Illness Trajectories

Drew Rosielle has a post over on Pallimed blog about illness trajectories, and how they relate to end of life care. The paper that triggered this post is on End-Stage Renal Disease (ESRD) trajectories and published in the latest issue of the Journal of the American Geriatrics Society (JAGS). However, illness trajectories have become a mainstay in the field of palliative care and end of life care generally. This paper in the BMJ provides a useful overview of the concept.

The rise of the recognition and naming of 3 distinct trajectories (rapid steady decline, like in Cancer; slow steady decline, like in Dementia/Frailty; slow steady decline, with precipitous declines, like with organ failure) of the dying process is a basic attribute of the field of geriatrics and palliative medicine. It seems as though these trajectories have arisen as physicians have had to answer the following questions from patients:

• how long do I have left?
• what is going to happen to me? (what will my quality of life be like)
  

They have also arisen because of the availability of improved data, and the ability to describe patient symptoms prior to death.

I am not a provider, so don't face these questions on a daily basis, but I can observe them after the fact (of death) in various data sets using various measures of decline and quality of life. Identifying a pattern and categorizing a person after they are dead is not the same as meeting a living, breathing human being and trying to answer their questions, how long do I have left? and what will happen to me?

Rosielle, who is a provider, has some interesting doubts about the usefulness of these trajectories in actually caring for patients. Rosielle notes that in his clinical practical the trajectories are "useful for explaining, less so for predicting" and that he worries that an over-reliance on the trajectories misses persons who may be very near death but who are not offered the appropriate palliative care services. This means needless suffering may take place.

This is especially true in the Medicare hospice program since patients must un-elect curative treatments in order to begin receiving hospice care. A move to concurrent hospice or expanded palliative care in Medicare could help to alleviate some of these concerns by not forcing clinicians to be so certain that death was imminent, just certain that a patient was in in pain or suffering in a way that could be addressed. A recent study demonstrated that early palliative care improved quality of life and actually extended life in stage four lung cancer. This is only one disease process and the results need to be replicated, but it is a hopeful study that suggests that more needs to be done to make sure palliative care is provided to those who need it.

Worries about moving to concurrent palliative care in Medicare are mostly that it will increase costs and whether the extra cost is worth it. I think these sorts of questions should be asked, but not so selectively. If a new surgical procedure that was 3 times as expensive but only 3% better were identified and was an approved medical procedure, Medicare would cover it no questions asked. Hospice and palliative seem to be the only part of the Medicare program that has to answer these sorts of questions and that makes little sense.

What we need is the best information that we can get that will allow us to try and give patients an evidence based and straightforward answer about the care options they have. Will it extend how long they have left? Will it improve the quality of their lives while they are alive? The models we have to do all this prospectively are not great. There are numerous sources of uncertainty. But, we have to keep trying, and hopefully we can better match the needs of patients with what care options are available.