What's All This Buzz About Death Preparedness...Part 1

If you are reading this, the word “death” must not have freaked you out! I applaud you for continuing to read! This is such an important topic and anyone who is age 18 and over needs to know this information. Most of us do not like to talk about death, and yet it is an inevitable part of life. I have not yet met anyone who is not destined to die at some point. None of us know the time or the circumstances of our future death. Some of us are closer to our death than others just based on our age. Surprisingly only 10-20% of us will die unexpectedly from a sudden event without warning. The rest of us will die from age related chronic conditions or chronic diseases that have a slower progression. Since we can’t predict our death, it is all the more important that we prepare for our future death in a way that will help our loved ones know what sort of care we would want in different situations.

A recently released book called “The Beginner’s Guide to The End: Practical Advice for Living Life and Facing Death” by BJ Miller, MD and Shoshana Berger has so much helpful and practical information. And it is presented in a way that is easy to understand. A lot of the information I am sharing here is from that book.

My focus in this blog is mostly about the paperwork that is an important part of preparedness. If any of us die without these documents it can be extremely difficult for our loved ones to sort out. If you are incapacitated before you die and do not have an advance directive or have not had a conversation with your family, how will they know what your wishes for treatment are? These decisions are different depending on the person and their age and health. A healthy 18 year old who had a serious car accident would probably want aggressive medical care, while someone who was elderly and with chronic diseases might not want that same care. My recurring message here is Talk About It! Document it!

“Next to birth, death is one of our most profound experiences- shouldn’t we talk about it, prepare for it, use what it can teach us about how to live?” A Beginner’s Guide to the End

Here are some basic documents that we should all consider and that should be updated regularly:

Advance Directive for Health Care (also called a living will)
Durable Power of Attorney for Finances
Will
Revocable Living Trust

Explanation:

Today in Part 1 I will be discussing Advance Directives. The other three will be discussed in Part 2.

An Advance Directive for Health Care is a legal document that explains your wishes for care if you are unable to make those decisions because of illness. Maybe you had an injury and are in a coma or on a ventilator because of a serious illness. Your health care agent, who you designated before you became ill, will be the one to make decisions for you. If you are at the end of your life it is also important for your health care agent to know how aggressive you want the medical team to be with your treatment. Do you want “everything done” or are you ready for comfort care which would not involve being on a ventilator or receiving CPR (cardiopulmonary resuscitation) if your heart stopped. It is really important to choose an agent who understands you and your values and wishes and someone you trust to advocate for you. As you can see, this isn’t just for people who are older or at the end of their lives. Young people can easily be in this situation after an accident or critical illness and need a health care agent too. This document can also include whether or not you want to be an organ donor.
A POLST form (Physicians Order for Life Sustaining Treatment) is an addition to the Advance Directive and is used for those who are living with a serious medical condition or advanced age and it needs to be signed by a physician to be valid. Some states allow other medical providers to sign also.

A newer additional form that is extremely helpful for any of us who may be at risk of developing dementia in the future, or have a loved one who may be at risk, is the Dementia Directive. This is a specific form developed by Dr. Barak Gaster, MD from the University of Washington, that gives directions for care that can vary based on the severity of the dementia symptoms. It is meant to be filled out by you while you are still cognitively clear in case you develop dementia in the future and at that time would not be able to express your wishes. The web site for this form is listed in the resources below.

One more helpful form relating to dementia is called My Instructions for Oral Feeding and Drinking. It was developed by End of Life Washington and can be found on their website. https://endoflifewa.org This form was developed because as dementia becomes more severe, feeding can become a difficult issue for the patient. This has been controversial because with severe dementia, patients many times do not want food or liquid and can’t process food, but caregivers may feel the need to push food and liquid even when it is being spit out and choked on. This form can make your wishes clear before this happens. We had a younger sister who had an advanced form of multiple sclerosis and was being spoon fed at the end of her life because she would reflexly open her mouth when a spoon was brought near. Did she want food at that point? It’s hard to say. She never shared her wishes, as far as I know, before her brain stopped working. Everyone has their own idea of what “quality life” looks like. If you have cared for someone with late stage dementia, then you probably understand what I am talking about. If not, you might think it is cruel to withhold food or that the person is “starving”. But part of the natural dying process is that the body starts to shut down and no longer needs or can process food and liquids. If someone is still asking to be fed, then they should be given food and drink in a form that they can manage safely. I’m talking about the situation where the person does not want food and cannot safely swallow or process what is being offered.

The Beginner’s Guide to the End has some great resources for advance directives. If you want more, I highly recommend buying the book! (I have no financial interest)

Resources

www.Gyst.com online service to get affairs in order

www.everplans.com secure digital archive to store important documents

www.prepareforyourcare.org free advance directives to print out for all states

www.aarp.org/home-family/caregiving/free-printable-advance-directives/

www.mydirectives.com create advance care plans online, add video if desired

www.conversationsofalifetime.org tips for starting a conversation about end-of-life wishes

https://fivewishes.org guide for advance care planning

www.theconversationproject.org conversation guide to get the talk started

https://commonpractice.com/products/hello-game

www.dementia-directive.org advance directive for dementia-Mentioned in blog above

www.joincake.com questions about your values