End-of-life care is challenging on many levels. For many, death is a taboo subject as they try not to think about the notion that life can abruptly end. In their heart of hearts, they may know that preemptively preparing for end-of-life care situations is a rational way to go about their healthcare plan, regardless of their current health status.
But despite that, having open and direct end-of-life care conversations may be met with resistance. Knowing that, these conversations have to be addressed with tact and care. And in this post, we’ll help you make them as frictionless as possible.
What is End-of-Life Care?
End-of-life care refers to all care given when treatment to cure or control the disease has been stopped. Thus, end-of-life care generally entails treatment to reduce symptoms and pain, while keeping the patient as comfortable as possible. It also includes emotional, social, and spiritual support – often for the patient and their family.
Why Are End-Of-Life Conversations So Important?
Death is not a topic many of us want to talk about. However, when a terminal patient approaches the end of their life, they often wish to discuss their fears, concerns, and needs. Due to the intense nature of the conversations, the patient may wait for a clinician to initiate that discussion. This is often a mistake. In a California Health Care Foundation survey, almost 80% of individuals say they would like to have this conversation with their physician, but only 7% have had this conversation with a doctor.
End-of-life conversations are about more than mere logistics. They are about dealing with the fear of dying, achieving important goals, and ensuring that at-home care or a hospice meets the needs of patients and their family. On top of that, these discussions need to be culturally appropriate, tactful, highly personalized, and with respect because decisions may change.
Most importantly, end-of-life conversations need to begin early. Ideally advance care planning conversations should happen before a serious illness, but this is often not the case. That’s why it’s important to talk with terminal or potentially terminal patients soon after diagnosis to provide them with a clear prognosis and give them enough time to plan their next steps, as this may be the first time they have an end-of-life conversation.
What Makes It So Difficult for Clinicians to Talk About End-of-Life Care?
One of the most significant obstacles is that physicians may see death as a failure and shy away from conversations around it. What’s more, many healthcare providers are not appropriately trained to engage in these conversations effectively. A survey of 1455 medical students revealed that only 18% received formal training in end-of-life care.
Physicians in palliative care and geriatric medicine are, unsurprisingly, the best prepared to engage in these conversations. And, understandably, some clinicians may be personally uncomfortable with talking about death. Luckily there continues to be more training and education available, making it easier engage in effective conversations.
How to Start Talking About End-of-Life Care
How should physicians go about having these conversations? Undoubtedly, this process can turn out to be quite challenging, so here are some steps to help you through.
Think About What Matters to the Patient and Their Loved Ones
For most terminally-ill patients, there comes the point when they may no longer wish to continue invasive treatment and want to die with dignity, an essential factor to keep in mind when trying to figure out the best option available for your patient.
You also need to talk to the patient and their family about their fears, needs, and desires. For example, if the patient is religious, coordinating with a priest, minister, rabbi, or similar religious figure can help provide spiritual support.
If the patient has end-of-life goals – such as seeing a particular place or person – talk about these goals early on to establish if and how they can be achieved. It is important that these goals be reflected in advance care planning documents such as a POLST form or an advance directive. It’s also important to create new documents if a goal is achieved, and the individual would therefore opt for a different care preference than stated on the previous document.
Plan Out the Discussion
Avoid clinical language when talking about procedures, but make sure that you do bring up important questions. Some questions to include:
- What medical interventions would you be comfortable with?
- How do you envision your last days?
- Is there anything special you want to do or achieve before you go?
- If you are unable to communicate your needs, who should be your medical power of attorney?
- How can we help you fulfill your spiritual and emotional needs?
Each discussion will be unique, affected by the individual circumstances of the patient and family involved. Be honest about the prognosis so they can make the best decision for their final days.
Also, if you need more information on how to improve communication when there’s a clear need to have a difficult discussion with your patients, you may want to leverage these resources available to help clinicians guide end-of-life conversations:
- Serious Illness Conversation Guide, Ariadne Labs
- Advance Care Planning – Conversation Guide, Coalition for Compassionate Care of California
- Conversations Guides and Toolkits, The Conversation Project
Once you have a solid idea of what you are going to say, just start talking. A little bit of small talk can ease the patient into things, but make sure that everything you say is tactful and appropriate. More patients and families will expect you to initiate this conversation at some point, and will likely be relieved that you have asked to discuss their last days.
Don’t forget, there are two CPT codes that you can use for advance care planning conversations.
- 99497 covers the first 30-minute conversation
- 99498 covers all additional 30-minute conversations
It’s also important to note that due to the pandemic, these codes are able to be used for telehealth appointments, including audio-only appointments.
Keep the Conversation Going
Some patients may have a lot to say. Some may already know what they want, but in most cases, you need to help the patient communicate what’s on their mind. That is why it may be useful to refer to some of the tools listed above, or complete additional training to effectively engage in these conversations.
To ensure nothing crucial slips through the cracks during the conversation, ask clarifying and follow-up questions. If the conversation gets too difficult, it’s okay to split it into manageable segments. This may be the first time patients are having these conversations. In order to ensure their care decisions truly reflect their goals and values, they may want to think about their options and/or discuss with family members and other loved ones.
What Are the Next Steps?
When having this conversation with your patient, use it to inform your them about their treatment plan. If the patient has expressed a desire not to have specific invasive treatments, then it’s appropriate to document this in the appropriate medical order. If they opt for comfort measures only, it is important to document this as well.
Make sure the patient knows what their treatment selections mean. Keep all of the patients’ wishes in writing, ideally digitally, so they can be available to other providers, such as the hospice provider when the time comes.
Having these difficult end-of-life conversations with your patients helps you provide them and their families with better care, which should always be a paramount priority. While talking about death is never easy, it is your responsibility to help your patients prepare for the end.