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Whether you are a patient living with a serious illness or a loved one, there are many helpful resources to help you live well, stay informed and navigate the process of serious illness care planning.

Patient & Family Resources

Talking About Your Illness with Loved Ones

Sharing the future of your illness with family and friends and thinking about how to live well despite it can be difficult, but this guide can help you begin these important conversations.

Talking with Your Clinician About the Future

Thinking about your goals and wishes before talking to a clinician can better prepare you for future serious illness conversations.

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Living Well with a Serious Illness:

Talking About Your Illness with Loved Ones

This resource can help you talk with your loved ones about the future of your illness 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 illness with family and friends may not be easy, but it will help them understand what is important to you. It will also help them understand what is important to you. It will also help them support you now and in the future.

Before you talk to your loved ones, 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.

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.

Check in with your loved one:

UNDERSTANDING

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

INFORMATION

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

How to talk with family or friends:

  • 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 family, maintain independence, be comfortable, live as long as possible, fight the illness, die a natural death, not be a burden, be mentally aware, etc.

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 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 despite the illness.

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 your family ahead of time will ease the burden on your family 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, other family members, or a close friend 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: Talking About Your Illness with Loved Ones
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Living Well with a Serious Illness:

Talking with Your Clinician About the Future

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 our patients.

A good time to talk about your goals and wishes is 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 your family?
  • If you haven’t already identified a Health Care Agent, who would you want to fulfill that role?

The following can be helpful for your team:

  • If you have a Health Care Proxy 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.

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 your family ahead of time will ease the burden on your family 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, other family members, or a close friend 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 always try to provide 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: Talking with Your Clinician About the Future

Planning

Serious illness care planning can at times feel overwhelming. There are many tools available to help better understand the process and prepare you and your family for what may lie ahead. Here are some resources we think may be helpful.

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.

More Info

PREPARE for Your Care is a web-based resource that helps people learn about and prepare for medical decision making. This evidenced-based tool features video stories in English and Spanish, and guides users as they explore their wishes and learn how to discuss them with family, friends and medical providers. PREPARE also offers easy-to-read, legally-binding advance directives for all 50 states in English and Spanish. PREPARE is also a Continuum Project collaborator.

More Info

Additional Resources:

Books

A Beginner’s Guide to the End by B.J. Miller and Shoshana Berger

A Beginner’s Guide to the End
by B.J. Miller and Shoshana Berger

A practical, compassionate, and comprehensive guide to the end of life, and how to live fully until then.

Extreme Measures by Jessica Nutik Zitter

Extreme Measures
by Jessica Nutik Zitter

An ICU physician with a specialty in palliative care offers a framework for a better end-of-life transition.

At Peace: Choosing a Good Death after a Long Life by Samuel Harrington

At Peace: Choosing a Good Death after a Long Life
by Samuel Harrington

A forthcoming book on steps we can take to make dying more comfortable.

Being Mortal
by Atul Gawande

A book on illness, medicine, and what matters most at the end of life.

When Breath Becomes Air by Paul Kalanithi

When Breath Becomes Air
by Paul Kalanithi

An autobiographical memoir about Paul Kalanithi’s life and battle with stage IV metastatic lung cancer, who was diagnosed during his last year of neurosurgery residency.

Frequently Asked Questions

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.

What is the Serious Illness Care Program?

The Serious Illness Care Program is 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.

How does the Continuum Project help patients and their families?

The Continuum Project works to improve the serious illness experience for patients, families, clinicians, and staff. Many clinicians at MGH have been trained on our curriculum and share our vision in promoting a culture of living well with a serious illness. Our work includes resources and educational sessions for patients and families.

What is palliative care?

Palliative care provides specialized, multidisciplinary medical care for people with serious illnesses. It is focused on improving quality of life for both the patient and the family—providing relief from the symptoms, pain and stresses of a serious illness—whatever the diagnosis. It can also be provided concurrently with curative treatment.

What is a serious illness conversation?

Serious illness conversations occur throughout the illness and explore the patient’s values, goals, and wishes. The goal is to support patients and families to live as well as possible with the illness and to be prepared.

Why are serious illness conversations important?

Serious illness conversations are valuable because they help patients experience less emotional suffering, reduce anxiety, and facilitate goal-setting and higher quality of life. They ensure that clinicians are aware of their patients’ wishes, and that patients have an opportunity to express and develop their future plans with their clinician.

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