Caregiver Tips: Part 7 – Planning Ahead for Terminal Patients


It’s never easy to make plans for dying, but it’s a fact of life that we will all die someday, and it could be in the blink of an eye for any of us. Here are some tips for things to take care of, especially if the patient has a terminal diagnosis:

  • Make sure the patient has a living will (directive to physicians and family), an updated last will and testament, a financial power of attorney, and a medical power of attorney with a separate HIPAA release authority. You will need the separate HIPAA release authority to obtain the medical records if the patient is not available to pick them up. (Make sure your own legal documents are current, too.)

  • Ask your attorney about the difference between a durable power of attorney and a springing power of attorney. It’s an important difference to be aware of.

  • Make sure you know where the legal documents are located and how to gain access if they are locked up. A safety deposit box at a bank is not a good place to keep these items, as the bank could be closed when you need access. If your name is not on the lock box account with the patient’s name, you may need a court order to open the lock box, even if you have the key.

  • Determine what “durable medical equipment” (DME) companies are in your network. Read patient reviews of them on the internet and decide ahead of time what company you want to use.

  • Be at least one step ahead of the patient’s needs, if possible. Borrow a cane, a walker, a portable wheelchair, a shower chair, etc., until you can get one of your own. The patient could be fine one day and then the next day desperately need the equipment.

  • If a patient refuses to consider using supplemental oxygen at home, ask the patient’s nurse to administer a test to see if supplemental oxygen is needed. Let the nurse be the one to make the determination.

  • If a patient’s condition is terminal, discuss funeral plans and make arrangements before the need arises. As difficult as it can be, it is a gift of love for the surviving family members knowing they don’t have to make the decisions and guess the patient’s wishes. With the future taken care of, you can then concentrate on the present.

  • If the patient’s condition is terminal, determine what hospice care is in your insurance network and interview them over the phone or in person to find out which might be the best fit for your situation. It’s best to do this long before the need arises when you’re not operating in a crisis mode. Carry their contact information with you to doctor and hospital visits.

  • The patient has the final decision regarding treatment; you must respect that decision.

  • If the patient is in a critical health situation, ask if he/she wants to be resuscitated if the situation warrants. If the answer is “No,” print a copy of an “Out-of-Hospital Do-Not-Resuscitate Form” that you can obtain on the internet and have the patient sign it in front of two witnesses who are unrelated to the patient. Find a form that is applicable to the state in which the patient lives. The form should also be signed by the patient’s attending physician. Put it on the refrigerator in the home (which is where emergency medical personnel look for it). Also carry a copy of it with you when you are with the patient.

  • Have the patient fill out an “In Hospital Do Not Resuscitate Form.” The other form is only good if you are outside a hospital setting. Make sure the patient’s doctors are aware of this DNR order.

  • Keep a copy of the medical power of attorney and directive to physicians and family with you at the hospital in case of emergency. Know what the patient’s wishes are for end-of-life treatment. Does the patient want to be intubated, receive artificially administered nutrition and hydration, intravenous antibiotics, or be kept on life support? The specific requests need to be included on the living will.

  • Make sure you know the patient’s wishes about being an organ donor. (Organ donation may not be an option for certain patients.)

  • Find out if the patient wants an autopsy so you can abide by his/her last wishes without having to make that decision on your own.