A Physician's Guide to Talking About Death and Serious Illness

How to have conversations that appropriately prepare patients

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By:

Alyssa Ruderman

On the whole, we -- as humans -- are not great at talking about death. To the surprise of some, that’s no more true than within the walls of a hospital. As this pandemic’s reach widens and death rates increase, so too does the need to be better at addressing it. 

While most doctors believe that it is their responsibility to conduct end-of-life conversations with their patients, the majority of them (almost 70%) are never formally trained on how. As a result, physicians are hesitant to broach the topic, even when their patients are severely ill and death is imminent. 

As a physician, your training centers on problem-solving in order to maintain health, cure illness, and avoid death, effectively making death medical failure. With that framework, it’s no wonder you’d feel ill-prepared to talk about next steps when death is on the table. 

Right now, whether doctors feel equipped to have those conversations is almost entirely dependent upon where you went to school and which hospital you’re working out of.  The objective of this syllabus is to provide a framework for all physicians, no matter where they are, to effectively communicate with patients and their families when it comes to death. We hope that we can make these conversations easier to conduct, more consistent, and more human because ultimately, talking about death is part of talking about life. 

A lot of really great resources exist out there, so we’ve done the work of compiling them into a super easy to grab-and-go format. We’ve got two options on how to dive in:

  1. If you’re looking for a plug and play script, scroll to sections one and two -- we have them in both video form (section one) and written form (section two).
  2. If you’d like to do some reading yourself to compile your own best practices and scripts, scroll to section three for our recommended resources.

Section 1: Sample Video Script

A framework created in Partnership with Dr. Michael Jin. 

Section 2: Sample Written Script

Two of the absolute best resources we’ve found that have been readily used and patient-tested are A Physician’s Guide to Talking About End-of-Life Care by Richard B. Balaban, MD, and the Serious Illness Conversation Guide, first created by doctors Atul Gawande and Susan Block out of Ariadne Labs. The latter has been used to train over 6,500 clinicians globally.  Below, we’ve pulled out sample language from both of these guides: 

2.1 Initiate the Conversation. 
It’s important here to clearly state the purpose of the conversation and ask for permission to continue. Be empathetic and passionate -- patients and families are much more trusting when they feel their doctor truly cares. Assure them that they’re not alone.Before a prognosis is certain: “I know this is a very difficult time for you and your family. You have never been this sick before, and I know that it must be frightening to you. I want you to know ...we will deal with it together. I would like to take a few minutes for us to begin discussing an important topic—I'd like to know how I should care for you if you were to become very ill.Once a prognosis is certain: “I’d like to talk about what is ahead with your illness and do some thinking in advance about what is important to you so that I can make sure we provide you with the care you want — is this okay?”

2.2 Communicate Your Understanding of  The Prognosis 
Delivering bad news is hard. As a result, it can be tempting to downplay the gravity of a patient’s condition. It’s important that you resist the urge to sugarcoat and instead kindly, but directly address the reality of what’s at hand. There is no room for misinterpretation. General Approach: “I want to share with you my understanding of where things are with your illness...”Time-based Approach: “I wish we were not in this situation, but I am worried that time may be as short as [time range].” or Most people with [illness] who are at your stage of the disease, continue to do very well for [time period]. But that is the average patient, and I cannot predict exactly how you will do. I certainly hope that you will do better than average, but it is also possible that you may do worse.”Function-based: “I hope that this is not the case, but I’m worried that this may be as strong as you will feel, and things are likely to get more difficult.”If the prognosis is uncertain: “It can be difficult to predict what will happen with your illness. I hope you will continue to live well for a long time but I’m worried that you could get sick quickly, and I think it is important to prepare for that possibility.”

2.3 Clarify Their Understanding + Ask Questions 
It is imperative that you check in with your patients to make sure they understand the information you’ve shared with them. In times of heightened anxiety, patients will often require repeated explanations. “I want to be certain that I have clearly explained your medical situation. Can you give me your understanding of what is ahead for you?”“How much information about what is likely to be ahead with your illness would you like from me?”

2.4 Create a Plan + Set Goals
Your role, once death has been acknowledged as the likely outcome, is to get your patient thinking about what comes next for them, to understand how to make them most comfortable and to set goals. “When people get to this stage, some people feel like they want to keep fighting, and other people feel like they just want to be comfortable and let things happen as they may. How are you feeling now?”“What are your most important goals if your health situation worsens?”“What abilities are so critical to your life that you can’t imagine living without them?”“If you become sicker, how much are you willing to go through for the possibility of gaining more time?”

2.5 Close Out 
When you feel you have a solid grasp on your patient’s wishes, repeat those wishes back to them and ask for confirmation that you’ve gotten it right. With those wishes in mind, make appropriate recommendations and ask again if that plan aligns with how they’re feeling. Close out by reminding them that you’re there to help them through these next steps. “From what you have said, let me suggest the following plan. Please tell me if I am correctly representing your views.”“I’ve heard you say that ___ is really important to you. Keeping that in mind, and what we know about your illness, I recommend that we ___. This will help us make sure that your treatment plans reflect what’s important to you. How does this plan seem to you?”“I will do everything I can to help you through this.”

Section 3: Resources

3.1 Articles + Interviews

The Status of Medical Education in End-of-life Care, A National Report
Students and residents in the United States feel unprepared to provide, and faculty and residents unprepared to teach, many key components of good care for the dying. Current educational practices and institutional culture in U.S. medical schools do not support adequate end-of-life care, and attention to both curricular and cultural change are needed to improve end-of-life care education.

NPR Interview with Dr. Pauline Chen and Dr. Beth Lown
Doctors often struggle with conversations about death — navigating the murky waters of when and how to convey the risks of procedures and prospects for life expectancy. When doctors are less than forthcoming, out of sensitivity or haste, difficult situations become even more complex.

Never Say ‘Die’: Why So Many Doctors Won’t Break Bad News 
Dr. Ron Naito, an internist in Portland, Ore., was diagnosed with stage 4 pancreatic cancer in August 2018. His doctor wouldn’t confirm the terminal diagnosis, even though Naito read the test results and understood what they meant.

Final Chapter: Californians’ Attitudes and Experiences with Death and Dying
According to a CHCF survey of Californians conducted in late 2011, a large majority say they would prefer a natural death if they became severely ill, rather than have all possible medical interventions provided. They would prefer to die at home instead of in a hospital or nursing home. And they want to talk with their doctor about their wishes for care at the end of life. However, Californians don’t always get what they want, as this research shows.

3.2 Tactical Trainings + Resources

VitalTalk
Learn skills that matter. VitalTalk’s free resources are organized into topics (or “tools”) that all clinicians need. Within each tool below are a series of related videos and access to “Quick Guides” to provide real-time support and reminders.

Approaching Difficult Communication Tasks in Oncology + the Ask Tell Ask Method
In this article, we will draw on empirical studies and expert practice to describe important considerations for physicians and other clinicians about communicating with patients and their families. After discussing some general considerations in communication skills, the rest of the article uses a trajectory model of illness to identify key communication tasks. These tasks outline a cognitive map of communication that physicians can follow during a patient's experience.

The Serious Illness Conversation Guide
The Serious Illness Conversation Guide is the backbone of the Serious Illness Care Program. The current iteration consists of steps to elicit important information from your patients about their goals and values: setting up the conversation, assessing the patient’s illness understanding and information preferences, sharing prognosis, exploring key topics, and closing and documenting the conversation.

A Physician's Guide to Talking About End-of-Life Care
This paper presents a practical 4-step approach to conducting end-of-life discussions with patients and their families: (1) Initiating Discussion, (2) Clarifying Prognosis, (3) Identifying End-of-Life Goals, and (4) Developing a Treatment Plan. By following these 4 steps, communication can be enhanced, fears allayed, pain and suffering minimized, and most end-of-life issues resolved comfortably, without conflict.

3.3 Books + Movies

When Breath Becomes Air Paul Kalanithi 

Being Mortal Atul Gawande

How We Die: Reflections of Life’s Final Chapter Sherwin B. Nuland

Beginners Guide to the End: Practical Advice for Living Life and Facing Death BJ Miller and Shoshana Berger 

The Year of Magical Thinking Joan Didion

On Death and Dying Elizabeth Kubler Ross

Alternate Endings HBO docuseries

Categories: Healthcare and Benefits, Planning Ahead, COVID 19

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