End-of-life conversations include some of the most valuable advice physicians can deliver to patients, yet many physicians still lack comfort and experience with these interactions.
In my own experience as a practicing internist, I have found end-of-life conversations with patients to be one of the most satisfying aspects of my career because they make me feel I’m making a difference in a person’s life. These experiences have also convinced me that, across our profession, we must prioritize and improve our ability to communicate with patients about end-of-life issues, especially as the so-called “gray tsunami” of aging Americans continues to affect the U.S. healthcare system.
The COVID-19 pandemic has brought our collective failure around end-of-life care into sharper focus, as thousands of Americans died in nursing homes or hospitals, unable to spend their last days in the company of loved ones. While some of those who died in hospitals and nursing homes likely were following their end-of-life wishes, it’s a virtual certainty that many more were not. Surveys repeatedly show that the vast majority of Americans prefer to die at home – 71% according to a 2016 Kaiser Family Foundation survey and just 9% in the hospital. Unfortunately, many of those who died from COVID-19 in hospitals might have had the chance to die at home if they had engaged in end-of-life planning with their doctors prior to the pandemic.
Whether due to a lack of training, or cultural and spiritual beliefs, many physicians simply are not comfortable discussing end-of-life planning with patients, resulting in something I liken to a giant game of “hot potato.” Because no one steps up to take responsibility and initiate the process with the patient, the conversation often gets pushed aside and left for someone else until the patient has undergone a medical crisis, which may be too late. By then, a patient may have received treatment they may not have wanted and/or died in a manner and place they would not have chosen.
It doesn’t need to be this way. With a little training and preparation, physicians can develop the skills to conduct end-of-life conversations in the same way they learn to take patient histories or perform a physical examination. Here’s some recommendations for how to get started.
To begin educating themselves on end-of-life planning, physicians need little more than access to a web browser. A surplus of materials from training modules, checklists and support documents are available online to help doctors develop familiarity with basic processes and concepts. Respecting Choices, The Center to Advance Palliative Care and The American Academy of Hospice and Palliative Medicine are just a few of the many national organizations that offer training and resources. A physician should start familiarizing herself or himself with their state’s paperwork and legal forms, such as Do Not Resuscitate orders, and begin asking patients whether they are aware of their end-of-life options.
To demystify the process and make it seem more manageable to patients, it’s important to view end-of-life conversations not as one-time events but as a series of ongoing discussions. The more comfortable physicians are with these conversations, the more patients will feel at ease. The best approach is to include end-of-life conversations in usual wellness visits, which will encourage patients to view the discussion as a status check. Ask them how they’re feeling and if anything has changed, then move the conversation into the territory of legal documents and end-of-life options. Treating end-of-life discussions as ongoing events enable physicians to devote more time to these conversations; it is also emotionally easier on patients because they are allowed to deal with the process gradually without feeling forced to make quick decisions during a medical crisis.
Don’t undersell yourself or the services you provide. End-of-life discussions are heavy, emotional conversations that require time and care. Familiarize yourself with the relevant billing codes and use them when appropriate. For patients who are homebound or lack reliable transportation, telehealth is a great option for end-of-life discussions. Rather than hosting patients in a sterile, unfamiliar office environment where they may feel vulnerable, let them remain in the comfort of their own homes sitting next to a loved one in their favorite chair with their favorite blanket to ease anxiety around difficult conversations.
Physicians generally feel that we need to know all the background, history and details of a patient’s illness to provide proper counsel and avoid mistakes. For end-of-life planning, though, doctors should adjust their mentality. In more dire situations, we don’t need to know all the background details – we just need to ask patients how they feel and what’s important to them. Let patients know that you’re worried, and because their condition may worsen or time may be limited, the end-of-life discussion needs to happen as soon as they are ready.
No one expects all physicians to become palliative care experts and attempt to organize the entire end-of-life-planning process by themselves. Take a collaborative, comprehensive approach and partner with support staff, social workers, nurses, care coordinators and others. At a minimum, it’s important to have contacts with local hospice and palliative care providers to know where to refer patients. A wider support system exists; it’s just up to physicians to tap into it.
It is important to acknowledge that end-of-life conversations aren’t much easier for physicians than patients, and that feelings of discomfort are acceptable and to-be-expected, especially in the beginning. Nonetheless, physicians should view end-of-life planning as a shared responsibility, regardless of individual specialties or areas of practice. Doing so will make us better doctors and help our patients overcome some of their deepest fears. Our job is to simply start the conversation.