End-of-life is not a topic many people find easy to discuss. But we shouldn’t shy away from it. Nor should providers let their clients and families side-step the conversation, either.
For one, it’s actually not only a conversation about death. It’s about how we choose to live and thrive and safely navigate a complex, sometimes even chaotic, healthcare environment. Two, everyone dies eventually. Ensuring that the experience is as peaceful and meaningful as possible is a worthy, often-attainable, goal and care providers are uniquely positioned to help people achieve this. And if patients don’t talk to their caregivers and loved ones about what they want the end of their lives to look like, the outcomes are stark: medical strangers will likely make some of their most important decisions for them.
The new year presents a sometimes-rare opportunity to have this talk, given the common focus on tackling new goals and projects, especially if they seem particularly difficult. There’s also this: Despite the fact that 92% of Americans believe talking about their end-of-life wishes is important, and that more than half would be relieved to have such conversations, a 2018 survey found that only 32% of people had done so. A more recent study discovered that while more than half of respondents knew what kind of medical care they did and did not want at the end of their lives, just 22% said they had documented these desires formally.
But creating an advance care directive, or living will as they are sometimes called, does not have to be difficult or onerous. Nor does the conversation about end-of-life plans have to be sad and depressing, no matter your life circumstances. In fact, everyone over the age of 18 should have a plan. Advance care directives are really a matter of ensuring we all have a say in the care we receive, even if it comes to a point where we can’t physically voice our wishes independently.
A gift
Some experts suggest thinking of the conversation as a gift we can give to the people we love, protecting them and relieving them of the stress and worry that trying to figure out what we might have wanted could cause. Because we all know how difficult, if not impossible, navigating decisions becomes in the midst of an emergency. You might even think of advising your patients to create advance care directives like advising them to buy life alert: both are essential safeguards that insure they have quick access to appropriate services during a crisis. Because, after all, if we can’t speak up for ourselves, who will?
While making end-of-life plans known to those who may be responsible for ensuring they are carried out faithfully is essential, that’s not the only reason advanced care directives are important. As noted, these documents can also be key for patient comfort and safety. Providers need to know what their patients want; no one wants to see another person endure extensive and painful efforts to keep them alive when they would have rather passed on as quickly and painlessly as possible. While data is hard to come by about how many people are over-resuscitated, we do know how much this practice costs: more than $350 billion annually.
So, how can caregivers broach the topic? Here are a few suggestions.
Multiple approaches to the end-of-life discussion
There is no one right way to do this. One helpful resource caregivers can direct their patients to is The Conversation Project’s conversation starter guide. This will help patients talk with their loved ones about their end-of-life wishes. If, as a provider, you want to have the conversation with a patient as well, a simple question like, “Can we talk about your future?” can be a good way to start. You can also begin by describing your own feelings about your end-of-life, what prompted you to think about it in the first place (maybe something you read, a TV show or movie you saw), and then explain that it made you want to know what your patient’s hopes are, too.
When presenting the idea of advance care planning, ask patients to share what will allow them to thrive through their last months or weeks. You might offer to review any plan they create once it’s finished and suggest they share it with their family, too. What’s key is ensuring that their designated medical proxy knows how to access the plan in the event they are unable to themselves.
It’s unlikely everything will be sorted in one chat. This is a discussion that should be ongoing, something caregivers and patients can talk about over coffee one day, during a walk on another. The benefit is, of course, that the more you talk about death and dying, the easier it becomes.
Once people start working through their feelings on the topic, the process of documenting end-of-life plans need not be daunting or scary. It can even be creative and interactive with a video version of an advance care plan. This can be an especially useful way to avoid confusion and misunderstanding and to allow others to access this vital information quickly. Still, without any background in the field, conversations about advance care plans can seem scary, which is why doctors and other providers can be so helpful in guiding their patients through the process.
Talking about death may seem like the last thing you want to do — with those in your care or anyone else. But even if it feels counterintuitive, planning for the end of life is really about planning for life; it’s about living with intention and making the most of the time we all have. Surely the new year is the perfect opportunity for that.
Ferdinando Mirarchi, DO, is the chief executive officer and chief medical officer of USACS MIDEO LLC. He has recently been appointed to the chairman position of the National Palliative Care Committee for USACS.
