The Dying Process
This article originally appeared in the August 2023 issue of FOCUS.
The poet W. H. Auden is reported to have said, “I don’t know what will happen before I die, but I know that I won’t like it.” Auden expresses what, I think, many people feel. If we contemplate our own deaths or the deaths of our loved ones, the dominant emotions are usually anxiety and fear. Often these spring from the uncertainty of what the dying process might look like. Many of us simply haven’t been around death very often, and this lack of familiarity leads to worry. Perhaps our apprehensions are not surprising given that our image of death is often shaped by Hollywood or by awful stories we’ve heard. We imagine horrible pain or involuntary bleeding from the mouth or other dramatic and frightening scenarios.
The reality is that the vivid and theatrical representations of death in popular culture and many of the stories that we absorbed around the campfire as kids don’t represent what death will look like for most of us.
While many paths lead to death, and every person’s experience is unique, there is often a fairly predictable course of events in a person’s final days to weeks of life. And, as heartbreaking as death is, those final days to weeks are not as frightening you might be led to believe. By discussing common features and describing a palliative approach to care, we can dispel some of the unhelpful myths surrounding dying and replace them with an informed and less-anxious perspective.
It’s probably worthwhile to point out that the dying process is indeed a process. You’ll often hear people say, “I hope that I just drop dead one day.” While sudden, unexpected deaths are a sad reality, they will not be the path for most of us. Contemporary statistics suggest that 80-90% of us will have an anticipated and gradual death. And, while a gradual decline has its challenges, it’s important to recognize that an anticipated death gives opportunities that a sudden death does not. A slow and expected death opens the possibility to say goodbye, to tie up loose ends, to work towards reconciliation where needed, to extend blessings, to offer words of instruction and hope for the ones leaving behind, and to bear witness to one’s faith in the midst of suffering. As such, the dying process that most of us will experience can be received as a mercy intermingled with grief.
So, what might we expect?
Like birth — the other bookend of life — dying is, in some ways, unique for each person. Sometimes the process is quick, and other times it takes longer. Sometimes the situation is complicated and unavoidably medicalized, and sometimes it simple and happens at home. While the specific details may vary, there are commonalities for most people.
Whether it is due to cancer, organ failure, or frailty, most people’s final days to weeks are marked by increased fatigue and sleep. With a smaller reserve of energy, conversations become shorter, meals become smaller, and the amount of time in bed increases.
Often the dying person will spend more time listening and have less stamina for speaking. Because of this, it doesn’t make sense to wait until the very end to have significant and meaningful conversations. At the time of a life-limiting diagnosis, a patient might be told to “get his affairs in order,” but beyond financial and legal matters, it’s important that he “get his relationships in order.” Important conversations which often fall under the basic categories that Dr. Ira Byock has identified as “Please forgive me,” “I forgive you,” “Thank you,” and “I love you” take energy, and you don’t want to hold out until the final moment to address them.
Appetite often naturally declines in an advanced illness, and this is certainly the case in one’s final days to weeks of life. A dying person simply doesn’t have the desire to eat or drink like she used to. This can be difficult for loved ones to watch. Sometimes they wonder, “Is she starving to death?” or “Is he dying of thirst?” However, reduced intake is an expected phenomenon. Because of our natural, caregiving instinct to bring food to someone who is sick (think of the proverbial chicken soup), caregivers sometimes urge their dying loved one to eat and drink. However, a better approach is to simply ask if they want anything (and to not be surprised if they decline or perhaps want only a taste), to offer food to their loved ones who are keeping vigil, and to channel caregiving into other tangible means (e.g. holding hands, gentle massage, singing, reading).
Accompanying the decreased energy and decreased appetite of the dying process is a reduced level of consciousness. Even if a dying person isn’t sleeping, he might nonetheless seem more distant. This reduced level of awareness is expected and usually not distressing. Even if he seems detached from the immediate environment, there is often a real awareness of sounds and presence — particularly of loved ones. I have been in several situations where a dying patient, who had seemed entirely absent from the conversation I was having with others in the room, suddenly perks up and gives signs of recognition when the voice of a newly arrived family member enters the room.
While we can’t always know whether dying individuals hear what’s around them, we have good reason to suspect that they often are. Hearing is usually the last sense affected by anesthetic before surgery, and patients in comas have reported hearing conversations happening around them before they fully emerge from their altered level of consciousness. So it’s not merely wishful thinking to suppose that a dying person may be aware of the conversation, prayers, and singing in the room.
Another not uncommon phenomenon in a person’s final days to weeks is the “unexpected rally” where the decline in appetite, stamina, and level of consciousness is interrupted with a surprising reversal. A sudden surge of energy leads to a capacity for conversation and activity that recently had appeared all but lost. This is usually short-lived, but it can be embraced as a welcome, if fleeting, gift.
People often worry that their final days will be marked by severe and unrelenting pain or other troubling physical symptoms. While pain, shortness of breath, and other symptoms certainly accompany many advanced diseases, good palliative care can usually control these symptoms very well. Palliative care has many tools in its toolkit — including strong pain medications like opioids — that, while perhaps not eliminating the symptoms entirely, still make them manageable so that they recede into the background. Some worry that opioids hasten death, but when used appropriately, these medications reduce physical suffering without hastening death. In some cases, they actually lengthen life, as untreated pain can cause other complications.
Prognostication is more art than science, and palliative care physicians will be the first to tell you that there is an element of uncertainty in anticipating timelines. While certain indicators and statistics can inform a prognosis, there is unavoidable unpredictability, surprising even the most experienced palliative care teams.
Nonetheless, there are some distinct physical changes that often suggest that a person is in her final hours to short days of life. There is usually a more pronounced reduced level of consciousness accompanied by skin changes and/or breathing changes. The limbs often become cooler and can take on a mottled pattern. The breathing can become irregular or shallow. There can be longer pauses between breaths and sometimes noisy breathing. While these features might be distressing to loved ones, they are not, in and of themselves, uncomfortable for the patient. The skin changes are not painful, and the dying person is usually completely unaware of the noisy breathing — a situation comparable to snoring where the one who is sleeping is oblivious to the noise he is making; it is perhaps more unsettling to the other people who are in the room.
When death comes, it is — unlike the movies — usually gentle. The person simply takes a final breath and doesn’t let it out again. Sometimes a dying person seems to wait until people have left the room to take that final breath. Sometimes they hold on for a surprising length of time — perhaps until a final loved one arrives. Sometimes the body lingers and slowly fades — even when they have emotionally let go and are, by all accounts, completely ready to die. But whatever the particulars, with the help of good palliative care, family support, and spiritual care, death is usually calm and undramatic.
While the majority of deaths still happen in institutions (e.g., hospitals or long-term care facilities), there is a movement to try to relocate death back home — which is where many wish to die. However, it’s important to recognize that—particularly with certain illnesses — care needs sometimes simply cannot be adequately or sustainably managed at home despite the most attentive and supportive care network. Yes, we should try to increase supports to accommodate more deaths at home, but if a home death doesn’t work out, loved ones should not view this as a failure. It’s like birth, where it’s fine to have a birth plan but also wise to hold it loosely, recognizing that some situations are beyond our control and that not all births can or should happen at home.
Some also feel an overwhelming desire to be at the bedside at the moment when their loved one dies. While this is an understandable and perhaps commendable hope, a loved one should not feel that it is a failure if this doesn’t happen. To extend the birth comparison, it is of course usually preferable that a partner and family be present when a baby is born, but sometimes things don’t play out that way. Perhaps there was a preterm labour or a precipitous delivery, preventing everyone from being present. We can acknowledge that family aspires to be at hand for the birth, but what’s more important is that they walk alongside the baby as she grows — loving and supporting her throughout the months and years ahead. Perhaps we can view death the same way but in reverse. While we can acknowledge that loved ones often hope to be present at the time of death, what’s more important is that they are there, loving and supporting the person in the years and months leading up to that point.
The dying process is certainly marked with grief, but it can also be a meaningful time of shared mercies amidst the loss. By dispelling some of the myths and addressing some of the fears surrounding death, we can more confidently enter that space and experience the grace that meets us in our sorrow.