Serious Illness is a Journey No One Should Make Alone. You Need a Team.
2-month-old female infant with massive global damage to brain cortex after cardiac arrest secondary to H. influenzae A meningitis. Brain injury is devastating with no chance for meaningful neurological recovery.
That may be the most gut-wrenching case summary I’ve ever read.
But for the three community health aides in the remote Alaska Native village where this baby’s family lived, it was terrifying. They faced the responsibility of caring long-term for this infant whose life they saved after she had a heart attack brought on by meningitis. Emergency personnel evacuated the child to Anchorage, where she was hospitalized and placed on a ventilator.
Severe brain damage left her unable to even swallow. Her prognosis: up to 17 years of life in a permanent vegetative state.
The parents wanted everything possible done for their daughter, in hopes of a miracle. But they didn’t want to stay in Anchorage. They wanted to go home, to their village of 800 people that had no hospital and no doctors or nurses — a place reachable only by plane.
No wonder the community health aides were distraught. They had limited resources and experience caring for a patient with such overwhelming needs. They didn’t know how to insert a feeding tube; they didn’t know how to manage the potential complications. What if the baby coded again?
To make matters worse, one of the community health aides was related to the baby’s family. What if she failed this child? How could she live with that?
So many questions, but no easy answers.
Fortunately, a hospitalist at the Anchorage facility that cared for the baby brought her case to the attention of Palliative Care ECHO, which is operated by the Alaska Native Tribal Health Consortium. Finding answers to the clinical and ethical questions surrounding this baby’s life remained tough, but at least we had a team working on them.
That team came together on a plan for the baby’s care. And the community health aides, who previously felt overwhelmed at the prospect of caring for this child, now accepted that responsibility, knowing that they had the support and resources of an entire team behind them.
Many people equate palliative care with hospice and end-of-life care. Really, though, in palliative care, we try to provide relief from the symptoms and stress of both curative and non-curative conditions. Our goal is to improve quality of life for patients and their families — physically, mentally, socially, and even spiritually.
But the people on the front lines of providing palliative care need support too. Palliative Care ECHO is there for them as well.
Palliative care is challenging in any environment. But in a place like Alaska, the added dimensions of isolation and lack of resources make it even more challenging.
Alaska is roughly one-third the size of the continental United States, with about 160,000 Alaska Native people dispersed across 228 federally recognized Tribes in remote villages. Most of these places are accessible only by air, boat or snowmobile. Few villages have doctors or nurses; many rely on a single community health aide to meet all their residents’ health care needs. And only a handful of the 160 Tribal health clinics are equipped to provide palliative care.
Our Alaska community health aides are heroes. They are the frontline workers, and, unlike community health workers in most other places, they can dispense medications, suture wounds, and hook patients up to IV lines.
But they can get burned out quickly. They sometimes work alone, shouldering a lot of responsibility. The resources available to them are scarce. And in these small villages, every patient is someone they know.
Palliative care cases often create ethical dilemmas for them: Is it ever appropriate to say “no” to a family? What if there is no family? What if the patient lacks capacity to make his own medical decisions? Faced with these kinds of questions, community health aides need advice and support from an interdisciplinary team of colleagues.
That’s why Palliative Care ECHO is so important for them.
Alaska is not my first experience with Project ECHO.
My wife and I are family practice doctors, and we share a calling to work in underserved communities. We did our training in Alaska to learn full-scope family medicine so that we could practice in communities with limited access to specialty medical care. We moved to Zuni, New Mexico, where we worked in a rural Indian Health Service hospital. In Zuni, we participated in a primary palliative care model that allowed American Indian patients with advanced illness to receive care in their home communities instead of being transported by helicopter to get care at faraway tertiary centers.
While in Zuni, I also learned about ECHO, a weekly videoconferencing education program that provides remote coaching to primary care clinicians who want to know how to treat patients with complex conditions. Through ECHO, my wife and I learned best practices for managing high-risk obstetric cases and complex diabetes from teams of specialists at the University of New Mexico. We found that ECHO was a great way to learn — from our specialist mentors and from our colleagues in other communities. By applying new knowledge and skills, it empowered us to provide specialized care for our patients in their home communities.
My wife and I loved Zuni, and my enthusiasm for palliative care grew during our time in New Mexico. We thought we would stay forever.
But then my mentors in Alaska encouraged me to return there and complete a fellowship in hospice and palliative care, with the goal of starting a statewide palliative care program for the Alaska Tribal Health System.
I knew this was something Alaska needed — desperately.
My wife and I were torn. We prayed about it. We both felt a strong calling to return to Alaska. And, in the end, we felt that Alaska Native communities deserved access to high-quality palliative care.
So, in September 2014, we returned to Alaska.
We have learned so much since moving back here.
Here’s something I didn’t fully appreciate before: When someone is in serious, prolonged pain or struggling with an advanced illness, they — along with their family members and health care providers — need a team. It can’t be one person’s job.
That team can’t be all doctors and nurses and social workers, either. It must include family members, neighbors, and other people in the community. When it comes to providing palliative care, everyone has a role.
We know we’ll never have enough palliative care specialists to meet the need in Alaska. But, as members of a specialty care team, we can share our knowledge and help people feel empowered. We can build community-based care teams around the state to provide palliative care for people where they live.
Through Project ECHO, that’s what we’re doing.
We started small, with an informal palliative care work group that met weekly at the hospital in Anchorage to talk about our challenges and brainstorm solutions. After about a year, we branched out and started a teleECHO clinic for palliative care.
Today, 20 to 40 “regulars” participate in any given clinic, including community health aides, primary care doctors, nurses, social workers, respiratory therapists, dieticians, pharmacists, counselors, and chaplains. It’s incredible to bring all these perspectives and areas of expertise together to address patient care. Together, our knowledge is growing in ways we never imagined.
Now we’re ready for the next stage of our plan: developing regional palliative care resource teams that connect via ECHO. We are building relationships with community and Tribal leaders in different regions so that we can learn from each other how to improve access to palliative care. In addition, we are developing resources and a curriculum to support and train community health aides in palliative care. We hope to create a palliative care certification for community health aides so that they can become regional leaders and champions to support the integration of palliative care in their communities.
It is also important that our primary care physicians and nurses use best practices for palliative care, consistent with what the community health aides are learning. Everyone needs to be in synchrony with each other.
When I did my family practice residency in Alaska, I visited many small villages where people with serious illness could not get the help they needed to manage their suffering.
It was heartbreaking.
Now, I am part of an amazing team that works together to find solutions and integrate palliative care resources and best practices throughout villages across Alaska.
Ultimately, we hope that our success extends far beyond Alaska. If a community-based approach to palliative care can work here, it can be applied anywhere.
The baby girl who survived a heart attack only to lose so much of her brain function died several months ago in her home village. Her family endured a tough journey that continues for the entire community as everyone grieves the loss of this little girl. However, with the help of Palliative Care ECHO teams across the state, the parents achieved their goal of bringing their daughter home.
There are no easy answers when someone has an advanced, serious illness. But if you have a knowledgeable and supported palliative care team, everyone takes better care of each other and no one has to make the journey alone.
