Discussing end-of-life care isn’t always easy— and, in part, that’s because people tend to view it a bit backwards. We place far too much focus on the first word: end, and not nearly enough on the most important word: life. This shift in perspective may seem small, but it truly can make all the difference when it comes to having a productive and proactive discussion around end-of-life care.
Due, in part, to a lack of easily-accessible resources for patients and their families, there are a host of misconceptions surrounding hospice and end of life care. The tendency to fixate on the word end in end-of-life care is one of them, but that in and of itself can have devastating ramifications. Viewed through the narrow lens of ‘end,’ people may assume that end-of-life care is a point at which nothing meaningful can be done for the patient—when in fact, that couldn’t be further from the truth.
No one wants their loved one to spend their last moments in distress and discomfort— and indeed, hospice and palliative care can help to mitigate any unnecessary suffering for patients and their families. Moreover, early engagement of hospice and palliative care services has been shown to make a remarkable difference in patient outcomes, most notably, when it comes to quality of life. And that is the true heart of the issue.
Patients, in my view, go to hospice not to die— but to live and enjoy their remaining life, while letting the hospice team take care of their medical problems. And although the individual plan of care is tailored to each hospice patient, the overarching goal of that care is always the same: to improve the quality of life for both the patient and their family.
When the focus is on quality of life, it becomes easier to consider all of your options, open up a discussion, and begin to make proactive decisions around end-of-life care. That said, it may still be uncomfortable when the time comes to actually sit down and have the conversation. To help you ease into that discussion, I have a few tips that I’ve adapted from my own work as the Chief of the Palliative & End of Life Care Division of Michigan Health Professionals, and the Director of Inpatient Clinical Operations at Karmanos-McLaren Oakland Cancer Center:
- Choose a Quiet, Comfortable Setting: This is not a conversation to have on the fly. Plan to sit down with your loved one at a time when you know that neither of you will be distracted—and be sure to do so in a quiet and comfortable space that will allow for privacy.
- Ask for Permission Before Opening Up the Discussion: Grant your loved one courtesy and show that you are respectful of their wishes by first asking if it’s okay to discuss the topic. Even something as simple as, “It’s important to me to know how you would like to be cared for if you got really sick. Would you be alright with talking about that?,” can set the stage in a gentle, thoughtful way.
- Demonstrate Empathy with Physical Cues: Give your full attention to your loved one in a compassionate manner. This means being sensitive to their body language, and using physical cues such as direct eye contact. If it’s comfortable for them, you could also hold their hand or offer a hug.
- Listen Actively: There is a huge difference between simply waiting for your turn to speak, and actually listening. It’s important to listen closely and try to truly understand where your loved one is coming from and what they are saying. Let them set the pace. You may have your own thoughts on what the best course of action is— but remember that you initiated the conversation in the first place in order to understand what is best for them.
Author: Dr. Adil Akhtar is associate professor, Department of Medical Oncology & Hematology, Oakland University-William Beaumont School of Medicine; director of Inpatient Clinical Operations at Karmanos-McLaren Oakland Cancer Center in Michigan; and chief of the division of Palliative & End of Life Care for Michigan Health Professionals.