I know that this post’s title is awkward, but these are the terms I used when searching for information when my father was dying.I knew nothing about the process he was undergoing, but then when would I have learned about dying? The basics of conception, gestation, and birth are covered in health courses, but not dying. So I started looking for answers. If the post’s title’s phrases have brought you here, I hope you’ll find these notes useful.
Nearing the End of Life
There’s a lot of good material in Nearing the End of Life: A Guide for Relatives and Friends of the Dying by Sue Brayne and Dr. Peter Fenwick in association with the Clinical Neuroscience Division of the University of Southhampton (UK). Dr. Fenwick is a leading researcher in End-of-Life Experiences and their importance for the dying and the bereaved, a topic of interest to me.
This document describes the physical signs of impending death, but is especially concerned with the psychological conditions of both the dying and the bereaved. Sections include advice on what people need as they reach the ends of their lives, how to talk with them, what to do if you can’t be with them, different types of end-of-life experiences that may — or may not — occur, and what to expect at the moment of death, noting that even though it’s impossible to predict how much longer a person has, the actual moment of death is just that– a moment–that is quickly over and easily missed.
How Much Longer?
One of the first things I found out was that when hospice nurses told me they could not tell me if my father would live for another day, or week, or month, they weren’t being evasive or attempting to make sure I wouldn’t blame them for telling me he had a week, when he had a day, or vice versa. Some doctors and nurses told me that their intuition about how long before a person died was generally, but not always, correct, but they couldn’t explain it.
As I read more about this I was surprised to learn that the “term ‘final hours’ refer to the last four to 48 hours of life“; this seems to me a fairly wide range of time.
Care at the Time of Death
As best I can there’s no formula to use to predict how many hours or days remain. It’s not like you can plug respiration, pulse, blood pressure, and temperature into an equation and get a timeframe. But I finally found an article that presents data collected regarding several signs of impeding death, Elizabeth Ford Pitorak’s article “Care at the Time of Death,” part of a series on palliative nursing published in the American Journal of Nursing. The goal of palliative care is providing relief to a terminally-ill person through symptom management and pain management. Pitorak reviews one study of a 100 terminal cancer patients that reported:
the death rattle (if it developed) occurred first at a mean of 57 hours before death and was followed by respiration with mandibular movement at a mean of 7.6 hours before death. Cyanosis of extremities took place at a mean of 5.1 hours before death, and pulselessness on the radial artery occurred next at a mean of 2.6 hours before death. Consciousness was measured using a categorical scale of awake–drowsy–comatose. At one week before death, 56% of the patients were awake, 44% were drowsy, and none was comatose; in the final six hours of life, 8% were awake, 42% were drowsy, and 50% were comatose. . .
I’ll try to save you searching glossaries: The death rattle is a gurgling sound. Mandibular movement refers to the jaw moving, like someone is eating air. Cyanosis of extremities means that arms and legs may become cool to the touch and bluish. The radial artery is where a pulse is felt on the wrist.
(Note, however, that this study considered only people dying of cancer, not for other reasons. See “Predicting Active Dying” for more about this.)
Unlike “Nearing the End of Life,” intended for people inexperienced with death and dying, the audience for “Care at the Time of Death” is nurses working with terminal patients. You can learn a lot from reading what isn’t necessarily intended for your eyes. Consider this passage:
Written information, such as pamphlets, can be provided, but should be regarded as supplementary (see Final Days, page 47). Family members usually do not understand the implications of some of the observable changes, and these should be explained. For example, a primary nurse may tell the family that mottling is increasing, the patient is becoming less responsive, and his blood pressure is decreasing— and family members who have been sitting vigil continuously might decide to go home to rest, unaware that what they have just been told indicates that their loved one will probably die within the next few hours.
I appreciate Pitorak reminding her readers — experienced nurses — how easily people in one field forget that their language and knowledge are not universally understood.
Growth House, Inc. : Here’s a source I came across very recently that I intend to look at soon. Its mission statement suggests it should be a good place to begin reading about this topic:
Our Mission: Growth House, Inc., provides education about life-threatening illness and end of life care. Our primary mission is to improve the quality of compassionate care for people who are dying through public education and global professional collaboration. Our search engine gives you access to the Internet’s most comprehensive collection of reviewed resources for end-of-life care.
Duke Institute on Care at the End of Life: This useful site has its own list of resources to follow up.