Advance Directive: Part 2

For our fourth week in April honoring National Healthcare Decisions Day (April 16), we will complete this series by discussing two additional topics that can be added to an Advance Directive as addendums.  Both are important and worth discussing.  So, let’s get started.

POLST

POLST stands for Physician Orders for Life-Sustaining Treatment. In some states it is called a MOLST (Medical Orders….).  In California it is a POLST.  This is a document that is signed by you and your physician.  Most physicians will not be interested in signing this form with you until you are seriously ill enough that you might not be able to make medical decisions for yourself.  Once completed, this form should be kept near the patient and be readily accessible to emergency medical personnel, assisted living facility staff and other caregivers. The form should follow a patient from home to emergency services, and to a hospital or other facility. 

Dr. and patient signing paperwork

 

This document/form is unusual in that it is almost always bright pink (but it does not have to be).  Here is a link to California’s POLST form.  The purpose of this bright color is so that the form can be easily found in the home (generally on the refrigerator or on the back of the front door) by emergency personnel or others who need to know right away how to care for you in the event of an emergency. 

Dementia Directive

Dementia Directive is a communication tool. It provides a way to share your views with loved ones, to let them know what you would want in case they have to make medical decisions on your behalf.  Families often face making difficult decisions about their loved ones’ care. This directive can help them feel more sure that the decisions they are making are closer to what you, their loved one, would have wanted.

This directive is not yet considered a legal document.  It is purely an opportunity for you to outline what your preferences are should you become unable to make decisions for yourself due to dementia or other brain-related disease.

 

 

latino couple reviewing AD document

Many of us have clear ideas about the kind of medical care we would want if we developed advanced dementia. This directive can lessen the chances that you might get more medical care – or less medical care – than you would have wanted if you develop dementia.

 

We have more information on this topic here on our website.  There also are links to other organizations who have developed excellent Dementia Directive forms and are well worth perusing.

End of Life Choices California has trained, able and willing volunteers who are happy to walk through these forms with you, how they work, and how they might fit in your situation.  A simple phone call (760-636-8009) can put you in touch with one of these wonderful people.  

THANK YOU if you have taken the time to read our weekly blog posts about Advance Care Planning this month.  We did it because we think this is such an important part of planning ahead, and ultimately to have the end of our lives be exactly how we would want them to be.  For most people, the primary wish is for a peaceful, dignified ending.  These Advance Directive forms and addendums are a strong beginning to that process. 

Also, please know that we are completely volunteer-run and do not receive any funds from state or government agencies.  We rely on the kindness, compassion and generosity of our reading public and those families we can help when their terminally-ill loved one is trying to achieve a peaceful death.  Please open your hearts and send us a donation, no matter how small or large.  It all helps tremendously.  

Advance Directive: Part 1

Now that you have hopefully talked with your loved ones about getting an Advance Directive (AD) done, or are thinking about updating it, here is a little more information.  By the way, it is recommended that people review their Advance Directive every five years or so, or every time there is a change in health status, or if the assigned Medical Power of Attorney is no longer available.  

THE LIVING WILL

This part of the Advance Directive allows you to specify which kinds of treatment and care you desire if you are unable to speak for yourself.

A living will allows you to express your wishes about any aspect of your health care, including decisions regarding life-sustaining treatments.  Remember, it can include treatments and procedures you do or do not want.  Statements regarding organ and tissue donation may also be included. The instructions provided in this portion of the form serve as evidence of the patient’s wishes.

 

End of Life Choices California - Advance Directives

 

Our friends at Compassion & Choices have graciously provided us with links to two worksheets that might help clarify some of these items:

 

A Values Worksheet

My Particular Wishes

THE MEDICAL DURABLE POWER OF ATTORNEY

This document provides the designation of someone who will be able to make decisions regarding your health care if you are unable to speak for yourself due to illness or injury. This designated person may also be called a health care agent, proxy, surrogate or representative. This person should be informed and agree that you are naming him or her in the AD. It must be a person you know will truly go to bat for you and express exactly what your wishes are when you are not able.

two women discussing advance planning.

It is important to think about who this person will be; as an example, an adult child might not be the best person to appoint if they are going to be too emotionally involved to honor your wishes. They might instead ask for all life-saving procedures when that might not have been your wish.

Make sure the person you choose can stand up under the pressure of timely decision-making and still honor YOUR wishes.

If the time comes for a decision to be made, the agent can participate in relevant discussions, weighing the pros and cons of treatment decisions based on your previously expressed wishes.  The agent can participate even if decision-making capacity is only temporarily affected. The degree of authority (how much or how little) you want this agent to have can be defined in the document. Alternate agents can also be appointed in case the primary agent is unwilling or unable to act. Additionally, you may name individuals who specifically are NOT to participate in decision-making.

If an agent is not appointed, the law in most states provides for other decision-makers by default, usually beginning with the spouse and adult children and ending with the patient’s physician.  Physicians tend to err on the side of prolonging life so their decisions may not be consistent with the patient’s desires. In some cases, if the patient does not have an AD, a court may be required to appoint a guardian.

Lastly, here is the link for California’s Advance Directive form which can be completed online.

Next week, in Part 2, we will cover the POLST (Physician Orders for Life Sustaining Treatment) and The Dementia Directive.  

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!