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.
Please remember that when an expected death is thought to be within hours or days, the focus of care is usually on maintaining the person’s comfort rather than pursuing tests and treatments. Also at this time, families may want to consider whether there are important cultural, spiritual or religious rituals that need to take place just prior to death or at the time of death. If so, it is helpful to inform those who will be participating and link with the health care team as required.
Some General Considerations
As a life-limiting illness progresses, some common concerns and considerations can arise. These include concerns about pain at end of life, difficult choices about care options, and the dilemma faced by loved ones who cannot be there.
A Common Concern: Will Pain Worsen As Death Nears?
Pain is one of the more common symptoms experienced by those living with serious illness. Understandably, it is common to be concerned that pain will steadily worsen and be poorly controlled as death nears. People 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?”
What we see on television and in the movies has contributed to this perception. The reality is quite different, however.
While it is true that pain is a common symptom in advanced illness and merits the full attention and expertise of health care providers, it tends to behave consistently for a person throughout an illness. If pain difficulties have not been present, they are unlikely to develop near end-of-life. If pain has been present but manageable, it will most likely continue to be manageable rather than escalate out of control in the final days.
One study of patients with advanced cancer showed that in fact the prevalence of pain actually decreased from 52% about 6 weeks before death to 30% in the last week of life (Conill et al 1997). Perhaps this decrease in pain is because the dying process is one of shutting down, not escalation. Our energy decreases, our alertness decreases and we tend to rest and sleep more.
Of course, sometimes an individual’s unique circumstances may result in increasing pain in the last weeks of life, however this would be unusual. In such situations, it is imperative that the health care team aggressively pursue comfort with all of the urgency and expertise possible.
See also: Pain
Difficult choices as death nears
As the changes described in this article develop in the final days or hours of a progressive terminal illness, difficult choices may arise. There may be questions about whether to provide food and fluids, receive blood transfusions, or treat infections. Ideally, the person who is ill makes the choices about treatments. When this is not possible, a family member or person chosen as substitute decision maker may be asked these choices. It can be very difficult to decide on tests or treatments for someone else, but usually there is some sense of what the person would say if they could. Consider asking “What would the person want done if he/she were able to tell us?” rather than “What do we want done for him/her?” This way the decision maker serves as the messenger for the patient’s known values and beliefs, rather taking on the responsibility for care decisions.
It may feel to families as though these decisions could make the difference between life and death. Yet, it is important to remember that the underlying illness itself is not survivable - no decision can change that. These choices about health care options will not determine whether the person will live or die, but rather how the final days are experienced. The illness itself is bringing the approach of death, and health care decisions are focused on choosing the path that is most comfortable for the person who is dying, and that reflects the person's values.
See also: Health Care Decisions
When loved ones are unable to be there
Sometimes family members cannot be present as death nears, and they may feel guilty about this. 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 a different country, the physical distance between them does not diminish the closeness that they feel.
It sometimes seems as if a person waited for a specific time to die. It may have been the arrival of a loved one, or the opposite… a time when no one was at the bedside. Families who diligently held vigil may be upset that the death occurred when they briefly stepped away. Although we cannot truly know whether people can wait for a moment of privacy and solitude to die, such a possible explanation may provide some comfort to those who were briefly away from 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 in because changes were happening quickly and were not able to arrive in time. It is reasonable in such situations to sit down at the bedside, perhaps holding the hand of the person who died, and say whatever feels right.