Old 06-28-2017, 05:35 PM #1 (permalink)
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Default New report on California aid in dying law

According to the Cal Dept. of Public Health, up to 20 ALS patients have taken their own lives under California's "aid in dying" law after six months. I do not oppose the general idea of permitting physicians to assist the suicide of terminally ill patients who would otherwise suffer unnecessarily. However, I remain concerned that PALS are often provided insufficient information about facts relevant to end of life decisions, and too often make those decisions while under unnecessary duress. Under the Act, the patient is required to be “fully informed by the attending physician” in order for the patient’s choice to be deemed an “informed decision.” However, in the real world, PALS are regularly and routinely misinformed by their physicians regarding some of these relevant facts. People who advocate for these "aid in dying" laws should also advocate for stronger assurances that PALS are “fully informed” about their palliative care options and are given the chance to make end of life decisions free from duress.

The quality of information provided to PALS is often bad. For example, PALS are routinely informed that the leading cause of death is respiratory failure after the muscles around the lungs become too weak. This is true, but too often results in confusion, as many PALS and their families, hearing this, fear that the death will be from suffocation. However, according to MDA/ALS, the vast majority of ALS patients die peacefully in their sleep, and death from choking is "exceedingly uncommon." The family member of an ALS patient who took her life under the Act wrote, “"Early on, she knew she’d rather take her own life than succumb to a disease that kills most of its patients through suffocation." Statements like these are the result of PALS being not fully informed about their prognosis. One never hears, “I would rather take my own life than die peacefully in my sleep.”

In fact, “the chances of ALS patients for a peaceful death appear to be above, rather than below, average.” Neudert C., et al., The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol. 2001; 248:612-616 (defining "a good or peaceful death as the type of death one would choose if there were a choice. . . . The most important result, confirming clinical experience, is that the vast majority of ALS patients (G 88%, UK 98%; p=0.11) died peacefully and no patient 'choked to death'”) Unfortunately, not all clinicians inform PALS that their fear of choking to death is unwarranted, and so the patient information checklists required by "aid in dying" laws should be robust enough to ensure that PALS are fully informed.

PALS are also routinely misinformed by their healthcare providers about their hospice care options. PALS are informed that hospice care by licensed nurses or home health aides will be limited to brief visits. Commonly the patient will be offered a weekly visit by a Registered Nurse and perhaps daily visits by certified home health aides of 1-2 hours in duration. Considering that an end-stage PALS may require around the clock skilled nursing care, the level of hospice care that is routinely offered to them is only about 2% of the care required. California physicians routinely fail to tell PALS that regulators have ordered hospices to provide PALS with as many as 16 hours per day of in-home nursing shift care. See DMHC IMR Nos. MN02-818 and MN16-22905.

Advocates of "aid in dying laws" should do more to ensure that PALS are truly and actually fully informed and not suffering unnecessarily because they are being short-changed of hospice care. Any “right to die” should be completely autonomous. No PALS should ever feel a “duty to die” because the family’s burden of care is too great.

The California End of Life Option Act, which was passed hurriedly in a special session, includes a provision by which the State can fix these problems, by revising the “attending physician checklist” to better ensure that patients with severe disabilities are advised by physicians who are more fully informed about their prognosis and their right to adequate hospice care. Accordingly, California residents who support this law should also advocate for the Medical Board to amend the “attending physician checklist,” as permitted by the Act, to require updated classroom education regarding palliative alternatives before advising a severely disabled patient about aid in dying.
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Old 06-29-2017, 11:18 AM #2 (permalink)
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Default Re: New report on California aid in dying law

I don't disagree with your call for better education in terms of palliative resources. But I think you have to be careful when making categorical general statements such as "One never hears, “I would rather take my own life than die peacefully in my sleep.”"

Some PALS choose suicide because they do not wish to experience the decline of their bodies to the point they are severely handicapped. No amount of hospice care or assurances about dying peacefully in their sleep will change the fact they do not want to reach that point of dependency on others, loss of control of their bodily functions, and lack of enjoyment of things. I used to follow the blog of one of the PALS who chose physician assisted suicide in California last year. She was well educated, affluent, could afford round the clock aides. But she wrote she was tired of living this way - she had reached a point where she had had enough. She wanted release.
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Old 06-29-2017, 01:29 PM #3 (permalink)
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Default Re: New report on California aid in dying law

she had reached a point where she had had enough. She wanted release.

I agree. It's my choice!
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Old 06-29-2017, 03:52 PM #4 (permalink)
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Default Re: New report on California aid in dying law

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I don't disagree with your call for better education in terms of palliative resources.
That is only half of it. I also call for better education in terms of prognosis. PALS should not be given inaccurate, misleading, or confusing information about what the future has in store for them. Anyone who faces such choices should be fully and accurately informed about what they can reasonably expect to experience if they make one choice or another.

The ACLU, which has led the charge for assisted suicide, has argued that "The right of a competent, terminally ill person to avoid excruciating pain and embrace a timely and dignified death bears the sanction of history and is implicit in the concept of ordered liberty." However, in saying this, the ACLU also "support[s] the use of legislative safeguards to ensure that all requests of the terminally ill for aid in dying are the product of thoughtful and informed self-determination."
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Old 06-29-2017, 07:25 PM #5 (permalink)
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Default Re: New report on California aid in dying law

Dave what I will say is that this disease is so unpredictable - better education in terms of prognosis is not an easy thing as the way this disease progresses is so individual.

My Chris for example was TERRIFIED he would 'pass peacefully in his sleep' and this kept him awake and anxious despite medications. He did not see this as something of comfort. He was actually terrified of death until he reached a certain point in progression.

I believe that everyone has the right to say where THEY draw the line because the line is not drawn in the same place for everyone. I personally have very firm views on what quality of life would mean for me, but I would never say what it would mean for anyone else.

My views on this differed from that of my Chris, but I put my view aside and simply advocated for what he wanted.

When he wanted interventions I supported him and when he said - no more hospitals I supported him. They may have kept him alive a few more days, weeks, even months had he chosen medical interventions.

I feel you are doing some wonderful work of great value, but I totally support the right to choose and I don't believe all those PALS you report who have made that choice did so because they were not informed well. PALS are facing the worst monster on this earth, with no way of knowing exactly how that monster will munch away at them, and no doctor can say this either. They have the right to choose whatever they want based on their beliefs about quality of life, which is more and deeper than what gets ticked off some medical checklist.

Keep up the work you are doing, but please be sensitive that not even those of us who have been CALS can know what a PALS truly feels, fears and wants.
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Old 06-29-2017, 07:53 PM #6 (permalink)
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Default Re: New report on California aid in dying law

Believe me. I get it. I really do. My wife, at various times, asked me to take her to Oregon, to smother her, to research methods of assisted suicide and euthanasia--the whole gamut, including, sometimes, fear of going to sleep and not waking up. There were at least half a dozen times she definitively made up her mind to end it, and I always assured her I would support any and every decision she made about her own life. Throughout this process, I also witnessed a lot of PALS getting bad information and bad care from their healthcare providers, and saw how this made a bad situation even worse. These "aid in dying" laws, and the current controversies surrounding them, have provided an opportunity to improve the lives of all PALS and CALS simply by improving the attending physician checklists that these laws require. Improve these checklists, and I believe it is unavoidable that all of our lives will get better. Sorry if it seems insensitive for me to point out problems with these laws, but I see this as a time for left-brain thinking: the current opportunity to compel our physicians to become better educated about ALS--and how to optimize care for PALS--is an opportunity to improve our lives that we should not be passing up.
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Old 07-12-2017, 11:48 PM #7 (permalink)
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Default Re: New report on California aid in dying law

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the right to choose whatever they want based on their beliefs about quality of life, which is more and deeper than what gets ticked off some medical checklist
The U.S. "aid in dying" laws, as currently written, contain exactly what you disparagingly (and appropriately) describe as "some medical checklist." The checklists that are currently required are empty, toothless, useless, meaningless, worthless pieces of paper.

Please focus on what I am specifically advocating for: medical education that will help ensure that PALS' doctors are actually educated and up to date about how to improve a PALS' quality of life with palliative care and equipment. That would not be not an empty, toothless, meaningless requirement for a not-up-to-date and/or ALS-illiterate doctor who is asked to prescribe life-terminating drugs to a PALS.

As for being sensitive, I would ask that all on this forum be sensitive to the civil and human rights of PALS. As "Lobster" once wrote on this forum: “I feel pressure to end my life because of the lack of family, social, and societal support. While I would like the right to die on my own terms, until I have the right to live in dignity, any so-called right to die is pressure to die.” Should a paralysed person have the right to die?

Out of respect for Lobster and all PALS who want to make choices on their OWN terms, every effort should be made to support and improve their "right to live in dignity." As weird as it may sound, these "aid in dying" physician "checklists" are the only existing, viable path to that goal in the U.S. that I can see. If you can think of a better one, I'll support it 100%.
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Old 07-13-2017, 12:57 AM #8 (permalink)
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Default Re: New report on California aid in dying law

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I don't believe all those PALS you report who have made that choice [death] did so because they were not informed well.
I don't follow you. I do not think I ever suggested that "all those PALS" who have chosen to hasten their deaths "did so because they were not informed well." "All" is a big word, which I didn't use.

The only question is: should someone faced with that choice have the right to be fully informed about their prognosis and palliative care options? The answer is yes. Don't you agree?
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Old 07-13-2017, 05:24 AM #9 (permalink)
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Default Re: New report on California aid in dying law

I think my Brian has been very well informed and his choices are still very clear- have been since diagnosis . I agree there is a lot of misunderstanding on manner of death and even care options for PALS. it is what important to note too that until 24/7 homecare becomes an option, and also better disability and carers payments in the U.S., financial considerations that are insurmountable for many PALS will exist. Very few people wish to die in a Medicare nursing home.
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Old 07-13-2017, 01:23 PM #10 (permalink)
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Default Re: New report on California aid in dying law

Very well said, Lkaibel. I would add that there do exist some avenues to funded 24/7 professional home care (which is required coverage in any "federally qualified" HMO and is also required, when necessary, to be provided by any hospice in the US. It has also been provided to Medicaid patients who have sued under the ADA and to some patients whose insurers prefer to pay for home care rather than more expensive institutional care.). The barriers to these avenues are (1) lack of education, (2) coordinated efforts by the managed care industry to make this care hard to access and to push it all on the exhausted families, and (3) discouragement.


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until 24/7 homecare becomes an option

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Old 07-13-2017, 06:38 PM #11 (permalink)
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Default Re: New report on California aid in dying law

I think a part of it is, you don't need just a regular Medical Social Worker to access some of those things- you need to be or to have a hard core patient advocate.

There is a man I have talked with locally who's wife is on a vent at home and he has moved heaven and earth to make that possible for them while keeping their home and some measure for him of funds- 401k and. Full time job. She gets 16 hours a day of homecare- paid. I don't think it's an accident that he was a cancer patient advocate for 13 years.
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Old 07-13-2017, 08:25 PM #12 (permalink)
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Default Re: New report on California aid in dying law

Lenore,

I agree with you, 100%. Before my diagnosis, I helped so many people navigate tax audits and insurance issues. Besides my full-time job, that pro bono work was another full-time job.

Some points:
1. Some PALS do not have spouses or children
2. Some PALS have been abandon by their family and friends
3. Some caregivers don't have time and/or knowledge to be an advocate

At our local chapter meeting, there have been CALS who don't even understand ALS is fatal. They went to clinic, talked to neurologists, yet still have no understanding of the disease. From my experience uneducated people do not frequent discussion forums as their computer skills are limited or non-existent. This is not an overstatement. When I did the ALS Awareness Project I met in person people (PALS and CALS) who were doing nothing except "letting the disease take its course." Yesterday, I was asked by a PALS what a BiPap was and why would he ever need it? Another PALS obviously needed a wheelchair but had no idea how to get it or who pays. He is fully covered and was given information to help.

I hadn't been to a meeting in several months due to my ankle, the move, and back pain so I went prepared with a handout that gave attendees instructions on how to connect to various online groups (this forum was first on the list.)

I have to be my own advocate. Nobody is going to do it for me. It is hard. Today I'm dizzy, tired, and had to leave the pool because my neck hurt and I felt a vertigo attack coming on.
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Old 07-13-2017, 09:48 PM #13 (permalink)
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Default Re: New report on California aid in dying law

Kim, I honestly wish we lived close because I would love to be a friend who actually does something helpful. I am touched that in your situation as a single person with ALS you reach out and help others besides everything you take on for yourself.

Thanks for reminding us of the people who really don't get any of this at all. My own husband, with college education was slow to understand much about ALS and in general has had little to no cause to be knowledgeable on medical matters. Imagine if you did not even really use computers and were dealing with this? Wow.
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Old 07-14-2017, 04:50 PM #14 (permalink)
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Default Re: New report on California aid in dying law

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you need to be or to have a hard core patient advocate.
That is certainly the case as things now stand, which is unacceptable IMHO. This is indeed one of the reasons I have proposed advocating for a continuing education requirement in the attending physician checklist. The better people in the medical system are educated about PALS and their home care and DME needs, the less individual hard core advocacy should be needed.

Let's look at the numbers. According to the CDPH report cited above, in six months, 173 unique physicians prescribed 191 individuals aid-in-dying drugs. Presumably, most or all of these physicians are specialists in hospice/palliative care, as almost all of the patients were on hospice. If we extrapolate to the ALS population, that means up to 19 unique physicians (who I expect were likely as clueless about ALS as most hospice physicians) could have received two hours of classroom instruction about how to recognize the home care and equipment needs of PALS. I would also expect that a number of additional unique physicians provided counselling about aid in dying but did not prescribe anything. At the rate of educating 40 or more hospice/palliative care physicians per year in California alone, it would not be very long before there was widespread knowledge about the palliative care needs of PALS among the relevant medical community. Educating 40 hospice/palliative care doctors per year that PALS could be entitled to up to 16 hours of nursing shift care or more from their hospice or health plan, I think the ALS community as a whole could benefit from this. Don't you ?

There is also solid support for my idea in the medical literature. See Oliver, D. J., et al (2016), A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol, 23: 30–38. doi:10.1111/ene.12889 (observing there is "limited education" of palliative medicine physicians in the care of patients with progressive neurological disease, and recommending "A targeted education programme for health professionals").

And can it happen? If PALS and CALS insist on it, it will happen. If PALS and CALS choose to remain silent while their home health needs are ignored by lawmakers, then, well, I guess the hard core advocates will be left alone to educate a doctor here and there, while the rest of the medical community remains as "limited" as ever in their education about ALS.

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Old 07-14-2017, 07:38 PM #15 (permalink)
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Default Re: New report on California aid in dying law

I am not sure if this is the place to put this- Mods, feel free to move. But this was posted elsewhere, and does touch on the tremendous financial burden at home ALS care can be, and may be a huge part of why people make the decisions they do- not only for themselves, but for what they perceive is in the best interests of their families. As this is activism for "at home" care and easing of the attendant financial burdens, I hope this is the best place to put it.

https://www.change.org/p/create-a-na...iving-with-als
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