End-of-Life Discussion: An Integral Component of Patient Care
Next year, Medicare plans to begin reimbursing doctors for end-of-life discussions. This development highlights the vital role doctors play in these discussions and the importance of determining patients’ wishes before illness prevents them from speaking for themselves.
This change in billing is important not because of the money itself, but because it puts end-of-life discussions on the list of things to do. By doing so, it reminds doctors of their duty regarding these issues, rather than passing the responsibility along to another provider. The inherently sensitive nature of these conversations can make them difficult to discuss, but they are an important part of patient education and care. If not brought up when the patient is healthy, they may arise only after a patient is too sick to communicate.
Patients nearing end-of-life situations can also gain valuable insights from their doctors’ experiences. In a 2003 publication of results from the Johns Hopkins Precursors Study, researchers reported that in the instance of irreversible brain disease without terminal illness, the majority of physicians would personally not want interventions, such as CPR, intubation or feeding tubes. They would want only pain control.1 In this case, physicians have the advantage of seeing what is involved with these types of procedures beforehand; typically, patients do not. Furthermore, physicians know what decisions other patients and families have made in similar circumstances. Knowing these details lets patients to make more informed decisions.
However, it still remains incumbent upon the physician to ensure the patient is making his or her own choice. Patients may choose CPR, intubation and feeding tubes, but they may also choose to be made comfortable and not resuscitated when the terminal event comes. It is not the decision itself, but rather the patient autonomy that led to this decision that makes these types of discussions so important.
All too often, patients present to the hospital unaware of the severity of their diseases. This is exactly what Mark Duncan, chief of surgical oncology at Johns Hopkins Bayview Medical Center, aims to prevent. He is determined to give his patients hope but also prepare them for all outcomes, and if a patient has a low chance of survival, he makes sure patients understand this so they may plan for how best to live their lives until the end. Duncan believes it is his responsibility to speak with patients about these sensitive topics. “No one should be surprised to find out he or she is dying,” he says. “I will never walk out of a patient room and tell you [the medical student] something I will not also tell the patient.”
There remains a balance of sensitivity and frankness in these conversations. Duncan seeks to acknowledge the reality of a patient’s circumstances, but he also wants to encourage his patients. There is hope in these conversations, an important facet of personalized medicine.
Dr. Duncan also indicated the significance of the upcoming change in Medicare billing. He believes this development “demonstrates the value” of end-of-life discussions. Furthermore, he states, “This is not a medical oncology issue. This is a human life issue.”
The timing of these discussions is important, since they are most effective before the patient becomes acutely ill. Early discussions allow time for the patient to make an informed decision about his or her future. “So often, these discussions come later than anyone wanted. You want to have them when there is still time.”
Regardless of how difficult they can be, Dr. Duncan encourages physicians to persevere. “End-of-life discussions are not comfortable, and many physicians do not want to do these because they are difficult … but these are among the most important conversations we have.” Not only have patients thanked him, families have thanked him, too. While it may not be easy to have these conversations, there is strength in the honesty of them, and they empower patients and families to make truly informed decisions.