When Death is Near
This is certainly not a comprehensive list of the characteristics of end-of-life, however, we hope it will give you some sense of what may happen as your loved one approaches death. We encourage you to ask questions and seek clarification from healthcare providers if there is behaviour or symptoms that you do not understand, particularly if they are causing you or your person unrest or discomfort.
- The Dying Process
- Changes in Appetite
- Changes in Skin
- Changes in Sleep
- Changes in Eyes, Nose, and Mouth
- Cheyne-Stokes Respiration or the Death Rattle
- Changes in Behaviour
- Life Surge and Terminal Lucidity
1. The Dying Process
According to Katherine Arnup’s 2013 report for the Vanier Institute, “Most people, even today, have not been with someone who is dying or have not seen a dead person until well into middle age.” These days much of our exposure to death comes from popular culture. Caregivers sometimes say they are glad to have witnessed their loved one’s death because they don’t have to rely on someone else’s account of it. Others find death too painful and do not feel they can be present. The article How to Recognize When Your Loved One is Dying may help with your understanding of the process.
Kathryn Mannix, a palliative care physician in the UK, notes that some deaths are so very gentle that family in the room are not even aware that the death has occurred. She has an 8-minute video What is Death Like? that explains some of the mysterious characteristics of a death—some of which can be disturbing—helping you understand what the characteristics represent.
As you watch your loved one moving toward death, you may have many questions. Will they struggle? Will they be afraid? Are they weary of being ill and welcoming of death?
Not even healthcare providers can predict accurately what a death will be like or when it will take place. Nevertheless, there are signs that may be somewhat reliable: when thinking about how long a terminally ill person may live, keep in mind three important domains - eating, sleeping, and energy level. If you see changes in these domains monthly, your person may have months remaining in their life. If weekly, they will likely have weeks or a few months left. And if the changes are daily, there are probably only days remaining.
The Palliative Performance Scale (version 2), or PPS, is a communication tool used to help identify the status of a person whose condition is changing. You may find it helpful for two reasons. First, it will assist you in focusing your observations on the types of predictive behaviour identified above. Secondly, it will help you to describe your care recipient’s condition to their healthcare providers.
Oftentimes, care recipients perk up or muster their energy and can appear to be better than they actually are when a stranger is around. Although your loved one may demonstrate and report on their condition so as to lead the visiting nurse to identify a PPS of 70%, your observation for most of the day may indicate a PPS of 50%. This is vital information for healthcare providers. Remember, your input is important - you have the long view and they may see your person only intermittently.
Another useful tool is the Edmonton Symptom Assessment Scale or ESAS. It is intended for the care recipient’s use in a self-assessment of their symptoms. If the scores for each aspect of wellbeing is low with only a couple of exceptions of high scores, it can help determine where more effort could be concentrated to help your person to be more comfortable. However, if your person is unable to speak for themselves, this tool may help you, the care giver, report to healthcare providers your observations. Again, we must stress the importance of the caregiver’s perspective.
One of the best sources of information on this topic is Preparing for Death and Dying, produced by the Province of Nova Scotia.
2. Changes in Appetite
As we stated in the section Living and Dying at home: Symptom Management; 7.6 Weight Loss
3. Changes in Skin
Decreased circulation may result in changes in the temperature and appearance of your person’s skin. The article Mottled Skin Before Death: What Is It? may answer some of your questions.
4. Changes in Sleep
As a person approaches death, they will probably sleep more. Sometimes you will not be able to wake them, but this is not cause for alarm. If this happens, they may still be able to hear everything around them but are just too tired to respond.
Continue to talk with your loved one as your voice may be comforting. It is important that you do not say anything you wouldn’t want the person to hear. Some people have periods of unconsciousness and may regain their alertness feeling rested, unaware that you have been concerned at not being able to rouse them.
5. Changes in Eyes, Nose, and Mouth
When fluid intake decreases and body function changes, the eyes, nose, and mouth become dry. In particular, as muscles relax they may breathe through their mouth more often. Your local pharmacy will stock drops and sprays to keep tissues moistened and the person more comfortable. If your care recipient is no longer able to take food or drink by mouth, swabs can be used to moisten the mouth without a choking risk. Please ask your healthcare provider for their recommendations.
6. Cheyne-Stokes Respiration or the Death Rattle
Some of us may remember our grandmother referring to the ‘death rattle’ while shaking her head, indicating a sombre situation. The article Death Rattle When Someone is Dying will shed light on how this breathing pattern relates to end-of-life.
A long-term care worker explained that it is more uncomfortable for family to hear this breathing pattern than it is for their person to experience it. If you haven’t already, watch the video What is Death Like? It indicates that Cheyne-Stokes respirations are actually a sign that your person is very relaxed and in no pain.
7. Changes in Behaviour
At end-of-life, some people become quieter. They may withdraw from conversation, no longer communicate verbally, and show little or no interest in visitors. Maybe they are conserving precious energy, holding on until an absent loved one is able to make it to their bedside.
Other people at end-of-life may become restless and anxious, pulling at bedding or their pajamas, speaking in a way that is uncharacteristic about loved ones who are long dead. The article Nearing death awareness may help prepare you for some aspects of end-of-life that are unexpected (unexpected because few people talk about them).
In her book With the End in Mind: Dying, Death and Wisdom in the Age of Denial, Katherine Mannix says that some people who are dying will talk about getting ready for a trip. Some express an urgency to catch their train or get tickets. Mannix urges us to allow them to talk, even ask questions about where they are going and who they are planning to see. If they can tell you what is at the root of their urgent feeling, you may be able to reassure them that everything is as it should be.
8. Life Surge and Terminal Lucidity
Sometimes a person who is dying will have a surge of energy. Their appetite may return, they seem alert and ready to engage with others in ways that may lead you to believe that they are recovering from their condition. Alas, the life surge or terminal lucidity usually only lasts hours or days. The mystery of end-of-life rallies will explain many aspects of this stage of the dying process: “ ...as organs shut down, they can release a steroid-like compound that briefly rouses the body.”
Caregiver Tips
This video from Marie Curie, a hospice organization in the UK, begins with a nurse describing some of the changes you may see in your loved one. But at the 1:35 mark, caregivers share their stories of caring for their person through death.
Many caregivers exhaust themselves keeping a round the clock vigil at the bedside, wanting so badly to be there for their person’s last breath. It is difficult to tell when that moment will be and a very frail body, barely clinging to life, holds on sometimes for weeks. You have been with the person through a lot and you may be highly motivated to be with them through to the end of life. Although that is a loving pursuit, it leaves the caregiver exhausted and struggling to cope with the huge emotions to come.
Hospital workers have reported that often, it is when the caregiver walks down to the cafeteria for a meal, or goes home for a shower, the person will die. Some speculate that perhaps they person doesn’t want their caregiver’s last image of themselves to be their death. Others will say that some wish for privacy as they die.
The article Dancing With My Mother’s Death may inspire your thinking in ways to acknowledge your loved one’s death if you are not there in that moment.