So, when the discussions about the Medicare “death panels” was going on, and people were saying that all this talk about “end of life conversations” would lead to more old people dying it made me wonder what people think will happen if you don’t talk about your end of life wishes. Because even if you don’t talk about what you want to happen at the end of your life, the end of your life will still come.  And having the talk (or talks, this isn’t necessarily a one time thing if your beliefs or situation changes) with your family and doctor will not hasten your death, despite what some people fear.

Talking about your end of life wishes is the way to make sure that when that time comes your family knows what you want, and they are able to communicate to your doctors so that your wishes are carried out. It gives your family comfort knowing that any difficult decision is yours, not theirs. And it can go a long way towards making sure your wishes are respected and honored, even if they are not the same decisions your loved ones would make for themselves.

If you don’t have a doctor you are comfortable with, or maybe you don’t have a regular doctor, you can have the conversation with your family or your friends. You can write your wishes down and keep them somewhere where they would be found in an emergency.

Then, you need to give someone the legal authority to make health care decisions for you if you become unable to make those decisions (or communicate them.) In Massachusetts the way you do this is by signing a Health Care Proxy. You can  have this document drawn up by an attorney,  you can also download a free health care proxy (also called an Advance Directive) from the South Shore Hospital website, or ask your doctor for one.

In addition to giving someone the legal authority to act on your behalf, you want to provide them with guidance on the decisions you want made.  You can do this with a 5 Wishes Living Will from Aging With Dignity, or the What If…Workbook, (which I sometimes think should be called the “When Workbook” since at some point in time, everyone will need it.)

For my clients, I always include a health care proxy with their estate plan, and we talk about their end of life wishes and document those wishes for their family and doctors. I can tell you that so far not one of my clients has died from having that conversation.  But I can also tell you that 100% of them will die someday.

April is Health Care Decisions month, the month when you are supposed to sign health care proxies and talk to your family about your “end of life wishes.” I know many people will sign health care proxies, but I wonder how many will take that next step to communicate their wishes to their families, or to even consider what their wishes are.

A health care proxy is invoked when your doctors have determined that you are unable to make or communicate health care decisions for yourself, and someone needs to speak on your behalf.  Maybe you’ve been in a car accident and are unconscious, or have had a stroke and cannot move or speak, or have advanced dementia and cannot understand the situation enough to know what decision to make.

Stop for a moment and imagine this situation.

Then imagine that something needs to be done -  a blood transfusion after an accident, a feeding tube inserted after a stroke, CPR because of a heart attack suffered when you have advanced dementia.

Do you know what you would want done? Does your family? Do your doctors?

The decisions aren’t the same for everyone and there is no “right answer.” It depends on your age, health conditions, religious beliefs, family experiences, and more.  What you would have wanted at one time, may change as your health changes.

When your doctor turns to your health care proxy and says “what should we do?” you want them to be able to know, with confidence, what you would want.  Because they are not making their own decision, they are communicating your decision. And they can’t do this if you haven’t told them what you wanted. It’s a hard enough position to be in already, don’t make it harder by putting the burden on them to decide.

Help your health care proxy by thinking about your wishes, by writing those wishes down (this often helps us learn what we are thinking) and then sharing those wishes with your family or whomever you are appointing to serve in this role.

Share them early and often. I do. I gave everyone in my family a copy of the Five Wishes Living Will for Christmas one year. (The perfect stocking stuffer!) I update mine every so often, sometimes prompted by media stories, and revisit it often to see if there is anything I want to add or change. And I make sure the people I’ve appointed to act on my behalf know what I want and where to find the document so that in a moment of crisis, they can be reassured that they are making my decision, not theirs.

It’s not morbid, it’s kind.

I was reminded of this story today while I was reordering Five Wishes Living Wills for my clients, and saw that the company now offers a version of this document for children, called My Wishes. 

Much like the adult version, this booklet walks the child through their wishes for how they want to be treated, how comfortable they want to be, what they want their friends and family to know, what they want their doctors and nurses to know, what their likes and dislikes are and what things will make them feel better.  What a great way for a child in the hospital or facing an illness or chronic condition to feel like they have some control over what is happening to them. 

I offer the Five Wishes Living Will to my adult clients, and will now be offering the My Wishes children's version for those clients who want them for their children. 

You can download a sample of the My Wishes booklet here: Download Five_Wishes_MyWishes_Final, and place an order here. 

But, as I tell them, by not deciding you are still deciding. 

By not choosing a guardian of your children you are deciding that a judge is really the best person to decide what will happen to your children, and any money that they inherit, if you pass away.  (If you can't think of anyone to name as guardian, go read this great post by Oregon Attorney Candice Aiston.)  Which family members would step up to take that role? Is it someone you want? Then name them. Is it someone you don't want? Then name someone else. 

By not choosing someone to handle your finances in the event of your incapacity, you are deciding that a judge knows the best person for the job.  You are also deciding that your money is better spent on court proceedings than on your care, and you are deciding that in the event of a crisis your family will be at the attorneys office and in court, and not at your bedside.

By not choosing who you want to have your property, you are choosing to have it distributed according to state law which means that it could end up in the hands of an 18 year old kid, someone with a creditor problem or in the middle of a divorce, or it could seriously jeopardize the benefits being received by someone who has special needs or is in a nursing home. 

The last thing I want to do is have to have a conversation with a family in which I need to explain that yes, I had met with their mother a few times, but no, she had never been able to make a decision and I'm sorry but we need to go to court to get a guardian and a conservator appointed so that someone can pay the bills and sell the house and consent to the medical procedures.

If you've been putting it off because you think you can't make the perfect decision, just make a good decision and get your plan in place.  It can always be changed while you are alive and competent, but it can't be created out of thin air when you are no longer around. 

________
Estate
Planning, Probate and Trusts involve complex areas of law. Individual
circumstances must be considered before any advice can be given.  The
general information above is not to be construed as legal advice, which
can only be given after consideration of the unique facts of each
matter. Please seek the advice or counsel of your attorney, financial
advisor or CPA as it may be appropriate.

That is the situation that Engage With Grace seeks to avoid – having to make end of life decisions for someone when you don't know what their wishes are.  With their One Slide project, Engage With Grace just asks you to talk about 5 questions:

1. How much intervention do you want in the event of a terminal illness?
2. If there were a choice, would you prefer to die at home or in the hospital?
3. Could a loved one correctly describe the type of treatment you'd want in the event of a terminal illness?
4. Is there someone you've appointed to act on your behalf if you are unable to make medical decisions for you?
5. Have you signed a health care proxy? 

If you are getting together with family over the holidays, consider bringing the subject up. It can be casually over washing dishes or you can do what I did and give every one a copy of the Five Wishes Living Will in their stockings. However you decide to bring it up, you'll be glad you did.           

She is like a horse grazing
a hill pasture that someone makes
smaller by coming every night
to pull the fences in and in.

She has stopped running wide loops,
stopped even the tight circles.
She drops her head to feed; grass
is dust, and the creekbed’s dry.

Master, come with your light
halter. Come and bring her in.

(Kenyon, Jane. New and Selected Poems. St. Paul, Minnesota: Graywolf. 1996.)

Whether you want a completely customized event, or a traditional
funeral, we make it easy to record your thoughts. Our resource section
has many ideas to get you thinking about what you would ideally want.  
You can enter as much or as little as you’d like and skip sections that
aren't relevant to you. It's also easy to change things throughout your
lifetime, as you change.  Here are some of the other things you can do
at MyWonderfulLife.com:

• Leave letters to loved ones
• Document the music and writings you love 
• Leave your favorite memories, and anything else you’d like to share 
• Let your Angels know where all your “stuff” is, like bank accounts, wills, and other important information 
• Leave meaningful possessions to loved ones and tell them why 
• Make sure your kids and pets are taken care of 
• Write your own obituary 
• Design your own headstone 
• Upload some of your favorite photos that can be used at your service

You appoint "Angels" who will be notified that you have set up your account, and then after you pass away, they will log onto the site to download your last wishes. 

If having an on-line way to make these arrangements will encourage more people to do it, I think that is a good thing. 

If you prefer an "offline" method for recording these wishes, you can use a book like The What if…Workbook. Either way, it's important to have these things recorded, and to have someone who knows where to find all of your important documents. 

Your burial wishes should be written in a separate document and kept in a safe place. You may want to give copies to your family members or clergy, as well.  You can meet with a Funeral Director to do "pre-need" planning and prepay your funeral. Some of my clients have even written out the schedule for their memorial services, down to the music they want played and the type of flowers.  While these may seem like morbid topics, it makes things easier on those left behind if they don't have to be making too many decisions during their time of grief. 

The What If… Workbook by Gwen Morgan has an entire section devoted to end of life wishes and is a great way to have all of your important information in one place. 

When you are thinking about putting your "affairs in order", think about doing more than just signing a Will, a Trust, a Power of Attorney, a Health Care Proxy – those documents carefully drafted by your attorney.  Think about writing some of your own documents and keeping those in a safe place to be opened only upon your death (and changed by you whenever you need.)

If your children are young, you could write about what your values are that you hope to pass on to them, what your dreams are for them. If they are older, you could write about why you have structured trust distributions to be made in a certain way (such as for college or a down payment on house, but not a trip to France).  And if you have made vastly uneven bequests, or left someone out entirely, I encourage you to write about why you have done that, as well.  Often times the parent will say "She'll know why I'm doing this, she'll understand."  But I can pretty much guarantee you that a child (no matter what age) who has just lost a parent and then found out that he or she has been partially or totally disinherited will not understand. 

And since you are not around anymore to explain, their grief and anger and shock may cause them to lash out at their siblings, their other parent, even their parent's advisers looking for answers.  And you are the only one who could have provided this insight.

In writing the letter, you may find that you go through many drafts. You may find that your reasons become clearer and stronger.  Or you may  find that as you write they seem different, smaller, less important than they did before. Maybe the writing of the letter even causes you to change your mind. Or maybe it doesn't, which is fine, too.  But at least it will provide your loved ones with some insight and guidance, which only you can provide.

The author recounts her experience with her family trying to deal with her grandfather’s illness and their attempts to interpret his wishes about the end of his life.  She writes:

…the experience made me realize that having a living will isn’t
enough — we need to be sure that we have been clear and specific, and
that we have considered a variety of scenarios as we try to instruct
our loved ones to make decisions for us in a medical crisis. Phrases
like “terminal illness” are vague at a time when new treatments and
drugs can keep patients with a terminal disease alive for months or
years.

Many people prepare a "Living Will" or "Life Support Statement" as part of their estate plan.  As the author indicates, these documents are sometimes filled with vague statements about death being a natural part of life, and "heroic measures", which can make it difficult for your family to interpret in their time of grief.

I explain to my clients that even if they sign a Living Will, it is very important that they also have conversations with their loved ones about the different types of situations that can arise and what they might want done in those cases.  These conversations do not need to be a big, formal, one-time thing. They can occur if something is in the news about end of life care, or if a friend or relative is going through something similar.  It can be easier for your family to remember this way – "Oh, I remember when Aunt Peg was in the final stages of breast cancer, mom said she wouldn’t want another surgery if that happened to her." 

The Mayo Clinic also has a great guide for discussing your last wishes.  It outlines the different treatments that you’ll want to address: resuscitation, mechanical ventilation, nutrition and hydration assistance, dialysis and treatments at the end of life.  It also reminds you to revisit your wishes from time to time to see if they change – for instance during pregnancy or if you are diagnosed with a terminal illness.