In the final phase of progressive life-limiting illness, patients and families face changes, challenges and choices that are unfamiliar and can seem overwhelming. This article offers information about what might be expected as death nears.
When a death is expected to occur within hours or days, the focus of care is usually on maintaining the person’s comfort rather than pursuing tests and treatments. At this time, families may want to consider if there are important cultural, spiritual or religious rituals that should happen just prior to death or at the time of death. If so, it is helpful to inform those who will participate and notify the health care team as required.
A Common Concern: Will Pain Worsen As Death Nears?
Pain is often experienced by those with serious illness, leading to concerns that pain will steadily worsen and be poorly controlled as death nears. They may think: “If I have this pain now, and I’m not near dying, how bad will it be when I am closer to dying?”
Death as depicted on television and in the movies contributes to this perception. In reality, however, pain tends to behave consistently for a person throughout an illness. If pain hasn’t been present, it’s unlikely to develop near end-of-life. If pain has been present but manageable, it will likely continue to be manageable rather than escalate out of control as death nears.
One study of patients with advanced cancer showed their pain prevalence actually decreased from 52% about six weeks before death to 30% in the last week of life. Perhaps this occurs because the dying process is one of shutting down, not escalation. Patients’ energy and alertness decreases and they tend to rest and sleep more.
An individual’s unique circumstances may bring increasing pain in the last weeks of life, however this is unusual. In such situations, it is imperative that the health care team aggressively pursues comfort with all of the urgency and expertise possible.
Difficult choices as death nears
As the changes described in this article progress in the final days or hours of a terminal illness, difficult choices may arise, such as whether to provide food and fluids, receive blood transfusions, or treat infections. Ideally, the person who is ill makes these choices. When this isn’t possible, a family member or person chosen as substitute decision-maker may be asked. It can be difficult to decide tests or treatments for someone else, but usually there is some sense of what the person would say if they could. Ask: “What would the person want if he/she were able to tell us?” rather than “What do we want done for him/her?” In this way, the decision-maker serves as messenger for the patient’s known values and beliefs, rather than assuming responsibility for care decisions.
It may feel to families as though these decisions could make a difference between life and death, but it’s important to remember that the underlying illness is not survivable; no decision can change that. These choices about health care options won’t determine whether the person will live or die, but how their final days are experienced. The illness itself brings the onset of death, and health care decisions are focused on choosing the path that’s most comfortable for the person who is dying, and that reflects the person’s values.
When loved ones are unable to be there
When family members can’t be present as death nears, they may feel guilty. It may help to remind them that their connection is meaningful through thought and spirit, and not physical proximity… Whether they are just outside the room, in a different city or country, the physical distance between them does not diminish the closeness they feel.
Sometimes it seems as if a person waited for a specific time to die, like the arrival of a loved one, or when no one was at the bedside. Families who diligently held vigil may be upset if the death occurs when they briefly left. While we can’t know whether people can actually wait for a moment of privacy and solitude to die, this possible explanation may provide some comfort to those who briefly left the bedside at the time of death.
Sometimes family members arrive just a few minutes after death occurs – they may have been called to come because changes were happening quickly and couldn’t arrive in time. It is reasonable in such situations to sit at the bedside, perhaps holding the hand of the person who died, and say whatever feels right.