So to address the most pressing question first, what’s with all the acronyms? In some cases, it is because in our culture we tend to get uncomfortable when we are talking about death and dying, but in this case it could be that the actual names are a bit cumbersome, so the acronyms save some time and tongue twisting.
MAID stands for Medical Aid In Dying, which is a process that is legal in Colorado, by which a person with a terminal diagnosis who is likely to be within 6 months of dying can obtain medication from a physician that will help them end their lives. The individual must be able to administer the medication to themselves orally, after which they will fall into a very deep sleep and soon die peacefully. MAID patients also cannot be experiencing dementia or cognitive impairment either at the time they obtain the medication, or at the time they administer it to themselves.
Although MAID is helpful for many terminal patients who wish to die without significant pain, or wish to have more control over how and when they die, the laws around MAID often disqualify others who are not terminal but wish to have that control and a peaceful death experience as well. This is where VSED comes in.
VSED (often pronounced Vee-Sed) stands for Voluntarily Stopping Eating and Drinking. Unlike MAID, VSED isn’t governed by its own Colorado statute – it doesn’t need to be. It flows from a right that has been recognized for decades: the right of any competent adult to refuse medical treatment, including food and water. That means VSED is legally available not just in Colorado but in every state, and when appropriately supported by hospice or palliative care and ideally a death doula as well, it can provide a relatively peaceful and comfortable way to end our lives.
Here’s the “how it works” part, and as with anything else, there are advantages and disadvantages – it isn’t for everyone, so if you have strong objections to what you have read so far, it likely isn’t for you. If you are still reading, I will provide an honest but very basic breakdown of how it works, what the plusses and minuses are, and then you can decide for yourself if this could be an option for you. That’s actually one of the advantages right off the bat, you decide, and you control the process.
First and foremost, the paperwork. Because everything in life involves paperwork, it makes sense that death should involve a bit of paperwork, too. This paperwork, though, is really, really, really important so please don’t disregard this part of the process. This paperwork, among other things, includes your Advanced Directive with a special VSED Addendum and these elements are a big part of how you control things to the very end, and even after.
While MAID cannot be used for folks with a dementia diagnosis, VSED can be pursued by someone who still has decision-making capacity. Some people complete a VSED Advance Directive while they’re still able to make decisions, hoping it will guide their care if they later develop dementia or lose capacity. I want to be honest with you about this option, though: it’s one of the more legally complex areas of end-of-life planning right now. Courts and care facilities don’t treat these directives consistently, and there’s real disagreement about whether – and how – an advance directive can direct someone else to stop assisted feeding once a person can no longer choose for themselves in the moment. If this situation applies to you or someone you love, please talk it through in detail with your death doula and with an elder law attorney before relying on a directive alone. It’s an important tool, but it isn’t a guarantee.
In your Advanced Directive, you will name a Medical Durable Power of Attorney (MDPOA) or healthcare proxy. This is a person in your life who you trust implicitly to carry out your wishes when you are no longer able to express them yourself. Once the VSED process is underway, generally after the first 4 to 5 days or one week (although it is different in every case) people often begin to sleep more, and will likely eventually become unconscious in the final stage. At this time, it is important for your healthcare proxy to be able to ensure and assert your wishes to die by VSED to your caregivers or loved ones who may want to reverse your decision. Again, this is legal in Colorado, and having that paperwork is what protects not only you and your VSED process, but also your loved ones and your healthcare proxy from any repercussions.
Once that part of the process is complete, it is time to inform your medical providers about your wishes, and to engage the services of a death doula and a hospice or palliative care team who will support your VSED process. A death doula can help you to find the right hospice team for you, and you will generally need your doctor to help make a referral for hospice. A downside is that not all medical providers or hospice organizations are comfortable working with VSED patients, so it may take some legwork, but that is where a good death doula can be helpful.
Once you have informed your own medical team and arranged for hospice/palliative care during your process, it is time to begin the often difficult process of telling your loved ones. For many people who have been suffering with chronic or painful medical conditions, their loved ones have already experienced how difficult life has become, but many loved ones may not agree with this decision or be able to be supportive. A death doula can work with family and friends to try to help them understand your choice and even support you in whatever ways they are comfortable, but in the end it is your life, your death, and your choice.
Often loved ones who can accept our decisions will want to be involved by visiting during our VSED process, sitting with you or reading to you, sharing stories or memories, looking at photographs together, or playing music. This can be a time of connecting with loved ones in a meaningful way, talking about what matters most to you, finishing any unfinished business, or creating some important memories for them to carry after you are gone.
The VSED process often happens in phases and can take just a few days or even several weeks, but a general guideline is that death can occur within 10 to 14 days. Please remember, there are no guarantees regarding time – much of that depends on the person’s condition prior to starting VSED, or how rigorously they adhere to the plan to withhold food or liquids. While the fact that VSED does take some time can be a drawback for some, it can also provide a time of deep connections and intimacy, and rich meaning-making with loved ones.
A very common question from many people is, “Isn’t not eating and drinking incredibly difficult and uncomfortable?” And to be honest, the answer to that question is that, in general, yes, it can well be. However, when we plan for a VSED death, and when we have a hospice team on board, the symptoms can be medically treated in such a way that they are manageable. Hospice uses several medications that ease discomfort, anxiety, delirium, or other symptoms that can occur, and your caregivers can administer atomizing mists of water and glycerin swabs so that your mouth does not feel dry.
It is true that a successful VSED process requires dedication and commitment not only on the part of the individual, but from the care team as well. It is important to have 24/7 caregiver/nursing coverage during this time to not only provide medical assistance but also emotional support. Your death doula and/or your hospice team can help to coordinate this support according to your wishes. A doula can create a plan with you to ensure supports are in place to get you through any times that are difficult, and to remind you of why you made this choice. No one can keep food or water from you if you change your mind mid-process, but those supports do help you to stay on track if that is what you choose.
When death does occur, it is most often after a period of a few days or hours when you may no longer be conscious, and in that way a VSED death is very much like a natural death that occurs after illness or as a result of our bodies shutting down due to aging. After death, your hospice team can make a declaration of death, and your doula can then notify the funeral director of your choice to collect your body. At times, loved ones may wish to wash the body, or perform a brief ritual to help them to say goodbye, and your doula can help with that as well.
There is much more to be said about VSED, and I will write more about it in future posts, but if you have questions about any part of the process at all, please reach out to me or any qualified end-of-life doula to get answers. I offer free initial consultations and will be happy to meet you at your convenience either by phone, video, or in person. Remember, it is your life, your death, and with VSED, it is your choice.
