Not too long ago an Elder at our church asked me to visit a parishioner because her husband, the primary caregiver, was concerned about the change in his wife’s behavior for taking medications and eating. She was spitting out the medications and had stopped eating. As acute care nurses, the goal is to provide optimal care that increases the quality of life for our patients. I discussed with him various ways to give medications, her favorite foods, and different ways to keep her comfortable. When she passed away three day later, I wondered what I could have done differently or better. I was haunted by this encounter for quite some time.
As a currently practicing hospice nurse, I now understand that this lovely lady was in the last stages of the dying process, a significant decline in life functions toward her transition to her heavenly reward. As acute care nurses we are so focused on assisting people to get better, we miss the various indications of the body shutting down, if we know them at all. Below is a list of signs and symptoms of the last stages of the dying process.
Decrease in the need for food or drink
Spitting out food/medications, or pocketing them in cheeks
Loss of leg movement and change in the color of feet and legs
Increase in sleep with increasing difficulty in arousal
Voice weakness and decreased vocalizations
Increased restlessness, pull/picking at clothing and bedding
Periods of apnea when resting (10-20 seconds is common)
Decreased urinary output/incontinence
Increased confusion about familiar things and persons
Decreased hearing or vision with hearing being the last sense to go.
It is optimal to bring hospice support in as soon as the person or designated responsible person decides treatments are futile. Additionally if the dying person will not go to the hospital/ER any longer, has frequent infections, or has one of these signs or symptoms, it is time to prepare for the death of the person. Hospice nurses can detect these signs and symptoms quickly and assist in helping with the comfort of the person and the family. The hospice team can assist in many areas of care including bathing, legal paperwork, listening to the family, and offering spiritual help. Different medications can be ordered and effective equipment can be put into place for patient comfort and ease of care. The beauty of hospice in America, is that the philosophy of care can be accomplished in private homes, health care facilities or hospice houses. Teaching is the first and foremost role of the nurse so that the primary caregiver can be confident in the care and the care receiver can be made as comfortable as possible.
Even though my suggestions for my parishioner and her husband were well founded and positive, I still grieve because I could have helped to arranged for hospice service for this woman and her family in her last days. Now as I talk to families, I start teaching about the dying process and the wonderful end-of-life care delivered by hospice team members.
Hope Knight RN, MS, Parish Nurse
Parish Nurse District Representative for Oklahoma