Things to Consider When First Diagnosed with a Terminal Illness

You’ve been diagnosed with a terminal illness. I am very sorry. There is no right or wrong way to handle this experience. Time seems to stand still when you first hear the diagnosis. Everyone handles it differently. Some people push it away, some cry, some are angry; some are silent, some get scared, and some just plow full-steam ahead. Even when you have some idea that it’s coming, the words when spoken are devastating and horrible.

Give yourself some time to absorb the diagnosis. Allow yourself to feel your feelings as they come up. It might feel very strange to watch the world going on and see people doing everyday things while your world has seemed to stop. Your feelings will be a rollercoaster ride of ups and downs.


What exactly does terminal illness mean?
A disease or a condition that cannot be cured AND is likely to lead to death is called a terminal or life-limiting illness. Having a terminal illness doesn’t mean you cannot live a full life.

What is palliative care?
If you have a life-limiting illness you can receive palliative treatment. It is support for you and your loved ones. (Sometimes it is known as Supportive Care.) Palliative care is wonderful because it is there to improve your quality of life. This treatment manages your symptoms and your pain and keeps you active.

You can receive palliative care at any stage during your illness. Being on palliative care doesn’t mean you are going to die soon. You could be on and benefit from palliative care for years. You can still see your doctors and specialists alongside palliative care.

You can be on palliative care and still have chemotherapy and radiation therapy.
Please make sure you talk with your medical provider about your options and don’t be afraid of the words palliative care or hospice care. They are both very beautiful and helpful programs.

What is hospice?
Hospice is end-of-life care when death is near. Hospice is a very beautiful thing because the goal is to make you as comfortable as possible, manage your symptoms and your pain, and you and your loved ones will get emotional support. Hospice isn’t a place you go to for treatment—you can have hospice in your home, a hospice facility, or a nursing home.*

Usually, hospice means your treatment will go from trying to cure your illness to making you comfortable in the last days or months of your life.

There are a few things you might want to consider:
1. Who should you tell?
That is completely up to you and should be considered carefully. Generally, people are going to ask questions about what is happening. These might not be things you feel comfortable answering at first while you are still in shock. Never feel any kind of pressure to tell people or to tell people everything (or more than you are comfortable telling them.)

You may want to tell people but you feel it’s too hard for you to do it yourself. You might want to consider a trusted friend or family member to get the news out to those you want to know. This might be less stress on you. You could also have your doctor explain it to your close family members.

2. How should I prepare?
Advanced healthcare directives, legal issues, talking to a doula, talking to your doctor. All of these are pretty essential.

Advanced directives are legal documents that state a person’s wishes regarding the medical care they want or do not want if they are no longer able to make their own decisions. They include a living will, power of attorney, a health care proxy, and a DNR (do not resuscitate) order. This only is in effect if your heart stops and you are no longer breathing.) It is critical to help you plan ahead medically. They are how your wishes are followed if you are unable to communicate them. They do not apply to financial matters.

Get your banking in order. Add beneficiaries or make sure they are current.

Contact an End-of-Life or a Death Doula (you are actually in the right spot for that right now!) Doulas are becoming more common, so check your local area for a Doula near you! A doula’s work will complement hospice.

Get a notebook and keep it handy. Write down your questions, concerns, and thoughts that you would like to discuss with your doctor or medical team.

3. How can I enhance the quality of the remainder of my life?
I believe the first way to do this is by seeking palliative care and fully understanding what is going to happen to you during your illness, treatment, and the dying process. If you know what is possible or probable you will know what to expect and you will not be surprised by bad news.

Never be afraid to tell your doctor, or your medical team, anything. Never be afraid to ask questions. Remember, there are NO stupid questions! Be honest with your team about your pain and your concerns.

Try to find a creative outlet for yourself, call people (they might be waiting for you to call because they are unsure of what to say), and reach out to your social worker when you need to.

Eat as well as you are able to and really make a good effort to do so. Try to keep some sort of normal routine, and try to be physically active even if it is just taking a walk every day.

Your care plan will not only include medical treatments but will offer other things for your well-being such as art or music therapy, and emotional or physical therapy. These are all good for you.

Spend time with people you want to and don’t worry much about the people you don’t want to spend time with. The object is to be as stress-free as possible.
Finish projects, go to the park and just be in nature.

4. Think about “time”
Do the things you’ve always wanted to do if you can. Learn something that you’ve always wanted to learn. Try to heal old wounds and mend fences—or burn bridges, whatever makes YOU happy. Think about a legacy project.

5. Ask yourself what is really important and what you want in your life going forward
You have some time to cross some things off of your bucket list, say goodbyes, and heal conflicts. You will have an incentive to let go of the things you no longer need. (Both physical objects as well as relationships.) Spend your time how YOU want to spend your time and make no apologies for that.

6. Updating people
A lot of times with a terminal illness there are a lot of doctor appointments and tests and things. It might seem impossible to update everyone you want to update and it might be difficult to keep sending updates over and over or even remember who you sent them to in the first place. In order to avoid missing anyone on your update list, you might want to consider a social media update to your family and friends (not public.) There are also websites you can set up that are completely private and only able to be accessed by those that you allow. They will be able to interact with messages of support and read updates. One such charity that offers free private sites is CaringBridge.

7. Don’t be shy about asking people for help!
You might feel weird or apprehensive about asking people to help you out a little when you are going through treatments. Don’t feel that way! People want to help because they feel helpless, so walking your dog or running out to the store for you, giving you a ride to an appointment, or even coming over to help with housework—will actually be beneficial to both of you!

While being told you have a terminal illness is extremely sad and challenging, it is also news that comes bearing gifts. Gifts that had you not known in advance that you were going to die, you might not have made the time or the effort to do these things.

*According to the National Center of Health Statistics, 1% of the U.S. population (about 2.5 million people) die yearly. Approximately 60% die in hospitals, 25% in health-related facilities, and only 15% at home (with or without hospice service.)