DEALING WITH THE EMOTIONAL AND PHYSICAL PAIN OF GRIEF
Losing a person who’s close to you can be hard enough, but the grieving often find that this pain is compounded by a lack of awareness or support that have far-reaching impacts. These pains may include effects on emotional and physical health. From both academic and popular sources, the message can be summed up in the headline from Next Avenue: “We Must Do Better for the Grief-Stricken.”
In the article, Next Avenue writer Kevyn Burger interviews Dr. Toni Miles, a professor of epidemiology at the University of Georgia and director of its Institute of Gerontology. Miles, who holds a Ph.D. in public health, has studied the impact of bereavement for more than a decade and frames “bereavement care as a public health issue that can buffer the negative impact of loss.”
The death of a parent, spouse, sibling, or child raises your own risk of dying, Miles says. “I’m not talking about the anecdotal story of an older couple that dies within twenty-four hours of each other. I’m using a large data set of people fifty and older, studying people who report they’ve lost someone close in the last twenty-four months. At a population level, those people are two times more likely to die over the course of a lifetime than someone without the loss.” This is particularly true in the first two years after loss.
“Bereavement is this feeling of profound loss,” Miles says. “It’s having a giant hole in your soul. You are living with this feeling that you didn’t have before this event. Your physiology is perturbed. People gain or lose weight, their sleep is disturbed. They take up smoking again. Grief sends people to the doctor and the hospital.”
The article argues for attending to “people around the deathbed, not just the person in it.” People “need permission to grieve and help processing what they’re experiencing, from professionals or from people who care.” As a society, we need to interject bereavement care into how we function in a meaningful way.
Miles’ concerns are reflected outside of academic research. The New York Times recently published “What to Say (and What Not to Say) to Someone Who’s Grieving.” Author David Pogue crowdsourced some of the worst responses they’ve encountered while grieving. The anecdote included being blamed for the loss of a stillborn daughter, being told that because they were young, they could move on after the loss of a husband without too much worry, or having the loss of a child compared to that of losing a dog.
Pogue says that saying the right thing doesn’t come naturally, and we live in a society that generally avoids the topic all together. With that in mind, he offers a few rules to help guide those conversations.
First, Pogue says, “It’s not about you.” Too many people try to turn the grief back around to reflect themselves. For instance, sharing stories of your own grief can not only shift the focus on the conversation but put the grieving person in the role of having to comfort you.
“There is no bright side,” he says, speaking to those who might be inclined to lighten the mood, soothe, or simply feel that it’s a kind gesture. “When you’ve lost someone you love, you’re in a dark, raw place. Nothing anyone can say is going to cheer you up, especially observations that begin with the words, ‘At least.’” He also cautions on offering personal religious beliefs. “If the recipient doesn’t share your beliefs, you’re likely to add offense to the insensitivity.”
Finally, he says, “Let them feel.” Some people have a tendency to want a grieving person to “be strong” or “stay strong,” but this doesn’t allow for a range of emotions that can come from loss. This might mean crying for days on end, or even laughing at times when the situation might suggest that you should appear somber. The message should be, Pogue writes, “Whatever you are feeling, and whenever you are feeling it, it’s O.K.” (Next Avenue, 2/18, www.nextavenue.org/bereavement-researcher-grief-stricken; New York Times, 2/14, www.nytimes.com/2019/02/14/smarter-living/what-to-say-and-what-not-to-say-to-someone-whos-grieving.html)
CREATING A PATH TOWARDS A GOOD DEATH
As Kathy Butler turns 70, the “peculiar problems of modern death — often overly medicalized and unnecessarily prolonged — are no longer abstractions.” After witnessing the misery that resulted from a string of issues and care decisions following her father’s stroke in his 70s, she hopes to have “a better death than many of those I’ve seen recently.”
This quest is the backbone on her article, “How to prepare yourself for a good end of life,” published in the San Francisco Chronicle. In the U.S., she says, many people just aren’t dying the way they envision. A 2017 Kaiser Foundation study found that 70% of Americans hope to die at home, but half die in nursing home and hospitals. For one in ten, she writes, that will mean being “cruelly shuttled from one to the other in their final days.”
“This state of affairs has many causes,” she says. “Among them fear, a culture-wide denial of death, ignorance of medicine’s limits, and a language barrier between medical staff and ordinary people.”
Often, expectations and reality create difficult relationships between patients and caregivers. An HMO nurse has told her that terminally ill patients often feel abandoned, while oncologists say some patients will fire them if they’re truthful.
It’s a bleak picture of care, and it’s a story that Butler doesn’t want to be her own. After interviewing hundreds of people on both good deaths and difficult experiences, she offers a few tips she’s gleaned on “how to get the best from our imperfect health care system.”
“Have a vision,” she says. What are the circumstances that it would take for you to die in peace, and how can you get there? This may involve forgiving certain people, thanking others, and rituals that might comfort you at the end of life. In this vision, she recommends trying to face death while still enjoying life and appointing “someone with people skills and a backbone to speak for you if you can no longer speak for yourself.”
Butler also advises staying in charge when it comes to your care. “If your doctor isn’t curious about what matters to you or won’t tell you what’s going on in plain English, fire that doctor,” she says. Caregivers should have conversations about what you want to accomplish and help facilitate a trajectory that fits what you value in life.
Doing this also means knowing the trajectory of your illness. She recommends asking your doctor to “draw a sketch tracking how you might feel and function during your illness and its treatments.” This kind of visual aid can offer a greater depth of information than simply asking how much time you have left.
This will also help you know how and when to shift from curative solutions to comfort care. “Don’t be afraid to explore hospice sooner rather than later,” she says. “It won’t make you die sooner,” and it provides “home visits from nurses and other professionals, but your friends, relatives and hired aides will be the ones who empty bedpans and provide hands-on care.”
Ultimately, the search for a “good death” has more to do with life. How we love, learn, and create emotional bonds is at the core of Butler’s guide to finding resolution. “Hospice nurses often list five emotional tasks for the end of life,” she says. They are: thank you, I love you, please forgive me, I forgive you, and goodbye. “Even a small, last-minute exchanges” can be powerful and influence an “emotional legacy.”
“Over the years, I’ve learned one thing,” Butler concludes. “Those who contemplate their aging, vulnerability and mortality often live better lives and experience better deaths than those who don’t. They enroll in hospice earlier, and often feel and function better — and sometimes even live longer — than those who pursue maximum treatment. We influence our lives, but we don’t control them, and the same goes for how they end.” (San Francisco Chronicle, 2/17, www.sfchronicle.com/opinion/openforum/article/How-to-prepare-yourself-for-the-good-end-of-life-13622599.php)
HOSPICE AND END-OF-LIFE NOTES
* “Hospice Care & Acupuncture” published in Acupuncture Today discusses the work of the National Association of Hospice and Palliative Care Acupuncturists (NAHPCA). NAHPCA was founded by registered nurse and acupuncturist Torii Black in 2013. NAHPCA works “to demystify hospice and to bring together acupuncturists, hospice organizations, and businesses to help patients and their families with end of life care,” she says. The article explains the role of hospice care before pivoting back to NAHPCA’s mission and history. Their main objectives include: 1) To help people die peacefully, utilizing acupuncture treatments. 2) To provide a directory for families and patients to find practitioners. 3) To advocate for acupuncture coverage through Medicare, which covers more than 75% of hospice patients. (Acupuncture Today, 2/2019, www.acupuncturetoday.com/digital/index.php?i=733&a_id=33612&pn=22&r=t&Page=22)
* “When hospice care goes wrong, where can you turn?” asks the Los Angeles Times. Steve Lopez relates the experience of losing his mother after a “bungled transfer from hospital to residential hospice” and the need for the hospice agency to be held accountable for the failings that even they acknowledged. “I briefly considered suing,” he writes, “but a drawn-out court battle didn’t seem like much of a solution.” Lopez walks through other alternatives, guided by Charlene Harrington, a professor at the UC San Francisco nursing school and former official with the state Department of Public Health. She has long been a critic of the lack of regulatory oversight and usefulness for consumers. Lopez made a complaint through the Department of Public Health Licensing and Certifications Program (“I’ll let you know how that goes, but it could take a while,” he writes). Mike Connors of California Advocates for Nursing Home Reform told him of state regulators, “They don’t do a whole hell of a lot.” Of 2016-17 complaints like the one he filed, the average investigation time was 358 days, and he finds evidence of only one penalty imposed against a hospice agency in that year. Hospice agencies are “way down on the list of priorities,” and “roughly 80% of hospice agencies, records show, are not reviewed and recertified by the state.” (Los Angeles Times, 2/16, www.latimes.com/local/california/la-me-lopez-hospice-complaint-20190216-story.html)
- * The Journal of Hospice & Palliative Nursing published “Effectiveness of the Teach-Back Method for Improving Caregivers’ Confidence in Caring for Hospice Patients and Decreasing Hospitalizations.” The authors explain, “Health care professionals use teach-back to foster adherence to treatment recommendations and to improve safety and quality of care.” The study, conducted in one division of a home care agency, found that “the teach-back group had zero hospitalizations compared with 2 for the non–teach-back group (0% and 1.97%, respectively), and patient-caregiver ‘confidence’ increased from 58% to 81%, pre to post intervention.” Researchers conclude, “Teach-back is a cost-effective teaching methodology that can be implemented by any discipline to improve patient-provider communication and patient outcomes.” (Journal of Hospice & Palliative Nursing, 2/2019, https://journals.lww.com/jhpn/Abstract/2019/02000/Effectiveness_of_the_Teach_Back_Method_for.11.aspx)
* The End-of-Life University Podcast released Episode 182: “When you Die…You Will Not Be Scared to Die,” a conversation with Lindsay Tunkl. Tunkl is a conceptual artist and writer who explores subjects such as death, heartbreak, and the apocalypse. She’s speaks about her book When You Die You Will Not Be Scared To Die, and her workshop, “Parting Practice: Rituals for Endings and Failure.” The interview also includes discussion on her fear of death and how it has impacted her work, how to reframe death by writing lists, and how the ability to plan ahead can be a luxury, among other topics. (End-of-Life University, 2/18, https://us2.campaign-archive.com/?e=d0771da91c&u=3ca907a9f101567d342c3f4ef&id=eebe1d5670)
PALLIATIVE CARE NOTES
* The Journal of Hospice & Palliative Nursing published “Nurse Comfort With Palliative and End-of-Life Communication: A Rural and Urban Comparison.” Researchers assessed this comparison with “the 28-item (including 2 ranked items) Comfort with Communication in Palliative and End-of-Life Care instrument.” The findings show that rural nurses tended to be older and more experienced. Urban nurses reported less comfort than rural nurses in “based on composite score analysis” and less comfort than rural nurses in talking with patients and families about “end-of-life decisions.” The researchers conclude, “Years of experience were significant for more comfort with end-of-life communication.” Looking forward, the researches suggest their “instrument could be used within academic settings to establish baseline awareness of comfort with palliative and end-of-life communication and in institutional settings to provide a continuing education bridge from prelicensure through licensure. Moreover, experienced nurses are integral in mentoring new graduates in initiating and sustaining difficult conversations.” (Journal of Hospice & Palliative Nursing, 2/2019, https://journals.lww.com/jhpn/Abstract/2019/02000/Nurse_Comfort_With_Palliative_and_End_of_Life.8.aspx)
- * The U.S. Government Accountability Office released the 43-page report, “Advance Care Planning: Selected States’ Efforts to Educate and Address Access Challenges.” The report includes a description of “(1) the challenges individuals and providers face completing and accessing the documents, and (2) selected states’ strategies for improving individuals’ and providers’ understanding of and access to advance care planning documents.” The GAO report came after it “reviewed documents and interviewed officials from national stakeholder organizations involved in advance care planning or aging issues, and conducted a literature review of relevant articles published from January 2012 to April 2018 in peer-reviewed and other publications. In addition, GAO interviewed officials from state agencies and stakeholder organizations in California, Idaho, Oregon, and West Virginia. GAO selected those four states because they were active in encouraging advance care planning and had registries for completed documents that were in different stages of development.” (GAO, 2/21, gao.gov/products/GAO-19-231)
* Carolyn Lefkowits, MD, gynecologic oncologist and palliative care doctor at the University of Colorado, spoke with OncLive, a sister publication of Oncology Nursing News, at the Society of Gynecologic Cancer (SGO) 2019 Annual Winter Meeting. Lefkowits discussed the role of palliative care and dispels “3 Palliative Care Myths.” The myths were that referral to palliative care means you’ll talk about dying and advanced-care planning; that palliative care takes away hope; and that oncologists should be able to do all the palliative care.” (Oncology Nursing News, 2/21, www.oncnursingnews.com/web-exclusives/expert-dispels-3-palliative-care-myths)
* An article at MyArkLaMiss.com says, “Representative Dan Douglas’ Death With Dignity Bill would allow doctors to prescribe lethal doses of medicine for you to end your life, if you prove to be clear of mind,” reports KARD-TV. The article describes a faith-based group with plans to kill the bill in committee. “Douglas has met the Hospice and Palliative Care Association,” they say, but “[the Association] does not have an official position on doctor-assisted suicide.” Representative Douglas, (R), is said to be seeking more feedback before running the bill. (MyArkLaMiss, 2/22, www.myarklamiss.com/news/local-news/arkansas-may-consider-allowing-doctors-to-prescribe-lethal-doses-of-medication-for-terminal-patients/1800929101)
* A new report from Centers for Medicare & Medicaid Services (CMS) actuaries suggests nearly a doubling in health spending in the U.S. as Baby Boomers age. The study expects costs to grow from $3.6 trillion in 2018 to $6 trillion by 2027. Health spending’s share of gross domestic product (GDP) is also expected to rise from 17.9% in 2017 to 19.4% by 2027, due to annual health spending growth outpacing annual GDP growth by 0.8%. Prescription drug costs are expected to increase 5.6% in this period. “In short, we expect … that health spending over the next decade to be driven by long-observed demographic and economic factors that are fundamental to the health sector in contrast to the last decade,” said lead author Andrea Sisko, PhD, an economist for the National Health Statistics Group in the Office of the Actuary, referring to the impact of the “Great Recession” and ACA implementation. (Medpage Today, 2/20, www.medpagetoday.com/practicemanagement/reimbursement/78137)
* “Nearly a quarter of rural hospitals are on the brink of closure,” Modern Healthcare reports. The article discusses a Navigant analysis of CMS data on 2,045 rural hospitals, which shows that twenty-one percent of rural hospitals are at risk for closing. “That equates to 430 hospitals across 43 states that employ about 150,000 people and generate about $21.2 billion in total patient revenue a year.” This is a particular concern not just for rural patients, but rural economies. “Hospitals are often the economic drivers of rural communities. Per capita income falls 4% and the unemployment rate rises 1.6 percentage points when a hospital closes.” The article discusses technology like telehealth to maintain certain services, but notes broadband internet access concerns and limitations of the current reimbursement model. (Modern Healthcare, 2/20, www.modernhealthcare.com/article/20190220/NEWS/190229999/nearly-a-quarter-of-rural-hospitals-are-on-the-brink-of-closure)
* Time Magazine asks, “Who Will Care for the Baby Boomers?” The article describes a growing crisis brought on by an aging population, strained resources, and gaps in coverage and savings. Unpaid caregivers in America, already thought to be at 43 million, is expected to spike as Baby Boomers age. Adding to this pressure is a shortage of paid caregivers, which despite being among the fastest growing occupations is a job “most Americans don’t want, leading to high turnover rates of 74% annually in nursing homes.” The article sounds the alarm at the lack of preparation, including Congress and the White House, who have “kicked the can down the road, effectively waiting for the issue to become a crisis.” Individual states like Washington are left trying to brace for “a dual catastrophe: the anticipated 2026 insolvency of the federal Medicare hospital trust fund, which funds much of Medicare spending, and their own state’s Medicaid bankruptcy.” Proposed measures would impose a small employee tax to create a fund to help those in the state pay for care. “The state estimates the bill will save it $37 million in 2025, the first year the fund is active, and nearly $4 billion by 2052.” (Time, 2/15, http://time.com/5529152/elderly-caregiving-baby-boomers-unpaid-caregivers-crisis)
HNN Editor’s Correction: Last week’s edition shared a note about Diane Rehm’s testimony in support of Maryland’s proposed assisted-death legislation. The note said that the proposed legislation requires a “prescription from a doctor, and at least one of those must be made with the individual alone with his or her doctor.” To clarify, please note that the proposed law requires a person to make at least three requests for a life-ending prescription from a doctor.
Hospice Analytics is the national sponsor of Hospice News Network for 2019. Hospice Analytics is an information-sharing research organization whose mission is to improve hospice utilization and access to quality end-of- life care. For additional information, please call Dr. Cordt Kassner, CEO, at 719-209- 1237 or see www.HospiceAnalytics.com.
Hospice News Network is published 45-46 times a year. Copyright, 2019. All rights reserved to HNN subscribers, who may distribute HNN, in whole or part, to provider members of the subscribers’ state organizations. If readers need further information, they should consult the original source or call their state association office. HNN exists to provide summaries of local, state and national news coverage of issues that are of interest to hospice leaders. HNN disclaims all liability for validity of the information. The information in HNN is compiled from numerous sources and people who access information from HNN should also research original sources. The information in HNN is not exhaustive and HNN makes no warranty as to the reliability, accuracy, timeliness, usefulness or completeness of the information. HNN does not and cannot research the communications and materials shared and is not responsible for the content. If any reader feels that the original source is not accurate, HNN welcomes letters to the editor that may be shared with HNN readers. The views and opinions expressed by HNN articles and notes are not intended to and do not necessarily reflect views and opinions of HNN, the editor, or contributors. Only subscribing state hospice organizations have rights to distribute HNN and all subscribers understand and agree to the terms stated here.