The concept of dying trajectories, or patterns of death, was first suggested in 1965 by Barney Glaser and Anselm Strauss. Although each death is unique, these two researchers found patterns of dying associated with different types of illnesses. These patterns have helped physicians and end-of-life health-care teams have a better understanding of what is likely to happen and when to provide support as well as palliative and spiritual care for the dying and their loved ones.
When the health-care team as well as patients and families have a better understanding of what is likely to occur and how quickly the decline will take place, they are better able to cope with the unknown. They are also better prepared to accept and deal with the physical and financial burdens as well as the emotional roller coaster associated with the dying process. There are four basic trajectories of dying.
The trajectory for sudden death from accidents, violence, and sudden severe illness such as a heart attack or stroke is characterized by a rapid downward slant. The patient as well as the family is not prepared for death, and there has usually been no time for goodbyes. There may be many regrets and a lot of guilt associated with this sudden, unexpected loss. Bereavement needs are intense and often health-care systems are caught off-guard and ill-prepared to support those in need. With no need for prolonged connection with the health-care team, these families are left to find their own support and assistance through the grieving and healing process.
The cancer death trajectory is probably the most predictable and familiar. In fact, the study of dying trajectories began by looking at cancer deaths. Their dying trajectory is a series of descending plateaus. However, once the treatment phase is no longer effective and the cancer becomes advanced, there is usually a steady decline, which may take weeks to months to progress toward death. As death approaches, the decline becomes rapid.
This rapid decline sometimes comes as a surprise, but when recognized and used effectively, it gives patients and families time to say their goodbyes and get things in order. In fact, once patients take to their beds, this process usually takes a matter of weeks.
This trajectory is a series of peaks and valleys that can even give the impression of near recovery due to alternating phases of remission and relapse. This continues until the pattern becomes more of an alternation between acute illness and brief relapses, but a chronic decline in overall health status.
This is commonly seen in patients with CHF (congestive heart failure), COPD (chronic obstructive pulmonary disease) including emphysema, and those living with the long-term effects of stroke or other chronically debilitating diseases. They bounce in and out of hospitals or nursing homes and may be on and off antibiotics or other periodic treatments. They have a crisis and then go into remission.
There is always the hope that one more round of treatment may do the trick, and yet one more round could be the beginning of the end. This is an uncertain trajectory, and unless or until the patient and family has had enough and takes measure to stop aggressive forms of treatment, the pattern is likely to continue for a year or two.
In fact, physicians are often reluctant to acknowledge this as being a trajectory of dying. However, if they were asked whether they would be surprised if this patient died sometime in the next two years, they would probably say no.
When your parent or in-law has dealt with a long-term chronic illness, it may be necessary to question the physician about whether she would be surprised if your parent died in the next year or two. If the answer is no, then some serious consideration of hospice care or other end-of-life care decisions should be undertaken at this point.
The Long Steady Decline
For patients who have had major health issues such as massive strokes, multiple or massive heart attacks or other catastrophic events, life threatening infection, or a surgical event that went terribly wrong, a long, steady decline in health status is the fourth dying trajectory. Despite acute, intense care including many life-prolonging efforts, there is no improvement. Everything possible has been done, and still no positive response is elicited.
At some point, either the patient dies despite all of the best efforts or decisions need to be made whether or not to continue these efforts. How many tubes do you insert? How long do you rely on a ventilator to breathe? When do you discontinue life-support measures?