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Dave K

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I do not come out on either side of the suicide or physician-assisted suicide issue, but I do staunchly support the right of PALS to be fully informed about their prognosis and treatment options. Indeed, in every debate concerning physician assisted suicide, all sides agree that the patient must be fully informed. Unfortunately, the “physician checklists” required under the recently enacted “aid in dying” laws in California and Colorado are minimalist and fail to ensure that people with ALS are fully informed, which is leading to tragic results.

Assisting the terminally ill who wish to hasten their deaths has long been a common, though hidden, practice of compassionate physicians. See Julia Pugliese, Note, Don't Ask--Don't Tell: The Secret Practice of Physician-Assisted Suicide, 44 Hastings L.J. 1291, 1295 (1993). Many patients suffering from incurable conditions have their deaths eased at home by the ministrations of opiates by family members. No one is being prosecuted for these acts of compassion, so the issue is: what do the new laws really change?

As a CALS, these issues are very personal, and very immediate. However, as an attorney I am shocked at how poorly these new "aid in dying" laws are being written, and how easy the new laws make it for the managed care industry to withhold care and equipment to such an extent that it makes suicide seem like the best option. The new laws state that the patients must be "fully informed" by their doctors, but the new laws do not require a record of the actual information that is provided to the patient, and from what I've seen, many PALS are not fully informed by their physicians about their end of life options. The vast majority of PALS die peacefully in their sleep, but many PALS are so poorly informed by their doctors about their prognosis, that they have an unwarranted fear of choking to death. The law requires a hospice to provide ALS patients with around the clock in-home care if necessary, but due to current funding structures, virtually all hospice physicians tell ALS patients that only a few hours per week of nursing will be provided. An honest physician will disclose any financial interest in a proposed course of treatment, but it would be exceptional for a doctor who is paid on a capitation or per diem basis to tell a PALS that omitting in-home shift care from the patient's care plan serves to increase the doctor's financial bottom line.

By failing to provide for any accountability for actually "fully informing" PALS about their options, the new "aid in dying" laws make it incredibly easy for HMOs and hospices to paint suicide as the most desirable option for a PALS in order to get these super-expensive patients off of their books. There are a lot of uninformed/misinformed PALS who are at risk of because of how poorly these laws have been written.

So the bottom line is, an "aid in dying" act with an unenforceable "full information" provision probably hurts PALS more than it helps them. To prevent PALS from being short-changed when they are given their care options, we should all be urging our lawmakers to put some teeth into the "full information" parts of these "aid in dying" laws.
 

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I would want to be fully informed, and then some more. But, however, I wonder...

Some doctors have very good relationships with their patients and their families. I trust them. If a government agent--even a medical doctor--is going to enforce a doctor to document a,b,c,d,e... it would be micromanaging the relationship between the doctor and patient. (I learned a long time ago that micro-reporting eventually becomes micromanagement.)

Wouldn't that give the state unprecedented power to review a person's medical record?

Isn't what you're proposing tantamount to the government second-guessing the doctors?
 

GregK

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These concerns were raised during the Colorado vote.
They were the only leverage the christians could raise.

They were sadly lacking in actual examples however.
 

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Interesting timing of your comment, Dave. A case series of PALS who used the DWD Act in Washington State was recently published.

Unquestionably, both because of the self-administration "requirement" and the fact that family/friends have other options, the law is not used often. However, there is no indication of the Soylent Green concerns you describe. Many laws are poorly written and the "unwritten laws" of health care generally push out those that are written. If we put the energy into laws and policy that would benefit the many, I would be happier than rewriting laws that only apply to a very few. But that is just me.

We encounter PALS (in their own voice or their CALS') in a dark place often here. One of the primary goals is to determine what someone's wishes truly are for the future, beyond the moment. Once those goals are clear, I think many of us seek to facilitate their attainment through whatever peaceful means necessary. That is a very different objective and method than what any DWD Act is likely to entail in the foreseeable future.

Best,
Laurie
 

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I agree that many PALS have a high fear of choking even though PALS do not choke to death.

Not all PALS die peacefully, but most do if they are managed well palliatively.

I don't know that a large number of PALS would chose the DWD because of a fear of choking. I personally feel that it is the loss of dignity, the feel of being trapped and locked into an unresponsive body, and a feeling of no hope but to get worse that would most likely be more of an influence.

I agree that every PALS needs their doctor to fully explain and disclose, but it's not like this is the difference between them being cured and them dying. If a PALS is in a place where they are not receiving good medical and hospice assistance, maybe this would influence their choices.

Thanks for bringing this up - in Australia we have no such laws, but I'm interested as one day we may.
 

Dave K

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I will answer your questions in reverse order:

Wouldn't that give the state unprecedented power to review a person's medical record?
No. Medical Boards, state prosecutors, and family members have long had the power to subpoena a patient's medical records if there is reason to believe the doctor failed to fully inform a patient about a procedure that harmed the patient. (Think Michael Jackson.) The new "aid in dying" laws do not change that.

Isn't what you're proposing tantamount to the government second-guessing the doctors?
That is not what I'm proposing, but you did put your finger on something. Under the new "aid in dying" laws, "second-guessing" doctors is the only procedure available to give effect to the "full information" requirements, and it is not an ideal procedure. Under these laws, if a doctor prescribes lethal drugs to a fully informed patient, it is not considered assisting in "suicide." However, if a patient takes the drugs without being fully informed about his or her prognosis and treatment options, then the doctor has criminally assisted a suicide. If it is suspected that the patient was not fully informed, the current procedure is for a Medical Board, prosecutor, or family member to subpoena the patient's medical records, standards for which require a detailed description of all the information provided to the patient, and if any material information is lacking, then the physician would be subject to discipline, or possibly even incarceration. These laws thus create traps for the unwary physician who fails to adequately document the "informed consent" discussions with the patient.

If a government agent--even a medical doctor--is going to enforce a doctor to document a,b,c,d,e... it would be micromanaging the relationship between the doctor and patient.
"Aid in dying" laws already require that the doctor document a, b, c, d, e... However, it would not be micromanaging a doctor to require that a PALS who is contemplating suicide be informed of f, g, and h. There is a continuum of medical procedures that require extensive "informed consent" documentation. We trust the judgment of a physician to determine the extent of information provided for physical examinations, drawing of blood, imaging studies, electrocardiograms, and many other examinations. However, when there is a major invasive procedure, the consent process is extensively documented. Ideally, documentation is provided by both a detailed consent form and a note in the patient's medical record written or dictated by the physician. Similarly, where there is a risk of serious side-effects, prescriptions are required to have a black box warning, and these warnings ensure that the pharmacist does not mistakenly omit important information when consulting a patient about the drug. When a PALS is asking a physician about "aid in dying," this does not lie anywhere on the a continuum between these two poles, because it IS the pole, and warrants the most thorough information requirements. So there is no issue here about "micromanaging" physicians. No physician should ever have to ask "could I have done more to help this patient" before prescribing "aid in dying" drugs. The bare-bones "no information" checklists and consent forms that have been made part of the current "aid in dying" laws are dangerous for PALS and expose doctors to civil and criminal liability. It would benefit the patient, the physician, the family, and everyone involved if the physician had a thorough checklist of information to provide to the PALS who seeks aid in dying drugs. It's the only way to ensure that the PALS is, in fact, fully informed.
 

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A case series of PALS who used the DWD Act in Washington State was recently published. . . . However, there is no indication of the Soylent Green concerns you describe.
I'm not sure how Soylent Green became part of this discussion.

According to the study you cited, 66% of PALS who took their lives cited "burden on family" as one of the reasons. No one should ever feel a "duty to die" due to feeling like a burden on their family. As I indicated in my post, virtually all hospice physicians tell ALS patients that only a few hours per week of nursing will be provided, even though the law requires a hospice to provide ALS patients with around the clock in-home care if necessary. This is exactly why these "aid in dying" laws need to be better written to ensure PALS are better informed about available hospice care--by people who do not have a financial stake in reducing the number and duration of home health visits. It troubles me deeply to think about the unnecessary suffering endured by PALS and their families who are being so severely starved of care that they see suicide as the way out of their misery, when they could instead be making the best of the time they have left with their families if they were only better informed.
 

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Thanks for your analysis and information.

Something popped out at me, though. You said the current laws are "dangerous for PALS." What is the danger? That they will die?

That question kind of brings it all into perspective for me.

I'm very much FOR having a good alternative to wasting away, waiting for nature to take its course. In fact, the word "suicide" is an emotional block that prevents people from understanding the whole subject.

Suicide has serious long-standing connotations in religion, morality, and law. It is seen as bad, stealing a life, altering God's plan, or causing needless suffering in the survivors. But in the case of a terminally ill patient with no cure, the patient and the doctor are not changing the outcome, not stealing or altering or causing pain. They are eliminating the suffering. I don't call that "suicide." I call it "managing your own dying process." It's a good thing if you can get it. The ability to choose your own manner of dying would be a most desirable part of life.
 

Dave K

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What is the danger?
As I said in my reply to Laurie, the danger is the unnecessary suffering endured by PALS and their families who are being so severely starved of care that they see suicide as the way out of their misery, when they could instead be making the best of the time they have left with their families if they were only better informed.

You've been around this forum long enough to know how PALS and CALS suffer when they do not have adequate care at home. In the U.S., federal law requires a hospice to provide all care that is necessary to palliate the terminally ill patient's suffering, and every state requires its hospices to provide this service without any limits on the frequency or duration of visits by nurses and aides. But the way hospices are funded makes it so they will lose a lot of money if they actually provide all of the extensive in-home care a PALS may require. The result is PALS are left to be cared for by overburdened family members who may spend every penny on care workers and suffer from exhaustion because the care workers won't work nights.

In our state, regulators have published decisions requiring hospices to provide up to 16 hours of in-home nursing care to end stage PALS. This is obviously relevant to the 66% of ALS patients who are considering end of life options because of concerns about family burdens, and it is therefore required to be imparted to patients under the "aid in dying" law. Do you think the information is actually being provided to PALS by their hospice physicians who are counseling them about end of life options? I know for a fact that this information is usually (if not always) withheld from the PALS by their hospice providers. (You say you "trust doctors," but can you name one PALS who has been told by their doctor that they can expect to receive up to 16 hours of in-home nursing from their hospice provider?)

Similarly, Betsy Davis was a California PALS who recently took her life with the assistance of a physician, and the primary reason that was given was that she reportedly believed PALS usually choked to death. After her family and friends said goodby and left her to take her fatal dose, it was reported they heard a "primal scream."

There's a reason we support the right of patients to be fully informed. Without full information, PALS are in serious danger of suffering unnecessarily.
 

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A primal scream? What was that about?

To your question: I would not expect a doctor to know the hour limits on hospice, just like they don't know how much money procedures cost. They do their medicine, and refer the patient out appropriately. Unfortunately, it's rare that a "navigator" is anywhere in sight, to help the patient understand options, their rights, etc.

I support having healthcare navigators who understand the system and can guide the patients.

Vigilance against potential litigation has been killing medicine for decades. My doc needs to do medicine, but too many providers spend too many hours practicing defensive medicine, like explicitly writing down every possible differential, documenting every rule out and every bit of evidence that led them to their diagnosis. I've had many appointments where a doctor didn't actually look at me, because they were busy typing.

I don't understand all the implications of the new proposal, so I can't judge it. I am glad to read your treatment of the subject. Thanks.
 

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You're right, Dave, I don't know of any PALS who's been told to expect 16 hrs a day of home nursing via hospice. That's because it's not happening. It's not going to be provided because it would bankrupt hospices based on current reimbursement levels, regulatory opinions to the contrary. So it would be a cruel joke to say that, when it's not true, as you acknowledged it's not. And even worse to pass a law mandating that such a false disclosure be made!

As to the large percentage of DWD users who cited family burden, I don't know anything about the questionnaire that was used, but quite often "family burden" is a proxy for the less socially-acceptable "I don't want to go on living." Nor do we know how many CALS completed the survey, in reality.There's something in survey research called social bias, almost impossible to control for in this case. And you have no basis for believing that even 16 hours a day of home nursing could have changed that. The very fact that someone would be receiving 16 hours a day of home nursing would say something about their and yes, their CALS' quality of life.

You and your wife have found your own answer, and I remain happy for you, but it does not automatically apply to the world as a whole.
 

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Assigning the frequency and duration of nursing and aide visits is a fundamental part of the hospice doctor's job and must be done in consultation with the patient and family. It is absolutely and unquestionably part of the practice of medicine. It is not "false" to tell ALS patients that there are no limits other than what is necessary and that up to 16 hours of nursing have been provided to multiple end stage ALS patients. The only falsehood would be to state that this help is not available. In fact, prior to 2002, funding structures existed that ensured that hospices were paid for providing this level of care, which was much more common at that time. It is flawed and dangerous thinking to allow funding methods to inform decisions of medical necessity. It is supposed to be the other way around--funding is supposed to meet the need. No bankruptcies will take place. Large hospices like Kaiser have more than enough resources to meet the needs of ALS patients who require around the clock care. But there will be no incentive to repair the flawed hospice funding system if we take the view that ALS patients just have to suffer. That is terrible public policy.
 

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I am glad I live in Colorado where such decisions have been relegated to the person suffering.

I am a Christian. I have a terminal disease. I am glad I am the one who gets to make the decision.

I don't need a doctor to provide me any details. I don't need the government to track that those details were provided.

My decision is to live as long as I can. But, it is my decision and should not be the decision of anyone else.

I spent 30 years as an executive in the high tech industry. Mike's comment that micro reporting leads to micro management rings very true to me.

Steve
 

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I've been ignored so far but that's ok.

My PALS was far more distressed by having paid people he did not know do care for him than to have me do it. So providing lots of care hours would not have increased his quality of life.

Interesting discussion. I don't think it's ever good to presume everyone will feel the same in every situation - quality of life is incredibly personal.
 

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My wife also greatly prefers me to be her caregiver, which is why I have fought so hard to keep her at home. But we all have to sleep, and some of us have to work in order to pay the medical expenses. That is where the community has a choice to make: provide care for disabled people in their final months and continue to integrate them in our lives, or point the patient toward the exit and say, "it was nice knowing you."
 
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