When You Don’t Have Access to Medical Aid in Dying…

As of Tuesday, August 27, an appeals court in New Jersey overturned the restraining order mentioned in this post, which halted New Jersey’s “Aid in Dying” law, now making it lawful for terminally ill individuals to request a prescription from their physician to end their lives.  This is great news!

This post, originally written with New Jersey’s law still in limbo, presents pertinent information regarding another end-of-life option for a peaceful death, should medical aid in dying either not be available or the 15-day wait process not be realistic.  

This news story was posted on August 23, 2019 and is a very sad, but important, read.  It explains why having access to life-ending medication for an individual with a terminal disease needs to be a viable, accessible option for all decisionally capable adults.  It is so sad that this woman in New Jersey, where a death with dignity law was just passed, cannot fulfill her wish to obtain the medication promised to her by her physician, in accordance with the new law, because one person is contesting the law and it is now “on hold” until it goes through the legal process.  

I wish End of Life Choices California could reach across the country and help her.  Perhaps this blog will find it’s way to her and her husband.  Because the truth is, there is more than one way to achieve a lawful, peaceful death in the face of an agonizing and incurable illness.  If Katie were in California and called us, one of our trained volunteers would meet with her and her husband to discuss her situation and all legal end-of-life-options.  We would explain that without medical aid in dying available, she might want to know more about using Voluntarily Stopping Eating and Drinking (VSED) as an option. Many people shrink back from this idea often because of a misunderstanding about the actual process and what it entails, even though it can result in a peaceful death.

Voluntarily stopping eating and drinking is the legal right of any person anywhere. There is no law that states you have to eat and drink fluids to stay alive.  That being said, it is absolutely NOT for everyone. And the best scenario of its use is for those unfortunate people who have arrived at a place in their lives where they find that the burdens of living with a terminal or painful disease far outweigh the benefits of living: when they have lost all control over their life, are suffering from intractable pain and know there is no hope of recovery.  

 It takes a strong and dedicated decision by an adult to choose to stop ALL food and ALL fluids.  It is not starving oneself to death. It is stopping all forms of nourishment, including water and other fluids, that pushes the body into a dehydrated state that leads to the kidneys shutting down and results in a coma and death.  Depending on the strength of the person and the strength of their heart, it can take from five days to three weeks. Some people have described an almost euphoric state in going through this process. In a person weakened by disease, basically bed-bound and already at a much lower weight than is usual for them due to their  illness, it is a shorter rather than longer process. But they have to be determined through the early symptoms of hunger and thirst which eventually pass.

At End of Life Choices California, when supporting a person choosing VSED, we always suggest the person and their caregiving team have their physician on board to prescribe hospice care for them if they are not already on hospice.  A person pursuing VSED can benefit from medical support with gentle anti-anxiety medication and other clinical practices to ease their symptoms, and hospice nurses are excellent in providing oral care to alleviate dry mouth and lips.  A simple swab of coconut or some other oil does the trick. Quiet favorite music, aromatherapy, massage and careful medical support all can contribute to achieving a peaceful death. 

Even though the California End of Life Option Act has made medical aid in dying available to terminally ill, decisionally capable adults, not all those individuals who wish to obtain it will be able to or they may run out of time trying to find doctors who will participate in their medical wishes.  At End of Life Choices California, we discuss all end-of-life options with our clients, as well as support them in their effort to access medical aid in dying or VSED even when the barriers seem overwhelming. We provide factual information and personal support.  You can find many resources and learn more about our services on our website.  If you are interested in learning more about VSED, feel free to give us a call, or go to this page on our website and read more.

An Act of Love

I was talking with my friend, Jen, today and she told  me about the death of her 96 year old grandmother. There were some important things she shared with me about the good death her grandmother had and the comfort she received from that experience.  

The first was when her grandmother was dying. Jen said that the day before her grandma died, she was visiting her and she looked like Grandma: beautiful skin, pink lips, bright blue eyes, shiny hair. However, she had congestive heart failure and as she was dying, her lungs were filling with fluid and she was having difficulty breathing. Her hospice staff put her on medication to calm and relax her through that process. Jen came back the next day to visit and was shocked and astounded by the change she saw. Grandma no longer was glowing. 

 

Her lips were pale, her face was gray. Even her hair looked different. And Jen realized in that moment that her grandmother was already gone and her body was just trying to catch up and leave too.  

While Jen admitted this was the scary thing about death; that people leave us, she wisely realized and accepted we all go at some time. None of us avoids death. It is part of everyone’s life journey. And that gave her hope.  She realized death wasn’t as scary as she thought. She understood that death is a part of life and that there are steps she can take to be prepared and communicate her wishes to her family and loved ones well in advance.

And with that new understanding, she realized that her grandmother had given her this gift too, by planning ahead. At about 85 years old, Grandma had sent Jen copies of her Advance Directive: including her living will, her medical proxy, and her DNR. She had explained them all to Jen. She had told Jen she wanted to die a natural death, at home, with comfort support only.  

Jen said, “Grandma sending me all those documents and talking to me about it was an act of love.”  I asked her what she meant. She explained that by knowing her grandmother’s wishes, and by knowing what to do next and where the bank statements and the will were, and how and where she wanted to be buried, and how she wanted to die, that Jen and her family didn’t have to worry about any of those details.. They already had the answers. Because of that, they were all able to be fully present with Grandma when she died. And to see, really see, the peaceful transition she went through as she died.  

Jen said it was a beautiful death and experience, and it made her less fearful of her own death.  She has since completed her own Advance Care Planning documents and shared them with her husband, parents, and siblings. Another act of love.

 

End of Life Choices California has trained volunteers who will give a free presentation for your group, large or small, about planning for a good death, and all the other things around dying that are important to plan for.  Check out our website for more information about Advance Directives and all the supporting documents. Our volunteers will also meet with you individually and help you understand the forms and how to fill them out.  Please call 760.636.8009 or email info@endoflifechoicesca.org if you have any questions or to schedule a volunteer.

Dealing with Dementia: What Do I Do?

 Alzheimer’s disease is one of the most common health problems people face in their seventies and eighties. However, did you know you can take certain measures before such a diagnosis to ease such a transition for yourself, your family, and your caregivers?

Let’s look at what we’re up against with a few eye-opening facts  by the  Alzheimer’s Association on the disease no one wants to think about:

  • Alzheimer’s disease ranks as the sixth leading cause of death in the United States.
  • Alzheimer’s disease eclipsed heart disease by a staggering increase of 145 percent compared to heart disease, which decreased by nine percent between 2000 and 2017.
  • 1 in 3 seniors dies from Alzheimer’s or other forms of dementia—more than breast cancer and prostate cancer combined.
  • More than 16 million Americans provide support as unpaid caregivers for people with dementias—that’s nearly five percent of the American population, equating to 18.5 billion hours in care, valued at nearly $234 billion.

Do you find these statistics as startling as I do?

To me, the scariest aspect of a dementia or Alzheimer’s diagnosis would be the slow but overwhelming loss of my memories. Of my family. My friends. My experiences. My life.

I can’t imagine being alive and not able to recognize the people and places I love.  Heart-breaking.  

Thankfully, we have some control over the impact of such a diagnosis.

First, tell the people destined to care for you the type of medical care you want if dementia becomes a reality. Please take a moment to study and complete the Dementia Directive. You can find it here.    With it, you access the opportunity to declare what matters to you when you can no longer speak for yourself. And while you’re at it, make sure you have filled out an Advance Directive with other medical wishes, and share it with your family, your physician, and update it annually. You can find the appropriate forms here for Advance Care Planning on our website. 

We also suggest you make a video of yourself (fairly simple on a smartphone) stating explicitly what you wish to happen and not to happen during this time. For example, if I have advanced dementia I do not wish curative treatment for any other illness or disease that might arise, in order to more quickly help me experience a peaceful death. This could range from a recurrent  bladder infection to a cancerous tumor. I would choose comfort care only and make sure my spouse and physician understood exactly what I mean by that term. You may choose differently. 

Have you given it any thought? 

 

Personally, I want to do anything and everything I can to PREVENT the disease rather than wait until it arrives.  Studies clearly demonstrate that we begin developing signs of dementia/Alzheimer’s long before symptoms occur. 

As a retired naturopathic family physician, I am trained to think about prevention. Regrettably, medicine currently knows of very few, if any, treatments for Alzheimer’s disease and other dementia diseases.  

For all these reasons, I feel compelled to share a TED Talk with you that opened a new line of thinking for me. I hope it will provide comfort for you, too.

 

On the Resources page of our website, we list the Oscar-winning movie, Still Alice, starring Julianne Moore, developed out of an amazing book written by neuroscientist and best-selling author, Lisa Genova. Her TED Talk on how to prevent Alzheimer’s disease will instill hope in you. Once exposed to her message, you’ll understand why and how to help your brain develop a bank of healthy cells and a thriving network of new neural pathways.

For me, in order to increase my neuroplasticity, I have decided to learn to speak French. Pourquois pas?  And in the meantime, I will complete my Dementia Provision, review it with my spouse and physician, and update it annually to account for life’s changes. 

 

Au revoir, mes amis.