No One Dies Alone- My New Appreciation for Hospice and Palliative Care

“No One Dies Alone”

The nurses on my Hospital’s recent Covid-19 designated floor have a motto… “No One Dies Alone.” 

I gained a new appreciation of the importance of their care and compassion when I found myself sitting at my Mother-In-Law’s bedside and watched her pass away, but in her case with the blessing of family at her side.  

She was a wonderful woman and one of the most kind and trusting ladies you could ever meet.  She spent her life caring for others, especially her family, leaving behind 6 children, 13 grandchildren, 17 great grandchildren and 2 great great grandchildren.  She raised her children on a farm in northern Ohio and worked everyday to take care of the children as well as the crops and the animals.  She also loved Jesus, took everyone to church and helped start and build a local Seventh Day Adventist Church.

Now at the age of 92, she found herself fighting for her life in a skilled nursing facility.  She was diagnosed with Covid-19 one month before passing, but by all accounts sailed through this exposure with no obvious symptoms.  She in fact had 2 negative tests weeks before her death which allowed us to be at her bedside when she passed. In retrospect however we feel the Coronavirus did have an impact with her subsequent loss of appetite, loss of weight and progressive downhill course.

Despite her love for Jesus and profession of looking forward to going to heaven, her body seemed to resist death up to the very last breath.  The strength of her heartbeat and persistent respirations leading up to the end amazed all of us who were there. It seemed the desire for her body to survive outlasted her own mental desire to live.

We got the call on a Wednesday that the previous day she had stopped eating or drinking, which was a significant change from her usual routine.  Although she had not been able to walk for months, she still maintained an active appetite and enjoyed food as a simple pleasure.  She especially enjoyed candy suckers. Once these were no longer requested, we knew things were bad. 

I flew out the next day with my wife and sister-in-law to be at her bedside.  Our first day we found an extremely emaciated woman who could only open her eyes, close her mouth around a sucker or wetting sponge, and simply lay and breath with her mouth open.  By this time she was already into day 3 of no oral intake.

The next day she appeared even weaker with fewer episodes of eye opening and it became unclear how much she could understand.  We spent the day at her bedside repeatedly telling her how much she was loved, face-timed multiple family members and tried to make her as comfortable as possible.  Despite her critical condition (dehydrated, no urine output, dropping oxygen level and decreased ability to only open her eyes) she continued to fight for life.  We left that night with instructions for nursing to call us certainly with any changes and we would return in the morning.

The next morning, now Saturday, as hard it was to imagine we discovered a lovely lady who was even weaker, appeared more dehydrated, able to only open her eyes occasionally and when they did open looked as if she was asking for help.  She was asking us to help her make the transition and move on from this body which was simply performing its automatic responses of breathing and heart pumping.  There was no kidney function, there was no spontaneous muscle movement, there was no speech, there was no swallowing and the only expression seemed to be of general discomfort.   Hospice gratefully stepped in and simply started some opiate medication.  We could see a sense of relaxation after the first dose, but still the body would not give up.  Gratefully over the next 2 hours 2 additional doses given and we could see progress.  Her radial pulse had disappeared, and her respirations had started to slow.  

It was at this point my wife started singing the hymn “Shall We Gather At the River”.  The combination of this hymn as well as the Lord’s Prayer along with the humane medication allowed her to pass on.  She gasped 3 last breaths and then all life ended in what appeared to be one long exhalation.  My wife and sister-in-law both felt this was God’s breath of life leaving her.  We were fortunate to be with her when this happened and hold her hand during the transition.

I cannot express enough thanks to all those nurses who have stayed at the bedside of someone else’s loved one and performed the same action-  holding a patient’s hand during the transition.  I also have a new appreciation for the humane and loving administration of medication to assist in this transition. 

Hospice is defined by the American Cancer Society as providing compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible. 

Palliative Care as defined by the World Health Organization is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness.  Palliative care provides relief from pain and other distressing symptoms, affirms life and regards dying as a normal process.  As I see it there is a significant amount of overlap between these 2 forms of specialty care. 

Whether you call it hospice care or palliative care, the results are clear to me that it is all compassionate care.

Charts can never reflect the reality of the situation.  I used to sit in peer committees and notice a patient would perhaps be placed into palliative care at noon, medications such as opiates started, and the patient would pass away by 6pm.  My previous perception was Wow-  that was certainly fast!   But the reality is it was an eternity for the patient and family.  The chart barely reflects the struggle the patient must have had during the days prior, or the pain the patient was experiencing that day.  The chart also does not reflect the family’s grief and distress watching their family member struggle to make the transition to the afterlife and does not reflect the fear of the patient while the body simply would not give up.  

We have been given these wonderful bodies which have a function of supporting our souls.  What I have witnessed is sometimes the soul is ready, yet the automatic functions of this amazing body are not yet ready to quit.  Just as we have incredible medical interventions saving life, we need to appreciate some of our simple interventions assisting patients in transitioning out of this life.

“No one dies alone” now has a new meaning.  I applaud our nursing staff during this time of a pandemic who chose to take on this motto and vision.  Especially since most of these nurses were not previously practicing hospice care nurses but found this role necessary during this pandemic.  It shows the ultimate example of compassion any nurse can share with a human being to choose this end of life role and hold a patient’s hand during this dying process.  It is also a blessing for anyone to have a career where this moment can be shared with either the patient or the family. 

I am now a believer that hospice and palliative care nurses, or any other nurses who incorporate palliative care techniques, are truly angels in helping patients leave the automatic functions of our body and allow the soul to move on with its memories.

-Mark Elliott, MD, MBA