Managing symptoms other than pain: How to reduce end of life suffering
By Eileen T Geller, RN, BSN
"It is only when we truly understand that we have a limited time on earth... that we will then begin to live each day to the fullest, as if it is the only one we had." - Elisabeth Kubler-Ross, MD
The diagnosis of a life-threatening illness can evoke considerable emotional and psychological distress- both for the person who is ill, but also for family, friends, and community.
Since we no longer live in extended intergenerational communities, many of us lack the learned intergenerational wisdom and lived experience previous generations gained from watching parents and grandparents live with real dignity and die naturally and comfortably. And because many of us have never seen someone die, we are unacquainted with even the rubrics of 'what happens' between illness and death.
Unfortunately, much of what we do know is inaccurate, coming as it does from very unhelpful television dramatizations such as ER, which tend to show life and death in unrealistic and overly traumatic ways. Perhaps, in addition, some of us are wounded from having experienced the sorrowfully unnecessarily uncomfortable death of someone we love, either in the distant or not-too-distant past.
These experiences doubtless color our fear of life's end, sometimes causing troubling introspection, even depression, or a consideration of assisted suicide. NOTE: If you or someone you care about is considering suicide, please call 911 or the suicide hotline immediately. For more general information about suicide prevention, click here.
Fear of physical pain and other uncomfortable end of life symptoms are a source of worry and consternation among people with life limiting illnesses or their family members. Shortness of breath and diarrhea, among other symptoms, and physical pain are also worrisome.
So, are such uncomfortable symptoms the norm? More importantly, can they be controlled?
Dr Ira Byock, former chairman of the Academy of Hospice Physicians, and author of several excellent end of life books, notes that 'in all cases the physical distress of the dying can be controlled."
That has been my experience as well. As a hospice nurse who has cared for thousands of dying persons and their families over the last 25 years, as a caregiver for dying grandparents and other loved ones, I have witnessed many deaths, most of which have been peaceful, natural, and comfortable. The rare exceptions have been in situations where some emotional of physical discomfort did occur, which was not completely controlled, but was mostly alleviated through the appropriate use of medications, hospice care, and compassionate presence.
I have cared for family members who have died from diagnoses as divergent as pancreatic cancer, end stage respiratory disease, stroke, heart disease, and old age/dementia. In each of these cases, symptoms ranging from severe shortness of breath, to diarrhea and abdominal distention, to heart failure, and memory loss have been alleviated with good hospice and palliative care, the provision of comfort medications, and compassionate accompaniment. For more information about the control of non-pain symptoms related to end stage diseases, please consult the National Hospice and Palliative Care. Also, if you or your health care provider is in need of additional assistance, one excellent clinical resource is Symptom Management Algorithms: A Handbook of Palliative Care, by Linda Wrede-Seaman, MD.
Remember: the emotional component of pain is sometimes even more important than the physical. People who are dying need to know they are not a burden to the living-they need to know they will be cared for, not abandoned to die alone.
This web site offers general information rather than medical, social service, or mental health advice. For specific information about medications or to obtain pain control assistance or symptom management for you or someone you care about, please consult with your physician, hospice professional , or other qualified health care provider.
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