Qadgop, you are the kind of person all doctors should be.
My question is which family? Surely not all of them. Not the sibling the patient has been estranged from for 20 years, right?
And I’m having a hard time understanding how someone who no longer understands the consequences of dying (I’m assuming no lucid periods) being able to make the decision to die. Assuming no existing directives, that changes things.
For a patient who has been approved for physician-assisted death, some kind of voluntary action is required on their part in order to actually ingest the medications, but they may need help getting the prescriptions filled and in actually getting the meds brought to their mouth. Some hospice care teams may be willing to assist with these tasks regardless of location, some inpatient hospice facilities might be willing to stand aside while family handles it at their facility, and some inpatient hospice facilities might prohibit PAD on their premises at all. If a patient wants to preserve the option of a PAD, these kinds of policies would be a good thing to understand before committing to any particular hospice care team/facility.
I don’t find it hard to understand at all. It’s not unlike a tax attorney who believes in homeopathy. He’s got some wacky ideas, but he’s competent enough to do your taxes. There are a lot of people like that, including folks in nursing homes who mistakenly believe their kids put them there because they no longer love them (some don’t, but most do).
The psychologist and physician will have patient files with intake information, meds, past medical history, social history, etc. There will (should) also be a comprehensive interview process with both the medical doctor and especially the psychologist for anyone engaged in the PAS. Relevant information not in the chart should be gleaned from the interviews, including info on the patient’s family members.
It’s not uncommon for chronically ill, elderly people to become profoundly self-focused—pain and depression will do that to you. Most of these people won’t be clinically delusional (they can still give consent for PSA), but many won’t be focused on their family, and may even develop distorted feelings about them, feelings that they didn’t have before they become ill and/or depressed. They may for example come to believe a family member no longer cares about them, when in reality they do. Or, they may come to believe a family member is too emotionally fragile to be involved in their PAS, when in reality they can handle it and want to be involved. There are many possible distorted feelings they could develop, but still not be medically delusional.
I can’t conceive of any PAS protocol that wouldn’t involve an extensive interview process, over a long period of time, during the waiting period. No one should be able to come in off the street and tell the doc they want to end their life, and the doc replies, “okie dokie, is next Monday good for you?”
The interview process should include a discussion of close family members and friends—how the PSA will affect them, whether or not they should be involved in the PSA treatment plan, and whether or not they should even be notified. Unintended consequences should be discussed and made clear to the patient.
I don’t propose that any family have veto power over the final decision of the patient (only the doctor and psychologist should have that, and only if they determine the patient is not of sound mind). This is just a process to determine who should be notified, and who should be involved in the PSA. It’s a big deal, bigger for some than others.
The doctor’s discussion of family members should go something like this:
Doc: Fred, do you want your son Timmy contacted?
Patient: No, Timmy abused me when I got old. He just wants me to die to get his grubby hands on my money, screw him.
Doc: OK, I’ll put Timmy on the no-call list. How about your daughter Midge, should we contact her?
Patient: Sure, Midge is my angel, make sure you call her.
Doc: you bet. How about your granddaughter, Milly?
Patient: Aw, Milly is a sweet, emotional girl. I love her, but I think she’s too fragile to handle my suicide.
Doc: Are your sure? I understand Milly is a decorated marine sniper with a dozen kills. Perhaps she can handle your passing.
Patient: maybe you’re right, let me think about it.
Doc: you got it. How about your nephew Mortimer, would you like him contacted?
Patient: Oh, I forgot about good ol’ Mort, glad you reminded me. Yes, please contact him, he’s a good egg.
Doc: your wish is my command. How about your estranged wife, Karen?
Patient: That beast cuckolded me for years and made me watch, against my will. I’d kill myself before letting her get involved in my death!
Doc: alrighty, I’ll put Karen on the no-call list then? OK, that wraps up my call/no-call questions. Now let’s talk about my fees…
The psychologist should expand on discussing who to include and who not to include during her interviews.
No abusive, or ulterior-motivated family member should be involved or notified and interviews with the psychologist should accurately identify those people.
On the other hand, the psychologist should also be able to identify family members who the patient has developed distorted feelings about—people who do care about the patient, want to be involved, and can handle it. People who, before the patient became self-focused, would want to be involved.
At some point during the waiting period, the doctor and psychologist should get a bead on who should and who should not be involved, or notified, in the best interest of the patient, and the family members. At that point, the patient should be required to sign a form listing who they want on the call/no-call list. Those on the do-call list should then be called. Simple as that.
It’s not a “gotcha” process to get patients to include people who really should not be notified. It’s just a way to include those family members who the patient would have wanted to be included when they weren’t so self-focused, or have evolved distorted feelings about, that visits with the PSA psychologist should identify and discuss with the patient.
Not contacting certain family members who should be contacted (and who the patient in better days would have wanted to be included), could have a number of bad consequences, like not having financial affairs in order, or simply not giving closure for those who really cared and need closure. And of course, there’s the matter of liability. “Judge, he was my father, and no one contacted me. They coerced Dad into this PAS for profit! They turned him against me so I couldn’t reason with him, and comfort him. I’m so traumatized I can’t work anymore…”
This is the crux of the problem. When you are at a stage where you understand the consequences of dying, there is a process and some hoops to jump thru for PAS. The very people who may be suffering the most who have lost everything and are just existing day-to-day, who would be releived by PAS - it’s not an option for them - they are forced to keep on living.
I guess that’s where clarity in advance directives matter. I am not sure how one would include the option of PAS and how that would work if you slipped into dementia. I don’t think you can direct someone to perform euthanasia on you if you are slipping into cognitive decline.
Actually, now that I’ve looked into the Colorado requirements beyond the Google summary, I see there’s more to it. The basic requirements I listed earlier were that the patient had to be:
- An adult.
- Terminally ill.
- Given a prognosis of six months or less to live.
- Mentally capable of making their own healthcare decisions
But according to this site, that’s just the the bare minimum before doctors can even consider going further. It turns out that requesting (not requiring) the patient to notify family members is part of the process:
A patient who meets the requirements above will be prescribed aid-in-dying medication only if:
- The patient makes two verbal requests to their doctor, at least 15 days apart.
- The patient gives a written request to the doctor, signed in front of two qualified, adult witnesses. (The law sets out the specific form that the patient must use.)
- The prescribing doctor and one other doctor confirm the patient’s diagnosis and prognosis.
- The prescribing doctor and one other doctor determine that the patient is capable of making medical decisions.
- The patient has a psychological examination, if either doctor feels the patient’s judgment is impaired.
- The prescribing doctor confirms that the patient is not being coerced or unduly influenced by others when making the request.
- The prescribing doctor informs the patient of any feasible alternatives to the medication, including care to relieve pain and keep the patient comfortable.
- The prescribing doctor asks the patient to notify their next of kin of the prescription request. (The doctor cannot require the patient to notify anyone, however.)
- The prescribing doctor offers the patient the opportunity to withdraw the request for aid-in-dying medication before granting the prescription.
To use the medication, the patient must be able to ingest it on their own. A doctor or other person who administers the lethal medication may face criminal charges.
(bolding mine)
I knew about many of these requirements, but I didn’t know that doctors were required to ask patients to notify their next of kin.
I expect other US states where PAS is legal have similar requirements.
That seems to take the responsibility off the doctor and put it on the patient, where it probably should be.
Doctor: Have you informed your loved ones about your decision, and the process we’re going thru here?
Patient: Yeah. I’ll take care of that.
Doctor: Okay.
The doctor is required to ask about it, but not to ensure it is done.
The thing is – what were they going to do differently based on the readings from any monitors?
If the answer to that is “nothing”, the same things will be done/not done no matter what the monitors say – then there’s no sense in the monitors. And while some monitors are minimally invasive and minimally distracting/disturbing, “minimally” isn’t the same as “not at all.”
First, thanks for coming into this thread, Qadgop.
And I think that’s a reasonable and obviously thought-out position – but will just put in one thought: maybe, in “do no harm”, the question is “what is harm, in this particular situation?”
Dementia’s a funny thing. Just as it’s possible not to be able to remember where one lives now but to still clearly remember the place one lived in 50 years ago, it’s possible to still understand what dying is and that it’s the consequence of not eating, or of taking or not taking some specific medication; even though one no longer understands that possessing a credit card doesn’t mean that the bill has been paid, or that a child who now lives a five-hour drive away can’t come by for a few minutes every day.
But I very much agree that clear advance directives are a good idea.
In a civilized state in a civilized country, Your decisions about PAS would be something you start setting up when you’re 40. Just like your will.
As you get older the topic gets revisited periodically. If you do start sliding into dementia there will be months or years while you’re still plenty with-it to set up criteria to be put into action when you’re not.
That won’t save everyone from a nasty death. The 39yo who’s in total “what me worry?” mode until one day that year they have a massive stroke and become vegetated. Sucks to be them.
But that’s not the fat part of the envelope. The vast majority of these cases are simple age or wasting disease accompanied by a sense of helplessness that society or supernatural belief prevents thinking about, talking about, or acting on, end-of-life desires. Almost all of which situations can be materially improved with enlightened legislation and proper advance planning.
Oh, I absolutely agree - it just struck me as odd at the time.
The only thing “different”, I guess, would be to document time of death, rather than “some time between 2 AM and 4 AM when we happened to check on him”.
They also left his pacemaker turned on. Apparently that’s standard, but still a bit mind-boggling.
If you DO develop dementia, PAS is completely useless, at least as far as US laws go. Looking back at the rules from Colorado: you won’t have a diagnosis of 6 months or less (at least not due just to the dementia). And the patient is not capable of making medical decisions.
Your medical power of attorney, set up well in advance, can cover other contingencies, including ones that will allow you to die without intervention.
PAS as written today, yes, the demented are screwed.
PAS as we’re (or at least I’m) talking about becoming a societal norm in some future more enlightened era (speed the day!), not so much. It would be designed explicitly with features to permit the not-yet-demented to arrange their own death according to their own standards.
Which is exactly why I’ve been arguing all along that the e.g. 6-month-to-live requirement is an utter sop to the religionists, and a monstrous cruelty to everyone else. But most especially to the soon-to-be- demented and the actually demented.