Presentation from 2021

Presentation from 2021-Laurie Miller

There’s only one thing that is certain in this world, yet it’s the one thing no one wants to think about, let alone talk about.  I’m talking about death and dying. 

Death is the only thing that is guaranteed to happen to everyone.  Death is the only absolute.  Of course, we do not know how it will happen or when it will happen, but we all acknowledge and understand that it will occur. 

So why don’t we think about it?  Why is it so challenging to talk about?  The answer is that death is a difficult and emotional concept.  Perhaps, somewhere deep in our brains, we feel that if we don’t think about it and just keep our heads buried in the sand, it just won’t happen.  Sadly, we all know that is not true.

So, to make it a bit easier to deal with, let’s reframe the topic. Rather than thinking about death and dying, let’s think about life and living. It is more palatable to talk about and think about how we want to live at the end of our life. It can be empowering to share our wishes for end of life care with our loved ones.

There are many topics to consider when thinking about end-of-life care.  You may hear these conversations called advanced care planning.

Advanced care planning includes preparing legal documents, like wills and power of attorney forms. It’s critical to have legal documents in place stating who you have chosen to speak for you when you cannot speak for yourself and who will be allowed to make financial decisions. But, in addition to the legal aspect, you actually need to tell your chosen person what it is that you want. They are in place to speak for you only when you are deemed incapacitated and unable to speak for yourself. They absolutely need to know what you want and how you want to live at the end of your life.

Having the conversation about your end-of-life wishes is a gift to your loved ones.  If you love them and trust them enough to legally make them your proxy, then you owe it to them to have these conversations. It will provide a roadmap for those who may be making tough and emotional decisions based on what you want and what you’ve shared with your loved ones. These discussions can make all the difference in the world for your loved ones.  It can be agonizing for your chosen proxy if you’ve never had these discussions. It won’t make death any less sad, but it will help guide your loved ones to make difficult decisions about you knowing what you want.

My story: My Mom and I were close. Other than when I went off to college, we always lived in the same city. When I started my home care agency in 2006, my Mom was our first administrator.  She was a retired social worker and a hospice volunteer. I remember when my grandfather had a stroke in the 70’s, my mom went to Florida to help my grandmother care for him before he died. She did not shy away from the subject of death. As a matter of fact, when we went to funerals together, she would elbow me and say do this, don’t do that at her funeral. She told me everything that she wanted at her funeral. We actually joked about it.

Well, she was first diagnosed with cancer in 2000. She treated it head on with her usual determination. She did great with surgery and treatment and continued living life to its fullest. She tackled its recurrence a few years later and even came out of retirement to become our administrator.

A series of unfortunate health events landed her in the ER several years after that. That first weekend she was in the ICU and unresponsive, my brothers and I had no idea what to do. We had to make a million decisions and we did not know what to do. All we knew is what my mom wanted for her funeral arrangements, but we had no idea how she wanted to live at the end of her life.

The day before we had to make the most agonizing decision of our life, my mom made it for us. She came out of the coma on her own. That lead to months of ups and downs in the hospital, ICU, rehabs and back to the hospital.  She never went back home and she died 9 months later.

For years, I was racked with guilt wondering if we made the right decisions along the way. Before her hospitalization, we had so many opportunities to talk about it. I went with her to all of her oncology checkup appointments and to chemo treatments. It just never seemed like the right time. If she had a good report, we didn’t want to dampen the good mood. If it was bad news, it seemed like an inappropriate time.

I learned many lessons. One is that talking about funeral arrangements is not the only conversation you should have. It is very important,  but you also need to talk about what matters to you, what’s important to you at the end of your life.

 After many years, it finally hit me that for my mom, WE, were most important. For 9 months, me, my husband and my brothers saw her every day. My oldest brother went before work, my husband and I went at lunch, and my middle brother swung by after work. My kids would visit every other weekend. Had we not all lived here, had we all not been able to visit so much, I don’t think she would have made it the whole 9 months.

The other lesson I learned is that there is never a great time to have these conversations. I will say that it is better to have these conversations around the kitchen table and not in the ICU. It’s better when you are healthy and not in crisis. But I know it’s better to have them than not have them. It also gets easier to have them once you start. This is not a one and done conversation. It’s also never too early to have them. Have them early and often.

I want to mention that of course, there are no guarantees in life and you may not even get the chance for your loved ones to make any decisions. People die from accidents or heart attacks or any number of other ways.

A few months ago, a dear friend of mine, had a massive heart attack and died in the ambulance before he made it to the hospital. It was a shock to everyone. He was 64, athletic and the picture of health. I attended the Zoom Celebration of Life and his young adult children were amazing in their speeches. They were so full of love. Of course, full of sadness. But no guilt or remorse. My friend had lived his life by example. His kids and his wife knew he loved them, they all knew how proud he was of all of them, he said “I love you” every day and he had left this world with nothing left unsaid. He gave his family a true gift.

I think about all of the families of the Surfside, Florida tragedy. People of all ages lived in that building. It reminds us that having these conversations is for everyone and not just for older adults. Breaking the ice and talking about your death, should help remove any guilt feelings and allow your loved ones to grieve without guilt.

So, how in the world do you get started? I’ve got a lot of resources to share.

Conversation Ready NTX is a local, grassroots organization focused on getting people to think about and then share their end of life wishes through free tools from The Conversation Project. We want to help people answer the question “what matters most” at the end of their life. Again, these are not discussions about funeral arrangements or medical interventions but rather discussions about what matters in the time period before we die.

The website is ConversationReadyNTX.com and we also have a Facebook Group that I invite you all to join. We learn so much from each other…especially hearing each other stories and experiences.

There are a ton of resources which are all free. There are videos and workbooks and a bunch of helpful websites. Before I talk about some of these resources, I want to share a few statistics from The Conversation Project.

Through their research, they have found that 70% of people say they want to die at home. Yet 70% actually die in a hospital or facility setting. Could it be because these people didn’t share their wishes? I can envision a scenario where, perhaps, if their loved one knew that their mom really didn’t want to die in a hospital, they could have called Hospice in sooner and then the family wouldn’t have had to call 911 and go to the emergency room just to have mom die there. She could have died in her home with hospice in place surrounded by her family.

80% of people want to talk with their doctor about end of life issues. Yet less than 17% have ever had a conversation about end of life issue with their doctor.

92% of people think it IS important to have these types of conversations. But only 32% have actually had the conversation. And, 50% have said that they feel relief from having this convo.

So, what does this mean? It means that we have a lot of work to do to help people to get talking and sharing.

Atul Gawande, a neurosurgeon who wrote a fabulous book called Being Mortal and is on the Board of The Conversation Project has a great quote, “Our ultimate goal, after all, is not a good death but a good life to the very end.”

So now I’d like to talk about the Conversation Starter Guide. I encourage all of you to go through it as well as share it with as many friends and family that you want. You can find it by going to https://www.conversationreadyntx.com/starter-guides

As you go through it, you will see that it is designed with a low bar for entry into for this tough and uncomfortable conversation.

The Starter Guide is value based. TCP has discovered that people have 2 fears: one-that we will not get the care we need and two-that we will get care that we don’t want. That is why it is so important to discuss what we want.

The workbook guides you through getting started to have the conversation. If you’ve never thought about this, you may not even know where to begin.

One of the first things to do is to finish this sentence:

What matters to me at the end of my life is_________________.

What do you value most?

This is not about CPR and feeding tubes– it’s about values and hopes and desires. There are no right or wrong answers for these questions.

This can be a simple and short answer like “I want to be pain free.” Even telling your loved one that you want to be pain free can be very helpful and guide them in their decision making.

At one of my workshops, a woman told me that she had a high pain tolerance but couldn’t handle being nauseous. Knowing this information is hugely important for her loved ones.

Another woman shared that she cannot see without her glasses. She filled in the blank by stating that having her glasses on at the end of her life is what mattered to her. She felt that if she should be in and out of consciousness, she would want her glasses on to be able to see who was around her. It may sound like a little thing but is terribly important to her.

For me, I had my first conversation with my family about 5 years ago. Because I was going to be working with The Conversation Project, I felt that I should not be hypocritical, and I needed to have this conversation. I will tell you that it is hard! No matter how you slice it, it is hard to talk about your death.

So, I wanted to keep it short and all I shared at that time was, if possible, that I do not want to be alone when I die. Of course, I’d prefer family or friends but if not, I’d like anyone, even a paid caregiver, a nurse, whoever….at this time, I feel I don’t want to be alone.

Then, I turned to my daughter who was 24 at the time, and she absolutely couldn’t speak. Tears poured out of her eyes. Her best friend had an accident at the start of their sophomore year and his death was still too raw.

I turned to my son, who was 20 at that time. He said that he really hadn’t ever thought about it but he thought that death seemed so intimate and personal that he would rather be alone than with a stranger.

Now, I just saw my daughter this last weekend and we talked about the fact that we need to revisit this conversation and talk a bit deeper. At 29, she’s now a totally different person, has read a lot of books on the subject and has a lot of opinions. The parents of her friend who died had set up a scholarship in his name and my daughter and a couple of other friends have been on the board of the charity and in charge of the selection process for years now. My son is now married and 25. I wonder if he still feels the same as he did when he was only 20?

Back to the Starter Guide.

The next section of the Starter Guide has “Where I stand” scales.

It contains several statements and you identify where you fall on the sliding scale. Your answers can help a loved one understand your values and where you fall along the spectrum of options.  Even if you choose the middle on every statement, you will still help your loved ones with making decisions.

The next section helps you visualize this conversation by thinking about who, when and where. Who is it that you want to have this conversation? A daughter, your doctor, your Mom? You may want to practice with a friend or cousin before you speak with a daughter or son or parent.

The workbook helps you visualize where you want to have the conversation. Do you picture sitting around the kitchen table or going on a walk and talking? Or would you prefer driving in a car so you don’t need eye contact? Nowadays, a Zoom chat may be a good place to talk.

When should you have this conversation? It may sound odd but 5 years ago when I had our first conversation, I did it over Thanksgiving break because it was one of the few times we were all together. Remember, the first time doesn’t need to be long and intense…it just needs to happen. You can always revisit and of course, change your mind. And remember, it is a dialogue and not a monologue, where everyone should share their thoughts. I would not spring it on your family. I’d email them the workbook ahead of time and give them a little notice.  

So, how to Start…the workbook has some sample ice breakers – “I attended this interesting session over the weekend and I’d to share what I learned….” Or, if a family member passed away you can say “You know, before Uncle Joe died he told his family his wishes and I’d like to do the same.”

Keep in mind that your thoughts and desires will evolve with you. The conversation will be ever changing as you get older. You may think one way when you are young and healthy and quite a different way as you age. Obviously, a 30-year-old will think differently than a 90-year-old. Its so important to have this conversation early and often.

A lot of people talk about quality vs quantity of life. If you are young with young children, you may feel quantity of life is most important so you can see your kids grow up because that is what matters to you at that stage in life. But as you get older, you may change your outlook and would rather have less time on earth but have more quality in your days. As I said before, there are no right, or wrong answers and we can change our thoughts as we change and evolve.

One of the biggest questions I get asked is how do you bring up this conversation to your aging parent. If you are their caregiver, you need to know what they are thinking but don’t want to feel pushy or be awkward. I think the easiest way is to ask them to help you with a problem. Tell them that you want to have this conversation with your daughter or friend or whoever but you want to practice on them. You tell your parent what you want and then, like any other conversation, you ask them what their feelings are. Have they ever thought about what’s important to them at the end of their life? You may be surprised to learn that they’ve been wanting to talk to you but just didn’t know how to do it either.  Now maybe they’re ready or maybe they’re not. But at least you’ve opened the door and will be able to revisit again. At the very least, you can print out the workbook and go through it together.

It’s so important that whoever you choose to be your proxy is capable of carrying out your wishes. Let’s say you want your daughter to be your proxy and you tell her that you don’t want any invasive procedures and you would prefer quality over quantity of life. Your daughter tells you that she just loves you so much that she will never be able to let you go. She will do everything possible to keep you alive. Well, maybe she shouldn’t be put in that position and should not be your proxy. Which is totally ok! That is why it’s so important to have this discussion.

There is another Conversation Starter Guide for those with Alzheimer’s. It helps to bring the person to the table when they really aren’t able to participate in this conversation.

I have a friend whose Dad was in a memory care facility and had just gone on hospice. He and his siblings gathered together from across the country. They brought all different points of view and honestly, it was a bit contentious and dysfunctional. He had the workbook and they spent 3 hours in a diner and filled out this workbook together. They then gave it to the caregivers at the facility so they would be able to allow their Dad to live out his life the way they thought he would want. The Dad passed away a short week later and the experience and using the workbook gave my friend and his siblings incredible peace of mind.

There is a workbook called the “Guide for talking with a Health Care Team”. This helps organize your thoughts to be as efficient as possible. Medicare has a billing code so doctors will get paid to have these conversations and document your thoughts in your record.

I want to share some insights that I received from an awesome doctor who now helps train other doctors about having these conversations. First of all, doctors are not taught end of life or death and dying concerns in medical school. There just isn’t any room for it. It may be an elective for some but it is not required. So, he shared with me that doctors are all human. Surgeons want to cut and doctors want to fix. Doctors want to cure. Some see death as failure. I’m not saying this is right or wrong, it is the reality. He told me that the better relationship a doctor has with his or her patient, the more rosy the doctor sees a prognosis. If she knows her patient has 3-6 months of quality life, she will focus on the 6 months and stress the longer time period to the patient. You know why? It's because doctors are human and they don’t like giving bad news and they don’t want to see their patient die. But, if the patient has previously shared their feelings with their doctor and opened the door, then it gives the doctor permission to be more honest and open with the prognosis.

I mentioned Dr. Atul Gawande earlier. I highly recommend that you read Being Mortal. It’s been a NY Times Best Seller for a long time. And if you’ve read it in the past, I’d read it again. I first read it 5 years ago and reread it last summer. It was like a totally different book for me because I was in a different place. It hit me in different ways the second time around.

Being Mortal is about Dr. Gawande’s journey dealing with his father’s mortality and how his father’s death changed the way he practices medicine. It’s not technically written and it’s fabulous. It also follows some other doctors’ stories and journeys.

PBS Frontline made an hour-long documentary piece based on the book. The documentary follows the journey of several patients at the end of their life. You experience what happens when people can talk about their end of life wishes. You can see how positive someone’s death can be when they are able to live out their life the way they want.

The Conversation Ready NTX website also has some great resources through video. Some short, some long. I encourage you to take a look at them.

There are also a collection of other websites. There is one called the “Go Wish” game. It’s an online card game that you can play to help figure out what is most important to you. You flip over a card, read the statement and rank it as very important, somewhat important and not at all important.

You can play this game with your loved ones too. It’s a great way to break the ice and get this conversation started.

 Finally, below is a beautiful poem by Dr. Karen Boudreau.

Don't Panic - It's OK

A Letter to My Family by Karen Boudreau, MD

If you are faced with a decision that you're not ready for,

It’s ok

I'll try to let you know what I would want for various circumstances,

But if you come to something we haven't anticipated,

It’s ok

And if you come to a decision point and what you decide results in my death,

It’s ok.

You don't need to worry that you've caused my death – you haven't –

I will die because of my illness or my body failing or whatever.

You don't need to feel responsible.

Forgiveness is not required,

But if you feel bad / responsible / guilty,

First of all don't and second of all,

You are loved and forgiven.

If you're faced with a snap decision, don't panic --

Choose comfort,

Choose home,

Choose less intervention,

Choose to be together, at my side, holding my hand,

Singing, laughing, loving, celebrating, and carrying on.

I will keep loving you and watching you and being proud of you.