Medical Aid in Living

People seeking MAID are vibrant, courageous, and thoughtful. They know who they are, define the rules of their life, and are clear on their values, including the meaning of living. My last visits with them are typically marked by a sense of clarity and peace.”

 

Benzi M. Kluger, MD, MS, Medical Aid in Living
JAMA Neurol. Published online August 24, 2020

Dear Readers,

We are sharing this excellent article from JAMA Neuro, recently published online, because it is a beautiful tribute from a physician to medical aid in dying (MAID).  For many people there is so much mystery about the process of medical aid in dying.  For some, as with any uncertainty, this can bring anxiety and fear to the table.  As someone who has worked with people facing their dying for nearly ten years, I never cease to be moved at witnessing the grace, courage and honesty that people show when facing end of life decisions. The author of this piece does a beautiful job of describing not only his patient’s journey in accessing medical aid in dying, but also those of others.

I had the honor of speaking to a young woman recently who reached out to End of Life Choices California.  At 35 years old, she is bravely facing a Stage IV breast cancer diagnosis for which she has been told there is no cure.  She is just realizing that she not only needs to plan her life, but needs to plan her death.  We discussed many things, but the one thing that I think brought her comfort was hearing about what it is like to actually die from taking a lethal dose of medication through MAID.  I shared with her that through the many experiences I have had over the years of attending MAID deaths, the overarching feeling I have always observed and experienced is one of peace.  When people who are already dying are given the chance to be in the driver’s seat of their experience, rather than allowing the disease to wreak havoc in their lives and the lives of their loved ones, there is a peacefulness that comes with that.  Family is present, love is shared, goodbyes are heartfelt.  The person dying is able to relax and be held in love as they die.

What more could any of us want, truly?

peaceful river scene

My experience with this is why I have stayed active in the field and why I helped spearhead the formation of End of Life Choices California.  In the article, the physician said the referring physician “had not developed a response to requests for MAID and did not know if she would participate”.  We see this all the time here.  Part of our mission is to provide education to physicians and hospices in order to help eliminate this major barrier to end of life care.  We can help a physician wishing to learn more about MAID by putting him/her in touch with other physicians who are experienced and willing to offer guidance and support.

 

We also encourage all individuals who are thinking about their end of life care and wishes to have a conversation with their primary or specialist physicians NOW.  These conversations take time.  Many physicians are still grappling with how to deal with a MAID request. It is important to identify a physician who will support your end of life choices, whatever they may be, prior to a time you are actually ready to act on those important decisions. Discussions about Advance Care Planning with family and physicians are helpful in this regard. You can find guidance on our website here.

California is making great progress.  The 2019 California Department of Public Health’s annual data report on the use of California’s End of Life Option Act showed that 37% more physicians prescribed MAID than in the previous year.  That gives us hope that we will one day be out of a job.  But for now, we continue to help those who contact EOLCCA looking for support and information about end of life choices.

If you would like to support End of Life Choices California’s work, please make a donation.  We are very grateful for gifts of all sizes.  Thank you.

 

Making COVID Lemonade


As I contemplate life on my porch in late-May 2020, I feel many different emotions.

 

As a nursing home and hospice physician, I mostly feel sad that so many of the people I care for are dying—often without the basic comfort of a family member at the bedside. I also feel concerned and sympathetic for those whose lives have been—and will continue to be—devastated by either the loss of a loved one or the loss of their jobs, mortgages, businesses, and the familiarity and comfort of ordinary life, which may never be restored.

I feel guilty that my dogs, who used to accompany me to work in the nursing homes every day, are not allowed to go with me now for obvious reasons. I am angry at the lack of a defined, dedicated response from our government to protect these precious vulnerable elders. I am distressed by the polarization of our population, the venom that is spouted based on political differences, the baffling anti-science movement, the baffling politicization of things seemingly as neutral as a drug, and the seeming irrelevance to some people of facts. And although we keep hearing this is going to be a marathon, not a sprint, I have the sense we are not far out of the starting gate, I already feel exhausted. With Zoom meetings all day, nonstop news coverage, and a constant stream of new information in the scientific literature, it seems like it’s all-COVID, all the time. And I feel a little guilty that for my family and me, this pandemic is mostly an inconvenience and not something that will wreck our world or create an enduring hardship.
lemonade

I am an Optimist

At the same time, as an optimist, I am trying to make lemonade out of all this. What might we gain from this pandemic? There are obvious tangible gifts, like the favorable impact on the environment. People have learned the importance of handwashing and how to do it correctly. The “great pause” has given people the chance to take stock, reflect, hold space, and perhaps appreciate some of the small things we usually take for granted. We have learned how to use digital technology more widely for virtual doctor visits—even palliative care visits and end-of-life advance care planning discussions—and for professional meetings, webinars, town hall meetings, and the like. When we are practicing social distancing, it is clearly a blessing to be able to commune with others even without the actual physical hugs and handshakes (which may become a thing of the past, sadly). Support groups like 12-step meetings (AA, NA, etc.) now have a large online presence that is invaluable for those practicing recovery from addictions. For health care professionals, online support for burnout is also available.

We have also seen a huge outpouring of charitable work of all kinds, and the heroic contribution of first responders and healthcare workers, who put their own health on the line in service to others—like the certified nursing assistants who work for close to minimum-wage salaries, doing the backbreaking but essential work of providing direct care to debilitated, frail, dependent elders and other chronically disabled individuals. Now more than ever, their efforts should be appreciated and celebrated. 

Advance Care Planning

And during this time when we have more family time (either in-person or virtual), and when people of all ages are dying of this virus, I know more families have taken advantage of the down time to reminisce about loved ones who have already died and to discuss their own beliefs, treatment preferences and what is really important to them. It is the perfect storm for advance care planning! There are many online resources to help families broach these subjects and have deep, meaningful and often healing conversations. With its devastating pulmonary effects, COVID has helped make discussion of intubation and mechanical ventilation more of a household subject. I’ve had multiple conversations with nursing home residents about their treatment preferences, and some of them now say, “If I got the coronavirus, I would not want to be put on a ventilator.”

lemonade

These are difficult times, and this is a cruel pandemic in many aspects—and we will continue to suffer the direct and indirect consequences for a long time to come. But over time, as the dust settles, I am confident that we will have learned some lessons and will come out of it changed for the better in many ways. Let’s be kind to one another, tell our loved ones we love them, we forgive them, we ask their forgiveness, and we treasure our relationships with them.

That is certainly a half-full glass of lemonade, right?  We will get through this together.


Karl Steinberg, MD, CMD, HMDC

Dr. Steinberg has been a hospice and nursing home medical director in the San Diego area since 1995.  He is president-elect of AMDA – The Society for Post-Acute and Long-Term Care Medicine, a past chair of the Coalition for Compassionate Care of California and past president of the California Association of Long-Term Care Medicine.  He is vice president of National POLST and sits on the National Quality Forum’s Geriatrics and Palliative Care Standing Committee, is a certified healthcare ethics consultant, nursing home medical director and hospice medical director.

We appreciate working with Dr. Steinberg on end-of-life care issues and look forward to our continued partnership with the San Diego Coalition for Compassionate Care.  (Dr. Steinberg is pictured above with his wonderful Tessa, Charlotte and Josie.)

Photography by Ghislaine Guerin and Chris Montgomery.

Physician-Assisted Suicide…. Not!

Every day my Google Alerts send me interesting articles about death and dying.  Some I read, some I pass by, but this one caught my eye. A medical student wrote a piece about the medical practice of “physician-assisted suicide” as a collaborative process.  While he said some interesting and powerful things, I was deeply compelled to provide information to him, and to his readers on kevinmd.com that the term “physician-assisted suicide” is incorrect. 

The following is my response to his article:

“I applaud Mr. La, an aspiring medical professional, for shining a light on medical aid in dying (MAID) in his recent article “Physician Assisted Suicide is a Collaborative Process”.  As he points out, MAID is becoming more available as states are increasingly legalizing the process. It is, in fact, a growing movement in our country that offers a humane and dignified death to those people in permissive states who are terminally ill, suffering, and wish to have a say in how they die. However, having attended many deaths as a volunteer with End of Life Choices California, and as a retired physician, I can attest that these individuals are clearly not suicidal, which we know to be a mental health issue where someone is choosing to die who could otherwise live. These brave people who choose medical aid in dying would give anything to keep living, but a debilitating, painful and terminal disease is taking their lives. They are simply choosing to end that life in a quiet and peaceful way, usually at home, surrounded by loved ones.  

Mr. La’s unfortunate use of “physician-assisted suicide” is outdated verbiage that is primarily used by people who are opposed to MAID.  However, I do not believe that he is taking a stance in opposition to MAID in his article nor condoning the practice as suicide. The laws that have been passed in each state are all very clear on this very issue.

For example, in my home state of California, the End of Life Option Act, Assembly Bill 15, is very clear that medical aid in dying is NOT suicide, euthanasia or any other term that blames the patient.  Medical aid in dying is a determined and seriously considered choice, with significant steps and oversight which must be applied to keep the law from being abused. The bill states that “nothing in its provisions is to be construed to authorize ending a patient’s life by lethal injection, mercy killing, or active euthanasia, and would provide that, action taken in accordance with the act shall not constitute, among other things, suicide or homicide.”

Another critical point to note is that pursuant to Section 443.18 of the bill, “death resulting from the self-administration of an aid-in-dying drug is not suicide, and therefore health and insurance coverage shall not be exempted on that basis.” Section 443.18 goes on to say “Nothing in this part may be construed to authorize a physician or any other person to end an individual’s life by lethal injection, mercy killing, or active euthanasia. Actions taken in accordance with this part shall not, for any purposes, constitute suicide, assisted suicide, homicide, or elder abuse under the law.”

If interested, one can read the specifics of the law here.

While we at End of Life Choices California will always defend the terminology of medical aid in dying in this way, another larger, national advocacy organization committed to improving care at the end of life, Compassion & Choices, is also very clear on the point of suicide vs. medical aid in dying.  Their accurate opinion can be read here: https://compassionandchoices.org/about-us/medical-aid-dying-not-assisted-suicide/

It is our hope, as a California nonprofit committed to providing information and personal support to people seeking answers at the end of their lives, that physicians will continue to educate themselves and become more willing to provide this important medical service to their patients at one of the most significant times of their lives. I believe it is the ultimate in patient abandonment not to do so.  If you are a physician wishing to learn more about MAID, please contact us at info@endoflifechoicesca.org and we will put you in contact with physicians who do prescribe MAID and would be happy to share their experience. 

Dr. Judy Neall Epstein
Founding Director, President
End of Life Choices California

                                                                                                      —

End of Life Choices California offers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California.  Please visit www.endoflifechoicesca.org.  To speak with one of our volunteers, please call 760-636-8009 or email us at info@endoflifechoicesca.org.  All our services are free of charge.

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Barriers to Medical Aid in Dying even when it is legal

A recent story about the firing of Dr. Barbara Morris, a courageous geriatric physician in Colorado who went to court to fight for the right of her patient to use the state’s medical aid-in-dying law, is yet another warning for those of us in California and other states who are working hard to lift the barriers to compassionate and timely access to medical aid in dying (MAID) for the terminally ill.

This latest incident, involving a physician who independently chose to prescribe medical aid-in-dying for her patient and as a result was fired from her job with a jointly run Catholic/Seventh-day Adventist hospital system opposed to MAID, is as unfortunate as what recently occurred in New Jersey where a single Orthodox Jewish physician had the power to temporarily stop the law from going into effect because of his personal faith-based beliefs.  

We have no wish to comment on religious preferences or practices, however, we believe that such barriers to health care do not belong in a democratic and compassionate society such as ours.  New Jersey Assemblyman John Burzichelli, one of the law’s sponsors, speaks directly to our concern when he says: “I have my beliefs, you have your beliefs, but don’t use the machinery of government to impose them on others.”    

Enough barriers are already built into the system.

The physical and emotional barriers most terminally ill individuals face in accessing medical-aid in-dying in California and other states that have adopted a law are already burdensome enough: family members opposed due to their own beliefs; physicians who have often been treating the patient for years and refuse to prescribe based on their own beliefs; hospices, social workers and health care providers opposed to MAID that won’t even inform a patient of their right to request the medication nor give the patient a referral to a health care provider who is willing to prescribe as stipulated in the law.  Moreover, the process to request MAID in California is lengthy and daunting, including a wait time of a minimum 15 days, which every individual, sick and debilitated as he/she is, must go through who wishes to ease their end-stage suffering with medical aid-in-dying. Oregon just wisely corrected this stipulation and those who are very near death can now access the law in a shorter period of time.

Are you a compassionate physician?

End of Life Choices California was founded on a belief system and mission: to enable those who face end of life situations to have access to ALL the information available and a support-system to make informed decisions about how they wish to die, including the option of medical aid-in-dying.  

We continue to search for more physicians throughout California to whom terminally-ill individuals can turn for compassionate care, understanding, and support of whatever end of life option they choose, including medical aid-in-dying if they qualify under the law.

If you are one of those compassionate physicians or a medical provider of any kind, we would love to know about you so that as we get calls and emails from people who need help accessing the California End of Life Option Act we can reach out to you and see if our client would be an appropriate referral.  In addition, if any of you, our readers, have had a positive experience with a doctor or hospice about end-of-life choice, and would like to share your story with us, we would be very grateful to hear from you. Ways to contact EOLCCA.  Thank you!

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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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.