Caring for someone at the end of life is not always easy. As the illness progresses, you may be responsible for making sure that their most basic needs and physical comfort are met. Understanding the stages of the dying process may help you with what to expect and help to reduce the amount of stress you feel as a caregiver.
Here are three common patterns or dying trajectories associated with the stages of dying:
1. Short period of decline
People dying from cancer often experience a short period of decline.
Individuals may be strong for a long period, even for years after their cancer diagnosis and the person may have had multiple treatments for their illness.
Although you may notice a slight decline in the ability to function when the illness recurs (and during the treatment), near death, the individual may experience a significant and steady decline in the ability to function and in their strength. They may also be confined to the bed in the last weeks leading up to death. There is often time for the family to provide care to the dying individual and prepare for the death.
Sample Case Study - Here is an example of an individual who is in the short period of decline pattern:
John was a 75-year-old business owner diagnosed with brain cancer three months ago. In the beginning his family supported him with his personal care while the visiting nurses managed his medical care. John took the time to travel, transfer his business to his son, and spend time with family and friends. Over the next two months his functioning and strength declined and he was confused at times. As his care needs increased the nurses increased their time in the home and personal support workers (PSWs) were added to the team to provide John’s personal care and respite support for the family. The nurses and PSWs continued to provide care, which included helping the client and family understand what to expect as John’s condition changed. John and his family chose to have a home death and three months after his diagnosis John died with his family at his side and supported by members of the health care team.
2. Long-term limitations with intermittent serious episodes
People experiencing long-term limitations with intermittent serious episodes tend to alternate between periods of decline and periods of recovery.
At periods of decline the person may require medical treatment, hospitalization or an adjustment in medication to help stabilize them.
At periods of recovery, the person may recover some of their previous level of functioning and may again enjoy activities they used to do. They may be stable for weeks or months, and decline again when their chronic illness changes or they experience another health issue. Eventually the repeated declines will lead to death. It’s like a roller coaster, which makes it difficult to estimate the time remaining until death for people in this pattern of dying.
Sample Case Study - Here is an example of a person and spouse living through intermittent serious episodes in this declining pattern of dying:
Joyce was the wife of Robert who had Chronic Obstructive Pulmonary Disease (COPD) for the last 10 years. For the last five years he required repeated hospital admissions, experienced decreased functional abilities and increased needs. The family has gathered to say goodbye four times. Joyce is the primary caregiver and is exhausted some days – wondering if her husband will die soon, hoping he will, hoping he won’t, all the while feeling guilty that she thinks this. Nurses and PSWs come to the home daily to care for Robert and his wife. Robert has become more confused and is having more difficulty breathing – this time it does not improve. The family decides to celebrate Robert’s birthday a month early. One week later Robert dies at home with his family.
3. Slow decline pattern of dying
The slow decline pattern of dying can happen over years. There may be periods of decline and then improvement but the overall decline is gradual and progresses slowly. When the person has a good day the family may wonder if they are getting better, and when the person is having a bad day, they wonder if death is near.
There are many, many losses experienced by the person dying, and by their family and caregivers. The person dying gradually loses basic level functions such as doing their own personal care, walking, or eating. Caregivers may struggle to be the caregiver over many years and may experience fatigue and depression. Often people with dementia die in long-term care facilities.
Sample Case Study - Here is an example of a person living through a slow declining pattern of dying:
Alice is an 87-year-old widowed woman who has repeated health-related issues in addition to being diagnosed with dementia. She is cared for in her home by personal care workers and with the support of family/friends. She is admitted to hospital after getting food poisoning, as she did not remember to discard spoiled food. Alice is later discharged to long-term care. Over the years Alice went from being independent with her eating and personal care to being cued, and later being totally dependent on the personal support workers in the long-term care facility. Some days Alice recognizes her family while other days she does not know her family. Her daughter feels like her mom died years ago despite her body still being alive today. The family feels guilty for moving her to long-term care and giving the caregiving role to someone else, but they are relieved that she is receiving the care she needs.
See also our Elizz article on End of Life Emotions Caregivers Can Expect.
Reference: Journal of the American Medical Association, 2001, Vol 285, Issue 7, 925-932 as cited in the RNAO End of Life During the Last Days and Hours Clinical Best Practice Guideline