By Thomas Goldsmith
That’s the way North Carolina health-care professionals want the state’s health care system and broader community to consider and support fellow residents with conditions that endanger their lives and lifespans.
The Task Force on Serious Illness Care recommended improving end-of-life care and planning as important needs that call for more attention. The group, convened by the North Carolina Institute of Medicine, also dealt with broader gaps in North Carolina’s coverage and practice. A major thrust was to ensure that legal and medical tools that come at the end of life are in place for seriously ill people.
These are patients who don’t always get optimal treatment in North Carolina, according to the task force. The IOM partnered with the Duke Endowment, and also received support from the state AARP, the NC Health Care Facilities Association, the Association for Home & Hospice Care of North Carolina and the Carolinas Center.
The 60-plus members of the Task Force on Serious Illness Care say it’s time to develop a “system and culture” to create a better quality of life for people living with serious illness, as well as their caregivers and communities. The recommendation of the task force first appeared in a revised report in June and are getting a continued push by the North Carolina Serious Illness Coalition.
The task force report describes a seriously ill person as someone whose death within a year would not surprise an involved professional, such as a physician or nurse.
“Part of the reason that we wanted to keep that definition is that a lot of our conversations and recommendations deal with things like advanced care planning and end-of-life care,” said Michelle Ries, associate director of the NCIOM. “These are conversations that healthcare providers as well as legal providers, legal professionals and financial professionals need to have with their patients and their clients.
“Those are conversations that we wanted to make sure were being had throughout the trajectory of an illness, not at a time when a patient or family would be really taken by surprise by that conversation.”
Virus changes everything
Forming in 2019, the group completed its planned work and reported by its January deadline.
Then, the novel coronavirus and resulting pandemic began its reign of terror right on the heels of the initial report. Players from all sectors suddenly faced new medical and logistical challenges as well as major stresses on patients, caregivers and public and private health care systems.
North Carolina Health News recently interviewed three principals of this evolving effort on separate occasions. Some of their responses, lightly edited, form a Q&A below on how the group addressed problems and how it continues as a coalition to address issues sometimes lacking a high public profile.
Responding to questions were Catherine Sevier, state AARP president; Ries, associate director, North Carolina Institute of Medicine; and Dr. Laura Patel, chief medical officer, Transitions LifeCare, an organization offering hospice and palliative care services in the Triangle area and beyond.
NCHN: What kinds of patients regarded as seriously ill, as opposed to those who may be quite sick, but aren’t necessarily near death?
SEVIER (AARP): Let’s say some were smokers. They developed heart disease, and they might have diabetes alongside that heart disease, and they’re sick.
But they’re not imminently likely to die. And then something happens. They catch a bad cold or their condition worsens a bit just as they age in, and things get out of control and then they’d be really sick.
NCHN: How would clinicians change treatments for a patient who enters this stage?
SEVIER: We act differently once we’re seeing that person take that turn. We overload different resources. “Not being surprised that they die in a year” really is an indicator that they need more care than they traditionally have gotten, and we want the system to intervene aggressively.
NCHN: How did the organizers address the topics that touch the lives of so many people across North Carolina?
PATEL (Transitions LifeCare): What they did was bring together a really large, diverse group of folks from a lot of different areas. I think it was definitely an evolution, with a lot of focus on education and information at the beginning and then really trying to get to an understanding of what was needed in the state and getting to specific recommendations.”
Changes in end-of-life care
NCHN: How did the pandemic change families’ ability to make decisions about documents like the DNR (do not resuscitate order), the MOST form (Medical Orders for Scope of Treatment), and health care powers of attorney?
PATEL: Some patients were in a weeks-long process of being ill in different locations and the family literally hadn’t been able to see them until the patient was on his last day in the hospital.
It was so incredibly difficult for families to make decisions and to be able to come to terms with those decisions. We are going to see a lot of complicated grief from that. And it’s been just an extremely trying time for everybody.
NCHN: Especially given the onset of COVID-19, what kind of implications does the task force’s work have for people who wouldn’t typically be considered at death’s door?
RIES (NCIOM): A lot of the individuals and families that it’s aimed toward are older, over 60, but these are also conversations that can and should be had earlier in life. When you’re starting that planning for our retirement when you’re 25, they say, “Start a 401K.”
Yeah, but also maybe, fill out your advance care documents. A lot of the conversation that we had was about normalizing that conversation.
NCHN: What are the key goals of this task force and continuing work?
SEVIER: We need work in the advanced care planning to make it easy for people to make their wishes known, but still protect their privacy and their legal documents. We need assistance with telehealth and broadband, because without broadband, you can’t do virtual visitation.
Those two areas need attention and the third one is legislation around caregivers and respite care that people need when they’re taking care of someone that is seriously ill.
NCHN: What ground-level changes in statute or regulations did the task force suggest?
RIES: There are a couple of recommendations around changing the witness and notary requirements for advanced care planning documents because we heard from several providers about caregiver representatives as well about families that really faced logistical barriers in meeting those requirements for two unrelated witnesses and a notary. That’s especially true for individuals who might not have as many financial or other sorts of resources.”
More changes ahead
NCHN: What are some of the existing gaps in the system that have grown more glaring during the pandemic?
RIES: If you have somebody who’s facing a serious illness, and has several providers, the patient will need access not only to telehealth but also a system that’s more interoperable. What we’re seeing both with telehealth and the interoperability questions is that our state needs more robust broadband services in rural communities.
We had recommendations on that as well because if you’re going to expand telehealth, you have to be able to connect people and connect providers and patients. So there has to be continued investment in that as well.
NCHN: Can you give me an example of the importance of interoperability, of being able to communicate medical and technical information between parties working on different systems?
PATEL: If you can’t see information in real time, when you need it, and that information also can’t be communicated back to the patient and the family, it’s not helpful. And a lot of our [electronic medical records] have been designed more to meet billing requirements than actually to communicate.
What do you mean, “serious”?
The NC Task Force offers definitions and perspective on the term of art “serious illness”:
“Serious illness occurs when chronic or acute health conditions become serious enough to affect a person’s general health and functioning, and the illness is potentially life-threatening. For individuals with serious illness, it is possible that the effectiveness of curative treatment will decrease, and the focus of care may shift toward comfort.
“Throughout the work of theTask Force on Serious Illness Care, the task force used the above definition of ‘serious illness,’ as well as the additional context that the task force scope was defined by individuals for whom a health care provider would not be surprised if they were to die in the next year.”
— NC Task Force on Serious Illness
Disclosure: Both the Duke Endowment and the AARP are NC Health News sponsors. NCHN sponsors are not given input into editorial choices, even though sometimes their representatives may be interviewed for stories.