As a registered nurse (Ph.D., RN), with over 30 years nursing experience, mostly in critical care, intensive care, and coronary care, I have seen the difficulty that end of life decisions create. Huge problems occur within the family when no one has ever discussed what they would want to be done in the event of a life-threatening illness or injury. As a Parish Nurse, I learned about Jim Towey’s tool called, Five Wishes.
Five Wishes is a document that helps families discuss what they would want to be done in the event that they are ill or injured and cannot speak for themselves or make decisions for themselves. For example, you are in a car accident and in a coma does your family know what your wishes are? Do they know who you want to speak on your behalf? It gets very complicated in a stressful situation to work with families who do not agree on what is to be done. I have been in the middle of resuscitation and had a family member run in yelling, “Stop! She didn’t want to be resuscitated.” yet, another family member had said she was a full resuscitation. This leaves the healthcare team at a loss of what to do. I have been told that a Mother wanted to be on life support to keep her breathing by the eldest son. When the youngest daughter arrived she started fighting with her brother yelling and screaming that she didn’t want her mother “kept alive”.
My philosophy has always been – it’s not about what I want. It’s about what the person who is ill or injured wants. This makes the decision making so much simpler. By knowing what the ill or injured person wants doing and then respecting their wishes the decision isn’t really up to me, the daughter, the sister, the caregiver so it’s clearer what the decisions are since they have already been specified.
Five Wishes has you share what your wishes are. Below is a brief summary of each of the five wishes. There is a lot to think about and the tool has great explanations and helps ease the discussion and the decision making.
Wish One: Who do you want to make health care decision for you when you cannot make them for yourself? Name three people you would want to speak for you. In Colorado, they must be 21 years of age or older. Other states are 18 years of age and older. The Five Wishes document also tells you who should not be your health care agent. For example, your health care provider (doctor, nurse practitioner) should not be your health care agent.
Wish Two: What kind of medical treatment do you want or not want? Do you want to be on a breathing machine? Do you want to have dialysis? Do you want a feeding tube? Do you want to have intravenous (IV) fluids? The Five Wishes document reviews scenarios such as what do you want to be done when you are close to death when there is permanent or severe brain damage or you are in a coma and you are not expected to get any better? What do you want to be done if you are in another condition such as end-stage kidney disease or end-stage heart disease or are dying of cancer?
Wish Three: How comfortable do you want to be? Do you want to be totally pain-free and then due to the medication be drowsy and not know you have visitors? Or would you like to be alert when you have visitors yet not in extreme pain? Do you want your lips kept moist? Do you want music played or will the constant noise irritate you? Do you want religious readings to read aloud at your bedside?
Wish Four: How do you want to be treated? Do you want your handheld? Do you want people to be at your bedside? Do you want members of your religious affiliation to come and visit? Do you want to die at home?
Wish Five: What do you want your loved ones to know? Is there something you need to ask for forgiveness for? Or is there someone you need to forgive? Do you have specific thoughts about your funeral service? Do you want to be cremated or buried? Do you have a specific place where you want your body or your remains to be placed upon your death? Do you have a favorite song or scripture that you would like at your service?
Once you have completed the document you need to have your signature witnessed by two individuals. In some states, the form needs to be notarized. Then the document should be shared with your health care agent, your health care provider and your family members. If you are admitted to the hospital or long term care facility you should take the document with you and share it with the staff. There is also a wallet card that can be filled out with your signature and your health care agent’s name, your primary care physician’s name and where your Five Wishes document is located. This wallet card is extremely helpful in the event of an emergency.
There is a lot to consider. The Five Wishes document helps you sort out your wishes. At your next family gathering such as an upcoming holiday, it’s a great time to begin this discussion. It’s so much easier to do when everyone is together and can get on the same page. Waiting until there is an emergency doesn’t work well as your emotions will be involved. During a crisis, your own personal thoughts and wishes may get in the way of what the ill or critically injured person wanted.
I hope you will look into this with your family and get everyone’s wishes out in the open. Even young and healthy family members should be encouraged to complete a Five Wishes document. Please comment on your experiences and share how this document has helped you or a family member. It has helped me as a Registered Nurse and it has helped me as a daughter. I hope it will help you.