There have been a couple of recent studies that confirm what I have observed as a palliative care nurse practitioner (NP) in an academic medical center: that there’s still a tendency to pursue very aggressive care with older people with cancer. While every situation is different, the evidence shows that people with cancer could also benefit from palliative care and advance care planning to make sure they’re getting the best and right care for them.
Palliative care could prevent many ED visits.
The first study to catch my eye as a former ED nurse was Trends and Characteristics of Potentially Preventable Emergency Department (ED) Visits Among Patients With Cancer in the US. This study reviewed data on almost a billion (854,911,106) ED visits, of which 4.2% were made by patients with cancer. The mean age of those patients, not surprisingly, was 66. The study found that more than half of ED visits among patients with cancer, 51.6%, were identified as potentially preventable, with the absolute number of potentially preventable ED visits increasing substantially between 2012 and 2019.
The authors concluded that this highlights “the need for cancer care programs to implement evidence-based interventions to better manage cancer treatment complications, such as uncontrolled pain, in outpatient and ambulatory settings.”
This sounds a lot like palliative care to me. Palliative care helps manage pain and other issues from cancer or its treatment and can be provided along with all other oncology treatment. We know that coming to the ED can be dangerous for immunocompromised people, like many of those with cancer. Having cancer can also be a reason to admit these patients—and so a preventable ED visit can lead to a preventable hospitalization. People call 911 when there’s no other option; supportive services need to be in place in advance, especially at night or on the weekends.
Aggressive care common in nursing homes at end of life.
The other recent JAMA study ran in February: Incidence of Aggressive End-of-Life Care Among Older Adults With Metastatic Cancer Living in Nursing Homes and Community Settings. Nearly 10% of the 1.5 million persons in nursing homes have received or will receive a diagnosis of cancer. While we know that aggressive end-of-life (EOL) care is common among community-dwelling patients with cancer, little is known about such patterns of care among nursing home residents.
The study looked at claims data from January 2013 to December 2017 among 146,329 older patients with metastatic breast, colorectal, lung, pancreas, or prostate cancer. They found that “despite increased emphasis to reduce aggressive EOL care in the past several decades,” nursing home residents were even more likely to get aggressive EOL care, hospitalization, or to die in the hospital than those living in the community.
Sound familiar? Nursing homes have a low threshold to send people to the hospital, so it isn’t surprising that more may end up there than those living in the community. But these were older people with metastatic cancers. Did they or their families not understand that or their likely poor prognoses? Did they not have advance directives saying they didn’t want such care? Had anyone even discussed any of that with them? My guess is that few had had those important conversations or had been offered a wider range of choices than just to be hospitalized or be resuscitated/full code.
New York Times columnist Paula Span recently commented on this study, pointing out that often this kind of care is not what the person or family really wanted. After reading her piece, I wrote a letter to the editor confirming that I see this clinically and that there are personal and financial consequences behind just the medical ones. The wife of a former patient of mine not only lost him when he died, but also their house, as the cost of medical care made her unable to pay the mortgage. Again, this kind of financial reality isn’t usually discussed until too late.
What can we nurses do to support informed choices?
We can ask our patients and families about their understanding of their illness and medical situation. We and our teams can then help correct any misunderstandings they may have. We can ask patients and families what matters to them to that we make sure that what we’re doing clinically is really helping them achieve their goals. And we can promote access to palliative care and advance care planning and to supports like social workers and chaplains if we see those would be helpful—and to hospice when that’s appropriate.
If older people with cancer are fully informed and want to come to the ED, the hospital, the ICU, I’m a fierce advocate for that. But most tell me that’s never where they wanted to end up and certainly not where they wanted to die.
Marian Grant, DNP, ACNP-BC, ACHPN, FPCN, is the senior regulatory advisor for the Coalition to Transform Advanced Care and a consultant for the Center to Advance Palliative Care and the University of Washington’s MessageLab Serious Illness Messaging project. She is a nurse practitioner in the palliative care program at the University of Maryland Medical Center and adjunct faculty at the University of Maryland and Johns Hopkins Schools of Nursing.
I worked for years in home hospice. Sometimes our patients called 911 in a panic but if we got to the house in time we often were able to keep them at home and comfortable. Most preferred that over a long wait in the ED.
About the loss of the house: reverse mortgages are not what they used to be. There are required impressive financial safety features to protect the person so that no matter the financial situation, the surviving spouse will not lose the home. That, with long term care insurance, palliative care, and hospice, are incredible gifts for peace of mind for people planning ahead for the inevitability of end of life issues.