Responses to Remaining Questions from Panel Discussion
Answered by Judith Schwarz, PhD

General

Q1. Is there any data on cultural breakdown of populations using VSED?
A: None that I am aware of.

Hospice

Q2. In New York, can patients qualify for hospice once they have started the process?
A: We are not able to generalize a response as it so depends upon the hospice’s policies and the nature of the patient’s illness…if they are terminally ill – no question about hospice support for VSED. Persons always need a physician’s referral for hospice, and because it’s generally a government provided & paid for service (through Medicare). There are therefore enrollment requirements. IF a patient begins to VSED before hospice, the family can then call the primary care MD & ask for a referral given that their loved one has just given up, stopped fighting, & they need help caring for him/her.

Q3. How do you find a hospice to work with you in VSED?
A: Family can always do online research to locate hospices in their area & call/ask for an assessment for eligibility. You can also ask your primary care doctor. If your doctor is reluctant to refer you to hospice, you can contact a hospice directly. In this case, the hospice can do an in-home assessment and if they believe you are eligible. they may contact your primary care doctor to get a referral. If your primary care doctor does not agree to refer you, in some cases a hospice physician may accept you as their patient directly.

Q4. Are hospices transparent regarding their positions pertaining to VSED?
A: It depends upon the hospice. Some are beginning to develop policies & guidelines re eligibility and staff responsibilities regarding how to respond…this is to be applauded. When possible, one should enquire before becoming enrolled.

Q5. Do hospices generally accept VSED and effectively support patients who choose it?
A: If the patient is terminally ill & chooses VSED – MOST are fine with supporting that choice. However, some hospices with religious affiliations may be reluctant to support such a decision. When possible, one should enquire before becoming enrolled.

Caregivers

Q6. How do caregivers evaluate a patient’s change of mind during the process, when the patient said at the beginning that if he demands food during the process not to honor it?
A: The response must be based upon a determination of the patient’s decisional capacity to ‘change’ his/her mind. It is almost always the case that, as the patient enters the stage of organ failure, capacity is lost & the patient can no longer make an informed decision. This must be discussed prior to the initiation of VSED so patient can inform family & caregivers of the desired response. The appointed health care agent should also be involved as a substitute decision-maker for the patient. The ideal response is to provide the smallest amount of oral intake of food/fluid in response to such requests to provide comfort AND increase the sedating medications.

Q7. What if you have no family to help out?
A: Anyone, including friends, can provided support as long as they know your wishes. Increasingly, end of life doulas are available for hire…and can help advocate for the patient’s choices. Caregivers who will support the hand feeding limitations can also be hired.

Process & Symptom Management

Q8. Can a person refuse only food and not water and have it still be VSED. And would dying just take a little longer?
A: A person who wants to hasten death by VSED must understand that death is caused by dehydration, not starvation. People can live a very long time if they continue to drink, even if they stop eating.

Q9. How is the agony of hunger and thirst palliated during VSED?
A: I would not use the term ‘agony’ to describe the symptoms associated with VSED. Hunger pangs tend to diminish after couple of days. No question that sensation of thirst or a dry mouth can be distressing but, basic good oral care can minimize such symptoms along with the use of small amounts of oral opiates and sedatives.

Q10. How can dry mouth be addressed, and are there ways to do this without using liquid?
A: While patient still alert & able to cooperate: frequent rinsing & spitting cool water; careful tooth brushing & keeping tongue & gums uncoated…use damp wash cloth over finger, gargle & spit mouth wash, put damp wash cloth in freezer for patient to suck on; spray fine misted water at back of mouth

Q11. What is “better” about VSED if clinical care to manage inevitable extreme suffering is not available?
A: People have been dying this way for generations…and, as a rule, ‘extreme suffering’ is not a consequence of this option to hasten dying. No question, not for everyone but the simple measures to relieve the distress of a dry mouth are very effective…along with psychosocial support from family & caregivers. This option is only appropriate for those who have concluded that, continuing to live with the burdens imposed upon them by their various chronic ailments has become intolerable and unbearable. VSED is often chosen simply because there is no other legal option available to control the timing of one’s death.

Advance Directives to Stop Eating and Drinking

Q12. If a patient has already established in their advance directive their desire to VSED while competent, why might a healthcare professional begin to offer them food or drink when they now lack capacity?
A: This happens when the patient seems to indicate a desire for food or drink. It is very hard for family members to ignore a loved one’s possible feeling of hunger or thirst. So, by providing the least amount of oral intake as a means to provide comfort, even if the dying is slightly prolonged, the patient is kept comfortable during the process of dying.

Q13. There are several dementia directives available, how do they differ and how should someone decide which to complete (e.g. geographic location, etc.)?
A: There are indeed a number of these documents available for use & or to compare. They are described in some detail in the appendices of the text book that can be found here.

Q14. Can wishes regarding stopping eating & drinking be documented in other advance directives or should a specific form for this be used?
A: They can be documented in other directives and the health care agent/proxy should be well-versed re this choice, copies made & provided to all family members, caregivers AND the primary care clinician.

Q15. Are wishes regarding stopping eating & drinking commonly documented in advance directives?
A: No. This is a fairly new type of directive.

Professional Challenges/Opportunities

Q16. Can you speak to the benefit of the Death Doula role in this?
A: I have recently begun to collaborate with doulas in the care of their clients. They often call with specific questions about VSED, and pros/cons of advance directives to stop eating and drinking, which I am happy to answer. Those with whom I have interacted seem to provide a wonderful service to their clients.

Q17. How do professional caregivers (for example hospice staff) get training for attending to VSED folks?
A: There is certainly a lot of very useful, practical clinical information in our book about VSED and there is also information online (though one must be careful about checking sources.) There is also quite a lot of information on our website – including a video recording of a talk I gave with an attorney colleague about VSED. You might have your hospice administrators ask clinical experts to provide some in-service education.

Q18. What are the best ways to approach institutional partners re VSED (e.g., aged care, nursing and care homes)?
A: That is a very challenging issue. However, so long as the patient is decisionally-capable, they have an absolute legal right to refuse ANY intervention, including life-prolonging measures. Ask for an ethics consult and explore a risk management approach.