Starleaf was a joy-filled person and it bubbled out during the VSED process. Many of the preparations we made turned out to be over-cautious and a number turned out not to be needed. However, there were also a number of areas that could have been better handled (as Monica puts it: the next wife of Ron’s who decides on a VSED, we’re going to do things differently!) Here are our comments, suggestions and a plan.
Scheduling – Starleaf wanted to wait until her 80th birthday to start the VSED process. After reviewing the www.phyllisshacter.com website comments, Ron and Monica set up a schedule that allowed for the birthday, one following “normal” day, then three days of reduced food intake with the full food and water fast starting on the fifth day after her birthday.
However, the palliative care specialist subsequently set up a Parkinson’s drug tapering schedule that started a week before her birthday. This caused her birthday (and the preceding week) to be more painful and less enjoyable because of increased pain and more arm shaking (her primary obvious Parkinson’s symptom).
In retrospect, we should have gotten input about possible drug tapering before we set up the schedule. Then the tapering could have started after her birthday with a subsequent delay in the start of the full fasting.
Palliative Care Engagement – The palliative care specialist set up the drug tapering to start two weeks before full fasting began. The specialist also set the start of palliative care engagement to coincide with the start of full fasting. That meant Starleaf was on drug tapering for two weeks before having an on-call nurse to discuss how she was handling the reduced drugs.
Since the first taper level (of four total steps) caused increased problems for Starleaf and she was not able to get feedback from the palliative care personnel, she did not continue the drug tapering and was still at the first taper level when full fasting began. This complicated the VSED drug administration since the drug was in capsule form and we had to administer it with applesauce (not all bad since Starleaf liked the applesauce as a morphine chaser).
Starting palliative care engagement two weeks before “necessary” would have created an extra expense but it was certainly within our budget. Perhaps the palliative care specialist was trying to save us money by not engaging early but it feels like it was false economy in this case.
Drug Levels – Ron and Monica provided all the morphine doses (and accompanying lorazepam). As novices in the world of morphine administration, they had no feel for altering/changing the dosage levels and worried about overdosing. Starleaf had told them that she preferred comfort over consciousness once she was in bad shape from the fasting. However, day 13 of the fast turned out to be an obviously uncomfortable one until an experienced caregiver told them to contact hospice and up the morphine level.
The comfort versus consciousness preference should have been discussed with hospice before the process began. Again, in retrospect, we should have set a guideline like: if the patient is in a semi-conscious state and is not sleeping or is constantly restless/uncomfortable between morphine doses, then up the dosage until the patient can sleep.
Bathing – once Starleaf was confined to the hospital bed, the most wonderful things that happened to her were the full-body baths provided by a hospice specialist. Because of the dehydration involved, we suspect the full body baths would be soothing for virtually all VSED patients. Make sure you put bathing on your to-do list for consideration. (In retrospect, we would have been happy for Starleaf to have received two of these each day, morning and evening!)
Plan for a VSED
This plan is presented in three stages. The individual elements in each stage do not have to be in the order listed but should be handled before going to the next stage.
Also, this section is expected to be under constant revision as new thoughts and ideas are added. Your input is welcome!
Stage 1 – Deciding on a VSED and Determining a Schedule
a. Contact Primary Physician – normally, she or he will provide the referral to hospice.
b. Contact Compassion and Choices – they can provide information and assistance with the available resources in your particular area.
c. Contact Hospice – determine their support, equipment and supplies to be provided, and the timing of their start.
d. Determine any drug tapering
Stage 2 – Getting Ready
a. Set a date – allow for time to tell your loved ones how much you have appreciated them and time for your loved ones to reciprocate.
b. Notify loved ones
c. Acquire/arrange for supplies and equipment
d. Get finances, will and household in order
e. Distribute mementos
f. Arrange for caregivers during the fast period
g. Plan for activities during the fast: music, DVD’s to watch, photos to review, etc.
h. Do some things to bring joy!
Stage 3 – The Fast
Be ready to accept what comes. Although you have made detailed plans for this period, a few things are likely to not go as planned or expected. We hope that your experience can also be passed on to help others in the future.
You have our best wishes!
Starleaf VSED 