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FAQsSharing 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.
Thinking about your goals and wishes before talking to a clinician can better prepare you for future serious illness conversations.
This guide 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 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.
UNDERSTANDING
INFORMATION
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.
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 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 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.
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.
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 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.
If you don’t have these documents or have questions about them, talk with your clinician.
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 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 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.
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.
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.
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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.
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A practical, compassionate, and comprehensive guide to the end of life, and how to live fully until then.
An ICU physician with a specialty in palliative care offers a framework for a better end-of-life transition.
A forthcoming book on steps we can take to make dying more comfortable.
A book on illness, medicine, and what matters most at the end of life.
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.
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.
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.
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.
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.
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.
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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