SERIOUS ILLNESS: Palliative Care | Hospice Care | POLST Form | Coping With Illness | Informed Decisions | Peace & Grace
Diagnosis – What’s Next?
Whether the diagnosis of a serious illness drops into our lives suddenly, without notice, or reveals itself slowly over time, it is never “our plan”. Palliative care physician Ira Byock, MD tells us that “Mortality teaches us a lot about life if we let it.”
This section of theLastJourney.info website is devoted to finding that new path, that different way of being with disease, and to exploring the mystery of life, even as we perceive its final doorway.
Know Your Choices – A Guide for Patients With Serious or Advancing Illness
Massachusetts Department of Public Health Learn more
Handbook for Mortals
Guidance for People Facing Serious Illness
by Joanne Lynn, MD, Joan Harrold, MD, and Janice Lynch Schuster, MFA
A thoughtful guide to approach the final years of life with greater awareness of what to expect and greater confidence about how to make the end of life a time of growth, comfort, and meaningful reflection.
Find this book in your local library or order it online
Life After the Diagnosis
Expert Advise for Living Well with Serious Illness for Patients & Caregivers
by Steven Z. Pantilat, MF
A respected palliative care physicians guide the way through the medical system for people who have received a serious diagnosis. He outlines what steps patients should take, what question to ask and how to interpret answers. An effective guide through our medical system.
Find this book in your local library or order it online.
What is Frailty?
We may hear someone say “he is so frail” without much definition about what this means for short or long term health. Frailty is not a disease. It is a condition of steady, even if slow, deterioration of the functions of our major systems. Care providers are seeing it as an important factor in health decisions made in regard to an aging or seriously ill person whether or not they have a specific disease.
Frailty in Older Adults
by Janet M. Torpy, MD; Cassio Lynm, MA; Richard M. Glass, MD JAMA Forum – Patient Pages
Read the article
The Frailty Syndrome: Definition and Natural History
US National Library of Medicine
Qian-Li Xue, PhD
Read the article
Understanding Disease Trajectories
The Five Trajectories
Supporting Patients During Serious Illness
by Jennifer Moore Ballentine, MA, Executive Director, CSU Institute for Palliative Care
The eBook explains the common trajectories of dying and emphasizes the importance of Advance Care Planning along each trajectory.
Download the eBook FREE from the Institute’s website
Illness Trajectory and Palliative Care
Scott A Murray, Marilyn Kendall, Kirsty Boyd, and Aziz Sheikh US National Library of Medicine
Read the article
Continue the Conversation
Anytime you receive a diagnosis of a serious illness or condition of frailty it is vitally important that you continue having coversations with your loved ones, your Agent and your primary care providers about your wishes for care now and at the end of life. YOur wishes may change as a result of a diagnosis. Making the changes known is important.
Six Voices
A small group of IHI employees — representing a wide range of ages and professional roles — volunteered to try “having the conversation” about end-of-life care with a loved one. In an initial small group meeting, each person developed a plan to talk — including who they wanted to talk to, when, and what they wanted to say. A few weeks later, they came together again to share their experiences. Here’s a video, from the IHI Open School Course. of six of the participants explaining how they felt before they had the conversation; what it was like during the conversation; and how they felt afterward. Watch to video below.
Review your Advance Directives and other documents.
Keep the ongoing conversation about your wishes up to date with your Agent loved ones and care providers.
If you have not prepared an Advance Directive and you have received at diagnosis of a serious illness it is important to think about choices and designate an Agent to advocate for you.
GO TO the Advance Care Planning section of this site for step by step instructions for this process.
Ask for a Palliative Care Consultation.
Discover the possibilities of support for you and your family as you navigate treatments for a serious illness. So many professionals are there to help you with comfort measures, pain management, symptom relief, and spiritual support. All you have to do is ask.
GO HERE to learn more about Palliative Care
Resources for Major Illness & Disease
For extensive information on Alzheimer’s Disease and Dementia:
Go to the Caregiving section of this website
Parkinson’s Disease
Parkinson’s Disease
National Parkinson’s Foundation
Understanding and Living with Parkinson’s Disease Significant resources and information on Parkinson’s disease.
Michael J Fox Foundation
A significant foundation named for the actor who raised the profile on this disease. The website is a major resource for Parkinson’s information.
Government Benefits and Insurance
Parkinson’s and Disability Insurance
One of many resource pages on the Michael J Fox Foundation site.
Understanding Parkinson’s Disease
Dr. Silver covers new thoughts on Alpha Synuclein and it’s role in Parkinson’s Disease. New imaging and biomarkers reveal more about PD Etiology and Pathophysiology. Dr. Silver continues with a review of Dopamine Agonists and one possible side effect, Impulsive Compulsive Disorder, New Advances in Deep Brain Stimulation, new therapies, and a review of Atypical Parkinsonisms.
Lewy Body Dementia Association
An organization devoted to information on this particular type of dementia which can affect people who have Parkinson’s disease.
Rock Steady Boxing
An effective program with certified trainers conducting rigorous exercise programs for people with Parkinson’s. Available in many states and locations.
Cancer
National Cancer Institute
Questions to Ask Your Doctor about Treatment Clinical Trials
Cancer Action Network
Patient quality of life resources and advocacy.
MD Anderson Cancer Center
MD Anderson Cancer Center
A comprehensive cancer information resource.
See Patient & Family and Prevention and Screening sections
American Cancer Society
Palliative or Supportive Care
One of many helpful sources on this site.
I Can’t Believe I Have Cancer
Spiritual care for everyone facing cancer, whoever you are, whatever you are, wherever you are.
Learn more
Cancer Net
A comprehensive resource site for cancer information and resources. Created by ASCO.
The American Society of Clinical Oncologists (ASCO) has created two
excellent publication for cancer patients that are free and can be downloaded
directly from their website: ASCO.org. Entreaty of the tiles below in their search field on their website.
ASCO Answers Cancer Survivorship
Trusted Information to Help Manage Your Care
ASCO Advance Cancer Care Planning – A Decision Making Guide for Patients and Families Facing Serious illness
American Association of Clinical Oncology YouTube Channel
Click Here for Cancer information videos
National Cancer Institute
Questions to Ask Your Doctor about Treatment Clinical Trials
Diabetes
American Association of Diabetes Educators
Heart Disease & Stroke
The Widowmaker – film
A film about the value of heart scans and how they can predict heart disease that may not be seen otherwise and to help prevent progression of untreated heart disease.
Cleveland Clinic Heart and Vascular Institute – Online Educational Videos
A series of videos designed to provide information about heart, vascular and thoracic conditions and treatments
Mended Hearts
Mended Hearts is a national and community-based non-profit organization that has been offering the gift of hope to heart disease patients, their families and caregivers through various programs.
National Emergency Medicine Association
Prevention, Education and Service programs. Home of the National Heart Council.
Lung Disease
Understanding Lung Problems National Institute on Aging
Sleep Apnea resources on MedlinePlus
Lung Diseases resources on MedlinePlus
National Heart Lung and Blood Institute
Kidney Disease
National Kidney CenterJohns Hopkins Resource Center
National Institute of Diabetes and Digestive and Kidney Diseases
National Institutes of Health – National Diabetes Education Program
Liver Disease
MedlinePlus Overview and resources on liver disease
Inspire – American Liver Foundation Liver disease support group and discussion community
Neuromuscular Degenerative Diseases Muscular Dystrophy / ALS
Muscular Dystrophy Association
MDA ALS Caregiver’s Guide
A comprehensive guide you can download free from this website Scroll down to Related Guidebook to find this and other helpful guides.
Project Revoice
Project Revoice is a non-profit initiative with the ultimate goal of ensuring that no one living with ALS will ever have to suffer being robbed of their voice.
MORE:
For resources on other diseases CLICK HERE to go to a disease resource list
thoughtfully created by neurologist Dee Edward Silver, MD.