the letter HHospice is not the only “H” word I know.  Hospital bed is the other offensive word.  My sweet, amiable 80 year old patient lashed out at me, “I don’t want a hospital bed, don’t talk about it ever again” in a voice that sounded like Gollum when someone tried to take his “precious”.  “Whoa, I said, “I promise not to mention it again”.  Then she told me how she remembered the last days of her husband’s life, as he lay dying in their living room in his hospital bed.  “Ah”, I thought, “Here is the real crux of the matter”.

We all hold mental images of what we believe to embody dying.  Those dear ones that taught us how it is done may have imprinted a harsh view of the dying process, and not the gentle sigh and closing of eyes that we wish depicted all deaths. Pictures we recall that are never fully dismissed from our mind’s eye.

I listened to another patient who has expressed a perpetual anxiety about his breathing becoming ragged and suffocating, as his lung disease progresses.  When I asked Dennis what he was most fearful about, he began to describe his father’s death, while he was still a very young man.  His father had severe asthma, and he remembers him lying in an oxygen tent, struggling with every breath.  He tells me his one regret is not getting some medicine to put in a handheld inhaler, describing it as a glass bulb filled with some yellow liquid, but  the doctor had told them it didn’t do any good.  His father begged his mother to get more medicine, and when she said no, he begged his sister, and when she said no, he turned to Dennis, and begged him to get the medicine.  And Dennis remembers saying to his father, “The doctor said it didn’t do any good, Dad, and I can’t get it for you.”  All these years later, and his great regret is not advocating for his father, and getting the medicine, even if it was only “To make him feel better because he believed it would.”

And I recall all the stories I have heard over the years, what we wish we could do over, how the last days of some loved one’s life left us marked for all our own life.  Sometimes when I hear these stories, I recognize a teaching moment, and try to encourage a person as they begin their own journey down the path of disability and dying, that the thing feared can be treated, or managed, perhaps even conquered.  Other times I am deeply aware of our experiences that mar our way and have become a part of who we are, and it is not my place to convince, cajole, or insist.

I am an advocate.  Persuading someone to do something they don’t want, this is not my job. But to plead for someone’s cause and speak out for them, this is my job.  If you don’t want the hospital bed, by golly, I won’t mention it again.

About Amy Getter

This entry was posted in advocacy; patient rights; hospice nurse, end of life care and tagged , . Bookmark the permalink.

3 Responses to THE “H” WORD

  1. noreen says:

    another word was the “C” word. “I won’t ever have one of those things in my house,EVER! “


  2. Amy, great insite on understanding peoples fears as they go through this process. We are often left with regret on what we should or should not have done as an advocate for our loved ones. Those decisions will way heavily on our own wishes once it’s our turn. Thanks for sharing the need to understand and provide comfort during the last stages of life. Aimi Medina


  3. Judy Goldthorp says:

    Great post!


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