Taking time to say goodbye

By
September 25, 2011 04:32

Little did I know at a "Coping with Death" seminar I covered for the paper that four years later my husband Nahum would suffer from a terminal illness.




PROF. BEN AND DVORA CORN

PROF. BEN AND DVORA CORN. (photo credit: Ola Vinogradski)

Home hospice care? End-of-life emotional support? Caregiving? Never having taken care round the clock of the needs of anyone except my babies and young children – and married to a vocational and educational psychologist who counsels others – I thought that some patients are terminally sick and, given painkillers if necessary, die in the hospital.

Little did I, the country’s most veteran health and science reporter, know at the Jerusalem seminar held by Prof. Ben and Dvora (Phyllis) Corn that I covered for the paper, that four years later my beloved husband Nahum Itzkovich would tragically suffer from a terminal illness. Complications from an autoimmune liver disease suddenly appeared, bringing a sudden end to his 30-year vocational guidance career at the Jerusalem office of the Israel Employment Service that peaked just weeks before, as its new district psychologist.

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Who would have thought that I, who loves all theoretical aspects of medicine but dreads the sight of even an hypodermic needle, would with our children take care of him at home all by ourselves during the last three weeks of his life?

Not many people in the prime of life contemplate their deaths beyond, perhaps, buying life insurance. We didn’t either. Although catastrophe can strike at any moment, death is too lugubrious a subject, they would say. Life is short, so why think of such things?

The Brooklyn-born Corns – he the director of radiation oncology at Tel Aviv Sourasky Medical Center and she an occupational therapist who earned an advanced degree in family therapy – think about death all the time, even though they are the parents of four young adult daughters and are themselves young grandparents. Death is familiar enough for them to discuss it with their family over the dinner table. It is more than an acquaintance; it is a permanent presence.

Together they founded Life’s Door (Tishkofet, or “Perspective” in Hebrew) and manage Ma’agan, non-profit organizations specializing in helping individuals and families with chronic, serious and terminal illness and bereavement. For their work, they received early this summer the President’s Volunteer Prize from President Shimon Peres. Without the absolutely devoted counseling by Dvora, the organization’s executive director, and the backing of Ben, Tishkofet’s chairman, I don’t know how we would have managed to get through the agonizing nine months since Nahum’s illness was first diagnosed.

Ben was 11 years old when his father died of prostate cancer at Memorial Sloan- Kettering Cancer Center in Manhattan, across the bridge in Flatbush, Brooklyn, where his school principal mother lived with his 13-year-old brother and eight-year- old sister. The father’s absence from home was explained away by “frequent business trips,” and the children were never told. That’s the way it was in American society. Despite the best of intentions, people simply did not have the tools to deal with such tragedies. Kids weren’t even taken to funerals. On the seventh day of Passover, an emergency phone call informed them that he was gone. There was no preparation, no goodbye, only shame and grief.

Phyllis Kranz (Dvora) lived only blocks away in an observant home. Her paternal grandparents were Holocaust survivors. She was only six years old when her grandfather died of disease. “We were very close. Nobody talked about it. It was very disturbing and shocking for me as I grew up,” Dvora recalls. “I understood later how much pain my grandmother held on to – so many losses among her family in Europe and then her husband in America. I realized later that she had just wanted to protect us.”

I learned only months ago that I, too, lived within walking distance of both of their families’ homes during those years when I grew up in Flatbush before my aliya, and that Dvora was even a good friend of a cousin of mine.

Dvora met Ben, who almost from their first date was introduced to end-of-life issues. At a young age, the modern Orthodox teen decided to go into medicine, as his sister did, because of what happened to his father. Later he chose to go into oncology. “When I started hearing about such matters from him, it was refreshing. I had never discussed such things and was drawn into such conversations,” recalls Dvora. “His experience from his father’s death was much more raw and clearly more traumatic than mine with my grandfather.”

They married in Boston in 1982, the day of the Sultan Yakoub battle of the first Lebanon War. Brooklyn native Zecharia Baumel was among the Israeli soldiers captured and never seen again. It also turned out that Nahum and I, introduced thanks to then-president Yitzhak Navon, married in Jerusalem a month after the war broke out, with Navon reciting one of the seven blessings under our huppa. Our wedding was held within only days of Dvora and Ben’s.

The Corns lived in Boston for five years and had two children, then they moved to Cherry Hill, a suburb of Philadelphia, for his residency in radiation oncology at the University of Pennsylvania’s School of Medicine and had two more. In Cherry Hill, they both trained and volunteered for the Jewish burial society, preparing the bodies of the deceased (she of women and he of men) for the first time. “I saw a cadaver in occupational therapy school,” Dvora recalled. “But preparing a body in the Jewish ceremony of tahara is not like seeing a cadaver. The attitude is different. It’s an honor to do this work. There is holiness about it. One thinks of the person’s soul and even apologizes afterwards to the deceased for any hurt or insensitivity which may have been displayed. You begin to internalize the importance of how one should care how one acts with people who are alive if one is so careful with people who have died. I got more in touch with life and death, and, surprisingly, I had no nightmares.”

At Thomas Jefferson University, Ben was at 36 the youngest-ever professor. Dvora launched a private group therapy practice in occupational therapy specializing in geriatric and long-term care that blossomed and sold it to a large health care company.

Always having aliya in the back of their minds, they went to Israel in 1997 for a sabbatical and stayed, settling in Jerusalem. Dvora volunteered at Hadassah University Medical Center’s hospice on the Mount Scopus campus and received a master’s degree in family therapy. Ben worked for five years in a high-tech company, and then Sourasky director-general Prof. Gabi Barbash offered him the job of heading a new department of radiation oncology. Today, Ben has almost attained the age of his father when he was cut down by cancer.

“WE WERE thinking about establishing a non-profit end-of-life counseling organization.

There was nothing like it,” Ben remarks. “We thought of calling it Life’s Door based on Bob Dylan’s song ‘Knocking on Heaven’s Door.’ We thought that if people knock, even at such an event, patient and loved ones would be able to live life more fully. Don’t deny it. Use serious illness as a trigger to look into life.”

The couple started the organization with their own funds and continue to be among the many supporters. “But most people we encountered were very put off by the subject. It wasn’t accepted to talk about death. Gradually, these attitudes have begun to change,” Dvora notes. “The United Jewish Appeal – New York Federation initiated spiritual care in Israel for patients and families. Not all had terminal disease; some had serious, life-altering, chronic illness that had an impact on the way they lived. Tishkofet's flagship program is their Partners for Life Retreats. Life partners (husbands and wives) or two close relatives, one of whom is ill, attend several days of workshops and programs together. Sometimes both are sick. After learning to cope, they return to their world as a team, stronger and with new skills.” The two-day retreats, now in their seventh year, were launched with seed money from the UJA-Fed. NY (which still gives a grant every year) and a gamut of types – religious and secular of various ages and relationships – attend. Nobody is turned away.

The Corns decided that the Life’s Door- Tishkofet program would be spiritually based but not reserved for organized religious groups; groups of rabbis, however, are involved and have undergone training.

Under a new Tishkofet venture philanthropy initiative, ATID, partnerships are made with workplaces and businesses concerned about employees with illness in their lives or the lives of those dear to them. ATID business partners benefit from a pro-active approach toward creating healthy and effective communication at work which can harness the power that facing illness can offer. Recognizing the fact that people dealing with illness can suffer reduced functionality, Tishkofet offers a team building workshop program which encourages collaboration and support.

“In the end, we hope to prove that workplace productivity will be enhanced by our program,” Dvora explains.

Twenty organizations funded by the UJA have formed a Jewish spiritual care network, and some 50 Israelis have been trained to work in hospital and retirement home settings. By 2013, all the organizations involved must meet new internationally based standards as spiritual care providers.

Tishkofet also manages Ma’agan, which was set up by the Israel Cancer Association 14 years ago, and became independent prior to entering into its current connection with Tishkofet. Now the two NGOs operate with total collaboration in an integrated, comprehensive system. When a seriously ill patient enters the Tishkofet- Ma’agan system, an individualized plan is created which includes individual and family counseling and spiritual care, a wide range of support groups and retreats. Tishkofet has trained some 140 volunteers nationwide who undergo training by Dvora and her staff. There is a special Russian- language group aimed at former immigrants who have no family in the country and are afraid of the healthcare system and dying alone. There have also been groups in the north for the Arab community.

“We depend on contributions, mostly small donations, and get no government funding, but at this point we would be willing to get state aid to expand,” Dvora, says. “After the High Holy Days, we will use a new grant to launch a new program which will study models of our care delivery and look at outcomes.”

She relates that Ben “hardly sleeps” because he has so much to do at the hospital and for Tishkofet. Ben was the oncologist at Sourasky of Adi Talmor, the Army Radio veteran who flew recently to Switzerland to die by active euthanasia after feeling that he had nothing to live for after contracting terminal lung cancer. Talmor had long talks with Ben, but never breathed a word to him that he was planning such an end.

“It was very sad. It was painful for me that he didn’t let us hear him. It’s such a lonely place, even if you have people around you. The terminal patient knows he will leave, and others will remain. Adi Talmor apparently felt he couldn’t have the conversation about choice. It is tragic that he was so alone,” Ben says.

The Corns regret the fact that the state law on the end of life, passed after much deliberation by a public committee, has not been fully implemented. “There was to have been a national repository of living wills, but it doesn’t yet exist. Nobody is responsible or it. People can write their own living wills declaring if near the end of a terminal illness they agree to undergo resuscitation or not and make other decisions, but this has not been institutionalized. Nobody set aside a budget,” Ben notes.

“The committee was comprised of the best people, but somewhere along the line, the process of putting the law into practice was frozen. Every hospital was to have its own end-of-life ethics committee. There was to have been a Shabbat-timer-like device so that suffering people who are aware of their situation could have ventilators automatically turned off if they chose, but it was not implemented. Nobody put the wheels in motion.”

DVORA PERSONALLY provides individual counselling on serious illness, end-of-life and bereavment for Tishkofet – through which our family received her emotional support during Nahum’s illness. Her assistance when our lives were turned upside down strengthened and encouraged us as we cared for him at home during his last three weeks. I never thought we would be able to do it.

When Nahum underwent periodic and painful treatments in a hospital inpatient ward, I witnessed terminally ill inpatients whose families felt they couldn’t handle them at home lie in their hospital beds and cry out for help. A doctor or nurse was not on hand at all times, and when medical staffers appeared, they inserted thermometers, drew blood and changed infusion bags. I couldn’t bear the thought of my husband ending his life in such a setting.

Ten days before the end, Yitzhak Navon called our home and asked to speak to Nahum. “I am 90 years old, and I have seen a lot. There are miracles!” the former president told him over the phone, giving him a boost of hope. Other friends and even strangers called when they became aware of the situation and revealed how much Nahum – by counselling them on their career course – had made a lasting impact on their lives. Remaining at his job until those last three weeks, he insisted on “business as usual” and continued to make his contribution to Israeli society.

Having Nahum at home, we felt fortunate and privileged to meet his every need, even near the end when he couldn’t make requests or say thank you. His end of life would not be like that of a friend I knew years ago who collapsed and died of a heart attack in the street. By chance not carrying his identity card, the unfortunate man’s family members were not called immediately. They had no opportunity to say goodbye.

We received emotional support night and day from Dvora, and medical assistance was available round the clock, if necessary, from a gentle and kind visiting family-and-palliative-care physician and a male nurse team from a company working for our public health fund. Nahum faced every setback with courage. And seemingly as a reward, Nahum suffered no pain; there was no need for me to add any morphine to the infusion bag. Even near the end, when he could not join us at Shabbat meals and was in a state of reduced consciousness, we ate with him in the bedroom and sang songs – and he, incredibly, joined in. He remembered the words for Woman of Valor and serenaded me. He even smiled. It was a tragic, wrenching but bittersweet end.

A wonderful, involved father, Nahum had often left notes for our children as they grew, listing their best qualities and declaring how much he loved them. “I ask the parents among you,” our daughter wrote in a message read at the funeral, “to adopt this habit. Write messages periodically to all your children or at least tell them in person how you love them, how proud you are of them. There is nothing that builds personal strength and strengthens their character and self-confidence more than this. And when I say ‘child,’ I mean even those who have reached 50.”

It is unfortunate that more families in our situation are completely unaware of the home care option or rule it out without understanding its potential benefits, including intense closeness and a total absence of guilt about not being there or not doing enough. We had also saved the health system a significant amount of money by deciding against end-of-life care in a hospital whose staffers are overburdened and whose wards are packed with patients.

Shaare Zedek Medical Center director-general Prof. Jonathan Halevy – delivering the main eulogy – said that perhaps five percent of the families in our situation provide hospice care themselves at home.

There is no doubt, he said, that Nahum was well aware of being surrounded by love.

ON AVERAGE, Dvora counsels a new family every two weeks – and when the patient passes away, she stands with the survivors during the funeral and beyond. She also provides counseling privately in matters not involved with terminal illness. The organization has supported thousands across Israel and has begun to provide seminars around the world.

“I always cry at funerals. As a caring professional, you should cry if you feel touched. I want our volunteers to show it. I don’t fall apart at a funeral, but when there is something tragic, I am not afraid to reveal it,” the therapist notes. “Those who passed away were human beings, and especially when you see them struggling with pain, I can get angry with God. But I don’t lose faith in Him. I believe in spiritual life. I feel the presence of people who are no longer here. When people believe in the World to Come, it can be a very big comfort. I don’t offer it as a solution for everybody. But for people who have this belief, it can have much meaning.”

Dvora adds: “The Torah does not give many details about what happens after death beyond the Resurrection of the Righteous when the Messiah comes. It seems anthropomorphic, but there is clearly a spiritual order. The bereaved who want to have a ‘conversation’ with their loved ones can go ahead and do so, as I think it’s healthy. It says the person still has a presence. It can be healthy to the process of grief. One can also make decisions thinking what the person who is gone would think. Visiting the grave often – if it doesn’t interfere with the bereaved person’s functioning – can be helpful.”

The process of intense or incapacitating grief can take six months to a year, or even more. But if this continues past 18 months or so, professional intervention should be sought, she asserts.

“There is a spiritual existence beyond our understanding. It is amazing to me that in molecular biology, there are things we can’t see; the spiritual world is the same. I am sure there is something. What happens is not an accident or random. It must be guided by a Spiritual Being. Things happen because they are supposed to happen for better or worse. There is a system that we humans do not understand.”

During all parts of my husband’s funeral, Dvora was there with us; on that Friday, she had attended another funeral and made a shiva visit as well. “It’s very important for me and others to go to funerals and be part of the family’s journey. Of course, a funeral is sad, but it can be very inspiring what you hear about the person as he lived. The connection with the family doesn’t end there; it can be forever if need be.”

Young-looking and vital, Dvora says: “I don’t take it for granted that I will live forever.

I think about the next few months at a time. I plan my life, but in the back of my head, I think what I should be doing with my time. I definitely think of the way I would want to die. Every moment should be informed by this. Don’t waste time. I can go on vacation, sit back with a good book or go to a concert, but I choose them because they are important to me. Time slips away.”

To mark the Shloshim today of Nahum Itzkovich – my husband, our father, our grandfather and my brother. We want to thank the Corns; Prof. Jonathan Halevy and his Shaare Zedek team of devoted, skilled and empathetic doctors and nurses; home hospice physician “Dr. Simcha” and nurse Wassil; and Yitzhak Navon, from the beginning to the end.


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