A TGB READER STORY: Disposable! Where is the Outrage?
The Alex and Ronni Show – 21 August 2020

Answers to Your Questions About Medical Aid in Dying Drugs

There was a lot of interest in last week's post about the medical-aid-in-dying (M.A.I.D.) drugs that were delivered to me and quite a few questions so I am going to answer them as best I can in this blog post.

If you have additional questions, please leave them in the comments below and I will check throughout the day and respond in the comments.

From Wendl:
”I must add that the first thing I thought when I saw the photo was, 'Uh-oh, how difficult will these caps be to take off when it's time?'”

Ronni: Exactly, Wendl. When the pharmacist asked me the question about child-proof or easy-open caps, I had a sudden vision of myself ready to go, weak, tired or maybe in terrible pain struggling to get the caps off - maybe dropping a bottle in the process and spilling the contents.

A related issue was that I might forget where I stored them. It happens to me all the time in my dotage that I put something in a place I think I am certain to recall and then can't find it later. So I've written down the location of the M.A.I.D. drugs in a notebook I use every day and have told two people where they are.

From Bonnie:
"Just looking at those bottles is scary to me. I would have thought, one, maybe two, but good grief what is in that large bottle? Something to make a cocktail?”

And from Irma:
“4 bottles?? Is there a certain order to it?

Ronni: Yes, there is an order to taking the drugs. The first two are anti-nausea drugs, the others are the M.A.I.D. drugs all taken in a certain sequence with a specific amount of time between each that adds up to a total of an hour.

The powders are mixed with water or apple juice or whatever liquid I choose.

Oregon law requires that I must do the mixing personally and be able to drink the mix without assistance.

From Kate R:
”Will someone with hospice be with you assuming there is a sequence in taking the drugs? Does this insure a quick death? You've been very frank in sharing your journey Ronnie, so my questions are also very frankly asked.”

From Mary Smythe:
”Can you proceed to just take the drugs (I assume the instructions are there), or do the three people you refer to have to be present as witnesses?”

Ronni: There is no requirement that anyone be with me when I take the drugs but as I noted in the original post about the M.A.I.D. drugs, I do want three people with me – my good friend, my palliative care provider and, probably, my hospice nurse.

According to my doctor and the pharmacist, after drinking the final mixture (the big bottle), I will fall asleep within a couple of minutes. In fact, it is so quick my doctor advised me to be sure I have said my good-byes before I drink the last dose. Death usually takes place a few minutes to an hour later.

From Yellowstone:
”Question now is, what degree of pain will allow you to 'pull the trigger?' Who will be there to decide for you when you can't? What suffering or remorse will we all have once we have lost you?

Ronni: I can't answer your third question, Yellowstone, but I surely hope no TGB readers will suffer or feel remorse. You have no reason for that. I even hope you won't be too sad. Death comes to all of us and we here at TGB have already had a long goodbye.

To your second question, the entire point of the medical-aid-in-dying law is that the patient and only the patient decides when the time is right to take the drugs. In fact, a physician had to certify that I am of sound mind before they could be dispensed. And the reason only I can mix the drugs with liquid and lift the glass to my mouth on my own is to help ensure that I have not been coerced.

Your first question, how will I know when the time is right, is important. I have discussed that with two doctors and a nurse all of whom have been present at patients' deaths by this means.

Each of them have told me that I will know. All of them said that with each person whose death they attended, they believe the patient chose the time well.

I don't believe the timing is about pain necessarily. It might be that I can no longer care for myself, am bed-ridden or can no longer do the things I enjoy like writing this blog.

I'm just going to trust that like all the patients they discussed with me, I too will know when the time has come.

Many commenters on last week's post mentioned my willingness to share what I'm going through. I made that choice soon after diagnosed in 2017 not quite sure, then, that it was the right thing to do.

But now I think it is important and that I have been able to contribute to the conversation around cancer, other ailments of old age and the inevitable end we all face.

That's not common – the conversation - at least not in the United States. Many people refuse to discuss death and dying so that when they are confronted with it – their own or a loved one's – they have no knowledge or understanding or even, I have noticed sometimes, a place to start.

Maybe these pages, ongoing for as long as possible, will help in that regard.

Nine states – California, Colorado, Hawaii, Montana, Maine, New Jersey, Oregon, Vermont, Washington state - and the District of Columbia allow medical aid in dying.

You can find local information by searching “death with dignity” and a state's name. Compassion and Choices is an excellent organization whose website is packed with good information about the subject.

From Tim Hay:
”How can we Thank You? We cannot.”

Ronni: You are right, Tim, you cannot thank me and there is no need. I get as much out of reader comments here as you do so things go both ways. What you can do is continue the conversation elsewhere when it is appropriate.

We need to make death and dying part of living, to not let it continue to be a secret. Medical aid in dying is not for everyone but it should be available to everyone which seems to slowly be happening in the United States.

Keep the conversation going.

Comments

Thank you, Ronni - for this posting and all the others stretching back to 2004. Your thoughtfulness and sincerity come through with every sentence. I am pleased that writing your blog is one of the things you enjoy doing. We readers gain so much from it and from associating with you and your multitude of followers.

Ronni, come on, let us be sad! :) You said this to Yellowstone: "I even hope you won't be too sad. Death comes to all of us and we here at TGB have already had a long goodbye." ...But as YOU know and have written about many times, it's different/more difficult when it's really happening. Grieving is a part of living and loving. I, for one, will grieve you and be sad -- and you won't be able to stop me!

Will you do a final post letting us know “today is the day”, or will we know only after you have died. When I read this sentence, it sounds so blunt. I mean no offense.

Hello Laurel...

First, you're not being blunt. It's a good question. I have thought throughout the years of my cancer, etc. that I would write a "farewell post" to be published after I've died that includes a lead-in from my good friend Autumn who cannot be with me when I take the drugs thanks to COVID-19 because she lives on the east coast and an airplane trip is out of the question. It's just not safe enough.

I had not thought about a "today is the day" post but I suspect not. I will certainly not be taking the drugs until life becomes too difficult to go on which implies that perhaps I will not be able to muster the energy at that point. But what do I know - I've never done this before.

Pretty much from the beginning I have intended to write that "farewell post" and I do hope I get around to writing it. Whether before or after, you will know when I've died.

As long as we're being blunt here. If there is a conscious hereafter, will you feel cheated if death takes you before you are ready?

Ronni,
I know you have friends who have known you for longer than I, but we do have a trail of history that has followed me for decades. I have fond memories of Mary's, Alex's, Yours and my times together in the 60s. I can still see Alex coming down the steps in the lobby of KILT with flowers in his hair. Then we'd all be on our way to some night-clad adventure. I love those memories. I'm so fortunate to have you as a part of my past as well as my present.
I do have a question: When you begin the process of taking the M.A.I.D concoction, if, by the time you get to the 4th container, you change your mind, is that an option? Heaven knows why you would, by that point, but I'm just curious if there is a "turning back" point in which you might take a U-Turn? And if you do, would there be the possibility of having the medications re-dispensed at a later time?
There is no way I can convey my thanks and appreciation to you for your up-front honest and candid discussion about your departure.
You are loved and respected by throngs.
I'm glad to be a part of your throng!
Rob

Your statement about death in this country certainly rings true. It is truly a transition only that through the twisting of this society has obtained too many connotations of the macabre. It is a change, but the only journey one can make now without the fear of Covid 19!
I certainly appreciate your many explanations of the mechanics of "death with dignity".
The mechanics are almost a whispered secret that only today's internet can open to us.
I'll miss your tomes, but most of all your ear to talk to. I realize you read all these comments daily and it is only here I can express my thoughts developed over the past decades. You have become my morning constitutional and an important facet of my consciousness. Until you depart, I'll read your blog each day. Thank you. B

In Canada, patients choose if they want to self-administer or have a physician administer life-ending medication. Most Canadian patients elect to have a physician give them the IV meds that will end their lives. They are assured of quality control, if you will.
Since the US doesn't have universal healthcare, and insurance doesn't cover medical aid in dying, most US physicians do not attend the patient's death (they can't bill insurance for this service).
In California, as it is legal, my dad's doctor mixed and handed him the meds to drink. We sat in the living room with Dad while the doctor mixed the meds in the kitchen. It was a great relief to us, and we were certain that everything was done correctly; the outcome was quick and painless, as Dad wanted.
As a result of our family's positive experience, I became a volunteer for Compassion and Choices. My story is on their website. I'm happy to talk more one-on-one with anybody who has more questions about my father's M.A.I.D. experience. Ronnie, you have my permission to give out my email.

Okay, so there was this cool woman who lived a rich and fulfilling life. She was smart and sharp as a whip. Among her many accomplishments, she started a blog on what it was like to grow old. She wrote about all relative things for many years. And then she got sick. Lucky for her readers, she continued to share her experience. Some of that experience was tough to tell and tough to read about, but she soldiered on. And we thank her for that. We thank her for teaching us what the dying experience might be like. We thank her for telling it like it is, including her hopes and fears.
We all got a peek of something that is usually not discussed. Thank you, Ronni. May your transition be smooth sailing when the time is right.

Just curious, but how exactly do the drugs work? You mentioned the two anti-nausea meds, so I assume that's to keep you from throwing up the following drugs. You mentioned a certain order and then the last one will work fast. Just wondering 'how' they work? Do they depress breathing, the heart? Then the last one puts you into slumber? My husband currently has a terminal cancer (a very rare one). It's been two years now, with 6 months to a year left. He will most likely pass from a bowel blockage. We already have him on Palliative care with a move to hospice available with a phone call. It is hard to watch him go through this. Your column gives me insights that I would never have had, and I thank you Shari in Wisconsin

I can't begin to express how much you sharing this journey has meant to me - your candor, honesty and yes, sense of humor throughout it all. Have to say, I hope I will get to meet you on the 'other side' but until then, I am grateful for in a small way, sharing this journey with you through your words. Big (but gentle) hugs.

Dear Ronni,

As usual your candor is welcome and enlightening to us. You must know that after you make your decision to die that you will be sorely missed by this large family you have gathered together over the years. Those of us who remain will go forward with so much vital information which we have gleaned from your many years' worth of postings. Your insight and generosity are appreciated.

Of course, we will miss you. But I think none of us would wish you to hang on longer for our benefit. We don't want you to suffer needlessly; knowing there is no further treatment for you. That you have been so honest while sharing with us is a gift which I hope we can all share with others in our lives. Pay it forward!

Thank you, Ronni.

"Medical aid in dying is not for everyone but it should be available to everyone which seems to slowly be happening in the United States."

Your comment is so on point. To have that choice is crucial. Your conversations with us are both needed and valuable. Where I see an obstacle is where someone, who doesn't want medical life-prolonging intervention, can't make that choice because they are incapacitated but yet are not allowed to be physically assisted to end their life. So if I knew, with certainty, that I wanted to end my life, but lacked the physical strength to mix the cocktail or perhaps to swallow (stroke, for e.g.) I wouldn't have that same option as you currently do because I'm too feeble or incapacitated to self-medicate, even though my mind would be aware but unable to carry out my own wishes. Wondering what your thoughts are on that particular challenge.

Each morning when I get up, I check for TGB hoping that you will have posted something and that you are still among the living.

But, I realize that is selfish on my part... I don't mean it to be, it is just that I, and we all, have learned to appreciate you, and we care.

I would do exactly as you are doing if it becomes my option one day. I congratulate you for your wisdom, and your ability to help others, if we are given the same opportunity at some future point.

Oh yes, I hope you stay... as long as you can. And that is selfish, I know. And, when the time comes, I wish to send you on your chosen way, with much love and appreciation!

Bruce Cooper asked: If there is a conscious hereafter, will you feel cheated if death takes you before you are ready?

I'm not certain what you mean, Bruce. Cheated that I wouldn't get to use the drugs? I can't feel cheated by just up and dying one day. That's the universe speaking and I have no say in that.

One way or another, I'm going to die relatively soon. Whenever, however it happens. I won't feel cheated.

Rob Landes asked: When you begin the process of taking the M.A.I.D concoction, if, by the time you get to the 4th container, you change your mind, is that an option?

The doctor and pharmacist were both very clear about this: If I stop the drugs part way through the sequence, I will still die but it will be painful and lengthier. So no, not a choice.

Good morning Ronni! Finally got a chance to start reading your blog-going to call you shortly to see how you are and offer a visit. Full disclosure: I am the hospice spiritual care person on Ronni’s Care Partners Hospice team. I have only had the pleasure of meeting you once Ronni and hope we can again.

May I chime in briefly on the questions and answers above? First, I’m glad you’ve got the DwD (Death with Dignity—this is the name of the law in OR) meds in your possession. That’s what you wanted and now they can be set aside and used when and if you deem it the best path for you. Very often that is the most important step someone takes: knowing they have the option to use them if needed brings huge emotional relief. Research has shown that a large percentage of patients who get to this point in the lengthy DwD process do not actually take the meds. Why? Their symptoms, physical decline, and perhaps fears are alleviated enough by hospice and their own support people that they have a natural death—quiet, peaceful, and just want they wanted.

End of Life Choice Oregon is the spin off from Compassion and Choices which serves patients and their loved ones as they consider and use the DwD law. I hope you’ve had a chance to check out their website and talk with them. Your nurse and I were just with another patient who used her meds last week and 2 volunteers from the Salem group were present. They told me that EOL Choices is now back in homes helping patients with the meds. This was great news! That is one of the best services they offer—in addition to education.

The best thing they do is mix all the meds for you and watch the clock so that all goes smoothly as you take them yourself. I hope you will use that service. OR’s law allows anyone to mix the meds—it’s just that it is a difficult task as your friends here have pointed out. Much better for someone else to do it. And to have someone who knows all the rules and is independent from you Is also a blessing. Now: that’s my opinion because I think it would be very hard for a close friend or relative to do that no matter how much they love you and are committed to your right to choose your end-of-life.

And for those reading this, each state designs their own DwD law though the OR legal example is the one most often followed. After all, we have over 20 years of experience with it and have not had any problems. Other than I think yearly challenges to it from those who believe it is immoral or unethical. In my opinion it is neither. I advocated for it to be passed in Vermont when I lived there, and after years of work I am proud that they did pass it a few years ago based on OR’s law. Compassion and Choices remains the premier organization doing the work state-by-state to help all Americans have the right to have the full range of choice in how their lives come to their natural conclusion.

Thank you for this blog. I look forward to reading lots more!

Excellent post Ronni. Your willingness and ability to field all of the questions is admirable. I have witnessed much death in my career (operating room-lots of trauma), as well as my Dad, Mom and BIL. Peace and dignity matter. My oldest brother died by suicide shortly before Dad of his lung cancer-that was awful. And a fact. Mental health matters!

You're so right. Discussing death and dying in this country is lacking. I talked a lot after Dad died in 94 when I was just 33. And I've never stopped. These are facts of my life and are a big part of my compassionate nature.

I look forward to every day and wish you comfort and peace each day.

Liz Knapp tells us that in Canada, a patient can choose to have a physician administer the drugs. Liz says that in California, her dad's physician mixed and handed her father the drugs. I'm sure that each of the 10 states and District of Columbia have varying rules and protocols.

Liz also says that "most US physicians do not attend the patient's death (they can't bill insurance for this service)". Setting aside her cynicism, two of my physicians and the physicians' assistant who has worked with me for two years each offered to come to my home to be with me when I take the drugs. I know their offers are genuine.

Shari asked how exactly the drugs work? You mentioned the two anti-nausea meds, so I assume that's to keep you from throwing up the following drugs. You mentioned a certain order and then the last one will work fast.

Shari is right - the anti-nausea meds are what you expect them to be. I haven't asked for a detailed explanation of how the death drugs work because I'm not interested. I know only that they stop the heart first.,

As always, Ronni, thank you for sharing.

Janet Spiegel does not have a question but she made this point: "Where I see an obstacle is where someone, who doesn't want medical life-prolonging intervention, can't make that choice because they are incapacitated but yet are not allowed to be physically assisted to end their life."

Exactly. I don't have links handy but I have read two or three articles in recent weeks from medical professionals or people from allied fields discussing this difficulty and the need to find a solution.

I agree. The wheels of this issue of medical aid in dying grind slowly but at least some people are working toward fixing it.

Diane F. Scholl may have confused readers when they came across her reference to being with my hospice nurse a week ago. Diane is a member of my hospice team.

She tells us that the Oregon law allows anyone to mix the meds. I'm not going to argue with her - she works in this field. But two physicians did tell me I need to do it. So I'll clear this up before the times comes.

Thank you, Diane.

Sadness is my overwhelming feeling now. The world, your death, mine as I am in the eighth inning and so grieve leaving this beautiful, interesting and wounded world. It also occurs to me that choosing how we will die is only available to some. Living in a certain state, knowing that there are options for dying, some money, some decent health insurance and medical care, family and friends who do not interfere. I guess another form of privilege and caste.

Ronni,
Please do not ask us not to be sad. Each post I read makes me aware of your place in my life. We WILL be sad and we will grieve. To me, that means you are still alive—in our hearts and in our memories. I wish for you to be here as long as YOU want to be and as long as you are comfortable and at peace. I am so happy you have plan in place to end it all when you are ready.

But make no mistake you will be grievously missed. There will be sadness across the internet and we will not forget your generous sharing of your journey.

It's becoming more and more difficult for me to read many of the comments here as I contemplate your departure from this earth. Meanwhile, thank you for all you're writing.

It’s so unfair that a few states offer this wonderful DWD or similar, but many do not. A person would have to move out of his or her home and safety net of friends, just to be able to get this humane service.

I’m in one of those states that will never have DWD provisions (religious South). So it forces suicide, or much more expense for life maintaining procedures that aren’t wanted. A living will only goes so far. I do believe advanced Alzheimers should be considered terminal and a person should be able to do in advance, a desire for DWD for this and with medical help in doing so.

I envy you and wish you peace.

What happens if unexpectedly you are no longer capable of doing it yourself? For instance you get a stroke overnight and aren't able to swallow? Does your arrangement have a back up plan, so they can administer it by IV?


"But what do I know - I've never done this before." Love it! (Love YOU, Ronni.)

"What you can do is continue the conversation elsewhere when it is appropriate." This is exactly what I have learned from you to do. Love ya!

A few readers commented that it was difficult to read this post and comments. For me, it is the opposite. I am riveted. And I’ve never felt more alive, involved, attached, and interested. Nowhere have I read or heard a conversation as candid as this, not even in novels.
You are breaking ground even as you are going out, Ronni. What a way to live (and die!)
Will your farewell column allow for comments so that we may be “together” one last time? Sort of a “virtual wake”? (I plan on raising a toast, myself)
Keep on keeping on, until you decide not to,
Linda

Here's a question from Adie van der Veen:
"What happens if unexpectedly you are no longer capable of doing it yourself? For instance you get a stroke overnight and aren't able to swallow? Does your arrangement have a back up plan, so they can administer it by IV?"

Adie, I have no idea. It hadn't occurred to me and of course, it should have. Plus, I really want to know. When I find an answer, I'll let all of you know.

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