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End-of-Life Conversation Guide

Goals of care conversations 

Discussion about end-of-life care and preferences with patients and their families are some of the hardest but often rewarding conversations. Most patients and their families shared that they wish their healthcare providers brought up this topic earlier so that they might have been more prepared. They also share that having a trusted medical professional bring it up is helpful when they feel hesitant, for many reasons, to bring it up with their loved one. Many healthcare providers share that they are afraid to start these conversations out of fear of taking away patients' and families' hope. Studies show, however, the opposite. Patients who know their prognosis and what to expect are able to redirect their hope to more attainable goals. Clear and open discussions reduce fear and anxiety and help patients receive the right care at the right time.

These conversations give the patient and their loved ones an opportunity to share their wishes and concerns with those willing to listen and the opportunity to ask questions. Although sometimes these discussions are rejected, it is still an opportunity to learn about our patients' wishes by asking questions. 

Resources:

There are many resources for learning more about these conversations. A great resource is the book "Mastering Communication with Seriously Ill Patients: Balancing Honesty with Empathy and Hope" by Anthony Back, Robert Arnold and James Tulsky. This book is short, easy to read and defines the specific communication tasks involved in these conversations. Topics include delivering bad news, transition to palliative care, discussing goals of advance-care planning and do-not-resuscitate orders, existential and spiritual issues, family conferences and more. 

Another great online resource for healthcare providers is the Serious Illness Conversation Guide from Ariadne Labs which includes steps for setting up the conversation, patient-tested language, key topics and more.

 

A resource for your patients and families, The Conversation Project is an excellent resource to work through identifying what is important at the end of life. 

The Conversation

No two patients are alike and similarly, no two end-of-life journeys are the same. Many people have fears about this journey including worries about pain, losing control, missing out on loved ones' futures, dying alone or being a burden among many other concerns. Healthcare professionals can help to alleviate these fears and the taboo of death by listening to them with empathy and using compassionate curiosity to ask questions to ensure complete understanding of their concerns.

 

Assess understanding of diagnosis/prognosis:

“What have your doctors told you about your condition/illness/disease?”

“Have they talked about or told you what this might mean for you in the future?”

“From what you know, is your cancer/illness improving?”

 

Define the patient’s goals for care

“What do you hope most for in the coming months, weeks or days?"

"What are you most concerned about?” 

"When you think about your future, what feels the most important to you?"

The patient might express a desire to be comfortable, to stay at home or to not become a burden. 

 

Reframe goals

 “I wish we knew if we could keep you alive until your grandson's wedding; but unfortunately, we can’t know. Perhaps we can brainstorm ways for him to know how special he is to you on that day, like a letter to him or a short video.”

 

Identify care needs

“It can be difficult to care for a family member at home, and I hear that you do not want to be a burden to your daughter. Would it be okay if we talk a little bit about ways to help her care for you at home?"

 

Summarize and link goals with care needs

“What I am hearing you say is that it is most important for you to stay at home and spend time with your family but you are afraid of being a burden. To help keep you at home and to support your daughter in caring for you, it might be helpful to have a nurse come to your home or to have someone help you with bathing.  Is that right?” 

Introduce Hospice

“One of the best ways to help you stay home and to support your daughter is a program called hospice. Have you heard of hospice?”

"Have any of your loved ones received hospice care? Was it a good experience?"

“Hospice is able to provide more services and support at home than most other care programs. They are there to support you and your loved ones”

 “The hospice team has a lot of experience caring for seriously ill patients at home.”

Respond to Emotion before giving more information

Acknowledge response

“You seem overwhelmed/surprised to hear that your time may be shorter than you thought.”

“I can see it’s difficult for you to talk about hospice.”

 

Legitimize reaction

“Many people feel like you do when they hear how sick their loved one is and that hospice is a possibility.”

"It's normal to have these feelings."

 

Explain hospice goals

“Hospice helps people live the best day to day life they can for as long as they can.”

"Hospice is not about death, it is about living the best life possible for the time that you have."

“Hospice doesn’t help people die sooner. Hospice helps people die naturally, in their own time.”

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