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Section 11
Patient Resources |
Advice to remember in those first few days after you learn the bad news; things you need to know from your doctors and other health care staff
A Guide To First Steps (after learning diagnosis) - From "On Our Own Terms" Bill Moyers on dying: some suggested first steps for those facing a serious illness:
A . Personal Dignity And Privacy; B. Informed Participation; and C. Competent Care
Communicating Your End of Life Wishes(PDF Format) - When it comes to creating memories and sharing in significant life events, the family is the focal point for commemoration and celebration. We plan for weddings, the birth of a child, going off to college, and retirement. Despite the conversations we have for these life events, rarely, if ever, do we have conversations about how we want to live in the final phase of our lives & until a crisis hits. This document helps.
Creating Your Own Funeral or Memorial Service -From Beyond Indigo, the following articles written for patients. Click on topic to article.
Decisions About Resuscitation (CPR) from Handbook For Mortals - When you are seriously ill, you may find this procedure, called cardiopulmonary resuscitation (CPR), to be worthless or even deeply disturbing. While you may be grateful for the time you have, or at least willing to endure whatever time fate hands out, you might well not want someone to disrupt your time of death with a flurry of activity that is doomed to have little effect.
from Handbook For Mortals
People with very serious disease may prefer not to have a ventilator or to have one removed. Gives reasons not to use a ventilator.
Physician Information: Depression saps a person's energy, steals the pleasure in life, and even makes it hard to eat, sleep, talk, concentrate, or hold down a job. Just recognizing depression can be a sizable hurdle in itself. It may seem impossible to believe right now, but depression is treatable. You don't have to--or deserve to--live with such an empty feeling.
Ethical wills: preserving your legacy of values for your family - Today, ethical wills are most often written and shared while the writer is still alive. When you write an ethical will, you learn a lot about yourself. It can provide a sense of purpose and a sense of control in your life. It is a way to affirm the past and be positive about the future. It allows for putting your personal "signature" on what universal values mean to you (e.g., love, truth). It opens the door to forgiving others and being forgiven, which heals relationships.
Enduring and Changing - from Handbook For Mortals. Consider how you can best meet the challenges that await you. Be compassionate toward yourself. Allow yourself to find a measure of joy in your life, despite the sadness you are sure to feel. Extending the same respect, concern, and affection to yourself that you would offer someone else will help you live fully while dying.
Finding Meaning - Handbook For Mortals - Spirituality, religion and relationships. We each get our "brief time on stage," and then we are gone. Sometimes everything can seem so pointless. Why bother to live? Nothing is so deeply human as the search for meaning. Most of us seek life's meaning beyond the boundaries of our physical life. Many discover that finding meaning that transcends physical limits becomes important to them as they try to live fully despite serious illness. Such searching takes many forms. Some pursue meaning through their religious faith, some in family and friends, others in good works or the goodness of humanity, and others in nature. However you find meaning, your search for it is ordinarily one of the most important projects for the end of life.
Forgoing Medical Treatment-Handbook For Mortals - Many people say that they do not not want to be tied to machines at the end of life, but how does one get "just the right amount" of treatment? Many treatments are started because there is still some real chance that the patient will improve. Even if everyone thinks the patient is dying, some treatments may be started in hopes of improving comfort. So artificial life support may become an issue for discussion or decision, even if you have plans not to use such treatments when you are "terminal" or the situation is "hopeless." Artificial nutrition; Thinking about life-sustaining treatments; Trial of treatment and Stopping treatment.
Handbook For Mortals - People are afraid of dying alone or being attached to life support in a hospital. Some fear running up huge medical bills that will bankrupt their families. And many fear the loss of dignity that comes with being very ill and dying. But when you are dying, or watching someone you love die, the issue hits home, leaving you feeling over-whelmed, helpless, and afraid. Thinking about hastening death, before it becomes an urgent question in your own life, can help you to understand your current options and to discuss your fears with your family or health care team.
Helping Yourself Live When You Are Dying - Acknowledge You Are Dying; Questioning the Meaning of Life; Accept Your Response to the Illness; Respect Your Own Need For Talk, For Silence; Telling Your Family and Friends You Are Dying; Be an Active Participant in Your Medical Care; Be Tolerant of Your Physical and Emotional Limits; Saying Good-bye; Finding Hope; Embracing Your Spirituality; Reaching Out For Support
from Handbook For Mortals - Regardless of your illness, you are likely to share many concerns with others who face life-threatening disease, including the fears, worries, and needs for information and support that accompany this critical time in your life. Your particular illness will shape some of what you can expect to happen, and even how much can be predicted. It helps to know that doctors often can give only very general guidance on how long you will live, and what problems are likely to arise. Talking about your prognosis; Questions you want to have answered; Keeping up with your prognosis; concerns about: heart disease/cancer/lung disease/kidney failure/HIV-AIDS/dementia and dying when very old.
Dear Doctor: I wish to inform you of my views about decisions to be made at the end of my life: a letter informing your doctor of your views about decisions to be made at the end of your life
Handbook for Mortals - Living with a serious illness can open up an unexpected variety of new possibilities. Serious illness can be a time of growth, meaning, and healing. Many people find, often to their surprise, that the period of time when life may be short is a very precious time. When you are dying, you should do those things you have always wanted to do. Families and friends may want to hear your old stories one more time and to share with you their hopes and dreams and worries. They may look to you for blessings and advice. You and those you love will often look to a shared faith in God, nature, and each other to make some sense of life and death.
Planning Ahead - Handbook For Mortals -Most of us do not plan for serious illness and death. And many of us feel that if we dont talk about bad things, they wont happen to us. However, talking, planning, and being better prepared for the end of life can let you live fully and more comfortably in your final days. Have you thought about the care you want during a severe illness or as you are dying? Have you talked with your family about plans to ensure you will get the care that you want? When you are very sick, you are likely to have some times when you cannot say what you want done. By deciding some things ahead of time, you can have a say in your care. Why should I make plans now? Values History Question-naire; Definition in Advance Care planning; Talking to family and completing forms; Questions to ask your doctor to help you plan ahead; Making Sure your wishes are respected and followed; What else should I plan for? Questions and answers about Advance Directives.
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It's All About Talking: This booklet introduces you and your loved ones to the issues surrounding end-of-life decision making. It's all about talking- talking to your loved ones about your health care preferences; talking to your doctor about your options so that you can make informed decisions. Talking before a crisis can help you and your loved ones prepare for any difficult decisions related to health care at the end of life. Exploring your thoughts and talking about your choices is an ongoing process. Start by planning for your end-of-life care
Handbook For Mortals - When you put something into words, sometimes it is more "real" than if you hadn't mentioned it. Often, however, the future becomes less threatening when you name and describe it. Until then, your thoughts and feelings are often too vague to confront and manage. And, of course, you might be afraid of what kind of response you will get when you speak of dying, pain, and fear of what is likely to happen to you. Although doctors are supposed to take care of sick and dying patients, you might be afraid your doctor will think you are "giving up" and give up on you, too. Know what you should expect from your doctor; choosing a doctor; Getting the most out of each visit with your doctor; dDress for success; Set the stage for a successful conversation; When you are hesitant to ask questions.
Tapestry of Support A description of how patients can create a support system for themselves, including a medical team, hospice team, clergy, social workers, family, friends, co-workers and others, and directs users to some of the many on-line resources available. No registration is required.
Telling your story - Handbook For Mortals - We are all storytellers. For most of our lives, we do just that -- tell stories about our day, or something that happened last year, or when we got married or had our first child. Dying is the end of this lifes story. People often find hope and comfort, and a sense of closure, by telling stories about their lives to others. You might ask a close family member, a trusted friend, a health care provider, or a counselor to listen to your story.
10 questions to consider in writing your life's story.
Therapy Options-The Healing Arts
From "On Our Own Terms" Moyers on Dying series. Click on Healing Arts: Healing depends on more than medication alone. Patients grappling with a serious illness also need treatment that addresses their psychological and emotional needs. That's where so-called "expressive" therapies, ranging from yoga to poetry readings, are gaining ground. In the past ten years, hospitals around the country have made increasing use of these therapies to improve patient mood and morale by unleashing creative energies. Links to several related websites.
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