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.