A few tools that might help...
- CDC, WHO, and general COVID-19 information posted on NHPCO's public website - very helpful and regularly updated.
- Colorado COVID-19 information - helpful and regularly updated.
- Infographic - helpful and interesting.
- Projections - helpful and interesting.
- Johns Hopkins Infographic - helpful and interesting.
- New York Times: State-specific increases in deaths due to COVID-19.
- Ira Byock, MD - This Pandemic is Personal (a warm reflection from a friend and colleague).
- Arthur L. Caplan, PhD - Hope is Fine, but Reality is Best in End-of-Life Care (a pointient article).
- NHPCO Ethical Guidelines During COVID-19.
COVID-19 Ethical Framework Guide
Ethical Framework for Decision Making in Hospice and Palliative Care During the COVID-19 Pandemic
News Release, April 6, 2020
Alexandria, VA—National Hospice and Palliative Care Organization has developed a new COVID-19 ethics toolkit, the Ethical Framework for Decision Making Guide, available free of charge on the NHPCO COVID-19 resource page. This toolkit can help providers anticipate difficult decisions, provide information and support to seriously ill individuals and their families, and connect seriously ill individuals to resources aligned with their goals of care. The kit includes an ethical framework written by Rev. Dr. Carla Cheatham; information from a booklet on ethical considerations during a pandemic; NHPCO’s Shared Decision-Making tool; and discussion, symptom management, and comfort care tools from Dr. Mimi Pattison at CHI Franciscan. The Ethical Framework for Decision Making Guide, drafted by members of NHPCO’s Ethics Advisory Council, is offered not in place of regulatory guidance from CMS, but as a tool to assist programs and professionals in having these critical conversations. … This ethical framework resource is not intended to be the final word on the matter but is offered as a starting point for an on-going and evolving dialogue. “Here at NHPCO, we believe that community-based hospice and palliative care providers are a critical partner in responding to the COVID-19 pandemic,” said NHPCO President and CEO Edo Banach. (Hospice News Today, 4/7/20.)
- Ethical Decision-Making
MEDICAL ETHICIST EXPLAINS CONSIDERATIONS FOR DIFFICULT COVID-19 CARE DECISIONS
As the novel coronavirus spreads and begins to overwhelm American hospitals, life-saving care will become a scarce resource. In preparation for the rapid growth of COVID-19 and the shortages of resources, ethicists are drawing up guidelines and decision trees for making sure care is applied where it can do the most good. Tough decisions will be made over who benefits from care and who does not. Rationed healthcare is not a circumstance most Americans are accustomed to.
In a recent episode of Social Distancing, an Atlantic podcast, host Katherine Wells and author James Hamblin interview the head of the division of Medical Ethics at the NYU Grossman School of Medicine Arthur Caplan. The Atlantic indicates that decision trees are based on the four basic principles of medical ethics. Those four principles are personal autonomy, beneficence, non-maleficence (often referred to as “do no harm”), and justice. Caplan says that in following these principles, a commitment against discrimination is required first and foremost. “I'm looking for a statement that says everyone will be considered. That includes elderly people, the chronically ill, the disabled, and also would include no discrimination by gender or race or culture,” he says.
Examining physiological differences is a factor in decision making. “That does put people who have underlying chronic illnesses involving their respiratory system—chronic obstructive lung disease damage from vaping, smoking—that could put you down lower than somebody else,” Caplan explains. Age may also play a factor in such physiological decisions, though normally as a tiebreaker. Hamblin points out in the interview that this could seem at odds with the anti-discrimination priority. “It runs up against some of the advocacy with people concerned that age needs not to be a point of discrimination,” Hamblin says. “Here’s the way to think about that,” Caplan responds. “I said when I started, everybody gets considered and that's the nondiscrimination at the front end.”
Hamblin asks Caplan about the news that Northwestern Memorial Hospital was considering designating every COVID-19 patient as DNR. While Caplan says he does not think hospitals will end up taking on such measures, he explains that when making a judgement over resources of time to suit up, personnel, hospital beds, and protective equipment, “do not resuscitate” decisions will probably be reached sooner than they would under different circumstances.
Additionally, advance directives will likely be very difficult to access. “Remember, many people are isolated in these units. Their loved ones may or may not be around to communicate something. It’s not business as usual,” Caplan says. “Rarely do we find living wills that get read to guide treatment in normal times. It’s usually your friends or family, your partner who speaks up and says, you know, they wanted everything or they didn't. But if they're in the hall far away and we don't want them in the intensive care unit, or surrounded by coronavirus patients, that isn't even going to happen.”
Such considerations are difficult to stomach. Hamblin and Wells both indicate that these decisions make them uncomfortable. They ask Caplan for his advice on coping with this grim reality. He stresses his support of the pooling and expanding of resources such as the naval hospital ship pulling into New York Harbor, the Javits Center converted into a field hospital, and the sharing between the V.A. hospital system and the city’s hospital system. “Those are ways to avoid rationing. And I’m all for that first.” Counseling, and the support of hospital chaplains, social workers, and psychologists will all be important, too, he says. This will be true both in supporting the bereaved and the healthcare workers who may likely be making unprecedentedly difficult ethical decisions. “I know it’s tough. I know it’s emotionally wrenching. I know it’s miserable. I know you don’t want to do it. It wears on you, and it should,” he says. “Part of my answer is, we should be feeling terrible and miserable when we have to do this.” (The Atlantic, 4/1, www.theatlantic.com/health/archive/2020/04/social-distance-ration-doctors-care/609229/) (Hospice Network News, 4/7/20.)
- Fact sheet allowing hospice into nursing facilities, based on the article below.
Tools For Your Hospice Tool Box—If Nursing Facilities Are Improperly Restricting Access To Hospice Personnel During The COVID-19 Pandemic, We Have A Tool That Can Help
By Meg S.L. Pekarske, Bryan K. Nowicki & Andrew Brenton
JD Supra, March 24, 2020
The Husch Blackwell Hospice Team has been receiving reports from hospices throughout the country that nursing facilities are prohibiting hospice workers from entering the facility to provide essential end-of-life care to hospice patients. Such access is being denied pursuant to visitor restrictions. However, hospice personnel are not visitors but are recognized by the Centers for Medicare and Medicaid Services as essential health care personnel who must be given access. Hospices and their nursing facility partners have a shared responsibility to ensure the health and safety of hospice patients residing at facilities. Denial of facility access to properly trained and equipped hospice personnel is contrary to federal nursing facility regulations and CMS instruction. … Husch Blackwell has prepared a tool, available for download, that hospice providers can use to inform nursing facilities of their legal obligations to provide hospice personnel with facility access. The tool can be e-mailed or otherwise provided to your nursing facility partners. Additionally, we have compiled several resources, also available for download, that support the right of facility access by hospice workers. [Per Hospice News Today 3/25/20, Editor’s Note: The authors are members of the Husch Blackwell Hospice Team.]
- Caregiver challenges with decreased visitation of loved ones - we've got to figure this out, per Hospice News Today 3/19/20 and 3/31/20.
Hospitalized adults need their caregivers—they aren’t visitors
By Jason Karlawish, MD, STAT, March 29, 2020
… During this pandemic, a hospital policy that restricts visitors is well meaning. People who don’t provide care are viral vectors. For someone like me, however, “visitor” is a misnomer. Should my uncle be admitted to the hospital, either because of Covid-19 or something else, he’ll need me not simply to drop off a newspaper and flowers. Individuals with Alzheimer’s disease, Parkinson’s disease, head injury, Down syndrome, and other conditions have cognitive impairment. They’re at heightened risk of delirium. They need a caregiver. Hospitals’ Covid-19 “visitor policies” ought to acknowledge this. … When this pandemic is over, we ought to compare the outcomes of care in hospitals that recognized the role of caregiver and had programs like HELP [Hospital Elder Life Program] and those that did not. I’d bet we would find that when caregivers were present, resources and lives were saved. Even more valuable will be the dignity we preserved when faced with a pandemic that threatened humanity. With these insights, we’ll change “visitor rules” to recognize the need for a caregiver for persons with cognitive impairment. When this is over, we’ll take better care of each other. [Editor’s Note: The writer is the co-director of the Penn Memory Center and author of the forthcoming book, “The Disease of the Century: How Alzheimer’s Became a Crisis and What We Can Do About It.”]
With nursing homes closed to visitors, last goodbyes can be lost to coronavirus
By Joanne Kimberlin, Virginian-Pilot (Norfolk, VA)
March 18, 2020
My dad is dying. But he’s still too alive for us to be allowed to come see him. Long-term care facilities—he lives in one on the Peninsula—closed statewide this week to visitors, an effort to protect their extremely vulnerable populations for as long as the coronavirus threat lasts. Exceptions are being made for “end of life” situations. My father’s case, like untold others, doesn’t quite qualify. He’s 86 and under hospice care but isn’t considered to be “actively dying”—the required stage for visitors to be let in. Actively dying, hospice has explained, generally means “unresponsive.” … Millions are facing hardships in this surreal time of pandemic. This is one of those sacrifices. Barely imaginable just a short time ago. Unlike paychecks or toilet paper stock, these last few visits can never be replaced. But we get it. Coronavirus is especially lethal for older folks. … Staffers are doing what they can to help family members like us, going to his room to hold up their own cell phones so we can have a few minutes with him over FaceTime. No, it’s not enough—a tiny screen, made worse by the fact that he’s hard of hearing. [Editor’s Note: The author is a reporter for the Virginian-Pilot.]
Coronavirus—Families to be forced to use Skype to say goodbye to dying relatives
Daily Star (Watford, England)
March 18, 2020
Heartbroken Brits dealing with the sudden shock of the impending death of a loved-one from coronavirus may be cruelly forced to use Skype to say their last goodbyes. Family members may be blocked from seeing their relatives or even entering the area where they are gasping their last breaths as the deadly virus sweeps the nation. Under-pressure NHS [National Health Service] bosses are scrambling to find ways to reduce the spread of the killer bug and new official guidance suggests using “mobile devices and video calling” to say the final words to nearest-and-dearest before they die. Doctors have been told to restrict visitors in intensive care wards as best they can and if the outbreak of Covid-19 reaches the levels boffins fear it might, embattled medics will also have to stop “non-essential staff and any families or friends” entering clinical care areas. This means distraught Brits may never get to see dying loved ones in person, instead resorting to a Skype or other video messaging apps.
Finally, a few thoughts about how the Hospice Analytics team has been working to help during this crisis:
- Prices Remain the Same: We announded a planned price increase in February, effective 4/1/20. We've postponed this price increase, as right now doesn't seem to be the time to ask hospices for addtional revenue. This, despite having some long-standing clients opt not to renew subscriptions right now and seeing a decrease in new subscriptions.
- Colorado Crisis Standards of Care: Colorado is one of ~20 states with Crisis Standards of Care, however we have no section addressing palliative care, hospice services, or end-of-life care (only ~10 states do). Our team is partnering with a governor-appointed committee to assist in the development and implementation of a new section focused on palliative and hospice care.
- Grants: We've been fortunate to assist in the grant proposal process for the Louisiana ~ Mississippi Hospice & Palliative Care Organization and the Illinois Hospice & Palliative Care Organization. Each organization was funded a $25,000 grant by NHPCO to strengthen their Hospice / Veteran Partnerships this year.