Awakening Joy – this link has to be first! While Starleaf was always an upbeat individual, Ron was not. Additionally, Starleaf was dragged down by 25 years of pain when they first took this course via audio on the recommendation of one of his New Warriors friends. They ended up repeating the course annually over the next five years to keep getting a boost. Starleaf said that it enabled her to focus more on the joys, and less on the pain, for her last 10 years; Ron credits it with maintaining his emotional equilibrium through (and beyond) her death.
PAIRS – then again, maybe this link was most important to Starleaf and Ron. They went through the 6-month course at a time when Starleaf was fed up with Ron not being “present” in her life. The course changed that and they maintained a monthly group meeting to work on relationship growth until her death.
Phyllis Schacter – her website provides an excellent resource for anyone considering VSED.
Phyllis Schacter – Medical Preparations for VSED
Sallekhana – fasting as an ancient religious rite in India
A religious view of fasting to death in India
Santhara – India television commentary on an occurrence of fasting to death
India TV Commentary on Fasting to Death
Patients Rights Council – provides a set of basic questions and answers for those considering Voluntarily Stopping Eating and Drinking.
PRC – VSED Questions & Answers
Care Giving Supplies – again from Phyllis Shacter
Phyllis Shacter – Care Giving Supplies
Our added comments on the care giving supplies:
Wash cloth – kept damp in a bowl beside her, this was one of Starleaf’s most comforting items; she frequently used it to dampen her face and neck
Gait belt – the one day we could have used it, it was not there; be sure to keep one on hand from the beginning. A wide web belt is an alternative (actually, a gait belt is a wide web belt). Youtube videos are available to show gait belt use – note that an “underhand grasp” should be used when assisting walking with the belt.
Humidifier – ours worked fine and likely provided at least emotional support to Starleaf; however, ours did get the floor wet for an area in front of the humidifier – make sure you try yours out ahead of time to understand its traits.
Swab sticks – our lemon-glycerin swab sticks worked fine for several days, then Starleaf’s mouth became too sensitive to them; she wanted them soaked overnight in plain water before use; she did not like some mouth sponges with stick handles as an alternative; she did try the lemon-glycerin swab sticks ahead of the VSED to confirm they were okay for her. A further option, which we did not try, is to place the sticks in the freezer for a possibly more refreshing experience.
Bedside commode – we used two of these: one fit over the bathroom toilet to provide a higher seat (and with armrests); the other was kept nearby to where Starleaf was sitting – very comforting after the hospice nurse twice used suppositories to induce bowel movements; a commode with lid down also provided a useful portable seat during repositioning after Starleaf lost the ability to walk on her own.
Tab style diapers – we should have tried these beforehand as the “Medium” size we bought was enormous – fortunately hospice had a much smaller “Medium” to use.
Pillows – when Starleaf was restless and obviously uncomfortable in bed, a large number of pillows were used to give her a variety of alternative positionings. Having 4 large pillows available, plus several smaller ones, can help for this case.
Walker with seat – although we had a tricycle-type walker available to potentially assist Starleaf with mobility, it did not have a seat. A walker with a seat would have helped greatly in moving her after she could no longer walk.
Compassion and Choices – contacting Compassion and Choices (previously known as Death with Dignity) should be one of the first steps for someone considering VSED.
Compassion and Choices Website
While the Compassion and Choices website should be able to provide the latest information on VSED, here is their document at the time of Starleaf’s process.
Compassion and Choices VSED Info
If dementia is one of your concerns, please consider using these tools from Compassion and Choices:
Dementia Values and Priorities
Nurses’ Experiences with Hospice Patients Who Refuse Food and Fluids to Hasten Death – from The New England Journal of Medicine 349:4, July 24, 2003; Oregon hospice nurses report, among other findings: on a scale from 0 (a very bad death) to 9 (a very good death), the median score for the quality of these deaths, as rated by the nurses, was 8.
New England Journal of Medicine – Nurses’ Experiences
What Matters Now – provides a free website for sharing information with family and friends during serious illnesses. The site is preformatted so it is a fill-in-the-blanks type of setup and can be set as public or private (which is what Starleaf wanted). In addition to materials posted on the site, updates are automatically mailed to each email address set up for private access.
Starleaf VSED 