By Linda Hochstetler, MSW RSW, author of 21 Days to Die: The Canadian Guide to End-of-Life. Publish date of October 13, 2021. Click here to preorder book (with 20% discount).
What would it be like if you recognized that your family member had only 21 days left to live? Would you make any different decisions together? Would their values be any different? Would they want anything different from you? Can you imagine the fearlessness it takes to look death in the face, knowing your family members has only 21 days left to live?
For most people with advancing diseases, there are signs that death will be soon. Diseases have many trajectories, but at a certain stage, the ceasing of life becomes certain. At 21 days, there are usually no more treatment options with any real promise of quality of life. At 21 days, there is usually no chance of recovery or reprieve.
21 days is not the precise number of days to recognize all deaths, and I do not mean to imply that death can be managed or needs to be predicted precisely. Death is a mystery, and we don’t want to take all of the mystery away. However, there are a number of signs of impending death and they follow in a predictable sequence. It is my wish that all Canadians will come to recognize these signs. Together we can share this information and be ready to welcome death when the time is right.
For most people, the best preparation for one’s own death is being a supportive family member of a loved one. Being one step removed from death allows one to step back and see the stages. First the dying person’s energy drops, and it’s impossible to do as much as they used to. Next, the legs stop working and falls happen unless the dying person agrees to stay in bed all the time. After this, swallowing becomes harder and the dying person stops eating completely. After this, even drinking water becomes impossible as the dying person relies solely on water in the body. And finally, the breath ceases, as the dying person lets go into death.
As a family member, it is helpful to remember that the dying person is seeing all these stages as well. It’s no secret, even to a dying person who’s never studied the dying process, that dying is imminent. Hopefully, the dying person will have a team of healthcare professionals (palliative care doctors, nurses, and PSW’s) around to help support the breakdown of the body. If you’re fortunate, you’ll also seek out spiritual care chaplains, social workers, and maybe even a death doula to address the spiritual and emotional parts of the process. These guides can be accessed in hospital, in residential hospices, and often even at home, although you may need to ask specifically for the referral, or even pay out of pocket for the services. Guides are useful not only for the dying person, but also for the loved ones.
In addition to professional help, there is plenty that a family member can do assist the dying person. The most important part is being with the dying person, and slowing down to just hold the space. This means sitting quietly, not requiring the dying person to do anything for you, At end of life, the attitude of acceptance and not trying to change the movement toward death can be calming and helpful. This can be hard for a loved one, who desperately wants the family member to stay alive, but the pressure can be intense, awkward, and too much for the dying person.
Within the context of acceptance of death, there may be some things that you can also do and that still feel good to the dying person, like gentle touch, such as hand-holding, massaging feet, or gently laying a hand on a head or arm. The dying person may also like to have their hair brushed or fingers run through their hair. Be aware that sensitivity is often heightened at end of life, and temperature is critical (both too hot or too cold), skin is papery and bruises easily, and food and drink is best appreciated closer to room temperature.
There are also things are best not to do around a dying person. One of the topics that comes up almost universally is the struggle to watch the dying person stop eating. Eating is thought of the thing that keeps people alive, as if it’s an intervention itself, and family members worry that stopping eating is painful, like it is when we’re living fully. But it’s not like that for the dying person. Stopping eating happens for everyone at some stage of dying, often weeks before death, but sometimes only hours before. Eating can be painful in the final 21 days because the body often can no longer swallow food or digest it properly. This is a natural process and no cause for alarm. It is helpful to let the dying person decide whether they want to eat, how much, and when they are ready to stop completely.
Hopefully, collectively you see the final 21 days coming, and as a family you have said everything you want to say to each other before you reach this point. The final 21 days are often spent floating in and out of responsiveness, regardless of the amount of pain medication administered, and it may no longer be possible to have deep and profound conversations. Unlike in films, final conversations are most often about symptoms and bodily functions and not relational. The time for those conversations is long before the end.
Dr. Ira Byock, a palliative care doctor and writer of 4 Things That Matter Most, encourages conversations that include 1. Please forgive me. 2. I forgive you. 3. Thank you. 4. I love you. These seminal conversations allow for closure and prepare a family to part with no regrets.
Coming together around a dying person need not be a traumatic experience. Rather, it can bring together a family and help everyone celebrate a life well lived. Talking about death and facing it together requires only a bravery and a fearlessness to do and experience what countless generations have been doing for eons.