This article is part of a yearlong occasional series on late-in-life health care — when chronic illness or a constellation of medical problems can cause a cascade of new needs, complications and worries.
Carolyn Brown recalls a day when “doctors were seen as gods.”
“What they said went,” said Brown, of Hopkins, whose failing heart has driven her to see a host of doctors.
Under that traditional view, a medical pantheon presides over patients battling chronic illnesses. In Minnesota, chronically ill patients typically see nine or 10 different doctors a year.
Sure, they can be thankful for that specialized medicine. But too often, these sick and weak patients find themselves lost in logistical hassles and medical confusion as they shuttle from doctor to doctor, striving to make sense of instructions that don’t always connect – and, sometimes, actually conflict.
Now, though, health-care organizations in the Twin Cities and across the nation are testing innovative ideas for helping late-life patients coordinate their complex treatment regimens. At the same time, they are exploring patient-centered alternatives to the old doctor-knows-best model.
The innovators envision care that would include help with practical challenges such as transportation to medical appointments, paperwork and sorting through multiple diagnoses, prescriptions and follow-up instructions. Further, the care would reach beyond the practical to respect patients as individuals with their own life goals, fears and spiritual needs.
‘We all need to be seen as people’
“When you tend to people’s real wishes, real goals, they make choices that work better for them and are less costly. They suffer less,” said Dr. Eric Anderson, a specialist in palliative care at Allina Health in the Twin Cities.
“As we age and become ill, we all need to be seen as people,” he said.
Anderson is the principal investigator for an Allina Health initiative called Robina LifeCourse. Launched in 2013, it is one of several efforts under way nationwide to test models for delivering more supportive, whole-person care to seriously ill patients and their families.
For Carolyn Brown, the benefits began with ample time to discuss the subtle signals and serious effects of heart disease with her doctors at an Abbott Northwestern Hospital clinic.
“We talk about anything and everything,” Brown said. “I try to write down what I want to talk about. We discuss that, and then we talk about other stuff.”
Brown has days when she doesn’t feel well enough to go to the clinic. It helps, she said, that LifeCourse sends people to her. She’s had home visits from a care coordinator, a chaplain, a pharmacist, nurses and others.
At age 79, Brown said, “I’m tired … my body is just pooping out on me.”
When Brown’s energy has lagged, her support team has reached beyond her medical needs to help ease her stress over clearing out multiple storage lockers and disposing of craft supplies, a doll collection and “tons of books.” She’s had help writing a legacy letter to leave for her family and coping with the loss of friends who have died.
Perhaps most important, caregivers have listened to her.
“They are finding out that we have something to say,” Brown said.
The LifeCourse project calls for such teams to partner with more than 300 patients living with dementia, advanced stages of cancer or heart failure. The study is supported by a grant from the Minnesota-based Robina Foundation. In conjunction with this effort, TPT received a grant to make videos of LifeCourse patients and MinnPost received one for general reporting on the subject of late-life care.
Rather than treat patients episodically for different diseases, LifeCourse teams work with individual patients and their families through challenges they face both inside and outside the health-care system. At the center of each team is a nonclinical care guide. The team also works with doctors and other key players at Abbott Northwestern Hospital, Walker Methodist Health Center and Augustana Care.
Lessons in listening
While listening to patients like Brown was an original goal, LifeCourse teams have gained some deep insights about listening.
What they came to realize is that “the process of telling it is as important as the stories,” he said. Rather than pour out all at once, the stories unfold over time in ever new chapters, and the care guides “get a pretty deep understanding of what matters most to people, what thoughts and feelings drive their decisions and behaviors.”
One result is a better ability to help patients communicate their wishes and concerns to doctors, chemotherapy nurses and everyone else involved in their care.
“At the most dramatic end, what you gain is (the ability) to sit down with the patient and have just the right conversation,” Anderson said. “They are able to make the transition to the next level of care, for example, because of the groundwork that the care guide has been able to do.”
Help through a scary phase
When Margaret Stenger, of St. Louis Park, was recruited for LifeCourse, she already had a medical team in place: a trusted personal doctor, an oncologist and the professional networks they brought to treatment of her lung cancer.
LifeCourse added helpful structure by laying out important steps such as completing a medical directive, said Stenger, 58. Those steps can be overwhelming for patients and their families, especially at a time when they are all but paralyzed with fear of what is to come.
“This is scary,” Stenger said. “A lot of people just shut down because it is so scary.”
And the fear can mount unnecessarily for patients who are left on their own to comb the Internet for information about diseases. For Stenger, much of the information was off point because her cancer was not related to smoking but rather to changes in what’s known as the ALK gene.
“The problem, at least with my type of cancer, is that so many strides have been made in the last three years that a lot of the information on the Internet is not right anymore,” she said. “When you go on these websites, you get some basic information. Some of it is good. Some of it is not.”
Every patient battling serious and chronic illnesses needs a “to get a team in place and work with it,” she said, whether that happens through an initiative like LifeCourse or independently.
But even with the best team, it also is important “that you advocate for yourself,” Stenger emphasized. “If you are not a good advocate for yourself, find one – sister, brother, uncles, aunts,” she said.
A guide for better care
LifeCourse plans call for researchers to measure patient and family reports on quality of life as well as experiences with care, utilization of palliative care and hospice. They also are to track care-team burnout. The results will be used to guide Allina’s continued transformation of its late-life care services and its partnerships with community providers of social services and long-term care.
The researchers expect to publish their findings. For now, Anderson said that “early results around quality of life are encouraging, and cost data are preliminary.”
While care teams spend more time with each patient, they also create opportunities to potentially curb costs – for example by assigning pharmacists to patients in order to reduce side effects from medicines and overlaps in different prescriptions.
Further, they can help patients evaluate aggressive last-ditch treatments. Care for people with chronic diseases accounts for more than 75 percent of national health-care spending, much of it coming near the end of life. In Minnesota, Medicare paid out an average of $36,000 during the last six months of life for each recipient who died in 2010.
Coordination, a high priority
Calls for innovation are coming not from patients alone but also from health-care professionals. They say the medical landscape is dominated by specialists and institutions operating within their own silos and too often failing to share information and coordinate treatments.
Dr. Matthew Press said his work as an internist often involves helping patients navigate that complex system. Press practices at New York-Presbyterian Hospital/Weill Cornell Medical Center. In an article for the New England Journal of Medicine, he provided an “instant replay” of one 70-year-old patient’s experience in treatment for a kidney stone and a mass on his liver.
Over 80 days the patient (identified only as Mr. K.) saw 11 different clinicians and had five procedures. Press communicated with other clinicians 40 times via 32 e-mails and eight phone calls and also communicated with Mr. K or his wife 12 times.
“Care coordination is now a high priority in health care and is the backbone of new models of care … that aim to improve quality and reduce costs,” Press wrote. “But it remains an abstract concept to many people who are not on the front lines of clinical care, as well as to some on the front lines who lack (or don’t want to have) the quarterback’s view of the field.”
Press cited two main arguments for such coordination: First, patient safety is at risk because “patients can be harmed when the many moving parts of their care are out of sync.” Second, health care increasingly is delivered and financed across multiple clinical settings where the various players may never see each other.
A new model for coordination in Medicare
One of the biggest players on the late-life landscape is the federal government, through Medicare and Medicaid. Now, it too is testing new approaches to treating patients with multiple chronic conditions.
While Medicare has allowed some payments for care oversight, it has worked for the most part in a traditional system where doctors and various specialists are paid for face-to-face visits.
Under new rules proposed to take effect in January, the government would pay separate monthly fees to doctors who manage a comprehensive care package for Medicare patients with two or more significant chronic conditions. The doctors and/or their staffs are to draft a plan for each patient’s care, watch over medication management and communicate with other health providers who are treating the patients.
Approximately two out of every three Medicare beneficiaries have multiple chronic conditions, according to the U.S. Department of Health and Human Services.
The latest efforts to streamline chronic care management and make it more effective come on top of other innovation projects the federal government is sponsoring in Minnesota and other states.
Expanding ranks of caregivers
Across the country, many public and private organizations are testing other new ideas.
One national project proposes a “Caregiver Corp.” Inspired by the Peace Corps model, innovators at the Michigan-based Altarum Institute have linked with the Caregiver Action Network to push their idea all the way to Capitol Hill.
They call for a national network of locally based volunteers who would be screened and trained to supplement the nonmedical care provided by friends and families – from preparing meals to navigating computers to simply hanging out with patients who crave companionship.
In September, U.S. Sen. Bob Casey, D-Pennsylvania, introduced legislation that would create the Caregiver Corps. Under the bill, those 18 and older who consent to criminal background checks could serve as full-time or part-time volunteers for up to two years. They could directly assist people needing services and also assist informal caregivers, giving them respite from duties that often overwhelm relatives and friends.
Compensation could be provided in the form of stipends, tuition incentives or academic credit. Volunteer hours also could be banked for use against future needs for assistance.
Dr. Joanne Lynn, who directs Altarum’s Center for Elder Care and Advanced Illness, said ideas like the Caregiver Corps and initiatives like the Allina LifeCourse project “can help us figure out how to take a whole series of small steps that will get us where we need to be.”
This series is funded through a regrant by Allina Health from the Robina Foundation. It is conducted in conjunction with media partners Ampers and Twin Cities Public Television (tpt), whose documentaries are focusing on Minnesotans enrolled in the multiyear Allina study involving patients at this time of life.