Ken’s Take on the World


Healthcare: Privilege or Right?

As Republicans struggle to obtain enough votes in the US Senate to pass their version of a bill (Better Care Reconciliation Act) that was originally brought forward to repeal, and replace, the Affordable Care Act (ACA) much focus has been placed upon the economic costs and the personal costs to those who would be affected should this legislation become enacted into law.  As one who has paid attention to the debate over healthcare access for the past three decades, I have been thinking of a much deeper question that we should be asking of ourselves as it would, perhaps, better drive the debate over this legislation.  The question that each of us should ask is this:  Should healthcare be considered a privilege, a commodity, that should be available only to those who can afford such care or, should it be considered a necessary right for every person that must be protected, and assured by government?

 

When I have posed this question to those who express opposition to the ACA, the most common response that I receive is that healthcare should be treated as any other service that a person would seek out.  The most common support offered for this position is that every person receiving services should be required to pay for such services.  To bolster this claim, these critics argue that it is not fair to expect others to pay for services that they receive.  On its face this appears to be a reasonable argument that must be considered.  After all, you wouldn’t take your car to a mechanic and not be expected to pay for repairs or maintenance on your vehicle.  You don’t take your family to a restaurant and expect to receive free food, do you?  You wouldn’t call an air conditioning repair person and expect to not receive a bill for the parts and services provided, would you?  These criticisms appear to suggest that healthcare services and products are no different than whether or not your vehicle or your heating and cooling systems at home are functional.  This is a false and illogical argument.

 

When one dines out at a restaurant, one knows what they can afford and if they are unable to afford to dine at a certain establishment they simply eat dinner at home or at a less expensive restaurant.  When your air conditioner is on the fritz, if you do not have the money available for repairs, you will need to open your windows, use fans, or other methods of staying cool.  For those with underlying health conditions in which extreme heat is dangerous, communities provide cooling centers, or family and friends are often able to step in to provide temporary shelter until the air conditioning is repaired.  Even if a new central air system must be installed, the cost is almost always going to be less than $5,000 USD.  Many heating and cooling companies will also finance this amount to keep costs manageable.  Similarly, if you need repairs on your automobile, you can determine what are the most crucial and pay for those and defer other repairs until later.  Or, your community may have decent public transportation available.  Or, you may be able to car-pool to work or use a ride-sharing service.

 

Healthcare, unlike these other services, is not a commodity that can simply be delayed in many cases.  I have frequently likened the provision of healthcare as an essential service that must be available to every single person.  Similar to a community that provides fire departments and trained personnel to operate this life-saving equipment.  Or, law enforcement agencies that respond to safety or criminal complaints.  Or, military agencies like the Coast Guard who respond to emergencies on our nation’s waterways.  We don’t bat an eye when we are asked to fund these critical services.  As a society, we have come to realize these are critical pieces of infrastructure that exist for the benefit of each of us even if we never need to directly use these services.  Why, then, do we look at healthcare differently?

When I have attempted to discern how so-called conservatives continue to maintain the position that healthcare is a commodity, and not a right, in addition to the arguments about paying for services and the burdens of having to pay for those who cannot afford these services, they remind me that healthcare services are already provided to people in the nation’s Emergency Departments (ED) regardless of one’s ability to pay for such care.  This, then, implies there is, in fact, some existential right to healthcare.  When I point out this inconsistency in logic, one person actually mentioned that fewer (uninsured) people seek medical care as if this implies lower costs to taxpayers.  The problem with this (il)logic is that while uninsured individuals are far less likely to present to a primary care physician in the community setting, they are far more likely to present to an ED for treatment of conditions that can be much more effectively, and economically, managed in a community setting by a primary care physician.  This translates into significantly increased healthcare costs for all of us.  The average cost of an ED visit in the United States is nearly $2,200 based on a study described in “The Atlantic.”  Compare this to the average cost to a primary care provider (PCP) in the US which is only $100 based on an Agency for Healthcare Research and Quality (ARHQ) study by the Department of Health and Human Services (HHS).

 

A review of multiple studies has demonstrated that access to health insurance is correlated with significantly improved health outcomes.  The review, published recently in the “New England Journal of Medicine” (NEJM), documents that improved healthcare outcomes are especially notable among pediatric patients.  Further, this review notes that not only are healthcare outcomes improved, but other measures of quality of life, including educational achievement, are improved with access to health insurance.  Other studies have demonstrated the significant economic consequences associated with illness.  I am not only speaking of the direct costs associated with providing medically-necessary care, but the impacts that illness and preventable injury have on individual and societal economic stability and growth.

 

I believe we must frame the debate over access to health insurance as one of a necessary right that must be protected by government actions.  Only then, will we be able to determine the most effective means of financing healthcare in the United States.

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Preparing the Central Sterile Processing Department for Ebola

Ebola electron photograph Photo MD Health

The Ebola virus is something that has been on the mind of virtually every American these days.  In addition to becoming a formal public health concern within the past month and a half, it has managed to become a political issue.  The fact this has become a political issue is disappointing and a topic for a different post.  This post is to inform readers of preparations that must be made to protect healthcare providers from the very real possibility of providing medical care to a patient who presents with symptoms that are consistent with the Ebola virus.

Hospitals in the United States have already provided care for at least seven individuals who have become infected with Ebola virus.  This includes two missionary medical aid workers who contracted the virus while working with Africa, a man from Liberia who arrived in the Dallas Texas area, two nurses who cared for the Texas patient, and a cameraman for a media outlet that was covering the epidemic in west Africa.  The infections involving the two nurses who provided care for Thomas Duncan, the Texas patient, are troubling and put on display flaws with the Centers for Disease Control and Prevention (CDC) response to the currently unfolding public health situation.  While I have great respect and admiration for the CDC, and especially the work of Dr. Anthony Fauci who I personally admire a great deal, I am disappointed with their response to the current situation unfolding in the US with regards to Ebola.  Dr. Fauci has been the single beacon of confidence in the current conversation on this major public health concern.

It is important to note that not a single healthcare worker involved in the treatment of the two missionary workers contracted Ebola during their care of these patients.  It is also wise to note that no healthcare worker who provided care to Mr. Duncan during his initial visit to Dallas Presbyterian Hospital nor the Emergency Medical Technicians (EMT’s) who transported Mr. Duncan to the hospital a couple of days later have contracted the virus.  None of Mr. Duncan’s personal contacts on the area in which he was staying prior to his admission to the hospital were infected either.  These bits of news should provide some reassurance to an American public that seems to thrive on fear and conspiracy.

This brings us to the two nurses who, apparently, provided care to Mr. Duncan after he was admitted into the hospital.  By all accounts, these two nurses, as well as other nurses, technicians and physicians who cared for him until his demise in the hospital from multiple-organ failure, were wearing at least the level of personal protective equipment (PPE) that had been recommended by the CDC.  Guidance on donning (putting on) and doffing (removal) of PPE has been made available on the CDC website here: http://www.cdc.gov/sars/downloads/ppeposter1322.pdf  I have found this document to be flawed in regards to the acceptable level of PPE required for the safe and effective care of a patient in the most contagious stages of Ebola virus infection and, in particular, with the sequence for removal of PPE in any case.  However, until now, this is what healthcare workers have had for a resource.  In defense of the CDC, they have stated that the PPE guidelines provided are the minimum levels of protection for healthcare workers caring for a patient with confirmed or suspected Ebola virus infection.  This is not very reassuring.

Donning PPE

It is believed that the two nurses that have become infected with Ebola following the care of their patient may have inadvertently contaminated themselves during removal of their contaminated PPE.  This, in itself, is a tragedy.  It is likely that additional healthcare workers caring for Ebola patients using the same measures could become infected based on the selection of PPE and if they are removing their PPE using the steps outlined by the CDC.

Part of the rationale behind the CDC’s guidance is an awareness that very few American hospitals currently have the capacity to provide enhanced forms of PPE for significant numbers of their healthcare providers.  Full protective suits and gear are limited and stockpiled in small quantities for acute, transient, emergencies and quantities necessary to provide extended care for a patient requiring such gear is not on hand in most facilities.  I have learned this at my own facility as I began researching to prepare a policy for, specifically, Central Sterile Processing Department (CSPD) staff members who will be on the front lines of cleaning, decontaminating, disinfecting and sterilizing items used in the care of a patient with Ebola.

To date, no patient hospitalized for treatment of Ebola in the United States has required surgical intervention in the course of their treatment or recovery.  This is great news, because there is currently no guidance from the CDC on how to handle surgical intervention on such a patient.  The American College of Surgeons has issued guidance on surgical intervention for a patient with Ebola virus infection here: https://www.facs.org/ebola/surgical-protocol  This is a good resource for Operating Room (OR) team members including surgeons, nurses, anesthesia providers and surgical technologists.  It does not, however, address the concerns related to the reprocessing of items used in surgical procedures for these patients.  In my contacts with other CSPD managers, including at US hospitals that have treated patients with Ebola, there are no policies in place and the comments are that they are, essentially, relying on current CDC guidance if necessary.

Below is the first draft of a policy specifically addressing the needs of CSPD staff members who will bear the responsibility of cleaning, decontaminating, disinfecting, and sterilizing items used in the care of a patient with Ebola virus infection.  I am also attaching two of the appendices that address donning and doffing of PPE.  Perhaps someone at the CDC might incorporate these into a poster format!

While the vast majority of US hospitals are currently unprepared to handle an onslaught of Ebola cases, I have extreme confidence that most hospitals can safely and effectively care for a patient infected with the Ebola virus if they are given the proper resources and training.  It is critical to tamp down the hysteria and fear surrounding Ebola and base our actions on a scientific understanding and using evidence-based measures for providing care that is safe and effective for both our patients and our healthcare workers.

The Policy:

Handling and Processing of Items Exposed, or Potentially Exposed, to Ebola or Other Hemorrhagic Fever Patients

Purpose:

To provide guidance and direction for Central Sterile Processing personnel on the handling of instruments and durable medical equipment (DME) exposed, or potentially exposed, to the blood or other body fluids of a confirmed, or suspected, patient with Ebola, other hemorrhagic fever viruses.

Rationale:

XXXXXXXXXXX serves as the primary quarantine facility for travelers arriving through Detroit Metropolitan Airport.  The possibility exists for a disembarking passenger to present to airport officials with symptoms that may be consistent with suspected infection with Ebola, or other hemorrhagic fever, viruses.

To ensure that all proper infection control practices are implemented in order to protect staff members, patients, visitors and others who may be exposed to surgical instrumentation or durable medical equipment (DME) that has been used on a patient with confirmed, or suspected, infection with Ebola, or other hemorrhagic fever, viruses.

Policy:

All Central Sterile Processing personnel must follow specific guidelines when handling surgical instrumentation and durable medical equipment (DME) that has been exposed, or potentially exposed, to the blood, or other bodily fluids, of a patient with confirmed, or suspected, infection with Ebola, or other hemorrhagic fever, viruses.

Procedure:

It is the responsibility of the attending physician to notify the Infection Control (IC) Director, or her/his designee, anytime a patient presents with symptoms consistent with exposure to, or infection with, Ebola, or other hemorrhagic fever, viruses.

The Infection Control (IC) Director, or her/his designee will notify, in addition to other appropriate Managers, the Manager of the Central Sterile Processing Department (CSPD), that a patient with confirmed, or suspected, Ebola, or other hemorrhagic fever, viruses has been admitted to the facility.

The Manager of the Central Sterile Processing Department (CSPD), or her/his designee, will work with other appropriate Managers to ensure that items necessary for the cleaning, decontamination, disinfection and/or sterilization of items used in the care of patients with confirmed, or suspected, Ebola, or other hemorrhagic fever, viruses are readily available for staff members within CSPD.  (See Appendix A)

The Manager of the Central Sterile Processing Department (CSPD) will ensure that appropriate education and training has been conducted for all staff members responsible for the cleaning, decontamination, processing, disinfection and/or sterilization of surgical instrumentation, or durable medical equipment (DME), used on a patient with confirmed, or suspected, Ebola, or other hemorrhagic fever, viruses.

The Manager of the Central Sterile Processing Department (CSPD) will maintain documentation of the qualifications of CSPD staff members with regard to the cleaning, decontamination, processing, disinfection and/or sterilization of surgical instrumentation, or durable medical equipment (DME), used on a patient with confirmed, or suspected, infection with Ebola, or other hemorrhagic fever, viruses.  The Manager of CSPD, or her/his designee, will be responsible for conducting annual in-service education and training for addressing Ebola, or other hemorrhagic fever, viruses.

The Nurse Manager, or her/his designee, of a unit providing care for a patient with a confirmed, or suspected, diagnosis of infection with Ebola, or other hemorrhagic fever, viruses will immediately notify the Central Sterile Processing Department (CSPD) Manager, or her/his designee, when an item used in the care of the patient is to be transported for processing by the CSPD.

Items transported to the Central Sterile Processing Department (CSPD) must be contained within a sealed, impervious, barrier.  Small items should be transported within an enclosed, or covered cart and not carried by hand.  Durable medical equipment (DME) should be contained within a large plastic bag, or similar impervious containment device, and transported on a cart that is also covered, where possible. Isolation carts, crash carts and other wheeled carts or equipment that have been used in the care of a patient with confirmed, or suspected, infection with Ebola, or other hemorrhagic fever, viruses are to be covered with a large plastic bag, or similar impervious containment device, for transportation to the decontamination area.  Fluids are to be contained within sealed suction canisters.  Linen and trash must be contained within autoclaveable, leak resistant bags.  These bags must then be contained in impervious bags for transport to the CSPD.  Items that cannot be autoclaved must be segregated and discarded in red biohazard containers that are leak-proof and puncture-proof.

Items transported from a patient care area to the decontamination area must be constantly attended.  Items are not to be placed on an elevator or left in hallways awaiting transportation.  Contaminated items are not to be transported through the pneumatic tube system.  The person delivering the item(s) to the decontamination area must immediately notify the Sterile Processing Technician on duty that an item has been delivered to the decontamination area.  The Sterile Processing Technician on duty must immediately notify the Central Sterile Processing Department (CSPD) Supervisor on duty or on call.  The CSPD Supervisor will designate qualified individuals to perform the cleaning and decontamination of items associated with the care of a patient with confirmed, or suspected, infection with Ebola, or other hemorrhagic fever, viruses.  The CSPD Supervisor will directly supervise the cleaning and decontamination of such items.

The Central Sterile Processing Department (CSPD) Supervisor will ensure the decontamination area is prepared and appropriately stocked for the decontamination process.  (See Appendix B)

Central Sterile Processing Department (CSPD) staff members assigned to the cleaning and decontamination of items used in the care of a patient with confirmed, or suspected, infection with Ebola, or other hemorrhagic fever, viruses are to wear specific personal protective equipment (PPE). (See Appendix D)  CSPD staff members are to work in pairs as assigned by the CSPD Supervisor.  One staff member is designated as the “Primary” Technician and the other is designated as the “Secondary” Technician.  Both staff members shall wear the specific personal protective equipment (PPE) required for this process.  All other staff members are to be removed from the decontamination area for the duration of the cleaning and decontamination process of items associated with the care of a patient with confirmed, or suspected, infection with Ebola, or other hemorrhagic fever, viruses.

The cleaning and decontamination process for surgical instrumentation used in the care of a patient with confirmed, or suspected, infection with Ebola, or other hemorrhagic fever, viruses is consistent with established cleaning and decontamination processes recommended by the Association for the Advancement of Medical Instrumentation (AAMI), the Association of Professionals in Infection Control (APIC) and the Association of Perioperative Registered Nurses (AORN) regarding the cleaning and decontamination of any surgical instrumentation.  In all cases, manufacturer instructions for use (IFU’s) must be followed consistently.  NOTE:  Surgical instrumentation that cannot be processed using immersion, automated cleaning processes, ultrasonic cleaning, or high-temperature sterilization methods should not generally be used in the care of a patient with confirmed, or suspected, infection with Ebola, or other hemorrhagic fever, viruses.

The Primary Technician will be responsible for performing all tasks associated with the cleaning, decontamination and disinfection of surgical instrumentation and durable medical equipment (DME) associated with a patient with confirmed, or suspected, Ebola, or other hemorrhagic fever, viruses.  The Secondary Technician will be responsible for ensuring no other personnel enter the decontamination area during this process, as well as directly observing the Primary Technician to identify any compromise in the personal protective equipment (PPE) and ensuring that the process for removal of PPE by the Primary Technician is performed properly.

Durable medical equipment (DME) used in the care of a patient with confirmed, or suspected, infection with Ebola, or other hemorrhagic fever, viruses is to be cleaned using an appropriate, hospital-grade, disinfectant that is capable of inactivating non-enveloped viruses.  Adherence to wet times is to be strictly enforced.  Wheeled equipment, including IV poles, crash carts, isolation carts, stretchers, wheelchairs, etc are to have all surfaces, including wheels, wiped down with approved, hospital-grade disinfectants that are capable of inactivating non-enveloped viruses.

Donning Specialized PPE:

Appendix D—Donning of personal protective equipment (PPE) for the cleaning, decontamination, disinfection and sterilization of items involved in the care of a patient with confirmed, or suspected, infection with Ebola, or other hemorrhagic fever, viruses

 

The employees who are assigned as “Primary” or “Secondary” Technician will be identically attired for the duration of the cleaning and decontamination process.

  1. The employees will don disposable scrub tops and pants.
  1. The employees will remove all jewelry including earrings, bracelets, necklaces, finger

            rings, and wristwatches.

  1. The employees will apply standard shoe covers over shoes.
  1. The employees will wear a hair cover and a surgical mask (if they will be wearing a

completely enclosed hood) or N95 high-filtration disposable respirator mask.

  1. The employees will don a pair of surgical-grade gloves ensuring adequate fit.
  1. The employees will don a Tyvek® biohazard suit hood. Ensure flaps of hood are

fully extended down the front and the back.  NOTE:  This is for a suit with a

separate hood/face-shield.  Attire must comply with ASTM: F1671.

  1. The employees will don a Tyvek® biohazard suit with attached booties. If the suit

does not have attached booties (one-piece), the employees will need to don water-

proof, disposable, knee-high booties.  The employees will ensure that the hood

flaps are completely contained within the suit.  Attire must comply with ASTM: F1671.

  1. The employees will use Duct tape to completely seal the sleeve to the inner gloves

making sure to leave a one (1) inch flap of tape for removal after the cleaning and

decontamination process.  Duct tape will also be used to seal knee-high booties if

these are worn leaving a one (1) inch flap of tape for removal.

  1. The employees will use Duct tape to completely seal the collar of the suit and the

body of the suit making sure to leave a one (1) inch flap of tape for removal after

the cleaning and decontamination process.  NOTE:  This is for a suit with a separate

hood/face-shield.

  1. The employees will use Duct tape to completely seal the zippers of the Tyvek® suit

making sure to leave a one (1) inch flap of tape for removal after the cleaning and

decontamination process.

  1. If the Tyvek® suit does not have an enclosed hood with face-shield, the employees

will don fully-enclosed goggles that secure with an elastic band AND a full face-shield.

  1. The employees will don a second pair of gloves that must be at least surgical-grade or

thicker-ply.

  1. The employees will use Duct tape to completely seal the outer glove and sleeve

making sure to leave a one (1) inch flap for removal after the cleaning and

decontamination process.

  1. The Central Sterile Processing Department (CSPD) Supervisor will verify that all

steps of the PPE donning process have been followed before permitting the

Technicians to enter the decontamination area.  This includes ensuring all areas

have been taped/sealed properly.

Removal of PPE:

Appendix E—Doffing (Removal of) personal protective equipment (PPE) used in the cleaning, decontamination, disinfection and/or sterilization of items involved in the care of a patient with confirmed, or suspected, infection with Ebola, or other hemorrhagic fever, viruses

The employees who are assigned as “Primary” or “Secondary” Technician will be identically attired for the duration of the cleaning and decontamination process.  Personal protective equipment (PPE) is to be removed in a specific order in order to reduce the risk of inadvertent contamination of self during the removal of this gear.  The Central Sterile Processing Department (CSPD) Supervisor will directly observe the removal of PPE to ensure there are no breaks in technique.

  1. Verify the decontamination area has been properly cleaned and all items exposed,

or potentially exposed, to any contamination resulting from the cleaning and

decontamination process have been correctly disposed of.

  1. Position waste hamper with empty, autoclaveable, waste bag near tarpaulin that

has been positioned on the floor near the entry vestibule.

  1. Step onto tarpaulin to be sprayed off with approved, hospital-grade, disinfectant

ensuring that all surfaces of the PPE has been wetted.

  1. After the established wet-time criteria has been met, PPE may be removed in the

following order:

  1. Face-shield (if worn) is removed by grasping strap at back of head and pulling

up and over the head.  NOTE:  Applies if a separate hood/face-shield was not

worn.  Discard in waste hamper.

  1. Goggles (if worn) are removed by grasping strap at back of head and pulling

up and over the head.  NOTE:  Applies if a separate hood/face-shield was not

worn.  Discard in waste hamper.

  1. Remove each strip of Duct tape by pulling on tab left during donning of PPE.

Exercise care to not tear Tyvek® suit material.  Roll tape between hands into

a ball and discard into waste hamper.

  1. Remove booties (if used) and discard in waste hamper.
  2. Unzip Tyvek® suit exercising care to not let gloves touch scrubs.
  3. Remove outer gloves and discard in waste hamper.
  4. Remove Duct tape from inner glove/sleeve by pulling on tab left during

donning of PPE.

  1. One-piece suit—Grasp back of hood and pull back and downwards rolling

suit down back and arms ensuring outside of suit does not come into

contact with skin or scrubs.  Carefully step out of suit and off tarpaulin onto

clean floor.  Carefully roll suit up, ensuring suit does not come into contact with

skin or scrubs, and discard into waste hamper.

  1. Two-piece suit—Grasp suit at shoulders and pull back and downwards rolling

suit down back and arms ensuring outside of suit does not come into contact

with skin or scrubs.  Remove hood by grasping material of hood and pulling up

and over the head, ensuring outside of hood does not come into contact with

skin or scrubs, and discard in waste hamper.  Carefully step out of suit and off

tarpaulin onto clean floor.  Carefully roll suit up, ensuring suit does not come

into contact with skin or scrubs, and discard in waste hamper.

  1. Remove first inner glove by grasping palm of second glove and pulling downward

and off hand and discard in waste hamper.

  1. Remove second inner glove by sliding finger under cuff and rolling glove down

and off fingers and discard in waste hamper.

  1. The Primary and Secondary Technician will each don a pair of gloves then an impervious

gown and a pair of outer gloves to roll up and discard the tarpaulin, secure the waste

hamper and place hamper on autoclave cart.  The waste hamper is to be

decontaminated as other pieces of equipment.  These items will then be removed as

described above and discarded in a regular waste hamper along with shoe covers,

hair covers, masks, and disposable scrub tops and pants.  Clean scrub tops and pants will

be immediately available in the vestibule to change into.

  1. Remove mask by untying strings, or by grasping band, and pulling up and over

head and away from face.

  1. Remove hair cover by grasping top and pulling up and over head.
  2. Remove shoe covers by grasping shoe cover at heel and pulling down and

toward toes.

  1. Remove first glove by grasping palm of second glove and pulling downward

and off hand.

  1. Remove second glove by sliding finger under cuff and rolling glove down and

off fingers.

  1. The Primary and Secondary Technician will be escorted to an area where they are to

perform hand-washing and be permitted the opportunity to shower.



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.