When to Begin the Discussion
Recognizing when it is appropriate to discuss palliative and end-of-life care options with patients and families earlier in the disease trajectory of chronic illness is a high priority for clinicians. Research and expert opinion indicate that earlier discussions can be achieved by reducing the focus on the effectiveness of curative care and prognostic accuracy that delay such discussions until death is the only likely outcome of chronic illness. Many palliative care researchers use the question, “Would you be surprised if this patient died in the next year?” as a way of identifying patients who are candidates for a palliative care discussion earlier in the trajectory of illness.
When is it appropriate for physicians and other health care professionals to have conversations acknowledging that people are entering the end stage of their lives? Another way of phrasing this question is, “When do you believe that your patient is at the end of her/his life?” When researchers have asked this question of physicians, nurses and social workers the typical answer focuses on prognosis. Certainly a patient is at the end of his/her life when she/he has a serious illness and all known treatments are likely to be ineffective. The problem with using prognosis in defining end of life is that we aren’t very good at it (Fox, et al, 1999). Using prognosis as the guide will lead to end-of-life discussions occurring in the last days or weeks of life when death is the only possible outcome. Conversely, discussing the possibility of end of life when the risk of dying is very small is equally problematic. Focusing on the possibility of dying with an otherwise healthy 75-year-old who is contemplating a hip replacement may prevent that person from having a valuable surgical procedure.
Despite our limited prognostic ability clinicians acknowledge that they do know when death is a likely outcome, though it may not be the only outcome. The typical question innovative palliative care programs and end-of-life researchers use with clinicians to identify end-of-life patients is, “Do you have any patients in your practice that, if they died in the next year, you wouldn’t be surprised (Farber, et al, 2003)?” By removing the need to be certain the ill person will die, you open up the opportunity of having more than one outcome. They may well die or they may outlive you, but the understanding that they have a significant chance of dying makes the conversation a possibility.
Those experienced in geriatric care have evolved another definition of the end of life. The end of life is that period in the life cycle where the person with chronic illness can expect a future of loss and diminishment on the physical and/or cognitive level. Depending on the disease process and individual experiences, the end-of-life period can be brief or prolonged. An otherwise healthy woman who dies of a massive heart attack may have an end-of-life experience that lasts no more than 3 minutes. On the other hand a man who develops Alzheimer’s dementia is likely to have an end-of-life experience lasting many years. As the dementia progresses each time he has a major life threatening complication it could be the end of his life or not. This depends on the decisions his family and health care team makes on his behalf. A bout of pneumonia, a fall causing a fractured hip, or the loss of the ability to swallow food can either be seen as opportunities for a natural end to a life well lived, or for medical interventions to sustain life until the next serious illness occurs.
We propose that end-of-life discussions and the transition from curative to palliative care should be considered whenever health team members believe that death is one of many significant possible outcomes in the foreseeable future (Would you be surprised if this person died in the next year?) or in the context of advanced chronic disease there is a serious medical condition that threatens a person’s life.
In the didactic, you were introduced to two ways of “recognizing” when it was the physician’s professional responsibility to explore with the patient and family what would be respectful care if her/his medical condition worsened. The first of these methods is the surprise question: Would you be surprised if this patient died in the next 6-12 months? The following six exercises are meant to reinforce your learning in using the surprise question. After reading each vignette, please answer the following:
- Answer the surprise question if you can and provide reasoning that supports your answer
If you can’t answer the surprise question, explain why not and what information you would need to be able to answer the question
Briefly describe the benefits and/or risks of conducting a “Palliative Care Discussion” at this time