Right To Die discussion

[nona]

There is an interview in NH tonight with Diane Rehm, who wrote a book about both sides of the Right to Die debate.

 

[Fusia]

I was going to take a look at the book you mentioned, but I'm wondering what you learned from the author's interview.

Here in Montana, there is actually no Medical Aid In Dying (MAID) law on the books. However, the Montana supreme court ruled several years ago that there are no state laws and nothing in the state constitution that would prohibit it. Just this past week, I had an appointment with my PCP to start the discussion that I wanted that option down the road. She is on board with it and willing to work with me. HOWEVER, she told me that there is currently a state senate bill that specifically prohibits MAID, which would put doctors in jeopardy of homicide charges. After a little research, it looks like it is likely to be passed and signed by our governor.

I understand from the many discussions on this forum that I do have other options for having some control over end of life. But, this makes me so angry, that some religious nut job with no critical thinking skills can facilitate this legislation which could profoundly impact a small handful of people by taking away a shred of control they may dearly want to retain.

 

[GXTrex]

MAID is giving medication that leads to death. Would someone not in a MAID state be allowed to refuse care to the same effect?

An individual is always allowed to refuse a feeding tube /NIV/Trache right? What if they already have a NIV and would like to turn it off and have nature take its course for instance? Is that allowed in all states?

I of course agree MAID should always be an option for all PALS and others with certain medical conditions. Unfortunately my PALS does not live in a MAID state so i want to make sure I can relay accurate information to him when the time comes.

 

[Nikki J]

A person can always refuse care. They can also refuse to continue something ( like feeding tube or breathing support).

unless a person is virtually dependent on ventilation it is not going to be like MAID. MAID people take the medication go to sleep and die within a very few hours at most.
There is VSED when one stops eating and drinking. Even when accompanied by heavy medication this takes days.

that is not to say there are not legal ways to have a comfortable and dignified death without MAID because there are but it isn’t the same.

 

[lgelb]

Let me put it this way: >99.9% of comfortable, dignified PALS deaths with the aid of drugs take place outside MAID.

So, while I agree that legislative attempts to manage the doctor/patient relationship are misguided, they're not really affecting anyone's right to that kind of death -- unless news articles lead people to scare themselves away from helping others or seeking help, which is definitely tragic and why the subject deserves wider exposure.

MAID involves the physician, explicitly. That is where legislators and others often have a hard time, for all kinds of hot-button reasons.

But the 99.9% of deaths that don't entail the use of MAID laws don't involve physicians' knowledge, presence, or participation. They're between a caregiver and a PALS, and simply leverage a previous drug supply that was prescribed for a legitimate medical indication (air hunger). Titrating morphine so as to minimize air hunger hastens/causes death, as has been known since its manufacture began.

I too hope we get past "don't ask, don't tell," but while that is the framework, P/CALS should know and be prepared to exercise their options as they may but need not so choose.

 

[KevinM]

For many PALS, compromised respiratory issues and accompanying air hunger that would enable a prescription of morphine often come at the later stages of the disease. For some (certainly not all) who have lost limb function but do not have breathing issues nevertheless might consider their quality of life unacceptable. In that case, a peaceful death at the time of ones choosing becomes complicated.

There are ways, of course, VSED being one (not preferable in my opinion) but finding a doctor to prescribe significant amounts of morphine absent air hunger in this day and age of very strict opioid control is going to be extraordinarily difficult, at least from my private conversations with a couple of physician friends. Kevin

 

[GXTrex]

Can hospice distribute opiods? My PALS is considering no PEG/NIV/Trache. He is having issues swallowing so it looks like that will go before his breathing.

If he does not get a feeding tube, can he go on hospice care and get meds to alleviate suffering? He would at the time have less than 6 months to live, but obviously that would not be the case if hospice assumes or requires a PEG and he wouldn't qualify?

 

[Nikki J]

Hospice patients certainly can get comfort meds as needed. and a feeding tube would not be required by hospice. I have heard of the opposite - them refusing someone with one considering it life prolonging though I believe it is rare.
if he ends up choosing hospice at some point you can interview several and try to make sure their philosophy matches yours.

around here it is common for hospice to get the actual prescriptions written by the patients’ pcps. Hospice will have a medical director physician but the pcp is usually called with recommendations I believe it is different elsewhere

 

[KimT]

I think it's very cruel to force a person to starve to death or withdraw breathing support just in order to die. Find a good pain management neurologist who has had ALS patients and that might solve the issue.

Hopefully, laws will change as we evolve.

Consider writing letters to your representatives and voting for people who really value the right to choose.

 

[lgelb]

Kim, no PALS has to starve to death or withdraw BiPAP in order to die -- that was the point of my post.

 

[Fusia]

Laurie - could you address the hypothetical situation that Kevin outlined above, when a PALS may not yet have significant air hunger in order to be prescribed morphine, but they consider their quality of life to be unacceptable…

 

[lgelb]

Well, first off, we're not talking bottles and bottles -- just one, the fractional dosage depending on the concentration. Morphine comes in different strengths.

Second, most PALS in the situation Kevin described gradually reduce eating and drinking of their own accord, requiring less intervention at the end.

Third, if a P/CALS contacts the physician and reports significant air hunger, it would seem difficult for a physician to dispute. Contrary to the movies, PALS with air hunger breathe more shallowly and are more restless, but they are not typically gasping for air because they don't have those kind of muscles or strength.

Of course, a new opioid rx will require having seen the patient within the last few months, but air hunger (which sometimes manifests as sudden weakness, depending on how the body compensates) is well-established as the ALS end stage, and likewise often begins without transition from "stable on BiPAP." There is a set point for CO2 buildup that is not reversible.

I am only advocating expressing truths, e.g. "I/she is no longer comfortable and is not breathing as well as she did." If the PALS is not yet on BiPAP, it is also no less than the truth to say that s/he does not wish to take that on, if that is the case.

Again, though even physicians can be unduly concerned about prescribing opioids based on news stories, none have been prosecuted for what we are describing. Admittedly, not all have the courage of conviction to deal with eprescribing and pharmacy systems that may require some "hoops," but for anyone treating a PALS, whether a primary care physician or neurologist, the odds go up.

Fourth, as some here have experienced, there can be a practice of using morphine in small doses early on to ease breathing in advance of overt air hunger. Frequent or severe coughing is often addressed with codeine. So perhaps establishing a relationship with a physician for whom those protocols are familiar would also be an option.

Fifth, it is hard for me to imagine that within a given area, there are no legal options in human medicine. But if there are not, there are other contexts in which it is only truthful to say that someone is uncomfortable and needs more help than they have received.

These are just a few thoughts. Situations differ. If anyone needs creative ideas, I'm always here.

--Laurie

 

[affected]

I would just add here that this is where it really is important to get a good relationship with your main health provider, that may be your PCP or what we call the GP.
In Australia we register with palliative care too, and this actually lifts all legal issues. What I mean is, if you are registered as palliative in Australia, and you die at home, there is no police, no investigation. All I had to do was call the funeral director who came and picked up Chris's body (and I waited hours as he died at 2am and I had no need to have things happening in the middle of the night. In fact I had showered and watched the sun rise after spending beautiful quiet, goodbye time with his body). He then took his body to our GP, who came out and certified him deceased in the hearse. Very simple and dignified really.

But wherever you are, if you get a good doctor, and develop a relationship NOW, when you feel you are approaching a time you might consider options, you have someone you can trust and discuss all aspects with. These discussions are worth having early, not suddenly at the pointy end.

 

[KevinM]

I still come down on the side that having a physician prescribe morphine (I did not mean to imply bottles and bottles with my “lots of morphine” comment) outside of hospice-and every hospice is different-will be challenging, much more so than it was even a few years ago.

Depending on where you live, finding a new, more sympathetic physician—especially another general practitioner—is incredibly difficult. There is a huge shortage of them, and in my area many are not taking new patients.

Kim, I appreciate your comment about finding a pain management neurologist, but that too may be practically very difficult, especially after being with your ALS specialist/clinic for some time. And if you can find a sympathetic new PCP or neurologist, appointments may be months later.

 

[Docrobin]

Hospice would support someone refusing a PEG and if “the prognosis is less than 6 months if the disease follows its expected course” then they would qualify for hospice