The Unpredictable Work of Dying

jeastridge, BSN, RN

"How long will it be?" my patient asked at the end of the admission process to hospice. She whispered the question as I leaned over to say good-bye. Hoorifice because of recent radiation to her throat cancer, she struggled to gasp out the question. I squeezed her hand and told her the honest truth, "I don't know, but I do know this: we will be honest with you and let you know when we see changes that could indicate that the time is closer." Emma seemed satisfied with the words I offered and by the honesty they conveyed. After all, being straightforward with compassion is a gift that hospice can offer their patients, a gift that is muffled in layers of treatment and uncertainty through much of the diagnosis and illness stage of terminal disease.

I came back to see Emma about 10 days later for a prn visit. I found her much changed and only semi-conscious. Unable to speak, she looked pleadingly at me and her eyes voiced the anguish that we could only dimly perceive. Answering her unspoken question, I whispered into her ear, "It won't be very long now. We are with you. Your family is here. How can I help you now?" She almost imperceptibly shook her head and looked toward the wall, closing her eyes.

But things did not proceed smoothly for Emma. Her primary nurse shared with me that she lingered on much longer than expected, barely breathing, not eating or drinking for 10 more days. The family, exhausted, kept asking us why it was taking so long? "What can we do to help her?" We continued to medicate her on a regular basis and we walked down that road with her, so we felt fairly confident that she wasn't suffering a lot of pain, but there is no denying, however much we wish it weren't so, that lingering for a long time at the point of death involves suffering for everyone involved-the patient, the family and yes, even the nurses.

If you take a poll of the people around you and ask them about their "ideal" way to die, you will likely get a variety of answers but probably one main theme: almost everyone wants to "die in their sleep" or "just not wake up one morning." While these visions are understandable and probably consistent with the normal human desire to evade suffering and pain, they do not often mesh with the reality that we find as nurses. Dying can be hard. It can take time and work. The process can be painful for everyone involved, leaving the survivors with at least extreme fatigue and often with burdens of guilt, sometimes akin to PTSD.

How can we help people the dying and their families survive an unpredictable process with a certain outcome?

Honesty

As nurses dealing with the dying, compassionate honesty is key. Notice that "the blunt truth" is not the same thing as "compassionate honesty." Telling someone the potentially difficult details of what lies ahead is more akin to punishment than help. But telling someone what we do know, as it becomes evident, can be helpful. Some patients don't want to talk about any of the process and we must respect and honor that. Some want more certainty than we can honestly offer and we have to tell them that, too. But hospice does have the great benefit of helping all involved to be on the same page with what is happening, especially as the patient transitions into active dying.

Offer hope

As long as there is life, there is hope. Talking about hope is not the same thing as proposing "false hope" which can be defined at "pie in the sky" mentality. Hope can mean a lot of different things: hope that today will be a good day; hope that a loved one will call; hope that the pain will be less on the new schedule. There is always something to look at with a hopeful attitude.

Educate

(as desired by patient and family)

As hospice nurses, provide general info about the dying process. Some hospice agencies have booklets that they give patients, to be read as desired, if desired. The booklets talk about specifics related to the dying process and also about potentially helpful interventions to promote comfort. Education involves planning ahead as much a possible. Asking the patient and family about their goals at the end of life is essential in helping everyone involved face the impending change. Having the POST forms signed, the designated medical power of attorney-all of this can add peace and a more settled atmosphere.

Monitor word choice carefully

Author K. Ann Smith writes in her blog post, "Didn't they understand that I was tortured by the word "fighting"? They said "your mom is fighting" and I heard "Your mom is fighting to live while you've agreed to withhold food and water so she'll die." They said "fighting" and I translated that one word into, "Your mom is fighting, but you're furious because she isn't dying fast enough." They said "fighting" and I felt they were asking me "why aren't you helping your mother?" [KevinMD.com 8/8/16] As we accompany the dying and their families, we have a sacred responsibility to be empathetic and compassionate, especially in our word choices. When death does not come on our pre-determined personal schedule or as expected by the law of averages, we have to hold our feelings very carefully in check, not allowing any sense of failure to leak out onto the situation. Part of that is not being too specific about what to expect, as patients and families may put more stock in our specific words than we recognize. Instead we err on the side of pulling back the long train of words that threaten to erupt from our mouths, words born of long hours of experience. Yes, we do know a lot, but we don't know everything. Only God knows how long it will be for sure.

Acknowledge that dying can be hard work

The image of our loved one saying their final words and gently closing their eyes to pass on is appealing but rarely matches reality. While premature death can be much too sudden-here one breath and gone the next-the more common transition to death involves days and sometimes even months of gradual decline.

Death can be hard work.The final accomplishment of our lives-the process of dying-is rarely effortless and seems to have times when the mystery of the beyond speaks loudly into a space that we wish we could control. In the end, mystery prevails and we submit to it and do our best to work with what we know, in the here and now, helping our patients ease on in their time and in their way.