LD 1313, An Act to Enact the Maine Death with Dignity Act, was introduced on March 19, 2019. The bill language builds on the
Palliative Medicine and Death with Dignity Co-Mingle
I have a lot of sadness around writing this. I’ve decided to officially resign from the volunteer rolls of the hospice organization I’ve served with in my community. This does not come as an easy decision. Truthfully, I’ve not been in a position to volunteer for some time now anyway. More importantly, I’m often reminded and all too aware of how my name and my points of view are considered by some in palliative and hospice medicine to be too controversial.
I know that some in the hospice community believe I am “anti-hospice.” Thankfully, those who actually know me and my work also know that I am a strong proponent of palliative care, of which hospice is an integral part.
I find the highest value in palliative and hospice care.
In fact, some of the richest experiences I’ve ever had in my life have come from interacting with the dying and those who care for them. I don’t want to sound cliché, but some of my best friends are hospice nurses.
What troubles me is this: some hospice folks are unwilling to discuss certain dying matters. And others want to but can’t, for fear of losing their jobs. It seems to me that folks who work in hospice should feel fully informed on Death with Dignity laws, so they will know how to respond to patients who have questions. Believe me, even in states where there is no law permitting end-of-life prescriptions, patients still ask about that.
The fact that over 90% of the patients who choose to pursue an end-of-life prescription are also enrolled in and receiving palliative care and hospice services up to the time of their deaths is clear evidence to me that all end of life options are important.
Not “either-or, but “both-and.”
I know these tools and the people who provide them can live and serve in harmony. The average length of stay in Oregon hospice is over 40 days. Here in Maine, it’s about 18. The Oregon statistic speaks to me of a vital, viable service being offered that does support quality of life and give needed time to people to feel as complete as possible in their lives before they die. In my mind and my heart, the end objective is to meet the needs of the one who is dying in a purposeful, compassionate, and open-minded way that honors who they are and what has meant the most to them.
I believe in dialogue when there is controversy.
I’ve dearly enjoyed my time as a hospice volunteer and I will continue to promote hospice and palliative medicine as a means to achieve quality of life as long as possible.
I will also continue to devote my time and energy to bringing visibility and awareness to how Death with Dignity laws work and how they are in complete harmony with the compassionate efforts of all end-of-life workers and caregivers to support peace, comfort, and respect to patient choice. I believe in discussing studied research on this issue. And I believe this education is important.
Valerie Lovelace, Executive Director, It’s My Death
I am inspired by the ever-growing network of Maine’s death-conscious citizens. Whether it’s downsizing and getting one’s affairs in order, handling our own dead, Death Cafe discussions on every mortality topic under the sun, funeral consumer advocacy, or enthusiastic activism in politics, Maine’s mortality-friendly grass roots are spreading faster than dandelions or Creeping Charlie.
If there’s one thing Mainers are good at, it’s being independent. That’s why we fly a flag in the state sporting the motto “Dirigo” or “I lead.”
Want to get involved? Do you believe dying people should have independent choice? Want to get conservative religion’s influence out of politics and out of your end-of-life?
See this simple, single page to get actively involved:
That’s it. That’s all there is. Get involved. Your death may depend on it.
Maine Death with Dignity Advocate Dies
Rebecca Vanwormer was an avid supporter of the 2015 Maine Death with Dignity bill, LD1270. She was a community activist in other ways, too; she brought Christmas back to Millinocket just before she died. Her family and community lost a wonderful human being yesterday.
I felt privileged to meet and spend time with Becky in June. She asked me to record her
testimony. That’s a powerful thing when someone literally hands you the end of their life, wanting you to put it on tape. She inspired me with her courage and raw honesty. She wanted Maine lawmakers to understand that having a safe-guarded end-of-life option like Death with Dignity is really important, because dying is a personal, private process. You know, sharing a personal story like that takes guts. Sharing it publicly take a LOT of guts.
It’s been quite difficult for all of us to see her like this
I can’t begin to imagine her experience. I received an email from Ken, Becky’s husband, a couple of days ago to let me know she was “declining rapidly.” He wrote:
“She has had family and friends visiting her, although I’m not sure how much she knows as to what’s happening, and it’s been quite difficult for all of us to see her like this. She’s still been able to say hi and wave and occasionally say I love you and good-bye.”
“It’s been absolutely heart-breaking to see her go from this strong, beautiful, energetic, vibrant woman with her beautiful voice and amazing smile to just a shell of her former self in days, going through all the very things she feared most from the cancer that has taken over her body. Not being able to communicate her needs, to be totally helpless and have to have myself, her mom, and the hospice nurses wash her and change her, to be bed ridden, to have her skin feel like it’s on fire and itchy all over.”
“All the things she wanted to prevent if only Maine’s legislature had passed the aid-in-dying law. I hope her story will help convince more lawmakers to change their minds and pass this law so others with similar situations don’t have to suffer, both the dying and their loved ones.”
I’m so sorry, Ken. I know Becky felt that her life and death would have greater meaning if the video helped others, especially our Maine lawmakers, understand more about aid-in-dying. I’m sharing her testimony and her story, because people need to hear that. I want people to know she understood that she was going to die, and she met that with a palpable sense of grace and acceptance.
IMD will continue educating in Maine to pass a safe law. Rest in peace, Becky.
Click here for Becky’s Christmas Story: East Millinocket woman loses to cancer at 43
Elections are Over and Guess What? You’re Still Going to Die.
Well, there we have it. Although there may have been times when all the campaigning, positioning, bashing, and political banter sounded like a matter of life and death, truly it never came close to being a matter of life and death.
“I’ll just DIE if [pick a candidate] becomes president.” Nope. Something else will kill you, but it won’t be the election results.
“It’ll kill me if [pick a candidate] ends up being my Senator.” Truly, it won’t kill you.
I don’t think I can live with [you guessed it: pick a candidate] as my [name any office you want].
Whether you like it or not, you’ll go on living with it, or kicking and screaming with it, but it won’t mean your demise. Something will, someday it will, maybe sooner rather than later it will…but there isn’t much about a campaign (at least not in the United States) that will kill you. Not yet, anyway. And I hope we never go there.
What does kill you? Studies have shown that the absolute leading cause of death is being born. Life is what kills you. Being on the planet in a meat suit–THAT is what kills you.
The truth is, we’ve had good presidents and bad presidents, We’ve had winners and losers in political power, and in the end it’s human resilience that prevails. It’s loving kindness, compassion, and wholeheartedness. It’s choosing consciously and purposefully a balanced way of being in the world, knowing at the cellular level that your personal timepiece is winding down, one in-breath-out-breath at a time.
I love the medical terms for in-breath (inspire) and out-breath (expire). Even as we inhale, our body systems charge and renew, inspired with sweet air–some say our first food. And exhaling, or expiring, facilitates a just-as-sweet letting go of that which cannot sustain oxygen breathers.
This cycle is actually one of transformation on a grander scale. The atoms entering your lungs have moved in and out of every other lung on the planet, since the beginning of lungs. Indeed, through the skies, the waters, the plants and the soil, and every other form on the planet.
Can you imagine it?
Sit somewhere quietly in a beautiful place, and breathe the planet. Allow yourself to know you are being nurtured by this entire planet and everything living on it right now, as well as anything that has ever lived on it.
The in-breath you take right now once inspired Einstein, Attila the Hun, and the Dinosaurs. Through all beings living right now (yes, even through Donald Trump and Hillary Clinton). It’s been through all beings long extinct.
And so, too, you nurture with your out-breathe in exchange. Your breath creates.
The thoughts you have or the words you carry in your mouth float out upon your breath into the world. What do you deliver on your breath? What are you creating? What do you receive as you drink the air around you?
It isn’t always easy to hold that kind of balance, I know.
But it’s a good goal to embrace. One in-breath-out-breath at a time.
Indian physician and homeopath, Rajan Sankaran, speaks about his homeopathic practice, modern medicine, and the recent concerted effort to discredit homeopathy as a viable healthcare option, despite the fact that homeopathy is the second most commonly used medicine in the world.
Homeopathy at the end-of-life is safe, chemical free, and can make it possible for patients to remain alert and aware, even up to their final breath.
Letting go of the ones we love is probably one of the most difficult things we humans have to endure. It’s never easy, and the way is fraught with doubt, fear, and hopeful wishes. The challenge for each of us is recognizing that no matter how badly we want something else to be happening, what really is happening is that our loved one is dying. And they will die with or without us.
We feel powerless. We want to put on a cheery face and a gird ourselves with a brave demeanor – stiff upper lip, and all that. Maybe we think that helps. Truthfully, it doesn’t. Being is what helps. Just being.
Rather than thinking of something brave, chipper, or clever to say, why not just say,
“Shit. I don’t even know what to say. I’m sorry.”
Being that honest and that vulnerable is what helps, and there’s nothing else like it in the world that will support being with your loved one every step of the way. Even to the final breath.
Yes, it hurts like hell.
But it’s worth it.
A couple of weeks before she died, Dee was dealing with anger, regret, and other difficult emotions and unresolved feelings. I remember a moment of awful clarity during which I realized that as I struggled with losing her, she struggled with losing everything. That moment was a turning point for me in being able to hold space for everything she needed to express.
This poem, written the day after she died, describes my last few hours with her.
Little Sister, 1959 – 2009
“The Man in the Moon is really a Woman,” I said,
And she smiled knowingly, sharing my secret.
Then she read to me from her Magic Book:
“There’s a blue fish.”
“And there’s a red fish.”
And I wept them into the river – she always did love Dr. Seuss.
I marveled with her through that last day as she reviewed her life and memories –
“It’s coming in bits and pieces, but I need more time; I’m not ready.”
“I’m not afraid to die, just afraid of the journey to get there.”
“Don’t be afraid, Baby Duck,” I whispered, kissing her head.
“You’ll know when you’re ready, just in time and not too soon.”
“Okay, thank you.” Nodding, a little girl again, believing me.
Then in little bits and pieces she shared her precious life with me again.
Emotions flickering over her face on fast forward – too fast for me.
Whispers, insights, sorting, shaking out, cleansing one by one.
I watched her check off each; an internal list, the final pages of her Magic Book.
“Okay, sissie, it’s time. Can you put my jeans on me?” Breathy, gasping.
I asked her if she was going to travel and she nodded again,
Wiggling her feet, whispering, “I want to wear my jeans.”
I pulled magic jeans over her frail legs, asking if she liked them.
And she smiled. The world is a great place when you wear magic jeans.
They must be like Superman underwear – they make you stronger, more able.
Holding her, reassuring, encouraging her to fly away,
I blew purple butterflies into her heart and then she was gone.
Valerie Lovelace, January 2009