Dr Elisabeth Kubler Ross was a very interesting woman, and early in her career as a psychiatrist, she decided to take the unheard of approach of asking a dying patient directly about their dying. Conventional wisdom of the day was that you did not tell the person they were dying and that everyone else other than the dying person themselves would know what was best for them. Through countless conversations with the dying and with their loved ones, Dr Kubler Ross came to realize that there appeared to be a commonality of experiences among them as they faced a variety of overwhelming emotions. She initially described these as the 5 stages of grief but later regretted that description because others viewed and interpreted the stages as a strict linear development, each stage entered and finished before moving on to the next. But Dr Kubler Ross herself said that people dealing with death and dying walk through these stages on their own individual timeline, going back and forth between them, sometimes even skipping stages. The commonality of these experiences did strike a chord with most, however, and the 5 stages of grief remain as a clue to understanding where someone may be in the process in order to best approach, reach out, and understand how to help, someone in the midst of their grieving. The 5 stages of grief are: denial, anger, bargaining, depression, and acceptance.
Denial can be difficult for the person experiencing it as well as for the people who must work around it. If your patient denies they are dying you can’t just say ‘yes, you are’. If you do, they will get very angry and you won’t be their nurse anymore. If a spouse doesn’t want to call the children to tell them that their mother is actively dying because he doesn’t want to needlessly scare them, then you offer to make the call for him. If your father doesn’t want to open up about dying, because in his words ‘I’m not dead yet!’, then you leave the door open with ‘well, when you’re ready then’. You can’t push, nudge, or yank, anyone out of this stage until they themselves are ready. But you can try to understand where they are, and not take it personally or try to snap back. Denial can be a safe place to hide until you are ready to face what’s ahead.
Denial I noticed, came in many different forms. Frequently, extended family and friends wanted to reach out to the dying person, but felt extremely uncomfortable in doing so. Some simply got their updates from others but never called or visited themselves. Not because they didn’t care, but because there was no urgency as to the severity of the situation. Some managed to visit, but hid behind bundles of Get Well balloons and uncomfortable conversations about how well the person looked and all the things the person would do in the future. When the delivery person from hospice arrived that October afternoon with an oxygen concentrator for my dad, who was now unconscious and unresponsive, my brother in law engaged him with question after question about what we were to do should there be an ice storm in December knocking the power lines out. And I’ve often wondered whether the hospital doctors who order blood work and tests just hours before sending a patient off with hospice are working from a place of denial or a true belief that they can change the direction of the disease. But the most painful example of denial that I experienced was the wife of a patient who insisted that her husband be strapped onto his exercise bike in the hopes that she could retain muscle memory in his arms and legs for when ‘he got better’. This apparently had been a therapy that had been tried much earlier before his terminal diagnosis, when his muscle weakness had gotten progressively worse and no one could figure out why. Her husband told me that she had never accepted the diagnosis or the fact that he was dying. She chose to act as if the hospice house was simply another treatment center. She didn’t talk with the nurses, but would leave lists of things she wanted accomplished during his stay. Her husband, who himself was in the acceptance stage, would sneak a wink at staff as his wife would toss out her requests for the day, as if to hotel staff, and then be out the door, never staying long enough in the room to see the nurses or aides feed, bathe, dress or reposition him. His home nurse came in one day to visit and later shared that his wife really was quite devoted, and if there were power in her denying his dying then he surely would have walked out that door as his own patients sorely missed him.
To read more on the 5 stages of grief….and for an eye opening read on doctors’ denial or you can view this excellent Frontline piece regarding doctors’ discomfort informing their dying patients about realistic expectations..