Tag Archives: dying

CDC weighing new opioid prescribing guidelines

Anyone who is dealing with chronic pain or caring for someone with a chronic pain condition being treated with opioids will want to pay close attention to the Centers for Disease Control’s updated opioid prescribing guidelines for doctors.

The public comment period has ended and a draft of the guidelines has been completed. The CDC’s final recommendations will follow.

I all too well remember the 2016 guidelines. Doctors were warned about the upcoming changes in 2015, the year my mother died, and those guidelines (along with the doctors’ gross misinterpretation of the guidelines) caused my mother to die an agonizing death. Others sadly experienced a similar fate. Some people who had been on a successful maintenance regimen of opioids found themselves suddenly cut off by skittish doctors. Some people turned to the illicit drug market. Others committed suicide because they could no longer endure the pain.

NPR reviewed the draft document of the revised CDC guidelines. Officials blamed doctors for misapplying the CDC’s 2016 guidelines, saying it was supposed to be a “roadmap” not a “rigid set of rules.” But it’s difficult to put all the blame on doctors across the county who apparently were in fear of losing their medical license if they didn’t follow the CDC’s guidance. Clearly something or someone made them fearful enough to go against their medical training and harm their patients.

America’s overdose crisis prompted the stricter prescribing guidelines in 2016, and states in which opioid overdoses were epidemic passed laws to further restrict opioid distribution. This knee-jerk reaction, after these same states welcomed a flood of opioids from Big Pharma for years, had an unfortunate outcome for those who did use opioids responsibly to treat chronic pain conditions in which no other medications were effective.

My mother had intractable cancer pain in the last several months of her life. The CDC guidelines were not supposed to be implemented for those with cancer. But my mother’s doctor didn’t believer the cancer had returned and that she was dying. She believed my mother had become dependent upon the drugs and started limiting her prescription until she finally let my mother’s opioid prescription run out while the doctor was on vacation. My mother suffered mightily because of the doctor’s misinterpretation and fear of the CDC guidelines.

The 2022 guidelines make some improvements, according to pain specialists interviewed by NPR. There is no specific limits on the dose and duration of an opioid prescription. Clinicians will be encouraged to use their own judgment in deciding what is a safe and effective dose for each patient. And the CDC will stress more clearly that the guidelines are not “intended to be applied as inflexible standards of care” or as “law, regulation or policy that dictates clinical practice.”

While the new guidelines still discourage opioids as a first-line therapy for common acute pain conditions and for chronic pain conditions, it does acknowledge that opioids can play a role in chronic pain treatment, especially if other approaches have been tried.

If you or a loved one is running into issues of doctors not willing to manage your pain properly, keep pushing. Find another care provider. No one should have to die in agony because of bureaucratic guidelines. As NPR points out, the 2016 prescribing guidelines didn’t have the intended effect of reducing opioid overdoses. All of that suffering, all for nothing.

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Reflections on death being more about the journey than the destination

Photo by Greg Rakozy on Unsplash

I recently had the privilege of writing a blog post for The Conversation Project. My father died 10 years ago and in May, I will be marking seven years since my mother’s death. I’ve had a lot of time to think about end of life issues in the years since their passing and I’ve shared my perspectives here on The Memories Project blog and in my book, The Reluctant Caregiver.

In my post for The Conversation Project, A Good Death Is More about the Journey than the Destination, I discuss my family’s reluctance to talk about death and end of life issues, and how that impacted their end of life journeys, albeit in very different ways. My father’s death impacted how I cared for my mother, when just several months later, she was diagnosed with cancer.

Neither of my parents experienced the kind of death that I would want for myself, and that is why it has become such an important advocacy issue to me. Please talk to your loved ones, discuss your end-of-life wishes and document it all so that you can have some peace of mind when that phase of life is reached. What I wish for everyone is that you can find the time to simply be with your loved ones who are nearing the end of life, and not overly preoccupied with medical care duties. Just like at the beginning of life, it’s important we have those bonding moments at the end of life as well.

Visit The Conversation Project for tips and guides on how to start these important conversations with your own family.

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Pandemic sparks discussion about end-of-life care options

Over a half-million deaths later, Americans may finally be ready to have more frank discussions about death. It is long overdue, and it pains me that it took a deadly pandemic to raise awareness, but perhaps it can be an important legacy of those who we’ve lost over the last year.

I’ve long championed the need to have “the talk” with elder loved ones, and how my parents’ refusal to discuss their end-of-life wishes created unintended but very real consequences. You can read more about my challenges in my collection of personal essays, The Reluctant Caregiver.

The pandemic showed us what many of us don’t want for our deaths: to be alone with no loved ones present, to be hooked up to machines, to die in a hospital instead of at home, to not be given a proper funeral or farewell ceremony. Hopefully we will take time to reflect upon these tragic, lonely deaths and take action now to better articulate what we would like the final phase of our life to look like.

Some may want to consider a death doula. Practically speaking, death doulas are helpers in all aspects of end-of-life care, from the bodily aspects of the dying process to spiritual concerns. They can assist with logistical issues, such as whether a client would prefer to die at home or in a hospice facility, and help coordinate burial and funeral plans. Doulas can serve as a comforting presence for both the dying and their grieving family. While it may seem awkward to bring in a stranger to what is considered a private family affair, having a compassionate, but clear-eyed presence can be a great benefit in an emotionally-charged setting. To learn more about this option, the International End of Life Doula Association offers a Doula Directory.

If you have not done so already, I hope you will take this time to think about how you’d like your end-of-life care to look and document those wishes. Encourage your loved ones to do the same. The coronavirus pandemic denied many the opportunity for a “good” death but by being more open in discussing a previously taboo subject, we can hopefully move towards a better end-of-life experience for all.

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Challenges of dying at home, revisited

This week, NPR aired Patients Want To Die At Home, But Home Hospice Care Can Be Tough On Families, the national version of a story that first appeared last year on Nashville’s NPR affiliate. I was interviewed for this series, and shared my personal challenges in tending to my dying mother at home.

This is such an important conversation for the nation to have and it is a cause near and dear to my heart. As I state in the story, I am not anti-hospice by any means. My father died in a facility and that was a horrible death. But caring for my mother who died at home had its own unique challenges. Both experiences scarred me for life, leaving me with regrets and with a mission to help other families avoid the mistakes my family made.

I encourage everyone to read and/or listen to this series and think about your own situation. Family caregivers need to be clear-eyed about the demands they may face in caring for a loved on at home at the end of life. It can be the most tender of bonding moments, a final act of love and sacrifice for a beloved family member. Knowing the pitfalls and identifying potential gaps in care ahead of time can help you from becoming overwhelmed and burned out.

Finally, for those who did not have a good experience with home hospice care, know that you are not alone and it’s not your fault. Forgive yourself for anything you may be blaming yourself for (I’m still working on this part.) Your loved one would want you to let go and move on, free of guilt.

 

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More Americans are dying at home, but family caregivers still lack support

holding hands

Image courtesy of Pixabay.

The New York Times published an article this week that touched on a subject close to my heart. The article explores the impact of new data published this week in the New England Journal of Medicine that found more Americans are dying at home than in hospitals.

On the face of it, this sounds like good news. In poll after poll, the majority of people say they would prefer to die at home rather than in a hospital or nursing home. The tide now appears to be turning, and perhaps returning to a culture which embraces providing end-of-life care at home.

But the major challenge, which I’m grateful to reporter Gina Kolata for highlighting in her report, is the following: “Many terminally ill patients wind up in the care of family members who may be wholly unprepared for the task.”

This is something I’ve written about extensively, based upon my own family caregiving experience. My personal essay, Why Dying at Home is Not All It’s Cracked Up to Be, ruffled some feathers at the time. But my point wasn’t to be anti-home hospice. I think home hospice can be a wonderful service. The problem is that there are not enough home hospice service providers, especially in rural areas of this country. As the New York Times article discusses, this leaves family caregivers carrying the heavy burden of providing medical care for a dying loved one, while dealing with the financial cost and emotional toll of that experience. Most family caregivers are woefully unprepared.

“We have put a tremendous burden on families in the type of care they have to provide and the type they have to pay for,” said Dr. Sean Morrison, chair of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York.

With my parents, I experienced the worst of both kinds of deaths. My father died in a skilled nursing facility without any family members with him, and my mother died at home, with myself, the only child, providing her end-of-life care but lacking support from limited home health care services.

The New York Times article also discusses another downside of dying at home: pain management. My mother’s pain was not managed as well as it could’ve been in an institutional setting, and that will haunt me for the rest of my life. No one should have to suffer needlessly at the end of life.

If you want to learn more, I was interviewed recently on the challenges of dying at home by journalist Blake Farmer at WPLN, Nashville Public Radio.

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A towering reminder

tree collage

This week marked the fourth anniversary of my mother’s death. I’ve hit that mark where it’s hard for me to believe that it was only four years ago. It seems like a lifetime ago.

But the towering water oak tree in my front yard serves as a sturdy reminder. It has been four years ago since the last time I had it trimmed. The reason why I remember the date of such a mundane task is because it was the day that I realized Mom was dying and that I needed to be with her. I remember the chaos of that day, with Mom getting admitted to the ER again for uncontrollable pain. I was trying to field phone calls with the roaring machinery going full-throttle outside. There was an issue with a car parked on the street and I was being asked to assist. I remember wanting to scream, “I don’t care about the damn car. My mother is dying!”

I recently had the tree pruned again, and the foreman proposed May 21, the day of my mother’s death. Somehow I thought it was appropriate. The tree may very well outlive me. It grows, it sheds its leaves in the fall, occasionally branches drop, and then it is tended to and left naked with knots. It’s akin to how time alters the grief process. One is left raw with some hardened spots, but life continues to grow.

You may never be the same after the death of a parent, but life does go on.

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“Into the Night: Portraits of Life and Death” a fascinating documentary

Leave it to me to find the heartbreaking, gut-wrenching yet powerful documentaries. While films about dying are always an emotional experience for me, I also find them thought-provoking, which is why I keep watching them and sharing with others.

The latest film I watched is titled, “Into the Night: Portraits of Life and Death.” It aired on PBS earlier this year, but I caught it on Netflix. What I liked most about the film was the diverse range of subjects who were interviewed about their perspectives on death. From people of faith to scientists to a former member of an Islamic extremist group, those interviewed were candid about their thoughts on the meaning of life, death and the afterlife.

I loved the imagery captured in the film, such as a son finding an acorn in the pants pocket of his recently deceased father, or a favorite family photograph of a parent and child on the shore of the beach. There was also an interesting discussion of near-death experiences.

One of my favorite death positive advocates, Caitlin Doughty, is also interviewed for the film. A traumatic brush with death as a young child greatly influenced her life.

The most moving segments were with those who were actively dying. Anyone who has spent time with a dying person knows they often offer an insightful take on their imminent demise. Some people fight death until the very end, but others make their peace with death in order to better appreciate the time they have left.

The overall message I took away from the film is that each of our lives are unique stories, and all stories must come to an end eventually.

Watching such a film made me reflect upon my own views of death, as well as those of my parents. My father, a staunch Catholic, had an intense fear of death. Did his dementia offset that fear, or intensify it? There is no way for me to know. My mother, on the other hand, had a more positive end of life view. She thought we “go to a good place, and a right place,” based upon whatever our views are of the afterlife.

For me, I’m more afraid of terminal disease and the dying process than death itself. I dread the idea of pain, misery and loss of self-control. I also dread the loss of mental faculties, but know that is a distinct possibility, as Alzheimer’s is all over my family tree. I admire those that make peace with death, as I think it is the best way to go. At some point, the fight to live is over, but I don’t see that as giving up. I see that as focusing remaining energy on the life you have left.

If you’ve seen the documentary, I’d love to hear your thoughts.

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‘Driving Miss Norma’ teaches valuable lessons on aging, caregiving, dying

I haven’t been shy about my professed loved and admiration for “Miss Norma” Bauerschmidt, who at 90, became an internet sensation when, instead of undergoing grueling treatment for uterine cancer while dealing with the recent death of her husband, she told her doctor, “I’m hitting the road.”

Driving Miss Norma: One Family’s Journey Saying “Yes” to Living, a book about the final, amazing year of Norma’s life, is now available, and I highly recommend it.

Norma joined her son and daughter-in-law in a motor home for an epic trip around the U.S., where she was welcomed like a celebrity everywhere she stopped. While Norma’s symptoms were managed quite well on the road, her cancer progressed and she died on September 30, 2016.

Her story has touched millions around the world, and I couldn’t be happier about that.

Norma’s story touches upon many topics that are near and dear to my heart. First, the “treatment without question” mentality that pervades the American health care system got turned on its head here. The doctor was taken aback by Norma’s reaction at first, but admitted that his own treatment recommendation would have set up Norma on a long road of recovery that she may not have survived. Instead of spending months in a skilled nursing facility recovering from major surgery and being sick from chemotherapy, Norma chose quality over quantity for the remainder of her life.

The highs and lows of caregiving are poignantly and honestly discussed in this book. Norma’s son and daughter-in-law don’t shy away from the challenges that family caregiving poses, which are only complicated when mixed with an unpredictable life on the road. Norma’s son and daughter-in-law weren’t experienced caregivers before taking on Norma, and their “nomadic by choice” lifestyle had to be adapted to Norma’s abilities and health challenges. Ultimately it was an experience that they wouldn’t trade for all the world, but I appreciate their openness in discussing their caregiving experience.

What was most surprising to me was how, according to her son, Norma was not known as the “wild gal” that we saw on Facebook who would make funny faces for the camera or who took delight in quirky tourist spots. Norma, a quiet, stable presence in the family, had been content to live in her husband’s shadow. But once on the road, a new side of Norma emerged. This may be the most important lesson of all in the book. It is never too late to find oneself.

By late summer, it became apparent that Norma’s trip through this life would be coming to a close soon. Being on the road presented some unique challenges, but Norma passed on as comfortably as is possible, surrounded by love and fulfilled in a year’s worth of joyous sights and experiences. For everyone seeking that elusive “good death,” I think after reading this book you will conclude that Norma had a good one.

Obviously, not all of us have adult children who could accommodate such an epic life’s end journey. What we can take from the book is that when faced with what could have been an overwhelmingly depressing moment in her life, coping with the death of her husband and a cancer diagnosis, Norma chose to embrace optimism. Norma chose adventure, to let go of any old grievances and open her heart to new people and experiences. One of the catchphrases for Norma’s journey is, “Say yes to living.”

That’s a lesson we could all take to heart.

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Getting creative with dying

blue-balloon-1193182-1920x1440

John Evans/Freeimages

Thanks to those who participated in my caregiver survey. The OpenIDEO end of life challenge is going through its final review, and top ideas will be announced in the coming week. Regardless of the outcome, the experience has been educational and inspirational.

I spend quite a bit of time on this blog sharing my frustrations with the health care system, but the good news is there are a lot of compassionate, smart people out there who are working on solutions. They want to improve the experience of those nearing the end of life, the death process itself and the caregiver’s well-being.

The ideas generated in this challenge were truly awe-inspiring. Some of my favorite ideas included musicians writing and playing songs for those in hospice inspired by the dying person’s life. I loved this idea because not only would it offer comfort to the dying, but also would be a memento the family could keep forever.

I also was inspired by the “Leave a Wish” idea, which would allow you to leave any message you want for family members after you have died. It could be something like hiking to a favorite spot to mark a holiday, or making sure your loved ones fulfill their own goals, like writing a book or running a marathon. I loved the way this idea could allow you to connect with your loved ones even after you are gone.

Other ideas included green burial options, documenting a loved one’s life stories and encouraging greater discussion of end-of-life wishes.

There were so many wonderful, innovative ideas that I can’t go into them all here but you can check out the full list on OpenIDEO.

It’s reassuring to know that there are good people out there who want to make dying not something painful and miserable, but a final phase of life in this world that can be meaningful and inspirational.

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My essay about dying at home posted on The Caregiver Space

I’ve been reading posts on The Caregiver Space for quite some time, but never had time to submit my own writing.

Now that I find myself in a post-caregiving phase of my life, I’m really trying to focus on writing a series of essays that have been stewing in my brain for awhile.

hospital bed

Last week, The Caregiver Space published my essay, “Why dying at home is not all it’s cracked up to be” and the reception has been quite positive. The post was published on The Caregiver Space Facebook page where it generated several hundred likes and many heartfelt comments.

The essay is not an attack on hospice care workers; I admire most of them and think they do a phenomenal job. Hospice care is truly a calling in my opinion, and one can see the benefit of the loving, compassionate care they provide.

My essay is a look at dying at home vs. dying in a facility from the family caregiver’s perspective. After my dad died in a skilled nursing facility, I was all for my mother dying at home. But the reality was a bit different. It was an emotionally brutal experience that I wouldn’t wish on my worst enemy. That’s not to say that her death would have necessarily been better in a hospital, it would have been difficult in a different way.

My main point of the essay is to bring awareness to family caregivers in rural areas. They may find that the local home hospice agency is understaffed and overworked, and cannot provide the around-the-clock care that is often touted by die-at-home advocates. People should be aware and prepare themselves for taking on more of the nursing duties of caregiving. If they feel they cannot do it themselves, they should seek out help from family, friends or professional caregivers.

If you have the time, please read the essay and let me know what you think. Also, please share with anyone who you think could benefit from the information.

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