(The author is a patient advocate, founder of Ending Well! Patient Advocacy, and is FEN’s surrogate consultant. She focuses on end-of-life care and planning, aiming to help people have a “good death,” and can be reached at Final Exit Network and LinkedIn. This piece first at appeared at KevinMD.com, the web’s leading platform where physicians, advanced practitioners, nurses, medical students, and patients share their insight and stories. KevinMD.com is regularly cited in major media. – Jay Niver, editor)
It never ceases to amaze me that some people do not realize they have the absolute right to make their own healthcare choices even if everyone else thinks it’s the wrong choice. Once they recognize that every medical option is theirs to accept or reject, the effect can be liberating.
In the Patient Self-Determination Act of 1990, this right to choose is outlined, including the right to refuse treatment, along with the right to create advance directives and decide who should make decisions for you if you become incapacitated.
The Act was enacted after 25-year-old Nancy Cruzan, who had no advance directive, was injured in a 1983 car accident that left her in a persistent vegetative state and on life support. After three years, her parents sought to remove her feeding tube because, in their hearts, they did not believe Nancy would want to live hooked up to machines.
Their request was not without controversy as right-to-life groups protested, claiming they were starving her. On the other side were journalists such as Ellen Goodman, who opined in the Washington Post: “Nancy came to represent the unintended consequences of technology, the side effects of our best intentions, the cruelty of our modern medical mercy. She came to represent something worse than death.”
The Cruzan family fought all the way to the United States Supreme Court but had no hard evidence about their daughter’s wishes, so they lost that round in their quest for Nancy’s right to “die with dignity.” The court ruled that no law prevented the “State of Missouri from requiring ‘clear and convincing evidence’ before terminating life-supporting treatment.”
However, the court also ruled that competent adults had every right to refuse medical care under the Constitution’s Due Process Clause, but because Nancy was incompetent, that standard had to be higher.
While this loss must have been a blow to the Cruzan family, the court’s ruling paved the way for advance directives and patient autonomy in making healthcare decisions. The Cruzans were finally allowed to remove Nancy’s feeding tube, and she died in 1990, nearly eight years after her accident.
Thirty years later, people are still confused about their medical rights. Recently, a friend told me she had a patient that was in for a procedure unrelated to her stage-four cancer. Afterward, the lady mentioned that she wished she didn’t have to have another round of chemo. She loved summer, and with chemo, she would be sick all the time, ruining the summer for everyone. My friend asked why she thought she had to have it, and the woman said her oncologist would be upset if she didn’t. She said she knew the cancer was killing her, and more chemo would not do any good.
She weighed the pros and cons of another round and understood the consequences of stopping. However, when she told her family and some of her friends, they made her feel like she was making a bad decision. They insisted she needed to keep “fighting.” The woman said she just wanted to be able to enjoy this one last summer.
My friend told the woman having the chemo or not was her individual choice to make. She said the woman looked at her in shock, saying it was the first time someone agreed that refusing the chemo was solely her decision. She was astonished that a medical professional had listened to her and didn’t try to talk her out of it.
While I have no way of knowing, I like to think the lady found the courage to listen to her inner spirit, and she said no to the chemo. She is free to enjoy her summer with a bittersweet poignancy, knowing it will undoubtedly be her last. I picture her taking long walks by the seashore, feeling the sun on her face, breathing the salty air, listening to the song of the waves, and enjoying the serenity that only a day at the beach can offer.
She is free to spoil her grandkids and read them lots of stories. She can gather with high school friends over a long lunch and laugh about adventures and secrets that only old friends can appreciate. She can have heart-to-heart conversations with her loved ones while gently preparing them for her eventual departure.
Rather than spending her summer dealing with the side effects of poisons designed to kill everything in sight, she can spend quality time with her family and friends. All the while, and after each adventure, she will be mentally checking things off her bucket list as the sweet summertime grows shorter and her life ebbs away.
From fireflies to fireworks, baseball to barbeques, summer always holds the promise of fun and adventure.
She can go to backyard cookouts; enjoy cheeseburgers, corn-on-the-cob, homemade potato salad, and blueberry pie as kids play volleyball barefoot in the summer grass. At the shore, she can savor steamed clams and sweet lobster meat dunked in drawn butter, and cap it off with freshly churned ice cream. Maybe there will be fantastic fireworks while she sits outside with her husband, listening to a summer symphony play the 1812 Overture.
Hopefully, she can have deep and meaningful conversations with her loved ones, so no one has any regrets or leaves anything left unsaid. Opting for the summer, she’ll create many happy memories that her family and friends will cherish long after she is gone.
Most of all, even if she can only do half these things, I hope she enjoys every minute of the rest of her time on Earth, knowing it was her choice to have that glorious last summer.
It is amazing how many people subject themselves to chemo to gain a few months of life.
One of the problems of objecting to medical procedures: it can potentially open you open to guardianship (in CA the word conservatorship is used for adults).
It was reported this week that a 92-year old woman’s son in Florida had filed for guardianship over his mother. He was distraught that she would not have a biopsy, recommended by a doctor that suspected she had cancer. Her reasoning was that she would not go through chemo or radiation, so why have a biopsy.
Guardianship/conservatorship usually removes all of your civil rights. The judge has sole discretion as to who your conservator may be. Problems can arise, such as family disagreements, that cause the judge to assign a professional conservator; conservatees find their lives completely controlled by a stranger. This stranger can (and often does) invalidates and replaces your estate plan.
Abuses were occurring so often in California regarding conservatees being locked up and denied visitors, mail, or phone use that the CA legislature passed a new law clarifying that conservatees do have a right to all of those things. Still, conservators can and do petition the judge to forbid visitation. Denied visitors and the ability to contract, conservatees have no recourse.
The Hemlock Society of San Diego’s Sept. 26th program “What’s Good And Evil About Probate Conservatorships – And How To Avoid The Bad Parts” at 1:30 pm via Zoom will cover this important topic. We invite you to join us. Sign up for the HSSD newsletter to receive a reminder about the program.
More information on the FL case: https://www.tampabay.com/life-culture/2021/08/26/a-brandon-woman-92-fought-her-guardianship-things-escalated-quickly/
The basic concept – of having and exercising choice at the end of life, despite social norms of capitalized and medicalized dying – seems sound and supportable. But “f)rom fireflies to fireworks, baseball to barbeques, summer always holds the promise of fun and adventure” sounds more like the impossibly cheery text for a Hallmark greeting card than an observation about the reality of dying, in the near term, from cancer. In addition, the activities that the writer imagines for the patient would not be very likely for most humans; it is a list of distinctly upper middle class, privileged activities unavailable to most. In fact, for most, being “(a)t the shore” savoring “clams and sweet lobster meat” etc. while actively dying is not even remotely possible. I think that the best approach to this issue is to be realistic and knowledgeable about probabilities and options when dealing with disease and dying. Disease can be brutal and death undignified: that’s how it is, and whether one’s view is utopian or dystopian, the essential point is that we should all have the right to die well, on our own terms and at a time that we choose, without medical intervention if we do not choose to have it. Although I appreciate and support the author’s basic premise, I do wish that this author had considered – and advocated for – greater rights for patients to die on their own terms than simply refusing further medical treatment for terminal cancer.
Beautifully written; on target! Thank you.
well done
The point of my essay was that many people don’t know that the ultimate decision to endure or forgo a treatment lies with them. I hear this repeatedly from people who are genuinely conflicted about a treatment option because they do not want to disappoint their doctor or family. This is a real woman contemplating her last summer in New England. The activities I envisioned for her are available to anyone and everyone, not only for the “distinctly upper middle class.” Nor are they “privileged activities unavailable to most.”
On the contrary, in my experience, walks on the beach are free and seafood is inexpensive. Summer concerts in a park are also free; for example, the Boston Pops holds an annual concert on the Fourth of July, free to thousands of attendees. People, rich and poor, have summer barbeques with homemade food and sometimes see fireflies or go to local baseball games. Most of the activities were doable to this particular woman at this stage in her cancer trajectory. I purposely wrote it with a cheerful “hallmark” spin. I am from NE, and I pictured myself doing these things as if I was in her shoes. Yes, she had stage four cancer but was not on her deathbed; she had the time to choose activities affording her and her family and friends more quality time rather than chemo’s promise of extended time with guaranteed suffering.
For the better part of the last twenty years, I have written about and advocated for assisted dying and choice at the end of life. I have sat at the bedside of many dying people and know what death looks like. My mission in life is to counsel and walk with dying people on their journey, and my goal is to help them have a good ending whenever possible. I hope my writing shows people they have some choices at the end of life.
I thought your writing about the elderly lady was beautiful. I would like to think of my own grandmother, who suffered pancreatic cancer and loss of vision to degenerative muscular at age 97. I know she was such an active, strong and determined lady that the whole community just adored.
However, as her granddaughter, we talked and shared many things due to each of our own experiences in our lives. I know she suffered greatly, not because of cancer or loss of sight, I truly believe it was more painful to find a way to say goodbye, loss of independence, and what we take for granted, of simply seeing someone smile.
So, it may sound like a Hallmark card to some, but in the end, I think we need closure and reminding ourself of the kind, loving memories of the person in a respectful way. Even if it seems to be in a social economic class, it doesn’t matter because knowing the individual and knowing their likes and dislikes, we can create closure for ourself and be constant when your check-out date comes.
This is something we do not have a choice in life, we all expire, and we don’t get much of a choice when or how. So it is important to not waste time taking it for granted; anything can happen.
I believe people should have control over their own care and be able to make a choice over their own life … a long painful death creates so much sadness and financial strain and even creates enemies within families.
Don’t get me wrong, I support people that want treatment, too. I’ve personally been through so-called treatment that has made things worse, not better, and I am tired of the pain, loss of hope, and have to start over again with more struggles. There is no cure for a rare muscular dystrophy; just false promise and hope with painful surgeries.
I decided enough is enough, I am done, and hope my family will understand my exit. Everything the author explained about walking on the beach, listening to nature’s wave of music, I hope I can experience these in another life, if there is one. Point is, we should not judge until we walk in their shoes and listen.
I just don’t understand how a guardian can overturn an advance directive or living will. All of this reminds me of the Terri Schiavo case, and the life she had before her accident and so many years in a nursing home and the family turmoil. I have not come across anybody that would have wanted anyone to suffer for so long. I think if each of us asked ourself would we want to end up like her, we would say no, and this is tricky because of our own conscience of dealing with regret to tell someone to pull the feeding tube. It goes against human nature to help save a life.
I believe in planning and controlling one’s final exit, but it has to be done rationally with a reasonable amount of time so there aren’t mistakes. Who are we to judge other people when we ourselves do not know what our own future holds? Instead, we need to listen and be respectful and have compassion for each other.
Again, thank you for writing a beautiful story. It brought lovely memories, as well as opening thoughts to different views from the other comments.
Amy, thank you for your kind comments. I’m glad you understood the essay and that it gave you some beautiful memories. Choice at the end of life is the key for us all. I always thought Terri Schiavo’s husband was brave to fight for the death he believed Terri wanted. He was the kind of surrogate everyone should have, not backing down to pressure from any source, including Congress and POTUS.