Jainism: Santhara/Sallekhana

Voluntary Stopping Eating and Drinking is not new. It is merely becoming more common in our culture as people learn more about it. There are many ways to approach VSED. While my husband was considering to go through VSED, I learned that some of the Jains in India do this at the end of their life. It is part of their religious beliefs.

When I educate others about VSED and end of life issues, I am not discussing this in the context of religion. I think of VSED as a compassionate way to exit this life when a person does not want to experiences the alternative choices available to them. It is applicable in the face of many debilitating diseases that cause a great deal of suffering.   

http://www.npr.org/sections/goatsandsoda/2015/09/02/436820789/fasting-to-the-death-is-it-a-religious-rite-or-suicide

Why Aren’t We Talking About It?

I wrote my first Health Directive when I was forty years old. It felt uncomfortable. Now it feels so routine when I update my Health Directive because I’ve exercised the muscle of learning about end of life choices. I acknowledge that death is a certainty and an extension of life.

Maybe someday everyone will fill out a basic Health Directive when they get their driver’s license. Once we turn eighteen years old, if we don’t have a Health Directive, we turn our power over to the medical profession to make decisions for us. By talking about our values and wants with loved ones we can pave the path to a more conscious way of dying. 

The conversation project is also a great resource for discussing end of life choices.

http://theconversationproject.org/

End of Life Choices Conversation Starter

It’s important to have many ways to initiate the conversation with your loved ones about your end of life wishes. Then they can be written into a formal Health Directive which is witnessed and notarized.

This is another tool to help you get started and stay on track!

As elders in our larger community, we have a responsibility to be role models for younger people. I feel this all the time in my own life. I’m aware of how keenly younger people want to know about aging and end of life issues.

http://www.aafp.org/news/health-of-the-public/20161205conversationstarter.html

End of Life Choices For Young People With Life Limiting Conditions

Many parts of Europe are far more enlightened about end of life choices and the compassion that surrounds it. It is horribly sad when we think about young people dying early in their life. Yet when this occurs, we want to have compassionate choice available to us. End of Life choices affect not only elder people but young people too. Below is a link to a full case study and guideline recommendations on how to deal with end of life care, compassion and choices with young people 0-17 with life limiting conditions. 

https://www.nice.org.uk/guidance/ng61

Ethical Perspectives about VSED

Recently, I helped organize and speak at the first national conference on VSED. It was held at Seattle University October 14-15, 2016. About 225 people attended, mostly professionals. The conference was excellent.

If you go to https://phyllisshacter.com/the-story/1st-national-conference-vsed/ you can read the article about the conference. 

This article by Norman Cantor is worth reading about various ethical perspectives about VSED. It’s difficult for me personally to think that a court could uphold and go against someone end of life wishes. We have to be vigilant about our rights. This can be a slippery slope.

Honing the Emerging Right to Stop Eating and Drinking

Important End of Life Conversations

This is an all too human story. Having supported my mother and my husband through their end of life choices, I am grateful for the clarity of information that existed between them and me. They were open about their wishes. We had good communication. Many people don’t have these conversations because it creates discomfort for them. Usually, it’s the children who have conflicted issues about discussing the end of life. They don’t want to acknowledge their parents’ deaths.  Following that, they have to acknowledge their own death because it is something we all will eventually face. 

I remember how difficult it was for me to talk about these issues with my own mother. It took years before I got comfortable with it. The conversations made me feel very sad because I had to face that I would lose her someday. I loved her very much. Nevertheless, I learned so much about end of life issues from her courageous demonstration. She was a teacher to me. She certainly helped me pave the way for clear communication with my husband once he was diagnosed with both Alzheimer’s and laryngeal cancer. 

https://www.facebook.com/humansofnewyork/photos/a.102107073196735.4429.102099916530784/1458675897539839/?type=3&theater

 

Margot Bentley’s VSED Story

When I presented recently at the first national conference on VSED at Seattle University, Katherine Hammond followed me in the program. She was Margot Bentley’s daughter and Health Agent. She tearfully told a tragic story about how her mother’s Health Directive was not honored in a nursing home. When she could no longer feed herself, she wanted to be able to stop eating and drinking. The nursing home would not allow this to occur. With the Alzheimer’s getting progressively worse, her mother was kept alive for many years until her body turned rigid. There was a police order that prevented her daughter from taking her home where she would be able to not eat and drink and die peacefully. This is what her health directive requested. Sometimes we are grateful for a death. This is one of those times. Margot Bentley finally died at the nursing home in the Vancouver area in Canada. In order to prevent pain from her body becoming rigid, her doctor gave her additional morphine. Then she died.

From Vancouver Sun [PNG Merlin Archive]

http://vancouversun.com/health/seniors/margot-bentley-dies-a-finality-that-couldnt-come-too-soon-for-anguished-family

If you are interested in how the story has progressed here are the first two articles about the Margot Bentley case:

MEDICINE MATTERS: A family's anguish as nursing home continues feeding vegetative patient

MEDICINE MATTERS: CEO apologizes to family for breach of privacy by care aide in Margot Bentley case

Care Giving Supplies

Caregiver_HeartSomeone contacted me because they are the advocate for a loved one who has decided to VSED. They asked for a list of care giving supplies to have on hand to facilitate the process and keep their loved one comfortable. One of my colleagues, who was a caregiver for Alan, put this list together. These are the items we assembled before Alan started. It was important to me that we have everything on hand so full attention could then be given to Alan once he started to VSED. These supplies can be acquired from local medical supply stores, local drugstores and/or on-line. If the person is going to VSED at home and Hospice is involved, Hospice is often able to supply many of these things. Coordinate this list with them before purchasing items or renting equipment independently.

  • A cool mist humidifier will provide moisture in the air and help offset the bodily drying sensations brought on by dehydration
  • Eye drops, lip balm and body lotion administered routinely will soothe eyes, lips and skin.
  • Small one ounce spray bottles, be sure they only spray fine mist, used to quench thirst but providing minimal hydration.
  • Disposable oral swab sticks, the little sponges on a stick. These are good for cleaning the teeth, gums and tongue. It is recommended that they not be used to deliver moisture for two reasons: 1) The sponge can hold a lot of water and offset the goal of not drinking 2) A person might reflexively chomp down on the stick and could potentially bite the sponge portion off, making it become a choking hazard.
  • Tab style adult diapers to be used when a person can no longer get up. These can be used open under the person, or tabbed closed.
  • Bed pan to be used if a person is conscious and needs to eliminate but can no longer get up.
  • Hand held urinal for men, easier than a bed pan if the need to void is felt.
  • Bedside commode useful when a person can no longer get to the bathroom but is able to get up independently or with assist.
  • Hospital Bed helps the caregivers to provide better care as the process continues; the bed can be raised to provide easier care access, lowered so the person can get out more easily, raised and lowered at head and foot to vary body position and prevent pressure sores. The ability to raise the head of the bed, can become important at later stages as breathing and lung clarity changes and is necessary when administering medication.
  • 3 or 4 cloth reusable waterproof pads, also referred to as draw sheets. These come in various sizes and get no smaller than 30” x 34”. They are placed under the person in bed and, besides acting to protect the bed from fluids, they are essential for moving the person easily and comfortably.
  • Disposable waterproof rectangular under pads used on top of draw sheets and also on furniture if person is sitting up out of bed.
  • Gait belt, worn around the person’s waist when they get up. The belt allows a caregiver to hold, guide and stabilize the person without risk of injury that might be caused from holding on to the arm or clothing. If you hire professional caregivers, they will likely bring a gait belt, so check with them before purchasing.
  • A & D Ointment, or some other moisture barrier cream can be helpful in hip creases, inner thighs and buttock region for moisture or friction aggravation.
  • Wash Cloths
  • Hand Towels
  • Baby Wipes
  • Disposable Gloves, available in latex or non-latex.
  • 13 Gallon Kitchen Garbage Bags
  • Baby Monitor, to listen for person’s needs when not in with them.
  • Bell, for person to ring for help.

 

Summary Shopping List:

From the Drugstore

Eye Drops

Lip Balm

Body Lotion

Small Spray Bottle

Disposable Oral Swab Sticks

Tab Style Diapers

Reusable Waterproof Pads (Draw Sheets)

Disposable Waterproof Rectangular Under Pads

Hand Held Urinal for Men

Bed Pan

A & D Ointment

Baby Wipes

Disposable Gloves

13 Gallon Kitchen Garbage Bags

 

From Medical Supply Store

Gait Belt

Hospital Bed

Bedside Commode

 

Other

Cool Mist Humidifier

Wash Cloths

Hand Towels

Baby Monitor

Bell