You may feel overwhelmed and not know what to do first if you or someone you love has just been told they have a serious illness or experienced a healthcare crisis. We can help you sort things out and deal with whatever is in front of you. Below are some common situations and questions and suggestions for how to handle them.
You are the patient and have just been diagnosed with a serious illness or condition
Stop for a moment and take the information in if you can. There are things to be done but taking some time to ‘just be’ with the news will help you make good care choices.
If possible, take time to learn about your condition and the treatments for it. There are often several choices of treatment and the more you know about their benefits and risks the better decisions you can make for yourself. The Conversation Project’s Guide to Serious Illness Conversations can help you think and get ready to talk about the care you want for your serious illness.
How do you make your wishes known?
If you already have a written advance directive, POLST or DNR, whether digital or on paper, make sure it is available to the person(s) you appointed to speak for you, your inner circle, your physicians, and the hospital if appropriate.
If you do not have any kind of an advance directive and it is urgent to specify what you want and don’t want, you can:
- Make a self-video stating your wishes, save it on your own phone and send it to your inner circle, to your doctor, and to anyone that may be accompanying you.
- Tell your inner circle what you want, tell your physician what you want and who may speak for you if you can’t speak for yourself.
- Even a hand-written statement, signed and dated by you expressing your wishes will be helpful in guiding those around you.
Once the crisis has passed, make an advance directive which includes appointing persons to speak for you and stating your wishes.
What Happens If You Can’t Speak for Yourself and You Have Not Made Your Wishes Known?
Some states specify by law who is appointed to speak for a person that cannot speak for themselves and have not left any instructions; others are silent. Go to your state to find out what applies to you; you will also find a link to a healthcare power of attorney that is valid in all but 5 states. While both doctors and the people that care for you will do their best, you are far more likely to get the treatment you want, and not get the treatment you don’t want, if you speak up while you are able to speak up.
What Other Things Should You Know?
It is useful to understand your rights and to know who pays for hospice or who pays for palliative care.
As time permits, learn all you can about your condition so that you will better be able to know how it will affect your life and the choices you may be faced with. We have suggestions that may help in speaking with your doctor.
Consider making instructions for how you want to handle your finances, including appointing someone to manage them if you cannot. Also, share your usernames and passwords for any important online sites with a trusted person.
You Are Not the Patient, But You Want and Need to Help
It is most important to know what the patient wants and to be empowered to speak on their behalf if necessary. The best thing you can do initially is to listen—allow the patient to express their emotions. You can provide a safe place for them. You will need to manage your own emotions so you can keep the focus on the patient, not you. We have suggestions on how to speak with them about their wishes.
You can help the patient make an advance directive or even a video if there is no time.
Sometimes it is difficult to have conversations about serious illness and wishes for future care, no matter how much we care for someone. In fact, sometimes the more we care, the more difficult it can feel. We have some suggestions on how to make the conversation easier.
You may also begin to learn more about preparing and getting organized for giving care and what your rights are in this situation.