Frequently Asked Questions
Frequently Asked Questions for Vermont Residents |
For Out-of-State Residents |
|
Q: What is Vermont’s Act 39? A: Act 39 allows a capable, terminally ill, adult patient who is a Vermont resident to request and obtain a prescription for medication to be self-administered for the purpose of hastening the patient’s death. Participation by patients and doctors is entirely voluntary. For more on the requirements and process, see PCV's Guide to Medical Aid in Dying. Q: Do you have to be a Vermont resident? What qualifies as residency? A: Yes, you must be a Vermont resident. The prescribing doctor is the person who must confirm that you are a Vermont resident. Factors to be considered may include whether you own or lease a residence in Vermont, whether you have a Vermont driver's license, whether you filed a tax return in Vermont and whether you are registered to vote in Vermont. Note (April 2023): The Vermont legislature recently passed H.190, removing the residency requirement from Act 39, which is now awaiting signature by the Governor. Q: Are doctors required to participate? What if my doctor won’t help me? A: There are many doctors in Vermont who are assisting patients with medical aid in dying. However, doctors are not required to participate. Health care facilities may not prohibit their doctors from participating except in the case of federally funded institutions which are prohibited by federal regulation from participating. We recommend reading “How to Talk to Your Doctor.” Doctors are required under Vermont’s Act 39 and Vermont’s Patient Bill of Rights to discuss all the patient’s options so that the patient can make informed decisions. If your doctor does not want to discuss Act 39, ask for a referral to another doctor. You may have to be persistent. Patient Choices Vermont is working with various institutions to encourage them to set up internal referral systems. Many Vermont patients are served by Dartmouth Hitchcock Medical Center in New Hampshire. DHMC doctors who are licensed in Vermont CAN assist Vermont patients with medical aid in dying under Act 39. For plain English guidance on Act 39 see PCV's Vermonter's Guide to Medical Aid in Dying and End-of-Life Decision Making |
|
With passage of H.190, removing the residency requirement from Act 39 on May 2, 2023, qualifying non-Vermont residents gained access to Medical Aid in Dying in Vermont. Please refer to the page For Non-Residents for more detailed advice and information about this important change. For people who live out of state, medical aid in dying is now legally available in Vermont. This care must be prescribed by a Vermont-licensed physician and you must meet all the qualification requirements. Important: The patient must be physically capable of being in Vermont for every step in the process, and the medication may only be used in Vermont. Patient Choices Vermont Does Not Maintain a List of Doctors: If you are seeking medical aid in dying in Vermont, please understand that PCV does not maintain a list of doctors. Your best approach is to ask your existing doctor to make a referral to a Vermont doctor. Alternatives to Medical Aid in Dying: If you have a terminal illness and live in a state that does not allow medical aid in dying, we strongly suggest that you talk to your medical and hospice providers about how you would like to be cared for and what options you may have. Specifically ask them about palliative care, palliative sedation and voluntary cessation of eating and drinking. You may find books on these topics helpful. See our Book Review page. |
PCV's Helpline
802-448-0542
Info@PatientChoices.org
802-448-0542
Info@PatientChoices.org
FAQs Continued:
Q: How long does the Act 39 process take?
A: Once you have confirmed that your doctor will assist you through the Act 39 process, we still recommend that you allow two months because multiple appointments and a second opinion are required. We recommend confirming with your doctor well ahead of time that he or she will assist you, even if you are healthy. This will simplify the process down the road. Qualifying non-residents should budget ample additional time for travel to the state, finding referrals, accommodations and other factors. Please visit the page For Non-Residents for more detailed information and advice.
Q: What pharmacies fill Act 39 prescriptions?
The current formulation for the medication requires a compounding pharmacy. For information on pharmacies in Vermont that fill medical aid in dying prescriptions, please contact PCV using the contact form or call 802-448-0542.
Note that, with the passage of Senate Bill 74 in 2022, pharmacists and all care-giving professionals have legal immunity under Act 39.
Note that, with the passage of Senate Bill 74 in 2022, pharmacists and all care-giving professionals have legal immunity under Act 39.
Q: What are the drugs that are prescribed? How much do they cost? Is it covered by insurance?
A: Your doctor will prescribe the medication that is appropriate for your condition. The patient must be able to swallow and absorb the medication. Instructions from your doctor and pharmacist should be carefully followed. Recent costs are $750. Insurance plans covering drugs for Medicare patients typically do not cover the cost. Other types of insurance do. Check your coverage.
Q: Can a patient change their mind? Does a doctor or nurse have to be present?
A: The patient is fully in charge of the decision-making and may change his or her mind at any time. There is no requirement for a medical professional to be present, but many families elect to have a hospice nurse with them when the patient takes the medication.
Q: What are the alternatives to medical aid in dying?
A: This question can arise when a patient is severely debilitated but doesn’t have a terminal diagnosis, and therefore doesn’t qualify under Act 39. Patients always have the option to stop eating and drinking (VSED), which usually results in death in 2-3 weeks. Some patients receive palliative sedation, which may ease the way, especially if they are in pain. Patients may also request the withdrawal of treatments. These approaches are described more fully in the Glossary of Terms.
Q: Can I use medical aid in dying if I am in hospice? What if I'm in a hospice facility or assisted living or a nursing home?
A: Many patients who use Act 39 are in hospice care, typically at home. Hospice support for the dying and for families is very helpful whether or not the patient is planning to use Act 39. Under Act 39, hospitals and nursing homes are permitted to adopt policies prohibiting patients from taking terminal medication in their facilities. Other residential facilities are not permitted to prevent residents from using medical aid in dying. In practice, most people using medical aid in dying want to die in their home or in the home of a family member.
Q: What is palliative care?
A: Palliative care is specialized medical care for people living with serious illness. The focus is on providing relief from the symptoms and stress that accompany illness. The goal is to improve quality of life for the patient and their family. Palliative care is provided by a multidisciplinary team including physicians, nurses, social workers, chaplains and others who provide an extra layer of support. Palliative care can be provided at any age and along with curative treatment.
Q: What is palliative sedation?
Please see the definition below in the Glossary of Terms.
Q: Can the decision to use Act 39 be in my advance directives so that I can use medical aid in dying even if I'm not able to make the decision at the time?
A: No. In order to qualify under Act 39, the patient must be able to make their decisions.
Q: How many people have used Act 39?
A: 173 people qualified to use medical aid in dying from inception in 2013 through December 2022. The most recent official Vermont Department of Health report was dated June 30, 2021. At that time, 116 people had qualified to receive terminal medication and about two-thirds of them are known to have used it. Others died without using medical aid in dying. From July 2021 through December 2022, 57 people qualified, according to the Department of Health. At the current annual rate, this represents approximately .6% of the annual deaths in Vermont.
Q: What changed with the 2022 amendments in Senate Bill 74?
A: This bill made three important improvements to Act 39. See the summary here.
Find out more from Vermonters who share their stories on using medical aid in dying in Patient Choices Vermont's Living While Leaving video series...
More FAQs and Glossary of Terms
Q: What is the difference between medical aid in dying and physician assisted suicide or euthanasia?
Medical aid in dying is legal in 11 US jurisdictions. It is the process that allows a mentally competent, terminally ill adult to legally request a prescription for a life-ending medication from their physician. The medication must be self-administered. Medical aid in dying is not suicide. Suicide refers to the death of patients who otherwise have a choice to keep living, which Act 39 patients do not.
Euthanasia or physician assisted suicide refers to the intentional ending of a person’s life upon their request, performed by a physician or other medical healthcare professional, usually by lethal injection. Euthanasia is illegal everywhere in the United States. It is legal in certain European countries and in Canada.
Death with Dignity: Death with dignity refers to both a concept and a movement; in both cases it includes the ideas of limiting suffering and providing control and choice at the end of life. The initiative to get Vermont’s Act 39 in place was originally called Death with Dignity Vermont. Similar laws are available in Oregon, Washington, California, Colorado, Hawaii, New Jersey, Maine, New Mexico, Hawaii and the District of Columbia.
Euthanasia or physician assisted suicide refers to the intentional ending of a person’s life upon their request, performed by a physician or other medical healthcare professional, usually by lethal injection. Euthanasia is illegal everywhere in the United States. It is legal in certain European countries and in Canada.
Death with Dignity: Death with dignity refers to both a concept and a movement; in both cases it includes the ideas of limiting suffering and providing control and choice at the end of life. The initiative to get Vermont’s Act 39 in place was originally called Death with Dignity Vermont. Similar laws are available in Oregon, Washington, California, Colorado, Hawaii, New Jersey, Maine, New Mexico, Hawaii and the District of Columbia.
Q: What is an Advance Directive? Can I use it to specify that I want Act 39?
An Advance Directive is a legal document that is operative when a patient is unable to communicate or make decisions for themselves. First, it states an individual’s preferences for medical treatment or withholding of medical treatment, Second, it appoints a health care agent empowered to speak for the patient if the patient is unable to do so. The appointment of an agent is sometimes called a durable power of attorney, and the directive used to be called a living will, but there is no substantive difference with the terms currently in use. Click here for Vermont Advance Directive forms.
Advance Directives and Act 39: Under Act 39, the patient must be capable of making their own medical decisions. Therefore, by definition, advance directives are not operative when a person is making a decision to use medical aid in dying. However advance directives are always good to have in place so that your wishes will be known and followed if you are unable to communicate.
Advance Directives and Act 39: Under Act 39, the patient must be capable of making their own medical decisions. Therefore, by definition, advance directives are not operative when a person is making a decision to use medical aid in dying. However advance directives are always good to have in place so that your wishes will be known and followed if you are unable to communicate.
Q: What is hospice and how does it work with Act 39?
Definition: Hospice care is available to a terminally ill person who is expected to have six months or less to live. Hospice care can be provided in the home or in a hospice facility and typically involves services provided by a team of health care professionals who maximize comfort for a person who is terminally ill by reducing pain and addressing physical, psychological, social and spiritual needs. To help families, hospice care also provides counseling, respite care and practical support. Unlike other medical care, the focus of hospice care isn't to cure the underlying disease. The goal of hospice care is to support the highest quality of life possible for whatever time remains.
Hospice and Act 39: All Vermont hospice organizations have experience supporting patients through end of life with Act 39. Most people find it very beneficial to have this service in place as they are considering or using medical aid in dying.
Hospice and Palliative Care go hand in hand to provide comfort to people nearing the end of life.
Hospice and Act 39: All Vermont hospice organizations have experience supporting patients through end of life with Act 39. Most people find it very beneficial to have this service in place as they are considering or using medical aid in dying.
Hospice and Palliative Care go hand in hand to provide comfort to people nearing the end of life.
Q: What is a terminal illness?
Definition: A terminal illness is an irreversible and incurable illness or condition from which the medical expectation is death. The federal definition of “terminally ill” is defined as a prognosis of six months or less, which triggers Medicare of Medicaid expense reimbursement for the patient’s hospice care.
Q: Do patients have the right to refuse or withdraw treatment?
Yes. A decision to withhold or withdraw life-sustaining treatment is a common feature of medical practice when caring for people who are approaching the end of life. It means the removal of a treatment that was started in an attempt to sustain life. Patients and health care agents may make a decision to stop treatments when they are no long working to sustain life, or when prolonging life is no longer the primary goal due to a marked decrease in quality of life. Some common treatments that may be withdrawn as patients nears death include mechanical ventilation, artificial nutrition, defibrillators and chemotherapy. Withdrawal of life sustaining treatments goes hand in hand with introducing and continuing with treatments and other supports to assure comfort as the patient dies.
Q: What is the right to die?
The right to die typically refers to a patient’s right to refuse life sustaining treatments. The right to die movement preceded the death with dignity movement as a result of well-known cases of patients who were in a long term coma, and whose families fought for the right to remove life support systems.
Q: What is palliative sedation?
Palliative sedation is the continuous administration of medication to relieve severe, intractable symptoms when all other treatment interventions have been exhausted. The intention is to relieve suffering and not to hasten death.
Q: What is VSED - Voluntary Stopping of Eating and Drinking?
VSED is the conscious stopping of all eating and drinking in order to hasten death. This procedure is one of several options for those facing unbearable suffering. VSED is gaining in popularity and acceptance as a method of hastening death because the process seems more natural, especially when considering patients nearing death naturally lose their desire to eat and drink. Studies have reported that aside from initial thirst, which can be managed, the resulting death takes two weeks or less, and with active support and symptom management, can be a peaceful one. VSED may be more distressing for the family and loved ones than it is for the patient, who often lapses into a coma-like state following several days without fluids. Hospice and palliative care can be arranged to support a patient and family through VSED.