I heard an excellent story on NPR the other day, about How Doctors Die, and how even though the majority of people in the U.S. say they want to die at home, surrounded by loved ones, less than half do and most die in the Intensive Care Unit (ICU). In Tucson, where I’ve lived the past 8 years, only 10% die at home. This is partly because when we are very sick, doctors are not likely to tell us the whole story, and we are not willing to ask the important questions – what are the implications of this treatment, what will be the quality of my life, how much time might this treatment add to my life, what are the risks and benefits…?
it reminded me of how difficult it was for the doctors to tell us what was really happening when Elizabeth was in the ICU. She’d had 2 chemo treatments when the lymphoma had spread to her brain, that had not shrunk the tumor. She’d had brain surgery to “debulk” the tumor, which had reduced the size of one tumor, though now we learned there were two in her brain, and probably more in her spine. The surgery had increased the swelling in her brain, necessitating a 2nd surgery to remove part of her skull, and then a stroke left her paralyzed except for her right arm and head. She was intubated, meaning she couldn’t speak, and it was so painful that she tried to pull the breathing tube out if her hands were free.
Elizabeth had told me clearly when going through her first chemo treatments: “Mom, I don’t want to go through years of treatment for cancer only to die of it. I don’t want to live like that.” I looked at her and I said “you won’t”, knowing somehow, that it was true, she would not.
But the doctors were still coming to the ICU each day and telling us she could go to rehab, learn to walk again, she’d need radiation to her brain, a different chemo drug…and I was a believer still, not yet seeing what was in front of me. Powerless, and still hopeful. Around the 6th night she was in the ICU, in the hallway, our favorite nurse said to me “I heard from your friend that you’re starting to talk about hospice.” I was shocked. That was the first time I’d heard the word used in relation to Elizabeth, and we had NOT started to talk about hospice! I was angry at her, felt violated and that she’d crossed some line. Only later was I incredibly grateful for the one brave woman who would dare speak the truth.
The next morning, after some time had allowed this idea to sink in, I asked the oncology team to tell us what was realistic. Did hospice make more sense than planning to continue treatment? Only then, when confronted, did they say yes, hospice was probably the way to go, that the treatments being discussed weren’t likely to be successful. They also passed it off to Elizabeth’s specialist, who had never come to the hospital, saying he’d have to talk to us for the final word. He came that day I think, and sat with me and Greg, and told us that she could try more chemo, or radiation, but it would likely only add days or weeks to her life and he didn’t recommend further treatment. There was no question in my mind that Elizabeth wouldn’t want that, and I didn’t want that for her either. All I wanted then was for her to come home, be out of the ICU, in a beautiful, peaceful place where we could care for her ourselves. Dr Miller also told us that if he let himself, he’d be sobbing along with us, but he couldn’t. That he wanted to be the hero who saved her, and he hated that this wasn’t the way the story was going to end. I know he didn’t want to be there either, having this conversation. No one wants to be the one to tell the parents of a 22 year old young woman that she will die soon.
We still had to fight hard to get her breathing tube removed, as she had a hard time passing their breathing test, though she was breathing on her own. The ICU doctor was afraid they’d have to intubate her again, if she didn’t have the strength to continue on her own. I knew she’d be fine, that she needed to get the breathing tube out, so we could take her home.
Finally, after days of promises and disappointments, they removed the tubes (partially because her dad had a rare, but necessary, blowup at the ICU doctor). She breathed fine, and she could speak again! I then told Elizabeth what Dr Miller had said, that there were no more treatments to try and she could come home. She looked at me and said, “I’m relieved.” I looked in her eyes and said, “I understand.” Elizabeth said, “I’m so glad you understand! I was afraid you wouldn’t.” I told her of course I understood, that she had done everything she could possibly do, and I just wanted her to come home where I could take care of her, and she wanted that too.
She’d had a feeding tube in, and as soon as her hands were free, she tried to pull it out. I explained that she might not be able to eat, as we didn’t know if she could swallow still, and asked if she understood what that meant. The doctors advised against it. She said yes, she wanted it out, and got it most of the way before a nurse could help her. Once that was done, and she wasn’t attached to the machines, we arranged quickly with hospice for a bed to be delivered to our home, and she came home the next day, after 10 days in the ICU.
If that nurse hadn’t spoken up, if we had been compliant and unquestioning, if we didn’t have great family support, a friend who is a doctor…Elizabeth might well have lived her last weeks in the ICU, hooked up to LOUD, painful, machines, with ICU psychosis (an actual condition they acknowledge there) from bright lights 24 hours a day, nurses waking her up every few hours, not able to speak, eat, laugh or just be.
As it happened, she came home and lived two more extraordinary months. The most beautiful, grace-full, love-filled times I’ve known. There was healing and completion in many relationships. Time with her sister. Visits and laughter with family and friends. Singing bowls played. Silence. Books read. Poetry listened to. Soft sheets. Daily massage. Cuddling. Favorite foods. Music of all sorts – from Graceful Passages, Beyonce, Ashanna and Wu-Tang Clan. Fresh roses and altars with sacred objects. Soft light, birds, flowering plants and trees outside the windows. We had time to talk of fear, of death, of love, of acceptance, of regret and loss, and joy and peace…It was so beautiful. And I am so blessed to have shared that time with her, and so immensely grateful it happened the way it did.
If I’m very lucky, I will die as she did (except for the Wu-Tang Clan), surrounded by love, being loved, and being Love.
I recommend filling out 5 Wishes, a living will written in plain language, that gives great options for how you might want to be treated if you can’t speak for yourself. Take some time to think about how you want to live and how you want to die…
Luminous Blue 
Love this sad eye opening story .
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Thank you Frances. with love, Lucia
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I’m so glad that you had that time at home with her. Though sad, those days of being able to care for her on your own will remain so important to you, as I’m sure they were for her. We were also fortunate enough to have my mama P home in her final days. I feel so blessed to have had that time in private. So many are less fortunate! Giant hugs to you again. 🙂
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Yes, I’m so grateful to have had that time in our own space, away from the constant interruptions and “doing” of the hospital environment… Though vital at certain times, the end of life is not a time I’d want to be in the hospital!
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Wonderful post, Lucia. These are things we should all be thinking about.
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Thank you Michele! It’s easier to think about in some ways when it seems far away, but when it’s a real possibility I think it gets harder for many of us – and well worth thinking and talking about!
blessings, Lucia
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Dear Lucia, your words will help others through the trials of medical problems. The only reason Patrick finally was allowed to die at all was that a new young nurse made a mistake and pulled his feeding tube out. When one has esophageal cancer it is common for a feeding tube to be placed in long before you are “dying.” He had written a will about many things, but life-saving devices that are in BEFORE you are actually “dying” (as if we all are not but that is for another time) means that to pull it out is tantamount to murder, kevorkian style, which they won’t assist with even in Oregon. But once it had been pulled out by accident (did not hurt), they had to have my permission to put it back in, trip to the hospital, etc. I did a quick confab with the family and said no. I spoke to him, and he was scared (my brother Patrick was always scared of death), and I had to tell him he was dying, actively dying, that there was no more hope, just more painful things to do for no good outcome. He was angry at me, but better me than his kids. I have argued with him my whole life, and so I felt one more would make no difference — but his kids had a terribly hard time with it. We all had to show up for a meeting where they advised us that he would now be wasting, uncomfortable, etc., which, of course, scared him more. He was mad at me all over again. Hospice said he would feel NO discomfort, especially with the drugs he was on, and fortunately, his daughter is a hospice nurse, though in this case she was his eight-year-old kid. It took him about seven days after that. If not, they would have had him hooked up to everything for another 2-3 months of discomfort, midnight trips to ER, and god knows what else. BTW, he was never in any more discomfort than he was in with the cancer.
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Thank you for saying all this! It is frustrating to me that there is so much misinformation, especially about what hospice offers, and about how the body knows how to die, when following it as the guide. I am grateful that we’d been told by several nurses and a doctor, that when Elizabeth stopped eating and drinking, that would allow her to have the easiest and most pain-free death, and it was like that. I continued to offer, but always honored her responses. We were so blessed to have such a graceful journey, and I’m certain it was helped by so many praying for her/us, and by the energy healing that was being given as well, which I haven’t written much about yet.
I’m sorry about your brother’s death, but I’m glad you were able to help him have a peaceful passage, and could advocate for him in this way.
blessings,
Lucia
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It is so hard for a mother to guide her precious daughter through the valley of death.
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Tersia,
yes, it is. And yet I’m grateful that if she had to go, that I was gifted that time with her to support and guide her. It would have been much harder for me if it had been any other way! blessings, Lucia
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There’s another side to death, and you and Elizabeth so shared it while she was here. What an extraordinary gift not only to you, but to those of us you share it with. We just don’t talk about death, and every time someone dies, we’re as shocked as if they’re the first to do so. I know we’d grieve no matter what, but I wonder what a different experience it would be if death wasn’t so hidden.
I’m intrigued that I was determined that death shouldn’t be hidden from Philip, which I wrote about when I posted about taking him to his grandfather’s wake when he was not-yet-two. And among the papers I found in his room after he died, there was a short essay he’d written, in which he talked about being at the wake. He was so little, but he remembered.
Of course, I never imagined this was how it would all play out…
They’re teaching us, Lucia. This certainly isn’t the end of things; but how does one live in the face of that? What does it change? Maybe if I keep paying attention, I’ll figure it out.
So much love to you.
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Interesting that you took Philip to a wake at that age, and Elizabeth came to my grandmother’s funeral when she was 21 months. I remember clearly once we were home, that she told me that “Bama”, my grandmother, was in the room with us – she could see her. I was startled, as I’d never seen spirits or knew anyone who did, but I just told her that I couldn’t see her, but was glad that she could. She was a teacher for me in so many ways, from before she was born, and now after she died…
I wish I’d been willing to talk with Elizabeth about death while she was going through chemo, but it felt like a betrayal to life in a way, and I imagine many people feel that. If I acknowledged that death was a possibility for her, I felt disloyal, like I was conceding that the treatment might not work. And I needed to have NO doubt in my mind that it would work…Still a conundrum. But I have to believe that was my job, to hold that steady optimism, and there were others who were able to discuss the specter of death with her, and there was time enough for that…
So much love to you Denise. You’re in my heart, Lucia
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I don’t know if you read the post I wrote about me taking Philip to the wake, so excuse me if I’m repeating myself… ;o) Before the wake I told Philip we were going to see Grandpa Bill, that he would be lying down, and he wasn’t going to get up. Is that okay, I asked? Then I picked him up and put him on the table to fix his little outfit, and I said, “Philip, where’s Grandpa Bill?” He lifted his arm straight up, pointed to the ceiling and said, “In the light.” I thought I was going to fall down.
The two of them, Lucia; they were in touch with something early on. And I know people say children are closer to that, having just come from it; but not all children are like this. From the view of what purpose did they serve, clearly they were here to teach us what death isn’t.
I, however, am not being a particularly good student at the moment ;o(
So much love back, Lucia; love and hugs. ;o)
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I don’t remember reading that, but not surprised – they are amazing! Take it one day at a time, and try not being hard on yourself. You can call anytime if you want to talk…love, Lucia
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I believe that there really is something that can be called a good death, one that is surrounded by people we love, the animals that love us and the things that daily give us joy. I know congradulations is the wrong word, but it is suited none the less.
I am so happy that Elizabeth was able to die with all of the things that were important to her. I hope that one day I am lucky enough to have a good death as well. May God bless all of you and help you ease the pain in your heart from losing Elizabeth.
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Jacqueline, thank you so much for writing. I agree that being supported in dying the way we choose is a good death, and I’m so grateful I was able to do that for Elizabeth. I so appreciate your blessing!
blessings, Lucia
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i agree with you 100%. I strongly believe the way we die is every bit as important, if not more so, as the way we come into this world. The hospital where I volunteer has a program for patients with terminal cancer who want to die at home.
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Fransi,
yes, it is so important, and so individual. It’s good to know that more institutions are beginning to listen to people’s wishes – that is how things change, when we listen to our hearts and speak up for what we need…
It’s wonderful you volunteer!
blessings, Lucia
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My father decided he had had enough and stopped taking all medications unbeknownst to us . When I think back on that time I would have wished he would have rejected those meds years before he did. So much pain and suffering. And for what? To line the pockets of big business.
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Thank you so much for writing. It is hard to watch those we love suffer and in pain. I’m glad your father knew when he’d had enough, and was able to make that decision for himself. I do trust we each have our own journey, but the more people ask questions and listen to their own bodies and their hearts (rather than the doctors and the families sometimes), the easier it is to have the kind of death they say they want – at home and with their beloveds by their side.
blessings, Lucia
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This is an amazing journey Lucia and so very bittersweet. Your love for Elizabeth is so very evident and deep. To love your daughter enough to let go shows much courage, strength and fortitude. We are blessed that you have shared with us your amazing Elizabeth and the love of her wonderful mother : ) Many, many blessings.
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Betsy,
Thank you so much for participating in this journey. It continues to bring me healing and nourishment, to share these stories. Thank you.
blessings, Lucia
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You got two glorious months, we got two great days after 12 weeks in ICU. It’s all relative. Those two days we got were so important. After weeks of asking, my buddy got the go ahead to stop treatment. It is a decision I don’;t think she will ever regret. If they cannot live a life with some quality it is only right they should be allowed to die a happy and peaceful death. Lovely post. I am so glad you met the right person at the right time who changed the course of treatment and allowed you to have such a special time together.
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Oh Tric,
yes, it’s all relative. I’m so glad your young friend had that time to come home, be with his loved ones, in his familiar environment. It’s important for the one who is leaving us, as well as the ones left behind. I’m so sorry he had to go, but grateful that you shared his story with us.
I am immensely grateful for so many individuals who assisted us in our process, known and unknown!
blessings, Lucia
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So important for us to read this, Lucia. Thank you. Crossing the line from doing everything we can to save our loved one, to then realizing that the greatest gift may be to discuss and support conscious dying, is a rite of passage for us, as well. It takes great courage. The way in which you faced this transition with Elizabeth–offering healing sound, soft textures and gentle light, the beauty of nature at the window, loving visits from family and friends, talks about fears, love and acceptance–all of these are healing to the soul. And now these ways of loving are healing to us in your re-telling of this time. They prepare us for our own encounters with finite lives and the beauty and bonding that are possible to ease a holy transition into Grace.
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Illona, thank you for such beautifully expressed sentiments, and warm words of encouragement. My hope is that in sharing these stories they can be both healing, and offer alternative ways of transitioning for anyone who needs. Thank you! blessings, Lucia
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