Serious illness isn’t just a medical event. It’s all about the family, too. Likewise, hospice volunteers try to ease a family’s burden, not just the patient’s. Wrote about that for KevinMD.com. You can read it here.
I’m sure you’re as sad as I am, on hearing the news about Jeopardy’s Alex Trebek’s Stage IV pancreatic cancer diagnosis. Can we even imagine Jeopardy with someone else? Well, apparently, Alex can’t either because he’s vowed to “fight this” and “beat it,” and make good on the remaining three years of his contract.
But I’m sad too, at his reliance on the kind of terminology that seems to infect so much writing about serious illness. It’s a battle. No, it’s a war. You want to win it.
Here’s what comes from seeing illness through that lens: if your disease progresses, does that mean you’re not fighting hard enough? If you’re too tired or even grumpy to be positive and put your best foot forward, does that mean the disease is winning the battle? And if your family and friends are urging you on to keep fighting, does that mean you’re disappointing them and that it must be some character weakness in you, if you just don’t want to?
Illness can be unpredictable, wily and complicated. It is not necessarily amenable to your strength of will and your determination to overcome it. Instead, how about dedicating yourself to treatment, doing your best to eat, sleep and live as well as you can for as long as you can?
I would have liked to have heard that from Alex. I also think he has a great opportunity to teach his audience about the nature of serious illness, the shock to the system, the ups and downs, the complications, the satisfaction of good days. And how great would it be if he sent out another message, telling us about his advance directive, and why he made the choices he’s made?
So I wish nothing but successful treatment ahead for Alex, and at least another three years on that contract. But please, no more war metaphors!
Welcome to the new year!
We are now in the midst of the 2019 film awards season, after the kickoff of the always amusing and entertaining Golden Globes. It reminds me that for some time, I’ve longed (in vain) for some kind of media awards event for accurate portrayals about late life. But to whom would those awards go? Alas, few recent films and TV programs might qualify.in late life, frailty, illness, death, loss and grieving don’t translate into blockbuster ticket sales.
But in the past year I’ve found a few standouts, mostly online, that deserve recognition. So in the spirit of the season, let’s call it the “Comfy Awards,” and I’m awarding “Comfys” to:
BoJack Horseman, “Free Churros,” Season 5, Episode 6, on Netflix
I should tell you that I feel that animated films and television programs can have more artistry, humanity and complex storytelling than many conventional live-action films. I’m a huge fan of the Toy Story films, Inside Out and most recently, the brilliant Isle of Dogs, for example. I’m also a huge fan of Bob’s Burgers on TV.
But right now BoJack Horseman is probably my favorite. This Netflix series chronicles the “Hollywoo” (that’s what Hollywood is called here) life of BoJack Horseman, a self-loathing and depressed former TV sitcom star, voiced by the actor Will Arnett. The premise of this world is that a dizzying variety of anthropomorphic creatures interact easily and regularly with human beings. BoJack’s agent, for example, is a cat, Princess Caroline, voiced by Amy Sedaris. The show is by turns hilarious, bitingly satiric, poignant and occasionally moving.
“Free Churros” is a stunning example of the latter. It consists of a 20-minute monologue by BoJack, who is delivering a eulogy to his mother. It is more of a stream-of-consciousness and it artfully suggests why BoJack is as self-involved, troubled and self-destructive as he is.
This is what struck me: Loss and grief are so much more complicated for those who have had strained or stormy relationships with their parents. There’s so much unfinished business. So much anger and resentment on top of the heartache of feeling a void that will never be filled. BoJack clearly had a fraught relationship with his mother (and an even more difficult relationship with his father). This episode beautifully captures all of pain and ambivalence about losing a parent in these circumstances. And still manages to end with a very clever joke.
“What Doctors Know About CPR,” Topic (online magazine)
I think it’s hard to prepare an advance directive if you don’t know precisely what some measures – like cardiopulmonary resuscitation (CPR) – really entail. Most of us have a general idea, probably from watching heroic and often extremely successful CPR episodes on our favorite medical TV shows. And using that as our guide, we might reasonably think, why not opt for that? There are plenty of reasons why not, in fact.
But it’s one thing to be told, or to read, about the risks and dangers of CPR; it’s quite another to see a graphic representation of what the process and its more often than not ill effects are. For that, we thank Dr. Nathan Gray, a palliative care physician at Duke University School of Medicine, who wrote and illustrated a graphic piece about the realities of CPR for Topic, an online magazine.
“CPR begins when a heart stops, the last domino to fall on the cascade toward death,” Dr. Gray writes. He illustrates a Code Blue being called, the mechanics and impersonality of the process and the statistics showing how few people actually survive intact.
“Until you witness it in person it can be hard to capture the inhumanity of our medical routine,” he writes. He urges the medical community to not let technology interfere with its humanity.
The piece is essential reading, and undoubtedly I will be using it in future talks about advance care planning.
Time Goes By blog, Ronni Bennett
Last fall, Bennett’s doctors told her that her pancreatic cancer had metastasized to her lungs and her peritoneum (which lines the cavity of the abdomen) and that there were treatment options but no cure for her condition. Now, if I’d been given this news, my first inclination would probably have been to hide under the covers in bed. Bennett’s inclination, though, was to write about it. And to keep writing, because for her that was a way of better understanding herself. Her hope was to approach the last chapter of her life “alert, aware and lucid,” she said.
“There’s very little about dying from the point of view of someone who’s living that experience,” she told Kaiser Health News. “This is one of the very big deals of aging and, absolutely, I’ll keep writing about this as long as I want to or can.”
Reading Bennett is, in fact, like having a great talk with a good friend. She is great company, amusing, touching and honest above all. About what she calls her terrors. About the ridiculous moments (she needs a new heater and thinks, Really? Now?) and the transcendent moments (a carefully guided psilocybin trip that she says has given her a greater sense about life and death). She has a large, avid readership and her honesty has made it possible for readers to share their stories, too. She also posts “The Alex and Ronni Show” — videos of her Skyped conversations with her ex-husband.
Most recently, she wrote: “However short or long my remaining days may be, it is a great gift I have received, knowing my death is near. It led to what I think is the most important question in the circumstance: what do you want to do with the time that remains?”
That’s a question we all need to think about. So, I’m awarding a “Comfy” to Ronni Bennett for the great service she is doing for all of us.
Do you have any suggestions for “Comfy” awards? I’d love to hear about them!
Hawaii has become the latest state to enable medical aid-in-dying, and public opinion has been shifting more in favor of it in the past couple of years. It’s still an enormously controversial subject and too often advocates on both the “pro” and “con” side shed more heat than light on it. I wrote this blog piece for http://sixtyandme.com in hopes of providing a little light.
Spoiler alert: I am opposed to medical aid-in-dying. Not for religious reasons, or because it violates the medical principle of “do no harm” or even because of fear of the “slippery slope” that would harm the most vulnerable among us.
In short, it seems to me that this evolution is more of a striking and continuing indication of the sorry state of end-of-life care currently, than it is a rational health care solution for those suffering terminal illnesses.
You can read the piece here: http://sixtyandme.com/exploring-both-sides-of-the-physician-aided-dying-conversation/
Here’s my early Valentine’s Day gift to you! It’s a chance to win a FREE Kindle version of my book, “Last Comforts: Notes from the Forefront of Late Life Care.”
Enter before Feb. 14 and you could be among the 20 winners of this award-winning book about educating ourselves and our loved ones about the best possible care in our later years, to avoid medical crises down the road. It’s a book with a lot of heart and a lot of practical guidance, too!
The giveaway will only last from Feb. 1 to Feb. 14, so enter now. And if you already have the book, be sure to tell your friends!
We’re in the midst of holiday season, and for many of us that means family events, gatherings with our friends and other celebrations. And of course it means lots of eating. An abundance of goodies that are sweet, savory and everything in between. That’s no surprise, considering that in our culture, food is one of our basic expressions of love. It’s one way we nurture each other and connect with each other. It’s comfort. A chef I met last year summed it up so clearly. “All I ever wanted to do,” he said, “was to feed people and make them happy.”
For those who are nearing the ends of their lives, though, food not only becomes less and less of a pleasure but also less and less necessary. That’s a hard concept to wrap your head around and even harder to confront when you see this happening to someone you love. A person’s lack of appetite is a powerful and unwelcome symbol of decline, and a harbinger of the loss we will soon experience. If only Mom or Dad would eat, you might think, they could get some strength back, feel better and slow the progression of illness.
As a result, there is a giant misconception that the dying suffer terribly if they don’t eat or drink anything; that they will die of starvation or dehydration. Further, that people responsible for their care are cruel and inhumane if they do not feed the ill, or at least give them fluids. But when a person who is terminally ill stops eating, he or she cannot process food and fluids. Forcing the person to eat does not help that person to live longer, feel better, feel stronger, or be able to do more.
When a man I’d been visiting for a several weeks in a nursing home recently reached that point, his sister poignantly asked me, “Can’t we get them [the nursing home] to give him a feeding tube?” Of course she didn’t want to see her brother steadily becoming weaker and weaker. Of course she didn’t want to lose him. She believed that he would get some strength back if only he would eat more. But it wasn’t lack of nutrition that was causing his decline; it was the cancer.
Her brother’s advance care directive, in fact, called for no artificial nutrition. The fact is, at that point artificial nutrition and/or hydration makes people feel bloated, nauseated, and/or develop diarrhea. It does not relieve suffering. Here’s what the American Academy of Hospice and Palliative Medicine has to say: “For patients near the end of life, artificial nutrition and hydration is unlikely to prolong life and can potentially lead to medical complications and increase suffering.”
It’s better, the experts say, to offer a little food or something to drink, and if your loved one wants it, even a minimal amount, fine. If not, don’t force it. There are other ways to continue to nourish your loved one, if food and fluids are no longer an option. A light, soothing massage. Playing favorite music. Or just sitting quietly, holding hands, offering your presence and your love.
Addressing Nutrition in Advance Directives
It’s important to address the issue of nutrition in your advance care directive. It may not be enough just to say “yes” or “no” to artificial nutrition and hydration, though. Recently I came across a useful document about this, published by End of Life Washington. It addresses the issue of feeding-by-hand, which could be an issue in long-term care facilities caring for people with advanced illness and/or dementia. (And it certainly underscores the importance of documenting the advance care goals and preferences of people with dementia early in their diagnosis.) You can read the full document here.
At the heart of it, the document states, “If I accept food and drink (comfort feeding) when they’re offered to me, I want them. I request that oral food and fluids be stopped if, because of dementia, any of the following conditions occur:
- I appear to be indifferent to being fed.
- I no longer appear to desire to eat or drink.
- I do not willingly open my mouth
- I turn my head away or try to avoid being fed or given fluids in any other way.
- I spit out food or fluids.
- I begin a pattern of coughing, gagging or choking on or aspirating (inhaling) food or fluids.
- The negative medical consequences of symptoms of continued feeding and drinking, as determined by a qualified medical provider, outweigh the benefits.”
This document does not replace your advance care directive, but it is a supplement to it. This organization also has a detailed general advance care directive as well as an advance care directive for those with Alzheimer’s or other forms of dementia available on its website. They’re worth a look.
In the meantime, I wish you a bountiful and joyful holiday season, filled with precious times with everyone you love.
Recently I had a chance to see how the human heart and spirit can overrule the rational mind, even in hypothetical circumstances. At a local educational event on palliative and hospice care, a woman in her 80s in the audience was attentive and engaged during the presentation. During the discussion that followed the presentation, she talked about how she wanted to look into becoming an organ donor.
But then, she asked the experts if her heart stopped and if she had decided to opt for CPR but it didn’t work, “Can’t there be a miracle?” In other words, before being pronounced dead, couldn’t there be some other way to revive her and enable her to live on? And would she be pronounced dead before her miracle kicked in?
We all want miracles, do we not? We want to have hope when all evidence points to the contrary. That’s why I found her question so poignant, so human. This woman, who had at first seemed to be a realist regarding the question of mortality – accepting it on an intellectual level – was at the same time wandering in the realm of magical thinking.
We’re all susceptible, truth be told. But there are a few things to keep in mind to avoid wandering into this realm ourselves.
I blogged about it for the website sixtyandme.com, and you can read it here:
Wishing you all a wonderful start to summer, this coming weekend!