When one refers to terminal illness, the first word that usually comes to mind is cancer, a frightening thought. But many cancers are not terminal, and illnesses such as emphysema and kidney or congestive heart failure may also, at times, be included in the realm of terminal illnesses.
When dealing with a family who has received the devastating news that their loved one – child, spouse, parent, or any other family member – has been diagnosed with a terminal illness, hope must never be taken away from them, as gloomy as the caring physician may paint the picture. We must be realistic, but we must also always be hopeful.
A nine-year-old girl from Israel had been brought to New York University Hospital to have brain surgery by the renowned neurosurgeon Dr Fred Epstein, of blessed memory. Being very close to the family and knowing that they were limited in their command of English, I flew from Milwaukee to be with them during this stressful time. After many hours in surgery, Dr. Epstein called the family and me into his office and described what he had done, and said that that for the time being, the surgery was successful. When I asked Dr. Epstein what odds he gave this child for a full recovery, he replied “fifty percent.”
I looked at him quizzically, and asked, “What is fifty percent?” He replied matter of factly, “Rabbi, it is better than ten percent.”
Today, some 15 years later, this young girl is married and lives in Israel. We must always remember that where there is life, there is hope.
Being realistic means accepting the fact that there are cancers whose treatment and outcome are devastating. Over the years, I have discussed with many poskim what a patient must go through to achieve a cure. I was consistently told that where it involved experimental treatment that causes the patient untold pain and discomfort and there was no guarantee of cure, a rational patient has the right to refuse such treatment. Though in no way do I encourage this, it is interesting to note that I have seen patients who have refused chemotherapy live longer than those who went through chemotherapy treatment.
I recall that in the early years in my profession, I would feel that a patient had to go through every possible treatment to fight the malach hamaves (angel of death). This malach, who wants to take away life must not be given an easy victim. I felt that one must do everything to fight him. Thus, one must always use a ventilator, one must always do CPR (cardiopulmonary resuscitation), and one must never turn down any type of treatment. However, when I discussed this with Rabbi Yaakov Weinberg, z”tl, he said to me, Tsvi, it’s very nice, but on somebody else’s pain and suffering you are fighting the malach hamaves?”
It is common that when such tragic news is discussed with a family, their immediate reaction is one of devastation. Feelings of disbelief, fear, and anger all come to the fore. A caring friend or family member must be aware that, among adults and children, feelings are expressed in numerous ways. It is not uncommon to find that, although the majority of the family is tzebrochen (shattered), there is one individual who remains strong and may be able to encourage and give hope to the rest of family.
When a family member of mine, may he live and be well, was diagnosed with cancer, I personally needed someone to go to. My heart was heavy, and while I knew that there was always the possibility of a cure, I feared the worst. I would not go to my parents, who also were in terrible pain. One rav, with whom I am very close, had himself lost a son-in-law, and I did not want to burden him. In desperation, I went to one of my rebbeim in Baltimore and opened my heart to him and cried – not only for the member of my family but for so many patients with whom I come in contact daily, who are struggling to fight this dreaded disease. I was very moved that this rav, whom I view as a gadol baTorah, put his arm around me and held me while I cried.
At the same time, we must be aware that there are occasions when the rav or rebbi needs a shoulder or support of a chaver or loved one.
The Limits of Being Strong
Being strong does not make someone a titan or hero. At times, in fact, it is foolish to act this way. A young woman who underwent a difficult delivery lost her child soon after birth. I saw the father in the hospital corridor. It was obvious that he was acting very strong for his wife, yet I saw that he was hurting. I confronted him and said, “You have to be hurting. I know what it’s like. I too lost an infant.” He looked at me and started to cry. I took him around and held him.
When a family or individual is shaken up from hearing devastating news, it is not the time to say, “Everything will be okay.” The approach should be that the Ribono Shel Olam (G-d) can help. And with His involvement, everything will hopefully be all right.
It means a lot for the family to know that people are being mispallel (praying) – not only that their terminally-ill loved one be granted a refu’a shelima (complete recovery) but also that the Ribono Shel Olam should give them chizuk (strength) to deal with this challenge. This is even more meaningful when the family rav asks for the name so that he, too, can be mispallel. One should never underestimate the family’s feelings of gratitude when they hear that “we are davening for your loved one.” A rav and or rebbi is not only a teacher in the community but is, in a sense, a parent and a shoulder for many as well, ready to support his kehila, his talmidim, and the extended acheinu bnei Yisrael (Jewish brothers) when needed.
When I was sitting shiva, I drew much strength from the fact that a very busy rav called me quite a few times to see how I was doing and to let me know that he was thinking about me. Even though we all realize how busy people can be, it can still be very hurtful when one with whom one feels very close does not call and only comes to the shiva the night before the family gets up.
While a rav might feel differently towards various balabatim, when tragedy strikes, he must reach out to all alike. A rav I know never visited hospitals because it was difficult for him to see people who were sick. How sad I felt that he had chosen this avoda (divine service). Eventually, he was removed from his position. For many individuals, visiting patients in nursing homes is very difficult – perhaps because they are forced to face their own mortality. What greater time to fulfill a challenging mitzva then when people are in those facilities.
Touching Base with the Physician
Often, when a family hears frightening news, they are not able to digest everything that the medical team tells them. It is not necessarily time for friends to get involved with the physician and his staff, who may perceive this as an intrusion. It is proper, though, if the rav feels close to the family, to request the family’s permission to speak with the physician and clarify the issues involved. It is also a wonderful opportunity for the rav to give encouragement to that physician, not only regarding this case but in relation to everything else that he does. There are certain physicians whom I call before the Yamim Nora’im to wish them well and express my bracha that Hashem endow them with the gift of being able to cure all the patients who come to them.
It is also important for a rav visiting a patient to be aware that, when the family is present, the ill person my not want to discuss certain things, so as to spare their feelings. There will be times when the family may want to speak to the rav out of earshot of the patient as well. The rav must be aware that each of them has his or her concerns and needs and that, often, the patient and the family want to protect each other from any type of hurt.
If and When I Die
When a patient requests of me, “If and when I die, please tell my family certain things,” I advise them either to write some type of “Iggeres Haramban” or to record their feelings. I tell them, “After you do this, if you want to entrust me with the document or recording, I will be glad to give it to your family at the appropriate time.” I do encourage the patient, though, to express feelings of love and gratitude to his family, now, while he can still do so personally, and not just wait for the family to hear or read it after he is gone.
Whether a patient should be informed of his impending passing or not is an in-depth discussion, not for this article. Those involved in the care of a terminally-ill patient should be aware, as should the physician, that the family knows the loved one better than anyone else. If, in fact, the family feels that this information might discourage the patient and hasten his demise and, in a sense, take away his will to live, then the patient should not be informed. We have to be aware that many times, when we try to hide the truth from the patient, the patient knows very well what the truth is.
One must be aware that, legally, if the patient asked medical personnel to tell him the truth and he is rational, it may not be so simple to be evasive. At times, there may be things the patient wants to say or do, and he may only be able to do so if he knows that time is limited. But again, I emphasize that, though time may be limited, hope should never be relinquished. I remember when a very close, younger friend of mine was battling leukemia. I spent much time with him in the hospital, and it was obvious that he was failing. While standing in the hall, a physician approached me and said, “Rabbi, I know that you are very close with CB. Let me tell you that he only has a few hours to live, as he is bleeding internally.” I entered the patient’s room and said to him “Reb Chaim, how about saying Vidui together with me?”
He asked me if it was time, and I told him that that physician believed so. He immediately called our rav – at the time, Rabbi Michel Twerski – who brilliantly, responded, “You should say Vidui today, tomorrow, and for 120 years.”
When one is confronted with a family whose child has cancer, there are a lot of questions; it is a devastating time for friends and family alike. The child’s neshama is so pure. We have to emphasize to the family that Hashem is a loving father. We don’t know the reasons for tragedies and challenges in life. One must realize that, while people tend to question Hashem in difficult times, this in no way reflects a character defect. They are simply being human. As difficult as it may be, we must always accept the decrees of our Creator, despite having questions. A family should be encouraged to put their full trust in Hashem, and to understand that, while anger at times is normal, nothing can really be accomplished without Hashem’s intervention.
Improvements without Guarantees
I found it very helpful when a rav recommended taking on certain mitzvos during my family member’s illness. He did not guarantee anything but explained that it elevates those involved, and never hurts. There are opportunities to accept many neglected mitzvos, such as Melave Malka, coming to shul earlier, staying until after the last Kaddish, or not talking in shul about business or any mundane issues. For women, bentching licht on time; spending quality time with children; being involved (if family time is not sacrificed) in bikur cholim, etc. There is always something one can take upon oneself in which merit a loved one may have a complete recovery.
A five-year-old child had come to Milwaukee after being hospitalized in a New Jersey hospital for leukemia. I recommended that the child be brought to Rabbi Michel Twerski for a bracha. Not wanting in any way to mislead the mother, who was not religious, I told her that she should not be disappointed if there was not cure after this bracha. Yet receiving this blessing would elevate the neshama, the soul of her beloved child. I explained to her that receiving a blessing from this very special rabbi would be merit for her as well as for the child.
How often do we daven by rote, just saying words? We do not always have proper kavana (intent). When we have to plead for something, we awaken, and tefila begins to really mean something. Without bitachon (faith), we would not be able to deal with life’s challenges.
Fifteen years ago, I was visiting with Rabbi Shach, who had many colleagues and students who had come to Milwaukee for open-heart surgery. I told the gadol hador that I was burned out and that I did not think that I would be able to do this work (of patient support) much longer. Rabbi Shach looked at me and asked, “Do you believe in Hashem?”
I replied, “Most certainly.” He asked if I strived to be a ben Torah. I replied that I try. He then uncharacteristically pounded his hand on his table and said, “You are doing Hashem’s work!”
We must always remember that, whatever we do, we are in fact doing Hashem’s work.
Rabbi Dr. Schur is Jewish chaplain at Johns Hopkins Hospital, and author of Illness and Crisis: Coping the Jewish Way (ArtScroll) and Moments o
