Do You Have an Advance Directive?

Although conversations about Advance Care Planning may seem awkward at first, they often bring family members closer together. 

Talking about death/end of life is deeply personal. Sharing beliefs and desires with those closest to you produces a more intimate relationship.

It takes courage to have these conversations.

It demonstrates your love and deep caring for one another.

couple talking

Advance Care Planning is a process of conversations and directives for all adults that express your health care goals, values, and wishes in case a time arises when you are unable to speak for yourself due to injury or illness.

Here is one way to get The Conversation going:

Q:  Do you have an Advance Directive?

A:  Common responses to that question, with various levels of comfort: 

two men discussing advance planning
  1. A what?
  2. I should but…
  3. I think so?!
  4. Yes, but it needs to be updated.
  5. Yes, so glad!
  6. ……..Silence
    Which response is yours or that of your loved one?  If you would like to get busy creating your AD, get in touch with our volunteers at End of Life Choices California, and/or simply look on our information-rich website here. We will be glad to help you get going with this very important document.

Stefanie Elkins is a guest blogger and a Client Volunteer with End of Life Choices California.  She is also an Elder/End-of-Life Care Coach and Consultant.  Stefanie can be found at Be Present Care in the Los Angeles area.

Honoring National Healthcare Decisions Day

Most of the work we do at End of Life Choices California involves talking with people about dying: addressing their fears, providing support with problem solving, helping them access the resources they need to plan for the kind of death they wish for.  Some people might find this kind of work challenging and even distasteful.  But we love it. 

We TALK about it!  So many people have said something to our volunteers along these lines:  “Thank you for your honest and frank conversations with me. No one has been willing to have them and I am so grateful and feel free from worry now.”

 

Talking to family about end of life choices

Another important aspect of our work is helping people do the necessary preparation in case of a medical emergency, or diagnosis of a serious or terminal illness.  This process is called Advance Care Planning.  We teach seminars on this and enjoy educating people on how to plan ahead.  

One thing people often don’t know or think about is this is important for EVERY PERSON OVER THE AGE OF 18.  All adults should have an Advance Directive and have shared it with their important people. 

A Gift to Family

Talking to family about end of life choices

Therefore, in honor of National Healthcare Decisions Day, on April 16, we are devoting the entire month of April to paying attention to these important matters.  Every week we will post a new blog on a different but related topic on Advance Care Planning.  If you read every one, at the end you will be an expert!  

Please join us in these important discussions.  

To find out more about Advance Care Planning on our website, go here.

To find out about volunteering with our organization, go here.

To make a donation to support our important work, go here.

 

When the Burdens of Living Outweigh the Benefits

When I read The Washington Post article’s title, “At 94, she was ready to die by fasting,” I thought “Oh no!”  Upon further reading, I learned that Rosemary Bowen did not actually fast, which by definition is stopping all nutritional intake, but rather, she voluntarily stopped eating and drinking, also known as VSED, to achieve her death.  That made absolute sense to me.

There is no law that says you have to eat and drink.

VSED has been discussed for decades within the right-to-die movement.  It is a legal option for anyone, anywhere. There is no law that states you have to eat and drink and on the flip side, no law states that you can’t stop eating and drinking if and when you are ready and have appropriate support.  In fact, in states that have adopted Medical Aid in Dying, there are many people who don’t qualify for the law with a terminal illness, thus VSED is a viable option for them to consider. It also continues to be an option for people in states without such a law, should they come to that very personal conclusion that the burden of living has become greater than its benefits.  

I thought Rosemary Bowen’s was a perfect example of a graceful death through VSED.  I’m glad her daughter found it in her heart to support her mother’s choice, to film her, and then publish it in order to share her mother’s experience.  As a society, we need more opportunities to talk about death and where possible, how one chooses to die.

Understanding VSED

Unfortunately, Voluntary Stopping Eating and Drinking is often misunderstood.  One thing we know for sure, which gives me comfort, is that this is a natural process in the animal kingdom and in some cultures.  When it becomes apparent that an individual can no longer participate with the pack, they go off quietly by themselves to die by stopping food and water.  Knowing that this has occurred naturally for millenia makes the choice easier to understand. 

I recently spoke with an elderly and ill gentleman who had reached the conclusion that he was ready to die. He had stopped eating a month ago. He had lost quite a bit of weight and was angry that he was still alive.  When I suggested he consider stopping all fluids as well, based on my understanding of VSED, he expressed fear that it would be painful. While he was not taking in any food at all, he stated he was finding comfort in drinking water.  I explained to him the physiology of stopping both food and water: that the body could last for a very long time with no food (with that length of time being dependent on the amount of fat and muscle mass available to make energy) but with fluids stopped, the body would go into a severe dehydration state which would cause kidney failure and lead to cardiac failure in a matter of days to a couple of weeks.

Is VSED painful?

People worry that it will be uncomfortable and painful.  And, in my experience of seeing people go through this process many times, it can be somewhat uncomfortable.  Knowing that, we always recommend that individuals choosing VSED engage Hospice as soon as possible and also have supportive family and/or friends present 24/7 once they start the process.  Hospice will provide comfort measures with oral mouth care and ways of administering palliative medication other than orally, so no fluids are necessary to take pills.  The Washington Postarticle discusses this.  

This way of leaving the world is not for everyone. It takes a great deal of conviction and fortitude.  One must be absolutely certain this is what he/she wants to do.  The discomfort of thirst is strongest in the first three days, I’ve noticed. Then the person moves into a more dream-like state and the discomfort becomes secondary. Again, hospice support with body care and soothing medication is essential.  NO ONE SHOULD EVER DO THIS ALONE. People alone and on their own have gotten up and fallen due to weakness, and often ended up in the hospital with a fracture and on IV fluids, thus VSED could not be completed. It is imperative to have adequate support.

EOLCCA’s volunteers are trained to know how to walk people through the steps of preparing for VSED and accomplishing it successfully.  We are available to talk with anyone who is interested in exploring the option. Lastly, if you would like more information about VSED from a scholarly perspective, visit our website’s Resources page here.

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End of Life Choices Californiaoffers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California.  Please visitwww.endoflifechoicesca.org to answer a variety of questions.  To speak with one of our volunteers, please call 760-636-8009.  All our services are free of charge.

If you would like to support the mission of End of Life Choices California,
please click below and learn more about our funding needs.
Thank you!

How Not To Die In The ER

This extraordinary piece we share with you today is a thoughtful and moving example of just what it takes to get well-meaning medical providers to pay attention to what we (the patients) want, not what they think we need.  The story is a hard but valuable lesson about the importance of both knowing and communicating your end of life wishes.  It is told with grace, strength, clarity and love.

 Originally published March 12, 2019 and reprinted with permission

by Fran Moreland Johns

“I promise,” I said, “that I will not let them admit you; we’ll come back home today.”

My husband, who had lived with congestive heart failure for decades, was so filled with fluids that he was like a walking (sitting; he was wheelchair-bound) waterbed. This was a Monday. I am not medically competent, but I’ve been a hospice, AIDS/HIV and Compassion & Choices volunteer, and I knew enough to know he was sliding toward end-stage CHF.

In the ER I mentioned to assorted intake people that we would not agree to hospitalization. The physician who eventually arrived looked my husband in the eye and outlined the ways she could help him feel better and perhaps live longer (he was 89.) “But it will involve being in the hospital for a few days,” she said; “and I think that is not what you want.”

“That is not what I want,” said my husband, looking her in the eye.

“Fine,” said this saintly, beautiful doctor (name on request; I’ve already sent her a thank-you letter copying everyone I can think of.) “We will do what we can, and send you home today.”Martini

So we went home. It was a long day, and my husband was too weary even to finish his martini (an indication to me that he really didn’t feel well. The nightly martini was important.) He said he didn’t want even a bowl of soup. Bed sounded good, he said, but he was beyond cooperation. I then had to summon the Wellness people in our retirement condo building to help.

“Old person. Unresponsive. Call 911” said the Wellness people, as they helped me get him into bed.

“Do not call 911,” I said.

“We understand,” they said. “We love him too. But we have to call 911.”

The paramedics arrived. Paramedics are invariably the most gorgeous hunks. Two of the six who arrived had been to our apartment months before when my husband landed on the floor – he was 6’4” (at his peak) so it took paramedics to get him from floor to bed. “I remember talking to him about all this art,” one said. “And he was a Marine,” said the other. What’s not to love about paramedics? But. “We must take him to the ER,” they said.

“You may not take him out of this apartment,” said I.

It became an interesting battle.

“We understand,” they said. “We agree with you, ma’am. But we have protocols.”

Finally I said to the guy in charge: “You call your head person at San Francisco General and tell him you have this little old lady standing here with her husband’s DNR, POLST form and DPOA and she says we may not remove him from their apartment.” Actually, I was prepared to go over that person’s head. I have friends at SF General. But to his eternal credit, the in-charge physician  (may he survive and prosper) said, “Fine. Get him in bed and leave him there.”

Fran & Bud 5.28.18

 

 

The two of us

One of the paramedics saluted my husband as he left the bedroom.

My husband died three days later, in his own home where he wanted to be, with me scrinched into the hospital bed hugging him into the hereafter.

Had I not argued against the retirement home 911 protocols, and fought against the EMR protocols, he would have died in a cold, bright-lit hospital room with strangers poking and probing him and we the taxpayers spending thousands and thousands of dollars to make his last several days miserable.

What’s wrong with this picture? Only the caption.

The caption 99% of us would want is the one below the snapshot of my husband’s death, at home, with someone we love best hugging us into the hereafter.

Fully 60 percent of the U.S. population get the hospital caption — the one that goes with that blurry photo above — instead . (Another 20 percent get the nursing home caption.) One should not have to have a ferocious on-site advocate to let one die at home in one’s own bed. In addition to the DNR, the POLST and the DPOA there should be a JLMA form: Just Leave Me Alone, for those of us who concede that we’re actually going to die some day and work to keep our end-times as inexpensive and comfortable as possible.Heart

Until such time, I am grateful for the forms we do have, and for the two compassionate physicians who helped my good husband die the death he preferred. May he rest in well-earned peace.

 

 

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Fran Moreland Johns, an accomplished and prolific writer, is the author of Dying Unafraid (Synergistic Press), a nonfiction book telling of people who did just that.  Inspired by her personal experiences, Dying Unafraid led to other published work on end-of-life issues and activism in that field that included serving on the board of Compassion & Choices of Northern California and the San Francisco Bay Area Network for End of Life Care.  She has recently signed on as a volunteer with End of Life Choices California, and is currently helping to publicize our services throughout Northern California. 

If you would like to support the mission of End of Life Choices California,
please click below and learn more about our funding needs.
Thank you!

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.