Tuesday, February 12, 2013

They Thirst: The Disturbing Trend to Deny Basic Needs to the Dying

*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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