Like most situations that physicians encounter in their work, end-of-life conversations are not easy and require preparation and training. Yet these patient discussions are among the most satisfying I’ve experienced in my career because they’ve made me feel that I’ve made a true difference, offering comfort and a certain level of control to patients and families who are enduring difficult decisions.
Throughout my years as a practicing internist, I’ve had dozens of conversations that have eased patients’ fears as they approach the ends of their lives, convincing me that the medical profession – and physicians, in particular – must prioritize and embrace our role in guiding patients through end-of-life decisions.
Unfortunately, as a profession, we have often come up short in this important area. For example, a physician survey from the John A. Hartford Foundation revealed that only about 14 percent had ever billed Medicare for end-of-life conversations, and more than half had never discussed end-of-life care with their own physicians.
More recently, the COVID-19 pandemic has made clear our health system’s shortcomings in terms of end-of-life care, while many Americans were dying in nursing homes or hospitals without loved ones at their sides. Undoubtedly, this is not the way many patients would have chosen to go had they been prepared. It’s been repeatedly confirmed by surveys that most Americans prefer to die at home – 71 percent according to a 2016 Kaiser Family Foundation survey, contrasted with just 9 percent in the hospital.
Admittedly, it is understandable that physicians who lack training in end-of-life planning are uncomfortable engaging in these often-difficult but necessary conversations. Unfortunately, the consequence is that end-of-life planning becomes akin to a game of “hot potato,” with no one doctor taking the responsibility to begin the process with the patient and family. Too often, the conversation gets pushed aside and delayed until the patient has already experienced a health crisis, at which time it may be too late to engage in deliberate, detailed planning. By then, a patient may have received treatment they would not have wanted or died in a manner and place they would not have preferred.
As physicians, we have the power to change this with a little training and preparation. We can learn how to engage patients in productive and helpful end-of-life conversations the same way we have mastered taking patient histories and performing physical examinations. Here are some ideas on how to start.
Resources are available. Physicians can begin educating themselves by taking advantage of a wealth of online information regarding end-of-of-life planning, including training modules, checklists, and support documents. Start by familiarizing yourself with your state’s paperwork and legal forms, such as Do Not Resuscitate orders, then initiate conversations with patients by asking whether they are aware of their end-of-life options. National organizations that offer resources include Respecting Choices, the Center to Advance Palliative Care, and the American Academy of Hospice and Palliative Medicine.
It is an ongoing conversation. It’s important to view end-of-life conversations as ongoing discussions rather than one-time events, which helps to demystify the process and make it more manageable for patients and their families. Including end-of-life planning in routine wellness visits encourages patients to view the conversation as a status check and gradually deal with the process rather than feeling pressured into quick decisions during a health crisis. Begin by asking patients how they feel and whether anything has changed, then move the conversation into the territory of legal documents and end-of-life options.
Bill when appropriate. End-of-life conversations are often difficult for physicians, as well as patients. That’s why physicians shouldn’t hesitate to bill for this important work when appropriate. In light of the recent pandemic-fueled surge in telehealth’s popularity, virtual visits are an excellent option for end-of-life discussions, enabling patients to remain in the comfort of their own home to reduce anxiety.
It takes a village. Most physicians are not experts at palliative care, and no one expects them to be. Physicians should not feel pressure to handle the entire end-of-life planning process on their own. Partner with support staff, social workers, nurses, care coordinators – and most importantly, the patient’s family members – to develop a wide support system. Physicians should ensure that their organizations, at a minimum, have established the appropriate contacts with local hospice and palliative care providers for referrals.
For physicians who lack experience in end-of-life counseling, the process can be daunting at the beginning. However, they can be confident that once they have obtained the proper training, preparation, and experience, these conversations will be among the most fulfilling of their careers. By regarding end-of-life planning as a shared responsibility, physicians can become more well-rounded professionally and help patients conquer their most profound fears.
It’s time to start the conversation.
Caroline DeFilippo is an internal medicine physician.
Image credit: Shutterstock.com