Of life’s few certainties, death is one. Yet for most people, death can be an incredibly complex experience especially when we are on the peripheral of someones else's impending death. Some may want to keep the dying person alive for as long as possible for fear of life without them, others may want the dying person to experience relief in the form of death—and then of course, there are the wishes of the dying individual.
As people approach the end of their lives there are mental and physical indicators that death is near. While these indicators may not make saying goodbye any easier, they can help us compassionately aid the dying person by understanding the signs and stages of dying. To obtain a better understanding of these signs and stages, we spoke to psychotherapist and social worker Linda Hochstetler, author of 21 Days to Die: The Canadian Guide to End-of-Life about what to look for, and how we can provide support to the dying individual.
What inspired you to educate people about the signs and stages of dying?
I have sat with hundreds of families as they have watched their loved ones dying, and most had no idea what was going on. I was shocked to learn that most people don’t know the signs and stages of death. As a result, family members often made poor decisions that increased the suffering for themselves and the dying person. They also told terrible stories about what was happening that left them feeling regret and guilt. This seems so unnecessary. In the cases where dying people and their caregivers were able to acknowledge dying and have appropriate conversations around this, there was less suffering for all.
What are the signs and stages of dying?
The body shuts down in similar ways, regardless of the disease or cause. It starts with extreme fatigue, which makes it hard to work or take care of oneself. This stage can last weeks or even years. The dying process really intensifies when the legs can no longer support the body. As the kidneys shut down, water is drained from the muscles in the legs and arms and centralizes in the torso creating a spider-like appearance. This stage often begins with a fall on the way to the washroom. Falls at this stage must be prevented at all costs, as the body can no longer heal itself and broken bones and concussions have lasting consequences. Once a person can no longer walk, personal care must be 24/7 to facilitate toileting needs. Next, the muscles that facilitate swallowing decrease, and food often slides into the lungs rather than the esophagus. At this point, all eating ceases to prevent aspiration pneumonia. Next, drinking water ceases, and there is nothing given by mouth (called NPO – nil per os, in Latin). Mouth care is provided with ice chips, water by sponge, and moisturizer, but nothing more is being drank. And finally even breathing stops.
How does integrating hospice and palliative care into your final days aid in the dying process?
A hospital is an ideal place for people to receive treatment, but it is noisy and busy, with necessary rules to facilitate large numbers of individuals. Location matters at end of life, when quiet and serene spaces provide peace and calm while waiting for the end. Most hospitals have special palliative care beds that include private rooms and specialized volunteer services, and often even access to outdoors. Residential hospices in Ontario usually have only 10 beds and are especially set up for the needs of dying people. They have access to nature, light, and include spaces for loved ones to visit and sleepover. Visiting hospice services that come to private homes add non-medical support and guides to the process. Services are provided to dying people and their caregivers as well, so everyone is well-informed of where they are in the dying process.
Palliative care is a new specialty, and it is worthwhile being cared for by trained palliative care doctors, nurses, social workers, chaplains, personal support workers, and volunteers. Palliative care provides holistic symptom management that eases many of the discomforts of dying. Collectively these people are guides to the dying process, and they facilitate discussions around dying conversations and choices. They ensure that dying is ‘patient-centred’ and reflects the final wishes of the dying person.
For those who are experiencing the impending loss of a loved one, how can understanding the signs and stages of dying be beneficial?
Dying people know what’s going on, even if people around them aren’t willing to talk about it or tell them. Understanding the signs and stages of dying can open up meaningful conversations that provide profound resolutions. Families in denial of impending death sometimes wait too long to ask questions about final wishes or express love and thanks for the last time. Decisions such as taking time off work and travel arrangements are best made understanding where one is in the dying process. While early on in a disease it might be hard to know how close to death one is, nearer to the end the stages are much clearer.
What is your advice for caregivers navigating those final 21 days?
Consider the final 21 days as precious opportunities to spend time together. Recognize that one is never ready for the end, but if final conversations have been had recently, stories have been retold a final time, and love has been expressed, then it is easier to grieve with sadness and not guilt. The final 21 days may seem to go slowly when in them, with lots of waiting and watching, and yet there is an end to them. Appreciate them and be curious about some of the strange phenomena that appear during this time that might show portals to other ways of humans connecting. Slow down and allow yourself to ponder some of the deeper mysteries of life.
What are common myths about death and dying?
One of the most common myths is that feeding a dying person will keep them alive. Food is life-sustaining until the end. Constipation is a common problem that is increased as a side effect of pain medications, and eating familiar foods (even healthy ones!) can cause pain and discomfort. Force feeding loved ones whose swallowing muscles have stopped working can lead to aspiration pneumonia. Allow the dying person to decide what they want and how much, without feeling guilty or responsible for your discomfort.
Another common myth is that dying people are in comas. At some stage, every dying person becomes unresponsive to stimuli in this world. It starts with losing interest in their old life, and continues to lack of response to the senses. Sometimes responsiveness comes and goes throughout a day or week. I have had lots of dying people return to responsiveness and report being aware of conversations and situations in the room (and even out of the room!) that they appeared to be sleeping through. For this reason, family members are encouraged to speak and carry on as if they are hearing and experiencing everything, right up to the final breath. We encourage touching and saying words of love and reassurance.
A final myth is that people die of pain medicine overdoses. Truly, people die of diseases. They may die shortly after being given some pain medicine, but it is not the medicine that kills them. Sometimes medication relaxes breathing enough to die in that moment, but that doesn’t mean they received too much medicine. Or that the caregiver caused the death. Diseases kill people and let’s change our language and stories to reflect this.
What can we learn about mortality by understanding the signs and stages of dying?
By understanding the signs and stages of death we can learn to be present with death. We can hold our hearts open in love even as we watch a loved one slip away from us. We can limit our fear of death and learn to accept what happens to everyone. We can sit quietly in the space of waiting and wondering and slow down to ponder the bigger meaning of life that we often run from. Whatever we decide life is all about, we can take the opportunity to be fully present and make the best decisions possible for that moment, and live with no regrets.
For a more in-depth look at the signs and stages of dying, we recommend purchasing Linda’s book 21 Days to Die: The Canadian Guide to End-of-Life which features 18 practical lists summarizing key points from the book, and more than 35 essential Canadian end-of-life resources for navigating ones final days.