The Blog to Transform Advanced Care
Advancing Care through Innovation, Observation and Collaboration.
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.”