For most care providers, having conversations about end of life comes with certain challenges. Most medical education prioritizes diagnosis and treatment of illness with the goal of extending life; therefore, it can be quite difficult to acknowledge when curing illness or prolonging life are no longer achievable goals. On top of that, it’s certainly not easy to witness the pain and sadness of families when their loved ones are nearing end of life.
My work with dying patients and their families has shown me that having these difficult conversations can help provide patients with the best quality of life during the time that they have left. As hospice medical director and a physician with hospice and palliative care certification, I’ve seen firsthand that terminal illness is a family experience. So while physicians are working to care for patients, we’re also faced with navigating communication needs for families that are going through this experience alongside their loved one.
In fact, physicians are in a unique position to facilitate conversations that might be especially difficult for families to undertake on their own. I’d encourage my colleagues to think about how they might play a role in making conversations about end of life less taboo and create an open dialogue that will help them best meet their patients’ needs.
Physicians can take a few simple steps to make these conversations easier:
1. Find an appropriate space and time that will allow for minimal interruptions. It’s important when conveying information to be as clear and direct as possible, so that your patient and their family aren’t left wondering how to interpret what you’ve said. Don’t forget to take the time to let that information be absorbed.
2. Understand the communication preferences and needs for both patients and families, which are equally meaningful during this process. It is important to ask our patients about what they would like to know and how they prefer information to be delivered; this includes which important people they would like to be present for support. For some patients, this might include the need to explore medical information and meaning, disclose feelings, and maintain a sense of self-control and hope. Keep in mind that “hope” means different things at different stages of their illness. When your patient is first diagnosed, they may hope for a cure, but as time goes on and treatment options are no longer effective, that same patient may hope to remain comfortable at home through end of life.
During this process, families may experience a need for information, a need for permission to speak, and a need to be heard. This may sound simple, but something this basic can help ensure that common feelings of anxiety and sadness are validated.
3. Start the conversation by determining what your patient and their family already know to help guide the discussion. This might mean asking what they know about their diagnosis or about hospice care in general, or even something as simple as “What’s been going on lately?” to get a sense of where they’re at.
Once your patient has an understanding of their diagnosis, work with them to figure out what their goals are and how hospice can help meet them. Ask about their priorities if time is limited, what matters to them in the end, and what they’re willing (or not willing) to sacrifice. Many patients share similar end-of-life goals, including spending their time at home, not returning to the hospital, maintaining independence, and minimizing symptoms.
4. Don’t forget to ask your patient what they need or expect from you. Some may want to talk, while others may just need someone to sit quietly with and hold their hand. Don’t make promises you may not be able to keep. Be supportive but also realistic when discussing what this diagnosis means for your patient and what comes next.
This process isn’t easy. It takes an emotional toll and can be difficult to witness the pain and sadness of families after delivering bad news. Keep in mind, however, that the earlier these end-of-life conversations are initiated, the more beneficial it will be for your patient.
92 percent of people say they’re ready and willing to have these conversations, yet only 32 percent of people do. Physicians can play a vital role in initiating these conversations and ensuring that more people are able to meet their end-of-life goals.
Fernando Moreno is a hospice medical director and palliative care physician.
Image credit: Shutterstock.com
