Aligning Practice with Policy: Pima Council on Aging

BY JON STONE | JANUARY 4, 2019

This is the first installment in a serious of blog posts highlighting advanced illness innovation in action. To check out the latest posts in the series, please click here.

His mother was 87 when it happened. Her chest hurt. The pain persisted. He asked her what she wanted for her care: ‘Do you want the doctors to find why you hurt? Will you want them to treat it? Will you want them to just manage your pain?’

His sister tried to get their mother’s wishes recorded too, “but we could not get her to the place of actually reducing all of that to writing,” he said.

“She ends up going to the doctor.  The doctor ruled out heart problems, she ruled out breast cancer.”

A month passed. And another. The pain sharpened.

“She went to see her primary care doctor because she thought maybe her asthma was acting up. He sent her to an urgent care, which in turn sent her to the emergency room at a hospital in Phoenix.”

That’s where doctors diagnosed his mother with Stage Four lung cancer.

She quickly declined.

“An oncologist and pulmonologist came into her room and basically said, ‘You have to understand. We can buy you six months but it’s going to be pretty unpleasant.’”

Mark Clark wasn’t aware of it at the time, but long ago his mother had filled out a document naming him as her health care Power of Attorney (POA), which designates the person who can legally make decisions as to what medical treatment should be given. Although his mother was still competent to make her own health care decisions—and ultimately chose to live out her remaining time in hospice care—knowing the POA was executed would have saved Clark and his siblings uncertainty and heartache.

“These issues of making decisions that you can articulate to a person that you trust—I’ve lived the personal experience of what it’s like when you don’t do that ahead of time,” he said. “Trying to actually get that stuff done ahead of time in a setting where you don’t have an oncologist standing over you with a chemo cocktail in her hand is probably a better way to do that.”

Three weeks after his mother entered the hospital, she died.

On top of the personal and family torment that Clark and his family endured, is the irony that at the time, and to this day, Clark heads The Pima Council on Aging (PCOA), an Area Agency on Aging (AAA) whose scope has increasingly expanded to include promoting the use of POAs and advanced care directives (a legal document in which a person specifies what actions should be taken for their health if they are no longer able to make decisions for themselves).

AAAs are public or private nonprofit agencies established by the Older Americans Act (OAA) that coordinate and offer services to help older adults remain in their homes and communities. PCOA, which serves areas in and around Tucson, Arizona, like AAAs across the country, is charged with offering a range of supports that optimize older peoples’ health, independence, and dignity.  Its mission “to promote dignity and respect for aging and to advocate for independence in the lives of Pima County’s older adults and their families” is an embodiment of the Aging Network’s commitment to improving the quality of care and quality of life of older adults and their caregivers.

Critically important for those who face advanced illness, a key component of the PCOA mission is to help clients learn of and execute the proper documents to express their end-of-life wishes.

That the CEO of an organization serving vulnerable older adults struggled to understand his own mother’s wishes shows how common and pervasive the difficulties that stem from a lack of intentional advance care planning can be. And it reinforces the value of initiating these conversations early and often.

“For us, there would have been fewer unhappy conversations between my siblings and me, and it would have meant that there was less franticness going on,” Clark says.

There are now many different resources through which families and loved ones can receive access to and guidance in initiating advanced care planning.  In addition to populating an advanced care directive, and a health care Power of Attorney, these can include a mental health Power of Attorney, which allows a trusted person to make mental health care decisions on someone’s behalf,  a living will (one kind of an advanced care directive which generally takes effect only during a person’s terminal injury or illness), and a Do Not Resuscitate Order (a doctor’s order that tells medical personnel not to perform CPR if a loved one goes into cardiac arrest).

For example, people can easily access these documents online, and many states, like Arizona, distribute them through their Attorney General’s office. Sometimes eldercare or estate attorneys advocate that their clients execute the documents as part of estate planning.

But increasingly, Area Agencies on Aging across the country are playing a stepped-up role in fueling the effort to ensure older Americans have thought through and expressed their end-of-life wishes.

This represents a significant evolution for AAAs, and a reflection of the importance of advanced care planning—emotionally, medically, financially, spiritually—in the lives of Americans.  AAAs were created to help older people and their caregivers live quality lives with as much independence and dignity as possible.  Traditionally, these efforts focused largely on easing the burdens of day-to-day living: helping older people with meals, in-home care, transportation, budgeting.

But early on, The Pima Council on Aging took steps to coordinate efforts with numerous local organizations to bring advanced care planning resources to community members and to provide clarity and order during a life stage wrought with unpredictability and imbalance.

“A board member came to me who questioned why PCOA was involved in this,” Clark said.  “We were supposed to be all about helping people live full and independent lives.  Not about helping people die.  So, the board had had some robust conversation about that.”

In 2013, PCOA submitted an application to develop a community end-of-life coalition serving the Tucson area.  The idea was to bring together into a community coalition disparate organizations and people—faith communities, hospitals, government entities, eldercare lawyers—who are interested in-end-of- life issues.

PCOA continues to work with entities throughout Arizona which offer advanced care planning services and the people who need them. It serves as the communication help line in Pima County for the Arizona End-of-Life Care Partnership, which is anchored by the United Way of Tucson and Southern Arizona.

PCOA and its staff and volunteers are also directly involved in discussing end-of-life planning with members who bring up the topic or might benefit from learning about it. This includes one-on-one and group-based education and coaching.

Casual observers might notice these collective efforts manifesting all over town—within faith communities, in libraries and other locations. Thousands of the Arizona Attorney General’s end-of-life packets have been mailed to members of the community.

This initiative of this Area Agency on Aging focuses on the far end of the continuum of life. But as Mark Clark sees it, and personally learned from it, “having a good end of life is important to having a good life.”

Investigating How Health Navigation Improves Maternal Mortality on Mfangano Island

December 14, 2018

[From a series of writings that demonstrate the University of Minnesota’s collaboration with academic institutions abroad to promote self-sustenance and better health around the globe]

A woman is in labor and she and her baby are in distress; her midwife cannot manage the complications. The nearest neonatal and obstetric care facility is hours away. The transport across Lake Victoria to the mainland takes about an hour, if a boat is even available, then it could take another one to two hours to reach an obstetrician and an operating room, which also may not be available, in a county of one million residents.

On Mfangano Island, eight thousand miles from Minnesota, in the middle of Lake Victoria, off the coast of Kenya, a University of Minnesota medical student is working with the Island’s residents to cut that travel time and to save peoples’ lives.

In July 2018, Nick DesLauriers arrived on the island as a Doris Duke International Clinical Research Fellow. He is working with Charles (Chas) Salmen, UMN Department of Family Medicine assistant professor, on a project funded by a UMN Center for Global Health and Social Responsibility (CGHSR) seed grant. The research team is studying whether the “Health Navigator” program, through which trained community health volunteers (CHVs)—first responders—in the village, can effectively coordinate and expedite emergency care transfers to the mainland. The project uses an emergency boat, available 24-hours a day, with a captain and a nurse.

Specifically, Nick is screening and analyzing the emergency cases that occurred across the island and surrounding islands. He is measuring delays and evaluating the factors that contributed to these delays.

There are eight health facilities on Mfangano Island and an additional facility on each of its three surrounding islands. But, Nick says, they lack the resources and operating rooms necessary to treat obstetrical and neonatal emergencies, which total approximately 100 per year on the four islands.

“Morbidity and mortality are currently very high on the island from these emergencies due to the remote location and very limited access to emergency and advanced obstetric services,” Nick says. “We hope to use this information to identify program changes that can shorten delays in care during emergencies, and thus reduce maternal and neonatal mortality.''

Twelve years ago, Nick’s mentor, Dr. Chas Salmen, initiated the collaboration on Mfangano and learned that health-related progress on the islands—and in any global health case—depends on establishing relationships, trust, collaboration, and deference to the culture and customs of the local people. Nick is experiencing this first hand, through his tenure on the islands, which will continue until May 2019.

“It's been such an important stepping stone to get the chance to spend an extended period of time to invest in understanding the research process and how this process is different in a global setting,” Nick says. “As one tasked with helping coordinate the study, I have to recognize the value in the skills and knowledge I bring to the table, but also be careful to not make too broad of assumptions that are unique to my experiences and background but are not as applicable here.”

Nick’s work is part of the MOMENTUM Study (Monitoring Maternal Emergency Navigation and Triage on Mfangano), a collaborative research effort between the University of Minnesota, local partners on Mfangano, and investigators at Maseno University in Kenya and Makerere University in Uganda. He works closely under the mentorship of Dr. Salmen as well as MOMENTUM Study CO-PI, Dr. Louisa Ndunyu, Chair of Maseno University Department of Public Health. Other members of the research team include Evance Ogala, an MPH candidate at Maseno, and Dr. John Ssenkusu, a biostatistician at Makerere University.

Implementing the study is building capacity of local investigators and creating long-term research partnerships. “As for the training, the treat was all mine,” says Dr. Ndunyu, who recently returned from Mfangano where she worked with Nick to plan a training for local research staff. “It was an exciting, adventurous experience being on the Island for the very first time. I enjoyed every little bit of it and the moments shared with everyone in the team. It is a great team.”

Nick says his research on the islands expands well beyond logistics and medical considerations. Being attuned to social, economic, political, and cultural dynamics helps foster the community’s engagement, which is crucial to the project’s success.

“I've learned how important it is for research projects in international settings to have community buy-in and support, as the research project needs to be seen as something that will benefit the community. If it's not seen that way, then it should be changed,” he says.

Learn more about the Mfangano Community Health Field Station @ the Ekialo Kiona (EK) Center.

Priority Health: High-Quality Care Through Communication

Numbers are foundational to the algorithms and actuary science which contribute to the creation of healthcare payment models. But increasingly, organizations that are trying to promote optimal care for Americans with advanced illness insist that four words are essential to these equations: What do you want?

When people living with advanced illness are asked what they want, their answer, and the discussion it prompts, yields insight that promotes effective and efficient care.

This is how Dr. Greg Gadbois, Medical Director of Priority Health, a Michigan-based Medicare Advantage (MA) plan sees it. As an MA plan, Priority Health receives a per member per month reimbursement from the Centers for Medicare and Medicaid Services to provide its members with health insurance.

5 percent of Medicare beneficiaries are in their last year of life and they account for 28 percent of Medicare spending. This care is expensive because of the frequency with which Americans with advanced illnesses are hospitalized and receive services they did not necessarily want in their last year of life.

Consider how this overall end of life experience and its corresponding costs would change, if earlier and along the way, a doctor, or nurse, or chaplain, or social worker, or a trusted family member would ask their patient, “what do you want” for yourself at this point in your life?

If that person wants to focus on living the highest quality of life with the lowest degree of pain possible, a caregiver might likely suggest introducing advanced illness management, which provides services to relieve pain and improve the quality of life. Just under half of Priority Health’s members who are living with advanced illness are actively involved in an advanced illness management program.

Dr. Gadbois recounts what a colleague told him of his experience after asking a terminally ill patient what he wanted most for himself at this final stage. “He said ‘My daughter is getting married in three months. I want to walk her down the aisle. That’s what I want to do’. So we said, ‘Alright, let’s set a plan up, so that we can get you to that.’”

An interdisciplinary care team, which contributed to this patient’s clinical, psychosocial and spiritual needs, helped him reach what to him was this most important life milestone.

“He was able to walk her down the aisle. That’s what he wanted,” Gadbois recalls from the conversation. “It really comes down sometimes to some of the simple things. In many, many cases, what’s important to them is how do I move from this stage in my life to the next, wherever it might lead me, with as much dignity and grace as I can.”

But providing team-based advanced illness management to stimulate such solutions, faces problems. Medicare’s fee-for-service payment model does not cover the full range of medical, psychosocial, and spiritual supports which people who live with advanced illness need, if they’re not enrolled in a hospice program.

“Your ability to financially support the team that needs to be in place to do this, even if you were able to find up-front funding to do it, still wouldn’t be sustainable long term,” Gadbois says. “The money is just not there from a reimbursement standpoint.”

As an MA plan, Priority Health is required to provide its members with a defined, baseline level of coverage, but any additional covered services offered remain unreimbursed by CMS, and the plan incurs the cost.

Despite this upfront expense, Priority Health provides its members who could benefit from advanced illness management with a full suite of coordinated services and resources, to address their pain and improve their quality of life.

“It’s worth it because we’re doing the right thing for the patient,” Gadbois says. “Your goal is to improve patient outcomes, improve their experience, and also lower the cost of care.”

Gadbois and other healthcare leaders are working to change the way CMS pays for care to incentivize these types of programs. In March, a panel of experts convened by the U.S. Department of Health and Human Services (HHS) supported two alternative payment models which would promote the full use of care teams to provide advanced illness services to people who need them.

C-TAC and the American Academy of Hospice and Palliative Medicine (AAHPM) submitted the models and are working to secure HHS approval for a combined and funded Medicare payment demonstration project.

HHS’s payment demonstration for an advanced illness management program could be many months away. But concurrently, C-TAC believes it’s imperative to convene stakeholders to make sure they are prepared to implement the model. The organization’s 2018 National Summit on Advanced Illness Care, October 9 – 11 in Denver, will bring together healthcare organizations from around the country to, among other front-burner topics, focus on advanced illness clinical and payment models.

Gadbois hopes to receive from the Summit gathering, greater insight on implementing both advanced care planning and end of life discussions across the broader healthcare community. He also expects to learn how C-TAC’s policy advocacy is making a difference to promote end of life care.

“C-TAC stands as one of the strongest advocates for promoting Advanced Care initiatives,” he says. ‘The Summit gives me the opportunity to hear from national thought leaders.”

The Summit will also address other pressing issues in the movement, such as person-centered care programs, caregiver support, policy reform, state and community organizing, healthcare technology, and indicators of success.

Gadbois’ gauge of success is whether his members receive from their healthcare experience what they want. And when that happens, he says, other stakeholders win as well.

“We see significant savings in the long term,” he says. “Someone has to pay for this care. But when you get better outcomes and better experience, isn’t that what we want to do?”