Major Improvements to the End of Life Option Act

EOLCCA is thrilled to share the long-awaited news that yesterday, October 5, Governor Gavin Newsom signed Senate Bill 380.  This new law makes some badly needed adjustments to the existing End of Life Option Act in California, which was signed into law exactly 6 years ago on that very date by then Governor Jerry Brown.

These new provisions will become effective on January 1, 2022. Here is what will be different for anyone seeking Medical Aid in Dying in California in less than three months from now.

  • The new bill reduces the onerous 15-day waiting period between the required two oral requests, to 48 hours.  This is a big change and will help many people access the law who couldn’t previously.
  • Healthcare systems and hospices will now have to post their aid-in-dying policies on their websites. This will be extremely helpful in guiding people as to where they choose to receive their healthcare, especially if they are very sick or terminally ill and wish to request medical aid in dying.
  • The final attestation form will be completely eliminated.  This was a document that the patient was expected to fill out and sign within 48 hours prior to taking aid-in-dying medication.
  • If a terminally ill patient requests medical aid in dying and their physician does not wish to participate, the physician will be required to tell the patient they will not support them.  AND, the physician must document the request in the patient’s medical record and transfer the patient’s medical records upon request.
  • The amendment also clarifies that medical aid in dying medication can be taken within a healthcare facility.

We applaud Senator Susan Eggman for her dedicated leadership on this important issue and all California lawmakers who voted for this new measure, as well as Governor Newsom for signing this amendment into law.

Advance Care Planning and the Role of Hospice

“The peace of mind that results from that rich conversation improves the mental and social well-being of patients and reassures them that their family won’t experience the suffering of not knowing what they would have wanted if they became unable to participate in their own decision-making.”

Stephanie Anderson, M.D., executive director of Respecting Choices

Dear Readers,

We are pleased to share new research by the Coalition to Transform Advanced Care (C-TAC)  described in the latest issue of Hospice News which very clearly underscores the value of Advance Health Care Planning.  “This report identifies several key practices that can be used to promote advance care planning across the country and ensure that people receive the care they want in the setting that is right for them,” said C-TAC Executive Director Jon Broyles.  (Read the full C-TAC report here on their website.)

Supporting and educating people about Advance Care Planning is also the foundation of End of Life Choices California’s (EOLCCA) work as a clearinghouse for information on all end of life (EOL) options, including medical aid in dying here in California.  We know and appreciate that hospices are on the front line of EOL care for the terminally ill.  That is why EOLCCA volunteer trainers focus on reaching out to and providing specialized education programs for hospice staff throughout California.  

Advice for Future Corpses
In-Service Training

During an EOLCCA hospice in-service, we discuss all legal end of life options and the critical role Advance Care Planning plays in the quality of a patient’s end of life care.

Our in-services contribute to a hospice’s more informed approach and a greater sensitivity to the end of life choices their patients wish to make. We are especially pleased to see some hospices now encouraging their patients to move forward in their advance care planning.  Since EOLCCA’s inception, our trainers have provided 17 hospice in-services.

In light of Covid-19, we have adapted these trainings to a successful video conference format, making it possible to offer them throughout the state, from Crescent City in the north to El Centro in the south. We have observed a more proactive response from hospice staff we have trained in interactions with their patients, and we continue to be a resource to all those trained.  A silver lining of this terrible Covid pandemic, is that we can offer this distanced learning to all.

Please let your own hospice, medical, and caregiver networks know that EOLCCA is available to provide similar virtual training sessions, at no charge, about ACP and all end of life options. To request a presentation please call 760-636-8009 or complete this form on our website.  Thank you.

COVID-19 and MAID

This KQED (San Francisco) story by April Dembosky offers a wealth of
accurate information for anyone thinking about using the California
End of Life Option Act (EOLOA) to access MedicalA id In Dying (MAID). 

The story is a concise discussion for those terminally-ill Californians who would qualify for the law right now, irrespective of the current pandemic.

And finally, for those seeking a physician willing to prescribe aid in dying medication, this piece tells us there is a growing number of doctors in California available for this end-of-life choice.

You can read or listen to the story here.

 

a child's delightful oil painting of a clown with a blue hat and a red ball on top.

Dr. Lonny Shavelson  (Beth LaBerge/KQED)

Note to our Readers:

EOLCCA volunteers are continuing to respond to terminally-ill individuals and their families who call us for information and personal support around their end of life options. This pandemic continues to change so much in all our lives.  But those who call EOLCCA are suffering from cancers, neurodegenerative diseases, COPD, heart failure, etc. with a 6 month life expectancy, or less.  And they are looking for compassionate physicians who will prescribe aid in dying medication, like Dr. Shavelson.  Fortunately, there is a growing number of like-minded, empathic physicians throughout the state.  Have you had this discussion with your doctor?

Please call  760-636-8009 to speak to an EOLCCA volunteer or email info@endoflifechoicesca.org. We are here to help.

Barriers Persist in California and Elsewhere

The barriers to using medical aid in dying remain so high that in one state, pharmacists are fighting back and helping terminally-ill individuals find physicians willing to help. 

We know this because of a recent Kaiser Health News story by JoNel Aleccia. Aleccia is the same reporter who covered the first article about the Colorado physician, Dr. Barbara Morris, who was fired last August 2019 by her employer, Centura Health Corp.  Centura, a Catholic and Seventh-Day Adventist-run health care system, fired Dr. Morris for agreeing to prescribe life-ending medication to her terminally-ill, End of Life Option Act eligible patient, Neil Mahoney. We highlighted that story in our September 3 blog Barriers to Medical Aid in Dying Even When it is Legal.  Not only did Dr. Morris lose her job, she lost care of her patient, her office, and her malpractice insurance.

Aleccia wanted to know what happened to the patient, Neil Mahoney?  What happened to Dr. Morris? She takes us to Golden, Colorado where Mahoney and Dr. Morris filed a lawsuit; the case is pending.  Due to his declining health, Mahoney had to leave the suit, but was able to gain access to his state’s medical aid-in-dying law thanks to a pharmacist who reached out to him as part of “a network that quietly connects terminally-ill patients in Colorado with doctors willing to follow the law”.  

This compassionate group is called Dying with Dignity of the Rockies, Aleccia informs us.  We know of at least two pharmacists in California who fill aid-in-dying prescriptions who have indicated they are only too happy to match patients with physicians they know are willing to help.  

As Colorado pharmacist Rodney Diffendaffer points out, there are many doctors willing to help, but they don’t want their names on a public list.  California physicians feel the same, and we understand and respect that. He also points out that it is the patient’s choice to have the aid-in-dying drugs; no one else should have a say. 

The lack of physicians willing to prescribe medical aid in dying due to pressure from employers is just one of the many barriers that persist in California as in Colorado and the other states.  This reluctance may be based on religious or moral reasons, or fear of being fired or of censure by their employers or colleagues. Whatever the reason, as Dr. Morris said, “medical-aid-in-dying should be part of a continuum of care for dying patients”.  We agree with her wholeheartedly.

By late September, and thanks to a Colorado physician who had prescribed MAID only once before, Neil Mahoney had his medication in hand. Neil expressed great relief.  Now he was back in control of his living while dying, and had many plans to make: who will care for his dog, his cat, and what about his other belongings, while planning how to say goodbye to friends and loved ones. Neil took his life-ending medication after he became more frail, but while still able to swallow, a requirement under the law.  He took his medication on the evening of November 5, surrounded by his large and supportive Catholic family. He fell into a deep sleep and died an hour later, peacefully, as was his wish. 

What about Dr. Morris?  Her suit is pending in the courts, and she has found another place to practice medicine. When notified of Neil’s peaceful death, she was grateful he had found a way to access the law while also regretful that the religious bias of her former employer had prevented her from helping him. She went on to say that as a memorial to Neil she, and physicians and pharmacists like her “will continue to advocate for care focused on patient values and wishes.”

The Colorado physician who prescribed medical aid in dying for Neil stated that it is her job to relieve pain and suffering and to inform her patients of all the choices in dying available to them. 

This continues to be the mission and work of End of Life Choices California: informing Californians of all their end of life choices.  If you would like to help us carry on this mission, please make a donation here or complete a volunteer application here – or do both!  We need volunteers well placed throughout this massive state of nearly 40,000,000 people. 

A special thank you to JoNel Aleccia for her factually correct, excellent reporting on this important issue!

 

If you would like to support the mission of End of Life Choices California,
please click below and learn more about our funding needs.
Thank you!

Barriers to Medical Aid in Dying even when it is legal

A recent story about the firing of Dr. Barbara Morris, a courageous geriatric physician in Colorado who went to court to fight for the right of her patient to use the state’s medical aid-in-dying law, is yet another warning for those of us in California and other states who are working hard to lift the barriers to compassionate and timely access to medical aid in dying (MAID) for the terminally ill.

This latest incident, involving a physician who independently chose to prescribe medical aid-in-dying for her patient and as a result was fired from her job with a jointly run Catholic/Seventh-day Adventist hospital system opposed to MAID, is as unfortunate as what recently occurred in New Jersey where a single Orthodox Jewish physician had the power to temporarily stop the law from going into effect because of his personal faith-based beliefs.  

We have no wish to comment on religious preferences or practices, however, we believe that such barriers to health care do not belong in a democratic and compassionate society such as ours.  New Jersey Assemblyman John Burzichelli, one of the law’s sponsors, speaks directly to our concern when he says: “I have my beliefs, you have your beliefs, but don’t use the machinery of government to impose them on others.”    

Enough barriers are already built into the system.

The physical and emotional barriers most terminally ill individuals face in accessing medical-aid in-dying in California and other states that have adopted a law are already burdensome enough: family members opposed due to their own beliefs; physicians who have often been treating the patient for years and refuse to prescribe based on their own beliefs; hospices, social workers and health care providers opposed to MAID that won’t even inform a patient of their right to request the medication nor give the patient a referral to a health care provider who is willing to prescribe as stipulated in the law.  Moreover, the process to request MAID in California is lengthy and daunting, including a wait time of a minimum 15 days, which every individual, sick and debilitated as he/she is, must go through who wishes to ease their end-stage suffering with medical aid-in-dying. Oregon just wisely corrected this stipulation and those who are very near death can now access the law in a shorter period of time.

Are you a compassionate physician?

End of Life Choices California was founded on a belief system and mission: to enable those who face end of life situations to have access to ALL the information available and a support-system to make informed decisions about how they wish to die, including the option of medical aid-in-dying.  

We continue to search for more physicians throughout California to whom terminally-ill individuals can turn for compassionate care, understanding, and support of whatever end of life option they choose, including medical aid-in-dying if they qualify under the law.

If you are one of those compassionate physicians or a medical provider of any kind, we would love to know about you so that as we get calls and emails from people who need help accessing the California End of Life Option Act we can reach out to you and see if our client would be an appropriate referral.  In addition, if any of you, our readers, have had a positive experience with a doctor or hospice about end-of-life choice, and would like to share your story with us, we would be very grateful to hear from you. Ways to contact EOLCCA.  Thank you!

When You Don’t Have Access to Medical Aid in Dying…

As of Tuesday, August 27, an appeals court in New Jersey overturned the restraining order mentioned in this post, which halted New Jersey’s “Aid in Dying” law, now making it lawful for terminally ill individuals to request a prescription from their physician to end their lives.  This is great news!

This post, originally written with New Jersey’s law still in limbo, presents pertinent information regarding another end-of-life option for a peaceful death, should medical aid in dying either not be available or the 15-day wait process not be realistic.  

This news story was posted on August 23, 2019 and is a very sad, but important, read.  It explains why having access to life-ending medication for an individual with a terminal disease needs to be a viable, accessible option for all decisionally capable adults.  It is so sad that this woman in New Jersey, where a death with dignity law was just passed, cannot fulfill her wish to obtain the medication promised to her by her physician, in accordance with the new law, because one person is contesting the law and it is now “on hold” until it goes through the legal process.  

I wish End of Life Choices California could reach across the country and help her.  Perhaps this blog will find it’s way to her and her husband.  Because the truth is, there is more than one way to achieve a lawful, peaceful death in the face of an agonizing and incurable illness.  If Katie were in California and called us, one of our trained volunteers would meet with her and her husband to discuss her situation and all legal end-of-life-options.  We would explain that without medical aid in dying available, she might want to know more about using Voluntarily Stopping Eating and Drinking (VSED) as an option. Many people shrink back from this idea often because of a misunderstanding about the actual process and what it entails, even though it can result in a peaceful death.

Voluntarily stopping eating and drinking is the legal right of any person anywhere. There is no law that states you have to eat and drink fluids to stay alive.  That being said, it is absolutely NOT for everyone. And the best scenario of its use is for those unfortunate people who have arrived at a place in their lives where they find that the burdens of living with a terminal or painful disease far outweigh the benefits of living: when they have lost all control over their life, are suffering from intractable pain and know there is no hope of recovery.  

 It takes a strong and dedicated decision by an adult to choose to stop ALL food and ALL fluids.  It is not starving oneself to death. It is stopping all forms of nourishment, including water and other fluids, that pushes the body into a dehydrated state that leads to the kidneys shutting down and results in a coma and death.  Depending on the strength of the person and the strength of their heart, it can take from five days to three weeks. Some people have described an almost euphoric state in going through this process. In a person weakened by disease, basically bed-bound and already at a much lower weight than is usual for them due to their  illness, it is a shorter rather than longer process. But they have to be determined through the early symptoms of hunger and thirst which eventually pass.

At End of Life Choices California, when supporting a person choosing VSED, we always suggest the person and their caregiving team have their physician on board to prescribe hospice care for them if they are not already on hospice.  A person pursuing VSED can benefit from medical support with gentle anti-anxiety medication and other clinical practices to ease their symptoms, and hospice nurses are excellent in providing oral care to alleviate dry mouth and lips.  A simple swab of coconut or some other oil does the trick. Quiet favorite music, aromatherapy, massage and careful medical support all can contribute to achieving a peaceful death. 

Even though the California End of Life Option Act has made medical aid in dying available to terminally ill, decisionally capable adults, not all those individuals who wish to obtain it will be able to or they may run out of time trying to find doctors who will participate in their medical wishes.  At End of Life Choices California, we discuss all end-of-life options with our clients, as well as support them in their effort to access medical aid in dying or VSED even when the barriers seem overwhelming. We provide factual information and personal support.  You can find many resources and learn more about our services on our website.  If you are interested in learning more about VSED, feel free to give us a call, or go to this page on our website and read more.