heart is dead. Problem is most people never took Bio 180 where you took a heart out of a little frog and put it into a dish and watched it beat. You can keep the patient’s heart beating for days and days. No definition of death which is cardiac, because for cardiac there is CPR- unless CPR is delayed long enough for brain to die. That’s what kills a patient- the failure of blood to reach the brain- when blood supply to the brain is no longer dead. I didn’t want to get involved in that topic, but since you represent the other side, I think it’s important to mention there is no other side.

[LAUGHTER]

Rabbi Dr. Edward Reichman: Did I mention that there are differences of opinions?

I do want to ask Dr. Powell to comment- she has some very important factual clarifications.

Dr. POWELL: I so admire your frankness and let me in that spirit comment. As I had mentioned earlier, I was privileged to head the committee that produced the New York City’s description of cardiac death. We set guidelines that require cardiac-pulmonary cessation of function, a five minute interval. We do not permit the use of vasodilators. We have a number of different criteria that would prevent the rather rapid harvesting of organs described in those articles. In New York Law, two separate means by which you can meet criteria for death. Whole brain criteria for death (whole brain death, not brain stem) or you can meet the criteria for death via cardio-pulmonary cessation. We have recognized, actually specifically based on commentary in the Jewish community, that there are different

Professor Truog is the last person I’ll comment on. He has always rejected brain death; his views do not represent the majority. There is no possibility of Dead Donor Rule being rejected; people will argue about these issues.

Dr. BURNS: This is to Dr. Popp. You hinted at, very gently, and Rabbi Tendler expanded, that there is a lack of knowledge by many halakhic decisors- and in fact there are thousands who know minutiae of Sabbath laws, etc- there are probably fewer than a dozen who really know end-of-life issues? How can this be passed on to Rabbis, since they don’t come to YU to hear these

Dr. POPP: Not sure I’m in a position to comment about how the rabbinic community can recognize its limits. Sometimes they need to call in a consult- it is my experience that rabbis *will* often call in a consult, someone they see as more expert or more knowledgeable. Oftentimes, they will do that- that is to be respected and lauded. It’s not my goal to decide who the family should turn to- whoever that Rabbi is is as clear on the medical facts of this particular case as it is possible for him to be. I’ve had situations where the Rabbanim had significant misconceptions about this. Sepsis- pulmonary ______- important to clarify that to the Rabbi. The project that I am a part of that I made reference to I think has been very helpful. A number of us put together opportunities to improve – Rabbanim who participated, almost without exception, found it useful.

RABBI DR REICHMAN: I’d like to add YU is particularly trying to remedy the situation by trying to include clinical medical issues in rabbinic training- precisely for that issue. I think we’ll take one more question.

QUESTION: This question is for Dr. Popp. You mention Rabbis speaking with physicians- how does that work under the laws of Hippa?

DR. POPP: Hippa does not preclude situations where family decision makers or patients themselves actively want or use the healthcare proxy form popularized by the Agudas Yisrael- specified which Rav is to be contacted about this.

We will go straight to the breakout sessions. A later addition to the breakout sessions was Dr. here to speak about specifics of Golubchuk case.

Rabbi Dr. Howard Apfel- Belfer Hall 207: Assisted Suicide and the Value of Life

Reena Gottesman, Moderator: Good morning. Thank you for joining us at the Yeshiva University Student Medical Ethics Society conference on Sanctity of Life. My name is Reena Gottesman, pre-med student- and I will be your Student Moderator. Our speaker, Rabbi Dr. Howard Apfel, will address euthanasia. Rabbi Dr. Howard Apfel is a pediatric cardiologist specializing in cardiac ____. He received his medical degree at ____ Downstate. Columbia Presbytarian Medical Center. Rabbi Dr. Apfel received his rabbinic ordination from RIETS- currently teaches Talmud at Marshall Stern Yeshiva Academy for Boys, teaches Bio courses at Landers, Gruss Kollel. Course at Einstein on Shabbat laws.

Rabbi Dr. Howard Apfel:Thank you and good morning. Not really our topic, but I thought I’d bring it out a bit for discussion- one of the issues that just came up in morning session was this issue of cardiac transplantation after cardio death and not after brain death. We have the makings of a very fiery and interesting discussion. I think the tension wasn’t fully brought out between the questioner, Rav Shulman and Rav Tendler’s response- part of the question is something we are going to touch upon in our topic. the idea that someone can regulate what sounds like in principle a very good approach to something- instead of being limited in some degree in terms of donation, the fact that one has the ability to make use of a greater population of donors through cardiac death- also eliminating the philosophical problems of brain death- so why should cardiac death be more controversial? Because everybody, whether a secular ethicist for the most part, including most rabbis- will accept cardiac death- there are some exceptions; Rav Aaron Soloveichik requires all three (cardiac, respiratory and brain.) Somewhat alluded to by Dr. Shulman- will there be medications given to the patient to lead to premature cardiac death?

Issue for us- active measures to shorten life, to hasten demise, in the hopes of some greater good. Now, when they originally asked me to speak about this topic, I didn’t have a very positive reaction; this is not exactly one of my favorite topics, for several reasons. One reason is that it’s a davar pashut- it’s a very simple issue. I wasn’t sure anyone would show up here because what could possibly be the halakhic perspective on assisted suicide other than it’s assur? Is there any room for this? Certainly if you look at popular press, secular press, there’s a lot of material on assisted suicide. And the trend is certainly increasing in interests for this modality.

In terms of halakhic responses, you’ll find very little- Dr. Breitowitz wrote about assisted suicide, Steen Resnickoff maybe- pretty clear reasons as to why not. There’s no room at all in halakha for active suicide. Suicide is absolutely forbidden.

Mesechtas Ketanos, Mesechtas Semachos, Perek Bet, Halakha Aleph: It’s so bad that you even take it out on the person after death. We don’t have that interest in “kevod ha’meis” in terms of suicide. All the normal things we do to honor the person who passed away, we don’t do for a suicide victim. We still take care of the relatives, but the connotations by a suicide are extremely negative.

The Rambam says that someone who kills himself is an act of murder. It’s only because of technical difficulties that you’re not chayav misah for committing murder. There’s an idea of “chiyuv misah in Shamayim”- what you’ve done is something for which you would be required to be punished with execution. After the blood of your souls- that verse in the Bible is referring to someone who kills himself.

It’s not a far leap, then, to assume that since it’s such a horrible sin for someone to commit suicide, to facilitate for someone else doing it is equally onerous- certainly in an active sense-

Genesis 9: 5- “A man to his *brother*” – Torah telling us how a person will be held responsible for any act of murder, even if it is his brother. Why would you kill your brother- because it’s a merciful thing to do to kill someone! You’re doing it because you love them. Nevertheless, the Torah is very explicit. Killing someone in an active way is absolutely assur.

What about people who give them the means, but then leave? There’s a lawyer who is very well-versed in what he can get away with- you’re not doing anything active; you’re just facilitating- is that something that has any room in halakha- someone else doing this?

What about the total passive facilitation of anther person? There are a whole slew of issurei d’oraisa- even if you just told them what to do. There are many books out dedicated to helping people end their life- any means of facilitation of someone ending their life- you’d run into:

1. Lifnei Iveir
2. Lo Ta’amod al dam Re’echa
3. Hocheach Tochiakh es Amisecha

So there is no way to allow this. Slippery slope- no room for discussion; there isn’t a single proponent of this.

So what are we going to talk about for the next half hour? Well, there is a trend now for assisted suicide/ dying which is quite different. More and more liberalization in this area. Probably more intense in countries outside of the United States, but even in the United States, the trend is toward greater comfort with things that years ago used to be very uncomfortable even for a non-religious person.

Even back in the 70s, as a child, I remember what a big deal Karen Ann Quinlan’s case was- to take someone off the respirator. I remember my father, who was a physician, was very involved with it. Nowadays it is not such a big discussion. My experience in ICU is that when the patient is indeed terminal, for most patients and most physicians for sure (general society, not religious people), it’s not even almost a discussion- to them, just remove the respirator and let things take its course.

There was a vote- outcry- and you can see the trend moving toward its more active role.

1980- Hemlock Society is founded in Santa Monica, California, by Derek Humphry. It advocates legal change and distributes how to die information. This launches the campaign for assisted dying in America.

1984- The Netherlands Supreme Court approves voluntary euthanasia under certain conditions.

1990- Supreme Court decides the Cruzan case, its first aid in dying ruling. The decision recognizes that competent adults have a constitutionally protected liberty interst that includes a right to refuse medical treatment.

1990- Dr. Jack Kevorkian assists in the death of Janet Adkins, a middle-aged woman with Alzheimer’s disease. Kevorkian subsequently flaunts the Michigan legislature’s attempt to stop him from assisting in additional suicides.

1991- Dr. Timothy Quill writes about “Diane” in the New England Journal of Medicine, describing his provision of lethal drugs to a leukemia patient who chose to die at home by her own hand rather than undergo therapy that offered a 25 percent chance of survival.

1994- Oregon voters approve Measure 16, a Death with Dignity Act ballot initiative that would permit terminally ill patients, under proper safeguards, to obtain a physician’s prescription to end life in a humane and dignified manner.

STEP 1: There are options. Refusing to participate in assisted suicide, facilitating it, or actively helping the patient.

STEP 2: Analyze the factors. Assign a value quotient. Importance of minimizing pain, cost-benefit analysis, halakha. Rabbi Bleich has Obligatory, Just Good, Bad, Forbidden as ways of categorizing.

STEP 3: Take your factors after assigning value quotients, then create a hierarchy. That will determine STEP 4, which is Decision- what am I going to do?

So why would halakha come out one way and general society would come out another? This depends on your standard of ethics. What is it secular ethicists use? Humanistic sources, philosophies, rational approach. Our approach is going to be very different- ours will be Torah- Torah She’Baal Peh, Torah She’Bichtav, Rabbis, etc. We will see a parting of ways of the Torah’s way of looking at our topic and general society.

Issue of the sanctity of life is always going to be behind the scenes, working through all the discussions. Life is not just a biological reality; we are not like other animals. Humans have a higher life- seems to be infinite good, but not quite infinite- misat kedushat Hashem- but as close to infinite as it good.

To begin with, I wanted to start with something Rabbi Tendler mentioned this morning and that is the idea of a slippery slope. I have been at ethics meetings in the hospital and as soon as I mention slippery slope, I get thrown out of the rooms- people don’t want to hear it anymore. I want to give the first illustration of this (and this is probably a fictional account, just written to give a message):

“It’s Over, Debbie”

The call came in the middle of the night. A nurse informed me that a patient was having difficulty grabbing rest, could I please see her.

I grabbed the chart from the nurse’s station on my way to the patient’s room: a 20-year-old girl named Debbie was dying of ovarian cancer. She was having unrelenting vomiting…Hmm, I thought. Very sad. As I approached the room I could hear loud, labored breathing. I entered and saw an emaciated, dark-haired woman who appeared much older than 20. She was receiving nasal oxygen, had an IV, and was sitting in bed suffering from what was obviously severe air hunger. The chart noted her weight at 80 pounds. A second woman, also dark-haired but of middle age, stood at her right, holding her hand. Both looked up as I entered. Her eyes were hollow, and she had retractions with her rapid inspirations. She had not eaten or slept in two days. She had not responded to chemotherapy and was being given supportive care only. It was a gallows scene, a cruel mockery of her youth and unfulfilled potential. Her only words to me were, “Let’s get this over with.”
I retreated with my thoughts to the nurses’ station. The patient was tired and needed rest. I could not give her health, but I could give her rest. I asked the nurse to draw 20 mg of morphine sulfate into a syringe. Enough, I thought, to do the job. I took the syringe into the room and told the two women I was going to give Debbie something that would let her rest and to say good-bye. Debbie looked at the syringe, then laid her head on the pillow with her eyes open, watching what was left of the world. I injected the morphine intravenously and watched to see if my calculations on its effects would be correct. Within seconds her breathing slowed to a normal rate, her eyes closed, and her features softened as she seemed restful at last. The older woman stroked the hair of the now-sleeping patient. I waited for the inevitable next effect of depressing the respiratory drive. With clocklike certainty, within four minutes the breathing rate slowed even more, then became irregular, then ceased. The dark-haired woman stood erect and seemed relieved.
It's over, Debbie.
--Name withheld by request
From “A Piece of My Mind,” a feature in the Jan. 8, 1988, issue of JAMA (Vol 259, No. 2). Edited by Roxanne K. Young, Associate Editor.

~

In this situation, you can understand it- it seems heroic. At least to the regular person…

Now compare to “Assisted Suicide of Healthy 79-Year-Old Renews German Debate on Right to Die”- Roger Kusch on Monday in Hamburg, Germany, with a video of Bettina Schardt, 79, whom he helped to commit suicide

So Roger Kusch helped her kill herself- the only reason Bettina wanted to die is because she lost the meaning in life; she didn’t want to move into a nursing home.

Why don’t we solve all life’s problems/ pains with active assisted suicide?

~

“Netherlands grapples with euthanasia of babies: Hospital carries out procedure on few terminally ill infants”

Amsterdam, Netherlands- A hospital in the Netherlands- the first nation to permit euthanasia- recently proposed guidelines for mercy killings of terminally ill newborns, and then made a startling revelation: It has already begun carrying out such procedures, which include administering a lethal dose of sedatives.

The announcement by the Groningen Academic Hospital came amid a growing discussion in Holland on whether to legalize euthanasia on people incapable of deciding for themselves whether they want to end their lives- a prospect viewed with horror by euthanasia opponents and as a natural evolution by advocates.

In August, the main Dutch doctors’ association KNMG urged the Health Ministry to create an independent board to review euthanasia cases for terminally ill people “with no free will,” including children, the severely mentally retarded and people left in an irreversible coma after an accident.

~

Now, in those situations the person is not going to die! Mentally retarded, irreversible coma and children- the doctors have decided the quality of life is not worthwhile and they think it is fine to kill the patients. Slippery slope with no reverence for life- for the sanctity of life.

THE PHYSICIAN-PATIENT RELATIONSHIP

I have more expertise in pediatric cardiology than all of you, but in terms of ethical decisions, probably don’t know as much as say, Rabbi Tendler. Yet there is some sort of notion, in the Netherlands, that there is something special about physicians that they have some sort of special power to decide who should die/ assisted suicide.

There is an article where even euthanasia advocates say this is not possible- Kathy Faber-Langendoen, MD and Jason HT Karlawish, MD, for the University of Pennsylvania Center for Bioethics Assisted Suicide Consensus Panel- “Should Assisted Suicide Be Only Physician Assisted?” – that this is not a doctor or physician’s decision

Jonathan Rosenblum wrote a response to a case which we are going to be discussing in a moment- he wanted to show that Judaism views the MD’s role very differently.

This is from Rav Kook, first Chief Rabbi of Israel- great scholar, great Talmid Chacham- talks about Metzitzeh b’Peh- one of the questions that are an essential part of that discussion is we have a circumcision and part of the procedure is to have this metzizah, this sucking out of the blood. Gemara in Shabbos will tell you the purpose of this is to protect against danger- done for medical reasons. And yet in cases we all know that contemporary suicide will tell you that doing such a thing is dangerous of itself. So there’s this great conflict between doctors and what Chazal seems to tell us. Whole topic of what to do when Chazal and science seem to conflict. What I want to focus on is the perspective R’ Kook gave to the word “doctors.” He says the whole believability of doctors, even in their field, in a halakhic sense, only rates to a level of doubt, to some degree. This is from SHV”S Da’as Kohen (topics of Yoreh Deah) Siman Kuf Mem Beis. If Chazal tell us something that’s definitive, that will take precedence over something that we view as being a doubt.

Don’t want to get into a metzitzah b’peh issue- just that a doctor has to realize that humility is probably the most important ability for him to acquire.

There’s a saying that “The best of the doctors are going to hell.” By this they mean, according to one interpretation, the doctor who does not know when to call a counsel; he has too much pride- the Torah’s view is to emphasize that aspect. they have to know above all else their limitations.

There was a nice approach that they formulated in Sha’arei Tzedek Hospital, a hospital in Israel that has a lot of halakhic input in it, one of the things they do is fill out a card- they have, or at least at one time they had, to put in the person’s name with their mother’s name- what did they want that for? A Misheberach. Realizing that again, in their humility, doctors are simply finite beings. So clearly halakha would part significantly from this European approach where the doctors are given such great authority.

This brings us to the United States.

“Every human being of adult years and sound mind has a right to determine what shal be done with his body and a surgeon who performs an operation without his patient’s consent commits an assault for which he is liable in damage.” (Judge Cordoza, 1914)

So here in the United States, the push for euthanasia/ assisted suicide comes from a different point of view- not from the point of view that doctors know best, but that people know best about their own bodies. Autonomy is the name of the game, and the word most frequently quoted in every hospital ethics meeting.

Now, autonomy, taken at its basic meaning, is that it’s my life- I get to decide what I want to do with it- should I not have a choice to end my life?

Physician-Assisted Suicide: A Halachic Approach
by Rabbi Yitzchok Breitowitz

“The watchword of the “death with dignity” movement is autonomy, or self-determination. All well and good. What proponents of autonomy fail to realize, however, (or more ominously, what they realize and fail to express) is that as formerly-unspeakable options become widely available, there is a tremendous societal pressure to have them exercised. […] What starts off as a “right to die” quickly turns into an obligation.”

~

“Gov. Lamm Asserts Elderly, If Very Ill, Have “Duty to Die” in The New York Times, from March 29, 1984- this is Gov. Lamm of Colorado. This is the slippery slope idea sneaking in over here- demonstration of where this could go.

~

Hypocrisy with idea of autonomy is with a case being discussed now- I don’t think this is an exceptional case at all; I think this reflects the attitudes of many physicians-

“Golubchuk Injunction Upheld- Winnipeg Hospital Ordered to Keep Patient on Life Support- Anti-Euthanaisa lader warns more action needed to protect Golubchuk, other patients from hastened death by doctors”

Winnipeg, Manitoba, February 13, 2008 (LifeSiteNews.com)- […] the 84-year-old cognitively disabled patient’s family has been battling hospital doctors who are determined to starve and dehydrate him to death regardless of the family’s wishes

~

But let’s assume for a moment- what would the Torah say about the concept in its ideal? Ideally, the concept is nice- autonomy. Does the Torah have a response to that?

There’s some who would say, and I’ve heard this argument, when I’ve had discussions in a setting with secular ethicists- they say you have this thing about suffering. You think there is something redemptive about suffering; we’re promoting end of suffering; you’re promoting suffering. I just thought I should dismiss that, as Yahadus has no such notion. There are certain groups who see that, but we do not.

Famous Gemara in Nedarim 10a- A Nazir is a choteh (sinner)- we don’t anyone depriving themselves of appropriate pleasures. A Nazirite who deprives himself of pleasures is considered as someone doing a sin. So how much more so to in any way afflict yourself- codified by the Rambam Hilchos De’os, Perek Gimmel, Halacha Aleph.

As true as this is in life, the Rabbis in Sanhedrin 45- the same goes for death. Judaism knows how to handle suffering; we have a perspective of suffering, but we don’t welcome it. It might be able to deliver great things for me in a certain sense, but never is it welcomed. Execution of an individual has to be done in the most humane, least painful way- make sure that he has a pleasant death.

So in terms of the suggestion that there is a pleasant side to suffering- that’s certainly not the way to go.

R’ Aaron Lichtenstein wrote a nice piece on understanding the duties of mankind, and in outlining and describing the duties of mankind, he starts out with this pasuk- God took the man and placed him in the garden to work it and to *keep* it (to watch it.)

So what is “to work it”- the mandate to man to be creative, productive, tikkun olam, to accomplish. So what is “to watch it?” R’ Lichtenstein points out two meanings- positive meaning of watching- we see the Rambam tells us in Hilchos Beis Ha- laws of Beis Hamikdash- need for Shomrim, guards around the Beis Hamikdash- if you’re not worried about an attack- using the analogy of Buckingham Palace, which has the guards- what are they doing there? Give honor to those palaces- not really there as a defensive point, just as a way of showing honor. We have a duty- respect, dignity and honor to the world and to ourselves. So to watch it means we have that responsibility. But “to watch it” also means to put a limit on our understanding of what we can do with the world around us. Anyone who owns a sefer might see that people write “To Hashem belongs the world and all the people in it.” Why do people write that in a book? Part of the idea is an expression is to say I want to write my name in this book to show it belongs to me, but I also want you to be aware, that really this book does not belong to me, not in the full and absolute sense of ownership. It belongs to Hashem. And he quotes the Gemara in Berachos about that pasuk which seems to be contradicted by another one- the fact that the land is given to man. On one hand, the world is God’s- on the other hand, the world is ours. Before the beracha, the world belongs to God. Once I make the beracha [blessing], now it’s mine and I can eat it.

So what does this mean- suddenly God made a kinyan [acquisition] with me where he formally owned everything and now I own it? No. A beracha says that Hashem owns everything- I am obligated to recognize that fact. I recognize fully that I am kind of borrowing the apple, that it really belongs to God, now I can partake of it. As true as that is with food or fruit and all the wonderful produce of the world- it is also true with our own souls. We have to recognize that our relationship to our own bodies is not an autonomous ones- we are really just “shomrim” of our own bodies. In this sense, it is limited shomrim- not just giving respect to our bodies but recognizing that we don’t have full jurisdiction to do what we want with our bodies.

Used this in two sentences- this is in “By His Light: Character and Values in the Service of God, pages 3-4”)

“The essence of modern secular cultures is the notion of human sovereignty; individual man is master over himself…”

“The basis of any religious perception of human existence is the sense that man is not a master: neither a master over the world around him, nor a master over himself.”

R’ Hershel Schachter goes into a limited discussion of autonomy- there is *some* room for autonomy in halakha. But in general, the distinction by us and halakha is that halakha and Jewish tradition don’t accept that we have autonomy (total.)

Brought out by the Rambam Hilchos Sanhedrin Perek 18: 6

If a person, by monetary matters, admits he owes someone money- that counts. But if a man admits he did something that makes him guilty for whipping/ lashes or bodily harm, a man’s own admission cannot be submitted to the court; it will not count.

The Radbaz when explaining this says that even though I am admitting the truth, I don’t have a right in that context, to afflict myself in that way. Only God has the right to make absolute decisions about what happens to my body. I myself do not. When you view this as a starting point, it’s difficult to have discussions with others- difficult to show someone that as an Orthodox Jew, this person doesn’t have that type of autonomy.

Now, this last two slides are dedicated to six opinions in the realm of euthanasia and where they draw the lines. But at this point in time I want to stop and ask for questions:

QUESTION: Being a nurse working over 25 years in ICU conditions, this is not a merciful God who will give a 20-year-old girl morphine- or my own mother, who begged and begged me to give her the morphine and I would have except her companion told me, “Oh, you’re going to get in trouble” and I was worried she would get me in trouble- pain is pain. Right now you have no answer- but you know, pain is pain- there must be a better answer.

ANSWER: So let me clarify this- Order of our experts-

1. Tzitz Eliezer
2. Rabbi Bleich
3. Rav Shlomo Zalman Ouerbach
4. R’ Moshe Feinstein
5. R’ Hershel Schachter
6. R’ Zalman Nechemiah Goldberg

The order is from the most limiting approach to euthanasia to the most liberal.

The furthest away from active euthanasia- but even they would absolutely give the morphine- there is no possibility that anyone would ever say you can’t give morphine to a patient who is in pain. Rabbi Bleich writes on this topic and says I agree when there is a choice between intractable pain (not curable), there is no way that you are obligated to prolong their life. Definitely no measures to prolong their life. What about hastening the demise? Medical literature- there’s plenty available to treat pain. We can keep people alive but recognize the fact that medicine today when working appropriately can do a lot, giving morphines, cocktails of benzos and narcotics to make sure the person is not in pain.

Others, R’ Shlomo Zalman and R’ Feinstein go further- not only would they allow morphine, but R’ Shlomo Zalman- there’s a teshuva out- you’re a little hesitant to give morphine because you might inadvertently do them in, since morphine depresses respiration. The prevalent view (and there are exceptions) I would say is that even if there is a possibility (you can never give the morphine in order to kill) but if your intent is just to relieve pain and you can do it without intent to kill, even though it’s possible you might, that’s permitted.

QUESTION: So you’re talking about the doctor double-effect. If you’re giving morphine to relieve pain but not to kill, but if you knew that the morphine would also kill the patient, can you do it?

ANSWER: No. I wouldn’t think you could find a leniency to do that. I don’t know why that would be any different. If you’re giving them the amount of morphine that will kill them, then how is that different with injecting them with potassium chloride.

QUESTION: In order to believe this, do you have to look at death as something negative- in many cases, it is a sigh of relief- if you look at death differently, possibly-

ANSWER: What are all these decisors basing their decisions on? What gives them the right to dictate these laws? It’s going back to the basic source- they are using different criteria- they are using Torah. Oral Law and Written Law. There is a famous story in Tractate 104 in Kesubos. The author of the Mishna was dying a very painful death- his students were praying to keep him alive and he had a handmaiden/ maidservant who was very close to him. So at first she said may the students win, but then she saw what he was suffering, so she said let Heaven win, let him die. She ultimately went to measures to try and stop them (the students.) Later on the authorities use this to show that there are cases where death is much preferred. These medieval decisors based on that story say you can absolutely pray and want that that individual should die. Both R’ Zalman and R’ Moshe says no one should feel guilty – completely legitimate and a hundred percent understandable to pray that they should die. However praying that someone should die is not the same as making an active, physical move to facilitate the death. The emphasis is not on the downside of death, but on the sanctity of the upside of life.

QUESTION: Your discussion of autonomy was very interesting, the whole thing was interesting- but I’m distressed by the assumption you seem to make that autonomy has no place in our decision-making concerning medical issues. You seem to assume that somebody else has the right to make the decisions, other than the patient himself, his surrogates- it could be the State, which in most of the cases you discussed was intruding himself, or maybe the physician or maybe the Torah or maybe some medieval decisor or maybe some Modern Orthodox Rabbi- I must tell you that I find that utterly unacceptable. The idea that anyone should intrude into an individual’s right to make a decision- is utterly unacceptable to me- maybe that’s my problem, but-

ANSWER: I appreciate your frank statement. Obviously there is a point of departure here between the global issue here. There is a point where we will not see eye to eye here. But there is a point where we will come together-and this is what is said by R’ Schachter- autonomy does have a very significant place. The way R’ Schachter looks at these issues is as follows- he puts it into the context of taking risks. For a person in Jewish law to take a risk with their life is absolutely forbidden, because you’re just borrowing your life- responsible to watch over it- now, what about situations where there’s extreme risk- and I say I want to take the risk. I want to skydive without a parachute; I think I’ll make it, what, 5000 feet? We would say, “You are crazy- forget it- you can’t do it.” What about the other issue? Guy with an ingrown toenail- he’s convinced I have to desecrate the Sabbath because of this. We say the same thing. What about in between- situations where one person feels is a risk and someone else feels is not a risk? No societal absolute on it- you get to points where there’s no absolute right or wrong on it. For example, he uses these situations- has a terminal illness, a person is in a lot of pain and needs an amputation. So do we say you absolutely have to do the amputation, or no? Begins to get a little grayer- R’ Schachter promotes the idea that you get to a certain point where it is totally an autonomous decision. Now unfortunately one of the extremes is euthanasia, mercy killing- but many of the middle cases, withholding all treatments, even hydration and nutrition- in that realm, he believes there is total – lots of backing source. I do not want to misrepresent Orthodox Judaism- there certainly is room for autonomy- just a very guarded, limited autonomy.

Plenary II: Who Decides and What to Say? Pediatric End-of-Life Challenges

Rabbi Dr. Edward Reichman: Thank yous and welcomes once more. We cannot cover all of the halakhic positions; there are many different halakhic positions. I have to say I was very heartened, walking through the lunchroom of Weissberg Commons- continue to generate more and more discussion. I know end of life decisions are difficult, but deciding which breakout decision to go to must have been very difficult also. I know that each one of you retreated to different exceptional sessions. Final apology I have is that Dr. Pelcovitz, who was scheduled to be here as moderator, will not be here- my apologies- I will be the moderator; I guess I will fulfill the adage of everything moderation. The session will be divided into two- first pediatric end-of-life issues and then a halakhic response.

Participant: I’d like to ask the participants to give Yeshiva University a rousing round of applause for such an excellent conference.

Dr. Alexander Okun: Thank you, Eddie. I actually work at the same hospital as you do- the Children’s Hospital in Montefieure. So when I talk about our work, that’s what I am talking about.

End of life care for children is receiving more attention in the United States than it has elsewhere. Leaders in this field, here, have shown that even in our nation’s top children’s hospitals, end of life care has serious shortcomings. So many have implored that we deliver end-of-life care better. We are doing, at best, a fair job. Mediocrity challenges our obligations to children in end of life care. My work is multi-cultural, multi-disciplinary, clinical and educational. Many of you will also work in a pluralistic society; in fact, you all will, and so it is an obligation that you have to understand and be familiar with and be sensitive to the issues that families face that are outside of halakha.

I am involved in the care of many children at my hospital- work calls for strength, deep understanding of end of life care for children. Start by reviewing some end-of-life definitions and terms.

The phrase “Palliative care” is oriented to intensive symptom management, mitigating pain and suffering and spiritual and mental support for children. Palliative care should be offered alongside regular care. It is appropriate for children whose condition is treatable and curable and also for those who are treatable and incurable (like cystic fibrosis), or those that are not treatable- severe cerebral palsy. Those children’s life expectancies are usually extremely hard to predict. This focus/ that focus on _______ care is called “end of life” care.

The term “hospice,” as Dr. Popp said, refers both to a place where expert end-of-life care is delivered and to a practice.

Much of pediatric end of life care is guided by the first ethical standard I will mention, the best interest of the child. Now, because of those of us where the interests of families, doctors or institutions may conflict with those of the child, even for the forcible removal of children with life-threatening infections from the custody of families who shun the use of antibiotics.

The next concept I’ll tell you about is called “proportionality.” Proportionality means realizing the cure is worth it in terms of the risk/ worth the foreseeable suffering involved. Now, what about experimental treatments? Often these treatments are available in terms of Phase 1 drug trials. The limits of toxicity are explored- that’s the purpose- how much you can give before they become poisonous. What’s clearly known is that research subjects themselves, adults, and their surrogates, or parents, routinely overestimate the chance that those drugs will actually give benefit. So even when we talk about one more chance or one more drug to try we have to be careful, because the odds of those drugs helping are much, much less than we would like to believe.

Those providing care for the research subjects, their clinicians- likelihood that this will benefit anyone need to be discussed clearly. Children’s hospitals try to foster a belief in miracles. I find this specific marketing strategy ethically problematic because it carries a risk of deception- does divine interaction only happen in US News’ top marked children’s hospitals? For the most part, physicians recommend treatments that are “right and good” (phrase from Bioethics.) All too often, care for children at end of life is to decrease suffering when ______- because of belief on the part of the child or medical team, the idea that life must be pursued- one must ask two questions-

1) Are the best interests of the child being represented?
2) In what situation, does sanctity of life fuel children needing to be put on more noxious and futile treatments? (probably the most controversial thing I’ve said thus far)

Rachel, who is 17 years old, has cystic fibrosis- prefers that when the next bleed occurs for air hunger, the doctors treat her with morphine until she dies (she does not want to be put on a ventilator.) Now, her parents don’t want to go for this. Now, in many areas a teenager’s autonomy is respected- especially with regard to sexual/ etc.

Noah is 14. Born with HIV- has renal failure, losing weight rapidly, no more big enough veins that haven’t clotted off or scarred to continue providing dialysis. Or let’s just say, for the purpose of this case, he is on his last vein. He asks why he hasn’t gotten a kidney transplant. He acquired HIV from his mothers- she had shared needles to inject heroin. His adoptive parents don’t want him to know. His doctors feel it is unethical to keep his diagnosis an unspoken secret- his adoptive parents will argue benevolent deception. One of the medicines Noah is on is the same as advertised by Magic Johnson- he can put this together; he can read; they suspect Noah knows his

Ethical groups- often will deliberate, mediate between parties involved. I am fortunate to sit on a wonderful one- the qualification of members of these committees is widely varied. The experience they have is often very limited. What would a group offering bioethics say to Rachel and Noah’s cases?

Supposing Noah gets ahold of his chart, accepts confirmation of the fact that he has AIDS, requests that his five-hour torture (dialysis) be stopped. He knows he will never get a kidney because he has AIDS- he would rather have comfort care and stop dialysis. And he is relieved to know why they haven’t offered him a transplant finally.

Dr. Popp referred to withdrawing and withholding- complex content- choices taken together withdrawing/ withholding- together those are considered foregoing. Health professionals sometimes worry that forgoing life-sustaining treatments are tantamount to causing death. Other physicians feel comfortable with the notion that the cause of death in such a circumstance is the disease. In Rachel’s case, it would be pulmonary failure; in Noah’s case it would be renal failure (because of his advanced AIDs.)

Some of these treatments, especially those good at relieving pain, can have depressive effects on the respiratory system- they may limit response of the person to oxygen/ carbon dioxide. At the same time, these drugs, like morphine, if they are used well, will relive any distress associated with these physiological changes. Now this *can* lead to apnea (cessation of breathing) but this is very rare if used properly, and it is foreseeable.

So is it okay to use drugs like morphine under certain conditions? Under rule of Double-Effect, it is, but the details are very, very tricky. Foregoing of fluids is fraught with additional controversy. Now, many dying children and adults, who maintain consciousness, once fluids and food are withdrawn- do not show signs of being bloated/ sick (this is current thinking; this may change.)

Tell you two things that take us away from the bedside and into current policy- attempts to say foregoing of care is justified have been made in England and other places. In the Netherlands, especially- one of these has received a lot of attention and a lot of controversy. On an even larger level, let me tell you that the specter of childhood death in developing countries can make our problems seem pretty small. Did you know that for every child in the industrialized world who dies from 1 month to 5 years, 20 times as many die from treatable or preventable causes like malaria, AIDs, etc- what trans-national responsibilities do we have to care for end of life care there too? We spend billions on this.

Medicine is above all a profession of service to individuals and families. Some would call it, especially those we work with, a ministry of service. We must understand the issue from numerous perspectives while holding deeply to our personal beliefs.

This work is hard. It’s rewarding. It’s best carried out by teams of health professionals from different disciplines. Emotional, psychosocial, spiritual and ethical issues.

Rabbi Mordechai Willig: Following Dr. Okun’s presentation presents a formidable challenge. His articulate, thought-provoking presentation leaves many challenges and unanswered questions. From the purely halakhic perspective, which is my mandate, there are numerous fundamentals before we can begin to discuss the particular situation of pediatrics. Dr. Okun referred to a number of times in his presentation, that pediatrics is simply a subset of some of the same thorny questions that exist with regard to the adult population. Some of those difficult end-of-life-issues were already discussed in the earlier session that I was privileged to be part of this morning. I’m not going to repeat what was said there. Suffice it to say that in the rabbinic community, there are widely diverse views as to what is our responsibility toward terminal cases. There is somewhat of a consensus- I use somewhat carefully- that in a situation where a person suffers from pain, we take this pain into account in our decision-making. This possibility of not taking all possible steps to extend life when this life is mired in intractable pain is in two halakhic giants. One is in Igros Moshe, R’ Moshe Feinstein. Two are in writings of The Steipler, R’ Yaakov Yisrael Kanievsky- both make clear, unambiguous reference to taking into account this pain and making decisions under certain circumstances to withhold treatment. Yes, from our perspective, withholding and withdrawing are not necessarily the same- different somewhat from the legal principles in the United States- from the perspective of withholding treatment, these two halakhic giants (and many others have joined them) are clear in this regard.

The question becomes: What about pediatric end of life? And very early pediatric end of life- neonates, etc. I’d like to share with you, this afternoon, something which we find time and time again in the halakhic world, where great rabbinic minds reach diametrically opposite conclusions in tackling these difficult questions. First I’d like to share with you something that has recent been printed in a volume written in honor of one of the earlier participants in this series of conferences- Dr. Abraham Steinberg- in honor of his birthday; “Bracha L’Avraham.” I was privileged to participate in this volume and Dr. Steinberg sent me a copy; very nice of him. On page 260 (262?) of this article there is a four-page article which is a letter written to Dr. Steinberg by a Rabbi in Israel who has expertise in the medical field- R’ Yitzchak Zilberstein, son-in-law of noted authority R’ Elyashiv.

It’s his response to the following question: Are we obligated to treat a baby, to lengthen his life, if he is in a terminal and difficult situation? One is a child in third week of pregnancy born to a 17 year old woman- not going to live too long. Another case, closer to Dr. Okun- 7 month old baby is dying of AIDS- what do we have to do to extend this patient’s life?

R’ Zilberstein duly quotes the opinions we mentioned earlier. Being from Bnei Brak, he gives priority to R’ Kanievsky. He says I’ve heard people say in my youth you need to do everything you can to extend life. So he quotes a source in Yoreh Deiah- salt on the tongue, the wood- he makes the following observation- you can remove something which is preventing the dying. So you should not be part of extending the life of a patient who is going to die

Igros Moshe, Chosen Mishpat, Beis, Ayin Hey, Aleph- Cancer which is terminal- no matter what cannot live more than a few months and during these motnhs he will live a life of incurable pain- you are required to tell the patient about his prognosis and ask him, do you prefer a life of pain or do you prefer death? If he prefers a life of pain, you prolong his life. If he prefers the other alternative, you should not give these treatments to the patient. Again, this is not unanimously accepted, but two very considerable halakhic giants are quoted on this page, page 268, are on this page.

Now comes this amazing line- what happens if this patient is a neonate? See page 269 – the incredible response by R’ Elyashiv- true that these other giants have said what they said. And I will tell you a tale at a school which I heard from a prominent Rabbi who was close personally with R’ Elyashiv when they asked him many years ago about a blessing recited over a Torah sage rarely recited in today’s world. So they asked him upon whom should you say this? He says for certain two such individuals- my mechutan, the Steipler, and R’ Moshe Feinstein. After that, don’t ask me. So these are the same two who are quoted in this response in 1994- yes, these giants said what they said; I’m not sure they are right- they said it based upon logic; they have no real proofs. But I’m not going to quibble with them- but at the same time he feels that even if a person is not obligated to extend painful life, objectively speaking, it is worth living, because we are not able to measure the value of life even if they are filled with pain. Therefore, an adult who refuses to be treated, perhaps we have to accede to his request- but a baby, who cannot express an opinion- perhaps we should be required to pursue that which is objectively the best thing for the baby, which is life. Moreover, he claims that it’s possible that the pain experienced by a little baby is not as pronounced as that of an adult, its systems are not fully developed- for these reasons he suggests extending the life of this baby.

I must tell you I read this in almost a state of shock. This is not the way I’ve been trained by my Rabbeim, but since it’s printed in this recent volume which has just came out, I felt a responsibility to bring it to your attention. I also felt a responsibility to call Dr. Steinberg and say “What? Are people really following this letter you received 15 years ago?” Dr. Steinberg said when he received the letter he was also surprised. At that time R’ Shlomo Zalman was still alive, so I came to him, I called him and he also said he doesn’t necessarily agree. So I decided to try to find something from R’ Shlomo Zalman related to this idea- so I pulled out a sefer called “Nishmas Avraham” by the famous Dr. Abraham- two quotations/ citations in Volume Four, both from R’ Shlomo Zalman, with whom Dr. Abraham was very close. The first is on page nun-

A “nefel” term of ours that refers to a child who in the normal circumstances would not live for even thirty days. But today we know that there are miracles of medicine- almost everyone can be put on a machine to live for thirty days- so R’ Shlomo Zalman has a remarkable insight- someone whose life never really got started. In times of yore, anyone born in eight months of pregnancy, was called a “stone”- even- wouldn’t desecrate the Shabbos to try to save his life; there was no purpose. That has changed! But as we see on page nun- it’s chayyei sha’ah shel nefel- you can’t really cure this patient. Only for a little while. But if you have the possibility of saving him for permanent life, then you have to do whatever it takes, even desecrating the Sabbath.

So you see that R’ Shlomo Zalman is saying that for a neifel one might do less- an even more stark rephrasing of this can be found on page Kuf Chaf Hey of the same volume. A child is born with a very serious condition. He can’t live too long. Had he not been treated, he would have died in short order. Now with various treatments, we can get him to live for more than 30 days. Is this considered a live baby with the attendant halakhic consequences (pidyon haben, have laws of mourning apply) or no? Perhaps there’s no preliminary status of being alive and he is called a neifel even if he lives for 30 days with this treatment. R’ Elyashiv says the baby is alive; he can’t live for a year so he is a treifah (different term of ours.) R’ Shlomo Zalman says no- he is patur from pidyon- he is not considered as being alive in the first place, “chezkas chayim.” Without these remarkable medical advances, he would have died in 30 days. It seems to me, therefore, from these citations, we have, as you have so often in Jewish life, divergent points of view. Assume that for a moment with respect for an adult you would follow the criteria of R’ Moshe Feinstein and The Steipler, what do you do with respect to a neonate? According to R’ Elyashiv, by a neonate you must intervene even where with respect for an adult, you would not- according to R’ Shlomo Zalman it’s the reverse! Even in cases where you *would* intervene with respect to an adult, you might not intervene with respect to a child.

I cite these sources simply to scratch the tip of the iceberg- there’s so much more to be said. These very painful issues- pain the patients, pain the families, pain the doctors and yes, pain the rabbis, too!- are among the most thorny ethical and rabbinic questions that come to us. And we have to pray to God, to Hashem, to give us the wisdom to render decisions which are correct, from all of these disparate points of view. Thank you very much.

Rabbi Dr. Edward Reichman: I’d like to open up the floor to questions.

QUESTION:

ANSWER: Once an individual turns 13 or 12 from our perspective, they are adults and have the ability to make their own decisions. We heard some statements from our colleague- about children 14 and 17- and by us it would be 12 and 13. However, that being said, it’s conceivable that a child under that age has an understanding and over that age does not- and one must have an understanding in these matters, so we won’t make it the automatic.

QUESTION: R’ Willig, I’d like to ask how far we take this concept of a nefel. There are many people who would not have survived 30 days, let alone 100 days- but if you take the concept of a nefel seriously then you could not violate Shabbos to save this person’s life even when they are 25 years old-

ANSWER: Subject to provisos where cases where the person is terminal- we’re not discussing cases where the person has the potential to live a normal life- in that case, you must violate the Shabbos to save him. To my knowledge nowadays there is no rabbi in the entire world who accepts that (child in the eighth month was an “even” a stone) anymore- not one. Anybody who has any condition that can be treated to live 120 years of good health, it absolutely must be done. Now, someone who was at one point in a situation of prematurity and had breathing problems and got better- so when do they leave the status of being called a neifel? So if you accept the 30 day principle no matter what, you have the answer. But if you don’t accept it- that’s a very good question. One of my colleagues was telling a story that he was saying a shiur, and some of the sources seem to say when one turns 20 years old, he loses the status of a neifel. So one of the students came to him and said- I was flabbergasted to hear that- I was 18 and ½ at the time; I was very sick at birth, on a respirator, on an incubator. And I was wondering- am I really alive? But Rebbe, today, I’m 20 years old. So the Rebbe started to cry and the boy started to cry a little bit- I don’t believe the Rebbe meant in that kind of case.

QUESTION: R’ Willig, I want to ask you a question on behalf of hospital administrations- and not focus on our personal realities here and this institution. You gave us a presentation that we understand here because halakha is complicated, but I want to distinguish between questions internal to Jewish community or even the Orthodox community, we decide what particular halakha we want to follow individually or with our local policy issues. But then we have policy issues- although I learned from and enjoyed your administration, the conclusion I would reach is that one shouldn’t consult with Orthodox Rabbis because they will say there are different opinions- if I were a hospital administrator, how am I supposed to respond and administrate

ANSWER: I’ll answer you the only way I know how to answer. If there is a hospital community who wishes to receive input from a Jewish point of view, they should appoint a single individual to answer all the questions (if he accepted this mission impossible)- I’d have to give a yes or no answer; I’d have no choice but to do. So if hospitals want input from the rabbinic world, they should appoint one person to give the input to their questions. There is one institution who has already figured that out- that institution is called Hatzola. They realized they can’t be affiliated with a Vaad HaRabbanim. Every Hatzala to my knowledge in the city of New York has one rabbi in charge. In the community you and I inhabit, that rabbi is me. I don’t hide behind these various names and niceties then- I give them answers. Any hospital which wants inputs from rabbinic world- should choose a rabbi- you are completely correct; in the ivory tower of Yeshiva University, we can talk however we want to talk, but kelapei chutz, we need to talk a different kind of talk.

QUESTION: My name is Eddie ______. I am both a physician and an administrator and I live these problems everyday. Trisomy 18 and Trisomy 13- we’ve had the experience where familes, local Rav- daati leumi family but the local Rav used R’ Elyashiv as their posek and the baby suffered for many, many months. We’ve had middle-of-the-road poskim who have had us give some medication and then stop. We’ve had Satmar dayanim who tell us to feed the baby, comfort the baby, put the baby aside and let Hashem do his work. I bring this up to point out- trying to get staff of hospitals to understand why the same diagnosis of the same baby is treated differently is an enormous effort on our part. I just wanted to add that.

ANSWER: I’ll just add that in this situation, I find myself having a great deal of sympathy for the Satmar position.

Dr. Rabbi Edward Reichman: Psychological dimension, now. Rabbi Kenneth Brander, Dean of CJF- he will be followed by Rabbi Simcha Scholar, executive president of Chai Lifeline.

Rabbi Kenneth Brander: I want to begin my remarks by first of all, thanking the Medical Ethics Society, who I have watched in my office day and night. Want to thank Avi Amsalem, Rifka Wieder, Aaron Kogut, Chani Schonbrun, Yonah Bardos, Carra Greenberg and Aliza Berenholz and in particular to thank a good friend, a person we turn to for guidance, and that is Rabbi Dr. Edward Reichman, with whom we choreographed this during his vacation time and during other time to make this possible.

I’ve had the opportunity to present at the MedEthics Society several times. I must admit to you this will probably be the most difficult of those times. This is more difficult because I have both relatives and a son in this room.

Fifteen years ago on Tu B’Av, had unbelievable blessing of the birth of a daughter. Our third child, beautiful girl, named the baby Chedva, and as I was taking my older son to Gan Izzie day camp that day, I get a frantic call from my wife that our daughter was rushed to the NICU. I wasn’t so nervous about this; I had seen this happen many times- especially in West Boca. I decided I’d make sure that my son would be situated properly in camp, then obviously I’d get over to the hospital. By the time I got over to the hospital, my daughter was a little bit worse; couple hours later, my colleagues were there, one of the Chabad Rabbis brought a picture of the Rebbe to put there- I’m not sure how we handled that, definitely not going to mention it, because we’re on tape. They rushed my daughter to a higher level NICU- my daughter was undergoing ACMO- Extro cramorial ________? Two incisions made in her neck, two made in jugular vein, blood taken out of body, oxygenated, removed of carbon dioxide, warmed and put back – doing the jobs of the lungs so that the lungs can heal themselves. Gifts coming into the synagogue- I’m dealing with the fact that I have a wife who is not strong enough to leave the hospital, children there, living in a town which is beautiful but no family. Social worker coming over and explained to me that should this child live, we would be on government assistance for the rest of our life.

Constant conversation with R’ Hershel Schachter, who was crying as much as I was on the phone, it was clear there was no quality of life- she passed away 3 days after she was born. I remember the nurse and doctor turning to us and asking us, do you have a Rabbi who we can call to help you, and remembering that we were the Rabbi and the Rebbetzin- and amidst this terrible pain of what do you do with two children at home, community that had come together and were saying tehillim 24 hours a day, I wasn’t sure how to be the object of comfort instead of the person used to giving the comfort. Then, conversation with Rav Schachter- we made certain decisions. They were pretty obvious decisions. We buried our daughter; we had a small service in our shul- the whole community was challenged by this experience- we had a night when community came to our home, obviously no type of shiva- I went through the mekoros regarding the recitation of kaddish- one which said not because it is a din of kapparah- another which said the notion of kaddish is for the living, the recognition of the role Hakadosh Baruch Hu plays in every experience, and for that reason I was compelled to recite kaddish with the permission of my parent, for 30 days.

After we buried our daughter, we found out essentially what had happened. My daughter had cupy strep- a bacterial infection passed when the child goes through the birthing canal- it’s passed from the mother to the daughter, and as we read all the material on it, it was obvious that a simple bag of antibiotics, or two, at the cost of $27 would have prepared my wife to have the child and for our daughter to be living and 15 years old today. We read more and more and more and it was clear there are certain basic signs of having beta strep- and my wife had every single symptom that was listed in literature at that time. American College of _______ We did what we felt was appropriate; we went to meet with our OBGYN and we just asked the following question- that in the future, when he has a patient who has all the symptoms of beta strep, that he follow the protocols of American College of Pediatrics. I didn’t go through with you the terrible, terrible pain our daughter went through during her three short days of life- the pain is difficult to share with you.

The OBGYN said “I went into obsteptrics because I don’t want to deal with death, and I have no intention of following the American College of Pediatrics protocols.” He was no longer able to practice because of his response- no one would interact with him. My wife decided that how could it be that our daughter would be alive today if simply for $27 of antibiotics- $27 seems a pretty cheap price to pay in order to make sure your child could be alive. So my wife met a young senator from Florida; his name is Robert Wexler, went to Tallahasee, shared her story, and worked with members of the state legislature and eventually created, with the CDC, practice protocols in the state of Florida for any woman who shows the signs of cruby strep. Because of our loss, she decided she had to do something- would be mandated by appropriate practice protocols to do what should have been done. We received many phone calls from doctors and others that lay people did not have a right to create this- but we then created practice protocols not only for Florida, but practice protocols for the entire nation. To the best of my understanding, in the past 15 years, there has been a 70% decrease of babies dying of this.

For us, the responsibility to do something- people of fate and people of destiny. People of fate asks why do bad things happen and the person of destiny asks when bad things happen, what to do about it. After 120 years, when we would meet our daughter again in heaven, she would be cloaked in the spiritual garb of the activities we would do on her behalf. When someone loses a child, there is never total comfort- you never totally get over it- you just figure out ways of dealing with what has happened. And I think the first way one deals with it is simply making the commitment to memorialize the life of a loved one whom you only knew for a short period of time. Till this day when someone asks me how many children do we have, I’m not sure if I answer five or six. If you answer six, one’s at YU, one’s at MTA, one’s in preschool, one’s in Beruria, one’s at Gush, one’s no longer alive- it’s kind of a conversation stopper. On the other hand, you feel bad if you simply say five. I see Hedy’s here and a few months ago, Hedy asked me to appear in a video somewhere- and I had gotten a phonecall a few minutes earlier that your child is not feeling well- my ability to communicate effectively was totally compromised. You start thinking about the worst case scenario because you’ve gone through the worst case scenario- you’ve experienced the very small chance that this could happen. I think that when families lose loved ones- it’s not like we lost a child we had engaged in for many years; I’m sure that pain is much greater than the pain that we feel- it’s important, or it was important for us, to stay focused and try to achieve something good from the challenge we went through. It’s important for others to realize that you never totally get over that experience, or part of your life. Important to realize that spouses mourn differently. My wife talks about this in a more one-to-one situation; she could never talk in a public forum. We never take our children for granted anymore- we don’t postpone telling them how proud we are of them- we have understood, unfortunately, the challenge of losing a child.

And if one has a friend who has lost a child, don’t wait- don’t ignore- that this event happened. The first conversation might be the hardest- but it’s important to recognize that life might not totally go on- hard to greet a friend after the experience. Simply ignoring that the situation ever happened is the most devastating pain that the family can go through. I don’t have any answers, and there are no answers. It doesn’t mean you don’t recognize that the person went through this very terrible and difficult experience- that too is an appropriate gesture and allows for the second conversation or third conversation to truly happen.

Dr. Pelcovitz, who was supposed to be here today, when he called me on Friday to say he could not be here for very good personal reasons- said something R’ Schwab said that R’ Soloveitchik used to say all the time- that when you want to look at what a word means in the Torah, in Hebrew, have to look at the first time it appears and interpret it the rest of the time in light of that. R’ Schwab says the first time “nechama” is used it means to recalibrate, to refocus- most of the times it does not mean comfort but recalibration, reevaluation. I think that is an appropriate understanding of the word “nechama.” You just find a way to recalibrate your life, refocus your life in a way in which you can go forward. There are moments where you can be fine for a year, a month, six weeks- and then you turn on the television and watch a story and relive the entire event. Nechama means the capacity and courage to be able to recalibrate and refocus your life. And so in conclusion, the messages that I want to leave you with is that I think when a family loses a child, they find a way in which to make it purposeful- finding a way to make sure they don’t become a family of fate, but a family of destiny. They’ll be challenged for the rest of their life of how to deal with the loss of a loved one and recognize that families don’t have answers. Recalibration, and often a refocus of how one engages within their life.

Rabbi Simcha Scholar: After hearing such a presentation, in my career over the past five years, I have made well over 500 visits to children who have died- parents who have lost children. And I tell them over the following story. I had the privilege of learning in the Mir Yeshiva and the Rosh Yeshiva who just passed away, R’ Shmuel Birnbaum, told over the following story with the passing away of R’ Chaim Shmulevitz- when R’ ______ died, R’ Shmuel Birnbaum as the son-in-law went to escort the Aron, the body, to Israel to be buried in the cemetery in Sanhedria. Before the actual burial, they stopped off at the Mir Yeshiva in Yerushalayim- same building where it exists today- and they asked R’ Shmulevitz to give a eulogy. At that time R’ Shmulevitz suffered a stroke- he spoke with a speech impediment when I learned there- he said something in Yiddish which was an incredible statement- “I can’t speak, but I can cry.”

The most incredible thing is to feel like we are one- the reality of life is that pediatric end-of-life issues could really be put into three different categories.

1. There are children who suffer an illness- some illnesses, as we just heard from Dr. Simpser, Trisomy 13- illnesses from which they will never recover- or terminal illness like FD- Familial Dystomia- or cancer- there are 10, 700 children every year diagnosed with cancer in the USA. That’s one type of end of life issue. And these end of life issues sometimes have a very unique type of situation because it goes through a certain process- child that’s diagnosed with cancer. There’s a process, a treatment process, the remission process- there’s hope- there’s defeat- there are people that die around the child and people that survive around the child- with a terminal illness like FD, where they live a very medically compromised life, intellectually they are not compromised at all; they are way ahead of us. It’s a very difficult process; it’s a very difficult trip.

2. Then you have a think in pediatrics called sudden death, or sudden situations. You have a child who has epilepsy or seizures and went through a traumatic seizure and finds himself in an end of life situation. Crib death, heart attacks, etc.

3. Accidental deaths- child at camp falling off a tree, car accidents, boating accidents.

All of these situations carry with it a unique personality, because each and every one, although they might have certain central themes or halakhic themes- each and every one of them carry with it their own individualized, customized, psychosocial traumatic implications. Each one by itself needs to be dealt with in its own prescribed manner. Parents are facing a situation different than others- everyone is its own unique situation. I am going to attempt today to point out certain general rules, certain kellalim- and hopefully it will engender a discussion that will be able to enlighten everyone about the unique situations that one day, hopefully never, but one day you all find yourself in and be able to deal with it in the most appropriate manner.

Let me begin with a question I posed to R’ Dovid Feinstein, the posek of Chai Lifeline- what happens if we know that a parent is making the wrong choice? And I gave him the following example: A child is diagnosed with a life-threatening illness, and we know that Hospital A has world-renowned physicians and the chances of recovery are far greater there, and yet the parents are focused on Hospital B. Community hospital vs. a world-class facility. And we had the communal influence to really press the case. That was the situation. I asked him, what is the obligation.

He told me, obviously you should try to explain to the parents what the situation is and show them as many facts as possible, etc. So then I asked him, if push comes to shove, what do you do? They are obviously making the wrong decision. He said God gives every parent a pikadon- a gift- they are obligated to watch over it. It’s their pikadon; it’s their gift. They have to watch over it. Whatever decision they make, you have to support it. Now, this is a situation where we’re talking about being proactive for treatment- how much more so is it in the end of life situation.

I will tell you, I’ve dealt with a couple of hundred families at Chai Lifeline, in the past couple of hundred years- from different parts of the community- and there are many divergent opinions about end of life. Some that make a lot of halakhic sense, some that I am still questioning. It runs the gamut from letting fate take its place to being proactive. And there are those individuals that are extraordinarily passionate about a particular opinion, because they have researched it, come to their own conclusions- they believe it is 100% wrong to keep someone artificially alive- and the confrontation that happens in the most sensitive cases is sometimes so critical- let me describe to you something: There was a young girl, I believe she was 10 years old. She had a significant seizure disorder. Something happened, could have been a mistake by one of the volunteer medical groups- in a healthy child this child became questionably brain death in a significant family. These people happen to have been from a certain Chassidic group, and until they focused in on which posek they were asking- someone in Israel, R’ Wosner, not R’ Elyashiv- difficult to get through to him- they were just leaving this child be and they asked the hospital to just proceed with active treatment, let’s say. There was a doctor who walked in who was incensed about this- what he considered to be an unethical situation- and at one point he actually screamed at the father to just let her go already.

I explained to the head of the hospital so they became more aware- within two weeks this child unfortunately expired- the point being that we can be passionate sometimes about opinions but when we are dealing with such a sensitive situation, we need to be passionate about people; we need to respect sometimes people, not necessarily opinions. And as we heard from Rabbi Brander, children are not supposed to die- we need to understand that there are differences of opinion and respect differences of opinion. Though most medical facilities today are open and understand- one medical facility actually wanted an Orthodox opinion- in-service with five Rabbis. The reality is that when you’re in a situation of an end-of-life situation and when you come from the Jewish community and we have to be able to respect all of the situations, and sometimes even with education, which is critical for the hospitals and the physicians- I will tell you a very interesting story I shared with Dr. Simper (Simson?) before: They had a young baby girl who had this unfortunate chromosomal disorder. It was devastating. The husband and wife did not deal with it properly, as is unfortunately the case. The husband was dealing with it far, far better than the mother, who refused to come to the hospital. When the end was near, the hospital asked them to come down, and they came down- finally after coaching the mother walked in, the baby was already dead and the social worker said maybe you want to hold the baby, then maybe you want to kiss the baby. The father freaked out- it’s assur, it’s assur, it’s assur. Truth is there is a difference of opinion about this.

If the nurse would have known that, the social worker would never have offered it- they would have been very respectful of it. The more we educate others, the more understanding they will be of it. Bereavement is not a situation; bereavement is a process. There are no two people who mourn the same. Everyone does it on their own individual basis- I know people who come to our bereavement sessions, five years later and they still have not cleaned out the room- is that a problem, maybe, maybe not- to be able to prepare a family for what is the inevitable, to be able to give them the appropriate strength for what they need- not just the mother and the father but the siblings and whoever else is part of it. Some of these people have gone through a real trip together- this child has been sick for a couple of years. Some of these people had a healthy child and there was an accident. We need to have a pre-bereavement process so that when the inevitable happens…We have to deal with difficult philosophical questions- on the one hand, this child is going to die, and on the other hand, people can pray for a miracle. Gemara that Rebbe suffering from terrible stomach disease prayed for his death. But clearly one can pray for God to do whatever needs to be done. Everyone needs this pre-bereavement process; everyone needs to be prepared for the inevitable. It falls upon those who are trained in the community to be able to create this safety web.

A Rabbi told me- a Rabbi of major community in Queens- his wife is part of Chai Life crisis team. He told me that he lost his mother 40 years ago- and he bothered his Uncle to tell her where did my mother die? He never had closure; he was a little kid- no ability to say goodbye. For forty years it bothered him- and here you have an intelligent Talmid Chacham, and forty years he couldn’t deal with it- no safety net around him when the tragedy hit. And how much more so when it is a child. The greatest, most significant, emotional problem that parents who lose children face post- is guilt. Guilt. I should’ve, I could’ve, I would’ve. Guilt. In our experience, if the appropriate pre-bereavement process is done, and there’s an appropriate safety web, and the reassurances that people have done whatever they need to do- usually that guilt factor is minimal. But this is a real, real important situation. So we have to realize, my good friends, that every parent has a pikadon- has something which they are entrusted by God to watch- we have to realize there are different opinons; some that we agree with and some that we don’t- and a person has a right to make that decision and we have to respect that situation. We have to involve the other children in this process and the other family members. We have to make sure the parents do what is best for the child- not what is best for themselves.

Talk to the hospital and caregivers about what the specific situations are- most of all, no guilt. You’re doing what’s right- this is what the halakha says- this is what Hashem wants- this is what God is telling us to do- this is the right thing to do- tragedy is not easy; death is not easy- you’re doing the right thing. Thank you.

Rabbi Dr. Edward Reichman: Want to thank you all- perhaps more questions were asked than answers given. One thing I think we all realize is the importance of this topic- percentage of people who stayed for this entire conference is a testimony to that fact.