1. There are many choices about how and when we die.
I focus here on VSED because that is what I know so intimately. A person must be mentally competent in order to VSED. Otherwise, he/she will not remember why they are not eating and drinking.
2. Talk with your doctor about your wishes as early as possible.
If you think that VSED could be a choice for you in the future, whether you are healthy now or not, let your doctor know about this possibility. Put this information in your Health Directive. Find out if your doctor will support you through this process. Would he/she make a house call if necessary? Will he/she be easily available by phone 24 hours per day? If your doctor will not support you, you may want to consider finding a different doctor who will be supportive. I discoverd that many hospices will not support VSED for people with neurological diseases unless they have a six-month terminal diagnosis. A person with Alzheimer’s (and some other neurological diseases) will no longer be mentally competent if he/she waits to VSED until they are within the last six months of life. Thus, end-of-life medical support from another medical professional, such as a doctor or nurse practitioner, is essential.
3. Complete necessary legal paperwork.
Health Directives: For years, Alan and I had our notarized Health Directives in place. We would review our Health Directives every year or two and update them. After Alan healed naturally from laryngeal cancer, the Alzheimer’s Disease got worse. He was clear that he did not want to be treated for any acute disease as a means to prolong his life, even a simple bladder infection or flu. This information was included in his Health Directive.
If a person is in the early stages of dementia/Alzheimer’s, it’s very helpful if he/she completes the Alzheimer’s Disease/ Dementia Mental Health Advance Directive. It is on the End of Life Washington website. This form is recognized under Washington state law, but it may or may not be recognized in your state. The form offers an important way to think through your wishes and to record them. Bear in mind that the form has to be completed and witnessed and notarized while the person is mentally competent, and preferably in the presence of an attorney. There are some sections in this Directive that require legal guidance. It is important to address this as the first obvious signs of dementia become apparent and before competency is lost. Some people who have no dementia diagnosis and no family history of Alzheimer’s even choose to fill out this Directive when they are healthy. Click to see Robb Miller’s discussion about the End of Life Washington Health Directive and Alzheimer’s Disease and Dementia Mental Health Advance Directive.
When Alan was diagnosed with both laryngeal cancer and Alzheimer’s, we had his doctor complete a POLST form for him. POLST is an acronym for Physician’s Orders for Life Sustaining Treatment.
POLST: When Alan was diagnosed with both laryngeal cancer and Alzheimer’s, we had his doctor complete a POLST form for him. POLST is an acronym for Physician’s Orders for Life Sustaining Treatment. It is a form that is offered in Washington as well as other states. The Washington form is neon green and printed on heavy stock that is posted in a prominent place in the home, most often on the refrigerator. The form allows an individual with a serious illness or fragility to summarize their wishes regarding life-sustaining treatment. Emergency personnel, responding to a home, are trained to look for the bright green form and to respect the treatment decisions outlined on it. If the form indicates, “do not resuscitate”, emergency personnel can respect that without concern for repercussions. To be legal the form must be signed by both the doctor and the patient.
4. Check with your local hospice.
Our local hospice in Whatcom County said they would not accept Alan as a patient until he was in the end stage of coma. There are some hospices that will support the VSED process. Contact your local hospice and find out. Also, call your Compassion & Choices office in your area, and ask them for guidance and referrals. Compassion & Choices may be able to give you names of medical doctors or hospices that are willing to support someone through VSED. If your state does not have a Compassion & Choices office, call the office of the National Compassion & Choices. It is essential to have proper medical support throughout the VSED process.
It appears that there is no standardized response yet from hospice regarding someone who wants to VSED.
It appears that there is no standardized response yet from hospice regarding someone who wants to VSED. Some hospices will accept such a person, and others will not. Some will accept a VSED patient on the second day of the fast. Hospices that have affiliation with religious organizations, may have restrictions. A person, who is going to VSED, requires adequate professional medical support so he/she does not suffer.
5. The realities of the VSED process:
Before the VSED process begins, a care giver needs to get all the necessary supplies together. This will support the patient through the VSED process.
Five days prior to starting the VSED process, Alan reduced his calorie intake to about 500 calories per day. I believe this helped to speed up the VSED process. His body was healthy, and he wanted to die and go through the VSED process as quickly as possible. The key to dying more quickly is for the person to not have any food or water even if this is challenging to the person’s loved one. Sometimes this protocol is difficult for the caregivers. Some family members or caregivers feel they are providing extra comfort to the patient if they give him/her small sips of water occasionally. This actually prolongs the process. A person can go without food for quite a while, but that is not the case with the withdrawal of water. The person dies mostly from the dehydration process. If a person is very overweight, it may take him/her longer to VSED. You can discuss this issue with your doctor.
I gave strict instructions to the caregivers that I was the only person who could talk with Alan if he asked for food or water. On the fifth day, he asked me twice. Both times I reminded him why he wasn’t eating or drinking. I explained that drinking water would prolong the process. Then I said to him, “Would you like me to give you a glass of water, or would it be okay if I spray mists of water into your mouth until you are satisfied?” Both times he said the mists of water was okay. After I had explained to Alan why he wasn’t eating and drinking, if he had still asked for water, I would have, of course, given it to him.
6. Death Doulas and Death Midwives are additional resources.
There is a growing movement of death doulas or death midwives. These people give guidance in preparing for and following the death. Do some online research. They may have a medical professional who works with them who can administer care and medication.
7. Caregivers are necessary.
To help care for Alan, I hired two Certified Nursing Assistant caregivers on twelve-hour shifts. Even if Alan had been on hospice at home, I felt we still needed two caregivers in order to have excellent round-the-clock care. I found them myself through personal networking. However, many people will prefer to call a certified care giving agency who have care givers who work for them. Some people will not be able to afford the cost of extra care giving help. It’s possible that care givers could then be hired for just the latter days of the VSED process, or friends and/or family could step in to help. Whether or not your loved one is in hospice, you can contact them and ask if they have a list of private caregivers who are experienced in end-of-life care. In addition to taking good physical care of the person who is dying, the caregivers are eyes and ears for the doctor. Good medical support and care giving support is essential to have a good VSED process.
Based on my experience, it’s necessary to also have twenty-four hour caregiving support. This can also be done by family and friends. However, since they are not trained professionally for end of life care, they need to get some training, somewhere so they know what to do. They are certain considerations, such as: how to turn a person in bed; how to apply an adult diaper; how to give a suppository; how to prevent bedsores, how to keep the face moistened, how to bath the body, and more.
Most caregivers are trained to help people prolong and support life rather than support an “elective” death.
8. Caregivers must be supportive of VSED.
Most caregivers are trained to help people prolong and support life rather than support an “elective” death. Taking care of someone who is going to VSED is operating in another paradigm. In this case, the caregiver has to be supportive and respectful of the patient’s and family’s choice while giving good physical care. If the caregiver is against the concept of VSED, he/she should not be hired. Some caregivers’ religious beliefs may preclude them from being supportive. The caregiver also has to adhere to the boundaries set by the patient’s advocate.
9. Visit a dementia facility.
As part of the decision making process, you and your loved one may want to visit one or two dementia facilities. Make sure that your tour of the facility includes seeing the Alzheimer’s patients who are in the last stages of Alzheimer’s, in the last eighteen to twenty-four months of life. I recommend that you do some research about the seven stages of Alzheimer’s. Click to see a video from Tresa Mariotto – Executive Director of Woodway Assisted Living in Bellingham – on her experience working with dementia and Alzheimer’s patients.
10. VSED in a dementia facility:
Dr. Stan Terman (www.caringadvocates.org), has a team of people who help prepare Living Wills that state that if a person develops dementia in the future, and gets to the point of no longer being able to feed him/herself, then that person’s agent can be designated to request that the patient no longer be fed or given liquids. This Living Will is executed while the person is still mentally competent. The Living Will can state that food be put near the person. Because the person is incapacitated to feed themselves, their death will effectively be hastened. Due to the fear of legal charges of neglect, most facilities will not do this at this time. If you were to execute this kind of Living Will and your loved one is no longer mentally competent, make certain that the facility would be willing to respect your wishes.
11. A supportive physician is essential.
The relationship between a patient and a doctor or nurse practitioner is very important. The key to success in using VSED is having a supportive physician or nurse practitioner who is willing to prescribe medications to lessen anxiety and discomfort as the body begins to shut down. It is ideal if the physician or nurse practitioner is not at all hesitant about prescribing sufficient medication to sedate the patient if requested and desired. This is important information that should be discussed prior to starting the VSED process.
It is important to have a doctor you are comfortable with, and it is important to take the initiative in every appointment over the year(s) to express your views. This helps your doctor know that your decision is one that has been carefully considered over time. It is important to ask the doctor directly if they would support you in the event that you ever made a decision to VSED. If you find, in early conversations, that the doctor will not be supportive, it is best to try to re-establish a relationship with one who would.
Alan had been seeing a wonderful doctor of osteopathy for a few years. We developed a comfortable, mutually respectful relationship with her. Alan had talked with our doctor for many months about his thoughts about VSED. He often asked her questions about what would physically happen to him during the VSED process. Our doctor knew how important this choice was to Alan, and she also knew that he was still mentally competent.
When I called her and told her what hospice had said, she immediately replied, “Then I’m going to take care of Alan.” She made three house calls during the 9 ½ days of his dying process, and she was on twenty-four hour call. There were times when we had to call her in the middle of the night.
My husband wanted to have as conscious a death as possible. He did not want to suffer physically, and he only wanted the necessary medication to keep him from suffering. He only had small amounts of medication for the first several days. As he got more dehydrated and his body began to shut down, the doctor stayed one step ahead of him and made sure that he was kept comfortable with the proper medication.
Before the VSED process began, one of the experienced care givers got all the supplies together that would be necessary to keep Alan comfortable. Please see the list of care giving supplies on this page.
In another section of this website, “Alan’s transition, 9 ½ days,”, I have given detailed information about what happened to him as he progressed during the VSED process. This is important information.
12. Who cares for the primary caregiver?
I also had to think about emotional support for myself. For support, I asked a friend to come and stay with me at the house during Alan’s dying process. Her focus was noticing my emotional needs and taking care of me. This was a very difficult time for me. I was losing my best friend. I was anxious. I was exhausted. After Alan died, I grieved for a long time. See section on “My Journey Through Grief.”