Understanding Terminal Illness, Hospice Care, and End-of-Life Planning

Receiving a terminal diagnosis, for yourself or someone you love, can leave you stunned and overwhelmed. There are lots of resources to help your family cope with the medical, emotional, caregiving, and planning challenges of a life-ending illness, but it’s not easy to track them down when you’re processing the news. Here’s what you need to know to better understand what a terminal diagnosis means, what your care options are, what your next planning steps are, and how to find support.

What is a terminal illness?

Terminal illness is a diagnosis no one wants, and it’s not always an easy diagnosis to understand. Because every patient’s overall health, disease type, and prognosis is different, there’s not a one-size-fits-all medical definition for a terminal illness.

In general, the term “terminal illness” applies to untreatable conditions that will likely result in death within six months, but there are exceptions. The UK-based Marie Curie hospice charity explains that, “depending on their condition and treatment, people may live with a terminal illness for days, weeks, months, or even years.”

During this time, the focus is on keeping patients comfortable, managing pain and other symptoms, planning for the end of life, and providing emotional support rather than trying to cure the underlying condition. Hospice services can be a tremendous help to patients and their families after a terminal illness diagnosis, and if the diagnosis meets certain criteria, patients may be eligible for Medicare or Medicaid coverage of their hospice care.

What is hospice care?

When a patient has a diagnosed terminal illness, hospice care offers a team-oriented approach to medical care, pain management, and emotional support that is tailored to the patient’s needs. The main focus of hospice care is not to cure a patient’s illness but provide quality care to make sure that they are comfortable. Hospice is usually administered in a person’s home but can be given in an inpatient facility like a nursing home. A hospice care team usually includes the primary doctor, the hospice doctor, nurses, social workers, clergymen, and sometimes volunteers. This team will take care of the patient and administer drugs to manage pain and symptoms, offer support about accepting the end of life, counsel the patient’s family about dying, and make sure the patient’s last wishes are met.

Common questions about hospice care

There are some questions and misconceptions that may prevent someone from considering entering into hospice care. For example:

Can a person return to curative treatment if they begin to improve? The answer is yes, a person can be discharged from hospice and return to curative treatment if their condition begins to improve. They can also return to curative treatment if they simply change their mind, even without significant improvement in condition.

Does hospice care cause a person to give up or cause death to come sooner? In many cases, discontinuing painful or uncomfortable curative treatment (when no improvement is being seen) can actually reduce the stress on a patient. Focusing on treating pain and symptoms of the disease, along with counseling options, can actually help improve a person’s quality of life overall and may even extend their longevity.

Can a person only use hospice services for six months? No. Even though a patient must be given the prognosis of six months or less to live for hospice care to be covered by most insurance companies or Medicare, a person can use hospice services for as long as they are needed.

What’s the difference between hospice and nursing home care?

The main difference between the two options is the main goal behind them:

• Hospice aims to make the process of dying more comfortable for those who have already accepted (and whose families have accepted) that it’s coming.
• A nursing home provides full-time trained healthcare staff to seniors who need a greater level of care than families can provide, and works toward the possibility of helping them get well enough to return home eventually.

The options aren’t mutually exclusive. It is possible to hire hospice to provide their services to a senior living in a nursing home. But while both are covered by Medicare, they’re rarely covered at the same time. You can usually only make use of both services if you can cover the cost of nursing home care yourself.

The Medicare definition of terminal illness and why it matters

The Medicare program defines a terminal illness as one “with a life expectancy of 6 months or less if the illness runs its normal course.” This definition matters because in order to qualify for Medicare coverage of hospice services, your doctor and a hospice doctor need to certify this diagnosis in writing. Terminally ill patients seeking Medicare benefits must also sign a statement opting in to hospice care and out of cure-focused treatments.

Medicaid coverage of hospice care has life-expectancy rules that vary by state. For example, the Centers for Medicare & Medicaid Services (CMS) notes that New York State provides Medicaid hospice coverage to eligible patients with a life expectancy of less than a year, while other some states use the 6-month Medicare standard for Medicaid hospice eligibility.

Who is eligible for hospice under Medicare?

If you have Medicare Part A, then you might be able to have your hospice care paid for partially or in full. You must also meet three other criteria:

• Your doctor must confirm that you have a terminal illness with a life expectancy of fewer than six months;
• You accept palliative care instead of medical care to cure your illness; and
• You sign a statement that says you have chosen hospice care instead of any other medical treatment care that Medicare covers for your illness.

It is important to note that only your doctor can confirm and certify that you have a terminal illness and sign off on hospice care. Make sure that you talk with your doctor to discuss all options about your illness so that you can make an informed decision about hospice care.

What hospice services will Medicare cover?

Under Medicare, you are allowed to get one hospice consultation with either a hospice director or hospice doctor. You will be able to discuss all your options when it comes to your illness, including pain management and symptoms. Medicare will cover this consultation even if you decide that you do not want hospice care. If you do decide that you would like hospice care, Medicare will cover all the costs of your hospice care as long as they are related to your terminal illness. You need to make sure the care you choose is from a Medicare-approved hospice program. You can call Medicare to find a hospice program near you that is approved.

What won’t Medicare cover in hospice?

There are a few things that Medicare won’t cover under hospice care. These include:

• Prescription drugs, unless they are for symptom control or pain relief
• Treatment to cure your illness
• Care from a provider that was not set up by your hospice team
• Room and board, unless your hospice team decides you need short in-patient care
• Care in an emergency room, inpatient facility, or ambulance unless it is arranged by hospice

All treatments that you had to try and cure or treat your illness before hospice care will also no longer be covered under Medicare.

Next steps after diagnosis of a terminal illness

If your doctor diagnoses you with a terminal illness, you have some decisions to make. You may want to seek a second opinion on the terminal diagnosis, or you may decide it’s time to look into hospice care options.

Your doctor may refer you to local hospice physician who can assess your care needs, certify you for Medicare or Medicaid coverage as described above, and help you transition to hospice care, which is usually provided at home. To help you find the right hospice for you, the American Hospice Foundation offers a checklist of questions to ask, including questions about Medicare certification, inpatient care options, and how the hospice team works with family and friends. You can also download and print a 4-page checklist from the National Hospice and Palliative Care Organization.

You’ll also need to start thinking and talking about what you want the end of life to look like and what kind of memorial you wish to have.

Talking about end of life care

There aren’t many topics harder to bring up than the prospect of death. Maybe that’s why at the end of life, many families have to make care decisions for loved ones without knowing what they would have wanted. Experts say it’s better to talk early and often about your wishes. Hospice workers and other resources can help your family talk about end-of-life care.

Journalist and commentator Ellen Goodman started The Conversation Project to help families with end-of-life care planning after caring for her aging mother. The group offers kits you can use to organize your own thoughts and share your wishes with your family. Another writer, 93-year old psychotherapist Margie Jenkins, author of “You Only Die Once: Preparing for the End of Life with Grace and Gusto,” offers detailed recommendations for families preparing for the end of a life.

Decide what you need to do before you die, for yourself and for your family after you’re gone. That can be anything from going through old keepsakes to repairing estranged relationships.

Get your legal and financial house in order. This is what most of us think of when we think about end-of-life planning, and it’s very important. Estate planning, advance directives for healthcare, and other documents will be your family’s road map during a stressful time.

Decide where cherished possessions will go. Jenkins and her husband arranged a home tour for their adult children to choose a few things they want to keep after their parents are gone.

Think about how you want to be remembered and perhaps write letters to the people you love.

Choose your own funeral home and decide whether you want a casket burial or cremation.

Plan your memorial. You get to decide the location, the ceremony (if any) and what kind of remembrance you want. Do you want a traditional church service? A wake and a family night out on the town? A gathering of the musicians you know to play and sing your favorite songs? The choices are up to you.

Also:

• Be patient with yourself and your loved ones as you talk things through, and expect to have many discussions.
• Talk with other family members, friends, counselors, or clergy to sort out your thoughts.
• Set disagreements aside during the early stages to keep communication open.
• Talk about how much information you’d like from doctors, how much care you want to receive and for how long, where you want to be at the end of your life, the weight you want family members’ wishes to have, your medical and personal privacy, and more.
• When you’re satisfied with your plan, see a family or eldercare attorney to get any legal paperwork you need.

The loss of a loved one is never easy, but proper planning can make it easier for those left behind to put one foot in front of the other, carry on, and enjoy the memories of the person they loved.

More terminal illness and hospice resources for patients and families

You can find more hospice information on Medicare’s How Hospice Works page and on the NHPCO’s Hospice FAQs page. The Mayo Clinic offers in-depth end of life information on its site, including a guide to providing emotional support for a loved one with a terminal illness, and GriefShare.org provides a search tool to find support groups across the US.

Your hospice will be able to recommend local support groups for living with terminal illness and grief support groups for loved ones. You can get information on hospice options in your area by calling our trained Senior Care Advisors at 1-800-805-3621.

Casey Kelly-Barton

Casey Kelly-Barton is an Austin-based freelance writer whose childhood was made awesome by her grandmothers, great-grandmother, great-aunts and -uncles, and their friends.