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The Meaning of the Word Hospice

(If the blog has been quiet recently, it is not because I stopped writing. It’s because I was working on my first assignment for my “Narrative Journalism” course. This is my first course in pursuit of a Master of Fine Arts in writing. How’s it going you ask? I’m getting crushed by people who really know how to write, and I couldn’t be happier. No, of all the things I’ve been called, “masochist” is not in the top 1,000 choices you have unless you count the years before the Red Sox won the World Series in 2004. In that case, it’s number two. Here is my first effort into the journalism field. Feel free to critique.)

(FYI, this version is a re-edit of the version originally posted.)

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Easily the darkest night of my soul was when I had to admit to myself I could no longer care for my wife. No matter how heroically I fought, I could not keep her in the comfort and dignity she deserved after her protracted and tortuous fight against cancer.  My wife needed the gentle advice and experience of those who spend their lives living amongst the suffering and dying. She needed hospice.

As the medicine business goes, hospice is a quiet job–no sirens or flashing lights. Often, the hush in the room is magnified by the white noise of humming machines. If you have spent more than an hour amid the clamor of a hospital, you might think this reclusive space is the ideal environment for curing all ills, but it is not, and few people know it more than Barbara Volker does. She has provided physical and emotional comfort in similar hushed rooms to countless dying patients and their families for the last half of her 44-year nursing career. 

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Barbara Volker in her Daughters of the American Revolution regalia.

“The first 20 years of my nursing career were mostly spent working critical care… I do think that one thing that ultimately pointed me in that direction [of hospice] was the numerous times I spent using extreme measures to save the ‘un-savable.’”

Extreme measures are often physically violent and uselessly harm the patient. Burn marks and fractured ribs are commonly reported.

 “I particularly remember a resuscitation effort on an elderly woman that went on and on. I finally said to her physician, ‘Are you trying to make her live forever?’ To which he replied, ‘If I can.’  Years later, when I started hospice nursing, I found it a great relief to be able to acknowledge that we couldn’t save every life and that there came a time when it was okay to acknowledge that it was time to change the goal from cure to comfort care.”

Our horror started on Halloween Day of 2010, when my wife went to the doctor with a backache. Cancer had invaded her sacrum (lower spine). In March of 2011, she had it removed and titanium put in its place. It took 27 hours of surgery performed by five surgical teams over a three-day period. Part of that time, she had to be in a position that placed her face down with her head below her heart, and that caused severe edema (a build up of fluids) in her head and neck. The combination of the edema and a heart attack during surgery decreased blood flow to her eyes long enough that she lost complete vision in her left eye, and has less than fifty percent remaining in her right.spine_sm

It was 54 days from surgery until she returned home. Soon after that, we were informed that the cancer had spread to her lungs. Before surgery, doctors told her she would be wheelchair-bound for the rest of her life. She defied them by walking unaided in the spring of 2012. This victory was short-lived; a year later the titanium that functions as part of her spine fractured, leaving her in agony, and unable to ever walk again. Her condition is inoperable.

I tried to care for her at home as I had done for years before, but I could not. That’s when the painful realization hit me that my wife’s level of care resided far outside of my abilities. I contacted hospice.

When I called, I did not know what to expect. That same morning a nurse arrived at our home to evaluate my wife’s condition. She quickly admitted my wife into hospice, and soon after, a hospital bed was delivered with a special air mattress to prevent bedsores. Her pain management was reevaluated, and new prescriptions ordered, so she could be made as comfortable as possible as quickly as possible. We were assigned a doctor, primary nurse, a licensed vocational nurse, an aide, a social worker, and a chaplain. We were stunned with the amount and quality of care we received in such a short span of time, but there was a question that I was afraid to ask: Is this the normal level of care, or is she dying?

I later learned that this was their typical level of care, and that it was not unusual for patients to improve in hospice, as did my wife. But after this scare I wondered to myself: How do hospice workers deal with the constant exposure to mortality they face? Not having to provide fruitless “extreme measures” may be welcome, but death is still not a stage of life most people are at ease with.

“A hospice nurse has to develop a sense of comfort with death,” says Barbara.  “That comes from a gut level realization that we all die and that includes her… It actually started for me in just making myself say the words ‘death’, ‘dying’, ‘died.’ …I practiced in front of the mirror.  People can’t make themselves say those words.  They use all sorts of euphemisms…’he passed away’, ‘he met his maker.’

“Probably the question that any hospice nurse gets asked the most often is, ‘How can you do that, doesn’t it depress you?’ …It is all in your perspective.  In hospice care, the patient’s death is the expected outcome… the goal becomes to do all that is possible to help the patient and family to live their lives as fully and as comfortably as they can. For most of them it means being where they want to be; usually at home with the bed in the middle of the living room so they can be part of life, with their family, where the dog can jump up on the bed and snuggle.”

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Barbara’s words are bittersweet in our home. Our dogs often jump on my wife’s hospital bed and nap with her, as does our cat, and while my wife’s physical comfort is almost back to what it was that memorable Halloween day, we see signs of disease progression.  We both know the end to this story, but we continue to write as many new chapters as we can. This is still our story – with the help of hospice.

Typically, doctors consider themselves as the ultimate worldly authority over their patient’s condition, but Barbara disagrees. She believes that people have control over the timing of their deaths, even knowing it well before being informed by doctors. “My acquaintance with death and dying started at age nine when my five year old brother died of polio… My mother tells the story of how my brother asked her to give his tricycle (his most prized possession) to his friend, Tommy,” said Barbara. “My mother replied that it was his and he should keep it, but he told her he wouldn’t need it any more.  The morning he died, he told my parents to go home.  They had barely gotten home when the phone rang with the news of his death.  I believe that he knew that it was his time and that it would be better if his parents didn’t have to see that happen.”

Another crucial aspect of hospice is the support they provide to family members who are often the first line of caring. Barbara’s words resonate deeply within this caregiver, “Family members who are caregivers often fear most not being ‘enough’…good enough, knowledgeable enough, skilled enough, and supported enough to help their loved one stay at home through their last days…  most of the time all a family member really needed was reassurance that they had done the right thing and the confidence that someone from hospice would answer their questions or visit if needed.”

The physical and emotional comfort that hospice provides often create a sense of acceptance of death and the dying process within their patients; the end approaches like an old friend rather than a mortal enemy. Barbara explains that dying people are often escorted to their last breath, “…they tell us about seeing a variety of beings not visible to those of us at the bedside.  This is often upsetting to family members, but very seldom to the patient who often seems pleased and comforted by what or who they see. … I decided long ago that it makes no sense to…tell the patient that there was no one there.  As a Christian, I believe in life after death and, for me, these visitations to a family member who is about to join them in the afterlife is affirmation of that belief.”

In the experience of this writer, there are no atheists in the foxholes cancer forces families to take shelter in; hospice is a godsend to patients and their families. Likewise, deep emotional ties are often forged between hospice workers and their patients, and they take great satisfaction from the difficult work they do.

“If the hospice staff is so lucky as to be able to work with the patient and family for a week or more, they usually can get symptoms under control and provide the help the family needs to care for their loved one and be there to answer questions in the middle of the night when needed.  When those things happen, the peaceful death of the patient is the ultimate goal with a comfortable life until then.  That is NOT depressing.  That is fulfilling for the hospice staff,” says Barbara.

Hospice support also affords many caregivers the opportunity to look back after their loved one dies and be satisfied with how effective their care was. This relief eases their loss.

The only response to impending death is the offering of an amazing grace.  Nowhere is this better demonstrated than when a dying person realizes how valued they are by the actions of others, and that the remainder of their life – including their death – is worthy of great dignity and comfort.

My experience has shown me this is the meaning of the word hospice.

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