Terminal Illness

What is a terminal illness?

By definition, a terminal illness is a condition expected to end in death. It means the disease you have is irreversible or incurable. In other words, terminal illness doesn’t go away.

Terminal conditions can get worse quickly. Or you might have a slow, progressing terminal illness where symptoms gradually worsen over a prolonged period of time.

Learning that you have a terminal illness can be earth-shattering. There’s no right or wrong way to respond to this news. You might feel sad, angry, fearful or relieved. You might feel totally numb. You might feel all of these things at once. However you feel is OK.

Whether you have a terminal illness or are caring for someone who does, it’s not always easy to talk about dying. But knowing what to expect can be empowering.

What are the most common terminal illnesses?

There’s no go-to list of terminal conditions. Some diseases are more likely to become terminal, but it varies from person to person.

Examples of conditions that can be terminal include:

• Advanced cancer.
• Alzheimer’s disease.
• Congestive heart failure.
• Kidney failure.
• Liver failure.
• Metastatic cancer.
• Multiple sclerosis.
• Parkinson’s disease.

If you have one of these conditions, it doesn’t automatically mean you’re terminally ill. To learn more about your condition and how it affects your life expectancy, talk to your healthcare provider.

What is the difference between a terminal illness and a chronic illness?

Terminal illness and chronic illness both refer to lifelong conditions. But people with chronic illnesses — like diabetes, asthma or autoimmune disorders — can potentially manage their disease with treatment. If you have a terminal illness, treatments can make you more comfortable, but they won’t prevent you from dying.

How long can a person with a terminal illness live?

It’s different for everyone. How long you’ll live depends on several factors like your disease, what kind of shape you’re in and what type of treatment you receive.

Your healthcare provider will do their best to predict how long you’ll live, but it can be hard to know for sure. People with terminal conditions might live for days, weeks, months or years. Your healthcare provider will only share this information with you if you want to know.

What are the symptoms of terminal illness?

Symptoms of terminal illness vary depending on the condition you have. But as you get closer to the end of life, you might experience:

• Confusion.
• Hallucinations.
• Difficulty swallowing.
• Fatigue.
• Loss of appetite.
• Peeing less than usual.
• Shortness of breath.
• Agitation.
• Urinary or bowel incontinence.

Let your healthcare provider know if you develop any new or worsening symptoms. There are medications and treatments that can help.

How is terminal illness treated?

The goal of treatment is to keep you comfortable rather than cure your condition. Your healthcare team will focus on palliative care, which includes:

• Improving your quality of life.
• Managing your symptoms.
• Supporting your emotional, mental and spiritual well-being.

Your palliative care team can also help with legal planning. This includes things like living wills, advance directives and power of attorney documents.

Receiving palliative care doesn’t always mean you have a terminal illness. Healthcare providers may recommend palliative care at any stage of a serious condition.

How will I know when it’s time for hospice care?

Many people with terminal illnesses qualify for hospice care. Hospice is specialized care focused on comfort. It can take place in your home, hospice house, nursing facility or hospital. The hospice team will help determine the best location for you. Medicare, Medicaid and most private insurance companies usually cover the costs. Typically, you’re eligible for hospice care if your life expectancy is six months or fewer.

There’s no hard-and-fast rule on when to start hospice. But your healthcare provider can help you decide when it’s time to transition to hospice care.

How can I take care of myself?

Having a terminal illness can take up a lot of headspace. It’s normal to develop anxiety and depression. It’s natural to grieve in a thousand different ways. Taking care of yourself is more important now than ever. Here are some ideas that might help:

• Acknowledge your reality. Learning that you have a terminal illness can be shocking. It might take time to fully wrap your head around it. Acknowledging that you’re dying means letting go of the future you envisioned — and there’s no easy way to do that. But honoring the truth of your situation can help you live fully in the present and make the most of each moment.
• Consider talking with a death doula. These healthcare providers offer mental and emotional support to you and your loved ones. They can coordinate visits, help with legal paperwork and provide companionship.
• Find someone to talk to (if that’s what you want). Talking to your loved ones can help you process the complicated emotions that come with a terminal illness — and it gives them the opportunity to support you. If you don’t feel like opening up just yet, that’s OK, too. You’ll know when it’s right. In the meantime, journaling or talking to a therapist can help you sort out your thoughts.
• Keep your routine. If you feel well enough, plan your days just like you always have. Keep a calendar of upcoming events. Make a conscious effort to keep doing the things you enjoy.
• Prioritize joy. Terminal illness has a way of forcing you into the present moment. Work this to your advantage by engaging in activities that bring you pleasure. This includes simple things like sipping on a cup of hot tea, reading a favorite book or listening to the birds singing in your garden.
• Try complementary therapies. Activities and treatments like acupuncture, reiki, yoga, massage and meditation can be incredibly beneficial. Be sure to ask your healthcare provider if there are any therapies you should avoid.

How can I care for someone with a terminal illness?

Anticipatory grief is grief you feel before a loss. If a loved one has a terminal illness, you know the feeling well. Thinking about death — and how and when it might happen — can be uncomfortable.

If it’s your first time losing someone this close, you might not know what to do or say. It’s normal to worry about these things. But caring for someone with a terminal illness isn’t as complicated as you might think. People who are dying want what we all want — to feel seen, heard and loved. Here are some ways you can help:

• Be a good listener. Hold space for them, even if you don’t know what to say. Listen to how they’re feeling and keep the lines of communication open. This is a scary time for both of you. Lean on each other.
• Be present. Your presence can be a great comfort to your loved one. Watch a movie together. Take them for a drive. Listen to a favorite album. Read to them. It’s not the activity that matters. It’s the fact that you’re there.
• Help proactively. People nearing the end of life might find it difficult to ask for help because they don’t want to be a burden. If you see a way to help, go ahead and do it. This might include running errands, making dinner or doing the laundry.
• Include them. Don’t assume that your loved one doesn’t want to join in activities because they have a terminal illness. Invite them to participate and let them decide.
• Offer truth and reassurance. Speak about their illness plainly and matter-of-factly. Be honest with them about their terminal diagnosis. Don’t pretend it isn’t happening. At the same time, you can offer hope. Ask them about their end-of-life wishes and include them in the planning. Let them know you’re there for them and you won’t abandon them.
• Respect their boundaries. Listen to their wants and needs. Offer help in the way that they need it, not in the way that you want to give it.