End Of Life Conversations
Our Patients Are Ready, Are You?
The SarsCoV2 pandemic may have forever shifted the way we work, where we live, and how we think about our bigger-picture values and priorities. As we’ve grappled with the reality of losing more than 600,000 lives in the U.S. alone, it’s also forced a collective reckoning with our own mortality.
According to a 2020 nationwide study commissioned by VITAS Healthcare, more Americans, particularly young Americans, are thinking about their wishes and values when it comes to end-of-life care. That shift makes sense. One in five people surveyed reported having someone close to them who became seriously ill or died since the pandemic started and did not know what their loved one’s end-of-life wishes were. Additionally, while the majority of respondents (69%) acknowledged that talking about end-of-life planning is important to them, only slightly more than half (56%) had actually discussed their end-of-life wishes with others. Though more than a quarter (29%) said the pandemic had increased their likelihood to write down their end-of-life wishes, this didn’t necessarily translate into action.
What’s more is that nearly a quarter of people surveyed (22%) said they expected their healthcare professional to initiate the dialogue. In other words, our patients are increasingly open to having these difficult, yet essential, conversations.
They’re waiting for us to break the ice.
Starting the Conversation
We know that many patients avoid conversations about death and dying. Frankly, they’re not the only ones.
According to a 2018 study published in the Journal of American Geriatrics Society, 99% of physicians agree that end-of-life conversations are important, but most of us (71%) report we don’t have the formal training to adequately equip us for this crucial moment in a patient’s care journey.
Fortunately, keeping a few strategies in mind will help both you and your patient approach this important conversation with trust and relative ease.
Offer compassionate curiosity.
Open-ended conversation starters are a great way to naturally steer toward end-of-life planning. Consider opening with, “How has your health changed over the last year?,” “What matters most when you think about your health and what you want out of your care?,” or “What does a good day look like for you?”
These conversations also offer great opportunities to learn about a patient’s cultural identity, including their religious beliefs, traditions and rites surrounding death. A simple question reveals so much: “What does comfort mean to you or your loved one?”
Ask patients what they would like to know and invite their permission to share more – “How much information about the progression of your disease would you like to hear?” Also appreciate the value of strategic silence so the patient can process the conversation content and corresponding emotions.
These dialogues might also provide insight into a patient’s home life and their family’s values. For example, in most Asian cultures, adult children often feel obligated to keep their aging parent at home and provide all the care they need. This is a chance to explain how comfort-focused hospice or palliative care can support their caregiving relationship, especially as a patient’s symptom management needs intensify.
The key is to have these conversations early, non-judgmentally and regularly over the course of the patient’s illness to help everyone – the patient, their loved ones, and even you – feel more comfortable with and confident about the subject at hand. When we speak about things routinely, they begin to feel more routine.
Lean into listening.
We all tend to have preconceptions and biases about a patient’s ethnicity, age, national origin, gender, sexual orientation, or religion. Of course, no healthcare professional wants to feel ignorant, incapable, or imposing—especially during such a difficult period in a person’s life. Limit your assumptions about how these factors affect a person’s preferences for care. Instead, use your existing knowledge to ask better questions.
Then incorporate the answers into your care of the patient and their family, demonstrating that their needs and preferences are heard.
Here, it’s important to practice reflective listening. Confirm you really hear what they’re telling you by repeating back their words: “I hear you saying that what’s most important to you is…” Show them you’re picking up on non-verbal cues that may signal their emotional reaction to the conversation, too – “I can see you’re distressed about this. Do you need a moment before we talk a bit more about what this means?”
Bear in mind that the needs of the patient and the needs of the family may differ, requiring increased sensitivity when discussing care options. Recap the discussion before aligning on any next steps.
Do your homework.
Once you better understand who your patient is and have identified their care preferences, do some additional research. Consider how their generational status may intersect with their national origin or ethnic community. If a patient grew up overseas, explore the regional politics and major events of the time to understand their perspective more fully.
For instance, those who grew up in Vietnam may still be thinking about end-of-life in the context of Communism. Because they didn’t have hospice care, they may be unfamiliar or even distrustful of the concept and explaining it in a way that’s clear – and giving them the oportunity to ask questions – can help demystify or destigmatize end-of-life care.
Again, avoid making assumptions, no matter how well-informed or well-intentioned you are. With a little research, it’s easier to anticipate and address issues before they arise. Plus, your knowledge can help a patient feel confident in what they might otherwise see as a risky decision to elect hospice care.
Seek support when you need it.
If you’re facing a language barrier, it’s best to enlist the support of a translator service to make sure your message is getting across clearly, accurately, and with appropriate cultural sensitivity. If a patient seems hesitant to discuss certain needs with you, consider inviting another member of your team to be present during a visit. In some cases, patients may be more willing to open up to someone who feels familiar to them. You might even reach out to a local medical association or cultural organization for guidance.
It’s okay to ask for help if you feel overwhelmed – or even just uncertain.
Your Next Move
Every patient is different, and there is no one-size-fits-all approach to end-of-life care. However, these strategies will help ensure you have a meaningful and productive dialogue. When that happens, your patient feels they are an active and informed participant throughout the planning process. Giving patients a voice – and demonstrating that we hear them – is vital as we support them on their care journey while they are healthy, and ultimately when the time comes to refer them to hospice or palliative care settings.