Dave K
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- Jul 13, 2015
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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.
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.