It was only yesterday that we celebrated California’s new End of Life Option Act taking effect. Californians joined the residents of Oregon, Washington, and Vermont in having the option, should they be terminally ill with less than 6 months to live, to end their lives in a humane and dignified manner.
We expected what would happen next but it’s an outrage nonetheless: a group of physicians backed by anti-choice groups filed a lawsuit to stop the implementation of the new law.
Here they go again.
The plaintiffs are not merely doctors opposed to aid-in-dying—they are red-meat political operatives with a religious radical right agenda targeting LGBT Americans, a woman’s right to choose, and Death with Dignity.
We had expected the opponents of assisted dying in California would attempt to deny terminally ill patients access to expanded options at end-of-life. The good news is: We have beaten back similar lawsuit by opponents of Death with Dignity in both state and federal courts, which rejected all of these challenges. The Riverside County court should do the same.
Will you chip in $25 to help us fight this lawsuit against the California End of Life Option Act?
Participation in the law is voluntary. Physicians may refuse to take part for any reason. That includes the doctors who are plaintiffs in the lawsuit. If they wish not to participate, they are free to do so, but they should not deny the right to use the law to others.
We are dedicated to bringing the option of Death with Dignity to eligible terminally ill patients everywhere. We were a leading force in the defense of Oregon’s law, all the way to the Supreme Court of the United States. Having been implemented safely and flawlessly, the Oregon, Washington, and Vermont laws continue to provide peace of mind to terminally ill patients. With your support, we will make sure the California law will do the same.
Please chip in $25 toward the defense of the California End of Life Option Act.
Thank you for helping to make Death with Dignity real for all Americans.
17 Comments.
nathan
I think the end of life drug cocktail should be tried on all these right wing nazi religious zealots to see how well it works.
David Killoran
I believe all individuals have the fundamental right to face death on their own terms. I am politically neutral and am neither “right-wing” nor “religious.” But I support the challenge to the End of Life Option Act because, as the husband of an end-stage ALS patient on hospice, I know first-hand that the new law, as written, does not allow severely disabled patients to die “on their own terms.” Instead, under the new law, severely disabled patients are forced to face death under terms concocted by the managed care industry. With proper care, end-stage ALS patients can have a better quality of life than most people can imagine, but the state of California has failed to stop the health insurance industry from doing everything in its power to deny home health care services to severely disabled patients, thus magnifying the patients’ suffering and creating the grueling emotional, physical, and financial burdens that coerce the patients into wanting to hasten their own deaths. The new law’s toothless requirement that a physician advise a patient of the availability of hospice care is illusory, because hospice physicians will not prescribe a level of care that they do not think is covered by insurance, and they are not required to be educated about home health care rights of severely disabled patients. It was already bad enough that the State’s health regulators have been violating the ADA by coercing end-stage ALS patients out of their family’s homes into institutions where they suffer horribly before they perish, but the new law is even worse because it effectively gives ALS patients a choice between (A) unnecessary suffering from the industry’s bad faith denial of adequate home health care, or (B) a lethal cocktail. This new law, as written, violates the civil and human rights of my wife and others like her. The legal challenge is not frivolous.
Death with Dignity
Thank you for your thoughtful comment, David. We understand your frustration.
ALS is the second most common illness people using Death with Dignity laws suffer from. So it is inaccurate to suggest that people with ALS would not be allowed from using these laws merely because of having that particular illness. If they meet the requirements of the law, they qualify to participate.
One of the points our objection to this lawsuit is that these doctors have the right to refuse to take part. The same goes for patients. Put bluntly, as some are wont to do, if you disagree with the option, don’t use it, but do not deny access to the option to those who may qualify and want it. The same would go for your argument. You are free to disagree with the law’s scope but your disagreement should not deny the option to others.
David Killoran
“ALS is the second most common illness people using Death with Dignity laws ”
That is because the government coerces them into choosing that option by depriving them of adequate home health and hospice care in violation of their human and civil rights.
California health plans provide only a tiny fraction of the in-home care that they should be providing to end stage ALS patients, forcing the patients to fight for every hour of care. The State government (A) fails to enforce laws that require health service plans to provide end stage ALS patients with 16 hours per day of in-home nursing care, and (B) ignores the integration mandate of the ADA and the anti-discrimination provision of the Affordable Care Act by allowing health plans to effectively force ALS patients out of their homes into institutions at the end of their lives.
In a nutshell, by failing to follow the ADA and enforce existing state laws to provide adequate home health care, the State of California places severely disabled, terminally ill patients like my wife under tremendous duress to choose physician-assisted suicide. The new law effectively gives end-stage ALS patients a choice between (A) unnecessary suffering in an institution, or (B) a lethal cocktail. It’s like offering someone the choice between being shipped to a concentration camp or a death camp.
” if you disagree with the option, don’t use it.”
That is a glib and inappropriate thing to say to a severely disabled person who is under extreme duress by the State to kill herself in order to relieve the burden on others who care for her.
Your comment that we would deny others the right to control their own destiny completely misses the mark. This new law is so poorly written that it violates the civil and human rights of my wife and others like her, because it does not require the physician to actually ensure the patient’s rights to adequate home health care are not being violated. You can bet your bottom dollar that ALS patients who use this law are not receiving, and will not even know they have the right to receive, 16 hours per day of in home nursing care under existing laws that the state is failing to enforce.
David Killoran
Before you post another comment, please call Fred Bloomquist, whose wife Angie last year sued for the right to physician assisted suicide, and ask how much help their hospice was giving them. The answer: not even fraction of the care necessary to maintain an end stage ALS patient at home. No one told the Bloomquists they were entitled to receive nursing shift care from their hospice. Instead, they suffered needlessly and pointed to their incredible care burden as a reason for her wanting to hasten her death. Instead of helping her get the home care she needed from her hospice, a physician sought the right to kill her. The new law, as written, does not help ALS patients. It hurts them.
David Killoran
Here are a few comments from ALS families from around the country about the unnecessary suffering they are forced to endure when they do not receive basic home health care, and how being so overwhelmed puts them under unbelievable duress. Federal and state law require hospices to provide all the care necessary to palliate symptoms of a terminal condition in order to maintain the patient at home, yet the state permits hospices to violate this law as to ALS patients, making a sham of the “hospice advisory” clause of the new suicide law. You can see from these comments how wrong it is for their health plans to abandon them when they reach the stage of needing 24/7 home care:
“My husband passed away from ALS last February. He had Medicare but it didn’t provide any care in home. I had to take care of him on a trache for 8 months as he was unable to breath on his own or move anything except for his eyes. It was so hard on my own, no showers, sleep or eating for me for days, only if a volunteer would sit with him once a week. I couldn’t take care of myself much less him from the sleep deprivation and not eating. I got a back injury from moving and changing him that made it nearly impossible to move, I now have to have physical therapy. I should have been there spending quality time with the love of my life. We missed so much time together that I can’t stop grieving and the depression. Sometimes I can’t bear the guilt and have thought of suicide, even though I did everything humanly possible. He decided to come off of the trache because he couldn’t bear to see me so sad and I feel like it was my fault. I am in therapy and slowly healing. I feel for everyone going through this, patients and especially caregivers that have to watch the ones they love slowly wither away”
Lori Alford – South Carolina
“My dad has als and cannot use his arms or legs. My mom is now disabled after caring for him for two years. My sisters and I are now their full time caregivers and we are slowly dying trying to keep up with our parents needs and work and home life including kids of our own. Where is our home health help? Dad retired with 30 years service at two jobs twice! He has Medicare and a part b and d insurance. No home health. We were referred to Hospice but they only provide a nurses aide for bathing for 30 minutes a day and a nurse who checks on him once a week. They are great but the other 23.5 hours are all on us. My neighbor is in her 40’s has Medicaid and has a full time home healthcare provider. Something has to be done. Wouldn’t it be cheaper to help these folks stay in their homes as long as possible? Help!”
– Lisa Long, North Carolina
“My husband passed away in 2012 from ALS. I was his only caregiver. The physical, emotional and financial toll was enough to break even the toughest soul. We had to navigate care issues blindly. If not for the internet, we would have been completely lost regarding the ins and outs of Medicare policy.”
Cindy Jimerson – Georgia
“Can’t imagine how ALS people survive trying to keep their loved one home! And they are not the aged and Alzheimer’s/dementia elders, but in the prime of their lives. ALL caregivers need help, but ALS people have to be able to be at home! In this country, we care little for our aged, veterans, and sick–forcing them to be institutionalized – and even that often leads to financial ruin,!as well as taking a huge toll on family and parient. It is absolutely demoralizing!”
France Desrosiers – Georgia
“My husband has A.L.S. We don’t have family near by and no close friends to help. I can’t take him down stairs and into car. His wheel chair is not safe. I cannot control it. C N A takes us to Dr. Not time too buy food. and things we need…we are 78 years old. I am sure there are others with more needs than us. We have water, thick it, Boost, all large heavy things sent from Amazon. I can’t get it into house… If you can’t help us, please help others!”
Myrna Masterson – Connecticut
“My husband, age 43, has ALS and is on invasive mechanical ventilation. He requires care 24/7. I’m his caregiver and therefore unable to work. He needs assistant with every aspect of life. As each day of his short remaining life passes, he is faced with the difficult decision to continue his life or financially ruin his family.”
Leslee Bublitz – North Dakota
“To place my father in a care facility would have meant a 90 minute drive from his and my home. With the addition of his vent he required 24hr care by a “trained” professional or family member. One family member was my happily eager 6 year old that would put papi’s vent hose back in place if needed while at the dinner table. The denial is real for most diagnosed with ALS so they don’t reach out and advocate for themselves and the hope given by medical professionals can often be deflating.”
Mark Rushton – New York
“My husband has ALS, I am his caregiver, He requires care 24/7 as he has lost use of limbs, and now ability to swallow is becoming an issue. As the care giver I bath, dress, and feed him. It consumes my day and up two or three times at night. Before ALS he worked for years paying into this system that now claims we don’t qualify for home care aid until he’s at end of life. It’s just is not right.”
Joyce Kite – Washington
“My husband Bobby Forster is a 26 year old living with ALS. We are too young to have any type of savings because we are still paying off college loans. All the money I currently make for our two person household goes to rent, utitilties, food, and Bob’s care. I am working 40 hours a week and commuting 2 hours each day. When I arrive home I then take over as his care giver for the night. Essentially I am working 24/7. Increasing our access to home care will allow us to spend time as a newly wed couple instead of a nurse/patient capacity. He has precious little time left with me and I wish for that time to be able to be spent with us living our life as a couple to the fullest.”
Casey Stotz – Rhode Island
“My husband passed away after a 5 year battle with ALS. We were never told we could receive services through Medicare. The cost of his care was enormous and we paid for all of it out of pocket.”
Michele Salvini – Kansas
“I have ALS and it’s costing a fortune for home health care. Either money will run out or I will. Who knows which will be first?”
Ruth Hinsdale – North Carolina
“My dad needs 24/7 assistance. My mom cannot lift any weight due to her own health problems. And they were approved for minimal home health care and pay out of pocket for a companion who they had to train who can only come one day a week for 3 hours. They are way under supported! And Medicare is nearly impossible to deal with.”
Karla Cavalier – Florida
“My mother has ALS (diagnosed 5 years ago). She is on a ventilator, completely immobile, and uses an eye gazer to speak. I am with her 24/7 as her only caregiver. We are in desperate need of help.”
Lauren Burch – Georgia
“My mother has ALS and my family is deteriorating because of caring for her.”
Laura Hillebrand – Missouri
“When I needed help, with my mother, there was none available……she had no insurance and I was told that they were not a charity help assoc……they were like a nursing agency that required helpers to be paid……Here I was the divorced mother of three working, as a nurse, two jobs, nights and could get no help for my mother……..she died after six months of living with me….she was sixty years old.”
Carol Sellers – Tennessee
“My mother is struggling at home with me. We are begging for more support and answers and going in circles being told she needs a qualifying event to get more care.”
Alanna Murch – New Hampshire
“I am paying for my mother’s home care with no help. I will be out of money in less then a year and am overwhelmed with what my options to care for her will be.”
Colleen Hammond – New Jersey
“My husband has limb onset ALS and no longer has use of his arms and is no longer able to work, I have worked full-time for over 40 years and continue to work full-time to try to keep our family together. I also am the caregiver of my husband who requires bathing, feeding, dressing, etc. My years of work dedication has provided for those who do not work and now I/we are in a position of much needed help and there isn’t any…there is something terribly wrong with this picture and I don’t know how we are expected to manage this. EVERY SINGLE DAY that I go to work, I have to worry about how my husband will be fed (as trying to keep weight on someone with ALS is extremely important), in addition to other necessities throughout the day. I challenge any one of you to stick your hands in your pockets for just one day…don’t pull them out…don’t have someone there to help you…and go about your day…then can you honestly tell me and those suffering with this dreaded disease that home care is not needed?”
Sharon Hare – Michigan
Death with Dignity
David, thanks for all your thoughtful comments. We’ll reply to all here just to consolidate.
I’m sorry to say that a lot of the issues you raise are outside the scope of physician-assisted dying legislation such as we are discussing here. The provision of adequate healthcare, the enforcement of laws other than the End of Life Option Act, and other issues you raise are simply outside the Act’s scope. So while we understand your frustration, you may wish to direct it to those organizations/institutions that are set up to address and respond to such issues. We are not.
One of the attending physician’s responsibilities under the End of Life Option Act is to inform the requesting patient of “feasible alternatives or additional treatment options, including, but not limited to, comfort care, hospice care, palliative care, and pain control.” As already mentioned, the provision of these alternatives is outside the Act’s scope.
Another of the attending physician’s responsibilities is to “confirm that the qualified individual’s request does not arise from coercion or undue influence by another person by discussing with the qualified individual, outside of the presence of any other persons, except for an interpreter as required pursuant to this part, whether or not the qualified individual is feeling coerced or unduly influenced by another person.”
The use of the law is completely voluntary. If any person is being coerced to use the Act, it would be up to that attending physician to determine that. If a disabled person does not meet the requirements of the Act, including and especially having a terminal illness that will lead to death within 6 months, s/he would not qualify. No one qualifies for the Act solely based on disability.
The Act, and Death with Dignity legislation in general, hurts no one. On the contrary, it provides peace of mind to those who qualify, as evidenced by the many stories from Oregon, Vermont, and Washington, some of which are available at this website. And it provides protection to physicians who wish or refuse to participate as well.
Barbara
Nathan, your response is exactly the reason why people of conscience oppose end of life “cocktails”. It takes far more love to stay by, care for and ease the suffering of a terminally ill person than to give them a death drink. Have you ever cared for someone dying? Fed them, changed them, made them comfortable, sang to them, held their hands, prayed for them, and let them go peacefully in their time?
David, I empathize deeply with you. I am a nurse for many years and have cared for patients with ALS, on hospice, and on home health. I am now a case manager for high risk patients. It is impossible to get 24 hr coverage (even with medicaid) in the home. The pressure is there to institutionalize the patient if there are not enough “free” caregivers available. I can see clearly the fear of this law being used to push and encourage a suffering person to choose death so “save their family” from exhaustion and financial hardship.
It is far cheaper ($35 to $45) to end someone’s life with a “cocktail” than it is to care for them “with love and dignity”–not just supposed “dignity” –but love…
Death with Dignity
Thank you for your thoughtful comment, Barbara. Anecdotally, we know that it tends to be the patients requesting Death with Dignity medications that has to convince their loved ones about the option being right for them, not the other way around. The fear may be easy to see, as you do yourself, but evidence from 18 years of flawless implementation of the Oregon Death with Dignity Act and 8 of the Washington one simply does not bear it out.
Mike Barrett
What’ s fascinating is that these D with D liberals do not support The death penalty because of the claim of the lack of drugs to carry it out, but there sure seems to be lack of drugs for the mentally ill who want to end their lives.
Death with Dignity
Mike, while the opposition to the death penalty is an issue unrelated to Death with Dignity, we can tell you that it has nothing to do with the availability of medications. You should also know that people who suffer from a mental illness do not qualify for the medications prescribed under Death with Dignity laws.
stephanie
David, my mother has end stage of ASL and we are desperately struggling to gain ANY home health care coverage. We recently qualified for a grant assisting with 20 hours per week but that is all. Can you give me more information as to your comment:
“They have the right to receive, 16 hours per day of in home nursing care under existing laws”
How can I enforce this with her doctors and insurance? They said we qualify for hospice but they only come in for a bit and only help administer medicines, which she does not have because as you know ALS is terminal.
Thank you so much for any information!
Kathleen Kresa
How about being the one dying? How can YOU choose how much pain I must endure? All the people talking about their suffering watching a loved one die……..what about the one who is doing the dying? I want the right to end this misery when I can no longer take it and that day is very close!
Death with Dignity
Kathleen, Death with Dignity laws, indeed, aim to provide relief at the end of life for the terminally ill. The greatest comfort these laws provide is having the freedom to control their own ending. At the same time, family members, too, derive peace of mind from knowing they will not have to helplessly endure watching a loved one die a horrible death.
Week 23/2016 in California - California Death With Dignity - California Death With Dignity
[…] A group of anti-choice physicians filed a lawsuit aiming to halt the implementation of the End of Life Option Act. Learn more → […]
Don Gordon
Dear Death with Dignity,
I am suffering with stage 4 lung cancer.
The pain pills do help sometimes, but there are always side effects to consider…..just a point.
I would like to receive more information on my options, can you help me?
I fear my former employer will will stop paying for my health insurance on the “roll-over” date
How likely is that to happen?
Thank you for your time,
Don Gordon
Dave Killoran
Dear Stephanie, I did not return to this website after leaving my comments last year, so I was unaware of your request until now. You or anyone else who seeks similar information is welcome to read my amicus brief in this lawsuit, and in particular you should refer to Attachment A of my declaration, which is a collection of California Dept. of Managed Health Care decisions requiring health plans to provide 16 hours of shift nursing care for end-stage ALS patients. Here is a link to the brief: https://www.dropbox.com/s/idtpw3ba9bh1sz7/amicus%20brief.pdf?dl=0
And here is a link to the DMHC decisions:
https://www.dropbox.com/s/al43hc4brn52wkk/IMR%20Rulings.pdf?dl=0
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