Using the D Word: Discussing Death and End of Life Care With Patients
No matter what your profession is, death is a difficult subject to broach. As a medical professional, discussing death and palliative care with a patient or their family can go one of two ways — either they’re very grateful for your straightforward attitude, or they become angry with you for destroying their hope for recovery. Either way, these conversations are inevitable, so it falls to us as medical professionals to learn the best way to begin these conversations so our patients or their family members are prepared for every eventuality. How can we most effectively discuss end of life care with our patients or their families?
First, Don’t Rush
For patients and their families, this will often not be an easy conversation, but it is an essential one. Most patients or family members won’t start the conversation themselves, expecting their doctor to be the one to broach the topic. Set aside some time to have the initial conversation where you will have no distractions — that includes pagers and cellphones. If you are on call, let someone know where you will be and shut off your electronics. Make your patient the center of your attention for this conversation. Take as much time as you and they need. Expect a variety of reactions ranging from tears to anger and everything in between. Be sympathetic and empathetic to these reactions — even if death is inevitable for all of us, no one actually likes talking about it.
Privacy Is Essential
Don’t expect to have an end of life care conversation in a busy waiting room or hospital lobby. Use your office, borrow someone else’s or close the door to the patient’s room, but make an effort to ensure the conversation is a private one. This conversation doesn’t belong to anyone but you, your patient and if applicable, your patient’s family members. If your patient or their family is more comfortable, the conversation will be easier to get through. The dialog is never easy, but comfortable communication can help to make it less painful.
Ask as Many Questions as You Answer
Find out what your patient or their family members know about the diagnosis. The key here is to ask as many questions as you answer — keep the dialog open and interactive instead of standing there and explaining stuff to patients or family members. Find out what they know and then fill in the gaps and explain their options for hospice, palliative care and other end-of-life options. This is also the time to bring up directives, which we’ll discuss in greater detail in a moment.
No Definite Predictions
“How long do I have?” This is the one question that is probably the most common during end of life care discussions. It is also the hardest to answer because even after a terminal diagnosis, predicting the remaining life of a patient is nearly impossible. A patient with terminal cancer could live for six months to a year after a diagnosis, or they could simply fade away in two weeks with little to no warning. If a patient insists on an answer, try to be as general as possible — talk in months instead of weeks — but ensure the patient is aware of how quickly these things can change. One study has shown that asking yourself the surprise question — Would I be surprised if this patient died in the next 12 months? — can help more accurately predict death in terminal patients. It’s still not an exact science and it shouldn’t be treated as such.
Learn the Patient’s Goals
During this conversation, one of your objectives should be to learn the patient’s goals when it comes to end of life care. Are they seeking to live as long as possible, or simply to remain comfortable for the remainder of their life? These goals will affect treatment options and will determine what your patient or their family member wants to do with the remainder of their time. If the patient wants to refuse treatment, for example, that will affect how the rest of the conversation goes. Don’t start an argument here — respecting the patient’s decision might seem difficult if it goes against your sensibilities as a doctor or a person. When it comes down to it, it’s up to your patient how they choose to live out their final months.
Understand End-of-Life Directives
During this conversation is the best time to start discussing end-of-life directives. Ask your patient about their preferences when it comes to things like DNR orders and organ donation. If a family member is handling care and preparations, find out if the patient had a living will before their condition deteriorated. If so, end-of-life preparations and decisions may already be outlined. If the patient has no living family, if may also be a good time to discuss establishing someone with a power of attorney to ensure their care is handled and their wishes followed. Having all these things planned out before their heath deteriorates can help make funeral arrangements and similar proceedings much simpler after the patient passes away. End of life care conversations are never easy — and arguably, they should never become easy — but they are necessary to ensure a patient with a terminal diagnosis can live the remainder of their life on their own terms. As medical professionals, your job is to provide care, but also to provide information so these individuals can make the most informed decision possible. Be empathetic, but don’t sugarcoat things. Death is a natural part of life, and while we might not celebrate it like some cultures do, there is little we can do to avoid it. Don’t make it scary, and don’t become a robot — just talk to your patients like a human being and help lead them through one of the most difficult parts of their lives.