The Inpatient Hospice

Hospice works to provide caring, compassionate care while death occurs naturally.

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There are many patients who I will never forget.  Some died in my arms.  Some had amazing families.  Some lived in abusive conditions, extravagant homes, or on the streets.  What I’ve learned in my adventures is that everyone has a story, and I am honored and humbled to be a part of and to witness a few moments at the end of their story.

One of the first nights I worked at the inpatient unit I admitted a young man.  He was in his twenties, over 400 pounds, and trached (this is when a tube is placed through the throat in order for you to breathe, sometimes with a ventilator).  The ambulance bought him in after his family called; they could not care for him and they wanted him transferred out of their home right away.  He was dying.

Hospice transfers patients from home to the inpatient unit during periods of crisis, uncontrolled pain, new onset of seizures, or other medical reasons.  Transfers were not uncommon, even during night shift. It was the middle of the night and he arrived alone, no one but uniformed paramedics accompanied him.  This was a young man who required a lot of help – he couldn’t move himself, clean himself, or communicate easily.  He was alert; he was having difficulty breathing, and he seemed to be in pain.  Did I mention he was actively dying?

I assured him I would do everything to help get him comfortable.  He tried so hard to say something to me, but the tube in his throat that kept him breathing also prevented his vocal cords from working.  I got closer, listened as best I could, and was shocked.  “Kill me,” whispered through his trach.  I pulled back with wide eyes, not sure if I’d heard correctly.  That’s not how hospice works!  Hospice provides caring, compassionate care while death occurs naturally, but we do not euthanize patients.  He grabbed my wrist, using every bit of energy to repeat “kill me, please.”  It was clear that time, said with his pleading eyes and his trembling body.

His breathing was labored and he grimaced when moved, so I said “I’ll get you some pain medication.”  His eyes squeezed shut, tears rolling to his side.  He was in pain and I could treat that, but I couldn’t kill him… that’s not what hospice does!  But he was saying it, no doubt in my mind.  It seemed he’d been through so much and a young man in his condition was not what someone would think of as dignified.  He was in pain, so the Dilaudid and Ativan I gave helped him relax.  I was still at a loss.

Thank goodness the other nurses on duty where experienced and I asked them to take a look, curious to see what they thought.  “He’s still in pain,” the charge nurse said, “give him another dose of Dilaudid with Ativan.”  I gave the maximum the doctor ordered three more times before my shift ended.  The next night I worked, he was gone.  No one mentioned him, but I had to ask.

“The doctor came in and increased his medications.  He died peaceful around noon.”  The nurse told me she was with him when he took his last breath.  No family came; no one at their home even pick up the phone when she called so a message was left that his remains were sent to the mortuary.  They still hadn’t called back when I arrived that night.

I was appalled at how the family treated this young man during his last days.  Thank God they had the decency to send him to hospice and allow the loving, compassionate nurses there to take care of him.  No one should be in pain – physical, emotional, or spiritual.  The hospice nurses, including myself, made sure this young man was cared for, comfortable, and died with as much dignity as possible.

The Big Question

Having been raised in a Catholic home, I was taught that Saint Peter would be waiting at the Pearly Gates with a large book containing the names of every human being, and if you had been a good person he would grant entrance to heaven. Otherwise, you would descend into hell. As a child, there were many times I worried that the keeper of the keys to heaven would see my name on the naughty list. I spent a lot of time in the confessional.

As I matured and became educated in science, logic, and reason I fell away from my Catholic beliefs; religion to me was seen as a means for authorities to control the masses, and history of the Christian Church confirmed my beliefs with facts and historical evidence. Even now I see many outdate parables in the bible involving selling children and stoning sinners, things that would put a person in prison a very long time today. I’ve drifted from Catholicism and into other religions and eventually decided we all are worshipping the same energy. There is only one God, one Source, one Divine presence. And the Big Question – is heaven real? Yes, heaven is real.

My first experience in hospice was as a volunteer at the hospice inpatient unit. I wasn’t yet sure about a career change, so exposure to hospice patients seemed like a logical yet noncommittal step in that direction. The first assignment was to sit with an elderly woman until her family traveled from out of state to be with her. What I witnessed in her room forever changed my way of thinking.

I do not recall her name, but she was from the era of the 1940s because there was a wedding photo of her and her husband next to her bed set in that time period. The nurse told me she has severe dementia and had not spoken a word for years. She was heavily medicated for comfort and unable to move on her own; she had not opened her eyes since they found her on the floor in the nursing home. Technically, she was comatose. It’s likely those in this condition are able to hear, not with their ears but with their spirit, so I talked with this woman while we waited for her family. I told her I was sorry she had fallen and was in a hospice, and because of the religious artifacts in her room I said a few prayers over her. I said that her family was in route to see her and to hold on a while longer so they could see her before she leaves us. For the next couple of hours I made small talk, held her hand, wiped her eyes, and let her rest. She never once moved or made a sound.

It was getting late and I was nodding off in the chair next to her bed. I jumped at the sound of her voice, saying “Bernie…”, and then I saw her hand, her frail, contracted hand, lift up and reach toward the ceiling. I stood up to see her eyes were wide open and she had a peaceful smile across her lips as she repeated, “Bernie…my Bernie.”

“Oh my,” a voice from the hallway startled me. The daughter and son-in-law were at the door, chins dropped, amazed at the sight.

“Is Bernie her husband?” I asked.

“No,” said the woman. “Bernie was my brother. He died last week, that’s why we were out of town. But we didn’t tell Momma. She doesn’t know.”

There is no way to explain for certain how this happened – how her ability to speak, move, and see returned. How she was seeing her recently deceased son in the ceiling tiles. There’s no way to know what she really saw, and why she was calling Bernie’s name. I know what I believe. I was witness to the connection between two souls on different planes of existence. I believe I was witness to the transition between life and death, a holy place where spirit lifts our souls from this world to the next. Something is out there, and loved ones are waiting.

Why Hospice?

Anne showed me my path in nursing.

I am often asked why I chose to work in hospice and palliative care.  There isn’t one answer to this question other than to say it was a calling. There is such a spiritual side to hospice; it’s so much more than giving IV medications and changing bandages.  I don’t consider myself an expert in end of life care, and I know I’m not the best hospice nurse in the world, but I find caring for those facing the end of their time to be extremely rewarding. I know it’s a totally selfish reason, but the people I have met in this journey have given me purpose, inspiration, insight, love, and hope. I have seen pain and bliss, anxiety and peace, loneliness and friendship. I have seen things that are difficult to explain.

The first time I thought about becoming a hospice nurse did not involve a patient transitioning to hospice.  A recently employed RN coordinator at a skilled nursing facility, I was still adjusting to the change from acute care on a busy post-surgical unit to long-term care.  My office was across the hall from assisted living rooms where the frail, elderly residents sat at their doors waiting for someone – anyone – to visit.

I realized that many of the wonderful residents of this facility did not have family nearby, including a lovely 99 year old lady who we’ll call Anne. Born in England in 1896, the 75 years living in the U.S. has faded her British accent so just a trace remained.  She was elegant, polite, kind, and amazingly fit for nearly a century of wear and tear.  We started with simple greetings in the hallway, then like a moth I was drawn to the light in her gentle soul and started visiting her as much as possible.  At times we would eat lunch together in her room or I’d bring her homemade cookies. We became close, maybe because my grandmother passed the year before, maybe because we were kindred spirits.

Anne may have been the most independent resident in the assisted living rooms.  The nursing home was square with a courtyard in the middle, and I remember she walked the inside circle after every meal, pushing that walker with the pink basket as fast as she could go.  I was not aware at the time, but now I recognize much of her routine is common among centenarians. She ate mostly vegetables; she always had an afternoon nap and went to bed early.  She maintained friendships with many other residents and staff, and she always saw the glass half full.  Anne was always a positive ray of sunshine in the dismal surroundings of a nursing home.

As her 100th birthday approached, her family contacted the facility to arrange a space for a celebration. Family came from New York, Tennessee, Colorado, and Hawaii where she spent most of her married life as a Navy wife.  She moved to the mainland when her husband retired, and she joked that most people in Indiana want to retire in Hawaii yet she did the opposite and ended up in Indiana. Her husband died decades before and was buried in Indianapolis next to their oldest son; she remained there because it had become her home.  To her five children, 17 grandchildren, and many great-grandchildren, Indiana had become the central meeting point for family reunions, including her 100th birthday party.

I remember family showed up a week before the celebration, trickling in for visits as they arrived.  Anne was the happiest I’d ever seen her.  No more waiting at the door for visitors – they waited at her door to have one-on-one time with this amazing family matriarch.  She pulled volumes of photo albums from the top of her closet and went through photos from England, Italy, Hawaii, and from every vacation she had taken with her husband.  She reminisced with family right up to the afternoon she blew out 100 candles (she had a little help).  After the cake was devoured and the guest had left, Anne went to her room to eat her dinner like it was any other day.  I stopped by before going home to see how she was doing.

“I’ve had the best time today.” She remarked. “Seeing my family together again warms my heart.”

“That’s great, Anne,” I replied.  “You will have so many new pictures that you’ll need another album.  You can share them with your family next year on your 101st birthday.”

“Oh no,” she said matter-of-factly.  “That will be the last time my family gets together like we did today.”

“I will have the film developed when I go to the store tonight.  They have a instant photo booth.”  I planned to surprise her with a new photo album.

“I have lived 100 years and I think that is enough for me.  I’m ready to go home now.  I’m ready to be with the Lord.”  She seemed at peace, staring into the distance. I didn’t think much of that comment because most older people talk like their next birthday isn’t a given, and I suppose it isn’t for any of us.  Besides, she was exhausted.  She might have been spry for 100 years old, but she missed her nap and all the visitors during the week had been a little overwhelming at times.

“You get some rest tonight.”  That’s all I said before I left.

The next morning I noticed she wasn’t in her room watching the national news headlines during breakfast, which was part of her daily routine. I stepped in and saw her bed was not made and her dentures were still in the cup on her night stand.  I immediately checked with the nurse’s station to see what was going on.

“I don’t know, she just died,” the night nurse said as she was leaving.  “She was fine at 4:00 a.m. bed checks, then at 6:00 o’clock she was gone. Died peacefully in her sleep.”

“She went as gracefully as I’ve ever seen anyone die,” commented another nurse.

“That’s crazy!”  It’s all I could think, because it was absolutely bonkers that this perfectly healthy woman died on her 100th birthday, or technically the day after. Sure, she was a centenarian, but there were no medical issues that would have caused her to die suddenly.

“Oh Sweetie,” the older nurse commented. “After you’ve been around a while, you will see a lot of crazy things.”

Looking back I believe Anne had simply decided to die.  I can’t explain how someone could do that – to control their body or have it cooperate with their decision, but I certainly understand why Anne would have if she could have.  She told me herself she was ready to go.  I heard her but I did not listen, something I vowed to change going forward.

This is when I realized the magnitude of the nurse’s presence with those facing end of life.  I was one of the last people to speak with Anne.  I also witnessed how death can be a moving, miraculous event. Most of Anne’s family was still in town, and those who could, stayed for the service. Those who had to leave were grateful they had the chance to see her once more. What an honor to have known her, to spend time with her in her final days. It was Anne who showed me how natural and beautiful the end of a life can be, and it was Anne who inspired me to walk the path to hospice nursing.