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Starts 2:11 Dr. Karl Steinberg is a board-‐certified family physician with a subspecialty certification in hospice and palliative medicine, and certifications as skilled nursing facility and hospice medical director. He has been a hospice and nursing home medical director since 1995 and is probably best known for taking his dogs on rounds in nursing homes, assisted living facilities, and on hospice and palliative care home visits.
Dr. Steinberg states that he is not aware of any long‐term facility in the San Diego where residents have been able to ingest a medical aid in dying drug in a facility. The state mandated reports do indicate that a small number of people have been able to ingest in an assisted-‐living residence or nursing home.
He believes the reason so few long-‐term care facilities allow it is because they are afraid of loosing Federal funding due to a 1997 federal law. It is the same law that stops facilities from administering cannabis to their patients.
He sees people voluntarily stopping eating and drinking often and reports that it does not appear to be a difficult death.
There are medications that help during the beginning, more difficult days.
He notes that AMDA-the society for post-‐acute and long-‐term care ethics committee white paper, Stopping Eating and Drinking by Advance Directives (SED by AD) in the ALF and PALTC Setting (March, 2019) recommends their members NOT follow the wishes in these advance directives for those patients who still accept food and fluids, and recommended implementing comfort feeding for those with advanced dementia.
starts at 25:44 Kristin Rigsbee-Long-‐Term Care Ombudsman Trainer and Development Specialist¬Aging and Independent Services County of San Diego Long-‐Term Care Ombudsman Program.¬ Kristin worked for over 20 years in a skilled nursing facility and managed two memory care units. Kristin explained that the ombudsman program is a federally mandated program (throughout the U.S.) and administered in California by the state. In San Diego, the program is housed by the County.
Volunteer ombudsmen are trained and mandated to represent the rights of the long-term care resident, not the family, not the facility. If a resident lacks legal capacity and has arranged for a power of attorney, consent to be represented comes through the designated proxy.
If you are in a long-term care facility and you do not want to eat/drink, the ombudsman will support that. It is important to remember that the facility will likely consider this a problem as they are mandated to offer nutrition and hydration. ‘
There are ways to address it where it is not so much a liability to the facility.
All long-term care facilities should have a poster with information on them letting residents know how to contact the ombudsman.
Things an ombudsman can help with and a partial list of patient’s rights:
Start 42:23 Bill Simmons, Business Attorney, former HSSD board member with strong interest in advance directives and the especially important part: family conversations about end-‐of-‐life wishes. Bill is a former hospice volunteer and founder of the FinalExodus.org website.
Bill opened with a riddle: What can I do myself, but if others help me, it is a crime?
(answer at bottom).
Bill stressed that you should choose your health care agent carefully. You need a responsible person who will fight for your wishes-not what they would do if they were in your situation. The inverse is also true. It is a grave responsibility to be a health care agent for another person.
Bill presented hypothetical situations and discussed how the situations might play out.
Here is one such scenario:
A person chooses you, his best friend as his agent. He has children from a prior marriage.
Under the Advance Directive, your friend states circumstances under which he wants all life-sustaining care stopped.
The circumstances arise. The children fly in and start arguing about what is best for their father, not withstanding his clear advance directive.
You, as agent, tell the doctors to pull the plug, but some of the children tell the doctor to keep him alive as long as possible. The Doctor and the hospital decide to not pull the plug. You again tell the doctor and the hospital to pull the plug, and the hospital’s ethics committee supports you. One of the children then threatens to sue you unless you change the order.
Sound bizarre? Yes, but doctors tell Bill situations like this do happen.
A dementia scenario:
Long before her dementia was discovered, Pam executed an Advance Directive to which she attached an Advance Directive for Dementia. In it she made it very clear that if she got dementia and lived past the point at which she lost capacity, she wanted to live until she didn’t recognize her family. At that point she directed her agent, her husband Alex, to move her home if in a care facility, and commence withholding food and fluid-‐that is, VSED, Voluntarily Stopping Eating and Drinking. She talked to their two children, to be sure they understood and would not interfere, and hopefully support her when the time came. Note, The Advance Directive says VSED is to be started and carried out by the agent after the principal’s mental capacity has been lost. Every few years she affirmed her ADVANCE DIRECTIVE in writing. She also gave a letter to her doctor in which she repeated her wishes as contained in the directive.
She did get dementia and stopped eating and drinking before she lost capacity. The children and her husband helped her in the process. Bill states no legal cases have been found where a prosecutor has pursued an agent when VSED was instituted by the patient who still had capacity.
If the woman started the process after losing legal capacity, had appropriate palliative care and was never in pain and never asked for food/water, there should be no problem, (in the opinion of some legal experts) because Pam’s wishes were so well documented. These experts views are contained in Dr. Stanley Terman’s book, The Best Way to Say Goodbye.
Additional details could sway the case to the other side-for instance, if the patient asked for food/water; or perhaps a nosey neighbor made a complaint to authorities.
The question comes up: If she asked for water/food, did she invalidate her advance directive (even though she had no legal capacity)?
Bill notes the importance of the fact that the patient repeatedly documented her wishes and made them known to health care providers.
He notes the courts require “clear and convincing evidence” of the patient’s intent. That’s a lot more than a preponderance. Some argue that it is a higher standard than beyond a reasonable doubt! The law books are full of cases where the court ruled against a stated wish because the court found it not to be sufficiently clear and convincing.
There was also a discussion of a rarely-recognized benefit of hospice: With hospice, if you die at home, there is no need for a coroner inquest; hospice will fill out the death certificate.
Not part of talk, but good resources:
American bar association:
State statutory Provisions Related to Orally Provided Food & Fluids and Comfort Care¬
Advance Directives – Selected characteristics – US state
Advance Directives for Dementia:
Nevada is the first state, with Nevada S.B. 121, to explicitly authorize advance directives for dementia. As of Oct. 1, 2019 people will be able to direct health care providers to stop hand feeding. Thad Pope, JD explained in a recent blog post that through reciprocity rules common in advance directive statues, these Nevada directives will be valid in California.
He notes that other perceived barriers remain for these directives to be effective. There are no developed protocols for when to start the process, for example and clinicians are uncertain whether they may or must honor an advance VSED directive.
This draft addendum to an advance directive covering cases of cognitive impairment was distributed at the meeting to provide an example of the type of wording one can include in their own advance directive. It was distributed at the meeting.
Riddle answer: suicide