How to Die in California

This video starts out with clips from “A Dance with Death, The Final Days of Kelly Johnson,” a 75 year old San Francisco resident who took advantage of California’s End of Life Option Act using a combination of drugs.

At 15:49 Chaplin Richard Beeman explains what California’s end of life option act means.
He asks what the mortality rate is in California. He explains that many younger people do not “get” that the rate is 100%.
He asks the provocative question: How would you like to die?
He talks about hospice, palliative care, voluntarily stopping eating and drinking and California’s End of Life Option Act.

At 38:44 Wendell Stephenson, Ph.D. describes the work of the Final Exit Network, based on Derek Humphry’s work.

At 57:23 AnnMarie Olson, LCSW ACHP-SW who works with terminal patients at her job in Hospice by the Bay. She has been working with patients at end of life for the past 13 years. She states that her hospice has a completely neutral stance on the End of Life Option Act. There is a “don’t ask, don’t tell” policy. Patients must ASK for information on the End of Life Option Act. This hospice does not participate and will not pay for the drugs used. The staff is not permitted to participate in the Act; their job is to “hold the space,” for people – to promote a calm environment. She encourages people who say things like “I wish there was a pill…” to say exactly those words to their primary care physician. She encourages patients to state, early in the process, at what point they would consider life no longer worth living. She then asks patients, when they reach that stage, how they feel. She notes that people often change their minds when they reach that stage.

1:10:37 – Thalia DeWolf, RN, certified hospice and palliative care and nurse. She is a clinical care coordinator with Bay Area End-of-Life Options founded by Lonny Shavelson, MD. They do NOT advocate for medical aid in dying. They do want to improve access and care for patients who ask for medical aid in dying. The first step when someone calls them for medical aid in dying is to assist in finding a willing doctor. Thalia states that many doctors do not necessarily have a moral objection to aid in dying, but are fearful because they have not been trained to do it.

Their practice received 1000 inquiries as of March 15, 2019. Of those, 145 of them died of medically assisted dying, with their staff at their bedside. 65 died within the 15-day legally mandated waiting period – their autonomy was not respected.

She talks about voluntarily stopping eating and drinking – VSED and states that if your organs are in good shape, it is very difficult to die by this method.

She relates a case of a 92-year old patient who tried VSED twice -before the End of Life Option Act was passed – and failed. The woman then drank the entire bottle of morphine that had been given to her by hospice. She slept for 3 days straight, and then woke up.

She talks about the difficulty of waiting too long to ask for medical aid in dying. Essentially, you have to see the doctor, you wait for a week to get the appointment, then you have to see the social worker, another week before you get an appointment, etc. All these time periods add up.

Thalia notes that the first request for medical aid in dying can be made over the phone.
She notes that it is not enough to make the request; one needs to make clear that the request is to be put in your medical record and signed by the doctor. She notes that most skilled nursing facilities have opted out.

Questions:

1:45:15 – Palliative Sedation – May result in dehydration. Is not considered euthanasia, it is considered the extension of palliative care.
1:46:25 – Final Exit Network (FEN) requirements regarding mental deterioration? FEN works only with people that are mentally competent. They may work with people with Alzheimer’s, but they must be mentally competent at the time they work with them and at the time they choose to end their lives.
1:47:30 – Finances. Hospice care is covered under Medicare. Medical aid in dying generally is not covered by insurance, although the Kaiser system is supportive. The drug cocktail cost about $650. Seconal is no longer available. Bay Area End of Life Services is $3000. They do pro-bono cases for those in need. Palliative care is generally covered by insurance.
1:49:00 – Hospice benefit – if you’ve been on hospice for a long time (12 months or more), is it safe to say you are not dying and should you just go and live your life ? Even if they are dying, they should go about their life as much as possible. Hospice patients are looked at regularly to see if they are still eligible for hospice – a doctor’s “best guess”. If they do get re-certified, they can continue on hospice. If they don’t, Bay Area Hospice discharges to their home, checks in with them regularly and recommends that they check back in with their doctor.
1:50:19 – How can a 90 year old senior with dementia be helped “to dream?” She uses a feeding tube, has pain. How can we know her wishes? The whole issue of dementia is hugely problematic. The need for an advance directive cannot be stressed strongly enough. You need to address dementia in your advance directive while you are cognitively able – state that you do not want to receive nutritional support at all. Still, it is up to the person with dementia to say no to food and hydration.
You cannot put “medical aid in dying” in any of your advance directives. When you are terminal with Alzheimer’s, you do not have legal capacity, so you are no longer eligible for medical aid in dying.
1:52:33 – Are there residential hospices now that Zen Hospice has closed? Questioner is aware of Laguna Honda. Is there anything smaller? Yes. Others are: Coming Home Hospice in the Castro and Maitri – it was primarily for people with HIV; it is more of a “tune-up” facility now that people are not dying of HIV at the same rate, but it is still considered a hospice residential setting.
1:53:15 – What is the process and time frame for Final Exit Network support? Once they apply, within a month or so. The time frame can vary. FEN attempts to return calls within 24-hours If you are interested in getting into the exit guide program you are required to provide medical records to the medical evaluation team; a team of 3 or 4 people who evaluate your medical situation and determine whether you meet the FEN criteria. That can take a take 1 or 2 weeks. After you are accepted, then you will be assigned a guide. That is a very fast process – probably no more than a day or two. The guides will notify you. It is up to you how fast you want it to go after that.
1:55:34 – Palliative Sedation, statement from a clinician in the field: We love the idea of palliative sedation, but in practice, it does not happen very often. If your symptoms can be controlled at home with medication, you don’t need palliative sedation. These drugs can be given by family at home. The only people who get it are people whose symptoms cannot be controlled any other way. She has seen it happen twice in 10 years. She advises: if you get into hospice care, have the conversation with your case manger about what you want for the active dying-the end stage – not the earlier part.
1:57:54 – What kind of education to emergency responders have to check for POLSTS? It is important to understand that everyone should have an advance directive, but EMTS are not going to take the time to go looking for advance directives. A Physician Order for Life Sustaining Treatment (POLST) is a legal one-page form, bright pink. (It must be signed by a medical professional to be valid). EMTS are trained to look for these – on the refrigerator in private homes. In retirement homes it is often on the back of the front door. An audience member asks a question about do-not-resuscitate orders. Thalia (?) answers that training is one thing, but there are cases of reluctance on the part of EMT’s to depart from standard operating procedure.
2:01:27 – Are there initiatives to broaden the eligibility for legal medical aid in dying? And, what are the odds of such legislation passing? Rick on the odds: incredibly difficult to get legislation through anywhere because of the concerns of the handicapped community. Their biggest fear is the slippery slope. Rick is an advocate for better diagnosis. Many are what he considers to be “sentenced to life,” because they are without a terminal condition and seem to be “too healthy.” There is a term that has Stanford backing, it is “Advanced Senescence” (old age). There is a Karnofsky Scale- that allows you to say this is the process and this is the level of inability that we need to look at that allows you to say yes, this is advanced senescence.
There is a bill that just passed the Oregon house that seeks to broaden the definition of ingestion to include IV methods or through a syringe. (editors note: it failed to pass) Currently the law only allows self-administration. Thalia notes – also through PEG tube or rectally – it must touch the GI tract. Thalia states her belief that if anything needs to change in the law, it is the 15-day waiting period. She also believes that there needs to be a place whee doctors can come together and discuss these cases. Someone mentioned C&C’s doc-to-doc service. Thalia says she loves Dr. David Grube, but there needs to be more than one person. She wants to see a group, including social workers, and people in the field, doing this medicine.

This video is from the San Francisco Public Library. Recorded May 7, 2019