For the last six years of her life, my mother was incapacitated, lying in bed on a feeding tube in a quiet corner of a nursing home. Beyond her room, a battle raged.
As
infections and issues cropped up, the doctors begged us to not pursue
aggressive treatments. They said she was already a sick woman and she needed to
go. We, however, are Orthodox Jews. Based on consulting with our rabbi, we
generally pushed for the same treatment that would be given to any other
patient, and the fight went on.
Such
an experience changes your mindset. Here is how it improved mine.
A
Matter of Outlook
Some
would look at the doctors as heartless, only concerned about money and looking
at my mother as a waste of resources. Others would look at us as pigheaded and
shallow. We were wasting our money and energy when there was already no hope. I
see it differently. These were two compassionate, sensitive parties, trying to
navigate an extremely tough situation from vastly different mentalities.
In
secular society, what matters is not life, but quality of life. Life is meant
to be enjoyed and relished, and a life without enjoyment is nothing. Keeping a
woman who is incapacitated and depleting resources alive isn’t only wrong –
it’s cruel. As much as the family would emotionally like to hold on, they must
come to terms with the painful facts. Their loved one is no longer enjoying
life, and the family’s money and emotional energy would be better spent
elsewhere. The doctors who pushed us to move may not have had only financial
interests in mind. Perhaps they had my mother’s potential pain and our
emotional well-being as well.
However,
religious Jews have a different picture of life. Life is about spiritual
accomplishment, becoming part of G-d’s plan to perfect ourselves and the world.
From that frame of mind, no life is insignificant. There is not a single moment
that cannot be used to perform a mitzvah, creating eternal effects.
Starting
from a short time into her illness, my mother was badly impaired, hardly the
picture of accomplishment. However, those who followed my parents during those
trying years would see clearly a world of accomplishment.
As
the disease progressed, my mother lost most of her abilities and, arguably, her
free will. Along with them went her inhibitions. How she acted could not have
been to impress others or gain – she didn’t have the capacity to think that
far. It came from a very deep and ingrained place – a place that we all have
but are too concerned with looks and propriety to get in touch with. And what
we saw was beautiful.
We
saw a woman who still clearly believed in everything she believed in before.
She had the same dedication to her ideals, the same passion for Shabbos, prayer,
and Judaism. We saw her love and care for our father and for us. And we knew,
because of her state, that what we saw wasn’t a show – it was real.
Even
after she became completely incapacitated and could not walk, talk, or show us
her dedication, she became the catalyst for so many others to grow: My father’s
dedication – making daily visits to a woman who did not know he was there –
showed again how deep a marriage can go and the honor that every individual
deserves. Our community stepped up to the plate time after time to be there for
our family. And our family itself grew and pulled together in ways we had not
previously imagined.
Navigating
Confusion
But
even as Jews, can we be sure that the doctors were wrong? We speculate and
attempt to explain G-d’s actions and why He causes tragic events, saying that
tragedy pushes us to grow. But it is still tragic. She seemed to be in pain,
and you would need to be sick to “grow” at someone else’s expense. Perhaps this
was not meant to be an opportunity for teaching dedication and giving. Perhaps
it was a test if we would put the suffering of another above our emotional need
for closeness. Would we have the strength to properly move on, when we so badly
want to stay in the past?
Then
again, it was unknown if she, in her state, felt pain or distress. We could not
communicate with her or know her wishes. If she did not wish to die, would
denying treatment not be close to murder? Do her “wishes” actually matter?
Acknowledgment of divine law and purpose does not always remove murkiness, it
often exacerbates it.
However,
we believe that G-d left us instructions. The Torah gives us guidance on how to
keep Shabbos, how to pray, how to put on tefillin,
and how to balance our personal interactions. The same Talmudic sources can be mined
for direction in end-of-life decisions. Just as we would handle questions
regarding kashrus in the kitchen, we
contacted a rabbi, who referred us to a couple of experts in the field. And
with the compassion we would expect of a father and the precision that we would
expect of a surgeon, they evaluated the situation and advised us from a halachic
perspective what the right actions would be. We made the decisions using the
same protocol we use in every part of our lives.
Finding
Peace in Our Tradition
I
know the stereotype of how rabbis deal with end-of-life matters: Death must be
avoided at all costs, and pain and suffering are not factors. Any and all care
must be administered to keep patients alive no matter the state they are in.
Peace of mind of the patient and family are not part of the equation. We do not
give up and we do not let go.
This
could not be farther from our experience. I cannot and will not mention the
details. Each situation is different, and for a novice to extrapolate is
dangerous. However, I can say that the advice and decisions made took
compassionate factors into account, and we were not afraid to unapologetically
let go when the time was right. Emotion and pain were vital factors in the
decisions, but so was the sanctity of every moment of life.
As
for the peace of mind of the family members, I will never forget a line spoken
by my brother. We opted to perform a delicate, lifesaving procedure after
intensive consulting with a rabbi. While waiting nervously for the results, we
wondered what others would do in such a circumstances, when they do not have a
protocol to follow. “I assume they make the best guess,” my brother said, “and
I am sure that there are times when it haunts them for the rest of their
lives.”
The
doctors pushing us in the other direction had their own protocol. These were
professionals dealing day in and day out with pain and death; they were experts
in their field trying to navigate the new moral challenges that medical
advances have created. I am sure that they were striving to do their best with
the current information and philosophy to make the right decisions. However,
history is littered with ideas that seemed progressive at the time and horrible
in hindsight. From the rise of mental institutions in the 1700s to eugenics in
the 1930s to the questionable psychological experimentation that occurred
during the 1950s and 1960s, we are reminded of the limits of our intellect to
make the right choice. We need to reach out to G-d.
By
following halacha for end-of-life decisions, we did not feel we were being
controlled or “trapped” by an ancient creed in a modern world. On the contrary,
we gained direction and peace in a world that is ever more complex than the
past via a tradition that has lasted millennia. Time and again, ideas from that
tradition that seemed temporarily outdated proved themselves prophetic and wise
only a few decades later. We, and the rabbis who applied them, also did the
best we could to understand G-d’s will and plan in this tough situation. We made
principled decisions that my mother would have been proud of and that, I
believe, she was happy were made when she reached the next world. And it has
given me peace in a way that is rare to find in our modern and confusing world.
As
Jews, we have a treasure. Let’s use it.
Yehoshua Goldfinger is a Baltimore native
who learned for 10 years post-high school and has spent the last decade working
as a software engineer in defense, logistics, and now finance. He loves
bouncing the ideas he sees in both worlds off each other. He still lives in
Baltimore with his wonderful wife and five terrific kids. This piece first
appeared on his Times of Israel blog at blogs.timesofisrael.com/author/yehoshua-goldfinger/. He can be
reached either through his blog or at yehogold@gmail.com
