Life with AIDS can change as the disease progresses. Different stages of the disease pose different challenges and require different types of medical care, support services, and planning.
According to the CDC, there are approximately 1.2 million people in the U.S. living with HIV. Understanding of the disease and how to care for those who have it has all evolved over the past 20 years.
As you or someone you know progresses to late-stage AIDS, it’s important to reassess the current medical care and support to see if additional services could be helpful.
Here are some things to consider as your condition changes.
Ongoing Medical Support
AIDS treatment, including antiretroviral (ART) medicines, is always recommended for people with HIV or AIDS to help keep the disease from progressing and the immune system as strong as possible. Whether you were diagnosed with HIV early on or in later stages of the disease, it’s important to talk to your doctor about treatment options.
Even in late stage, ART can be valuable, and in the absence of an incurable cancer, AIDS should not be considered a terminal disease. You should see your doctor regularly to have the levels of HIV in your blood checked and to monitor the strength of your immune system.
AIDS can weaken your immune system, making you more likely to catch other illnesses or develop other diseases and cancers. With regular checkups, your doctor can monitor your overall health, symptoms, and other health conditions.
Talking With Loved Ones
Living with a chronic and incurable disease can be difficult for both you and your loved ones, especially as the disease progresses.
Despite the availability of HIV drugs, some HIV-infected persons will progress to AIDS for various reasons such as failure to be diagnosed, to go on treatment or to stay on treatment, or because they fail treatment.
Whatever your situation, it is important to involve loved ones.
Talk about your goals, priorities, and preferences for end-of-life care with your caregivers. Some people want to do whatever is necessary to prolong their life for as long as possible, while others may want to minimize treatment, manage symptoms, and focus on the quality of life. Your caregivers and medical team need to know what’s most important to you.
Be sure to have the conversation again if your feelings change or as the disease progresses.
Palliative Care
Palliative care isn’t solely for end of life. People living with chronic, incurable, and complex conditions can also benefit from it. It focuses on reducing and limiting suffering, managing care, and maximizing quality of life. This type of care can help patients at all stages of AIDS.
Palliative care doctors, nurses, psychologists, and specialists can:
- Make sure you fully understand your illness
- Assess and help manage symptoms (including pain, depression, fatigue, and insomnia)
- Provide counseling and support for you and your loved ones
- Help establish goals of care
- Collaborate care with all of your providers, including those monitoring other medical conditions and mental health or psychological needs
- Assist with end-of-life planning
They help to maximize your quality of life and update care needs and goals as the disease progresses.
You can still receive treatment while getting palliative care. Palliative care is used in addition to current medical care and treatments.
Your doctor or local health center can refer you to local palliative care providers.
Hospice Care
While palliative care focuses on ways to improve your quality of life, hospice care helps families prepare for the dying process. In the United States, hospice care is provided for people who have about 6 months or less to live.
During hospice care, you, your family, and doctors can discuss whether or not you should continue treatment. If you do get better and your health improves, you can be taken off hospice care.
Hospice teams will again collaborate with your doctors and caregivers to ensure your wishes are carried out in regard to treatment. They will also work with the palliative care team to continue symptom management to keep you comfortable and help you make the most of your remaining time.
