End of Life Care in a Long Term Care Facility

Nancy Karen Culp RN
March 11, 2013 — 1,317 views  
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Flash back to the 1960's when the first nursing homes were being built.  Medical science had progressed to the point where people were living longer because of the medications and treatments available to extend life. In 1960 the average life expectancy was 69.7 years.  Previous to this time, women were home and able to care for their parents and grandparents in that comfortable and familiar environment.  Sometimes families were able to share this care giving with others and grandma or grandpa were moved from home to home of other loved ones that shared this responsibility.  But then women began joining the workforce and the paradigm of caring for our elders in the home shifted and this long time reality of caring for family elders was no longer an option for many.  With women working outside the home, when a family elder became incontinent, disabled or confused; nursing home care was sometimes the only option.  And so elders went to nursing homes to live out their remaining days and to die… hence was born the generation that saw this all happen and in a heartbeat would later say to their families "never put me in a nursing home". 

Fast forward to today.  Medical science continued to grow and extend our life expectancy even more. According to Centers of Disease Control, in 2011 average life expectancy at birth rose to 78.4 years. Females outlive males by at least 5 years but this gap is continuing to narrow over time as the baby boomer females become victim of the same stress related work force illnesses that men as the traditional breadwinners have been subject to.  Nursing Homes, now called Long Term Care (LTC) facilities may only be a temporary stop between hospital and home with what is called their sub-acute care following knee or hip replacements or a stroke.  But the majority of LTC beds are still being occupied by elders to live out their remaining days eventually succumbing to death.  However, with many more additional federal and state regulations that call for, support and monitor the Quality of Life and Care given in LTC facilities, the stay there is not as dire as it once was. 

In my experience many die during the night although I have no scientific evidence to support this observation.  This is followed by the middle of the night or early morning call to the family representative, a difficult and sensitive call for any nurse to make not to mention the impact of this news on loved ones.  Sometimes elders have a sixth sense that death is nearing and others want to die but don't.  Caregivers have long since recognized that the mind is a mysterious and powerful thing.  I remember a couple that lived together in the facility.  The husband died and as the story goes, a few weeks later his wife was seen looking out the window making comment that she saw her husband coming for her, walking towards her across the field outside.  She died within a few days.  We saw no warning signs, it was sudden.  This of course was the talk of the facility.  Or sometimes a dying person will hang on for a special day to arrive or wait for a loved one that is on their way to see them.

As the end nears based on signs like a relatively sudden decline in condition, changes in breathing or circulation or failure of vital organs, death becomes expected and the family is notified.  Most facilities have policies that outline the care given at this time called supportive or palliative care.  A Do Not Resuscitate order will be put into place if not already addressed and a list of treatment options sometimes called a Limitation of Care which defines what will be done or not done such as administration of IV fluids, antibiotics or hospitalization.  Hospice may be called in to offer additional advice, services and family support as needed.  The question families have is how long? Difficult question to answer. We can advise when death is imminent but the incidence of residents reviving for a short period of time is not uncommon.  Death is inevitable when no fluids are taken for 3 days but more time may be needed if the elder has been well maintained and hydrated and especially if they continue to drink even small amounts of fluid.  Supportive care procedures center on keeping them as comfortable as possible.  This may involve administration of pain medications providing maximum comfort, diligent oral care and more frequent turning and positioning to help delay the breakdown of skin that is an inevitable result of body systems slowing down.

Families may set up rotating schedules so someone is at the bedside so their loved one doesn't die alone.  Prayers are said.  Words of love and appreciation are spoken and sometimes forgiveness is given or received.  Hearing is the last of the senses to fade so we encourage families to talk to their loved one even though they are semi or totally unconscious.  Sometimes favorite music is played or reading from a meaningful book is being done.  We make families comfortable by offering them a snack cart, emotional support and even perhaps a chair that turns into a bed so they can remain at their loved ones side in comfort.  Unnecessary medications are stopped and food and drink are offered as a comfort measure only.

Death is often hidden inAmerica, not witnessed or discussed. As a society we have secluded the reality of this inevitable event.  Today Hospice helps support the end of life process in various setting including the family home which is where historically it was commonplace and witnessed even by the youngest members of the household. They are going to heaven might have been an explanation used to help carry the emotional impact of this final stage of life.  In a way, LTC facilities are leading the way back to openly discussing and dealing with this inevitable ending to life as we know it.   

So you might say that the process of dying in a LTC facility today has been brought out into the light.  Physicians and facility staff work together assertively to maintain comfort and address resident and family needs in timely and effective manner.  In summary, we all share in making the process of dying meaningful and that death is simply a part of life as noted by Greek philosopher Epicurus "The art of living well and the art of dying well are one".


Nancy Karen Culp RN

iNancy Elder Care with Nancy Karen Culp RN. I am an educator, writer and dynamic speaker with extensive experience in Long Term Care. Experienced in the areas of nursing administration, education and training, quality improvement and nursing informatics. Various roles over the years include Director of Nursing Services; Program Director for Nurse Aide Training; Clinical Information Systems Coordinator for Electronic Medical Record development and implementation & HIPAA Privacy Officer. [email protected]