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In the News

Recent Events

David Leven, Executive Director Emeritus and Senior Consultant for EOLCNY, was recently interviewed on Healthcenters in the Catskills, a radio program focusing on the impact of local, state and national issues. David spoke about medical aid in dying and the current lawsuit trying to stop the law from being implemented. The sound is not optimal, but the information is important! Take a listen here.

End Notes

Updates

Volunteer Spotlight: Ruven Liebhaber
Supporting Patients Contemplating MAID and VSED

I have been a hospice volunteer for 25 years, sitting with patients in hospice house settings. Surprisingly, I had not heard of VSED (Voluntary Stopping Eating and Drinking) until I learned about it a year ago from a patient who chose to shorten his dying by VSED. The experience gave me an up close and intimate glimpse of what is involved for the patient, the family and the staff. VSED is coming increasingly into public awareness as a means for patients to take control of their dying process. And MAID (Medical Aid in Dying) will be available in New York State starting on August 5, thanks in significant part to its championing by EOLCNY. My inquisitiveness and dedication to end-of-life quality prompted me to learn more about these end-of-life choices and to identify challenges and potential service gaps.

Individuals who will choose MAiD or VSED are having to navigate a difficult time. They will need support in having their goals, values and choices fulfilled, whether at home or in a facility setting. Staying current with the patient’s preferences, needs and resolve is key, as their abilities may be changing. The team of helpers need to be aligned with and supportive of the patient’s wishes. Some of the many other aspects and considerations that the patient may need assistance with include: updating advance directives and medical orders for life sustaining treatment (MOLST) to be compatible with MAID and VSED; seeking out medical consultation for MAID qualification; procuring supplies for home care; volunteer presence in sitting vigil and providing respite for the family.

The patient that I accompanied was very focused on his goal of VSED to end his suffering. He said that the extreme challenge was the matching of his will to his intention. There were starts and stops, causing confusion among the staff who were new to VSED. As a hospice volunteer I summoned my practice to be a compassionate companion, simply being a loving presence, and reflecting back as the patient voiced concerns. “How can I help?” was and continues to be answered by the
collaborative effort in the shared purpose of serving the end-of-life wishes of the patient.

Ruven’s engagement with hospice began when, as an architect, he was commissioned to guide a hospice agency through the process of developing a residence. In order to understand the hospice world he thought it would be beneficial to train to be a volunteer. He soon discovered that the holistic approach of hospice, and his approach to architecture and life, were beautifully aligned. For twenty years since, he served weekly in hospice residences in the Boston area, and now in upstate New York. Ruven has led hospice volunteer workshops and started a monthly hospice poetry group which has been meeting monthly for over a decade. Professionally, Ruven authored two manuals for the development of hospice residential and inpatient unit facilities, and has consulted nationwide. His training certifications include court mediation, nursing home ombudsman, guardianship and restorative justice.

End-of-life issues are a magnet of interest and involvement for Ruven. His service work in hospice is a source of deep fulfillment. The hospice residence is his second home, where he feels a deep bond with the caregiving team and in service to patients. Ruven is also an avid natureworker, poet / writer, and abstract acrylic painter. He and his wife, Gail, live in Rhinebeck, close to family, including two beloved grandchildren.

Update on Medical Aid in Dying Implementation

With 35 days until Implementation Day, we continue to work with clinicians and others across the state to be ready. We are looking for physicians in private practice who are interested in learning more about providing aid-in-dying care. And we need your help to find them! Do you have an appointment in the next few weeks with a cardiologist, oncologist, neurologist, primary care doctor or someone else who could potential provide care at the end of life? Share this flyer with them or ask if they’d be open to a conversation about medical aid in dying with End of Life Choices New York and The Academy of Aid-in-Dying Medicine. We would be happy to schedule a call to introduce them to the practice and provide resources for them to feel competent and capable to practice in this area.

We now have at least three pharmacies across the state that have agreed to provide the prescriptions for medical aid in dying, but are also looking for more. These prescriptions are compounded and provided in a powdered form that the patient or caregiver then mixes with a liquid for the patient to drink. If you need assistance picking up the medications, preparing them or paying for them, please reach out to us for assistance. And if you work with a compounding pharmacy, please share the flyer as well.

The Department of Health has issued their proposed regulations on medical aid in dying, attached here. There is currently an open comment period that will end on August 3, two days prior to Implemention Day on August 5th.

We continue to speak to patients who are interested in considering medical aid in dying and have already begun connecting them to physicians to pre-plan as much as they can which receiving quality care. We have also been able to connect patients with family members of people who used medical aid in dying in other states, so they can begin to learn what the process was generally like (although it will be slightly different in each state) and ask questions that only family and friends will be able to answer. We are honored to be able to coordinate this part of the process. If you are in need, please reach out to us! If you are a clinician of any sort (doctor, nurse, social worker, chaplain, pharmacist, volunteer, doula, or hospital/hospice system), please complete this survey. The answers to this survey will not be made public but will allow us to reach out to you to offer you the opportunity to connect with patients based on their needs. This survey has informed us already that we have strong interest from all sorts of clinicians in providing this care, including pharmacists, doctors, psychologists and end of life doulas.

Please continue to share the flyer highlighting our partnership with the Academy of Aid-in-Dying Medicine with anyone you think could benefit from resources and education. Together with The Academy, we are your go-to source for all things related to the implementation of excellent aid-in-dying care. Please reach out to us with questions, concerns and needs.

If you learn of trainings in your community, please forward them to us so we can reach out and let them know about the support we can provide. We are thrilled that we have been seeing trainings popping up and we want to support any organization to provide the best quality care possible.

We continue to receive many requests by major media outlets to interview people who are considering this option when it becomes available. This is an important way we can use the media to bring more awareness about this option. If you have been diagnosed with a terminal illness and will likely be eligible to use medical aid in dying in the next 6-12 months, and you’d be willing to talk to the media either in print or on TV, please let me know. I can put you in touch with very sensitive reporters and producers who want to help share your story in a compassionate and dignified manner.