The formal diagnosis
of ovarian cancer was confirmed after seven hours of
surgery at Boston’s Brigham and Women’s Hospital. Prior
to receiving that devastating news, we were in the land
of possibilities, probabilities and suspiciousness in
large measure due to the inconclusiveness of blood
tests, ultrasounds and CT scans. Cancer never
strikes at a good time, but for us the surgery occurred
at a particularly poignant moment, July 27, 1969, our
twentieth wedding anniversary.
For the next five
and a half years, Sandra and I struggled with hope,
disappointment, fifty hospital admissions, two other
major surgeries, countless minor procedures, and two
changes of physicians. And throughout these years, until
her death on October 13, 1995, we had to function as a
family, work, pay bills, go to school, be effective
parents to our two teenage sons and assist our aging
parents and a disabled sibling—in other words, live
life. Additionally, for significant periods during those
years, I became a caregiver.
In the ten years
since Sandra’s passing, I have been consulted by friends
and family who are going through similar experiences.
Most recently, a business colleague told me that his
wife just had surgery for ovarian cancer and I started
sharing with him my observations about a husband or
significant other’s job when a loved one is stricken
with cancer. Those conversations led me to prepare this
article on ten steps for effective caregiving.
While most of my examples are from ovarian cancer, I
think they are applicable across the spectrum of
diseases that make a significant impact on the family
constellation.
STEP #1 EDUCATE YOURSELF
Being an effective
caregiver is a proactive job. It is imperative that the
caregiver becomes an expert on the disease, particularly
when the person with the disease is physically and
emotionally drained from the diagnosis and treatment.
This means reading the consumer oriented literature from
the various relevant organizations such as the National
Ovarian Cancer Coalition, The American Cancer Society or
the National Institutes of Health, plus reading the
professional literature.
Some of this
literature is available on the general search engines
such as Google or Yahoo, but it is also useful to try
the sites medical professionals use such as MEDLINE and
MEDLARS. In some instances, relevant articles may
only be available as abstracts online so to read the
full text it will be necessary to go to a hospital or
university library. My experience has been that
librarians are exceptionally helpful in assisting you to
acquire virtually any article.
Understanding these
articles will be a new challenge. Initially many of them
will, because of their technical nature, appear to be
gibberish. However, within a few weeks of starting this
self-education project the articles will start making
some sense. As important as the articles themselves
might be, knowing whom the authors are is equally
important. The articles will provide a crucial way of
identifying those physicians who are doing the cutting
edge research on the disease. More on that later!
A final way to
educate yourself is to attend professional meetings or
at least obtain the professional meeting abstracts. The
reason for this is also to identify, meet and talk with
the cutting edge researchers so that you will have
resources for second or third opinions or perhaps to
select a new physician.
STEP #2 BE ASSERTIVE
(THIS IS THE TIME FOR SERIOUS CHUTZPAH)
Do not be a passive
recipient of care. Ask questions, consider alternative
approaches, and get second opinions. When someone
you love is receiving care for a serious illness, they
are often in a dependent and weakened state and the
caregiver is the advocate. Effective advocacy is not
about winning a popularity contest for most compliant
patient, but rather always finding out what is in the
best interests of the sick person.
Physician loyalty is
good, but never put that ahead of the main objective;
that is getting the best quality care for your loved
one. For example, at one point we consulted a highly
regarded professor of gynecologic oncology who gave us
advice which, if followed, would have shortened Sandra’s
life by 15 months. It was only by seeking a second and
third opinion did we learn that he was simply ill
informed about the particular therapy. In our situation,
the second opinion was from an oncologist 400 miles away
and the third from someone 1500 miles away. So, a
willingness to go the extra mile, literally and
figuratively, is an essential step in getting good care.
Illustrative of this is the experience of a friend and
neighbor from Florida who had prostate cancer and went
for consultations in Miami, Baltimore, Boston and
Rochester, Minnesota before deciding that the right
place for him was the Mayo Clinic in Minnesota.
In another personal
example of assertiveness, I am reminded of a Friday
evening, when in response to my wife’s severe pain, the
oncologist ordered morphine for her which was later
delivered by a home health nurse. Within sixty
seconds of arriving at our house, the nurse had placed
the box of syringes on the table, told me that I should
use them as per the instructions inside the box and
“have a nice weekend.” I stopped her as she was reaching
for the doorknob and asked if she would show me exactly
how to use the preloaded single dose syringes (up until
this point, I have been filling syringes from vials).
She explained it was very simple: ”Just open the
container and use it.” I demanded that we examine the
new system more closely and it turned out that it was
not all that simple. Indeed, the nurse eventually
admitted that she could not understand the instructions
in the box. Next she called the home care pharmacist who
also had to read the instructions and together they
figured out the mechanism for using the system.
Finally, over an hour later, the home care nurse was
ready to train me on using this new system. If I had
been compliant, Sandra would have been frustrated, angry
and in needless pain while we waited for yet another
house call in the middle of the night.
Assertiveness is
also making phone calls to strangers, particularly
researchers, who may be working on something you want to
know about. I have done this numerous times and always
found that a polite and honest conversation about a
loved one’s health will be well received.
STEP #3 UNDERSTAND THE THEORY OF
DIFFUSION OF INNOVATION
The concept of
diffusion of innovation is that new clinical treatments
are not uniformly adapted throughout the health system.
Typically, there are centers of innovation, early
adopters of innovation, mid-term adopters and eventually
late adopters of innovation. Some of this has to do with
economics and some of it has to do with the pace of
information being transmitted through professional
channels via the literature and meetings.
Since time is both
your best friend and worst enemy, it is imperative that
caregivers be knowledgeable about what is being
developed. Often years elapse between the first
stages of research and the time of publication of
research results. Consider the history of Taxol. Today
Taxol is a first line drug for breast and ovarian
cancer. Its long and complicated history began in 1962
when the first samples of the pacific yew tree bark and
needles were collected. Twenty-two years later, in 1984,
after an enormous amount of research, it began its first
Phase I clinical trials to see if it was a useful drug.
It took another nine years, until January 1993, before
it was generally available for other than experimental
purposes. It then took another period before it found
its way out of the academic medical centers to the
corner oncologist.
It is imperative to
know that it may take several years merely to prepare an
article for professional publication, have it go through
the peer review process and then have it published. For
the proactive caregiver, knowing what is on the horizon
provides a leg up if it is necessary to go for some new
medications or procedures that are not available in your
community. For example, in my wife’s case, we had been
following the saga of Taxol and were ready to jump on it
as soon as it was released. In fact, thanks to the hard
work of Dr. Donald Higby at Baystate Medical Center in
Springfield, Massachusetts, a teaching hospital
associated with Tufts Medical School, Sandra was the
first person in Western Massachusetts to take the drug
one day after its release.
STEP #4 RECOGNIZE
FEAR, ANGER AND FRUSTRATION
Anyone who has a
diagnosis of cancer is fearful and often angry. Why me?
is a common question. Some people with cancer also blame
others; “If there wasn’t so much stress in my life, I
wouldn’t now be sick.” My experiences suggest that all
you can do is validate that fear or anger. Trying to be
logical or scientific does nothing but add fuel to the
fear or anger. If possible, some type of therapy,
particularly support groups for the entire family,
should be considered.
In most instances,
the caregiver is equally fearful and angry. While it is
clearly useful to share these emotions with therapists
and in a caregiver support group, one should be more
circumspect in sharing it with the victim. Frankly, they
have enough on their plate dealing with their own
issues. As another friend put it simply, “The caregiver
has to be the rock, the foundation of the family, and
who needs a crumbling foundation?”
STEP #5 FORGET
STATISTICS
There is only one
statistic that counts, whether you are alive or dead!
Articles and physicians like to talk of survival rates,
but these numbers are not relevant since one’s only
concern is not the cohort’s survival but rather the
individual’s survival. So even if the five-year survival
rate for ovarian cancer is 15 percent, what difference
does it make if you are not one of the survivors?
STEP #6 STAY STRONG
EMOTIONALLY AND
PHYSICALLY
Being a caregiver is
tough work. Most of us find that we still have to do our
outside jobs and we’ve picked up a full-time inside job.
Obviously when Sandra was feeling well, the job was
fairly undemanding. On the other hand there were times,
particularly in the last 18 months, when being a
caregiver was exhausting and frustrating work. My days
and nights seemed to be endless with oxygen equipment
that needed filling, suction pumps that needed tending
and total parenteral nutrition (TPN) gear that needed
injections, hooking up, cleaning, and computers that
forever needed programming. Even when we went to the
hospital, I found myself part of the care team, often
being involved in the changing of TPN equipment from our
home care computer system to the hospital’s system.
It is also hard work to be someone else’s advocate, but
we have to always remember that our advocacy may indeed
make the difference between life and death!
Under no
circumstances should you be a hermit. For me, as for
many men, work became an important social outlet.
Initially I was afraid to tell people what I was going
through, but as I opened up to a few colleagues, I found
them to be an enormous source of support for which I
will be eternally grateful.
Finally, being
physically healthy is as important as emotional health.
I don’t need to spend much time on what we all know:
eating right and exercise. Unfortunately for me, I would
find solace in “comfort food” and be too tired to
exercise. My only advice is fight for your own health—it
is definitely critical for you and your family.
STEP #7 EXPLORE ALTERNATIVE AND
COMPLEMENTARY APPROACHES
The history of Taxol
is truly a story of alternative medicine. After all,
what was the search that found Taxol about but examining
thousands of plants to see if one of them might yield a
possible answer? So there is much we do not yet know and
a great deal of alternative and complementary medicine
that may be helpful or at least comforting.
In our personal
journey, we never stopped the traditional medical
treatments, but did go regularly to a Chinese physician
who specialized in herbal medicines. Additionally,
Sandra spent a week at Deepak Chopra’s Ayurveda
Medicine center, regularly meditated and periodically
had massages. Obviously, it is impossible to know
whether any of this helped her physiologically, but I
can attest to the fact that she felt it was emotionally
important to her.
STEP #8 TAKE CARE OF
THE PAPERWORK, WILLS, FUNERALS, ETC.
This is heavy
lifting. Perhaps this is the attorney in me,
but I urge all families to put their “business” houses
in order. This means preparing wills and trusts if
necessary and arranging all manner of end stage issues
such as deciding who will be the health care proxy, what
are the requests for heroic interventions and DNR
orders, decisions on custody of children (in worst case
scenarios) and finally funeral arrangements.
I do not wish to be
morbid and my strongest wish is that we all live to the
time we say in Yiddish, “biz hundert un tsvantsik” (you
should be well till a 120). But just in case that does
not work out, it is simply better to be prepared. When
death occurs, the last thing in the world you want to be
doing is rushing off to a mortuary and listening to a
funeral director discuss the 20 options for caskets,
liners, limos, services, etc. Take care of this rotten
business at a more opportune time and then forget about
it!
STEP #9 BE
OPTIMISTIC/COMMIT
TO THE FUTURE
There is absolutely
no value in pessimism. It brings both you and your loved
one into an unhelpful and paralyzing place. Many of us
who are faced with these enormous challenges have found
it helpful to take concrete actions that indicate this
commitment. For example, I have seen people buy new
cars, take long postponed trips, purchase new houses
and, in our own case, finally, after more than a decade
of vacillation, build a huge and beautiful addition to
our 100-year-old home.
STEP #10 FIND A
SPIRITUAL FOCUS
A saying that came
out of World War II and most recently applied to
Hurricane Katrina was “there are no atheists in foxholes
or hurricanes.” The obvious point is that when we are
faced with deadly situations, we are likely to look for
support or solace in a higher spiritual order. Rabbi
Harold Kusher in his best selling book “Why Do Bad
Things Happen To Good People” addresses this question
and concludes, as I understood him, that God’s role is
not solving the problem, but being a source of comfort
while we are going through our hard times. In my own
case, this trust in a higher spiritual power provided a
measure of solace, a focus for prayer and an avenue for
my rage.
While life may not
always be fair, the crisis generated by a serious
illness does indeed provide the caregiver with
extraordinary and very real opportunities to demonstrate
love. The demonstration of love for another will provide
a lifetime of rewards for everyone, but in order to
maximize its benefits, the caregiver must learn how be
effective for themselves and their loved one. My
hope is that this article is a step (or perhaps ten
steps) in that direction.
Seth B. Goldsmith is
Professor Emeritus at the University of Massachusetts at
Amherst School of Public Health and Health Sciences
where he taught health law, health policy and other
courses. He served as the CEO of Miami Jewish Home and
Hospital in the late 1990s and is presently Director of
Extendicare, the company that owns and operates 440
nursing homes and assisted living facilities in the U.S.
and Canada. He is an author and editor of 16 books and
scores of articles including several award winning books
such as Choosing a Nursing Home (Prentice Hall).
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