Patients living with a terminal illness, and those who care for them, are confronted with a profound and difficult situation. Questions about coping, living fruitful days, interacting with loved ones, and preparing for the inevitable will certainly arise. In this guide we'll help answer these questions by connecting you to advice and information from experts around the Web.
Although an illness may be terminal, there are active steps you can take toward monitoring your health and quality of life. Once diagnosed, educate yourself on your condition and on end-of-life issues. Knowledge is a huge asset, and there's much you can learn to prepare.
- Consumer health Web sites, like Mayo Clinic, InteliHealth, and HealthAtoZ, all have information on terminal illnesses, and should be some of the first stops in your search for information.
- The following sites are mostly for adults; however, if you have an older child who has been diagnosed with a terminal illness, you might judge the information on these sites as appropriate for him or her.
- For information on the specific disease afflicting you or a loved one, consult the corresponding findingDulcinea Guide for further information. If we don't have a guide covering your specific condition, the findingDulcinea Health Guide has information on researching health topics, and would be a great place to start.
has an interesting article on the importance of talking about end-of-life issues before any crisis occurs. Using real-life examples, various topics and ways of going about broaching the conversation are discussed. There's also a comprehensive glossary
with end-of-life terminology used by professionals.
Living Caring Working
is a Web site from Australia that aims to improve the quality of life for those with a terminal illness. Topics range from receiving a terminal diagnosis to discussing your needs. There's a PDF form that you can use to write down your emotional, physical, psychological, and cultural needs; the form may help you communicate with family and carers. Also included is advice on working while living with a terminal illness.
The BBC's Relationships portal
has extensive information for the person living with a terminal illness. Topics include the challenge of living with a terminal illness, the physical effects, coping styles, and much more.
, a comprehensive site devoted to those facing life-threatening illness and needing hospice care, provides this insightful article on living while you are dying. It touches on how to speak to your friends and family about your terminal illness, finding hope, and reaching out for support, among other topics.
provides this page on depression in patients with cancer, offering advice and insight that may be helpful for anyone battling a chronic or terminal disease. It reviews depression and anxiety, and how therapy may help in coping with this stage of life.
How a patient responds after being diagnosed with a terminal illness cannot be predicted. There are varying degrees of acceptance and denial, and as a friend of loved one, it's important not to push those suffering toward any emotional or spiritual conclusions. The sites in this section describe various ways you can help a friend or family member during this time and, just as important, how you can take care of yourself as caregiver.
- The Web is full of information on interacting with the terminally ill. Searches on health-specific (and general) search engines, using terms like "interacting with terminally ill," yield a plentitude of results. Try Healia.com and Zuula.com to start.
- Use the information on these sites as a starting point to aid your conversations with healthcare professionals.
The AGS Foundation for Health in Aging
has an informative section on seniors and dying at home. The authors discuss your role as a caregiver, how to be supportive, and when to seek professional help for yourself.
The University of Virginia Health System
's page, "Coping with Terminal Cancer," is also appropriate for other terminal illnesses. It reviews the concept of death, anticipatory grief, and how children and adolescents view death.
The World Health Organization
offers this 38-page PDF booklet for caregivers, called "Symptom Management and End of Life Care." Although it's meant for care of people who are dying of AIDS, the information is useful for many terminal illnesses. It covers prevention of virus and bacterial transmission, prevention of problems such as bedsores, what to do for coughing and nausea, how to assess pain, and how to take care of children who are about to lose a parent.
Family Caregiver Alliance
has an article on end-of-life choices, such as whether to use feeding tubes and ventilators. It takes a hard look at how one can make these difficult decisions and offers fact sheets for more guidance.
The BBC's Relationships portal
has a section on coping for the caregivers of people with terminal illnesses. It suggests offering to help with practical tasks, as well as how to be supportive, handle difficult conversations, and boost morale.
has an article on depression in caregivers of the terminally ill.
See the "Related News Articles" at the bottom for more information geared to caregivers.
provides this page on how to support a friend or relative who is dying with tips on how to visit someone who is terminally ill. HealthAtoZ also offers this article
on how good communication with healthcare professionals helps reduce the rate of depression among caregivers of terminally ill patients.
Family Caregiving 101
hosts this informative page on what you need to know as a caregiver. Issues like living wills, keeping detailed records of the patient's medical history (including allergies and medications), and how to deal with and speak with the healthcare team are covered.
's article called "Terminal illness: Interacting with a terminally ill loved one" is laid out in a question-and-answer format. The author, a chaplain with the Mayo Clinic, discusses the feelings of people who are dying and of those who love them.
helps caregivers understand the issues related to artificial nutrition and end-of-life decision making.
If you're suffering, there are ways to manage the painful symptoms of your illness. Although much of the information on end-of-life pain focuses on cancers, it's often applicable to other illnesses. The Web sites in this section offer resources for coping with and reducing your suffering.
- On any respectable health Web site you'll find a disclaimer reading something like this: "the information here is meant as a complement to, but not a substitute for, your doctor's advice." And although this reads like a warning, it's also a suggestion: use the information you find to become an active participant in the decisions relating to your healthcare.
- Consider looking at Web sites that offer alternative or holistic methods of pain control. While medications will likely be necessary to manage your pain, other methods such as relaxation techniques may help you gain better control.
The American Pain Foundation
's "Pain Information Library" has links to information for various pain conditions, medications, complementary and alternative medicine, pain facts and figures, and more. The site also offers a "Pain Resource Locator
" that enables people with pain, or their family and caregivers, to find local help.
The National Cancer Institute
has a section called "Understanding Cancer Pain." It points out that only you know how much pain you are experiencing, and explains how to communicate and measure it. The links along the left can help you navigate through the contents of the article.
offers this article on alternative pain control. It reviews relaxation techniques, biofeedback, imagery, massage, and more.
, published by Beth Israel Medical Center in New York, examines why it's important to treat pain, the different approaches to cancer pain relief, and a variety of methods used in pain treatment, including alternative and surgical therapies.
The World Health Organization
offers printable booklets for healthcare professionals that contain a lot of useful information for caregivers as well. This particular booklet is on palliative care and pain control for adolescents and adults with HIV and AIDS. This printout of chapter 8 of the book Pocket book of hospital care for children: Guidelines for the management of common illnesses with limited resources has palliative care and pain control information for children, starting on page 221
. Cancer Pain Release
, also for professionals but interesting reading for caregivers as well, is available in 31 languages.
Hospice and palliative care programs help alleviate suffering and prepare patients for the end of their lives. This section provides Web sites for learning about what these programs offer patients and the family members of those who are dying. You'll also find resources for locating hospice and palliative care providers in your area.
- If the resources we recommend here don't yield a hospice or palliative care service that suits your individual constraints, use a search engine. The health-specific search engines listed in the "Finding Health Information" section of the findingDulcinea Health Guide should be your first stops. After that, see what comes up using your favorite search engine.
- Not all services are represented on the Web with individual sites. But by beginning your search on the Web, you may be able to find contact information that can lead you to them.
discusses the difference between hospice and palliative care programs and reviews the goals of each program.
This Mayo Clinic portal
overviews what hospice is and how it works. It reviews in-hospital care as well as at-home care.
The Visiting Nurse Associations of America
provides a search function for finding a VNAA branch in your location. Enter your information in the search box or use the "Search By State" link for a clickable map of the United States.
The Canadian Virtual Hospice Web site
has portals for patients, friends, and family members, as well as professionals and volunteers. Available in both English and French, the information provided covers topics such as how to approach your own care, legal and financial issues, and spiritual care.
The difficulty of coping with a terminal illness is often exacerbated when children are involved. Whether your child is ill or simply needs to understand the illness of a loved one, you'll find resources here to help you communicate more effectively. The sites in this section explain how children see and conceptualize death, and provide age-appropriate communication tips to help you discuss the hard facts of life and death.
- Most children don't spend a great deal of time thinking about the future; they live in the present, for the here and now. This fundamental difference in their approach to existence can make it difficult for them to understand terminal illnesses. Sites that discuss child psychology can be useful for helping you generate an approach to the conversation.
For advice on talking to children about terminal illness ...
End-of-Life Care for Children
is an extremely well-done site that is directed at medical professionals but quite useful for parents as well. Included are video interviews with a doctor and nurse who regularly care for terminally ill children, as well as a parent who lost a child. The glossary alone is worth a visit to the site. Best of all, the contents of the Web site can be downloaded into a printable file.
This Baylor University page
is based on the book, Terminal Illness: A Guide to Nursing Care, by Charles Kemp. It discusses how children view death and dying, their developmental stages, how to talk to children about someone who is terminal, and how to support a grieving child.
For helping a terminally ill child ...
The Starlight Starbright Children's Foundation
helps children who are seriously ill and their families by providing entertainment and family activities to help them cope. Share your story with the Foundation or locate a local chapter or regional office in your area.
The Starlight Children's Foundation Canada
has a site available in both English and French. It provides a "Kids Activity Network" to help seriously ill children and their families engage in local entertainment activities.
The Make-A-Wish Foundation
grants wishes to children with life-threatening illnesses. Read "Wish Stories" for inspiration and hope, or visit the "Refer a Child" link to recommend your child for a wish fulfilled.
Unfortunately, in addition to the physical and emotional burdens of a terminal illness, there are practical matters that must be dealt with. This section provides you with Web sites discussing legal and financial considerations for people with terminal illnesses.
- Government and association Web sites are often good sources for information regarding financial assistance that may be available for people with a terminal illness.
The American Cancer Society
reviews different types of advanced care health directives. These are the wishes you may have about your care, and should provide in writing in case you can't speak for yourself when the time comes. The page reviews the living will, power of attorney, and other directives.
, the official U.S. government site for people with Medicare, provides links to information on Medicare, prescription drugs, enrollment, and more. An "FAQs" section covers 20 of the most commonly asked questions. The site is also available in Spanish.
Social Security Online
is the official Web site of the U.S. Social Security Administration and offers many links on disability and SSI, and applying for benefits. This information is also available in Spanish.
Support is imperative for helping patients and caregivers get through this difficult and challenging time. If you are housebound, the Internet can be the best way to connect with others who share your experience. In this section we'll show you how to find support through sites with online communities.
- When posting on message boards, always keep in mind that they're open forums and refrain from posting any sensitive, private, or personal information that you'd be uncomfortable having read by the general public.
- People you meet online may offer advice but always check with your doctor before making any major changes in your lifestyle or treatment. Different people have different needs.
The American Pain Foundation
provides support for people in pain through chat rooms, message boards, "Ask-the-Expert" boards, and a monthly newsletter. Also available is a crisis page
, which has a toll-free hotline for emergencies.
sells books about living with serious and terminal illnesses, for both adults and children. This section lists books such as A Time to Live for adults and Beyond the Rainbow for children and their caregivers.
is a program of the Starlight Starbright Children's Foundation, and seeks to help seriously ill teens cope with their pain, fear, and isolation by connecting with others online. The Web site features information to help children understand their condition, as well as discussion forums for teens to connect with other teens in similar circumstances.
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