Stephen Connor, PhD, is the executive director of the Worldwide Hospice Palliative Care Alliance (WHPCA). He has worked in the hospice/palliative care movement since 1975, including spending 10 years as the vice president of the National Hospice and Palliative Care Organization. In addition to being a hospice and association executive, he is a researcher and educator and is licensed as a clinical psychologist. Dr. Connor has over 175 peer-reviewed publications and is the author/editor of 6 books on palliative care. You can follow Dr. Connor on Twitter.
When someone receives a diagnosis of a serious illness such as cancer, their journey with the illness can last from a couple of months to many years. That journey includes the person’s whole family and other loved ones who are part of their life.
When someone is facing an advanced cancer diagnosis, their health care team may talk with them and their family about hospice care, a type of care that helps prevent or relieve cancer symptoms. Hospice care may be recommended when a cure is not likely or when someone is in the last months of life to help them live the rest of their life in as much comfort as possible. Hospice care focuses on quality of life, on the wishes of the patient and their family, and on easing distress at the end of life and the months leading up to death.
Deciding to receive hospice care is a very personal decision. If you choose to use hospice care, it typically means that, on some level, you and your family are aware that treatment to cure the cancer is no longer likely to be effective and that death is in the near future.
Misconceptions about hospice care
Most people have misconceptions about hospice care. People often believe that going into hospice care means they will be going to a building where they will eventually die. The truth is that hospice care in the United States is provided primarily in the place people call home, whether that is a personal residence, a nursing home, an assisted living facility, or another setting. The majority of the days a person spends in hospice care in the United States are actually spent in their home.
The second misconception is that if you go into hospice care, you might not live as long. But a universal goal of hospice care is to “neither hasten nor prolong the dying process.” In fact, a growing body of research indicates that some people in hospice care live longer than those who do not receive hospice care or palliative care.
The benefits of hospice care during advanced cancer
Hospice care has many benefits for people with advanced cancer and their families. The following benefits are available through most hospice care programs:
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Home visitations by a team of health care professionals and volunteers, including registered and vocational nurses, doctors, social workers, home health aides, chaplains, and therapists, such as nutritional, physical, occupational, or speech therapists
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Short-term inpatient care at a hospice care facility for acute conditions that can’t be managed at home, such as management of severe pain or other symptoms
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Respite care, which provides short-term relief to caregivers
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Continuous home care for short-term crises that would otherwise require hospitalization
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All medications, medical supplies, and medical equipment related to your cancer
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24-hour access to the hospice care team by phone or visit if needed
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Bereavement support as needed for your family for up to 12 months after the death
You can talk with your health care team about whether hospice care might be right for you or your loved one.
Qualifying for hospice care
To qualify for hospice care, you need to have an illness that is terminal with a prognosis of living less than 6 months, if the disease were to run its normal course. This prognosis must be certified by 2 physicians, which will usually be your doctor and the hospice program’s medical director. You can continue to receive hospice care for longer than 6 months if your doctors still believe that your prognosis is less than 6 months at that time.
While under hospice care, you will usually not be allowed to receive “curative care” covered by your health insurer. This means that you will not be able to receive treatments meant to cure the cancer. However, you can sign out of hospice care at any time to receive these treatments. You can also sign back into hospice care after receiving the treatment if you choose.
In the United States, hospice care is often covered by health insurance, including for people receiving Medicare and Medicaid. You can talk with your health care team or health insurance provider about whether you or your loved one meet the qualifications needed for hospice care.
Choosing a hospice care program during advanced cancer
There are more than 5,000 licensed, Medicare-certified hospice service providers in the United States. Almost every community has a hospice provider, so you or your loved one should be able to find those that are available in your area. Most people learn about hospice care options from their doctor, who can make a referral. However, if you think you need hospice care, you can start a referral yourself, bearing in mind that one of your doctors and the hospice medical director will have to approve your admission.
When you are referred to hospice, a member of the hospice care team will come to see you in the hospital or at home. They will do an assessment and will report to the doctors what your needs are and why you may qualify. The doctors will make a final determination, and the team will work together to make a comprehensive plan for your care. Once approved, hospice care services will then start based on your needs, which may change over time if your needs increase.
There are several things you should consider when choosing a hospice care program, as there may be multiple programs in your area to choose from. Some questions you can consider asking hospice care providers include:
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What services do you provide?
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What kind of support is available to me and my family?
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What roles will my personal doctor and the hospice doctor play?
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How will you work to keep me or my loved one comfortable?
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How are services provided after hours?
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How and where does this hospice program provide short-term inpatient care?
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Which nursing homes or long-term care facilities does this hospice program work with?
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How long does it typically take this hospice program to enroll someone once the request for services is made?
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Can I or my loved one receive cancer treatment to relieve certain side effects, such as radiation therapy to treat pain?
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Has this hospice program been accredited by the Joint Commission or the Community Health Accreditation Program?
You can find and compare different hospice programs in your community on the U.S. government’s Medicare.gov website.
The author has no relationships relevant to this content to disclose.
