Patient and Family Instructions
for the Aid-in-Dying Day
August 11, 2021
NOTE: The Academy recommends that patients obtain guidance in moving through the aid-in-dying process — from your doctor’s office, an aid-in-dying volunteer, nurse, or end-of-life doula, or an aid-in-dying support organization in your state. In particular, on the aid-in-dying day that guide can help you in working with hospice, mixing medications, and supporting your family on a very emotional day. For help in obtaining such guidance, please contact the Academy at [email protected].
Planning: Once you have completed the process and become eligible for medical aid in dying, ask your medical providers for continued guidance, planning, and monitoring about if or when to take the medications. Aid in dying can only proceed if the patient has:
- Capacity to make medical decision for oneself:
- Understands other options
- knows that taking aid in dying medications results in death
- can communicate this understanding
- The ability to self-administer the medications (swallow, or use a PEG tube or rectal catheter). Someone other than the patient, however, can legally prepare/mix the aid-in-dying medications, and bring them to the patient – as long as the patient is not assisted in actually taking the medications.
- The ability to physically absorb the medications. Patients with bowel obstructions and other stomach and intestinal issues cannot safely absorb aid-in-dying medications. If you think this may apply to you, talk with your doctor before taking aid-in-dying medications.
Your attending doctor or hospice can help guide you.
Prescription: Please be sure that your doctor has the most current prescribing information, as there are older and less effective versions of prescriptions that sometimes are mistakenly used. Please don’t hesitate to contact, or have your doctor contact the Academy ([email protected]) for further informationm, or refer her to our Pharmacology Information link https://www.acamaid.org/pharmacologyinfoupdates/.
Medication delivery: A pharmacist will call and arrange for payment and delivery of medications. We suggest you ask the pharmacy to hold the prescription until the week you plan to use it. This will keep these dangerous medications safely out of reach and prevent the disposal of medications and charges for them if they are not used.
Attendance: Having good support for yourself and your family or loved ones on the day of aid in dying is very important. Many hospices will allow their staff to be present before and after taking the medications. A nurse, social worker or chaplain at the time of aid in dying can be an essential source of comfort and experience. If your hospice or other organization will not provide someone to be there for the aid-in-dying day, please feel free to contact the Academy at [email protected] and we will work on finding a qualified person to be there for the death.
One week before:
- Notify your care providers – Let hospice and your attending doctor know that you are planning to take aid in dying medications, and when you plan to do this. It is especially important to notify your attending doctor promptly if you are having any difficulty with swallowing, any nausea or vomiting or significant constipation. These issues may need to be managed before you take aid-in-dying medications.
- Practice swallowing – Daily, practice swallowing 4 ounces (1/2 cup) of slightly thickened liquids (the consistency of “Ensure” or “Mylanta”) in two minutes, from a short glass cup (plastic can bind the medications). This practice can help you feel confident that you can swallow all the aid-in-dying medications within the required two minutes, so that you don’t fall asleep before you finish taking the entire dose.
- Bowel care – make sure your bowels are moving easily and regularly, at least every other day, even if you are eating very little. It is also recommended that you try to continue to eat at least small amounts of food 2-3 times a day. This ensures your digestive tract continues to move and can easily absorb the aid in dying medications.
- Medications – Continue all of your usual medications unless you receive specific other instructions.
- Finalize plans for your remains – let you family, or loved ones, and providers know what you want done with your remains. You should contact a local mortuary and make your arrangements. Your death certificate will cite your underlying disease as the cause of your death and will make no mention of medical aid in dying. The death certificate will be available from the mortuary or institution after being signed by your doctor.
24-hours before taking aid-in-dying medications:
- Continue all of your usual medications unless you’ve received specific other instructions.
- Starting after dinner the night before you take aid-in-dying medications:
- Do not eat any solid foods.
- Water and other clear, non-fatty fluids are fine, but don’t take in large volumes of liquid.
- Continue to not eat any solid foods on the day of aid in dying. No breakfast or lunch on that day, only clear liquids.
- NOTE: The best time to begin taking the medications is about 11 AM. That provides the patient with some time with their family, and assures that death will be achieved during the daytime while family and others are not exhausted, and hospices and funeral homes are readily available.
On the day of aid in dying: (Please also see the Academy video — Video Enactment of Aid in Dying at the Bedside
Medication Preparations: (Please also see the Academy video — Instructions for Mixing Aid-in-Dying Medications.)
- Choose a secure, well lit, uncluttered surface to mix the medications. Any people present should be encouraged to stay away from the area while preparations are in process. These are dangerous medications. Pets should be secured, and children should be closely supervised.
- Cover the surface with a layer of paper towel. Medical gloves may be helpful but are not required. Have all supplies ready, including a small bottle of apple juice (not the unfiltered variety), a short glass cup, and a sealed plastic container or bag for garbage.
- Before opening the bottle, gently tap the bottom on the counter so that the powder settles away from the lid.
- Open the bottle, away from your face, and slowly fill it roughly halfway with clear apple juice. Put the lid back on the bottle and shake vigorously until all the powder appears dissolved. Finally, fill the bottle up to the neck, being careful not to overfill and spill, and secure the lid. Again, shake the bottle vigorously to suspend all the powder particles.
- Once the medication has been mixed, it can be brought to the patient’s bedside in the glass bottle. Shake the capped bottle thoroughly one more time, then carefully pour the liquid suspension into the short glass cup just before self-ingestion. (Be sure the patient is settled comfortably in bed or a safe chair before they take the aid-in-dying medications. It is not safe for them to walk to another location once they have swallowed these medicines.)
- After the ingestion: Promptly and thoroughly clean the used short glass cup and the bottles. Dispose of the emptied and cleaned bottles in a sealed plastic bag or container.
Procedure for taking aid-in-dying medications:
Step 1. To prevent nausea and vomiting, take anti-nausea medications: (most commonly ondansetron/Zofran and metoclopramide/Reglan), at least 30 to 60 minutes before the actual aid-in-dying medications. These medications do not cause sedation, and their anti-nausea effects last 8-12hrs.
Step 2. Wait at least 30 minutes after anti-nausea medications, and take the final aid-in-dying medications, sitting somewhat upright if possible. These final medications are bitter and can cause a burning sensation and mild coughing. This thoroughly resolves within the few minutes it takes to fall asleep. Small sips of clear juice, small spoonfuls of (fat free) sorbet or a (fat free) popsicle can significantly help any burning sensation, and change the bitter taste in the patient’s mouth to a sweet one.
These medications quickly cause deep sleep, within 3 to 10 minutes, soon followed by coma, and then respiratory suppression and death. While in a coma but still breathing, the patient has no conscious awareness and is not suffering. It is very common for patients to have sudden deep, gasping breaths before dying. These are reflexes and the patient does not feel discomfort from these breaths, but the family should be prepared so as not to be surprised or concerned. Snoring and gurgling sounds are also extremely common and are of no concern. If breathing does not stop completely and lead to death in the first hour, then the digitalis and amitriptyline will soon stop the heart, usually within the next 2 to 5 hours. If needed, a call to your hospice or other provider can be very reassuring.
- Families should call hospice and/or the mortuary to notify them of the death. If the patient is not cared for by hospice, the attending physician who wrote the prescription should be contacted.
- Mortuaries commonly come within 30 to 90 minutes to collect remains, and will need basic information (name, address, birth date, weight, height, stairs into the home, name of hospice). (For other variations in “home funerals” and alternative burial/cremation plans, please check your local and state resources and laws.)
- Hospices offer a nursing visit for support after a loved one dies, to instruct about disposal of medications. Hospices also offer ongoing bereavement support of many types, free of charge.
~ Please promptly call your hospice or your attending/prescribing provider with any concerns or questions.