There are phrases uttered so frequently by family members holding vigil at the bedside of a loved one that I have begun to anticipate the words before they are even whispered.
Probably the most common words I hear are, “We just don’t want him suffer” or “I know she is suffering, can’t we do something?”
“Suffering” is tossed out so easily that the question becomes, what is suffering? It may be a deep rooted fear we have as humans, but what is it?
My favorite definition comes from Eric Cassell, a physician who has written books on the topic. He says that “suffering occurs when an impending destruction of the person is perceived”. This implies several things about suffering. First of all, it is personal. Suffering occurs to us individually. Second, the word destruction implies something beyond repair. In other words if I get a paper cut, I may have pain, but the cut is not devastating, it won’t cause suffering. Third, suffering often starts before the threat. It’s as if we are anticipating what ever it is that will cause the destruction. Finally, something doesn’t have to be tangible to cause suffering. Sometimes just the idea of it can cause pain.
I sat with Mr. H as his wife went through the dying process. She was in her 40’s with an aggressive cancer. He and their teenage children sat huddled around the bed as she slept. Her brow was peaceful, her breathing unlabored. She appeared in a deep sleep. As Mr. H stroked his wife’s hand the familiar words were uttered, “I just can’t take this anymore. She is suffering too much.”
Knowing now what the definition of suffering is, who would you say was actually suffering? The impending destruction or the anticipation of permanent separation and loss was being felt by Mr. H. It was he, who suffered. His wife was no longer even aware of her situation, thus unable to perceive what was soon to come.
This may be an epiphany, but much of the suffering surrounding the dying process is done by the family and not the patient. Often, like Mr. H, the family suffers in anticipation of loss. Other times, ironically, families suffer because they assume their loved one is suffering.
Remember though, that suffering requires awareness; someone must be able to consciously process all those perceived and real threats to self. During the active dying phase that awareness is usually gone. Suffering then rarely occurs to the patient those last hours and days.
As for other types of suffering prior to that transition, we can intervene medically. Physical symptoms of pain or breathing distress that potentially could cause suffering are easily treated. Though more difficult, even the emotional suffering done as a patient anticipates their own death can be treated with medication.
To expect that hospice will treat suffering that occurs in a dying patient is obvious, but what is unrealized, is that hospice also treats suffering of family members. The ultimate irony is that the common phrases I hear families mention about their loved ones are what alert me to the suffering of the family itself.
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