Tuesday, February 14, 2012

"Closure": Change Expectations for End-of-Life

The Closure online multimedia educational project of the Jewish Healthcare Foundation, Inc., of Pittsburgh, PA, "is an initiative to change expectations for end-of-life." 

The Project's goal is "to empower consumers and healthcare professionals with easy-to-access, simple-to-understand information and resources to make educated decisions about end-of-life care."
No one wants to die. But the truth is everyone’s life will someday come to an end. It’s important to think about what you want, and what you want to avoid.

Closure is not going to make talking about death any easier. Nothing can do that. But our resources and tools will make the process of determining what you want at end-of-life less difficult and confusing.
The online presentations are professionally crafted, substantively accurate, seriously sensitive, and efficiently educational.

The Closure 101 Project offers "a curriculum of educational lessons dealing with an array of complex end-of-life issues."  The lessons cover issues arising from a medical diagnosis and treatments that may lead to decline and death.  How can we maintain dignity, respect, and love during such a stressful and demanding process that involves not only the patient, but a family and friends?

These lessons teach in twelve videos with slides, each introduced on that website:
  1. Questions to Ask the Doctor -- People often have a lot of questions when they learn that they have a serious illness or that a loved-one has developed a life-threatening disease. Where should you start? What are the most important questions to ask? This lesson will help guide you through an open and honest conversation with your doctors.
  2. Prognosis -- Many people with a chronic illness want to know exactly how long they have left to live. While no one can make an exact prediction, understanding your prognosis is very important in determining what treatments you want to pursue. This lesson will explain how to talk to your doctor about your prognosis and highlight what important questions you need to ask.
  3. Decision Making -- There are many treatments which are often tried in patients with a serious, life-threatening illness to attempt to lengthen life. Sometimes these treatments are life-saving. Other times, these treatments may make little or no difference in how long or how well someone lives and may increase his or her suffering. This lesson highlights what decisions you may need to make and what to consider when weighing your options.
  4. Advance Planning -- It’s important for you to plan ahead while you are healthy and able to make decisions about end-of-life. Planning ahead gives you the opportunity to get input from your family, doctors and religious advisors. This lesson explains why advance planning is important and teaches you how to complete a living will.
  5. Hospice and Palliative Care -- Palliative care is appropriate for anyone with a life-limiting disease, including cancer, serious heart disease, end-stage dementia or lung diseases. It focuses not only on physical comfort, but also provides emotional and spiritual care. Hospice is a type of palliative care. This lesson clearly outlines the specifics of both options.
  6. Medicare Hospice Benefit -- The original goal of the Medicare Hospice Benefit (MHB) was to support families caring for a dying relative at home, but that has evolved. The MHB now pays for medical, nursing, counseling and bereavement services to terminally ill patients and their families. This lesson outlines the key points of the MHB so that you can better access the services that you need when you need them.
  7. End-Of-Life Care for Children -- Despite remarkable advancements in medicine, many children with a life threatening illness will die. In this lesson, you will learn about how and why the experience of serious illness and dying is different for children and see what solutions pediatric palliative care can offer in those situations.
  8. Caregiver Stress -- Caring for someone who has become ill or losing a loved one that you were caring for can induce a stress response. We cannot make stress go away but we can change how our brain responds to it. This lesson introduces a series of healthy lifestyle behaviors and the techniques that will reduce the influence of stress on your mental and physical health.
  9. Long Distance Caregiving -- Long distance caregiving has its own unique challenges. This lesson provides you with the tools to overcome those challenges. You will learn about available support and resources as well as new techniques to ensure that you are also taking care of yourself.
  10. When Your Loved One is Dying -- Being a caregiver to someone who is dying can be a meaningful experience. But you may have a lot of questions about what to expect and how to care for your loved one. This lesson will help you gain a better understanding of the changes that are taking place and explain what to do if something goes wrong.
  11. Grief and Mourning -- Death is part of the life cycle that will affect all of us in our lifetime. Grief is one of the most universal human reactions, yet it is unique to each bereaved individual and can be very isolating. In this lesson, you will learn the six tasks of mourning, uncover myths and symptoms surrounding grief and learn where to find support.
  12. Religious and Cultural Issues -- Each religion or culture has its own way of dealing with the fear, moral uncertainty and deeper meaning associated with death and dying. This lesson will introduce you to end-of-life traditions from varying religious and cultural backgrounds.
I viewed most videos and recommend them.  There is no "religious" message or agenda promoted, despite sponsorship by a faith-oriented organization.  The lessons seem suitable for all faiths and cultures.

The website also offers a personalized Self Assessment to help customize and specialize online learning.  If you register, the website can retain logged user information to resume viewing sessions later.

These lessons could be the foundation for group teaching or discussion in a community or church setting.

The Closure website lists many valuable collections of resources, such as:
  • National Resources: Quick links to useful Web sites and online tools that can help you broaden your knowledge about end-of-life care issues and aid in your decision-making process.
  • Southwestern Pennsylvania Resource Directory: A comprehensive guide to resources about end-of-life issues for residents of southwestern Pennsylvania. 
  • Helpful Tools: An index of important documents and tools for end-of-life planning that you can download and complete.
  • Books and Manuals: A listing of books and manuals dealing with end-of-life care issues.
  • Useful Terms: An online glossary of important terms and acronyms for patients and families.
These are valuable end-of-life coping resources that should be made available to patients in treatment centers and hospice facilities everywhere in Pennsylvania.