Diagnosis of Terminal Illness

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Terminal Illness

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.

Diagnosis of Terminal Illness

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.

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  • 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.

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Helping Someone Who Has a Terminal Illness

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.

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  • 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.

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Pain Management

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.

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  • 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.

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Hospice and Palliative Care

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.

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  • 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.

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Speaking With Children About Terminal Illnesses

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.

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  • 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.

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For advice on talking to children about terminal illness ...
For helping a terminally ill child ...
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Terminal Illness Legal and Financial Issues

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.

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  • Government and association Web sites are often good sources for information regarding financial assistance that may be available for people with a terminal illness.

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Terminal Illness Support

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.

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  • 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.

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