End of Life Options

(See 2022 update to California Death with Dignity Act, below.)

Most of my friends in the Emergency Preparedness realm seem to agree with our mantra, “The more we all know, the safer we all will be.” For me, the mantra extends to “The more options we know about, the less fear we’ll have.” (Options certainly drove the content of books in the Mini-Series like “No water?” and Personal Safety.)

Today I want to touch on some options that very seldom get discussed, namely, your end of life options. That is, what choices you have about medical care and particularly, what choices you have about when and how you will die.

We don’t usually spend much time talking about dying or the choices we have at end of life.

It seems that we actually avoid talking about dying although it’s something we all have in common! I’m not sure exactly why this is the case. Are we afraid of dying? Do we think that talking about it will make it happen? Do we somehow want to “protect our children?”

Well, Joe and I have experienced the death of a number of family members and, more recently, of several neighbors. And the hundreds of thousands of deaths resulting from the coronavirus have made death something we hear about every day.

It’s time to know more about end of life options and take some preparedness actions NOW before it’s too late.

Disclaimer: This Advisory isn’t meant to be a statement about religious or cultural beliefs. Nor is it meant to offer medical or legal advice. It is meant to clarify some concepts that may be fuzzy (as they were for me a while back) and give you an idea of where to go for more info.

Before you get ill, you need Advance Directives to tell your doctors how to handle certain situations.

Several documents can be consdidered Advance Directives – a Living Will, a DNR order, and/or a Medical Power of Attorney. Here are simple definitions:

• A Living Will tells your doctor what kind of medical care you want should you become incapacitated. Examples might be ventilator for life support, artificial nutrition, etc. If the Living Will doesn’t mention a specific issue, then the doctors will probably go ahead and treat you as they ordinarily would to save and sustain your life. You need to have the Living Will completed before anything happens.
• A DNR, or Do Not Resuscitate order, gives medical personnel specific instructions about what to do when your heart or breathing stops.
• The Medical Power of Attorney gives someone else (usually a family member) the right to make medical choices for you if you are incapacitated or unable to make decisions for yourself.

Different states have different rules regarding these documents, so your first action is to find out how things work in YOUR state. Action item: Simply type into your browser the words, “Advance Directives [your state].“

The challenge with all these documents is if you have wishes, they need to be clearly spelled out, appropriately witnessed, and readily available to medical personnel. In addition, your family needs to know exactly what your wishes are.

Example of worst case

You’ve been through a long illness and know you do not want to be resuscitated if your heart stops. But you haven’t really made it clear to family or, for that matter, to your doctor. An incident occurs. Out of fear or emotion, your family insists you be kept alive no matter what it takes or what it costs. A bad situation becomes terrible.

Please don’t wait. Get these forms and make these decisions and talk about them NOW.

What end of life options do you have regarding your body after death?

Burial or Cremation

I’m sure you are familiar with standard burial and cremation. Decisions here may be determined by religion, timing, location, and your survivors’ finances.  Be aware of these financial benefits:

• Social Security will pay a one-time lump sum of $255 to a surviving spouse.
• The Veterans Administration has benefits to help with burial, funeral and transportation costs for veterans who die in a VA hospital and/or who were receiving a VA pension.
• The stimulus bill passed in December, 2020 has a plan to reimburse families for funeral costs if they had a loved one die from COVID-19 between Jan. 20 and Dec. 31 of 2020. As of February, 2021, FEMA reports it is working on setting up a hotline.

Donation of your Body to Science

People who want to advance the understanding of science may wish to donate parts of their body or their entire body after their death. Many different programs are available so again, it pays to do your research. (Do more than just read their websites, which will always be positive. Check on reputation via news stories.)

Joe and I agreed we want to donate our bodies to science. Here’s what we discovered as we looked into options here in Southern California.

• Many programs exist. Some are national, some local. Some are free; some have a fee. We elected to go with our local university’s medical center.
• Being accepted requires that we have an application on file. The university will collect our bodies and transport them at no cost. The program will not return any remains.
• There are some circumstances that would deny us coverage. For example, while our program will come to get us no matter where we are, another program placed a 50 mile maximum distance. We must fall within normal weight limits and our bodies must be intact. And if we die from COVID, the university will be unable to use our bodies so we need to have alternate arrangements.

If this seems weird or uncomfortable to you as you read this, you can believe that some of our family members found it uncomfortable, too!  We have had multiple conversations about our choice!

What options are available regarding how and when to die?

Hospice Care

If you have a terminal illness (most likely with no more than 6 months to live), you may choose to stop trying to cure the illness and ask for hospice care so you can die as comfortably as possible at home or, if necessary, in a hospice inpatient facility.

Mayo Clinic defines hospice this way: “Hospice care is a service for a person who has discontinued disease-fighting treatments and is preparing to die.”  Medicare Part A and most health plans cover hospice.

(Palliative care is often linked with hospice care. Palliative care is aimed at providing comfort for a particular illness/symptom/pain and may be short or long-term. It is usually paid for by your insurance. Hospice care is always palliative care, but palliative care is not always hospice care.)

As you might expect, you have choices of different hospice providers, so do your research.  Your doctor or hospital may be able to refer you. Ask questions about what exactly the hospice workers will do and what they won’t do, how often they come, their response time, does the program offer respite care, etc.

Ending your life on your own schedule

The idea of choosing when to die is extremely controversial.  Still, people who suffer or anticipate constant pain, sickness, depression, anxiety or fear deserve to know about these end of life options, too.

Here are two programs as examples.

1. Final Exit Network (FEN)

The Final Exit Network (FEN) is a newer version of a program many of us have heard of: the Hemlock Society. FEN is a national, non-profit organization serving members in all 50 states.  

The network believes that “a mentally competent person with intolerable suffering or pain has the right to end their life, choosing the timing and persons present, and should be free of any restrictions by the law, clergy, medical profession, friends or relatives.” 

FEN does not encourage people to end their lives, and does not help people end their lives. Rather, its goal is to educate people about end of life options and to provide a compassionate presence at their bedside. FEN also defends people’s legal rights to end their lives.

2. Death With Dignity Act

Since I live in California, I’ve spent some time finding out about this particular end of life option. Ten states have the Act; the parameters in all seem quite similar.

The California Act allows terminally ill adult residents in California to get medical help to end their own lives. Under the law, this is NOT considered suicide. You can get the full history of the CA Death With Dignity act here.

Here’s how “aid in dying” works in California.

The “aid” is a prescription for a medication that will end your life. To request the prescription, you must be 18, a California resident, capable of making your own decisions, and diagnosed with a terminal illness that will result in death within six months.

UPDATED JANUARY 2022. Before 2022, you had to make at least two requests for the medication, 15 days apart.  You had to provide a written request, signed by two witnesses. Two doctors had to confirm your condition and confirm that you were capable of making your own medical decisions. As of today, the process has been simplified. Duplicate written attestations have been eliminated; most importantly, your two requests only have to be 48 hours apart.

NO OTHER PERSON can make this request on your behalf. Moreover, you have to be able to take/drink the prescription by yourself. It cannot be “administered.”

According to the California website, in 2019, the latest year for which statistics are available, 618 people received prescriptions under the act and 405 used them to die. 

A personal note.

I inquired of my own doctor about the Act. She told me that she would never agree to sign off on the prescription for me, based on her personal beliefs. I was surprised! However, she assured me that competent colleagues would be willing and able to do so.

So, don’t assume anything about your own doctor!

Writing this Advisory has brought back memories and reminded me, again, that every single person may have a different idea about how end of life should be approached. All competent and caring individuals, however, surely do not want to leave an emotional mess and even a tug-of-war behind because they didn’t make their wishes known.

As long as you are healthy, you can always make changes in any of these end of life decisions. But if you haven’t made decisions, the minute you get ill they may be taken right out of your hands.

I welcome any real-life experiences to add to this Advisory.

Virginia
Your Emergency Plan Guide team

P.S. Last week we talked about the simple things you can do to prepare for personal emergencies. If you didn’t see it, please go back and take another look at the Just In Case letter. It’s a good first step in this type of planning.

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