*One of the most read articles on +Catholic Ponderings+ is my series on end-of-life care (1,300 targeted page views for the opening article in the series and counting). The subject continues to be one that most of us will struggle with and very few people want to talk about.
As
the faithful continue their bold battle for unborn children, the fight for the
protection of the elderly, nearing the natural end of life, is heard as a vapid
whisper. Their fight takes place on a more intimate battleground. Loved ones are
left struggling with difficult decisions, often with very little guidance or
support. This does not even begin to take into account people who have no
family or loving friends charged with overseeing their care.
There is a frightening trend in our
culture to judge the value of life by a perceived quality. Medical professionals frequently press their
views upon caregivers at a time when they are most vulnerable. The higher your
number in years, the more likely you are to be relegated to a category of
diminished value. There are few medical professionals who believe life has
intrinsic value and will give support and encouragement to caretakers with that
in mind. If
a life is deemed to be of little or no value, the time a loved one has remaining
on earth may be hurried along. In such situations, water and food come to be
viewed as a pharmaceutical intervention and not the basic needs for all human
life they truly are. As Catholics, most
of us can confidently profess our support for all life from natural conception
until natural death. The reality of the
latter touches each of us in varying degrees, as not all of us will find
ourselves in a position of responsibility for the care of a dying person. There
are as many stories about end of life care as there are individuals.
For me, this is a very personal
situation that has forever changed my view of end-of-life care. Having been
appointed Health Care Proxy by my dear grandmother several years ago, I now
have the final say on all of the direct care she receives. We had spoken at great length about her wishes
and she had hoped to make all decisions easier by checking boxes she found to be
appropriate on a “Living Will.” I knew then that I would consent to the removal
of any machines that were keeping her alive or to sign consent for any
procedures which were deemed helpful to her hypothetical affliction. What was
unknown to me, as I would imagine the case would be for countless others, was
that I could not appreciate the vast ocean of gray area I would be forced to
face.
For my family, the quandary is due to my
grandmother’s increasing cognitive impairment contrasted with her good physical
health. As a resident of a skilled nursing facility, she can no longer care for
her own hygiene, is unable to feed herself, and spends her days in a geriatric
chair. Her mind has failed to the point where she can only make her longing for
food or water known to others on rare occasions. Add to these difficulties the
fact that she will often retreat to the inner sanctum of her thoughts and become
unresponsive. Despite daily visits by family members who attempt to waken her,
she revisits these periods of retreat with increasing frequency.
At a regularly scheduled care plan team meeting,
we requested that she have anxiety medication administered at regular intervals,
instead of waiting for her to begin showing signs of severe agitation. My
grandmother had been suffering from bouts of great anxiety and fear, most often
as the late afternoon hours approached. The physician agreed to the need for
the medication in order to keep her more comfortable. The result of this change in medication plan
led to a conversation of comfort care based upon notes contained in her file. My mother, her two sisters, and I had agreed
that we wanted her to be kept comfortable years ago.
Unbeknownst to any of us, “comfort care” is a
loaded topic and one that can have different meanings. For us, to be kept comfortable meant
very basic creature comforts including her psychological, physical, and
spiritual comfort. We wanted her to be kept as pain-free as possible, to be
able to eat food that she enjoyed, and to be surrounded by people who were as
concerned for her as we were. The
physician, on the other hand, looked through notes and told us that if we
wanted comfort care, she should no longer receive her anti-hypertensive and
thyroid replacement medications. He
could not understand why we wanted her to receive these medications based upon
our request for her to be kept “comfortable,” and we could not believe the
absurdity of the question. We spent an hour poring over her blood tests among
various other medical reports. All
reports indicated that her body was functioning within normal limits for a
woman of her age despite her quickly failing cognitive abilities due to
Vascular Dementia. The physician also went on to explain that if my grandmother
at some point was unable to eat or drink by mouth for whatever reason, we were
declining artificial hydration and nutrition by choosing “comfort care,” a.k.a.
palliative care. By designating “comfort
care,” we were also refusing x-rays to determine a possible fracture in a hypothetical
fall, blood tests to check her thyroid and other medical levels we wished to
monitor. We quickly explained the marked difference between our definition of
comfort and theirs. Thankfully, the family members all agreed this was
certainly not our intention and asked that we continue to be informed of any
health concerns as they arise so that we may decide what is best in each
situation. We had nearly consented to hastening her death and were naively
ignorant about more than we had imagined.
In the two years since that meeting, our
family has been tested repeatedly both by the people charged with her direct
care, and in issues of morality. One
such example took place recently when my grandmother’s common cold progressed
to visibly difficult breathing. The
nurse listened to her lungs and agreed with our concern. Due to the late hour and unavailability of
the in-house physician, we requested that she be taken to the hospital
emergency room for x-rays and diagnosis. Our concerns were confirmed and she
was diagnosed with pneumonia and was severely dehydrated.
She was eventually admitted to the ICU
at the hospital and quickly began to show great improvement. With the help of
the IV fluids and strong doses of antibiotics, she was growing more aware and
thankfully consuming soups, stewed fruit and any beverages she was
offered. Her health was so improved over
the course of a few days that she was transferred to a medical floor within the
hospital. Unfortunately, when people who suffer from confusion begin to feel
better in an unfamiliar setting, they grow increasingly anxious. The on-call
physician ordered an anti-anxiety medication for her but it had a horrible
effect. She became totally unresponsive
to all attempts to awaken her. Family members broke up the day into shifts so
that someone was always at her side, beginning with late morning and through to
the late evening. We hoped that she was catching up on her sleep after being so
sick and would awaken the next day. That
was not the case. Instead, after an
attempt by a well-intentioned staff member to feed an unresponsive person
breakfast, she choked and was referred to a respiratory therapist for a swallow
evaluation.
A “nothing by mouth” order (NPO) was
placed on her door. The situation had become a grave one, leaving loved ones
praying for Godly intervention. She was discharged from the hospital the next
day without warning and family members raced to her bedside at the skilled
nursing facility. We were amazed and joyful to find her wide awake in her bed
and eating voraciously. Before we had arrived, she had asked for food and they
ordered her a tray of pureed and liquid foods. Her social worker entered the
room and shared with us the report she had received from the hospital. They
said that their recommendation was that “comfort care measures be put in
place.” The social worker added, “I’m not ready for her to be on comfort
care.” We assured her that we were not
ready either. An emergency care meeting was
arranged to discuss my grandmother’s care once again. As both health care proxy
and protective granddaughter, I looked straight into the doctor’s eyes and
stated, “We do not want to kill my grandmother by withholding nutrition or
hydration just because her brain does not function properly.” He assured me
that no such thing would be allowed to happen and that he now understood our
wishes. He proceeded to give the nurse an order for urinalysis and a blood
test. They finally understood our desires for my grandmother’s care.
My grandmother’s mental acuity continues
to wax and wane as she carries forward her vulnerable, yet necessary, march to
eternity. I am blessed to act as intermediary on behalf of my beloved
grandmother. The responsibility is colossal, the weight of which became much
more evident as we have been presented with decisions of such magnitude. Our
call to value all human life does not mean we know how to proceed in such
situations as Christians and this needs to change.
I was overwhelmed by the volume of
articles available in my online search for information. Some articles were
helpful, some offensive. The United States Conference of Catholic Bishops
website offers several documents on End of Life issues. As with many other
sources, the denial of artificial hydration and nutrition was discussed in
regard to someone in a “vegetative state” and this did not apply to our
situation. I needed a checklist or document that clearly gave bullet-points to
consider issues that took into account my deep faith and love for my
grandmother. I found just what I needed in a two page document “Preaching
Points on Nutrition and Hydration” available through the National Catholic
Bioethics Center website at ncbcenter.org. In the
document, one statement offered an affirmation of exactly what my heart was
telling me.
“What
will be the cause of death?” If the answer is dehydration and starvation, and
artificial nutrition
and hydration can be easily supplied and assimilated, then not supplying them
is a form of
euthanasia. Unconsciousness is not a fatal disease. No one dies of unconsciousness.”
Our fight is not over and the bigger
fight has barely begun: the struggle to provide the basic needs for all aging and
otherwise infirm people, and honoring Jesus Christ within each of them. Caregivers
and their loved ones hunger and thirst, both literally and figuratively, as
they struggle to carry their crosses. May each of us heed the call to be more
like Simon of Cyrene, easing the burdens of our brothers and sisters in Christ.
*Since writing this article, my grandmother passed away. After yet another bout with dehydration/UTI/sepsis, she was finally eating and drinking fairly well. She ate her favorite meal - a turkey dinner and had some soda. According to her caregivers, one moment she was alert and the next moment her head slumped and she was gone. We fought for her right to appropriate care up to her final week in this life. It never got easier to communicate our wishes clearly, or to have them received (and carried out) the way we wanted them to be. It is my hope that others will find support and comfort in my articles on the topic, and as always, I welcome comments or questions either below this post, or in the blog e-mail: catholicponderings@yahoo.com
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