Tag Archives: end of life care

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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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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A new caregiving podcast

I love to promote those helping to spread awareness of the triumphs and challenges of family caregiving.

A new podcast, engAGING Conversations, launched this month. Sheryl Smith, RN, BSN, M.Ed Certified Health Coach, has created this podcast to cover a wide variety of caregiving topics. I recently had a conversation with Sheryl, in which we discuss my book, The Reluctant Caregiver. The episode is scheduled to air March 20.

On Google Play (requires login)

On iTunes (requires free iTunes software)

engaging conversations

Smith has the experience of being a professional caregiver as a nurse and caring for her parents as they aged. Her insight is so valuable to family caregivers. Smith also hopes to carry forward the conversation about end-of-life planning, which is a topic near and dear to my heart.

The first three episodes are posted on Sheryl’s website, and you can subscribe to the podcast via your favorite provider.

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RIP Miss Norma

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Photo via Driving Miss Norma/Facebook

I’ve written before about how inspiring I found Miss Norma to be. At 90, after losing her husband and being diagnosed with stage IV uterine cancer in a short period of time, Norma decided to skip grueling cancer treatment and “hit the road.”

Norma joined her son, daughter-in-law, and dog and embarked on a year-long adventure of a lifetime. The journey was lovingly documented on the Driving Miss Norma Facebook page.

But all good things must come to an end. Norma Jean Bauerschmidt died Sept. 30, 2016. When asked how she wanted to be remembered, Norma said, “Wouldn’t it be nice if others could just spread joy in the world.”

Wouldn’t that be nice indeed.

Her bright, upbeat, and loving spirit will be missed, but I will forever be inspired by her choice to embrace quality of life and truly live the time she had left in this world. Norma in many ways reminded me of my own mother. I’ve included a couple of my favorite photos and posts of her below.

In memory of Norma, do something special for someone you love, or for a complete stranger. Spread the joy!

 

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A brief film with hopefully lasting impact

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Image: Netflix

If you have Netflix, you may have seen an ad for the 24-minute film Extremis. I often ignore whatever Netflix is promoting, because often it just doesn’t match up with my interests. But this short film addresses an issue near and dear to my heart: end-of-life care wishes.

Extremis follows Dr. Jessica Zitter, a palliative care specialist at  Highland Hospital in Oakland, California. She helps guide families through the toughest decision of all, when to transition from life-sustaining care that is often uncomfortable for the patient (breathing tubes, feeding tubes) and focus on comfort care, allowing a patient to die peacefully.

It is often the toughest decision a family will ever make.

Much like some people are more motivated to quit smoking after hearing the stories of lung cancer victims versus reading inspirational brochures, I hope that this film will serve as  a sobering wake-up call about how important is to make end-of-life wishes. The consequences of ignoring such advice is outlined in painful detail in the film.

At the same time, when no orders are in place, each family reserves the right to decide what care their loved one will receive, even if it goes against the doctor’s advice. I may not have agreed with all of the family’s decisions in this film, but I could tell they came from the heart.

Anyone who has been through an emergency medical issue with a loved one will relate to this film. Suddenly you are faced with making major life-and-death decisions under the worst of circumstances. It is overwhelming and emotional. There is despair and hope and guilt and more than anything, a cloud of uncertainty hanging over everything. It’s a moment you never want to experience but also one that you never forget.

If you have a chance, check it out and let me know what you think.

 

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Hospital visits for dementia patients often tied to insurance type

There is much talk here in the U.S. as the new health care exchanges that the Obama administration has developed to lower health insurance costs open on October 1st. But I found an article this week that has some surprising results in another part of the health insurance world that impacts dementia patients.

Presbyterian Hospital, the last place I saw Dad alive.

Presbyterian Hospital, the last place I saw Dad alive.

A study conducted by NYU researchers found that dementia patients with managed care insurance were sent to the hospital less often to treat end-of-life health issues that would not improve their quality of life. Managed care organizations receive a lump sum payment for each patient, so they have an incentive to keep costs low by not encouraging unnecessary medical care. However, those with traditional Medicare which pays a fee for each service rendered were sent to the hospital more often. The difference in hospitalizations by insurance type was significant: only 4 percent for those with managed care vs. 16 percent for those with Medicare.

Managed care incentives to keep costs low can backfire on patients, sometimes limiting coverage of services that are not medically necessary but would improve quality of life. But in this instance, the focus on the financial aspect of healthcare actually benefits advanced stage dementia patients. My father was in and out of hospitals the last year of his life because his inpatient stays were completely covered by Medicare. But they did not improve his quality of life; in fact the sudden change of environment may have left him more mentally confused. The elderly are also at high risk for serious, even deadly hospital-acquired infections every time they spend time in an inpatient facility.

It’s one of those rare examples where shrewd and calculating financial decisions actually translates to compassionate action.

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