Kaiser Health Network Examines how allowing Concurrent Care for Children has Impacted Pediatric Hospice Care
- The 2020 Affordable Care Act made it possible for California children enrolled in “Medicaid or the Children’s Health Insurance Program. . .to receive curative” care while enrolled in hospice. Though commercial insurers are not required to cover concurrent care, says an article by Kaiser Health Network (KHN), “many now do.” The article, “Shift in Child Hospice Care Is a Lifeline for Parents Seeking a Measure of Comfort and Hope,” offers insight in to the real-life impact on families, and the challenges faced by hospice providers.
- The concurrent care model, says the KHN article, “is widely credited with improving the quality of life for many terminally ill children, easing stress on the family and, in some cases, sustaining hope for a cure.” For families, like Adriana Pinedo and Hector Martinez, and their son, Aaron, the hospice experience is a “lifeline.” At the same time, says Adriana, “‘There’s no quality of life for him or for us.’”
- The article shares deeply about the realities of the life the family lives. Adriana recognizes the terrible realities of their world when Aaron’s future is either to die or to have someone change his diapers when he is forty. Either outcome, she says, is “‘going to suck.’” Aaron has “rare congenital defects” and neurological and metabolic illness.
- Dr. Glen Komatsu is medical director of California’s Torrance-based TrinityKids Care. Aaron is one of 70 children the program serves in Los Angeles and Orange counties. The program, in addition to sending nurses, social workers, and chaplains into the homes, “also offers art and science projects, exercise classes, movies, and music.” With the concurrent care offered to the children and families, the children typically live longer than other hospice patients. But like all hospice patients, children must be recertified each six months.
- It is often difficult to get concurrent care for these terminally ill children, the article says, because “most hospices care primarily for adults and are reluctant to take kids.” Some hospices say that they do not have the ability or capacity to treat children, that their staff is not trained to offer the care, or that they just can’t do it.
- Finances are also important. The reimbursement rates are the same for adults and children. But children “often require more intensive and innovative care, so the per diem doesn’t stretch as far.” The concurrent model has helped with this, since many of the medications and service expenses can go to the family’s primary insurance, while the hospice remains responsible for pain management and comfort care.
- The number of children who need hospice, the article notes, is relatively small. In “an industry craving growth, especially one in which private equity investors are active and seeking a big payday,” providing these services is not as lucrative. Hospice Analytics in Colorado Springs, Colorado, conducted an analysis of 2020 state data and found that though California has 1,336 hospices, only 21 report that they have a “specialized pediatric hospice program, and 59 hospices say they served at least one patient under 21.
- There is also another challenge for hospices that serve children and families. Entering hospice means acceptance of death. For some children and families, this means that admission to hospice may come later than it could have — or never comes at all.
- Aaron’s doctors admit that Aaron was not expected to live more than five days, which is when he entered hospice care. Aaron is now 17 months. His doctors say he is growing well and could live for years.
- For some, the arrangement of hospice creates a painful dilemma. Adriana and Hector are divided, because they want their son to live, and they know the futility of medical realities that tell them that there is “no future worth hoping for.” Despite this, Adriana says she is “‘infinitely grateful’” for hospice. She also says, “We could lose a life, but if he continues to live this way, we’ll lose three…There’s no quality of life for him or for us.” (Kaiser Health Foundation, 9/22)
Can Death Conversations be Fun?
An article in KevinMd is titled “Making death conversations fun!” Author Altea Halchuck, a patient advocate, shares some of the tools that are designed to encourage end-of-life conversations in a lighter way. An AARP survey, says the article, found that “‘54 percent had not completed a medical power of attorney or advance directive.’” Some say they just haven’t gotten to it, while others say they don’t know how, and some admit that they just don’t want to talk about it. Halchuck identifies “games” that help people have these “conversations in a painless and fun way.”
“Talk of a Lifetime” is a game created by the National Funeral Directors Association. The game consists of 50 cards with questions to help people learn more about those they love. “Players share stories about life, the things that matter most, and how they want to be remembered.”
Another conversation starter is “Go Wish,” a group of cards to help people talk about what would count most in their life if they learned they had a serious illness. Another tool, “The Death Deck,” is actually a party game that encourages conversations about death—not the usual party banter. This tool allows people to share openly, and allows others to guess about answers. The game, says Halchuck, encourages “lively conversations and life-changing dialogue.”
“Heart to Heart Cards” are designed to make it easier to understand the wishes of “a family member, a caregiver, or a health provider” about EOL wishes. These cards are in English and Chinese. The also help healthy people share wishes and hopes with others.
“Heart2Hearts: Advance Cre Planning” offers 52 suggestions to start conversations about advance care planning. The conversations are meaningful, says Hulchuck, and allow people to offer a “priceless gift” of peace of mind to those they care about.
“Elephant in the Room” consists of 96 cards and 4 categories for discussion. Each person gets to confirm various preferences and share with family members and health care team members. The conversations in this tool are designed to be personal rather than medical.
“Death Conversation Game” leads to “open thinking and conversations on death.” This works with family and friends, students, clients, colleagues or others. The depth of the conversations depends on those who share.
“GraveTalk” comes from the Church of England. It has 50 cards for use in small groups. The questions encourage discussion around end of life. (KevinMD, 9/21)
Dr. Christopher Kerr is the chief medical officer of Hospice and Palliative Care in Buffalo, NY. Kerr shares about the growing awareness he had, from spending time with hospice patients, that “end-of-life dreams and visitations” are frequent, and that they bring comfort. Kerr is author of a book, “death is but a dream,” where he shares about these stories. “While the clinical community may have remained skeptical” about his findings, the article notes, there was quite a grassroots movement of interest when the experiences of his patients began to be shared via Tedx, in Washington Post, in New York Times, via Netflix and via PBS documentaries. Medicine, Kerr says, requires an “organic basis” for everything, but this is not necessarily true in the human experience. Kerr has learned from people nearing life’s end, and often via their dreams, about the power of recalling of relationships, and the strong ties of love –- regardless of time and distance. These give assurance that you are not alone. Kerr is now studying “how these experiences change a person’s view of their life and their belief systems.” The experiences lessen fear and anxiety. An article in Batavia, NY’s The Daily News, shares about Kerr just before he was to make a presentation in Batavia. Within the article, there is a video interview/sharing with Kerr. (The Daily News, 9/20)
End of Life University’s podcast “Practical Tools for Home Caregivers,” is presented by Barbara Karnes. Karnes has been a “hospice nurse, thought leader, and expert on end-of-life care.” In this podcast, she discusses caregiver tools related to the needs of the patient they are caring for, and the caregiver’s need as well. Karnes will be offering presentations on hospice each month for End of Life University. (End of Life University, 9/19)
The HAP Foundation has launched operations as “an independent non-profit hospice and palliative care research and advocacy organization.” The Foundation hopes to “identify and address gaps in the health care continuum to help improve the quality of life for the critically and mentally ill.” Serving as an “‘education and training center,’” community health leaders will go into communities and talk with residents about “critical illnesses and care options.” More details about the work, operations and eighty-five-million-dollar budget of the Illinois’ organization is online at the link below. (Illinois News, 9/20)
END OF LIFE NOTES
“Walking Each Other Home: Cultural Practices at End of Life” is an exhibit at the Arizona State Museum on the University of Arizona campus. The exhibit, six-years in the making, includes exhibitions on how communities deal with death, and the cultural practices of death. A video, online at the link below, features Leia Maahs, the Executive Director of the Southwest Folkslife Alliance, and the exhibit curator. Co-curators also share on the video. A public interactive day is planned on November 19. (Tucson.com, 9/20)
End Well has announced that they will soon begin offering podcasts, and the first podcast is scheduled for October 11. The speakers and topic are described online at the link below. At this link, readers can also subscribe to the End Well email list. (End Well)
“Why don’t more people of color receive end-of-life care?” asks an article in Philadelphia’s The Inquirer. Underserved populations do not often use medical care in dying. Furthermore, “they also are less likely to utilize hospice and other palliative care options.” One example, says the article, is that no “Black, Hispanic, Native Hawaiian, Pacific Islander, or Native American state resident has used the law to gently end their suffering [Medical Aid in Dying].” A national survey revealed that 62-75% of Black, Hispanic/Latino voters, and all other ethnic groups, would want access to medical aid in dying if they were terminally ill. The same was true of 67% of white voters. The article hypothesizes that perhaps people of color “may tend to prefer aggressive treatments, and may not be offered palliative options, due to institutional racism, cultural and language barriers, lack of access, and economic and insurance hurdles.” The article calls on health-care providers to initiate discussions about end-of-life care wishes, and work for equal access to all for their wishes to be honored. (The Inquirer, 9/22)
A press release from Alzheimer’s Disease International says, “Up to 85% of people with dementia may not receive post-diagnosis care.” Receiving care after diagnosis is a human right, and these patients, and those who care for them, deserve and need care and support. The release is online at the link below, and is a global call for action. (Alzheimer’s Disease International)
Husch Blackwell will offer a webinar titled “Form 990 Basics for Nonprofits.” The webinar will be on October 4 from noon until one, CT. Details are online at the link below, as is a link to registration. (Husch Blackwell)
Geripal shares a YouTube video presentation titled “Avoiding the Uncanny Valley in Serious Illness Communications,” by Josh Briscoe, an assistant professor of medicine and psychiatry at Duke, as well as a palliative care physician at the Durham VA Medical Center. The “uncanny valley” occurs when we are engaged in conversation but feel more like we are a robot. A summary of the presentation, a full transcript, and a link to the YouTube video are all at the link below. (Geripal, 9/22)
An article in Washington Post spotlights the serious challenges home care agencies are facing in their inability to fill staff positions. Competition for workers is stiff, and a lot of jobs are available that pay better and do not require as much physical stamina. Home care industry groups, says the article, “have urged Congress to consider special temporary visas.” The article gives examples of the difficulties that families are facing and the serious need to address this issue. (Washington Post, 9/25)
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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.