Karl Lorenz is a professor of medicine at Stanford University where he serves as section chief of palliative care programs.
Sometimes, it doesn’t take much to communicate well. One of my earliest experiences as a palliative care doctor was at the bedside of a man with advanced cancer who was having trouble eating and keeping up his weight. A feeding tube was planned for the next day, but it wasn’t going to help. Although no one had voiced it, we knew the cancer was getting worse. A gentle acknowledgement of that fact allowed us to recognize that death was near, and a moment of shared grieving gave us time to rethink the “more is better” refrain we’re so used to. He decided to forgo the tube for a chance to go home, where he died some weeks later.
Although language is one of our most fundamental faculties, we can’t be sure of clear communication when we are ill: What do we have? What’s likely to come next? What are our options? How much time is left? As it turns out, research shows that we often conspire with our doctors to suppress emotionally troubling conversations. Recent research suggests that in the best case we might expect to see good, clear communication soon after a metastatic cancer diagnosis less than one-fifth of the time. In general, communication about end-of-life care in the United States seems to have gotten worse, instead of better, in recent years.
We need to be able to “see” communication between patients and providers in order to improve it. We’ve long relied on doctors’ notes in medical records to identify when doctors and patients discuss goals for care, and notes remain helpful because effective communication has to convey information to all kinds of different people — oncologists, nurses, general practitioners, hospitalists, palliative care specialists — over a long period of time. However, the ability to analyze and search text or even use speech analysis to characterize conversations with patients and families could prove newly useful in identifying and making sense of all this information.
We also need to encourage more communication, of higher quality. Medicare recently proposed paying doctors for end-of-life planning, including the lengthy and repeated conversations that sometimes entails. One of the biggest oversights in end-of-life care is the need to ask patients or their families if they have had helpful end-of-life conversations. Health-care systems that do measure this tend to find significant gaps in quality, and the much larger Medicare system shouldn’t let doctors off the hook. Payment might help, but simply creating more advance directives won’t foster better end-of-life care unless we ensure good, high-quality discussions.
While we need professionals who communicate well, there’s plenty of evidence that doctors need not be the only ones for the job. Nurses, social workers and spiritual advisers play critical professional roles, and lay advocates are another consideration. Dr. Manali Patel, an investigator at Stanford University, is testing the idea of using paid or volunteer workers to check in on and advocate for the sick, helping to bridge the community-to-professional gap. Most of what supports us in health or sickness depends on what happens outside the cloistered clinics and hospitals we visit. In all cases, teamwork is key to effectively using our currently thin professional resources.
Similarly, health-care systems need to make sure that the voices of patients and their families are heard. Many health-care systems are emphasizing “patient-reported outcomes” communications from patients about their own health, on their own terms. Just as important is the idea of giving patients and families a direct voice. Why aren’t they included when we deliberate budgets for hospital improvements? Does the C-suite hear the stories that patients and families tell at end of life?
Finally, we must have to be sure that our wishes are respected, no matter what they are. In “Wit,” Margaret Edson’s 1999 Pulitzer Prize-winning play about a poetry professor overcome both by her advancing ovarian cancer and her physicians’ intellectualization of the situation, the audience experiences profound distress when the character’s oncologist ignores her dying wish for comfort. The play serves as a powerful example that those who provide for our health should provide comfort and support when and where we need it.
Some states are creating electronic registries so that our preferences can be accessed anytime, anywhere they are needed, like when we visit an emergency department. Primary-care and specialist clinicians such as oncologists need some basic skills in promoting comfort, and health-care providers should offer palliative care and hospice when patients and families need or request more advanced support.
Almost all of us will eventually become caregivers or patients at the end of life, but we won’t overcome the challenges that ensue unless we acknowledge and forthrightly address the pain and fears that the end of life can bring. Policymakers, insurance payers and the wider public will all reach the same fate, and the journey isn’t always easy. Knowing that we’re all in this together, can we find the will to make honest words at the end of life more routine?
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