Innovating in Palliative Care: An Entrepreneur's Take

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Editor's Note:   
Cambia Grove honors our role as a platform for the innovation community to amplify their perspectives on topics applicable to the larger health care ecosystem. This post is a conversation between Cambia Grove members Sarah Stacpoole, RN, BSN and Sam Garrard,  Senior PR Associate at RH Strategic. Their conversation delves into the challenges and opportunities facing palliative care. The conversation adds greater depth and clarity for innovators participating in the 2020 Cambia Grove startup competition

The views expressed in this article are solely those of the author and do not necessarily reflect the opinions or positions of Cambia, Cambia Grove, or any other entity or organization.

How do we deliver high-quality care at every stage of life? How do we apply smart innovations to eliminate barriers and expand access to care? These are questions constantly on my mind, and I know I am not alone.   Fortunately, as a member of the Cambia Grove community, I get to ask these tough questions to entrepreneurs who wake up every day working to develop creative solutions to these challenges. 
Most recently, I had the chance to connect (virtually) with Sarah Stacpoole, RN at the University of Washington to discuss the future of palliative care. With the number of people living over the age of 85 years old expected to nearly triple by the year 2050,

Sarah sees significant opportunity to transform how palliative care is delivered both with workforce innovation and patient-centered technology.    

1. Sarah, what led to your passion for transforming aging-in-place and palliative care? 

I’ve been a bedside RN for almost a decade, and in that time, I’ve seen firsthand a gap in resources for older adults who are beginning to lose independence. Some adults are lucky enough to have caregivers, but oftentimes, those caregivers are not well-supported or formally trained for the tasks that they take on. I believe issues like these are likely only going to get worse unless we have a radical shift in how we support older adults and caregivers.

As the aging population grows, the reality is there won’t be enough trained health care workers, nor will there be enough beds to support this surge. Furthermore, Millennials, who have already been hit hard with two major periods of financial crises, will likely represent a large chunk of informal caregivers by this time and will be challenged to make tough decisions like taking off work to care for loved ones. 

While these are lofty obstacles, I entered this field because I’m optimistic about the future. I believe that everyone deserves access to affordable, compassionate care as they age. I also believe that we need to do more to attract people into nursing and caregiving. If we can elevate the accessibility and quality of caregiver training (and support), we can attract individuals into the field who may not have considered caregiving as a viable career choice before.  The key will be utilizing a palliative and empathy-based communication model to develop accessible, general, as well as disease-specific caregiver training for both formal and informal caregivers.

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Additionally, technology not only makes accessibility to training and caregiving resources feasible, but it opens a world of possibilities for engagement, design, and on-demand support that will be incredibly helpful.

2. Speaking of technology, where do you see your work having the greatest impact in palliative care? 

Palliative care is health care. It is health care done right. I think what may be unique about my future contributions is that I’m sneaking palliative principles into places where you may not typically expect to see them, such as caregiver education and innovative technology to help aging-in-place. Essentially, I’m using palliative concepts in design-thinking for tech and education.

When I first became involved with palliative care I thought to myself, why isn’t this the thematic undercurrent of all medical education!?

I found it frustrating that, often due to budget and staff constraints, palliative care was more often relegated to “end-of-life transition” than earlier complex medical management and advance care planning. If medical education (for nurses, doctors, therapists, etc.) utilized a philosophical palliative approach throughout, it would prepare health care practitioners to communicate medical needs and transitions much more effectively throughout the disease trajectory. Why not try this with caregivers? 

In addition to training caregivers in palliative care concepts so that they can better communicate and advocate for their patients, I have always believed that RNs are a very underutilized resource in palliative medicine. On the inpatient side, palliative care is frequently triaged to patients who are transitioning to end-of-life. When I worked as a nurse in Florida, the inpatient palliative care team I worked with agreed that I was capable of leading certain palliative care discussions at the bedside as an RN. However, there was no way for the team to take me on because I couldn’t write billable notes at the time. This led me to institute a more formal “Palliative Care Resource Nurse” role for myself, which furthered my participation and learning in the field. 

The skillset that I brought to palliative care as an RN is not unique to me- there are many nurses who demonstrate high-level communication and clinical skills that thrive in the palliative space. Even most recently, since COVID-19 hit, I’ve witnessed bedside RNs take on more palliative-oriented roles. With the help of a tablet (and often just a phone), countless nurses have helped orchestrate final goodbyes to loved ones isolated in the hospital. Bedside RNs are facilitating complex family discussions, advocating for medications to help patients in distress, and providing a myriad of care services to patients as they transition towards death. 

Nurses must play a bigger role in the future of palliative medicine, and I hope to facilitate a more formal place at the table for them to participate as palliative leaders.

3. Finally, we’ve seen widespread adoption of telehealth in the last couple of months due to COVID-19. What role does telehealth play in palliative care? Is it possible to deliver “whole-person” care this way?

Since the Centers of Medicare and Medicaid Services expanded access to telehealth services in March, telehealth has erupted (forcefully or majestically, depending on your perspective) over the last six months and taken over the medical community at the heels of the pandemic. Nothing is the same, nor will it remain the same. We have seen many potential benefits from utilizing telehealth during this time, but much like the novel virus from whose shadow it grew, we are still grappling with uncertainties, realizations, and a shaky sense of reality. Telehealth has improved access for many, but not all; infrastructure work was bypassed by necessity of implementation. As a result, telehealth services face a bit of an identity crisis: for an innovation whose main driver was bringing providers to those who need it most, it may leave some of it’s stakeholders behind.

On a lighter note, there are several benefits to telehealth! According to a recent scoping review, the use of telehealth and palliative home services reinforce feelings of security, and patients report fostering an authentic relationship with their care team. Telehealth is a truly wonderful tool, and one that can positively augment the patient-provider experience. In palliative care, we have unique opportunities to make virtual “house calls” and lead discussions among family members who may be dispersed across state lines. We can provide grief counseling that is more convenient to bereaved loved ones who may not want to leave the house, let alone their bathrobe. As new as palliative telehealth services are, it’s important to remember there is not yet a substantial body of data to support whether or not quality of life or overall symptom improvement is comparable to in-person visits. 

Importantly, I believe it is less about whether palliative telehealth can provide “whole-person” care, and more about how we will make sure that it does for everyone who needs it.  

The “digital divide” is a massive barrier to care, largely affecting non-white older adults and people of lower socioeconomic status.

A UCSF study published earlier this month examined data from 4,525 Medicare beneficiaries ages 65 and older and found that more than a third face barriers that could prevent them from utilizing telehealth services. Older adults in general, especially those in remote areas, those with hearing loss, dementia, poor vision, and/or who have a limited income may not be able to afford or utilize devices needed for telehealth. Telehealth was originally intended to improve access, but in an ironic turn of events its abrupt adoption has left behind many who need it most, magnifying the very inequities it hoped to dismantle. I have been a telehealth advocate for some time, but we are a long way from acknowledging it as a tool that benefits everyone. There is much work to be done among policymakers, and there are many opportunities for intentional, humane innovations that seek to mend barriers to care access. There is equal (if not greater) concern that in a rush to fund various health technology services, we may be hastening inequity and furthering the digital divide. I am hopeful, however, that the explosion of telehealth services during this pandemic has coincided with a historic civil rights and racial equality movement that will (and always should be) at the forefront of health innovation. Over the last few months, the health care industry has experienced an incredible acceleration of innovation across the care continuum.

Innovators like Sarah are pushing the industry to ask tough, yet important questions to drive improvements, efficiencies, and most importantly, better care. To continue pushing the industry forward in rethinking palliative care, Cambia Grove will be focusing its annual TRAILS competition on improving the palliative care experience for patients, families and caregivers. The competition will kick off on September 9th with a virtual launch event and panel discussion. Learn more here.

 

About Sarah Stacpoole

Sarah Stacpoole has been a bedside RN for nearly a decade. With her medical roots starting at Shands Hospital at the University of Florida, she came to Seattle in 2018 and quickly fell in love with the PNW. She is currently enrolled in the Doctor of Nursing Program (DNP) at the University of Washington, where she has furthered her palliative care expertise after recently completing the Graduate Certificate in Palliative Care. Her passion for palliative care and improving aging-in-place for older adults brought her to the innovative health sector. During her short time here in Seattle, Sarah has been a nursing consultant for several local health start-ups, and has begun to carve an innovative path for her own future contributions in the fields of palliative care, aging-in-place, and caregiver education.

About Sam Garrard

Sam Garrard is a Senior Public Relations Associate at RH Strategic, a leading healthcare PR firm based in Seattle and Washington D.C. Through strategic media outreach, integrated marketing campaigns and creative storytelling, Sam works to elevate health tech and life science companies as innovators leading the health care industry forward. Sam received her BA in Public Affairs and Master of Business Administration from Seattle University.