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The Continuum Project at Massachusetts General Hospital supports interprofessional clinicians who care for patients with serious illnesses and their families. As part of our systems-based approach for serious illness care, we provide specialized training that builds upon and enhances non-palliative care clinicians’ communications skills for having serious illness conversations. We also promote a coordinated approach to engage patients in the process of serious illness care planning, where and when they need it.

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Serious Illness Conversation Guide

At MGH, the Continuum Project works to implement the Serious Illness Care Program, which was developed by palliative care experts at Ariadne Labs to engage patients and families in serious illness care planning. The Serious Illness Conversation Guide is the centerpiece of our training program, which offers clinicians language to ask patients about their goals, values, and wishes. The guide is one element of our systems-based approach to supporting clinicians in having and documenting these important conversations.

As part of our work, we have collaborated with various MGH specialties to adapt the Serious Illness Conversation Guide for their respective patient populations.

Serious Illness Conversation Guides:

Serious Illness Conversation Guide

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Serious Illness Conversation Guide – Spanish

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Serious Illness Conversation Guide – Pediatrics

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Materials for Patients

The following are resources on serious illness care planning that clinicians may share with patients.

Living & Aging Well: Four steps for talking with the important people in your life

This guide can help you talk with the important people in your life about what matters to you in your care.

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Living and Aging Well: Talking with your clinician about what matters to you in your care

This guide can help you talk with your clinician about what matters to you in your care.

Learn More
Printable PDF: Living & Aging Well: Four steps for talking with the important people in your life
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Living & Aging Well: Four steps for talking with the important people in your life

Living & Aging Well: Four steps for talking with the important people in your life

This guide can help you talk with your loved ones about the future of your health and about how you are coping now to live as well as possible. It is based on what you have already talked about with your clinician.

 

Talking about your health with the important people in your life may not be easy, but it will help them understand what is important to you. It will also help them support you now and in the future.

 

Before you talk to the important people in your life, think about when and where you want to talk. Choose a time and place when you feel relaxed. Be sure you have time to talk for a while. You can use the words in this guide or use your own words — whatever is easier for you.

Step 1: Start the conversation

  • I am doing OK right now, and even though there is no rush, my clinicians think we need to begin talking about my future care.
  • They believe in being prepared and want to know my goals and wishes for medical care.
  • Since you are important to me, I’d also like you to be part of the conversation.
  • If at some point I can’t speak for myself, I want you to be able to make decisions for me.

 

Step 2: Check in with your loved one

UNDERSTANDING

  • What is your understanding now of where I am with my health?

INFORMATION

  • I know that it may not be easy, but I would like to share information about my health with you. Is that okay?
  • My clinician and I talked about the outlook for my health – can I share that with you?

 

Step 3: Talk about what matters most

  • HOPES I hope that in the days ahead that I will continue to…
    EXAMPLE: feel well for a long time, or that I can get stronger.
  • WORRIES I am worried that in the days ahead I…
    EXAMPLE: may get weaker, or that time may be shorter than we hope.
  • WHAT’S MOST IMPORTANT I’d like to share what is most important to me if my health were to worsen…
    EXAMPLE: spend time with the important people in my life, maintain independence, be comfortable, live as long as possible, fight the illness, die a natural death, not be a burden, be mentally aware, etc.

 

Step 4: Talk about how you are coping

  • Most people with serious illness swing back and forth between times when they are more worried and times when they are more hopeful. Being worried and hopeful is a healthy, natural part of coping.
  • Talking about your coping helps loved ones know how to best support you.

Everyone is different and there are lots of  healthy ways to cope.  You can use the list included in the downloadable PDF to help you identify approaches to live well.

Why is this important?

Thinking about and sharing your wishes will give you more control over your care. It also helps to prepare your loved ones to make decisions for you if you can’t make them at some point in the future. Talking with the important people in your life ahead of time will ease the burden on them of making hard decisions for you if you can’t speak for yourself.

 

You may find it helpful to bring other people to your visit.

You can choose to bring the person who is your Health Care Agent or another important person in your life to your visit so they can be a part of the conversation.

 

Talking about the future won’t change your ongoing care.

Talking about the future won’t change the plans we have made so far about your treatment, unless you want it to. We will continue providing the best possible care to treat your illness.

 

We understand that your wishes may change over time.

This is the beginning of an ongoing conversation and you can always change your mind. We know that you may have other questions or concerns in the future. We will continue to support you and answer your questions so that you can make informed decisions about your care.

This material has been modified by us. The original content can be found at https://portal.ariadnelabs.org and is licensed by Ariadne Labs under the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License. Ariadne Labs licenses the original content as-is and as-available, and makes no representations or warranties of any kind concerning the original content or concerning this material, which Ariadne Labs has not reviewed or endorsed.
Printable PDF: Living and Aging Well: Talking with your clinician about what matters to you in your care
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Living and Aging Well: Talking with your clinician about what matters to your in your care

Living and Aging Well: Talking with your clinician about what matters to you in your care

Understanding what matters to you about your health is important to us at MGH. Over time, your clinician would like to talk with you about your goals and wishes so, together, you can plan for your care together. These discussions are an important part of the care we provide for all of our patients.

 

A good time to talk about your goals and wishes is often when you are feeling well and before there are any big decisions to be made about your medical care. Patients who think through what is important to them and what their wishes are often feel less anxious, more at peace, and more in control of their situation.

Here are some questions you can think about:

  • What would you like to know about your illness and what may happen in the future?
  • What kind of information would help you make decisions about your future?
  • What does living well look like to you?
  • Thinking about your medical problems, what are you worried about?
  • What kinds of medical care do you want or not want?
  • What do you think it would be like to share these thoughts with the important people in your life?
  • If you haven’t already identified a Health Care Proxy (medical decision maker), who would you want to fulfill that role? A Health Care Proxy (medical decision maker) is someone who can make medical decisions for you if you are too sick to make your own decisions.

The following can be helpful for your team:

  • If you have a Health Care Proxy (medical decision maker) form that names someone to be your agent, please bring a copy.
  • If you have a Living Will or Advance Directive, please bring a copy.

If you don’t have these documents or have questions about them, talk with your clinician or find resources at prepareforyourcare.org.

Why is this important?

Thinking about and sharing your wishes will give you more control over your care. It also helps to prepare your loved ones to make decisions for you if you can’t make them yourself at some point in the future. Talking with the important people in your life ahead of time will ease the burden on them of making hard decisions for you if you can’t speak for yourself. Getting health care often involves choices that impact your life and wellbeing in different ways. Treatments only work if they work for you.

 

You may find it helpful to bring other people to your visit.

You can choose to bring the person who is your Health Care Proxy (medical decision maker), other family members, a close friend or other important people in your life to your visit so they can be a part of the conversation.

Talking about the future won’t change your ongoing care.

Talking about the future won’t change the plans made so far about your treatment unless you want it to. We will continue providing the best possible care to treat your illness.

We understand that your wishes may change over time.

This is the beginning of an ongoing conversation and you can always change your mind. We know that you may have other questions or concerns in the future. We will continue to support you and answer your questions so that you can make informed decisions about your care.

This material has been modified by us. The original content can be found at https://portal.ariadnelabs.org and is licensed by Ariadne Labs under the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License. Ariadne Labs licenses the original content as-is and as-available, and makes no representations or warranties of any kind concerning the original content or concerning this material, which Ariadne Labs has not reviewed or endorsed.

Resources for Your Patients

Cake is a secure app that makes it easier for people to discover their advance care planning preferences and share them with loved ones. You can create an online profile and answer simple questions about your healthcare, legal/financial, funeral and legacy wishes. In this profile, you can create documents like a Health Care Proxy and Advance Care Plan. All preferences are securely stored and saved to your profile, which can only be accessed by family or loved ones you choose. Cake is also a Continuum Project collaborator.

The PREPARE Movie Toolkit for Group Events can be used in group medical visits, clinics and other community settings to educate patients and families about the serious illness care planning process. You do not need experience with serious illness care planning to host an event, because all information is provided in the PREPARE movies and toolkit.

Additional Resources

Internal Resources

Apollo the MGH Intranet website. This link brings you directly to the Continuum Project’s intranet page.

Pulse the system-wide Intranet website.  Employees can find information about system initiatives and internal events.

Primary Care Office Insite (PCOI) the web-based Intranet application that provides ready access to a collection of information useful in primary care.  MGH Primary Care Providers can find additional resources related to Serious Illness Care.

External Resources

The Harvard Medical School Center for Palliative Care (HMS CPC) seeks to help create a world where all patients living with serious illness are cared for by clinicians who address their suffering and promote their quality of life. CPC offers training programs to multi-disciplinary physicians, nurses, social workers, chaplains, and other allied health professionals who are interested in developing additional expertise in palliative care.

Ariadne Labs is a joint health system innovation center of Brigham and Women’s Hospital and Harvard T.H. Chan School of Public Health working to save lives and reduce suffering by creating scalable solutions that improve healthcare delivery at the most critical moments for people everywhere. Ariadne Labs developed the Serious Illness Care Program and Guide that the Continuum Project is implementing at MGH.

The PREPARE Movie Toolkit for Group Events can be used in group medical visits, clinics and other community settings to educate patients and families about the serious illness care planning process. You do not need experience with serious illness care planning to host an event, because all information is provided in the PREPARE movies and toolkit.

The Center to Advance Palliative Care (CAPC) is a national organization dedicated to increasing the availability of quality healthcare for people living with a serious illness. CAPC provides healthcare professionals and organizations with the training, tools, and technical assistance necessary to effectively meet this need.

Cake is a secure app that makes it easier for people to discover their advance care planning preferences and share them with loved ones. You can create an online profile and answer simple questions about your healthcare, legal/financial, funeral and legacy wishes. In this profile, you can create documents like a Health Care Proxy and Advance Care Plan. All preferences are securely stored and saved to your profile, which can only be accessed by family or loved ones you choose. Cake is also a Continuum Project collaborator.

Clinician FAQs

Can I attend a Serious Illness Care training at MGH?

To inquire about serious illness care trainings, please contact Kelly Spinelli at MGHContinuumProject@partners.org

To register or view upcoming trainings, please click on the following training link

Can non-physicians use the Serious Illness Care Guide to have serious illness conversations with patients?

Absolutely. Our program encourages an interdisciplinary, team-based approach to initiating and documenting serious illness conversations that includes advance practice providers, nurses, social workers, chaplains and other healthcare professionals.

How does the Continuum Project support clinicians?

The Continuum Project supports clinicians providing care to seriously ill patients and their families through the Serious Illness Care Program, a system-based approach for improving serious illness care developed at Ariadne Labs. The program includes (1) tools for patients and clinicians, including a clinician-facing serious illness conversation guide, (2) training for clinicians, and (3) systems change such as electronic medical record modification. The Serious Illness Care Program is being implemented at institutions across the U.S., including MGH.

What is the Continuum Project?

The Continuum Project is a Massachusetts General Hospital (MGH) culture change initiative that grew out of a 2015 taskforce convened by MGH president, Dr. Peter Slavin, and charged with developing a comprehensive strategy to care for patients and families facing serious illness. Our team works to implement the Serious Illness Care Program at MGH, to engage patients and families in living well now and preparing for the future, and to develop educational material for clinicians, patients, and families.

Where are serious illness conversations documented?

At MGH, serious illness conversations are documented in the EPIC Advance Care Planning (ACP) Module. This enables clinicians across specialties to be able to review and document serious illness conversations that were conducted over time with patients, to ensure that the care provided to patients are aligned with a patient’s wishes.

Why are serious illness conversations important?

Serious illness conversations are valuable because they help clinicians learn about their patients’ wishes, and give patients an opportunity to express and develop their future plans with their clinician. Patients who have serious illness conversations with their care team experience less emotional suffering, reduced anxiety, and report a better quality of life.

Go to Patients & Families FAQs

Publications

The Continuum Project partners with interprofessional clinicians from MGH specialties who develop additional expertise in palliative care through a two-week palliative care course. These scholars help us optimize workflow, promote local culture change, and publish implementation science scholarship.

Highlights from published Continuum Project research are included below.

March 2019
To Prepare Patients Better: Reimagining Advance Care Planning

Leah B. Rosenberg, MD; Jeffrey Greenwald, MD; Juliet Jacobsen, MD

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June 2019
Integration of a palliative care specialist in an amyotrophic lateral sclerosis clinic: Observations from one center.

Kate Brizzi, MD; Sabrina Paganoni, MD; April Zehm, MD; Fabiola De Marchi, MD; James D. Berry, MD

Learn More
January 2020
Neurology clinicians’ views on palliative care communication

April Zehm, MD; Amanda M. Hazeltine; Joseph A. Greer; Lara Traegar; Margaret Nelson-Lowe; Kate Brizzi, MD; Juliet Jacobsen, MD

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