What’s the big deal about having an advance directive? Why should you and every adult you know have one? WHY do I keep talking about it?
I’m just back from 10 days in the woods. For the most part I was without any electronics so you might think I would have been far away from the subject of end-of-life choices. However that doesn’t seem to happen anymore. Rather, hardly a day goes by without someone telling me about a recent death and what it was like. The reality … people die. The big deal is this: IF you have chosen an advocate/agent/proxy and have written out your wishes and shared them well, you have a better chance of your final days on this earth- whenever they come- being as you would prefer.
Over dinner, a lovely young woman said to me, “These discussions are a gift to everyone involved!” Due to some sort of inner sense she and her mother had revisited the topic of end-of-life wishes just a couple of weeks before her mother received a diagnosis of terminal cancer. Because she had a completed advance directive and they had already had several full conversations there wasn’t a whole lot of rehashing they needed to do.
In the same week someone else told me about her canine companion of many years and how sad but also peaceful the end was. There was a point when she knew that what I call the “pain/gain” ratio was off. Luckily dogs don’t have to have completed advance directives. Fritz was having too much trouble functioning and it was time to let him go peacefully. I can’t find it right now but I know I have read at least one article saying, “I wish I could have the same loving end that my dog had.”
There’s a compelling June 24 article about Advance Directives by Paula Span. Her column “The New Old Age” in the NYTimes is a super resource!
Having a strong advocate and clearly stated wishes IS a big deal. No matter whether you are 19, 35, 56, 73, 99 or any age in between. If you want your loved ones to NOT have to face terribly difficult decisions, desperately wishing they knew what your wishes would have been, take the time to make your wishes known now. You can easily can download the form for your state. Click here on the word form.
If YOU do have your own completed advance directive, know what it says, have shared it with potential decision makers, and know where it’s kept – please encourage someone you care about to do the same. If you have any questions please feel free to call me 802-380-0301 or email firstname.lastname@example.org
Instead of trying to write a post for Tuesday July 8th before I head out of town today( 7/3) I decided to slow down and simply wish you well. At the bottom of it all- THAT is what I care about. That really is why I do this work.
Life is hard enough without our making it harder. I hope that when you read this you will pause, take a deep breath, and then another, and give yourself a gentle hug- whether physically or just emotionally.
I will be in the woods near Huntington, Vermont for the next ten days with my daughter and granddaughter. I will practice the same “prescription.”
May your days go well, Joanna
You may dread talking about death at any time and with anyone. For many death is the last forbidden topic and the end of one’s life not anything people want to discuss. The person who dares to venture in that direction may be seen as depressing, negative or morbid. And yet death so far anyway IS inevitable. As some people quip, “LIFE is a terminal illness.”
Surprisingly, some of the most gentle and loving moments can be experienced when a family sits together and talks about the passing of people they loved, what it was like and what they would wish for themselves. Like a wedding that can cause tears while also touching your heart, these conversations will touch your heart.
Talking about It
Last Sunday, my husband, sister-in-law, and I sat quietly with my mother-in-law who has mid-stage Alzheimer’s to try to get a true sense of her wishes for the end of her life. She’s always said, “no extraordinary measures.” The problem is that it’s not so clear anymore what is and is not an extraordinary measure.
Before the miracles of modern medicine death was a natural consequence of old age. However, we can now extend a life which is severely diminished for a long time. Emergency Room staff see family after family bewildered and torn apart by the choices they are asked to make regarding what intervention their loved one would have wanted. Only the person her/himself can truly say,” this is what I believe, this is what I would want.” But if you don’t make a time and safe space for talking about it while you can, people won’t.
It wasn’t easy, our conversation, and we stumbled a bit. When we got through to the other side of the conversation we agreed that the conversation felt like a very loving gift to each other. It was a time of caring – being care full. We clarified when we weren’t sure we understood fully. We wished that all families would have a similar opportunity.
We now know what my mother-in-law considers an acceptable quality of life: that if my she can walk with a walker, or if she’s able to talk while riding in a wheelchair and still has a sense of humor she considers life worth living.
We also know that if she doesn’t recognize us and can’t feed herself, and this is a pattern not a single incident, she does not want medical intervention except for comfort care. At some point, if she can’t speak for herself, we will be able to follow the criteria which she set out – when it was still possible.
There won’t be argument between us and we will follow her wishes.
Your Next Step?
If you haven’t begun this conversation with the people you love and are having a hard time getting anywhere near the topic, you are not alone.
Others have been able to make the leap with some help.
One gentle step you can take is to go look at Conversation Starters. Check out the GoWish game or the Conversation Project and discover for yourself that you do have some clear wishes. Or call me.
At a time when you are not under immense pressure and stress, begin to consider the choices that you and loved ones may someday face. Hopefully it will be far in the future but it can only help to be prepared.
For sure you want to be as kind and loving as possible when someone you care about is very ill- perhaps dying. But what is the best way to do that?
My friend Gina sent me a super article from the publication called DAILY GOOD, NEWS THAT INSPIRES … it’s a syndicated column by the author Charles Garfield.
In the world of death and dying it’s vital to keep in mind that we can only TRY to make things as good as possible. As I have written elsewhere , how we die certainly falls within the realm of the Serenity Prayer – Courage to change the things I can … the Serenity to accept the rest and the Wisdom to know the difference. All crucial.
I will list Garfield’s 7 basic keys here ..but strongly suggest reading the whole article yourself. If you click on the link you will go right to the original article.
Sevens Keys To a Good Death by Charles Garfield
Help the dying person:
“1. Experience as little pain as possible.
2. Recognize and resolve interpersonal conflicts.
3. Satisfy any remaining wishes that are consistent with their present condition.
4. Review their life to find meaning.
5. Hand over control to a trusted person, someone committed to helping them have the kind of death they desire.
6. Be protected from needless procedures that only dehumanize and demean without much or any benefit.
7. Decide how social and alert they want to be.”
Hope you will go read the whole article. It’s based on a lot of experience and makes good sense.
Here’s another question that I received. (Please note- questions are always welcome. Your questions help us all!)
hi joanna, please describe to me a situation where one would have a proxy and hospice. if i have to have a proxy how can i comprehend what a hospice worker is saying. i think of hospice as “attending to their emotional and spiritual needs” and not so much about taking care of the physical pain…. will you please paint a scenario for me?
I’ll give a go at a brief answer and will be glad to return to this again. In a culture where none of this is discussed very much, understanding the role of the Proxy, and Hospice and all the related functions takes a while. Here’s a start.
Proxy and agent mean the same thing. This role can also be called advocate. Hospice functions are very different. Each is an immense help.
Basically- the proxy is there to do their best to make sure the wishes you have outlined are followed by the medical folks. There are dozens of scenarios where the proxy can help. One reality is that even if you CAN speak you are likely to be under a lot of stress. The proxy can help you stay clear about the wishes you outlined when things weren’t so tense.
For instance, my Dad was coherent until nearly the very end but there’s no way that he had the energy or comprehension of the big picture to be able to direct the medical people to NOT do yet another blood test; nor to ask them to speed up getting him home which is where he wanted to be. In fact – if I had been there and knew what I know now—I would have asked the doctor does it really make sense to put him in the hospital for a pneumonia which was causing him NO difficult symptoms and no pain? Or is it time to let nature take its course given the degree of disability he is already dealing with.
If I had been along when Dad was told he needed to be hospitalized I could have said, “Dad – You know how you have been saying, “I’m ready when it comes.” This is one of the typical ways “it comes” . Called “the old man’s friend” and also known as a potential “exit event” , pneumonia is one way for the time to come. The question is, ” Do you want your life prolonged by attempts to cure the pneumonia or do you want to simply be kept comfortable and allow natural death?” As I have written elsewhere – I will never know for sure what he would have chosen.
The proxy is on hand to negotiate on your behalf. This is the person who asks WHY does she need that procedure? Is it designed to make her life more comfortable? Given her general health- what is the value of what you are proposing? What happens if you don’t do it? And most importantly – how does this fit with the wishes that she outlined? If the wishes are ” have every possible medical procedure to keep me alive” the agent can hold steady in that direction.
Hospice has a very different role — as you say, Hospice provides the comfort and emotional and spiritual support to the patient and the family regardless of whether the patient can speak or not. There are many medical hospices– our in Brattleboro is not. I will write more about Hospice next time. What is so lucky is that there ARE wonderful resources – you just have to know about them!
Please keep asking!
Choosing the middle option in overall health care goals. What does it mean?
This question came from a client.
“My mother is emphatic that she doesn’t want to have her life sustained at all costs. However, we want to counsel her on what her other choices are. In the form being used Vermont Advance Directive for Health Care the middle choice would seem to depend on short-term versus long-term. If she’s “out of it” temporarily, but is likely to bounce back, then she would want treatment to sustain life. Can you help us understand what that choice really is?”
How would you counsel us on this?
This is a dilemma. As people grow weaker and have more medical issues the trajectory for recovery changes. The middle option to sustain life only in certain conditions can mean different things at different times.
A superb reference is “My Mother,Your Mother: Embracing Slow Medicine, the Compassionate Approach to Caring for Your Aging Loved Ones ” by Dennis McCullough. He talks about major medical interventions and the reality of what happens. It’s been very helpful to my family in recent years.
People often handle this section by choosing the middle choice and then making a note in the additional goals, wishes or beliefs space just below those boxes – something like “If there’s a GOOD chance I will bounce back to a former healthy state of functioning please attempt treatment. But if after ___________ (unit of time) there is little sign of recovery I want my treatment to be revised to comfort care only.”
This is a good option because it is hard to know every answer ahead of time. There are so many possible scenarios.
If this is the option that is taken, then you must be prepared to grill the doctors if they say a major procedure is needed. Ask questions such as, “What is realistic given her status just before this happened?” “How much time might this procedure buy her in terms of healthy pleasurable living?” “What does a realistic recovery path look like?” “Honestly- is this something that you would do for yourself or your mother? ” You could also demand a Palliative consultation BEFORE they go ahead. It can take a strong back bone to hold back the tidal wave of immediate action.
Unfortunately our current system often recommends MAJOR interventions with an urgency that they must be done quickly —you have to stand your ground in demanding as much time as possible for wise decision making.
I recently posted that you can have an Advance Care Directive app on your cell phone to direct someone to your wishes if there’s an emergency. I need to clarify that this is not automatically on your phone. You can easily download it from this page of the American Bar website. They have one app that is free and one that is more complex which costs all of $3.99.
There are several examples on their website of how an Advance Care Directive app can help that is on a smart telephone. For instance, it can help others locate your decision maker (agent, proxy).
If this is a good way for you to get this done- please do!
There are many ways to record your end-of-life wishes. Most important is that…
- you have chosen a proxy – the person who will speak for you if illness or accident makes it impossible for you to communicate
- your proxy understands and accepts the role and
- you have talked about your values and wishes for your care if you were to have a serious neurological crisis and there is less than 5% chance of your being able to regain your ability to know who or where you are.
Then- be sure to communicate these wishes to those you love so they don’t have to guess what you would want.
With that done — you can take a deep breath. Please use the resources on my site for more information and contact me with any questions.
If you want to know how our current crisis has come to pass – read this book!* …and a time to die, How American Hospitals Shape the End of Life by Sharon R. Kaufman. For me, it reads like the best thriller.
I kept reading for 5 hours the other night! Rarely happens.
This books is riveting and amazingly fair. Written by a medical anthropologist who spent two years studying how death happens in the US, it is a fascinating study of how we have arrived where we are now – and what it looks like in real life.
*Click on book image to go to Amazon to get more information.
Hi– I’m pretty sure I wrote about this long ago but yesterday evening with my pioneer Advance Care Planning support group we read the article again … about the whole paradigm change when doctors and families use A.N.D. ALLOW NATURAL DEATH … instead of DNR – Do not resuscitate – which sounds neglectful or worse.
A.N.D. how much gentler and acceptable it is .. and real for that matter. I should follow up and see how much progress the idea has made in Georgia ..
The article is A TALE OF TWO CONVERSATIONS is by Richard W. Cohen 2004 – an orthopedic surgeon with Wellstar Health Systems in Marietta Georgia. Also chair of Georgia Health Decisions.
I will see if I can get a link and add it here… in the meantime – SPRING has arrived in Vermont -Yahoooooooooo – time for me to head out to my best medicine — Gramma time.
p.s. So far I have only found a comment ABOUT the article by an RN who is also a daughter whose mother died. It’s not the link to the article but it’s relevant .
Yesterday after hearing Dr. Hammes talk more about the specifics of the LaCrosse Advance Care Planning success, a colleague said, ” Here’s an idea. What if we CLAIM death panel!” Hmm- intriguing.
As in – “YES we are having a Death Panel Thursday night. Everyone warmly invited!”
Dr. Hammes is very clear that PATIENT Centered Care and the peace and comfort for families in knowing that the care given was what their loved ones wished is the MAJOR focus of all his work. The resulting benefits, demonstrated in carefully tracked statistics, are remarkable!
So hey – sure Lisa, let’s have those DEATH PANELS –give folks all the data they need about the details of dying and all the support they need to talk about what they value most about being alive…