Ken’s Take on the World


Thoughts on Death and Dying (or Life Goes On)

Introduction

Each year, I have my new students write a paper on the topic of death and dying.  There are a couple of reasons for this.  First, the previous instructor of this introductory course to Surgical Technology had this as an assignment for her classes.  As I was new to teaching this course, it was easier not to change the syllabus up and so it remained.  Second, many of the students are relatively young, in their late-teens or early-20’s, a life stage, they learn is, referred to as early adulthood.  As a result of their relative youth and life experiences, many have not had an opportunity to witness dying or death very closely.  As these are folks, a number of whom are entering the healthcare professions for the first time, I believe it is important for them to have an understanding and to develop empathy for those facing critical challenges in their lives.  As these learners develop professionally, they will be tasked to interact with patients and family members coping with serious, life-altering, news regarding illness, traumatic injury, or other infirmity that may well lead to their death.  This will always be challenging.  Many of us may believe that it is easier to see someone die when they are elderly and have had a full life and find that it is extremely stressful and disheartening to witness the dying or the death of a young person.  It is important to remember that each of our patients is a unique individual with personal needs and desires and as healthcare professionals, we must strive, wherever possible, to meet these needs with compassion.

The original text assigned for this project was the book, “On Death and Dying” by Elisabeth Kubler-Ross.  It was written in 1969 and served as the preeminent resource on the topic for a number of years.  The book, based on interviews with a number of patients facing a terminal illness, their family members, and healthcare workers caring for these people established a method by which individuals cope with a terminal diagnosis.  This became known as the grieving process and described steps that an individual went through when faced with a terminal diagnosis.  It was a five-step process that Kubler-Ross defined based on her experiences with the individuals she interviewed.  As my students have well described her observations, I will simply state that, according to Dr. Kubler-Ross, the grieving process begins with a stage of denial, progresses into anger, and through bargaining and a period of depression; the patient reaches a stage of acceptance.  I first read this book in the 1980’s and re-read it the first year this topic was assigned by me in 2003.  This second reading had particular relevance to me as I will discuss later.

It should be noted that I am not an English or literature professor and I inform my students each year that I am not looking for a book report or a critique of the literary merits of the book they select to use as a reference.  Rather, I instruct them that after they read the book they will take an event from their own lives, one that may have nothing to do with death and dying, per se, but one that caused them stress and emotional turmoil, and to describe how they experienced grief and loss during that time.

Over the past decade, I have read some other books and other references regarding dying and death, including Kubler-Ross’ follow-up to “On Death and Dying” titled, “On Grief and Grieving” which followed family members and care givers who provided care for one who was dying, or who had died.  A newer book, “Final Gifts” by Hospice Nurses, Maggie Callanan and Patricia Kelley introduces us to the concept of “Nearing Death Awareness” and discusses how patients who may seem to be delirious or illogical are actually attempting to communicate with those around them things they are experiencing.  These references, and others, are now on the list of approved readings for students preparing to research material for this project.

Seeing Death

I have worked in healthcare since I was 16 years old.  I was a student in the Nurses’ Aide Co-op program while in high school.  At that point I was unfamiliar with the concept of death other than it was something old people endured.  The only family member I recall who had died up to this point was my great-grandfather, Big Dziadz, if you’re Polish, and I was quite young when he died.  One of the memories I have was of pushing him in an old wheelchair at the nursing home where he was at when my Mom and Grandma would visit him.  The floors were marble and there were wooden benches in the visiting area.  It reminded me of a church, cold and hushed.  Not very much like home at all.  As a Nurse’s Aide, or Orderly as males were sometimes called, I did not experience the death of any patient.  There were a couple of patients who were clearly dying and one of these was a sweet elderly lady whose face always brightened on the days that I was there.  Whatever her disease process was, I cannot recall, however it left her bones very fragile and she was on the orthopedic ward that I was assigned to.  She was very patient and did not complain.  Her family was always in attendance and she always gave me candy or baked goods that her family had brought in for her with a wink saying I was too skinny!!  One day she was no longer there when I came in and that was that.  Life went on.  For me.

At 17, I joined the US Navy to become a Hopsitalcorpsman.  As a kid, my dream was to become a firefighter/paramedic and this was a good way to get some of that training.  While in Hospitalcorps School, I learned about Surgical Technology and jumped at the opportunity.  I figured that you could not perform surgery on board a ship and I would be assigned to a land-based hospital and be able to attend college classes so when I left the Navy, I’d be able to land a firefighting job right away.  I quickly learned there are some ships that are large enough to provide a surgical platform and every guy in my class was assigned to one of these large ships!  I was assigned to the USS Saipan, a helicopter-amphibious assault ship.  On deployment in the Arctic Circle in August of 1986, one of our helicopters carrying 21 US Marines and crew, hit the side of our ship and landed in the frigid Arctic waters.  I ended up on the Search-and-Rescue crew in a 36’ patrol boat that night as the only medic in our crew of six.  That night, I saw death, up close and personal.  The first victim brought out of the water was not breathing.  I cleared his airway, inserted an oropharyngeal tube and prepared to perform mouth-to-mouth, when he started coughing.  At this point the second crash victim had been brought aboard our boat and he, too, was not breathing.  I repeated the same process of clearing the airway and positioning the oropharyngeal airway.  As he began to weakly cough I pulled the tube out and noticed the first Marine had stopped breathing, I went back to him and got him breathing.  In the meantime the other, less seriously injured survivors were being brought aboard and being sheltered in the tiny cabin below-decks.  By this point the second Marine had also stopped breathing and I had to make the decision to focus on the first Marine to make sure he continued to breath.  It was a decision an 18 year-old should not have to make, but I do not regret the decision.  Life went on.

A week later, I was on the trauma team that received a medevac patient who had been run over by a large tracked (as opposed to wheeled) vehicle.  We brought him into our trauma room and even before we had cut all of his clothes off, we identified several fatal injuries and ceased our efforts.  I did not have another patient die in my care for several years.  Life went on.

A Wake-Up Call

By 2002, I had worked in the Operating Room for almost 18 years.  I had been teaching Surgical Technology for over three years.  Life was good.  Much had happened since that evening in the Arctic Ocean.  Most of it was good.  Some of it had provided me with challenges, and subsequently, the strength to face the future and become better for it.  About nine months after the helicopter rescue, I was discharged from the Navy for being gay following a witch-hunt aboard the ship.  While working in surgery one day in 1988, I was accidentally stabbed with an 11 blade and contracted Hepatitis B.  Ironically, I had just recently received the first dose of the vaccine, but that was apparently insufficient to prevent infection.

In January of 2002, I went in for a routine Human Immunodeficiency Virus (HIV) test.  I had first tested negative in 1986 during the blast of testing that was mandated for all US service members once a reliable test became available.  I then tested annually until about 1995 and then tested every other year.  I should have had my routine test in 2001, but somehow, with my work and personal schedule, did not get it done.  While I had been feeling rundown and had had bronchitis late in the prior year, I was not overly concerned.  During the weeklong wait for the results I became ill and was admitted to the hospital with pneumonia.  My oxygen-saturation on admission was 87% with supplemental oxygen and dropped to 86%!  The doctors were interested in putting me on a ventilator and moving me into the Intensive Care Unit (ICU).  I was not that interested in this option and elected a 12 hour wait-and-see approach.  Because I worked at the hospital, and because I was already awaiting test results, my Doctor did not order an HIV test.  Instead he ordered surrogate tests of the immune system.  One of the markers of immune function is the CD4 count.  Also referred to as T-helper cells, they muster immune responses to infection.  Normal values for CD4’s are 500 to 1,500 cells/mm.  I had 26!  By clinical definition, I had Acquired Immunodeficiency Syndrome (AIDS)!

Those who know me know that I enjoy research and reading and learning new things.  After discharge from the hospital I began to do research on HIV and AIDS.  I went to the testing center and received my official HIV test result.  I did not experience denial in the way a number of the people interviewed by Kubler-Ross did.  In fact, I don’t recall experiencing any of the stages described in her work.  Considering that I considered myself fairly knowledgeable about HIV and AIDS, I did think that my diagnosis was pretty much a terminal sentence with, perhaps, a life expectancy of a couple of years.  I immediately began to research treatment options and prepared for my meeting with the Infectious Disease (ID) specialist.  I learned that AIDS may not quite be the death sentence that I was anticipating, although I was starting the game down several runs in the eighth inning with two batters out.  While doing this, I prepared my Durable Power of Attorney for Health Care, or Health Care Proxy.  Life went on!

My parents, family and friends were all very supportive and continue to be very important to me today.  I have an independent streak and tend to look at things like this as challenges to overcome instead of reasons to whine and complain!!  My ID doctor is an incredible guy and when I had my first appointment with him about a month after getting out of the hospital was surprised I was not already on anti-retroviral therapy (ART).  After explaining that my primary care physician did not want to start something that he (my ID guy) may not have wanted, we agreed to begin a specific regimen that I suggested.  My HIV viral load dropped dramatically and my CD4’s bounced back to near-normal levels.  Life went on!

Side effects from the medication and occasional bouts of illness over the years have left me frustrated and I was able to change to a new regimen which greatly reduced the side effects.  For the next several years, my health was relatively stable.

Setbacks

In 2010, I developed sudden, terrible, headaches and neck pain that led me to contact my ID doctor.  He sent me to the ER and I was admitted after a lumbar puncture (LP) to determine if I had meningitis.  I did.  Cryptococcal meningitis to be specific.  The reader may recall that around this time a number of people were dying of a cryptococcal meningitis strain in the Pacific Northwest and even though it was a slightly different strain, my folks were quite worried and afraid of this development.  I had a percutaneous intravascular central-line catheter (PICC) placed and for the next two weeks had to go into the hospital each day to receive infusions of amphotericin B.  In addition, I had to take additional antifungal medications daily for a period of time yet to be determined.  The oral medication, fluconazole (Diflucan®) is generally pretty effective at treating this when used with amphotericin.

For several months, things were pretty good and in mid-February of 2012, the headaches returned with a vengeance along with neck pain and stiffness.  My friend, crypto, had returned.  Another round of LP, PICC insertion and amphotericin was in order.  About a month and a half after completing this round of treatment, the headaches began to return.  My third round of daily hospital visits in less than a year.  It was discovered on cultures of my spinal fluid (CSF) that this strain of organism was resistant to the fluconazole and I was switched over to another drug, voriconazole (Vfend®) which had a lower resistance profile. Because voriconazole interacts with one of my HIV meds, I had to change from my single-pill combination to a regimen that is two pills.  In addition, the amphotericin is very toxic to the kidneys and the liver and so I had to have blood drawn every other day, and in some cases every day, to check for renal and hepatic function.  I was placed on magnesium and potassium supplements as both of these were lowered.  My potassium actually dropped low enough that they considered admitting me to the coronary care unit.

My third round of treatment was extended to four weeks, then to six weeks and finally to eight weeks.  Each day I was on the unit receiving my infusions I saw many other patients, a majority of whom were receiving chemotherapy for various malignancies or blood transfusions to replace volume or cells.  I often times walked the halls, as I was there for eight to ten hours a day, and say “Hello!” to them or ask how they were doing.  The nurses all laughed as when I would check in, they would send me into a room and I would get all the lines ready and sometimes have my vital signs done before they even got there!  They would say that I was taking their jobs away!  My last treatment was on August 4, 2011 and I have not had a relapse since then.  This is good, because, I am not certain I can tolerate another round of treatment like that.  My kidney function has returned to normal levels and although my liver function is currently normal, Hepatitis B has taken a toll on my liver.

A Cold Chill

In early December of 2011, I had a routine abdominal ultrasound (U/S) for evaluation of the liver.  We (my ID doctor and I) had not made sure we did this more frequently and it had been a few years since the last U/S showed no abnormalities.  I was not overly concerned with the results of this one as I lay on the stretcher while the technician squirted some warm conducting gel onto my abdomen and began the examination, pausing occasionally to capture images for the radiologist to review.  I reminded the technician that I needed the results sent to my doctor who was part of another health system from where I had the exam performed.  I had to have the exam performed at the facility approved by my employer in order for it to be covered by insurance.  The joys of our medical insurance industry.  I made sure she had the telephone and fax numbers for the doctor’s office and went on with my life.

I heard nothing from my doctor, which was not unusual because we never bother each other for routine issues, however, my Mom pressed me to contact his office to see what the results were.  When I contacted him in mid-January, he said he had not received the results yet.  I told him that I would personally obtain and deliver the results to his office.  Based on this timeline, you may sense that I tend to procrastinate and you would be correct.  About a week went by before I actually went to the radiology department and obtained a CD-ROM of the imaging study and a written report from the radiologist.

I read the report first as it was only one page and thought, “Oh crap!”  The report identified numerous lesions on the liver that were, “suspicious for metastatic disease.”  I looked at the disc with images and although U/S is not an imaging modality I have much experience interpreting, it was obvious what the report was referring to.  I shot an email off to my doctor explaining the findings and informing him I would be dropping the report and CD-ROM off at his office in the morning.  I did a search through the medical literature for diagnosis and treatments for hepatocellular carcinoma (HCC).  What I found was not promising.  Not promising at all.

The next day before lunchtime my doctor called to express his thoughts and he appeared as surprised as I did.  We had an appointment already set for a few days later and discussed some options.  That appointment stood out for me as it was the first time it was in his office instead of an examination room.  Even though this was a planned visit, he did not examine me that day.  He informed me that he had spoken with one of the liver transplant specialists who recommended Magnetic Resonance Imaging (MRI) of the entire abdomen to determine if this was a primary HCC or if it was metastasized from elsewhere.  I left the office that day thinking, “Cancer staging.”  Wonderful.  I updated my Healthcare Proxy and drafted a Living Will.

I scheduled the MRI that day and they were able to slot me in for a couple of days later.  I now understand why some patients experience a sense of claustrophobia when having this type of exam.  It is also associated with annoying and loud noises.  The very next day I went to the radiology department to get a CD-ROM of the imaging and a copy of the report.  For some reason they said I had to go to medical records to get a copy of the report, but they printed me the disc of images.  I went to medical records and filled out the form to obtain a copy of the radiologist’s report which the clerk provided to me.  I went to the hallway and sat down on one of the benches to look at the report.  I mumbled to myself as I sat down that I should have brought some tissues.  I pulled the report out of the envelope and began to read: “…nodules appear to be cirrhotic in nature.  No evidence of primary malignancy in the abdomen or pelvis.”  Whew!!!

This past fall, I met with a new liver specialist, down the hall from my ID doctor.  I am still trying to determine if I like him.  We had a nice conversation and he asked a number of questions but only performed a cursory physical exam.  He and I are in agreement that we need to perform imaging every six months.  I will also be making sure we have tumor markers checked every six months as well.  As it was near the six-month time frame, he ordered an abdominal U/S which he really wanted performed at that hospital instead of the one where I worked.  He seemed resigned to the fact that I needed to have it done at the hospital where I work.  I had the U/S performed and obtained the disc and report and hand delivered them to the liver doctor’s office.  I received a call a few days later that based on the results he wanted to order an MRI.  To my interpretation of the report, and imaging, no significant new findings are present.  He, through his staff, again wants the MRI performed at hospital A and I inform his staff that I will need to have it performed at hospital B because that is where I work.  I have the MRI done, obtain the report and the disc and deliver them to the liver doctor’s office.  That was on Thursday and he may be out of town for the holidays.  I have an appointment scheduled with him at the end of January.  The radiology report on the MRI recommends a liver biopsy as the MRI cannot rule out the presence of HCC.  And, life goes on.

Final Thoughts

As healthcare workers, we are in a unique position to provide comfort and specialized care of a patient who is facing death.  Even an Environmental Services employee or Dietary Aide can help improve the quality of life for a dying patient.  A simple smile or a warm “Hello!” can make a difference in some patient’s day.  For those of us with specialized training, we may, too often, evaluate laboratory results and attempt to manage symptoms, always hoping for a cure.  In the majority of cases, there is a cure, or at least some therapy or procedure that may be performed to provide some quality of life for the patient and his or her loved ones.  In the end, regardless of our level of knowledge or our professional title, we are each human and in need of human contact and interaction.  Holding someone’s hand for a moment, pausing to really listen to the needs of our patient, speaking with the patient in a way that the patient can comprehend, and with honesty and empathy.  These are things that our patient’s need and deserve.  I have heard it reported that patient’s enter a healthcare facility with the expectation that all of the staff members are technically qualified and that the reason they come into a particular facility is not that the staff members are greater technical experts but, rather, that the caregivers at the particular place are compassionate and empathetic.  In “Final Gifts,” Callanan and Kelley, make a strong case that those who are dying are very aware of their own impending death.  They need to be comforted but not pitied.  They need to be respected.  They seek to be understood.  As healthcare workers, we need to be attuned to the communications of our dying patient’s as they may share something that would otherwise be missed or dismissed as delusional rantings.

As a healthcare worker, who has been a patient, and likely will be a patient again, I have recognized that there are hundreds of little things that sometimes get missed by the trained professionals tasked with providing effective and efficient care.  One thing I must say is that all of the nurses and doctors and lab technicians and radiology technicians and ultrasound technicians and housekeepers and dietary staff that provided care for me have not missed one important thing when caring for me, and that is that I am an individual, and that I have greatly appreciated their empathy and compassion as much as their technical skill and expertise.

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