Physician Reflects on “The Trauma and Shock of a Terminal Diagnosis”

  • A post in a Psychology Today blog examines “the emotional trauma” of receiving a terminal diagnosis. Author Daniel Miller, MD, a hospice and palliative care doctor, says there is a “a sense of dread and despondency upon learning of and thus coming closer to the prescience of our death.” And that experience, Miller says, is merely “the first wave” of what will be ongoing efforts to come to terms with such a diagnosis.
  • Receiving a terminally ill diagnosis is a shock. People experience a “cognitive dissonance,” says Miller, where one part of the mind tries to carry on with life as usual, while another part of the brain “touches the sinew of oblivion, and then recoils.” Even the words “diagnosis” and “prognosis” are lacking in compassion and connection.
  • This shock “is the emotional trauma when we lose that which we hold dear to us; in this case, the dismemberment of our expectation to continue to be in this body, to be in this world. . .” This shock remains with terminally ill people for a while. It manifests as anger, “dread, severe anxiety bordering on or progressing to panic, and the thought of ‘anything but this’…” Often, there is denial, sometime tears, and sometimes depersonalization.
  • Various coping strategies may be adopted. Some people are able to find personal meaning and become more authentic. Some gain insight and get to know themselves better. Some move from being a victim “and instead embrace the possibility of creating a fulfilling and highly meaningful life despite the outward perspective of tragedy.”
  • Those who are able to cope well, says Miller, turn to partners, family and friends, and other so they can live with a sense of mindfulness and with less distress. (Psychology Today, 6/27, https://www.psychologytoday.com/us/blog/end-life-matters/202206/the-trauma-and-shock-terminal-diagnosis)

 

Seriously Ill Americans Need all Physcians to “Understand and Embrace the Benefits of Palliative Care”

  • “Mainstream medicine must embrace palliative care services” is written by John Mulder, a palliative and hospice medicine physician and medical director for palliative care at the University of Michigan Health-West. He is also director of palliative medicine for the Michigan State University College of Human Medicine, and chief medical consultant for hospice and palliative care at Holland Home. In addition to these professional roles, Mulder has also lived with a “few-months-to-live prognosis” that further deepened his valuing of palliative care. Even though he found a donor that enabled him to live longer, he understands being seriously and/or terminally ill.
  • In his article in STAT, Mulder shares that both medical students and resident physicians “get only a few hours of education on how to help these people [with serious illness] cope with suffering or plan for the ends of their lives.” Mulder makes a compelling argument of why this is not acceptable. He points to studies, cited within the article, that reveal that “40% of American adults cope with multiple chronic health conditions that cause unnecessary suffering, diminish their quality of life, and increase their risk of dying.” Further, “up to two-thirds of Medicare beneficiaries may be living with serious illness.”
  • From his own experiences, Mulder says, “I’ve learned that few people want to live longer if they can’t live better.” For patients to be supported when so ill, he says, more than medicine is called for. Patients need a team that reaches out with various aspects of support. And for this to happen, “every clinician should understand and embrace the benefits of palliative care.”
  • Mulder defines a serious illness as “a health conditions associated with a high risk of dying and either negatively impacts a person’s daily function or quality of life or strains their caregiver.” In the article, he shares examples of these patients, including himself. And he demonstrates the value of a palliative care team. Because he knows the value of palliative care as a physician and a patient, he says his goal “is to help all providers understand how it [palliative care] works and how it can support them in helping patients find peace and enjoy the time they have left, whether it’s weeks, months, or years.”
  • Mulder explores the goals of palliative medicine, and offers that “data and predictive analytics” will continue to make it easier to identify patients who can benefit from palliative care. He shares how technology will further palliative care by helping us better understand the needs of each patient. (STAT, 6/30, https://www.statnews.com/2022/06/30/make-palliative-care-part-of-mainstream-medicine/)

 

HOSPICE NOTES

“Welcome Home” of Chattanooga has opened as a respite home that provides housing to homeless people as they receive hospice care. Welcome Home also provides hospice care at another house. The three-bedroom facility supports patients regardless of their care decisions. (US News, 1/26, https://www.usnews.com/news/best-states/tennessee/articles/2022-06-26/chattanooga-homeless-hospice-center-opens-cancer-home; Milford Mirror, 6/26, https://www.milfordmirror.com/news/article/Chattanooga-homeless-hospice-center-opens-cancer-17266642.php)

“The Uncertain Future of Hospice Certificates of Need,” authored by Holly Vossel, says certificate of need (CON) laws “often exist in a state of flux.” With 14 states having some kind of CON for hospices, Vossel examines the potential future in these laws.  Traditions Health’s Freeman Smith says, “‘There’s a real push to get rid of the CON state. It was a process to control the cost 20 years ago, but right now the market place determines that.’” NHPCO’s Judi Lund Person, says the state’s culture often determines whether there is a CON law. Some states appreciate CON, says Person, because the massive growth in the number of hospices has created quality concerns. On the other hand, some see CON as limiting hospice choices for patients. The article is online at the link below. (Hospice News, 6/28, https://hospicenews.com/2022/06/28/the-uncertain-future-of-hospice-certificates-of-need)

Even though California currently has a moratorium on new hospice licenses, Sutter Coast Hospital has petitioned the state for a hospice license. Coastal Hospice is a subsidiary of Coastal Home Health and Hospice and already has an office, but the “Brookings-based nonprofit says it’s about two months away” from serving patients. Local elected officials are supportive of these plans and have sent a letter of support. In 2020, Coastal Hospice applied for a hospice license, but the application was rejected because it did not include home health. They submitted a new application in November 2021 but California Gov. Gavin Newsome signed the moratorium and audit on licensing and oversight. (Wild Rivers Outpost, 6/28, https://wildrivers.lostcoastoutpost.com/2022/jun/28/brookings-based-nonprofit-says-its-roughly-two-mon/)

A study reported in Journal of Palliative Medicine reports that Medicare beneficiaries who are served by home health agencies that also offer hospice are more likely to actually receive hospice care.  “This has implications for improving hospice access,” concludes the article, “through home health incentives and models of care.” (Journal of Palliative Medicine, 5/22, https://www.liebertpub.com/doi/10.1089/jpm.2021.0390)

 

END-OF-LIFE NOTES

The Funeral Service Foundation and the Collaborative of National Pediatric Care Coalitions worked together to create “When a Child Dies: Planning Acts of Love and Legacy.” The booklet is the outgrowth of a multi-year project that begun in 2018. “The booklet offers guidance and inspiration to help these families who experience the death of their child say goodbye in a way that is meaningful and important to their path forward.” In May, there was a webinar on ways to use the booklet. The first link below is to the article about the project. The second link is to the May Webinar, and the third link takes readers to a cite where copies of the free booklet may be ordered. (National Funeral Directors Association News, 55/27, https://nfda.org/news/in-the-news/nfda-news/id/6480/have-you-ordered-your-free-copies-of-when-a-child-dies; https://nfda.org/education/webinars-virtual-roundtables/free-recordings;

A study published in the Journal of Pain and Symptom Management focused on evaluating “the never-before-examined associations of cancer patients’ death-preparedness states by conjoint cognitive prognostic awareness and emotional preparedness for death with psychological distress, quality of life (QOL), and end-of-life care received.” The article, “Sufficient Death Preparedness Correlates to Better Mental Health, Quality of Life, and EOL Care,” says when patients have “conjoint cognitive and emotional preparedness for death” they experience reduced distress and therapy treatments, and increases use of hospice. (Journal of Pain and Symptom Management, 6/1, https://www.jpsmjournal.com/article/S0885-3924(22)00104-X/fulltext)

An article in The Denver Post explores the various types of burial practices that continue to emerge and be more fully utilized. Water cremation, body composting, and open-aire pyres are all being used in Colorado and elsewhere, and, says the article, the number of people making these choices is growing. The article shares stories of families that have chosen these methods, and explores the process and price of each one. (The Denver Post, 7/3, https://www.denverpost.com/2022/07/03/green-death-care-compost-cremation-water-colorado/)

“NM Latino Families Urged to Initiate End-of-Life Discussions” appears in Public News Service.  A partnership between the Hispanic Heritage Foundation, the National Hispanic Council on Aging, and Compassion & Choices focuses on getting “people talking about end-of-life planning, hospice, life support, medical power of attorney, and medical aid—in-dying.” New Mexico has nearly 48% of the population who identify as Hispanic or Latino. The American Hospital Association reports that Latinos are less likely to use hospice, but “may be more likely to need it.” (Public News Service,  7/1, https://www.publicnewsservice.org/2022-06-30/family-father-issues/nm-latino-families-urged-to-initiate-end-of-life-discussions/a7974)6-1

An article in Journal of Pain and Symptom Management reports on a study in Denmark focused on determining variances in end-of-life care based on the family system of the patient. The study found that “kinless older adults are at risk for a higher-intensity EOL experiences” such as more hospital visits, more times in intensive care, and more utilization of emergency departments. The researchers say these findings call for consideration of “alternative support options for the unpartnered, the role of children in facilitating more intensive care,” and other factors. (Journal of Pain and Symptom Management, 6/1, https://www.jpsmjournal.com/article/S0885-3924(22)00490-0/fulltext#relatedArticles)

Well and Good shares thoughts about regrets at end of life. Author and doula Maryanne O’Hara shares the regrets she hears most often as she works with dying persons. Most common, says O’Hara, are patients who realize the value of life may have been ignored. Enjoying life’s little pleasures, spending more time with family, and telling others about your love for them are often mentioned as regrets that people wished they had spent more time focused on. (Well and Good, 7/2, https://www.wellandgood.com/most-common-regrets-near-death/)

 

GRIEF AND ADVANCE CARE PLANNING NOTES

An article in The Conversation explores “How obituaries helped people grieve during the pandemic.” Obituaries, says the article, have become more a way to help people grieve. During COVID, says the article, obituaries became longer and more descriptive and sometimes share “intimate stories of those who have died.” (The Conversation, 6/26, https://theconversation.com/how-obituaries-helped-people-grieve-during-the-pandemic-184112)

Time features an article titled “How Grief Upsets Your Gut Health.” The article explores how stress can impact physical health and explores, specifically, gut health. Input from neuroscientists, psychiatrists, and studies is offered in the article. The article examines the role of probiotics, dietary changes, de-stressing techniques, and seeking support. (Time, 7/1, https://time.com/6193214/grief-gut-health )

OTHER NOTES

“Hospital chaplains steward spiritual healing for end-of-life patients and their families” appears in The San Diego Union-Tribune.  The article declares the importance of chaplains in the hospital, and also says, “their role isn’t widely understood even by the hospital’s staff.” Chaplains work to serve everyone, regardless of faith and beliefs. And, chaplains serve not only patients, but also family members and hospital staff. (The San Diego Union-Tribune, 6/26, https://www.sandiegouniontribune.com/news/religion/story/2022-06-26/hospital-chaplains-steward-spiritual-healing-for-end-of-life-patients-and-their-families

American Health Care Association shares the result of a survey of 759 nursing home providers to explore issues of staff shortages. The dire findings reveal an industry that is facing major struggles in staffing and fiscal issues. Key facts include that: 60% of nursing homes are experiencing an increase in problems with staffing; 87% of the surveyed nursing home report that they face “moderate or high staff shortages;” Almost all of those surveyed say they are asking staff to work more hours, and “61%% are limiting new admissions;” 90% of responders have offered salary increases and bonuses;” “73% of survey participants fear having to close because of lack of staff;” Participants say costs have increased by 41% in one year; and, About “60% of the providers say they are operating at fiscal loss, and over half say they can’t sustain this over more than one year.” (AHCA, June 2022, https://www.ahcancal.org/News-and-Communications/Fact-Sheets/FactSheets/SNF-Survey-June2022.pdf)

 

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Hospice Analytics is the national sponsor of Hospice News Network for 2022. 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.