In the Middle of a Revolution on Death

The Revolution is upon us

The recent Washington Post article, “We’re in the middle of a revolution on death” is gently thought-provoking and describes a trend that we hope will become the reality for more Californians.  Specifically, those who are facing terminal illness and wish to spend their last days not in an induced coma, in agony tethered to life support in a hospital, or suffering excessive medical intervention and expecting a miracle. Instead, these patients are offered the option to die in their own home with access to medical aid-in-dying and surrounded by loved ones.  In California, the good news is that medical aid-in-dying became available to the terminally ill via the End of Life Option Act in June of 2016. However, the reality is that many of those who might choose to access this law have neither the information nor the support they would need to obtain the prescription when it could make the most difference.

“Don’t tell me what I have to do.”

As Dick Shannon, the subject of the new HBO documentary “Alternate Endings”, released by HBO August 14, 2019, plainly states:

“My observation about the way people die, at least in America, is they are not allowed the opportunity to be part of the process.  For my way of thinking, the part that bothers me immensely is not being allowed to be part of that process. It’s my death. Go with what you believe, but don’t tell me what I have to do.” 

Our Mission

That, in a nutshell, is the mission of End of Life Choices California: to bring more attention to these issues in our populous state. We aim to make sure that BOTH those seeking medical services and those providing medical services are working with the same information and understanding when it comes to these critical discussions about end of life decision-making.  Our goal is simply to help more Californians, in clear, honest and informed communication with their physician and family, decide for themselves how they will die with their dignity intact and leave a peaceful legacy for their loved ones.

I am looking forward to seeing this new documentary.  It looks like it will be just the kind of film we will want to include in our resource-rich website, endoflifechoicesca.org,  which is designed to assist anyone (patients, hospices, nurses, physicians, journalists) seeking information about California’s End of Life Option Act.  The site, also offers other end-of-life planning tools to help individuals take control over how they die, in the same way they have engaged in their life.

End of Life Choices California offers information and personal support to anyone seeking help facing end-of-life decisions through our state-wide volunteer program. You can read about our services here.

 

The Elephant In The Room

Photo Credit: Bizarro Comics

CAN WE TALK ABOUT DYING?

By Lynne Calkins

“Make friends with death. Get comfortable with it, and you will have a much fuller, happier life.”  Seriously? Sounds kind of weird, doesn’t it? Who wants to be friends with such a taboo subject? Sounds kind of scary, maybe makes us a little sad.

Death is definitely “the elephant in the room” that no one wants to talk about, especially while we are young and healthy but also when a loved one is seriously ill.

I recently heard Dr. Bob Uslander, of Integrated MD Care in Del Mar, CA (and a member of End of Life Choices California’s Advisory Board) whom I greatly admire say, “make friends with death” on his regular podcast.  Dr. Uslander is considered an expert on death and dying and living. He is a palliative care physician who helps people with chronic, serious illnesses feel as good as possible and enjoy the last chapter of their lives as much as possible.  Often, these are people who, even though they do not want to die, accept that it is inevitable, and they talk about their dying, that “elephant in the room,” and how they envision it. They have taken control over their dying; they feel lighter, empowered.  “Dying is the one thing we all do,” he says, so why not embrace it?

What does he mean by “get comfortable” with death?  I believe he means that because we all die, we should bring this topic out of the closet, shine a light on it, and talk about how we would want our dying to be.  I know that for me, like most people, I would like to die at home, with my husband at my side. I have talked about it aloud to my spouse and children and named the person to speak for me if I am unable to do so.  I’ve written it down in an Advance Directive (AD), signed it and had it witnessed. I have given copies to my husband, my children and my doctor; it is in my medical chart. This document clearly directs my doctor and family as to what I want if someday I cannot speak for myself.

I can honestly say that once I had done the above I immediately felt lighter, happier, and liberated; knowing that if something unexpected were to happen, and I was unconscious with no hope of recovery, my family will know what is important to me.  They will try to get me home. What my family doesn’t realize is that this gift to them helps guide them, should this situation ever occur.

There are numerous accounts of people who have said they want to die at home, but sadly, they never told their loved ones, never wrote it down, so when the time came that they were unconscious, from stroke or car accident, they died in a hospital, in an ICU, with tubes in every orifice of their body, because no one knew what they wanted, and the default went to the medical personnel.

Let’s acknowledge “the elephant in the room”:  Let’s admit that we are going to die, hopefully not soon, but that we will all eventually die.  Let’s get comfortable talking about how we would like to die, where we want to be, who we would like to be present.  Let’s have that conversation about death with our family, loved ones, and physician and get comfortable with that “elephant in the room.”  The sooner we do and write down our wishes in an Advance Directive, the more likely it is that wishes are respected. Our family and friends will be grateful to have the opportunity to help us achieve our goals.

Please go to our website  where you will find an Advance Directive form to download and complete.  Sign it, have it witnessed, and give copies to your loved ones and physician.  If you have any questions, or would like help completing an Advance Directive, please email us at info@endoflifechoicesca.org and let us know how we can help you.

With special thanks to Dan Piraro for permission to use The Elephant in the Room to help us illustrate so clearly the complexity of discussing our end of life wishes.

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Please Support Our Work

End of Life Choices California provides information and personal support regarding California’s End of Life Option Act and all other legal end-of-life options to the medical community and to the public.

But, Isn’t It Suicide?

When talking about medical aid in dying, the short answer?  No. Definitely not. But there is a better, more thorough answer.

The other night I was at a dinner party with eight intelligent, thoughtful people.  At some point my husband thought it was necessary to let everyone know I had become involved in starting a new non-profit organization.  He said this with great pride and of course, everyone asked, “What is this new non-profit?”. They seemed very interested and I, knowing what was coming, graciously answered by telling them about the national non-profit I used to work with that advocated for medical aid in dying laws and provided on-the-ground volunteer support to people who were facing terminal illness and death. These volunteers were trained to help them through the process, find the answers they were looking for to understand all their end-of-life choices, and if they qualified, help them access the End of Life Option Act, new to California since 2016.  I explained that this national non-profit closed down their volunteer support service last year, and a group of us decided to carry on the work here in California, on our own, and hence the new non-profit organization.

Of course, as always, the conversation stalled as people digested this information, and the gentleman to my right said “Well, that’s an uplifting dinner topic.”  I nodded my head, smiling, and everyone chuckled. Then he said, “But that’s suicide, right?”. Knowing this gentleman was a brilliant neuroscientist, I clearly and simply said “No, it’s not.”  And before I could explain, my husband, a man with excellent ears over the last few years of hearing me work with end-of-life issues, said “Suicide is driven by mental illness. Medical aid in dying is driven by a desire to control the time and place of one’s death, hoping for a peaceful death.”  Bravo, husband! He nailed it.

It’s true that many people, for many years, have thought of death with dignity or medical aid in dying as many things other than what it is.  Some of the terms we see and hear are “assisted suicide”, physician-assisted suicide”, or “euthanasia”. In this country and in the states that have legalized medical aid in dying, none of these are true.  It’s no wonder that some physicians are still uncertain and reluctant or fearful of being a prescribing physician under the law. I’m still astounded that in Oregon, after 20+ years of the Death with Dignity Act being in place, people (and physicians!) still either don’t know it exists or know nothing of how it works.  

It never fails to amaze me how much people actually do not want to talk about death.  Ever.  As if it will never happen to them.  Or that if they talk about it they might catch it and oh my gosh, then what?  But those of us who work in the field see death as just another part of life. Sure, it’s the end of our worldly life and sure, none of us really knows what comes next, but that is a personal journey to think about.  The fact is we all die. The question is “how do you WANT to die?” Many of us pass from this world without even having to think about it due to accident, trauma, quick medical deaths such as a life-taking myocardial infarction or stroke.  But a greater number, and a number getting bigger as medical technology improves, end up with chronic disease that will eventually terminate our lives. And that is where the work comes of knowing what our options are, including being able to ask our physician to write a prescription for a lethal drug if we have a terminal disease process in front of us that will steal our dignity, our self-sufficiency, our bodies and eventually our lives.  We don’t have to go down that road if we don’t want to. Or, we can travel that road as far as is acceptable to our own individual values, and then plan the day of leaving this world with our loved ones at our side, self-ingesting a dose of medication that will put us to sleep, then into a coma, and stop our heart and leave us in peace.


That is not suicide.  Suicide is a wish to die when an individual could otherwise continue to live.  There is cultural shame associated with suicide. Medical aid in dying is an intelligent, well-thought-out choice.  It is a decision to end our lives when we would otherwise wish to live, but that option is no longer available as disease is going to cause our death . There is no shame in that.  

End of Life Choices California came into being to provide sound information and personal support to people facing the end of life, either with serious or terminal illness.  There are many choices. They are spelled out on our website. I have no particular bias towards one choice or another. As a retired physician, I believe it is the patient’s right to choose what is right for themselves.  I have no idea what I would personally choose if I received a terminal diagnosis.

I think we can’t know until we truly walk in those shoes. But it gives me hope and peace of mind that I have options available to me and can choose medical aid in dying if I feel it is right for me.  

An interesting fact out of Oregon and Washington is that of all terminally ill people who qualify under the law and receive a prescription, only about two-thirds of them end up actually taking the medication.  They gain so much peace of mind and lessening of anxiety by having that medication readily accessible that they often are then able to relax into their dying process and never take the medication. I think this is an excellent example of successful palliative care.  

So no, medical aid in dying is not suicide, not by a long shot.  

End of Life Choices California is committed to being there when and if people need us. Our volunteer services are available at no charge to anyone.  We hope you will reach out to us via email or call (760-636-8009) with any questions.  Please share this information with people you know, people you love and your medical professionals.  And, if you are feeling generous, we would certainly welcome any donation to support our work. We are happy to give presentations to groups, large and small.  We wish you peace on your journey.

 

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Please Support Our Work

End of Life Choices California provides information and personal support regarding California’s End of Life Option Act and all other legal end-of-life options to the medical community and to the public.

Movie Review: Paddleton (2019 Drama/Comedy)

A friend recommended I watch the new Netflix movie, Paddleton, just out in February.  I found it to be a worthy watch for someone interested in the intricacies of death and dying. Actors Ray Romano (Andy) and Mark Duplass (Michael), depict two middle-aged men who struggle with society and relationships in general, and even more so when one of them is diagnosed with a terminal illness and chooses to access California’s End of Life Option Act and medical aid in dying.  

If you’re in a hurry, tired or sleepy, don’t watch this movie.  This is a film to relax into, as it is slow moving. It is an accurate portrayal of the struggle we experience when a loved one is diagnosed with a terminal illness.  The two men have an interesting and somewhat unusual friendship, and we see that in great detail as they grapple with Michael’s dying process and his desire to take medication to hasten his death.  I found it sweet and heart-warming at times, and sad at others.

However, there were some good questions that came out of it too, which I’d like to address:

SPOILER ALERT:  Reading further will ruin the film for you if you haven’t already seen it.

It appeared that Michael was able to easily obtain a prescription from his physician for medical aid in dying.  

This is generally NOT the experience in California, even though the End of Life Option Act has been in place for nearly three years.  Many physicians still will not prescribe, and many people wishing to use the law have great difficulty finding a physician who will. EOLCCA is dedicated to educating physicians about providing medical aid in dying to their patients and is committed to helping patients find physicians who will support them at this fragile time of their lives.

 

Why did Michael not have more support from health care providers, i.e. Hospice?  

I thought this was an important aspect of serious illness and dying that was missing from this film.  I realize it would have changed the film greatly, but still…. Hospice does wonderful work and provides excellent support both to people who are terminally ill and their loved ones. Hospice staff might have been present when Michael took the medication if the specific hospice allowed it; not all do, but many do allow their nurses or social workers to be there.  One could say that maybe it was a matter of affordability, as Michael did not appear to be particularly wealthy or might not have had good insurance. Those things would not have mattered in a real scenario because hospice care is covered by Medicaid or Medicare.

 

Why did Michael have to travel SIX HOURS to retrieve the medication?

Under the law, the medicine can be picked up by the patient, a designated individual, or mailed by delivery service (i.e., UPS/FedEx) if needed.  Again this worked well for plot development, but it is not accurate. It’s true that pharmacists, as well as physicians and medical systems, have the right to opt out under the law. So it is conceivable that there was no nearby pharmacy to Michael’s home that would fill the prescription. But it could have been delivered in another way.  

 

Why did Michael refuse the anti-anxiety pre-medication?

We don’t know what the writers were thinking, but Michael refused the anti-anxiety medication prescribed for him, which is a normal part of the aid in dying prescription protocol.  And he did end up experiencing a great deal of anxiety right before he died. This was his choice of course, and it is not for me, or anyone, to judge. However, it didn’t have to be that way.  The medical protocols that physicians follow in prescribing for medical aid in dying are very thoughtfully put together based on the opinions, experience and knowledge of many physicians and pharmacists in Oregon, Washington and California. They are also continually being improved. Every step is important, and our volunteers support individuals in following the prescription as written. It is the way it is for a reason.

 

Lastly, what I most loved about the film was the end.  

We all know dying is hard.  And it is difficult and painful to watch a loved one die, no matter the manner of death.  My experience in working with the dying in states where medical aid in dying is legal is that a death under those circumstances is almost always a beautiful death; a peaceful death.  Family members, friends and other loved ones are left with a sad heart, but a warm heart that they witnessed a peaceful passing from this world. I loved that this happened in the film, and that the two men were able to overcome their tremendous social discomfort and what looked like shyness, to share their love for each other.  It was a beautiful moment in the film and when it happens like that, it is always a beautiful moment in real life. I thought the film did a great job of depicting this important aspect of dying with medical support, at the time and the place of one’s choosing.